Y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon - Y Bumed Senedd

Health, Social Care and Sport Committee - Fifth Senedd

15/11/2018

Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Angela Burns
Dai Lloyd
Dawn Bowden
Helen Mary Jones
Julie Morgan
Lynne Neagle
Rhianon Passmore

Y rhai eraill a oedd yn bresennol

Others in Attendance

Ceri Matthews Hafal
Hafal
Claire Morgan Carers Wales
Carers Wales
Yr Arglwydd / Lord Elis-Thomas Y Gweinidog Diwylliant, Twristiaeth a Chwaraeon
Minister for Culture, Tourism and Sport
David Rosser Llywodraeth Cymru
Welsh Government
David Southway Hafal
Hafal
Dot Gallagher Mencap Cymru
Mencap Cymru
Dr Leanne McCarthy-Cotter Mencap Cymru
Mencap Cymru
Gareth Howells Carers Trust Wales
Carers Trust Wales
Gillian Otlet Llywodraeth Cymru
Welsh Government
Heléna Herklots Comisiynydd Pobl Hyn Cymru
Older People's Commissioner for Wales
Jane Young Mencap Cymru
Mencap Cymru
Kay John-Williams Hafal
Hafal
Simon Hatch Carers Trust Wales
Carers Trust Wales
Victoria Lloyd Age Cymru
Age Cymru
Wayne Crocker Mencap Cyrmu
Mencap Cyrmu

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Amy Clifton Ymchwilydd
Researcher
Lowri Jones Dirprwy Glerc
Deputy Clerk
Philippa Watkins Ymchwilydd
Researcher
Tanwen Summers Ail Glerc
Second Clerk

Cynnwys

Contents

2. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau 2. Introductions, apologies, substitutions and declarations of interest
3. Craffu ar gyllideb ddrafft Llywodraeth Cymru 2019-20: sesiwn dystiolaeth gyda'r Gweinidog Diwylliant, Twristiaeth a Chwaraeon 3. Scrutiny of the Welsh Government Draft Budget 2019-20: evidence session with the Minister for Culture, Tourism and Sport
4. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Gofalwyr Cymru ac Ymddiriedolaeth Gofalwyr Cymru 4. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Carers Wales and Carers Trust Wales
5. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Chomisiynydd Pobl Hŷn Cymru ac Age Cymru 5. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with the Older People's Commissioner for Wales and Age Cymru
6. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Hafal 6. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Hafal
7. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Mencap Cymru 7. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Mencap Cymru
8. Papur(au) i'w nodi 8. Paper(s) to note
9. Cynnig o dan Reol Sefydlog 17.42(vi) i benderfynu gwahardd y cyhoedd 9. Motion under Standing Order 17.42(vi) to resolve to exclude the public

Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.

The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.

Dechreuodd rhan gyhoeddus y cyfarfod am 09:31.

The public part of the meeting began at 09:31.

2. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau
2. Introductions, apologies, substitutions and declarations of interest

Rwy'n galw'r cyfarfod yma i drefn. Bore da a chroeso i bawb i gyfarfod diweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rŷm ni wedi cyrraedd eitem 2, ac rwy'n falch o groesawu fy nghyd-Aelodau i'r pwyllgor yma yn y lle cyntaf. Rŷm ni wedi derbyn ymddiheuriadau oddi wrth Neil Hamilton, ac nid oes neb yn dirprwyo dros Neil Hamilton.

A allaf yn bellach egluro bod, yn naturiol, y cyfarfod yma yn ddwyieithog? Gellir defnyddio'r clustffonau i glywed cyfieithu ar y pryd o'r Gymraeg i'r Saesneg ar sianel 1, neu i glywed cyfraniadau yn yr iaith wreiddiol yn well ar sianel 2. A allaf yn bellach eich hysbysu bod angen i bobl ddilyn cyfarwyddiadau'r tywyswyr os bydd y larwm tân yn canu?

I call this meeting to order. Good morning, everyone, and welcome to the latest meeting of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We have reached item 2, and I'm pleased to welcome my fellow Members to this committee. Firstly, we have received apologies from Neil Hamilton, and nobody is substituting in his place.

Naturally, this is a bilingual meeting. You can use headphones to hear interpretation on channel 1 or to hear amplification of the original language on channel 2. I would like to inform you that you should follow the ushers if the fire alarm is heard.

3. Craffu ar gyllideb ddrafft Llywodraeth Cymru 2019-20: sesiwn dystiolaeth gyda'r Gweinidog Diwylliant, Twristiaeth a Chwaraeon
3. Scrutiny of the Welsh Government Draft Budget 2019-20: evidence session with the Minister for Culture, Tourism and Sport

Gyda chymaint â hynny o ragymadrodd, rŷm ni'n symud ymlaen at eitem 3, a chraffu ar gyllideb ddrafft Llywodraeth Cymru 2019-20. Dyma sesiwn dystiolaeth gyda'r Gweinidog Diwylliant, Twristiaeth a Chwaraeon. I'r perwyl yna, mae'n bleser croesawu i'r pwyllgor yma Dafydd Elis-Thomas, y Gweinidog Diwylliant, Twristiaeth a Chwaraeon; David Rosser, cyfarwyddwr chwaraeon Llywodraeth Cymru; a Gillian Otlet o is-adran chwaraeon Llywodraeth Cymru.

Yn dilyn y drefn arferol, mae gennym ni nifer o gwestiynau ar wahanol feysydd o'ch portffolio, felly awn yn syth i mewn i gwestiynau, ac mi wnaiff Helen Mary ddechrau.

So, with those few words, we move on to item 3, scrutiny of the Welsh Government draft budget 2019-20. This is the evidence session with the Minister for Culture, Tourism and Sport. I would like to welcome Dafydd Elis-Thomas, the Minister for Culture, Tourism and Sport; David Rosser, director of sport at the Welsh Government; and Gillian Otlet from the sport division at the Welsh Government.

As usual, we have a number of questions about different aspects of your portfolio, so we'll go straight into questions from Helen Mary.

Roeddwn i'n meddwl efallai y byddai'n help i mi jest ddisgrifio beth yn union yw ein rôl ni fel adran, gan fod y sefyllfa yn newydd. Mi wnaf hynny wrth ateb y cwestiwn, os yw hynny—

I thought it might be of assistance for me to just describe what exactly our role is as a department, because the position is new, but I will do that in answering the question, if—

Na, medrwch chi wneud gosodiad agoriadol, ac efallai y bydd hynny'n sbarduno cwestiynau amgen.

No, you can provide us with an opening statement, and perhaps that will inspire alternative questions.

Yn gryno, mae'n fraint arbennig i gael ymddangos gerbron y pwyllgor sydd yn cynnwys iechyd yn ogystal â gweithgareddau eraill. Rwy'n credu ein bod ni wedi bod yma unwaith o'r blaen. Mae gen i gyfrifoldeb am strategaeth genedlaethol a pholisi ynglŷn â chwaraeon cymunedol a gweithgaredd corfforol ar draws Cymru, ac mae hynny'n cynnwys y swm mwyaf, sef nawdd i'r corff cyhoeddus Chwaraeon Cymru, ac mae dros £22 miliwn yn cael ei wario yn y cyfeiriad yna.

Mae gennym ni hefyd gyllideb arall fwy hyblyg sydd cyn lleied â £252,000, sef gwaith a wneir ar gomisiynau uniongyrchol ac ar beilota neu gychwyn, neu ymchwil yn ogystal. Felly, dyna, yn fras, ydy fel mae'n cyllideb ni yn gweithio. Diolch yn fawr i chi, Gadeirydd.

Briefly, it's an honour to be appearing before this committee, which includes health here as well as other activities. I think that we have been here once previously. I do have responsibility for the national strategy and policy regarding community sport and physical activity across Wales, and that includes the biggest sum, which is funding for the national body, Sport Wales, and over £22 million is being spent in that regard.

We also have a more flexible budget, which is as little as £252,000, which is for direct commissions, pilots or research. So, that is how our budget works. Thank you very much, Chair. 

Diolch yn fawr am yr eglurdeb yna. Yn amlwg, fe wnaiff hynny sbarduno’r cwestiynu—Helen Mary.

Thank you very much for that clarity. Clearly, that will inspire questions—Helen Mary.

Diolch, Cadeirydd. Thank you. A couple of questions about processes and how the cross-governmental approach has been addressed in the budget. Could you tell us how, in developing this budget, the Welsh Government has taken a collaborative and cross-departmental approach to promoting physical activity? There's obviously a lot more than what's in your own budget heading.

It's because I carry the overall responsibility across Government for physical activity that I'm pursuing this, and there has been a discussion, or two discussions, in Cabinet, one of which I attended, and there's also been a new way of working together between the public bodies in this field—maybe we will come to this later on.

The important emphasis is that physical activity is to be considered as a policy objective overall, throughout all departments, and there's now a working group that I will be chairing when the group meets next, which will take an overall view to ensure that we are fulfilling the obligation that rests on all of us as Ministers. And it is in the same category, as far as I'm concerned, as the Well-being of Future Generations (Wales) Act 2015. It is part of the Holy Bible of our constitution and our work as a Government. 

09:35

That's useful, thank you. So, in terms of—. Can you, sort of, point us in the direction of how you'd evidence the overall financial strategy in the budget for meeting the healthy and active aims in the national strategy? It might be a chance for you to tell us a bit more, perhaps, about this new approach for working with the public bodies. 

We have both a specific area of spend, which is directed towards healthy and active activity and there is a healthy and active fund that's only £5 million. It was only launched by myself and the Cabinet Secretary for Health and Social Services in the appropriate location of the Brecon Beacons earlier this year, and that is already now inviting expressions of interests, and we hope to be starting to pay out from that fund. That is for innovative activity of all kinds in that area.

As regards the overall approach, we are pursuing the physical activity responsibility by working through, as you intimated, our three important public bodies—that is Public Health Wales, Natural Resources Wales, and, of course, Sport Wales. And these bodies have met on a number of occasions, and I'll ask David, perhaps, to go into more detail as to the discussions that have taken place at the level of officials with these bodies, but I have met them formally on one occasion, and, of course, it's a strategic approach, which I strongly recommend across Government. 

So, the healthy and active fund is a first and good example, I think, of two different departments actually pooling budgets. So, the health department has put budget into the fund; Sport Wales has put some of its budget into the fund; and NRW is putting access to some of its natural resources into the project too. The fund is being managed jointly by the three bodies together under the direction and supervision of the Minister and the Cabinet Secretary for health. So, I think that's one good example where, actually, two departments have put money into a single pot.

Our sports policy branch, under the Minister's direction, is also working with colleagues in education around their twenty-first century schools programme, helping to advise on new proposals that are coming in for funding through that programme; ensuring that facilities that are built as a result of it are open to communities outside school hours. We're also advising and working with education colleagues on their community hubs programme. So, I think there are a number of examples, some of which are collaborative working and advisory, which go to this agenda, and some of which are starting to get into the budget pooling area, which is quite exciting. 

Yes, just on the healthy and active fund, I wondered if you could just give a quick update on, firstly, how you intend to monitor this fund. And have you set any other objectives for it, such as improving equality in terms of trying to get more women, young women, children into the whole area of a healthy lifestyle? 

Well, I'm pleased to say that there are 48,000 women and girls who now play netball in Wales. That was the latest figure I was given by Welsh Netball. The equalities approach is one, obviously, that we encourage. I've personally met the women's football team twice and watched them play, and I make sure that I am similarly supporting women's rugby and all the activity that goes on surrounding that in the other sports, given that we have 62—or is it 64 now—governing bodies across all the sports in Wales. It's a message that we make sure that they all pick up.

But, then, the key part of the healthy and active fund, it will be in the next financial year that we will be starting to pay out. We've got expressions of interest already appearing, and the intention is that it should be innovative and collaborative, as you've already heard.

09:40

Yes. Because, actually, it slightly rolls into the other question I was going to ask you, which is, actually, about—. You mentioned sport, sport, sport and sport, so the healthy and active fund, how much of it is actually going to go to the physical activity side of it, which, of course, isn't sport? It's about getting people who are turned off by sport, or feel frightened of sport, who don't want to be seen in that competitive way, into a healthy and active lifestyle.

Well, I think this is where we have to be careful what we are talking about. I wasn't talking about sport. I mentioned the particular activity of Sport Wales because it is a public body that operates in a particular area to support governing bodies and support activities. We can place on these bodies, as we do in the remit letter, and if you were to—. I won't quote from it at any length this morning, but we have been able now to indicatively allocate, or indicate, that we will allocate to them over the programme of this Government, from 2018 through to 2021. They know where they are in terms of the budget. So, that's our arm of direct intervention, if you like.

But the emphasis on physical activity extends to the whole nation: 32 per cent of the population of Wales admit, in the national survey, that they don't do anything at all. That is a very serious issue, and I don't think we address that by going around hectoring and lecturing, but we go around—. We get involved in that issue by example, I think, by showing that physical activity should be intergenerational, should be family and community based. It is not the same as competitive sport. Physical activity is individuals enjoying a walk, enjoying a run, enjoying a swim, enjoying whatever they want to do, and that's a matter of choice. We think it's very important that we offer people as wide a choice as possible so that they're invited to participate, and this is where these big marathons and big half marathons are very important for that because they're a public spectacle. But equally important are the small community groups—many of them were women's groups, many of them groups of older people who meet together for the park runs. I happen to live close by one of the most important locations in Cardiff for a park run, and it's great to see the level of participation that has increased in that particular form of activity. Now, that is not competitive sport; that is a sport in which people are invited to take part. Do you want to say something more? 

The healthy and active fund is intended to be a long-term collaboration between ourselves and health and our three arm's-length bodies. The first iteration of it will focus on physical activity, future iterations may focus on other health issues. The aims are explicitly to increase the physical activity of those who are currently sedentary, who have very low levels of activity, improving levels of mental well-being through social interaction, increasing or improving access to physical spaces, hence the NRW involvement.

Priority was going to be given in this first phase to projects that reduce inequalities in outcomes for children and young people, people with a disability or long-term illness, people who are economically inactive or live in areas of deprivation, and older people and those around the ages of retirement from work. Expressions of interest are being sought now; they will need to be collaborative. This is not just about giving more money to individual interest groups; it's deliberately aimed to get people to work together to come up with new approaches. And monitoring will be built into that, projects will have to set out monitoring and evaluation arrangements, which the three bodies, on our behalf, will hold them to account for. Typically, we'd expect to see an increase in the number of participants, an increase in the number of participants reporting positive change in mental well-being, for example; and there'll be an independent evaluation of it. So, we're building in, I hope, some rigorous monitoring from the outset.

If I may, Chair. Just on that, I should also have mentioned the healthy Wales 10-year plan, which is going out to consultation in the new year. We see that as a structure within which our activity and funding—the healthy and active fund—as being a collaborative way of working and that's obviously led by Public Health Wales.

09:45

Thank you very much. You've touched upon this, I think, David Rosser, slightly earlier. Bearing in mind the scarcity of the public purse across the UK and passported to Wales, and the whole emphasis around grant making that we've had from the European Union, it's never been more important that we make full use of community assets, including community schools. So, within the 10-year plan that you talked about, structurally, for Wales, what provision is there, or what understanding is there of the importance of being able to use twenty-first century schools as true twenty-first century schools, as real public assets? In my constituency alone, there has been over £52 million spent, and, at the moment, we are facing, across Wales, in my view, some excellent examples of that being opened up to the public, as intended, but there are also very many examples, including in my own constituency, where they are not opened up to the public. So, how important a plank is that in terms of the long-term strategy?

The twenty-first century schools—. The new buildings, it's not so difficult to make sure that those are opened as community assets, but— 

Well, could you give us the examples and we'll get on the case? Because we have experienced a situation where, with older school buildings, there tends to be, in some communities, an attitude on the part of individuals who are responsible for those buildings or even school governors, who are not very happy to collaborate with wider community activities.

So, how does Welsh Government then use this very important element in terms of progression pathways for sport? Is there guidance to be issued?

This is properly one for the Cabinet Secretary for Education, clearly. We are in—. The Minister—

But surely, in terms of sport and your mandate, there must be a role for yourselves, as well.

Yes, we have had a number of discussions with the Cabinet Secretary and a discussion between officials. The ultimate sanction, of course, is legislation, and would I contemplate that? Yes, I would. But, of course, having time to deliver legislation in this Assembly is going to be rather difficult. But that is always a sanction I would be willing to take, because these are public buildings and public assets that should be publicly available.

Yes, I wanted actually to follow up Angela's point about access for girls and women to sport. I know Angela raised the issue of monitoring as well. I'm sure you probably heard Sally Holland, the children's commissioner's comments last week about girls having opportunities to take part in competitive sport, and the lack of opportunities. So, I just wanted to press the case for doing all we possibly can in that field. How are you actually monitoring the numbers on the increase in opportunities for girls and women, so that we do get some idea if there is an improvement or not? Because, I think, having seen it quite a lot at first hand, it is very frustrating for girls to get those opportunities that the boys do, on the whole.

Yes, I fully agree with the thrust of your question. Sport Wales does and is required to collect the relevant data on equality of opportunity for the use of sporting activity and the profile of the people who undertake the activity. The social surveys, as well, provide us with evidence of the level of participation. And we have also been in discussion with Chwarae Teg and other equalities organisations to ensure that, in the delivery of our policies, and certainly in recruitment to any public bodies we are seeking to get support or new membership for, we do have a fully compliant and effective equalities policy.

So, it's about ensuring that there are role models in all aspects of public life, where we have an opportunity to make appointments or to organise activities through the bodies that we fund, and make it absolutely clear that it is part of the funding package that people receive from public funds in Wales that they are expected to respond to the Government's strategies. And we will ensure that the message that you've taken up with us today will be reinforced in the remit letters, which will be going out soon. I note that the chair of Sport Wales, Lawrence Conway, received his last remit letter in February 2018; well, he'll be having another one soon, so we'll make sure that we put that right in there. 

09:50

That would be good, but is there a mechanism for when you—? Say, for example, you give out money, is there a mechanism of feeding back directly for that sum of money, rather than an overall survey?

The money's distributed to sports organisations by Sport Wales on our behalf. We give, through the remit letter, Sport Wales direction as to some of the priorities that we want them to address, and reducing disparities in participation levels amongst different cohorts is clearly one of those. It's a responsibility they take very seriously, so whenever they then pass on funding to sports organisations, they require them to provide data as to activity levels. 

Sport Wales is currently looking at developing a new strategy, and I would expect, in future, funding for sports bodies to be far more closely related to actual participation levels and removing disparities, or addressing disparities, than just membership numbers, where it currently is at the moment. So, this is an agenda that's taken very seriously. Data is collected, and some of the traditional male sports such as rugby and football are actually achieving very significant uplifts in their female participation levels. So, this is a very live and very serious area of policy for us. 

Just to expand on that, really. That's really encouraging to hear with regard to the participation of women and girls, but we know that there are other social groups that are not sufficiently, as the Minister has already said, physically active. I'm thinking particularly of disabled people, including people with learning disabilities, and also the age profile of people participating. So, does what you've said, Mr Rosser, in terms of responding to Julie Morgan's question about monitoring the spend on participation by sex, by male and female—does that also apply to, for example, participation by disabled people, the broader equality of protected characteristics?

Disability Sport Wales is a major partner for us, and I think there are over 23,000 club members involved, and they provide for 1 million sport participation opportunities each year through Disability Sport Wales. Do you want to add anything?

Disability Sport Wales is one of the biggest recipients of funding. It's probably in the top five recipients of funding from Sport Wales, and I think does an excellent job. There are also programmes run with, for example, BME Sport Cymru. Some of the examples are—they're specifically providing closed sessions for BME females to swim, for example. So, there's actually quite a lot of creative work going on in this area, and the monitoring is being tightened and more focused towards those areas. 

From the sound of it, it's pretty clear that you can see this investment is delivering this level of participation in this group that's previously struggled. That sounds really positive to me. 

BME Sport Cymru is a two-year Sport Wales project, and the investment is £538,000, and the intention of this is to increase substantially the active BME participation in sport across Wales. And the project has engaged with nearly 3,000 individuals in regular sport and physical activity. 

I don't know whether you want to add anything specifically on that.

Okay. Moving on, we need some agility now in the questioning, and today's queen of agility is Lynne Neagle. 

Thank you. Can I ask about the review of sports facilities in Wales, including relevant timescales, and whether it's likely to have an impact on future spending plans?

Yes. So, you were after an update, and the sports facilities review had a dual aim. It had to consider how to increase the spread of world-class facilities across the country, but it also had to consider how this would benefit local communities, as well as the elite athletes. That work has pretty much been undertaken, but the place where we are at the moment is that it's dependent on receiving greater certainty around the funding availability. So, this is final investment in capital facilities. So, the Minister is in dialogue with the Cabinet Secretary for Finance, and is going to be talking about that in the near future. 

I should add, actually, that there's no timeline exactly for finishing this project because of their needing to negotiate and discuss about the capital investment, but we are taking forward a couple of things that we can do within our portfolio within our current budget next year. So, things are progressing; nothing's stopped. 

09:55

But we have an emerging view that this is best tackled by assessing the effectiveness and the need for further capital investment that we've just heard about in sport facilities, through an approach that takes account of the importance of having an interrelated network of facilities at national, regional and local level. And we are very keen that the talent pathways for young athletes and young participants in sport, as well as the opportunities for the general population to participate, are spread well throughout Wales. That's an issue that is of concern. 

So, we know that lots of local authorities are struggling to maintain their sports facilities. Lots of them have had to hand over pitches to community groups who are having to pay for the upkeep, the marking, et cetera, which is extremely expensive. What consideration have the Welsh Government given to the impact of issues like that in considering the budget, given the longer term importance of encouraging the community to be healthy and active? 

Well, Sport Wales is very active in working with the governing bodies on any issues involving community asset transfer, and where there are resources that are being transferred into trusts or into community activities, then we ensure that they have the full range of advice and support for the activity that they undertake. But we are very conscious that it is not our role as national Government to direct local authorities as to what should be their priorities, or to substitute where local authorities have different priorities. Indeed, I won't start naming individual authorities, but I'm very lucky, north and south, to live in authorities that give priority to sporting activity; the investment that we've seen, for example, in Parc Eirias in the county of Conwy where I live is a very good example of how you can geographically locate facilities that are central to a large area of population throughout north Wales, and we want to make sure that we operate in a similar way with new facilities for the future.  

But it's not just a question of prioritising, is it, because if local authorities are so cash-strapped, then it's very difficult for them to make those investments in sporting facilities.

Can I just ask about the sugar tax money? It's £57 million over three years. As far as I'm aware, none of that has been earmarked for physical activity. Is that something that you've discussed with the Cabinet Secretary for health? Have you asked whether some of that money can be used to help keep our communities sporting and active? 

I haven't specifically discussed that tax. I don't know whether there have been internal discussions between officials. 

We're in general discussion around the availability of finance for sports facilities, not particularly out of any hypothecated pot. This is a live discussion between the Minister, the Cabinet Secretary for Economy and Transport, health and finance— 

It's also worth mentioning, against this very difficult environment for local government finance, we are seeking to support community groups who want to or have been required to take on facilities through using Business Wales advice, Development Bank for Wales support. So, we're trying to use a wider range of levers where we can, but it is a tricky area.   

Good. The point about the sugar tax is important, because it was widely ridiculed when that was suggested a decade ago as something worthwhile. Now, it's in, but the idea is from Westminster, but, basically, the idea is to have the funding for physical activity to tackle the obesity agenda, not other matters of Government. So, it's a good point. Julie Morgan. 

10:00

Thank you very much, Chair. I'm going to ask you about the free swimming programme and the recent review. So, there's been a recent review of the programme, which I understand found that it only costs half the annual £3 million grant, and that local authorities have become reliant on this funding as an income stream. So, what steps are being taken to address this issue?

This is being pursued actively through Sport Wales, who are considering the recommendations that have arisen out of the review. I'm very anxious that any funding, especially where there is a history of ring-fenced funding, should be considered carefully, and that we should always aim to provide as wide as possible a range of physical activity for people to participate in. And I think the lesson from the review of the free swimming scheme is that we should not get into a situation where we are subsidising local authorities to undertake activity that they don't actually do, to speak frankly. Do you want to add to that?

Obviously, if only half of it is being used for the actual swimming, that would mean that twice as many people could swim if they were using it fully. I wondered whether you were aware of any efforts made individually by local authorities to increase the number of people swimming, because I think it's a great scheme, and I'm very supportive of it, but how much is it promoted? 

But I think the problem now is that people seem to be—I can't really say voting with their feet, as it's not the right metaphor here, but it seems to us that people want to have a broader choice of activities that they undertake, and the take-up is, after all, a matter of individual choice in terms of taking up the scheme. David, do you want to say something?

Some local authorities do very well. Others possibly spend less effort in promoting it. So, the Minister has asked Sport Wales to work with delivery partners—that's the local authorities and the main aquatic sports—to give him some advice on what a new scheme could look like, which would still contain free swimming, but would be aimed at making sure that there is good value for money from it, and we are awaiting that report now. We expect it shortly. 

Right. So, in fact, different local authorities vary in terms of how much use there is of the free swimming. Is that the case? Right. So, those that are doing well—obviously, you would want to ensure that that continued.

As I say, Sport Wales are working with the Welsh Local Government Association and local authorities and the aquatic bodies to come up with some recommendations for the Minister as to how to make this work well. And I've no doubt they'll be learning from those local authorities who already do it well. 

Thank you. And then my second question is about the expectation of the Welsh Government that Sport Wales is going to explore the potential for a new model of community sport across Wales. So, I don't know if you could give us any more information about that, and what money has been set aside for it in the draft budget. 

I think this is potentially very exciting, because it does mean more effective participation, again including shared funding, especially with the health boards. We are very keen, and I know that the relevant health boards that are already participating, particularly in the north, where the scheme has been more developed than in other areas at the moment, are very keen to see results of collaboration. And what we are doing—by encouraging the authorities to work together, we will produce a model, working with Sport Wales here as the lead body, that will be applicable to other regions in Wales as we indeed analyse the success of the collaboration that's happened in the north. But from my direct experience of what's happened in the north, I'm very positive about the potential of this scheme, and we'll certainly be prepared to report back to you the participation of Betsi Cadwaladr, of the universities at Bangor and Glyndwr, of the housing associations, with Public Health Wales and Disability Sport Wales. It's a brilliant way of using public funds, I think. And we hope that the engagement that there has been with this process in other regions will start early in 2019. So, this is another good-news story, we hope.

10:05

Well, the key issue is the partnership working. But to undertake that effectively, there has to be partnership funding. And that is something we will indicate in the remit letter to Sport Wales, and I know that my ministerial colleagues in other departments—certainly, the Cabinet Secretary for health—are very keen that we have further developments of shared funding, as we already have in the healthy and active fund. Do you want to add anything to that, David?

The money for this will come from within Sport Wales's existing budget. It's money they're already spending. They're already spending at the moment by direct grants to individual local authorities or to individual sports. This is about actually encouraging those bodies to come together with a range of new partners, including the health boards, housing associations, to pool that money and spend it on a regional footprint more effectively, to come up with different opportunities and increase participation. So, it's Sport Wales's budget, and it's for them to decide how they do that, and they're in the final process now of commissioning this partnership.

Thank you. Diolch, Chair. Today of all days we can calculate some of the loss of European funding to the arts and sports in Wales. So, as an aside, I'd like some comment later as to if there is an assessment of how much we've lost in Wales in terms of sports projects from European funding. But in regard to the balance of whether we've got the strategy right between funding for community sport and elite sport, if we look at the tsunami of hits between the loss of non-statutory services for local authorities, plus the scarcity of lottery funding, plus that other hit in terms of European funding around the arts and sports, that foundation level for community sport has never been more important in order to provide that progression pyramid, as we know, to elite sport. So, have we got that balance right, futureproofed against those three challenges that I've just mentioned?

'No' is the answer to that, and I would be misleading the committee if I had thought at all it was possible for us to replace the substantial funding that Wales has received in terms of European funding. We are in an extremely difficult situation. And you're also quite right about the lottery situation. I've had discussions with Camelot, and I have overall responsibility for—not for the operation of the lottery, but for the way lottery funds are dispersed in Wales. I mentioned earlier the £22.3 million that Sport Wales had allocated out of Government funds, out of our budget, but of course it becomes £34 million funding when we look at the lottery contribution. And it's key that we can, if possible, through working with Camelot, and getting a bit more sense from the UK department, if I can say that in passing, ensure that there isn't a further reduction in the lottery funding in Wales.

But I think we have to be absolutely honest with the electorate, and say the decision that was taken to leave the European Union, which is particularly in our minds at the moment, obviously is a decision that will have serious implications for the Welsh block, the Welsh budget, and serious implications for communities in Wales. And it's a deficit that they cannot expect the departments of Welsh Government, which have a very small budget anyway, and departments like our department, which was only recently re-established, within the last year—we cannot be expected to bear the additional burden of trying to replace European funding. My understanding is that we are now able to look at a transitional situation for up till 2020—that's the latest information we have.

10:10

So, with regard to the fact that our aims have never been higher with regard to where we want to be as a nation around elite sport and also activity for all—our high-level strategies, which are absolutely correct and visionary—what mitigation, then, have we got in our strategies longer term to be able to fill the gap that we must articulate, yes, but, then, in terms of health as well as the enjoyment of sport, we also know we have to fill that gap? So, what is the replacement? How are we going to meet our aims if we know that the level of finance is not going to be anywhere near as healthy as it has been?

The only thing that we can propose is more effective use of shared budgets, and that's what we're doing.

And so, how important, then, is it that community schools' public assets are then opened up to the community?

Yes, I certainly accept that and I've already threatened legislation, earlier on in this committee, and I'm prepared to pursue that. It might be that we would want to prepare a draft Bill to make it absolutely clear that we had a determination to ensure that, but I don't want to threaten public bodies with something that we will not deliver. But in terms of the level of funding, I think we have to be completely realistic and understand that this is where we are and this is the mess that we've got ourselves into as a nation, quite frankly.

So, finally, Chair, if I may ask this: you've touched upon lottery funding and the scarcity of that and the fact that, with project moneys being withdrawn across the UK and across many different programmes in terms of charitable work and voluntary organisations, that pull is very great now. What can we do in Wales to better—and you mentioned your responsibility—pull on lottery funding? What is the strategy around that, because we know we don't get what we should get?

Okay, we're a bit pressed for time. Thank you for that, Rhianon. Dawn is going to wrap things up.

Yes, just on the impact of investments, really, and if you could perhaps give us an overview of the performance indicators that Government uses to measure the impact of investment in sport and physical activity.

The measurement of performance is something that is requested in the remit letters very clearly. I won’t read them out, but, as I indicated, the latest one was in February 2018 and there will be another one, if I’m still in this post, obviously, within that timescale. I will certainly make sure, because of the interest raised during this scrutiny in the question of accurate statistical information that is easily available to Members, that we have all the information that we have currently available shared with this committee as a result of this scrutiny. Do you want to add anything there, David?

At the moment, Sport Wales tends to focus on chief medical office activity levels—numbers of people participating in activity at a certain level and intensity per week. That’s useful. We have actually commissioned Sport Wales to work with Public Health Wales and Natural Resources Wales on a more granular level of outcome indicators that we can use in future and that work’s ongoing at the moment, but at the moment they’re quite closely tied to the CMO—

Okay, that's helpful. It's just that I think that, given all the things that the Minister's been saying about the difficulty of budgets and the shrinking budget, we need to be very sure that what we are investing is actually delivering the outcomes that we're seeking. So, okay, thank you for that.

We've talked a lot about projects that are going to be undertaken and about the need for those projects to have the time to develop. Of course, we need to tie the funding into it. So, I just wanted to confirm whether or not you're planning your funding on a three-year rolling basis, because I think that Sport Wales only gets—although their remit letter covers a three-year cycle—a year of funding confirmed at a time, especially when you're looking at shared projects and you're talking about shared budgets where, for example, health is moving more and more to a three-year cycle. How are you dealing with that tension?

10:15

Well, I'm afraid that some of these questions need to be addressed to the UK Treasury. I would start there. And that's not a political point, but it's very difficult when you're dealing with public funds when you don't know the overall block for an appropriate period. The firm budget for 2018-19 we have now been able to stretch, as I mentioned earlier, to cover the programme of this Government, which will take us to 2021. But, as you indicate, it is indicative for the third year. I don't think there's any other way of operating that the finance Minister would countenance—I think that's the answer to that. 

I think, in health boards, though, they're moving to a three-year funding cycle to tie into their integrated medium-term plans. So, I kind of assume that throughout Government there's going to be a drive to three-year, because one of the great arguments I know I hear in my constituency is of great projects that have just started and then can't get the funding for year 2. It's very difficult to recruit people or to maintain that substitutability, because otherwise we're just ripping up £1 notes—if we had £1 notes still, but we're ripping up whatever the next note is—in a park.

We recognise the issue. Most outside bodies would prefer certainty of funding over a longer period. This year, we've only been given a one-year indicative budget by the finance department, by the finance Minister, so that's what we've been able to pass on to Sport Wales. But we recognise the issue. 

Okay. So, the last quick question, then: are there any projects you're working on that are joint or shared funding projects where the other partner has got a more secure budget line than you have?

Grêt, diolch yn fawr. Dyna ddiwedd y sesiwn gwestiynu. A allaf i ddiolch yn fawr iawn i'r Gweinidog Diwylliant, Twristiaeth a Chwaraeon, a David Rosser a Gillian Otlet am eu presenoldeb a hefyd am ateb y cwestiynau, a hefyd am ddarparu'r dystiolaeth ysgrifenedig ymlaen llaw? Diolch yn fawr iawn i'r tri ohonoch chi. Diolch yn fawr.

A gaf i gyhoeddi nawr i fy nghyd-Aelodau y gwnawn ni dorri am egwyl fer, ond i aros yn yr unfan am gwpwl o funudau? Diolch yn fawr iawn i chi.

Great, thank you very much. That's the end of the questioning session. May I thank the Minister for Culture, Tourism and Sport, and David Rosser and Gillian Otlet for attending this morning and also for answering the questions, and also for providing the written evidence beforehand? Thank you very much to the three of you. Thank you very much.

May I announce now to my fellow Members that we will have a short break, but if you could stay where you are for a couple of minutes? Thank you very much.

Gohiriwyd y cyfarfod rhwng 10:17 a 10:35.

The meeting adjourned between 10:17 and 10:35.

10:35
4. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Gofalwyr Cymru ac Ymddiriedolaeth Gofalwyr Cymru
4. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Carers Wales and Carers Trust Wales

Croeso nôl i bawb i'r sesiwn ddiweddaraf o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 4 erbyn rŵan, ac effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â gofalwyr. Y sesiwn dystiolaeth ddiweddaraf sydd o'm blaenau ni, rŵan, ac mae'r sesiwn dystiolaeth yma gyda Gofalwyr Cymru ac Ymddiriedolaeth Gofalwyr Cymru. Felly, i'r perwyl hwnnw, rwy'n falch iawn i groesawu Claire Morgan, cyfarwyddwr, Gofalwyr Cymru; Simon Hatch, cyfarwyddwr, Ymddiriedolaeth Gofalwyr Cymru; a hefyd Gareth Howells, cadeirydd, Ymddiriedolaeth Gofalwyr Cymru. Rydym ni'n ddiolchgar iawn am y doreth o wybodaeth rydych chi wedi cyflwyno ymlaen llaw—y wybodaeth ysgrifenedig. Wedyn, yn deillio o hynny, mae yna rai cwestiynau y mae Aelodau eisiau'u gofyn. Felly, i'r perwyl hwnnw, awn ni'n syth i mewn i gwestiynau ac mae'r cwestiynau cyntaf o dan ofal Lynne Neagle. 

Welcome back, everyone, to the latest session of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We have reached item 4, the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers. This is the latest evidence session, and it's an evidence session with Carers Wales and Carers Trust Wales. So, to that end, I'm very pleased to welcome Claire Morgan, director, Carers Wales; Simon Hatch, director, Carers Trust Wales; and also Gareth Howells, chair of Carers Trust Wales. We're very grateful for the great deal of information that you have sent to us beforehand—the written information. Resulting from that, there are some questions that Members wish to ask you. So, to that end, we'll go straight into questions and the first questions are from Lynne Neagle.

Thanks, Chair. Good morning. Just for the record, can you just give us a bit of a summary about how many carers we have in Wales and the scale of the work that they do?

Yes. If we take the census figures, there are at least 370,000 carers in Wales, although that's likely to be a large underestimation, because that was people self-declaring themselves as carers. Sixty per cent are aged 50 plus; 28 per cent provide over 50 hours of care a week, and obviously that's changeable because responsibilities change; 49 per cent of carers work and care; and the peak age to care is between 45 and 64 and there are a lot of people who are what we call 'sandwich carers', so they're both caring for children and caring for elderly relatives. Every year, approximately, 125,000 people will become carers, and an equivalent number will stop caring, so there's quite a large flux within the carer population. It's estimated that there'll be a 40 per cent rise in carers by 2037, so there'll be over 0.5 million unpaid carers by then. The value of unpaid care in Wales is roughly £8.1 billion a year.

A reasonable amount. Not enough in terms of the statistics. We know that there are, according to the census, 7,500 under 16 and a further 21,000 are generally referred to as young adult carers between 16 and 25. Very clearly showing a lot of unmet need in terms of the challenges to their practical daily routines, to their emotional well-being and to their ability to live any kind of life alongside their actual caring role. Gareth, do you want to give any examples in terms of what you see locally?

Yes. Particularly in terms of young carers services, we deliver a number of young carers services and the breadth of support that they provide to both their siblings, potentially, or parents: they could be providing support to a disabled child within the home, they could be providing support to a parent with mental health problems or with a drug and alcohol issue, and the breadth of support can be from providing breakfast in the morning to that person, to providing real, intense, emotional support. There's a real range and scope of support that that young carer can be providing.

Do we know how many carers are under 16? Presumably, there are lots of young carers in that position.

The estimates from the census say 7,500 Wales wide. We know that research by Professor Saul Becker indicates that it's likely to be four times as many because of underreporting. And we know that, in terms of the opportunities for their life chances, there are some very, very clear negative impacts that have been recorded for all young carers: they're considerably less likely to go on to get a job, to leave school, to go to any further or higher education, and statistically they're four times more likely to drop out of further education or higher education if they get to that education.

And, if I may just very briefly give you an example of one of the young carers that we've supported recently, called Lucy, who is now a young adult carer and is training to be a teacher. Like many young carers, she struggled at home. She looked after her mum and her sister—her mum's very ill—just on her own. Like 26 per cent of young carers in Wales, she was consistently bullied because of her caring role. At home, she took on a range of different domestic roles, including cooking, cleaning, managing the family's finances and attended medical appointments with her mum and her sister, regularly taking responsibility for the managing of that medication. But, unlike most young carers, a teacher took time out with her to have a long conversation about her role and wrote her a letter and put her in contact with the local carers service, which resulted in her going on to higher education close to where she lived so she could do it from home. This is actually not very far from where we are. At that point, Lucy was incredibly grateful because she was in crisis. The local service supported Lucy to go to university. And I think the key thing here is that the formal systems and processes around her didn't pick any of this up; it was one individual. There was no structure that supported her until she reached crisis point, and it was a teacher reaching out to her in that circumstance. And what that teacher did was, herself, go out and find out the fact that there was a local expert carers service that did work with young carers and teenage carers every day and which was able to support her.

10:40

Apologies if this is about to be asked. Is there a need for a revised code of practice for local authorities in this regard?

In particular with regard to young carers, I think, there are some exemplar tools that are in place and there is some practice that is going on, which is called the Young Carers in Schools programme. I think that young carers, the majority of their engagement with professionals is through education, is through schools. It isn't necessarily—. There is some guidance, particularly in relation to how young carers services should be structured through local authorities, and in particular there is—

In regard to local government, local authorities' liaison with schools, training through the headteacher forum, et cetera, et cetera, is there—yes or no—a reason or need for any revision of the guidance around young carers?

You've referred to the census data. Do you think we've got enough information about carers? For example, what do the local authority health board needs assessments contribute to our knowledge of carers? Are they delivering the goods?

I think Carers Wales's Track The Act work that we've done demonstrates that there's really poor data collection about carers across Wales. That's due to different systems being used, different ways of capturing information and also systems not identifying carers when they go to local authorities. It's definitely the case that, in some areas, the information and advice service is gatekeeping as well to try and manage capacity.

Okay. So, one of the concerns you've expressed is that carers aren't identified when in contact with services, so opportunities are missed. How do you think that could be addressed so that every contact really matters and nobody falls through the gaps?

When the social services and well-being Act first came into place, there was a lot of training within local authorities that took place, but we know that those services are often in flux. People move on and that's training that I don't think is kept up. I think the ability of people in the information and advice services is not always there in terms of identifying carers and listening out for the right sorts of things when people are talking about their own personal circumstances—

Because a lot of people don't realise that they are carers, do they? That's very common.

Well, our research found that 50 per cent of people in Wales say that they don't know a single carer. That's crazy, because we know that there are a lot of carers and everybody will know a carer. It's just that they're seeing people as a wife, a mother, a son, a father, and not as a carer.

There is a considerable amount of data available about carers; it's just it sits in a range of different pockets and there's no structure or system to actually pick it up. Certainly, we should be making every contact with a carer count, and that should absolutely be via public sector professionals, and we need to find better ways of doing that. There's a lack of national data, but if we think about the sort of data that my colleague Gareth and other local carers services have around Wales, it's considerable. It's rich in its depth and in terms of the quantity as well as the quality. I don't know whether you want to flag that, because I just think that that mustn't be missed here that there is a considerable amount out there; it's just how it's used.

Definitely. In terms of data that is collected on carers, there is an awful lot of data that is actually there before the local authority line, before the statutory services are there. The majority of services that are provided for carers are now provided within the third sector. There needs to be a mechanism for how that information is used. It shouldn't just be about what is contained within the local authority remit or the health board remit. It's about what's there already. There is a wealth of knowledge across Wales in terms of the information and the support and the IA that is being provided outside of that statutory concern.

10:45

So, you're saying it's there but it's not all joined up, and nobody can use each other's information basically.

I think the other thing is that four out of five carers will be identified for the first time in a healthcare setting, in a primary care setting, and that's not always captured either, which is a huge shame.

You've touched on this already, but if you can perhaps say a little bit more about how effective you think the information and advice and assistance services provided or commissioned by local authorities are—and if you've also got any information about how effective any provision through the medium of Welsh is, because that's very important, particularly for very young carers and older carers.

Our Track The Act survey of carers showed that increasing numbers of carers are actually seeing information provided by the local authority or provided by the third sector organisation that's commissioned to provide that service and that, when they see it, they find it useful. But the issue is that not enough carers are seeing that information. We need to increase the reach of that information out.

There are numerous opportunities lost to identify and support carers. Those systems are out there, particularly in terms of health and in terms of the opportunity to be preventative and to engage with support, sustainability and sharing of knowledge across the third sector prior to crisis and prior to the need for carers to be identified or go into local authority systems potentially to try to—. The Carers Trust carried out quite a lot of work with professionals in this area. I'll ask Gareth to say a couple of words about our Young Carers in Schools programme, which builds on the first question, but there is a range of toolkits. What we're finding is that it's the third sector that are leading and pushing and providing the sets of skills and material that are actually needed out there, and that is a struggle for us both nationally and locally and regionally.

I think in terms of IAA generally, there are some very good models for how that's working, and there are also probably some poor examples of how that isn't being co-ordinated in a true partnership perspective. In terms of Young Carers in Schools, that's probably a good example of how that works collaboratively with education, with the local authority, with health, with local carers services and with carers directly about how a model can be put in place to make sure there is effective information and advice right up front for young carers. There are similar models that are then replicated, not just for young carers, but there's the Triangle Of Care. There's also the work within GP organisations across various aspects of various areas within Wales. In terms of the Welsh language, I think that that is responded to very well locally, rather than from a national perspective. So, my colleagues in north Wales respond locally and are able to respond to the demand that is there in north Wales, and that is, I suppose, responding from a regional footprint where that's needed. Rather than a benchmark where everybody does the same, it's responding to need.

I think the other issue around IAA is that there's often a lack of transparency about what—

Sorry, Chair—sorry, can you explain, perhaps to nobody on this committee, what IAA is?

Information, advice and assistance. It's often the fact that carers won't want to go to the local council for support. They'll see that almost as a failure in their ability to care, and they're concerned about what people might say, both from the local authority and other people if they know they've gone to a local authority. So, I think we've got a large piece of work to do around reassuring people what support is available and what that means in terms of their everyday experience of caring and that that should be helpful to them and not an assessment of their ability to care; it's supporting them to continue to care.

Thank you. In response to your point about the Welsh language, I would point out that, in terms of numbers, there are more Welsh speakers living in Cardiff than there are in many parts of—. So, I don't think we should be satisfied with public authorities taking a regional approach, because increasingly there are more and more both young carers and adult carers living all over Wales, and when you're under that kind of pressure certainly receiving a service through your language of choice can make a real difference to the outcome for you.

You've already talked about how the opportunities to identify carers and start the process of offering support is getting lost in the NHS, in your view—that that's not happening. How do you feel the role of the NHS has changed in relation to identifying and signposting carers since the Social Services and Well-being Act (Wales) 2014 came in, and the Carers Strategies (Wales) Measure 2010 was repealed? I should declare a bit of an interest there, because the previous piece of legislation started with private Member's legislation that I initiated, so I suppose I've got a bit of emotional attachment to the old law. But do you see there having been a change in the way the NHS is dealing with this since that legislation changed, and what do you think we could recommend to Government about how that NHS role might be strengthened, if that's necessary? 

10:50

I think there's been a step back from the health sector since the social services and well-being Act came into being. It seems to me that because it says 'social services' in the title of the legislation, there is an expectation that that's a social services responsibility. And so, one of the recommendations from Track The Act was that the health sector is given more responsibilities, again through the legislative process, to identify and support carers. Having said that, for the first year this year, we did ask local health boards to provide information to the Track The Act survey, and there are pockets of really excellent work going on within the health boards, particularly around GP surgeries supporting carers, hospital discharge. So, I think we can't say that it's all awful, but there's certainly a need to improve consistency and recognition within health.   

There's no strategic direction now—that's the difference. There's no requirement for health to do anything other than work in collaboration under Part 9 of the Act. So, that's all gone with the end of the carers Measure, and Carers Trust Wales co-ordinated a carers leads group from local health boards recently to listen to those people specifically to get their messages on this. They're very clear that there isn't a strategic direction. So, most of their posts are being paid from what was called the transition money post carers Measure, which is about £1 million that has gone and doesn't really sit anywhere, and it goes to support those posts. But in terms of the priorities and the roles—so, it could be patient advice and liaison roles, it could be dedicated carer leads—they're often part time. They don't have the same level of strategic influence. They were never massively strategic at, sort of, board level previously, but they've definitely gone down. And their message to us was very clearly that if it's actually going to change, it needs strategic direction from Welsh Government. 

Thank you, Chair. In regard to the static level of assessments that there are is the moment, are you satisfied—bearing in mind what you said earlier in terms of the 40 per cent increase—that that is satisfactory, and what can be done, possibly in three points—that's from any of you—as to how we actually progress the numbers of assessments? 

I think the first issue is probably around knowledge, so knowledge both within carers of what carers needs assessments are and what that affords people in terms of support, but also knowledge within social work—people who are actually doing the assessments, and whether that is done in the best possible way. 

So, we'd like to see a national public awareness campaign around carers and caring. 

And then, the next element is around the work that Social Care Wales is doing at the moment, which is around a toolkit to improve the process around the 'what matters' conversation and carers needs assessments. I think that would really help to improve the process around carers needs assessments. 

I was under the impression that there already was a toolkit. Are you saying that there's not?  

No, there's not. It's going to be in the new year. 

Okay. So, it's on schedule to happen, so that needs to be rolled out across Wales, effectively. So, outside of knowledge and the public awareness campaign, what else needs to happen to increase assessment levels? 

The critical issue is funding, because the reality is that a lot of social workers, or people undertaking the carers needs assessments, will be concerned about raising expectations about what support is available, because in many cases that support isn't available. So, I think if we had more funding, we could both increase the number of carers assessments and be confident about the fact that there would be services there to support carers. 

I absolutely endorse the points Claire has made. Assessments need to be done properly, at the right place at the right time, and they need to take long enough, and they don't necessarily need to be delivered by local authority staff. Everything else that Claire has said I completely endorse. But I would also make the wider point that—again, wedded to Part 9 of the Act a little bit today, because it's so important, I think, in terms of collaboration and prevention and all the things that we've talked about—what is really important here is that we find a way to work with carers, identify and support carers in the community, prior to the need for quite often what is a crisis point and a formal assessment. Of course, there should be the requirement for the active offer from the local authority under the duty, but so much more can be delivered prior to the need for an assessment at all. And when you investigate and talk to carers—when you investigate this statistically and when you talk to carers—they very often give you that message.

There are many things that practically do need to be delivered, and the scale of that is the responsibility of the local authority, to deliver that, but in many, many cases that's not the case, and it can be provided by local third sector services, who are, let's be honest, often more public, more present, more trusted, and they are the experts. And I think that we need to be working with the carer experts, given the particular pressures that we have, as well as making sure that every contact with a carer at a professional level counts. 

10:55

So, you'd obviously like to see more third sector engagement with local authorities on a more collaborative, professional level. Some carers that we were honoured to speak with at a recent round-table addressed a number of these issues with us, and one of the points that was actually made at the table that I was at was from somebody who stated that she wasn't actually clear that an assessment was taking place. What's your comment on that particular issue, because it was a theme?

It's absolutely the case, isn't it, that, basically, there's a lack of understanding when conversations take place between a social worker, or whoever is providing support, and a carer, about the status of that conversation. And it's often the case that people don't know that they're actually going through an assessment. And it might be that they're perhaps having a 'what matters' conversation, and in some local authorities that is the assessment, and in other local authorities that's the precursor to the assessment. 

The other issue is—

So, I'm hoping, through this toolkit that Social Care Wales is going to create, that there'll be more clarity and more guidance about how carers should have that explained to them—the status of the conversation.

I also think that there's a big step, almost coming from what Simon was saying, before we get to that assessment stage. So, the figure of 2,000 support plans has come out of those assessments. There are actually more support plans in place across Wales than that. We supported 2,000 carers in Gwent last year. Every one of those has a support plan, but that isn't a carers assessment. So, that support plan is meeting need, and, actually, that is probably preventing the need to get to an assessment. So, there's a recognition that not everything—. Assessments are important, but at the moment they're being used at crisis point, like Simon said, but, actually, there is a level beneath that where there are support plans and there are 'what matters' conversations. The third sector have been involved in that training around what is a 'what matters' conversation and how we then put in place—

When you do your carers assessments, do you then link in with the local authority and let them know that you're doing that, or are you doing this independently of the local authority?

So, these aren't statutory carers assessments—

No, I understand that. This is what you're doing. But are you then flagging up with the local authority that, actually, there's an issue here that they need to be aware of?

So, it depends on the local authority and the relationships between the local authority and what's been commissioned by them. I'll give you an example in Caerphilly. We are commissioned to deliver a mental health advocacy service for carers. If our service is meeting that need, we wouldn't then need to make a referral for a carers assessment. If we feel that there are needs that we cannot meet, we'll then refer to the local authority for a wider carers assessment. 

So, in that regard, it's extremely preventative in terms of that spend, is it not?

I need to ask now in terms of your assessment of young carers' level of care being appropriately assessed. So, what is your view? I believe that there is a feeling that there is a lack of clarity about the extent to which assessments consider whether the level of care being provided by a young carer is appropriate. Now, that's being picked up elsewhere in terms of the forum that we attended as well. Obviously, if on somebody's list it says that this young carer has been assessed, et cetera, and is receiving care, it might be highly inappropriate. So, how can that be better identified and targeted?

The code could be revised. When you compare it to the Care Act 2014 in England and the Scottish legislation, there is a very specific difference, because they are specific about what 'appropriate' means, in terms of the expectation of the young carer themselves in that caring provision, and what is not appropriate. That is not made clear in Wales. So, that's a very practical thing that could be done. But, then, in terms of delivery, again, much of this is about funding and services and the join-up between public services and public sector bodies and the third sector. Gareth, do you want to—?

11:00

Yes. Particularly young carers' services and that support that is provided and that assessment of need. One of the biggest issues is how young carers' services are funded. There is a large amount of young carers' services funded by Families First, which actually has its own framework of outcomes and assessment, which is irrelevant to young carers' needs as it's based on the anti-poverty agenda. Ultimately, on the young carers' needs, the commissioner is saying, 'You need to assess these needs, because that's an anti-poverty need', but we're actually saying, 'Well, that doesn't match a young carers' assessment needs.' So, there is no—

So, how can that—? Obviously, this is a groundbreaking flagship policy and there's great acclaim in many circles for it and it's had a lot of evidence-based outcomes that are positive. That, to me, is worrying, so how are you in your roles actually advocating that here today and how can that be changed? Because we're obviously missing something if that information isn't being transferred in the appropriate way. How can that be improved?

We can identify more young carers, firstly, at a national scale. We're working with Welsh Government currently to try and develop a young carers identification card—partly through the identification and support that that would bring to the young carer themselves, and the support it would bring to their family, and partly because of the links that that will create with professionals. But that again needs the links that I was talking about that were absent early in the case of Lucy. We need them to be there. So, there needs to be a level of resource, certainly at a local and regional third sector level, and then a levelling up of recognition identification at a national level. But those commissioning strands do need to be more appropriate to understand young carers' needs at the regional level, and currently they don't exist. 

And where it works well is when it's actually based on a strategic plan from the local authority or from a region. When it is just based on the commissioning intention of a funding stream, it doesn't work. When you actually have a strategic plan in place by the local authority, and then, actually, each part of the local authority and health board work towards that plan, it makes a big difference. 

Finally, if I may, Chair, in that regard, and in terms of rolling out a high-level strategy across Wales, what needs to happen in terms of spreading those pockets of best practice into a more mainstreamed policy?

There's definitely stuff around evidence gathering and information that is already being delivered very, very well in different areas, and actually bringing that together to give that best example of how young carers' services can work and how effective they can be. I also think the biggest change is around the funding of young carers' services, and that would be much more of a strategic funding source rather than—there's no direction that it has to be funded in each local authority in how it should be funded.

So, with the £30 million announcement around social care you would expect to see some strategic thought process around this issue.

A critical issue is that we know the number of carers is going to increase in Wales, yet we haven't got a strategic plan around what we're going to do to support those carers to continue to care. Ultimately, we need more longer term planning, both at national level within Wales and at a local and regional level. 

This particular question is to Carers Trust Wales, but you're more than welcome to jump in as well if you want to. You make the point in your written evidence that the provision of good local services for carers can reduce—and you've touched on this—the need for local authority assessment and formal support. Can you tell us a little bit more about that? I suppose I've got a little bit of concern, if people haven't got a formal assessment, about the risks to the sustainability of the support that's provided. You've also suggested that the use of the third sector is potentially a very cost-effective way of providing the support that carers need. So, could you tell us a little bit more about that sort of balance between a formal assessment that theoretically gives people a right to services, and the kind of more informal approach that the third sector would take to working with a carer, and a bit more about the possible cost benefits of that sort of preventative approach of you stepping in, perhaps as a third sector organisation, before a formal process is needed.

11:05

Absolutely. I'll ask Gareth to talk about some of the detail of that in terms of the formality or informality of the assessment, the processes at a local and regional level, and then I can talk very briefly about the wider picture in terms of the cost savings and the value issue. 

So, just picking up the one point around a carers assessment giving you that right to the services afterwards—I think that there is a mix, actually, that doesn't necessarily happen, and, actually, when it does, all they're doing is referring back to the preventative services anyway. So, for instance, somebody might have a carers assessment that says, 'Okay, they need respite.' Well, they'll refer back to our service to go and deliver the respite when there probably wasn't a need for a carers assessment then if that was a true preventative service. So, once they get past that stage, it's actually referred back to preventative services. Preventative services are there and they are managing that waiting list for assessments in a way and stopping and helping the demand and the need for assessments. So, just to highlight that, actually, once you get there, there isn't necessarily any additional help—there's no budget that comes along. And I think that is one of the challenges of people who are carrying out the assessments—to be able to actually respond to the need once it's been identified, because services are already commissioned, so that's the real challenge on that.

In terms of the mechanisms for assessments, that does vary, particularly for young carers and young adult carers and adult carers in general, in terms of what the process is for assessment. I think we could probably sit here all day and talk about that, but there are some examples where information is given upfront and people are then referred in and there is an officer within the local authority that does that. There is somewhere that's commissioned out to the third sector and they provide the upfront carers assessments early on to understand that need quite early. 

I think there's a real professionalism and expert culture in the third sector around carers, but they're struggling financially across the piece. Carers' services have closed in recent years, at exactly the time when unmet need is going up. The level of formality and the quality that I see across Carers Trust and other third sector services in supporting carers is fantastic, but it's not joined up enough and it's not well resourced. So, a young carer officer might be working on two days a week—they might be using reserves to actually manage, they might be using a lottery grant to deliver core commissioned services because it's just not there. We know, as Gareth said, that the services post assessment—the services aren't there for people. I think that's leading into a downward spiral where, actually, you're seeing—I don't want to use this because it sounds overly negative—but gaming, in terms of the amount and the type and the nature of the conversations that are going on. Plus, of course, you're getting information, advice and assistance, and the issue is that social services are very much seeing that, and they're channelling that directly back to local carers' services, which is fine at one level, but it's clearly adding pressure because there isn't sufficient resource.

But in terms of the value and the point I wanted to make around that, there is some considerable evidence around the value of investing in carers' services per se, not simply in the third sector. There was some work the department of health did in the last couple of years that talked about extra spend on this particular study that they did with local authorities in England—extra spending on unpaid carers specifically, saving local authorities £429 million—sorry, a spend of £293 million saved councils £429 million in equivalent replacement care costs. There's work that's been done by us and an organisation called Baker Tilly and the department of health that talks about £1 getting £1.47 back in terms of the spend for the local authority. There's also evidence around what's generally called the social return on investment, the support in the community, showing, again, a sort of 1:4 ratio.

So, there is evidence out there that shows that by investing in this resource upfront in the community, you can actually not just provide a more trusted professional service, and putting the necessary safeguards in place to make sure that carers' rights are safeguarded and they are identified and supported professionally, but we're in the middle of the two at the moment—. There are some fantastic services and some fantastic people in local councils trying to do and amazing job, but both are struggling. If you were to ask me where resource was to be directed, it should, absolutely, be at the preventative element of this work.

11:10

I was just going to touch very quickly on—I think one of the words you used was 'sustainability'. I think that, if you work within the third sector and, particularly, within cares services at the moment, is the biggest risk to all those services. The services that I run across nine local authorities in south-east Wales—most of those I would class as non-sustainable. They are year-on-year funding, never committed—you can never plan for them effectively. Some of the additional funding, in terms of integrated care fund funding, is completely unsustainable for a service to be able to deliver when that's commissioned, when that's part of the third sector, but also the local authority, in terms of the regularity of the money and the strategic intent of the money. We've seen local services close down where there is no sustainability. Some of that is because carers' services are being badged within domiciliary care services, and being called the same. So, then, actually, they're going within a framework of domiciliary care services, when services for carers is completely different to a domiciliary care service, and that is a real issue in terms of the future sustainability of those.

I just want to explore, Chair, if I can, a little bit about the question of assessment, because I'm slightly picking up from some of what you've said that assessments are happening almost at crisis point. And you talk about the third sector services preventing people getting to the point when they need an assessment. Going right back to the previous legislation, the aspiration was that everybody got an assessment when they first became a carer. That would then enable them to access services further down the line. I suppose I'm a bit worried that we're getting to the point, in some places, where the assessments are only coming when carers are reaching a point where they can't manage anymore.

I think there is an element of saying—I can't remember who said it earlier on, but there will be a lot of carers who say they don't actually want to get to the assessment stage anyway. They want to just be able to access the support that matters to them, which is important to them. There are some people who will always need that assessment and need that statutory support after that. But what we hear from carers is, actually, they don't want to get—. That might be because of how assessments are messaged and because of the messaging and because of the fear of social services involvement, which is absolutely right in some cases, but there are a lot of carers who will tell us, 'We don't need an assessment, we just need a little bit of help.'

It also goes back to the point about identification. So, it's often the case that a carer won't identify until they're at crisis and they enter a health setting. And then it's at that point somebody will say, 'Well, you're a carer, you should have a carers needs assessment.' So, it comes back to the fact that we need to try and get more carers to recognise earlier on in their caring journey that they are a carer.

There was a really interesting interview on Radio Wales recently, on Good Morning Wales, where, after some interesting Age Cymru evidence on the numbers of assessments, they talked to two carers that we hadn't spoken to and our organisations hadn't spoken to. There was one older carer and one carer in her twenties, and they were both talking about a formal assessment process in relation to the evidence that was provided. The older carer described going through the process and not receiving any services from that, twice, and that that being something that she would now not go back—. It wasn't a particularly pleasant or unpleasant experience, it was just that there wasn't sufficient time given to it and nothing came of it. She wouldn't be going back because of that. The young woman described the fact that, entirely unplanned, that she had local carers—. Her description was, 'We had local Carers Trust services. So, the support I need, I get locally.' And then she was describing Carers Trust sir Gâr in Carmarthenshire, as it happens. And she was saying, 'I might consider it at a point in the future, but because I was put in touch with this particular local service, they support my needs at the moment.'

It's quite an interesting snapshot of the examples—I've no idea of their respective ages—and the answers they were giving when specifically asked about their experience of a formal assessment process.

Just the other point to make on the assessment and crisis point as well is that we know a lot of carers are actually waiting a long time for an assessment. So, it might be, say somebody's become a carer and they're caring 50 hours a week—to wait six months for a carers needs assessment is a very long time, and by the time they get to that assessment, they could well be at crisis point. 

A similar theme, carrying on—Julie Morgan's got a couple of questions.

Yes. I was going to ask you about the resource challenges facing local carers' support services. I think you've covered some of that already, so I don't know if you've got anything else to add on that.

11:15

Only that it's vital and it's not there. Particularly given Gareth's example around sustainability, I think that the current funding mechanisms don't support sustainable carers' services. With sustainable carers' services, and with the right profile in communities—. We know that there is a plethora of fantastic third-sector organisations, but with a higher profile then we could, actually, move towards a more genuinely preventative service, rather than the going from year to year that they have to do currently.  

Right, thank you. I don't know whether there's anything about providing services in rural areas that you could tell us.

We provide services particularly in Monmouthshire and the Vale of Glamorgan, which are two reasonably rural areas. So, just to touch on that, in Monmouthshire I think, coming back to that, it's more costly—it costs more money to deliver particularly respite services in rural areas. It's also more challenging to provide the real preventative services in that area, in terms of having the locations and bringing carers together so that they're not so isolated. 

There are a few models out there that work, in terms of a hub-and-spoke model to deliver services, but, again, it's about investment in those. To be able to do that, local authorities are moving towards more well-being hubs, et cetera, within each local authority, but that is particularly challenging in rural areas, where there isn't the investment in transport and there isn't the investment in the other stuff that allows people to get into those services that are there.

I wonder if it would be helpful just in terms of some of what our 'State of Caring' survey found out over the last year, in terms of carers' perspective on their own situation and, I think, the impact of not having some of the services. So, 75 per cent have suffered mental ill health from caring; 61 per cent have suffered physical ill health; 40 per cent have given up work to care; 34 per cent said that they're struggling financially; and 46 per cent expect their quality of life to get worse. I think that's just the impact of not having some of these services resourced.

There's no plan to support these services. There is no national monitoring or resource plan—even a basic one—to say that this is a good thing. It's entirely dependent on, now, the way regional partnership boards interpret their remit and the way they work, but that's it. So, these services are not working on the basis of a plan or any structural funding from Welsh Government, they are operating on their own as independent charities, with links to similar other organisations and no links, and they are struggling to meet unmet need, but, in those circumstances, doing an exceptional job.

Thank you. What about regional partnership boards and the integrated care fund? What do they contribute towards developing carers' services locally and regionally?

There's a number of examples here where there are some good examples of how ICF has worked for carers. There are, probably, many more where the use of ICF funding hasn't been strategic and where it's actually almost impossible to use because of the parameters that are set around it. I can give examples where, actually, there are multiple bids going in that have been researched for a year or two, in terms of services for carers, but, actually, the issue with ICF funding is that it's tied up within core services within local authorities, and they have to use that money to supplement an NHS ay increase. There are real, live examples of where that has happened.

I'll give you an example: I attended two meetings last week where we were asked to submit bids on Friday. I attended these meetings on Thursday, submitted bids the next day for ICF funding for this year, which has to be spent by the end of March and cannot be carried over. So, we, as a local service, are going, 'Yes, we can deliver services for carers, but not in these timescales.' So, then, I've got to think about, 'Can I release a member of staff from another service that is delivering amazing services?' I'm a service-delivery organisation—I can't turn down money to deliver services for carers. So, how do I do that strategically? There's no plan around that—we're having to respond to that every single day and every single week.

ICF has the potential to be amazing, but, at the moment, with restricted ability to plan that money, and to be in November and still not have plans to spend this year's money, and then, actually, to be asked to think about what underspend I want to use by March as well when these bids get turned down—it's just unmanageable.

11:20

So, do you think the short notice that you've been given on this is—? Were all the partners in the same boat, or is this a question of treating the third sector as last in the queue? 

Both. So, other partners—health boards and local authorities—are in a similar situation. They get the allocation—there is an indicative allocation early on—but, actually, the reality is they can't commit to that spend before April. So, local authorities are then continuing to fund core posts themselves through ICF, so they are planning late. They then get the allocation later on in the year, which then has to be approved by Welsh Government, which has only just been approved now for this year. Then, what happens is the third sector are not engaged in that first part of the conversation effectively enough, so then it's, 'There's loads of underspend. The third sector respond better to underspend, so let's see whether they can spend £50,000 or £100,000 by the end of March. We can't, because our recruitment issues are such it takes us months to recruit. The third sector can recruit because they'll just make some changes and respond to it.'

But I would make the point that Gareth's organisation at least has some ability to respond—to be in that meeting room—but there are many small third-sector organisations, supported by carer experts and carer focus in Wales, that would not have the capacity currently to have been in that room. They are struggling to provide the quality of support because there is no planning or resource framework—even a basic one—that comes down from Welsh Government. That is an absolutely key point.

Yes, I think you've answered quite a bit of what I was going to ask, actually, because what I was looking at was the commissioning of services from the local authority. In your paper, you did identify a number of issues around that. You talked about—you've said it several times—the lack of strategy. You talked about the RPB membership and that you've got no financial autonomy, and that there's a power imbalance impacting on the quality. So, what is it that you think that you could do or that the Welsh Government could do—that we could do—to overcome some of those difficulties, because they're clearly writ large in your evidence? You've mentioned it a few times, so what pointers would you give us to how some of those things could be overcome?

I think one is true, meaningful engagement of the third sector. I know that's a sweeping statement—if you could solve that, it would be amazing.

Just on that point, because that is really important, you mention the fact that you don't have a seat at the partnership boards, for instance. You can't have every third-sector organisation sitting on them, so how do we overcome that? In my constituency, for instance, we've got a fantastic organisation called VAMT, or Voluntary Action Merthyr Tydfil. So, do you see an overarching third-sector body as being somebody that could perform that role?

If there was a strategic plan to prioritise preventative support for carers across Wales that required regional partnership boards to deliver that work according to a certain framework, then that would go a considerable way towards doing that. That's about prioritisation—that, in itself, would happen. Currently, we are dependent on the way regional partnership boards interpret this.

In terms of the politics of it, there's an unpaid carer representative on every regional partnership board—they are a carer volunteer in that sense. So, the commissioning processes are not working for carers, but there's no other strategic priority to say how—even that there's a spend that could be commissioned, planned and worked in partnership with the wide range of organisations in the area. It's not about our organisations—it's about all of them, and about regional partnership boards having responsibility and a requirement to do that because Welsh Government say it's enough of a priority.

I was just going to say that what the carers' representatives will often tell us is that by the time it gets to the regional partnership board it's often a fait accompli, and their ability to influence is limited. So, they're trying to link more with the partnerships below the regional partnership board to influence some of the discussion that takes place there.

No, that's fine. Some of the challenges, in terms of my sweeping statement, sorry, are that I think county voluntary councils in general have a very difficult job at the regional partnership board. If you think about the other partners around the table, they're actually representing a bigger workforce and a bigger community—one person sitting there as the chief exec of a CVC—than the rest of the people in the room. 

I'll give you some real, practical examples of how I think that could change. We have one example in Cardiff, actually—in Cardiff and the Vale of Glamorgan—of how we have worked with the local authority, the health board, and the CVCs in Cardiff and the Vale of Glamorgan, to develop a model for carers services around carer engagement and carers hubs within the area. We researched that with carers. We had an expert panel of carers set up to research that, and the model was put together. This was presented to the regional partnership board. I had written that. My team had written that. We were asked to submit a bid to ICF funding for that. They came back and they had some questions about the model. So, I said, 'Okay, we'll come along to the RPB and have a chat with you about what the model means,' because you've only got so many words to write about what has been two years' worth of research. 'No, you can't come; CVCs are the only ones allowed in the room, because they're your representatives.' We're the experts here, we're the carers' services here, we're the ones that have written this model, we're not allowed to attend that meeting. So, actually, having the experts in the room—not all the time, I agree, otherwise there would just be 100 people in the room all the time—but if you're going to be considering ICF around—

11:25

So, having somebody there to have the appropriate discussion at a particular point in time would be helpful, rather than you being—

Absolutely, which would happen from a local authority, because, actually, the local authority would send their most appropriate person to present their bid. In the third sector, you wouldn't; it's, 'No, the CVCs are there; you're represented.' I feel for CVCs in that respect, but actually they don't have the mechanisms to be able to then fully consult with everybody in the third sector—

Yes. So, giving the CVC the authority to be able to say, 'On this occasion, actually, what we're going to do is bring so-and-so in.'

Okay—got that point. My final question, Chair, if I may, is around the question of service models that you've just touched on, and what is the most effective. You've set a piece out in your evidence around that. What, in your view, would good practice look like in the delivery of a service model, and how can we promote that?

In terms of the model you've described, I'm happy to speak, but I just think if—

The hub-and-spoke model really is a true partnership integrated model—

This is the English model.

So, there are some examples in England where it's happening as well, and we've taken that model to think about how it can work inside the Act, within the RPB framework. The model in particular looks at—. It isn't a stand-alone model, but it is a single point of access for carers. It is the ability to break down the barriers of having to go to Carers Trust services for one, go to a local authority for this, go to Age Cymru for this, go to Alzheimer's for this support—

A one-stop shop, but breaking down the barriers between third sector, between the local authority, where you have that single front door for a carer to come through, and then actually there is that real behind-the-scenes stuff that a carer doesn't need to see, about the politics of who funds what. That doesn't need to happen. But that there is a single front door for a carer to walk through—virtually as well, not just a physical front door.

Absolutely, so that a carer can go, 'I just need support; I don't care who pays for it.' It is just about saying that there is a single front door, there is a hub-and-spoke model here that says, 'We will reach out into communities and work with other well-being hubs that work with the local authorities, that work with GP services, that are able to just do that back-office stuff that a carer doesn't need to be involved in.'

Okay. We're nearly out of time now, so Rhianon will have the joy of rounding things off.

Thank you very much. I've got a specific question around carers and respite, and then a general question that I would like to get an answer to, if I can, before we finish. So, in regard to the pressures on local government and the extreme pressures on social services across Wales, what is your view in terms of the scenario across Wales at the moment, where respite is actually being looked at in terms of non-statutory, and is being, in some cases, looked at to be cut? Is it important to you that carers have access to respite?

Yes, massively. Carers say this. We are doing a piece of work at the moment, which you could potentially investigate, which is delivered to Welsh Government, in great detail, talking to carers across Wales about this. Their message is that, absolutely, they need a variety of different respite. It certainly needs to be more flexible, but, most importantly, it needs to be regular and consistent, and it absolutely isn't.

So, in regards to Scotland—. In regard to other nations where they have a different approach in terms of respite care, do you think we should be following their lead?

I think we should be looking at it and thinking about that, but before we look at new legal requirements, we should be looking at resources, because unless we're prepared to look at how we are able to implement the legal requirements we're putting in place without resources, it will not happen. Resources are absolutely key, with breaks, with respite, and with the regularity that people need them.

11:30

Which brings me very nicely onto my final question. In regard to the discussion at the moment around a levy for social care provision, outside of the millions that have been provided around social care within this budget scenario at the moment, do you feel that that is a way forward?

I think it may well be a way forward. I am concerned with the implication that a levy is a panacea for social care. I think social care and the issues around it—. Carers must not, firstly, be seen purely through a social care lens, as I think we've described today, in terms of all public professionals being supported, particularly across health. I think a levy is one mechanism and certainly should be reviewed, but as we keep, potentially, moving the mechanism with which we support social care to new pots, I think that there is a risk that the services—. Never mind the crisis points that the carers are getting into, their crises are often, as you can imagine, very intimately connected to the people that they're caring for and their family situation. We know that the services for those people are, clearly, not there, and there are some real problems with the eligibility criteria, both for them and for unpaid carers themselves. So, I would be concerned that we don't—. Investigate a social care levy: it needs to be done very much with our eyes open and about what it could potentially mean.

Very briefly, on the balance between resources and statutory requirements, of course, if an organisation is statutorily required to do something, they will on the whole find the resources, so I'm slightly putting it to you, Mr Hatch, that it's kind of horse and cart, isn't it? I mean, we're getting to the point when local authorities are moving towards only providing the things that they're statutorily required to do, so isn't that an argument that at some level we ought to be statutorily requiring them to provide respite, as they do in Scotland?

Excellent. It's been an excellent session. Can I thank you—the three of you? Excellent. And the excellent evidence we had beforehand as well. It's very detailed, and all of it will be amassed in the final report of this committee. You will receive a transcript of this debate as well, for you to make sure that you're happy with it—that it was actually an account of what you actually did say. Okay. So, thank you very much indeed. Thank you. Diolch yn fawr.

We'll just have a two-minute break while we get the other witnesses in. Two minutes. Okay.

Gohiriwyd y cyfarfod rhwng 11:32 a 11:37.
 

Gohiriwyd y cyfarfod rhwng 11:32 a 11:37.
 

11:35
5. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Chomisiynydd Pobl Hŷn Cymru ac Age Cymru
5. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with the Older People's Commissioner for Wales and Age Cymru

Croeso nôl, felly, i'r sesiwn diweddaraf o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Erbyn rŵan, rydym ni wedi cyrraedd eitem 5, ac rydym ni'n edrych ar effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â gofalwyr. Hynny yw, roedd y Ddeddf yma i fod i drawsnewid y tirlun i ofalwyr. Rydym ni'n cymryd tystiolaeth fel rhan o'n craffu ôl-ddeddfwriaethol ni fel pwyllgor i weld os ydy'r trawsnewidiad yna wedi digwydd.

Y sesiwn dystiolaeth ddiweddaraf nawr: o'n blaenau ni, mae Comisiynydd Pobl Hŷn Cymru a hefyd Age Cymru. Felly, i'r perwyl yna, rydw i'n falch iawn o groesawu Heléna Herklots, Comisiynydd Pobl Hŷn Cymru—bore da, Heléna—a hefyd Victoria Lloyd, prif weithredwr Age Cymru. Yn ôl ein harfer, diolch yn fawr iawn i chi am eich tystiolaeth ysgrifenedig ymlaen llaw—bendigedig, mae'n rhaid i mi ddweud, ac yn fanwl—y ddwy ohonoch chi. Diolch yn fawr iawn. Yn ôl ein harfer, achos cyfyngiadau amser, yn sylfaenol, awn ni'n syth i mewn i gwestiynau, ac mae Helen Mary'n mynd i agor. 

Welcome back, therefore, to the latest session of this committee's meeting here at the National Assembly for Wales. Now, we have reached item 5, and we're looking at the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers. This Act was supposed to transform the landscape for carers. We're now taking evidence as part of our post-legislative scrutiny as a committee to see whether that transformation has occurred.

The latest evidence session now, and before us we have the Older People’s Commissioner for Wales and also Age Cymru. So, with those few words, I'm very pleased to welcome Heléna Herklots, the Older People’s Commissioner for Wales—good morning, Heléna—and also Victoria Lloyd, chief executive of Age Cymru. As usual, thank you very much for your written evidence—excellent, I must say, and detailed—both of you. Thank you very much. As usual, because of time restrictions, basically, we'll go straight into questions, and Helen Mary Jones is going to open.

Good morning, both, and thank you, again, for your written evidence. I'm going to focus in a minute on respite care, but, first of all, there's a suggestion in the evidence that care services are focusing more on people with the most complex needs and that that's having an impact on older carers. So, in your view, do the eligibility criteria under the social services and well-being Act work against the interests of carers? 

I think there's a couple of issues here: (1) because the eligibility criteria are quite tough in the sense of the level of need that you need to demonstrate before you get any services, that has an impact on the services that somebody gets who needs that care directly. So, it means that, if you're caring for someone, say, with moderate need, you may not get that additional support for the person you're caring for. So, if that care isn't there for the disabled person or the other older person, it falls on to the carers to pick that up. So, there's both an issue about the eligibility criteria for the person who directly needs the care and then also how the carer can themselves access support for their caring role. 

I think that's quite important because the carer themselves might not actually have a need themselves, but then may also have issues that are perhaps not then taken into account in any assessment of the person that's being cared for in the first circumstance, and then, depending on what care they get, that can have a huge impact on the life of the carer, particularly if they haven't had a carer's need assessment. So, there's that kind of interaction between these two individuals, and that 'can and can only' test, I think, can have a huge impact.

11:40

Thank you. To turn to specifically looking at respite care, then, what are the particular needs of older people in terms of respite care, both in terms of what are the particular needs, perhaps, of older carers as well as an older person who's being looked after?

I think it's important to think about older carers and the diversity of older carers. So, if we're talking of people between, say, 60 and 100, you could have people in their sixties caring for older parents in their eighties or nineties, but you could have, typically, a couple in their eighties, mid eighties, caring almost interdependently for one another. So, that issue about people understanding they're carers is, kind of, a big challenge, and I know you heard earlier about that.

So, in terms of respite, what we've found from the work that my office has done over the years is, first of all, a lack of awareness around respite—so what it is, how to get it. And it's very timely, because we produced a guide just this week, actually, on accessing respite care because we know that people don't know about it, don't know the routes to get it, or the type of respite that there is. There's also, though, a big issue about, if you like, the supply of respite, and this really touches on the wider issue around the capacity at the moment within social care to have the services that people need, and respite is a crucial one. We know how important it is for carers to take a break. We know about the huge health impacts, detrimental health impacts, particularly on older carers. So, without that respite, people's health is deteriorating, people's physical and mental health is deteriorating. So, it's a really critical area, and, in a way, I think it shows up the wider issues about the current stress within the social care system. 

Yes. We've heard already from the evidence session we had earlier about the amount of carers, the amount of care assessments, and, I think, for us, in terms of respite for older people, it's about not having to have that fight to get it. It needs to be timely; it needs to be at a point where it can avoid the crisis. And it's about the types of respite that are available, because not everything is suitable for everybody. The person that's receiving the respite, it has to be suitable for them. We did some work with the older people’s commissioner's office around the needs of people living with dementia, and it seems that services can be provided as a one-size-fits-all—it's about a group or it's about a session, whereas, actually, people are looking for more individualised approaches, things that stimulate on an individual level, not, 'We all go along and sing', because that's fantastic for some people but, for others, it's never been something that they've wanted to do, and it's not something that they want to start now. So, I think—

I'm not, either, no. [Laughter.]

So, I think that's really important, and then, when you get down to things like the sitting services, it's about consistency—so, particularly if you're talking about people living with dementia, having people come in that are familiar is really important in terms of that whole quality of experience. So, I think there are quite a lot of things, but it all comes back to an individualised approach of what's right for that person and what's right for that carer. 

Sorry, Helen. As an aside, Members have just received a copy again of that report—well, not 'hot off the press', but, I suppose 'cold off the press', it being an older report. Sorry, Helen.

Your predecessor's report, 'Rethinking respite', called for some more creative thinking around the sorts of respite that might be available and referred to the Respitality schemes in Scotland. Could you tell us a bit more about that need for more creative forms of respite care, and what Wales can learn from that Scottish example?

Yes. I think there are some really interesting examples, not just in Scotland, but here in Wales and other parts of the UK, and, indeed, further afield, and I think it's focusing on—. If we think about what outcomes somebody wants from respite and start there rather than automatically thinking, 'Well, what services have we got?' So, the Respitality example, I think, is interesting because it's a different sector getting involved. It's the hospitality sector in Scotland who were looking at what they could do, actually, to help carers, and recognising, in low season, in down time, actually, they've got facilities, they've got hotels, spa facilities, quiet times in restaurants and all of that, working with local carers centres to offer those sorts of opportunities to carers, which is a great example, isn't it, of a community approach, recognising there's a need and engaging the commercial companies, if you like, in that. So, I think it's about thinking quite creatively and imaginatively, and maybe thinking beyond public sector and third sector indeed, to think about whether there's a role for the hospitality sector here or businesses to support. So, it's just one example really of an approach, which is to try and think from the outcome. So, if the outcome is that somebody needs a break, somebody needs some help, somebody needs to feel better about themselves, the answer to that might not be the leisure centre; it might be the gym in a hotel that is nearer to you, for example.

11:45

Thank you. The 'Rethinking Respite for People Affected by Dementia' report proposes a respite outcomes map. Can you tell us a bit more about that idea and about what sort of response you've had to that suggestion?

Yes. So, this was really to again try to think of a way to encourage commissioners and providers to think about respite in a broader way, so not starting with, 'What are the services that we have and how can they be used for respite?', but 'What are the outcomes?' So, the outcomes framework really looks at a number of those outcomes, which link into the national well-being outcomes. So, things like: I have opportunities to have a break on my own or together; I have opportunities for social contact. And we put that in the guide [Correction: 'report'] as a way of trying to encourage public bodies, assessors and commissioners to think differently. I think it's a little early to say, because the report was only out earlier this year, how much of an impact that's had. I did, for example, a workshop at the recent social services conference and had some very interesting discussions there, both with carers and commissioners of services, about the extent to which people were even beginning to think in that way. So, I think it's too early days, but it was to try and really refocus the approach much more on starting with the individual, starting with the carer and thinking about their outcomes.

That Respitality scheme sounds fantastic, doesn't it, but that depends on it coming from the community. So, is there any chance of anything like that coming from the community in Wales? Have you heard of any initiatives like that that could be encouraged?

I haven't heard directly, but I think there's every opportunity, yes, I'm sure. You'll be aware that I haven't been in post that long— 

—but from what I've seen and from visiting services and different community groups, I think there's a huge amount of initiative and thoughtfulness and insight into what could be done.

So, just to give you an example, last week, I was at the Pontypridd rugby club where they are doing walking rugby, which is geared to older people, older men particularly, to help them either have a break from caring or combat isolation. Now, you wouldn't think, when you're thinking 'respite' that walking rugby is the answer, but what a fantastic way of thinking about, 'What does this person enjoy?', 'What's going to make them feel better?' And we know that the Welsh Rugby Union are thinking about how they can get behind that to roll it out across Wales. Well, that would be a brilliant initiative. So, I do think that it's about maybe spotting these things, giving them some impetus, promoting it, getting those ideas going. So, I'm sure we can do it here.

Thank you, Chair. In the Age Cymru evidence, you express concern about the cost and the quality of respite care, and you highlight that we need, as does the older persons' commissioner, greater flexibility of provision. Could you just tell us for the record a bit more about what those issues of cost and quality are? And has the Welsh Government's additional funding for respite care to local authorities made any improvement in the situation from your perspective?

Okay. So, if I start off with the cost, the cost issue comes up to us most often when people are self-funding, so they're not being provided with support through the local authority, through social services. So, for example, one lady we talked to was a lady in her 80s, caring for her husband who was living with dementia; he was discharged from hospital with no care package in place, and we spoke to her some eight months after this discharge and she was paying for night-time care—it was costing £2,000 a month—so that she could have some respite two or three nights a week, so that she could care for him for the rest of the time. So, she was trying to do as much as possible as she could for him, but it's costs in those sorts of areas that we're thinking—. She didn't have a carers assessment, and we intervened and actually found—we got the individual assessment and then the carers assessment. But when we saw the carers assessment, because the family had been deemed to be coping with the night-time care, whilst it was recognised as a need, there was no provision put in place. So, if you look at an instance like that, that cost is huge and not sustainable because when the lady got in touch with us, her resources, her ability to do that, had diminished hugely. So, that's one area where you'd see cost, and I'm sure that's one person who thought to phone us. There are going to be many, many more out there with that sort of example. Even if it's not the night-time care and that cost, but it's providing care for themselves. We know many people will buy in the care themselves, so it's what they want and that they can rely on it. So, you are going to find lots and lots of instances like that.

In terms of quality, I think it refers to the whole experience. It is that getting the assessment, getting to talk to the right people, then getting some service on the back of it. People feel that they're fighting for this. It's not easy for lots of people, whether it's to get through to the gateway, as I say, to talk to the right person. It's the feel of the whole experience that seems to lack quality for people. And then, as I said earlier, it's about what sort of services then come on the back of it. Are they right for you as an individual? We hear from lots of people where respite is provided, but they have to go with the person that they're caring for, or they have to drive them there. So, it's respite of a form, but it's not giving you the break or the opportunity to have some space for your own life. So, I think that's where we'd say quality and cost.

11:50

And the Welsh Government additional funding. Have you seen that make any difference yet?

Not yet, but I wouldn't like to say that it's not, because, obviously, it's very early days and we wouldn't have any evidence around that at the moment.

Last question at this point from me. In your written evidence, you talked about the possibility of using direct payments more widely for older carers as a route to respite. Could you both, perhaps, say a little bit about how you think that might happen and what could be done to promote the use of direct payments for older carers?

I think there's pretty low take-up at the moment, and no awareness, actually, about direct payments as a route. What it can do when it works well is give people that choice, control and flexibility about putting together their own respite services or needs. We've seen some examples of where that can work well. So, for example, where it's been used by an older carer to have three personal assistants providing support on a rota over weeks, so that they get a clear break from that caring role.

There are also examples of where it's been used a little bit differently, actually, by a person with dementia themselves to access the gym in the local hotel. So, some examples of where it can help, the sort of health and well-being side, and also about giving people a clear break. I think it has a really good and important role for some people. It's not the answer for everyone, and I think maybe sometimes it's being used as a route because people feel maybe they can't get that choice and control and flexibility in any other way. So, I think it's both about looking at how direct payments can support people, but also looking at why aren't people feeling they've got the choice, control and flexibility through other routes. 

I'd agree in terms of—. You've got some potential in terms of providing that flexibility. As Heléna said, they don't work for everybody, but, actually, people need to be given that choice; they need to be made aware that that's an option so that they can determine whether that's right for them or not. Because, for some people, they will be in a position to manage those direct payments, other people simply won't want to. But they need to have some choice and some flexibility too.

Ocê. Rŷm ni'n troi nawr at wasanaethau gwybodaeth, cyngor a chymorth. Lynne Neagle.

Okay. Turning now to information, advice and assistance services. Lynne Neagle.

Thanks, Chair. Age Cymru have said that some information, advice and assistance services are not tailored to the needs of older people who are often just referred to older people's organisations without providing the necessary funding. Can you tell us a bit more about what you feel the shortcomings are, and how we could try and make recommendations to address them? 

I think we were referring to two issues there that are separate, I think, and linked. One is about people's ability to navigate through those single points of access and then, the second was what people get once they get through that single point of access and where they're referred to. I think, in the evidence session earlier, you heard about the conversations that people have when they get through—whether the people who are delivering the single points of access are actually trained to recognise a carer with a carer's needs and to point them in the right direction; whether they have that sort of awareness of dementia and other issues that, when you start to have a conversation, it would be useful for people to have. When people phone social services, very often, they are at a point of crisis and they need something, but they're not quite sure what they want. If you phoned our advice line, for example, you'd have a holistic conversation; we wouldn't start by responding exactly to what you said you wanted. We would take you through a conversation that explores all areas of needs and then agree with you what it was that you wanted at the end. We wouldn't jump straight to the end. We're not sure that those single points of access do that. There are other accessibility issues, too: potentially people with hearing loss and other sensory impairments, making sure that they can get the same level of access. And then, lots of information, as we know, is available online. Well, if we're talking about older carers, we'll know that lots of them aren't able to go online.

For some people, it's important to say that those single points of access work really well. We had some focus groups that we ran earlier this year. Some people told us that they worked through things and it was easy for them: they'd managed to look things up online; they'd put together their questions and they were able to navigate it. But it's not the same across the board; not everybody has the same experiences, and I'm not sure that they're all being delivered in the same way.

11:55

I think potentially training and capacity. The second issue that we referred to in our written evidence was about then, when you get through that, being referred to services that don't exist, or being referred to services that have been decommissioned or that aren't funded anymore, yet the local authority is still referring to them when they're the ones who have withdrawn the funding. I think that's a real issue for the sector, particularly. 

Okay. What about the information services for Welsh language speakers? How adequate are they?

We haven't got a huge amount of detailed information on that. Earlier this week, the Welsh Language Commissioner and the Alzheimer's Society published some information about the availability of care in general for people with dementia, and I think we would suggest, our feeling would be that that's pretty similar in terms of information for carers.

Yes. I'll just pick that up. We know from work we've done with the Welsh Language Commissioner about the challenges in accessing public services. My office produced a report a while back looking at access to GP services and found, for example, that you could access in the Welsh language, but you might need to wait longer. So, I think there are some real challenges there. If you're thinking about when you're in a caring situation, and it can be really difficult and you might be at a point of crisis, it's so important, then, that you're able to access services in the Welsh language if that's what you want to do.

With regard to other languages, particularly prevalent in cities, what is your narrative around that, because obviously, it would have to be equitable?

Yes. I don't think—. I don't know if we've got anything specific in terms of recent evidence on that, but I think anecdotally, I would say that those kinds of challenges definitely still exist in terms of accessing in community languages, for example.

The other point I'd make about access, which links to both of those things, is that, increasingly, the fact that so much is done online can also be a barrier to older people. Less than half of people over 75 use the internet, so that is again a barrier, so you could have both a language barrier and, if you like, a technology barrier for older people.

We heard in the previous evidence session, which I know you heard a lot of, about the weaknesses in the current collection of data on carers, and you've both highlighted that in your evidence as well. So, what specific information do you think we ought to recommend is collected and published?

I was pretty shocked, I think, when I saw the data on assessments, actually, in terms of the numbers of refusals of assessments, lack of data on what an assessment leads to and what an outcome is from that, and also where we can't be clear whether that assessment has led to the right support. So, I think there's something about particularly refusal of assessment, and why that's happening, because that feels to me like a really serious issue. I had an interesting conversation with a group of carers a few weeks ago, and we were talking about carers assessments—and this is only an anecdote—and I thought it was very revealing about language and sometimes how the professional language can be a real barrier. A group of carers said to me, 'Actually, when we heard about carers assessments, we thought that meant someone was coming out to assess how we performed as a carer, to see if we were doing it well or doing it right'. Now, I wouldn't have thought of that as an issue, but I just think it showed how important it is to speak in language that people can understand, and that's just an anecdote, but I thought it was quite a revealing one.

So, I think that data on assessment, given that is the entry point, is really key, but I also think there's some data that is actually on the health side, particularly for older carers. So, I'd be really keen for us, for example, to know how many unplanned admissions to hospital are because of carer breakdown—how many dual admissions to hospital are because the cared-for person is going in, and then the carer has to go in as well, or the carer goes in and therefore the person they're caring for has to go in. So, I think there are some, if you like at the more acute end, real data gaps about what's happening, particularly to older people, particularly in their older age group, where often the interdependency between the person caring and the person receiving care is so close.

12:00

On that particular point, in terms of any longitudinal study, I think that's absolutely critical in terms of progression in that area. So, who should be doing that? Should it be Welsh Government, should it be the third sector, universities?

My view is that Welsh Government should support and instigate a longitudinal study on ageing, of which, obviously, caring would be a significant part, because I think that's the big data gap that we have at the moment. We've got some fantastic universities here doing great work, but it's not all joined up, and if we're serious about making progress, we need to understand our starting point and understand where we're trying to get to. Particularly because of our population—our older population is so diverse, and will get increasingly so—we need to understand the different communities and the different needs within them. It's difficult to do that without the longitudinal study.

I was going to say that's exactly the point I was going to broaden it out to, because I think it's not specifically a carers issue. It's actually about a longitudinal study and the importance of having that.

I think the only other point I would make is about the triangulation of data. There's data in lots of different places, but actually we need to triangulate some of that to make sure that we have got the big picture, so that we can plan strategically for social care and also for support for carers.

Reit, trown ni nawr at ran o'r dystiolaeth yr ydym ni wedi'i chael am y problemau sy'n wynebu pobl sy'n gofalu am bobl sy'n cael cyllid gofal iechyd parhaus gan y gwasanaeth iechyd, ac mae Julie Morgan â chwestiynau yn fan hyn.

Turning now to the evidence that we've received regarding the problems faced by carers who care for those people in receipt of NHS continuing healthcare funding. Julie Morgan has some questions on this.

Yes, thank you very much. I wanted to ask about carers looking after people who are in receipt of continuing healthcare funding. I think the whole field is confused in any case, with continuing healthcare funding and other types of funding. But how do you see that this affects the support for the carer? Are there any clear lines of accountability? Which public body is responsible for looking after the carer?

So, it is a really complex area, and we know it's one that people really struggle with. One of the things that we've found is that, where people move from getting support through the local authority to being assessed and becoming eligible for continuing healthcare, there seems to be a grey area there around who is then accountable and responsible for the carer. So, an example is where maybe a carer has been using direct payments to provide support to the person they're caring for, that person's condition deteriorates, they become eligible for continuing healthcare, but the carer's then left thinking, or not clear about, where their support is coming from and who is accountable. I think it's very clear that the local authority is accountable still for assessing and providing support for that carer, but I think the worry is then whether that carer gets lost in the picture, because it's now under a continuing healthcare approach. I think again it's maybe an indicator about that wider issue about the complexity of that system.

12:05

Well, we've certainly had that example that I've talked about through our casework service, yes. 

Yes, but that is—. There would be frequent examples of this happening, do you think?

I don't know what the evidence says one way or another on that. Given that relatively not that many get continuing healthcare, my sense is that, I would guess, because it's so complex, that any transition is going to be a challenge for people between one system and another. I think we certainly see evidence of that, where you're transitioning from one system to another. 

I think making it really clear that the local authority keeps that responsibility for assessing and supporting the carer in that situation. We obviously give that advice when it's raised with us—whether that's further guidance that's needed, I don't know, but I think it's that real clarity. It is about a fundamental right for carers to access that support and to have that local authority still responsible for them. 

I think it touches that broader point about integration between health and social care as well. So, this is about the carer, but I think it cuts across care for the cared-for as well, so that we're not losing people between the gaps, and there should be responsibilities to link those things up. 

This is a wider point, really, but do you think this system is satisfactory, really, where you have continuing healthcare and, on the other hand, another form of care?

It's not satisfactory at all, and the continuing healthcare system is incredibly complex to get into—the assessment process, the appeal process, what it puts families and individuals through. When people get continuing healthcare, then that's excellent, but then for the people who don't, and yet they've had to try and get through that system, that's really difficult and really hard. So, in looking at the future of social care and the future funding of social care and, as Vicky was saying, the integration between health and care, for me, that's an area to look at. 

And the discrimination in continuing healthcare, because people can have equivalent needs, and one person will get it and one person won't. I think that hits—

People don't feel it's fair, do they?

No, I've had several cases in the constituency where we've had it happen. Thank you.

Okay. Unfairness, but a matter for another day, that one. 

Symudwn ni ymlaen i fater pwysig arall, a dweud y gwir, sef gofalwyr sy'n dioddef cam-drin domestig, yn ogystal â'r sawl, yn amlwg, weithiau sy'n cael eu gofalu amdanyn nhw hefyd yn dioddef cam-drin domestig. Mae Dawn yn arwain ar hwn.

Moving on to another important matter, in truth, which is carers who suffer domestic abuse as well as those cared for who sometimes suffer domestic abuse. Dawn is leading on this. 

Thank you, Chair. You've highlighted that issue in your evidence—both carers that can be subject to domestic abuse, but also the cared-for. And I think, actually, sometimes we probably do know quite a bit about elder abuse, and I'm thinking particularly in dementia cases, but perhaps not so much about carers that are abused. How well do you think the statutory agencies are responding to that, from both sides?

My office has done quite a lot of work on this over the last few years, and I think there is a general lack of awareness actually still about abuse of older people, how prevalent it is and what's happening, and I think that lack of awareness includes a lack of awareness amongst front-line health and care professionals. So, my office does a lot of training in this area, and we find that professionals don't necessarily know about the guidance that's there, and I think we're probably the main organisation that's doing this training in Wales, actually, on safeguarding issues and abuse. 

In terms of abuse within caring situations, it's incredibly complex and difficult, and sensitive. There is some evidence that shows that there's an increased risk for people living with dementia to experience abuse from a carer, but likewise there's also a risk to the carer in terms of experiencing abuse from the person they're caring for. So, I think this is, again, a wider issue for us here in Wales in terms of the levels of abuse and that risk of abuse. So, my view is that we need to do more in terms of raising awareness, particularly amongst those front-line professionals, giving them confidence about what to do and how to act on it, and to just think about what the pressures are within that family situation that is leading someone into that abusive situation. Sometimes, it might have been something that's been in the family for many years that is coming through, but we know that some of the triggers will be those issues about stress, those issues about suffering from ill health and trauma, for example, and it feels to me like it's a real big warning bell about a wider issue around how carers are coping. 

12:10

Yes. And, of course, there are particular behaviours associated with dementia that can lead to that. So, are you suggesting—I think you are suggesting, in a sense—that the social services professionals working with families in that situation—cares and the cared-for—should be a little bit more proactive in terms of what they see, and maybe rather than waiting for the carer to say, 'I've got a problem', there might be something a bit more proactive? In other words, really, what I'm asking is are all the duties under the social services and well-being Act being fully fulfilled around this area. I think what you're saying is that they're probably not at the moment. 

And I think the point about awareness is really important, because for the carer potentially experiencing abuse, the ability to talk about it, the ability to raise it, is going to be really sensitive, so the awareness and somebody proactively probing, albeit gently, on that I think is a really important way of drawing it out. Because, otherwise, it can so easily go hidden, and kept hidden, because of the sensitivities.  

Yes, and particularly if it's a behaviour that's only arisen as a result of that condition. Yes, I take all that.

Can I move on just to ask you about the independent professional advocacy, and why you think so few older people are actually able to access it? 

I think one of the reasons so few people access it is, in terms of the independent professional advocacy, about the narrowness of the definition of where it's available to people. So, I think that's the first thing to say, because it's available to people with care and support needs in certain circumstances. We've just done some research. We've published a report called, 'Advocacy Counts'. It's the sixth one that we've done—we've been doing it over quite a long period now—to look at the availability of advocacy services to older people. We've seen a 32 per cent drop in the number of advocacy services specifically for older people. So, what we're seeing under the social services and well-being Act is that advocacy services have broadened out, so the specialisms are disappearing and, I think, the availability of advocacy has also been disappearing.

One of the things that happened, probably about eight years ago, was that the lottery in Wales put a significant amount of money into providing advocacy and funding advocacy services. That lasted for five years. Those projects have come to an end. At the same time, the duties on providing independent professional advocacy have come into being, and there's a gap somewhere—where services are ending, they haven't yet been commissioned under the Act, and expertise and services are being lost. So, I think one issue is around the supply side, but then the other issue is probably around demand. There is low awareness about advocacy amongst older people.     

So, how could the advocacy services particularly help carers, because, if we're going to raise awareness, what would be saying to an older carer that an advocacy service can help them with?  

So, some of it is about helping them to express voice and what they want out of something. It's about being able to express your needs without responding specifically to a menu of options, for example. It's about having somebody to support you, and not to talk in your best interests but to actually put your perspective into a conversation. 

Yes. So, it's not about somebody talking in your best interests and making decisions for you, but it's about putting your perspective so that you can take those decisions. 

Reit, mae'r ddau gwestiwn olaf o dan ofal Rhianon Passmore. 

The two last questions are from Rhianon Passmore. 

Diolch. How well, in your view, is the social services and well-being Act serving the interests of our carers and, in your view and perspective, how can any gaps be improved? 

I think the Act is one thing. For me, it's not about the Act or the legislation; it's actually about the resources available there not only for carers, but for social care, because I think the availability of resource for social care impacts on what carers need because, in one sense, if all of the care that people need was being provided, there wouldn't be such a demand on our carers; they would have better opportunities to have a life of their own. So, I think those things are intrinsically linked, and I'm not necessarily sure it's about the Act; I think it is about the resource to deliver that.

12:15

So, systemically, around that—obviously, in terms of budget announcements, £30 million with regard to social care, other pots of money available in terms of transformation et cetera on mental health—how would you like to see those envelopes of money, in your perspective, spent so they can better enable the landscape systemically around carers, and the health and well-being of the cared for and those who care for them?

I think it is a systemic issue, and carers are suffering as a result of that, I think. So, I would certainly argue for issues around carers' breaks and respite, because that is fundamental to helping carers to stay well to help the person that they're caring for. From all the research I've known over the years, getting a break from caring often is the thing that comes highest when you ask carers what they need and what they want.

I think there is a big issue here also, though, about the social services and well-being Act and how that relates, then, across to health, because health has such an important part to play in this in terms of the awareness at primary care level in particular, but also at secondary care level. So, we know, for example, that for carers sometimes the most difficult moments are when the person they're caring for goes into hospital and the carer feels that their views are ignored, they're not seen as an expert in care, and when the person is discharged there isn't enough conversation and planning with the carer about coming home.

So, I think the other way we can look at it is: where are the stress points on the carers, that we want the social services and well-being Act implementation to support and help, and where it is that, actually, other public bodies need to take their responsibility seriously for this as well. I think we have a lot more to do in terms of the NHS and its support and responsibilities towards carers. 

So, outside of systemic improvement holistically in this area—you may or may not wish to answer this—with regard to funding for the future, have you got any view on the social care levy?

I think it's unquestionable that we need to have more funding into the social care system, and my view is that that needs to be a mechanism that is not voluntary but is compulsory, because we know that voluntary systems don't work. Now, whether that's through a social care levy or another means I think is open to question; it's too early for me to comment on that. 

Yes, and crucially, we need to pay as much attention to what it funds as to how we raise the money. We can't just go on incrementally trying to fix things. We're in a new place here in terms of our ageing society, which is something to celebrate, but we need to plan for it and we need to make a shift in the support that we're giving to carers, because we are letting them down at the moment. 

In terms of the funding, I think I'd completely agree. The system as it stands is seriously underfunded. We need to see greater investment in the picture as a whole. We're currently doing a piece of work at the moment looking at the way we think that would be best funded, because it could be that there's a basket of measures that we need to put in place. I think Heléna's point about understanding how we would then spend that money is really important, because what we need is more money into the system, not changing and the displacement of the way things are funded. I think what we would like to see is a fairer distribution of who pays, because at the moment you've got people who are paying catastrophic amounts of money, and then some of us who don't need care don't end up paying that. So, I think there does need to be a fairer distribution, but it could be, as I say, through a basket of measures, not simply the one. 

Pawb arall yn hapus? Unrhyw gwestiynau? Na. Pawb yn hapus. Rhyfeddol. Diolch yn fawr iawn i chi. Dyna ddiwedd y sesiwn, felly. Diolch yn fawr iawn i chi'ch dwy am eich presenoldeb y bore yma ac am ateb y cwestiynau mewn modd adeiladol iawn. Rydym ni wedi dysgu llawer, diolch yn fawr. Hefyd, diolch, fel y dywedais i ar y dechrau, am ddarparu'r wybodaeth ysgrifenedig ymlaen llaw. Bendigedig. Diolch yn fawr. Fe allaf gyhoeddi ymhellach y byddwch chi yn derbyn trawsgrifiad o'r trafodaethau yma er mwyn i chi allu gwirio eu bod nhw'n ffeithiol gywir. Gyda hynny, dyna ddod â'r sesiwn yna i ben—diwedd eitem 5. Diolch yn fawr iawn i chi.

Fe allaf gyhoeddi i fy nghyd-Aelodau y bydd toriad rŵan tan 1 o'r gloch. Dyna ddiwedd sesiwn y bore. Bydd sesiwn y prynhawn yn dechrau am 1 o'r gloch.

Everyone else content? Any further questions? No. Everyone is content. Miraculous. Thank you. That's the end of the session. Thank you very much to both of you for your attendance this morning and for answering the questions in a very constructive manner. We have learned a great deal, thank you very much. Also, thank you, as I said at the start, for providing the written information beforehand. That was splendid. Thank you very much. I'd like to announce that you will receive a transcript of these discussions so that you can check its factual accuracy. With that, we'll draw this session to a close—the end of item 5. Thank you very much.

I'd like to announce to my fellow Members that there will now be a break until 1 o'clock. That's the end of the morning session. The afternoon session will start at 1 o'clock.

Gohiriwyd y cyfarfod rhwng 12:19 ac 13:03.

The meeting adjourned between 12:19 and 13:03.

13:00
6. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Hafal
6. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Hafal

Reit, buasai'n well i fi alw'r cyfarfod i drefn, gan ein bod ni wedi mynd yn gyhoeddus. Felly, croeso nôl i sesiwn ddiweddaraf, ar ddechrau'r prynhawn, y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon. Rydym wedi cyrraedd eitem 6 rŵan, ac yn parhau i graffu ar effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â gofalwyr. Hynny yw, mae'r pwyllgor yma wedi bod allan dros gyfnod o fisoedd mewn gwahanol gyfarfodydd yn cyfarfod efo pobl i benderfynu a ydy'r Ddeddf yma yn gwneud gwahaniaeth i ofalwyr neu beidio. Rydw i'n falch i groesawu aelodau Hafal yma, ac rydym yn cydnabod ac yn ddiolchgar iawn i Hafal hefyd am ymgymryd â'r un un math o waith, a gofyn i'w grwpiau nhw mewn grwpiau ffocws beth maen nhw'n feddwl o weithrediad Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014. Felly, diolch yn fawr iawn i chi ymlaen llaw. Diolch yn fawr iawn hefyd am y dystiolaeth ysgrifenedig rydych chi wedi ei chyfrannu i ni.

Nawr, rydw i'n falch iawn, felly, i groesawu i'r bwrdd Kay John-Williams, defnyddiwr gwasanaeth a swyddog cyfranogiad gofalwyr Hafal; hefyd David Southway, cynrychiolydd gofalwyr Hafal; a Ceri Matthews, cynrychiolydd gofalwyr Hafal. Wedi dweud hynny am yr holl dystiolaeth yna—a diolch i chi am eich gwaith ymlaen llaw—yn nhermau amser, awn ni'n syth i mewn i gwestiynau. Mae'r cwestiynau cyntaf o dan ofal Dawn Bowden. 

Right, I'd better start calling this meeting to order, since we are now in public. So, welcome back to the latest session, at the beginning of the afternoon, of the Health, Social Care and Sport Committee. We have now reached item 6, and the continuation of the scrutiny of the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers. This committee has been out over a period of months in different meetings meeting with people to determine whether this Act is making a difference to carers or not. I am pleased to welcome members of Hafal here, and we acknowledge and are very appreciative of Hafal too for undertaking the same kind of work, and asking their groups in focus groups what they think about the implementation of the Social Services and Well-being (Wales) Act 2014. So, thank you very much to you beforehand. Also, thank you very much for the written evidence that you have submitted to us.

Now, I am very pleased, therefore, to welcome to the table Kay John-Williams, service user and carer participation officer from Hafal; also David Southway, carer representative from Hafal; and Ceri Matthews, carer representative from Hafal. Having said that about all of that evidence—and thank you for your previous work—in terms of time, we'll go straight into questions. The first questions are from Dawn Bowden.

13:05

Thank you, Chair. Good afternoon, everyone, and thanks for coming in. Can I just ask you about your written evidence, because within that you talked about—for lots of carers, their priority is obviously ensuring that the person that they're caring for receives the right care and support rather than thinking about their own needs, perhaps? What do you think are the challenges currently facing carers of people with mental health problems in particular and do you think they're getting worse? 

Personally, as carers, we feel isolated, we actually feel stigmatised, we are very much judged, we are angry, we are hurt, because we are parents, we are worried and we're obviously very helpless in a crisis. Services are often discourteous to us—we are seen as a pain in the backside. We are ignored, we are bullied, we are intimidated and frustrated and we often lose out on our own employment status.

Confidentiality is still a major, major issue between services and carers. In my personal experience, it's still very much a one-way system, whereas services will want to talk to you about the present situation and we say to them, 'Well, in confidence, I don't want our loved one to be made aware of this certain thing but you as a service need to be made aware of it.' And the reason for that statement is simply that our son, in particular, becomes very judgmental in his psychosis and relationships within the family break down. So, if they are aware that we have disclosed something it fragments that relationship. And time after time after time when we go to visit, the statement is, 'Oh, so you've told the social worker, then, about that, and you've told my nurse about this.' So, it's still very much them and us—'I'll have all the information off you as a professional but I'm not going to guarantee you the confidence in talking to me.'

So, you're talking specifically about social services now, are you, or the health service, or both?

Yes, in our experience, in both. And certainly—I mean, my wife and I have been carers for the past 18 years for someone who has severe mental ill health. And I know this isn't about your cared for, it's about us as carers, but he's been on a section 3 for 18 years and the last five years he's been—

Okay. So, you've never been a carer for him as a child, then. He's always been an adult since you've been caring for him.

Because we might want to explore in a moment whether there's a difference between the care for adults and children. 

You know, we personally feel that severe mental ill health is a forgotten disorder and it's treated accordingly. There's insufficient funding and very little needs-led accommodation for people who come out of hospital. 

And do you get—sorry, do either of you want to say anything before—?

I can add something when you've finished talking to Dave. 

Okay. And do any of you feel that there is a difference in approach to you as carers of people with mental health conditions as opposed to carers of people with physical conditions? 

If I could say something—within my professional role, I visit groups of parents who have set up their own support groups within the Bridgend locality. And people around the table, parents, will speak about autism, they will speak about physical disabilities, but they won't speak about mental health. And they ask me whether I will go outside with them and that's even, you know, with younger people coming through with transition—very often, they become like new parents of a child with a disability, when mental health overtakes the autism. So, they know everything about autism—parents whose children have Asperger's—but then, the mental health will come more prevalent than anything, and they're like new parents all over again.

What I'm finding is that people don't automatically get referred to the adult services. The service stops from children to adults, and then they have to wait for a crisis to happen to be picked back up. So, I'm setting up another group now for those people, because there are so many areas within this that people need a voice within. 

13:10

No, that's what we are finding.

I was just going to say I think it's actually impossible to separate a carer's experience in terms of health and social care. So, I'm fairly new as a carer to mental health services. My daughter's 22 and she was diagnosed with a borderline personality disorder around about 12 months ago. And to answer your question as to whether I think there's a difference in terms of mental health and physical health—absolutely, because we were given that diagnosis, or my daughter was given that diagnosis after 15 minutes with a staff-grade psychiatrist. And when I asked what comes next, she said, 'What do you mean, "What comes next?"' And I had to give an example of physical health. If I've been diagnosed with cholecystitis, then I'll have a treatment plan. And, actually, she looked quite shocked when I said that. So I really do think that there is a difference between physical and mental health.

And in terms of looking, particularly, at the social services and well-being Act—has it been implemented fully? I don't think it has, because I've never been offered a carer's assessment, which is, actually, a right—that every carer should be given that opportunity to have a carer's assessment. So, actually, nobody really knows whether or not I'm coping. Nobody knows whether I'm financially stable, whether I'm emotionally stable, because nobody's ever asked me that question.

And is that part of—? Again, in your evidence—. I say your evidence, but in the evidence that Hafal has presented to us, there's a section in there where you talk about the agencies being sometimes dismissive of you. Is that all of your experiences, or is it depending on individuals? Is that an individual thing?

I was a professional but, also, I adopted a little girl when she was three. She came to us with quite severe mental health ill health, severe trauma, and I had to give up my career. Nobody ever offered me a carer's assessment. Now that she's more settled, I've come back into this—

It was 2003 that she came to us. But when I—.

No, and I didn't know about the carer's assessment, and it's the way that it's offered, because it's not that you're not coping—it's your right. It's the way that it's sold to people. It's the most terrible feeling when you can't make somebody you love so much better. So, if it's offered, so that you can keep on your caring role, it's—

So, it's not something—. So, what you're saying is it wasn't something that was automatically offered to you, or that once you had a diagnosis for the person you were caring for, somebody said to you, 'Well, actually, now we need to think about you and your needs.' Really, you've had to go looking for that yourself. Is that what—?

I think my experience is—. My apologies for my pen. [Laughter.] I think when you're first supporting somebody coming into mental health services, your primary concern is that they're getting the right support, and if you feel that the support that they're not getting is not appropriate, then you actually don't think about yourself at all, because all you're focused on is trying to find that right support for them, not for you.

And did all of you understand and acknowledge, early on, that you were carers, or were you just thinking about yourselves as parents?

You don't want to be a carer. When I do lots of work on acute wards now and we sit outside with Hafal, because we are specialized and we have all the literature and we want to get people involved from early on, we can't use the word 'carer' because you don't want to be a carer—you just want to be a mum or a sister or a wife. That word in itself—it takes time for you to embrace that as a person. 

So, if I could just go back to what David was saying at the outset. There were some words that you used that I thought were quite startling, really. You talked about being bullied and intimidated—by whom?

13:15

In hospitals and in the community. It got to the point, at one stage, where we had prearranged to collect our loved one for a shopping trip out—on arrival at the ward, a senior sister just blocked our way. They would phone up and ask to speak to myself. If I was unavailable, my wife would say, 'Well, I'll pass the message on to Dave.' 'I can't speak to you under data protection. I'm just letting you know that your son is being discharged. We can't tell you where to. We can't tell you anything under data protection.' You're left high and dry.

So, there are some legal, technical issues there, but there are better ways of, perhaps, handling them, shall we say?

It got to the point where my wife would refuse to enter the ward unless I was with her. The only time that changed was when the cat was out of the bag and they found out that I was quite a senior person and I was a nurse. Then the person couldn't do enough cartwheels for me.

So, can I ask if you've all had similar sorts of experiences in how you've been treated as carers? I don't want to put words into your mouths, but is your assessment of that that there is an issue around lack of staff awareness, training or resources, or is it all of those things?

As part of my role now, because I'm a carer as well, I've been trying to do so much partnership work. It is starting to work. There is that—. Obviously, that would be another question, but I'll probably just say it now: that the partnership working at the top in health—. Ceri is our local partnership board rep now, so she sits on the health partnership board. Dave is now our patient experience group rep. So, in Bridgend, we are really trying to get the people's voice.

I must say that the three of us are professionals as well, but we want to help people who can't put that professional hat on, because it's really scary speaking up—it's so scary. So, we've put reps in to represent all of those groups. That's why specialised services—. Somebody went to a carers' group, and somebody said, 'Well, what does a schizophrenic look like?' They didn't know.

Part of your question was, 'What are the challenges?' For us, as a family, as an example, my wife and I are both professional individuals in health and in social services. The stress, the pressure and the non-engagement resulted in both of us becoming so ill our jobs went.

It has an impact. You're not really in the best position to continue caring if you're ill as well—I understand that.

No, you couldn't carry out your work.

Are you—? Sorry, Dave, for cutting across you there. Are you aware of any instances of very good practice, in terms of interface with social services and the health service for carers? Perhaps if you are, you can tell us a bit about that.

In Bridgend, because of the partnership work that we've done within our carers' groups, we now bring in the professionals—the leads—who come to sit with the carers. They talk at grass roots with them. I've brought some examples of some work we've done with clinical psychology students on—. Carers are stuck, as you can hear with us now, on their stories. They haven't had anywhere to put them—they need to voice their story to go back that level to look at what has to change. That's the work that we are doing.

The people now—the lead nurse and the lead of psychiatric intensive care units—they come. The head of the crisis team—we've just been in a meeting with them, and with the principal officer now in social services. We made that headway with health, but, within social services, that was coming after.

Yes, but I have got other messages now from people in other areas—assessments. The lady who was supposed to come today but she couldn't come because her daughter is unwell said that she put in two formal complaints to have a carer's assessment in Pembrokeshire. She had to actually put in two formal complaints.

13:20

I think we're going to come on to that with some further questions, but that's fine.

Just in terms of an additional area of good practice, I think there is a quality improvement programme that has been developed by leaders within the Princess of Wales Hospital, and, as service users and as carers' representatives, we've been invited to take part. So, there is truly co-production going on. There is good practice, and I think some of that is—. I think there was a piece of work going on anyway, but I think, as a result of us being prepared to raise our concerns and share our experiences, they have taken that forward with us.

Turning specifically to carers needs assessments, then, Helen Mary has got some questions.

Thank you, and thank you all for being here and for your evidence. It's very important that we hear from people with personal direct experience. Are you aware of, or is Hafal aware of as an organisation, any information about how many carers of people with mental health problems actually have had carers assessments under the social services and well-being Act, or have you got a feel of: is it different for people who are caring for people with mental health issues than it is for people with physical challenges—just a feel of the scale of the issue for us?

It's very different in every county, and that was quite a shock, to know that it was very different, and people had the same stories in each county. Cardiff is different again. They have carers assessments far quicker, and are offered the carers assessment. Bridgend—. You wanted a carers assessment 17 years ago, Dave, didn't you?

Eighteen years ago, and then I was speaking out in a meeting, and my wife and I, about six or seven years ago, were offered another one, and it went something like, 'I'll pop the assessment form through your door; when you've completed it, return it back to me.' Hence to say, I didn't waste the ink.

Absolutely, and if you're looking at someone who's not in services, and doesn't know their way around—. You know, I always gauge my support and reaction by someone who's quite elderly, living on their own, trying to support someone, haven't got any contacts with anyone whatsoever—how are they going to cope? They wouldn't know what's out there to request via your assessment. It was quite abysmal. I think it should be a meaningful carer's assessment, in order to promote the positivity and the well-being of the whole family, because for someone with severe mental ill health, it's a family illness. It's not an isolated broken arm or a broken leg; it involves the whole family. They should be revisited and monitored on a frequent basis, and they should be honest, because they don't disclose certain things to you. So, they wouldn't tell you, as an example, 'Oh, are you aware that you can have respite?' I'm yet to be told that or to identify if there are any respite environments available to carers. It's just a tick-box exercise from, particularly, social services. How can you complete your own assessment? You're in trauma, you're in shock; you're not going to open up your heart. To talk about a situation is a lot easier, in my opinion, than trying to write it down, because once you've written it, it's in front of you and it's permanent and—. So, they expect you to open up your heart on paper, and then put it back through the letterbox. I mean—

I mean, you're a nurse yourself, but lots of people—. Some people might not even have the literacy skills to be able to do that.

Just to clarify, so in regard to—. You're still an active carer, so have you now, under the social services and well-being Act 2014, been assessed in terms of your needs as a carer?

About seven years ago. That was the latest.

This is what we are seeing across Wales—

Yes, well, that's the point of this session. It's to, obviously—. Helen, back to you.

In your written evidence, you referred to an arrangement in Conwy, where Hafal administers the carers assessments, which, you tell us, provides carers with a good experience and actually costs less than social services doing it in-house. Can you tell us a bit about the advantages of that approach from a carer's perspective? Why does it cost less than in-house provision? And can I just ask—? Is that a service that's provided just for people who are caring for people with mental health problems, or is it—? Because I know that Hafal has a broader remit as well now.

13:25

I think, because somebody who knows is actually doing the assessment and is independent, it would be—. There's no real guidance on—. For instance, somebody will be—. Their son would have a learning disability, but then they would have mental health issues as well. They would then go to the learning disability team to have—their son's team, nothing to do with them, who would be looking at their son's disabilities, not theirs, whereas, in Conwy, it's actually specialised people who are looking at it. I really think, as one of the recommendations, we ought to be looking at training for carers before they have a carers assessment, or alongside it, so they know, they have a feel about the form, whereas—. It was explained far more to them there in Conwy than it would be from a social worker. I don't know, everybody—. It's how you sell it to people whether they take it on board. It's, 'They're right, but it's a good thing', but there's nothing worse than opening somebody up, in my experience, when I've supported somebody to go to one where their son's social worker, who opened her up—. She told them what she needed, and then it was filed and nothing ever happened, and the fear that she had, the fear has happened. What she asked for has happened, but there was no money to back that.

So, obviously, there's no point having an assessment if there's no possibility of having the assessed need met.

No, and we don't want that to be what is getting out to new carers. We don't want that. So, we're having to rebuild what's already—. It's the truth: that is what's happening.

What we actually said in the meeting earlier today was there appears to be two opposite poles for the assessment. If you've got someone who you're caring for with a physical disability and the assessment indicates you need a grab rail or a ramp, the OTs can come in and correct that, and, so, your loved one's and your own lifestyle has improved dramatically. But when you complete an assessment for someone with a severe mental, life-lasting ill health situation, you can't see it, it's not an environmental change to the lifestyle, so how do you go about completing an assessment form for that? It's totally different, you know.

And it's hard for carers to think about themselves, obviously. We go back to that all the time. Work has to be done with them about looking at themselves. And they're very, very invisible. We may meet somebody who's been caring for many, many years and it's only then that they've been introduced to our service.

A final question from me in this section: in your evidence, you suggest that more advice and help could be given to carers to enable them to obtain direct payments to support their own needs and support the person that they're caring for. Can you tell us a bit more about your views about the potential direct payments have to help carers and those that they're caring for?

I was recently told in a meeting that nobody's picking up on direct payments for mental health, but then the woman said, 'Well, even if they did'—head of finance—'there isn't money there anyway.' But what can people have? What can they have? How, when you're caring to such a level that the majority of your life has had to stop to do your caring role—how could you then take on the role with direct payments of managing workers? And making sure that what the person has is very pertinent to them—but, being a carer and being so invisible, they don't know what they want. They don't know themselves what they need to keep going as a carer. And that needs work—that, in itself, needs—. With direct payments, with people with learning disabilities, that now is picking up—it's word-of-mouth, isn't it? It's 'Let's have a look at exactly what is going on: what can people be offered?' And it was within carers' groups and somebody saying, 'Well, I'm having this now, and this really helps.'

13:30

So, one of the barriers to people accessing direct payments is just that they don't know that it would be available.

And they don't know what to have.

Another one would be the difficulties if you're not in an area that's got a system to help you do the kind of employer stuff. Are there any other particular barriers for carers of people with mental health problems?

It's, 'How can they leave the person?' if they're caring 24/7, obviously. I know we have the Seibiant worker, where somebody goes in for two hours and either sits with the person in Hafal or they take them out for two hours. They build a relationship up with them. Carers in the beginning are so scared of a backlash to an outsider coming in. We have to build up that relationship. And they don't want to go far. Recently—I'm trying to think what I went to—. Swansea University were looking at respite and social—I can't think of the word now; sorry, a moment—where people actually rent hotels or go on these holidays. I can't remember; it's awful I can't remember. I'll think about it now and I'll tell you. But it was a conference about that. And it was—. It was—

It's something that was just—. People got really nervous about that, but it needed explaining. It needed: 'Let's talk about your fears, then. Let's talk about why this doesn't work', because it's not just a statement, 'Oh, I don't want that.' There are so many fears around letting somebody go when you've had to hold them and care for them so much.

Other barriers would also include that, as a carer, you're taking on additional responsibilities, so you have to have an audit trail for the moneys coming in. You have to keep bang-on records, you may have to interview staff, depending on the situation, and that may mean a CRB check. Also, you've got financial responsibilities in training staff because, if you are paying staff, there's a health and safety aspect of regulatory support. So, it becomes a minefield. And, to be honest, my own personal thoughts on this are that social services would normally be providing all this in-house; they may be providing the money, but they're not providing any of the legal requirements that go with it, and they want us carers to take that responsibility on board. And I, for one, certainly I am far busier now as a carer than I ever was when I was working, you know.

Thank you. You've already addressed some of the points that I wanted to ask you, but could you specifically then—if you had three points that you wanted to underscore as to what the specific barriers are to carers who are looking after loved ones with mental health needs, what would they be? In terms of the training that you've discussed, whoever would provide that—there is a model out there in terms of governor training as well, which is quite an interesting one to have a think about. So, what three points would you highlight? We've talked a little bit about respite. And I'll come onto that in a minute.

For me personally, in my ongoing—and I will be forever a carer until I'm no longer around, such is the situation with our loved one—. What I would like is honesty from people, because people are not honest with you when you ask them questions on behalf of your loved one or for yourself. It's about looking at an equality and a value base, that you are seen as an equal to people when you're in, with respect, these types of meetings, that you listen to what we say and it's not lip service and there's a lot of equal respect given back and forth, because we are all equal, immaterial of the position that you hold.

So, do you feel—? I mean, this has been quite a strong theme, and it's extremely, in a sense, distressing listening to you. For us, it's very interesting to have this opportunity to speak with you all on this matter. But, in that regard, do you actually feel that there is a stigma attached to being a carer fighting for your loved ones?

13:35

I can't talk generally, but, personally, we were always seen as a nuisance, because we challenged respectfully, we asked questions that were pertinent, and it got to the point where our loved one said, 'Dad, don't ask any more because it'll only make it worse for me.' And then you have to leave that ward.

Okay. So, how do we, as policy makers in this place, then, look to change that immediate experience that you have had? And what would be your advice to us in that regard? Because all professional bodies across health would say that that should not be the case; all social work bodies should say that should not be the case. So, how can we use your information?

I see it as a fact that there should be training for both parties, and I think, as carers, we've got a huge value base that we can pass on to services about severe mental ill health. I think that we could be looking at—I don't want to bring the word up, but I will—additional funding for third sector, particularly Hafal, and I'm not saying that because Kay is here, but, as far as we as a group of carers are aware, Hafal is the only known support mechanism in severe mental ill health that supports carers. I am totally unaware, after 18 plus years, of another body that can offer the direct support that Hafal provides. I think that's integral because one in three of us, allegedly, will be experiencing some sort of ill health.

Now, my understanding is that a lot of funding is cascaded out into the communities, to social services or other factors, and some of that money, then, is redirected into the generic carers, which is important. But I think that some of that money should be transferred to a different pathway because we are the forgotten area, to be honest with you, and we cost the most money. With the revolving door, it costs us more to keep our loved ones in hospital. So, if the services and the whole needs-led accommodation were in place, in the long run, it would save money.

So, let me come on to that. Okay. So, let me come on to that. So, we've talked about training, we've talked about potentially better use of the third sector, and, obviously, agencies that are geared into those types of working. In regard—. Kay, could you answer, in terms of the specific needs of carers of mental health, what three things would move things forward for you? Because there have been recent announcements around the £30 million for social care, there are big announcements around money coming into the 'sector'. What would you see, at the sharp end, as being of most use in terms of being able to make things to give better outcomes for those with mental health and for carers of those with extreme mental health issues?

It is about specialised services; it is about giving people a voice. I think it's about advocacy, because so many people don't have advocates. It is about training. It is—. I don't know—. This Act is—it's there all on paper—

—but what can you do about making sure that it is happening? Because it's so ad hoc from county to county. And people think they are doing it. It's not that anybody's doing it on purpose; I know everything can come with a price tag, if you have to fight for the person you're caring for, their needs, but—

It's monitored. Yes. We brought it up today, because we're lucky enough, we've got a mental health forum in Bridgend, we've got—the leads from social services came today. They are doing carers training now, and we are going to be part of that. They've put it together, and I just said, 'We need people, we need carers, you need to look at this again. Let's go back and have the expertise of carers within this group to look at that training.' And I asked how many people—or, you asked, didn't you, Ceri, about how many people? Do you want to say a bit about how many people had a carers assessment and at what stage? Because a carers assessment should be done, I believe, at the stage of the care and treatment planning, alongside it, it's not—

13:40

Before we go into assessment, I just want to ask one final point and then you can pick up, through the Chair, that particular point. In regard to the availability or otherwise—you've already touched upon this—of respite care for those who are caring for those with mental health difficulties, what is your view and perspective in terms of (a) availability and (b) awareness of that? Ceri, do you want to speak?

Yes. I think I'm fairly new—as I've said already—I'm fairly new into services, and really, over the last 12 months, my concern has been about getting the right support for my daughter. So, if I go back—

I'm really focused on health rather than social care, although, obviously, I've tried to read and make sure I know as much as I can know. But I suppose, in terms of answering the question that you asked previously about three things that would make a difference to carers, I'm not sure if this is appropriate in terms of a response, but what came to my mind immediately was access to appropriate services in a timely manner. The waiting times for psychological therapies are way too long. I'm concerned about some changes that are happening within the community mental health teams. They're moving resources from CMHT into primary care and they're going to be offering group psychotherapy, which is not actually appropriate or relevant for somebody who is new into mental health services. So, that's the first thing: access. I know there's now an access target as well. How real is that? What are we reporting and is it hiding anything? Because we know that the waiting times are huge, so I think there's a concern around there. So, that's the first thing I would say.

The second thing, as a new carer coming into services, it's about real-time support and information, because when you come into services for the first time, actually, even as a professional, you're in an unfamiliar environment, you're scared and you don't know what's going on. My daughter, for 21 years, there was never an issue and suddenly, we're on ward 14 in the Prince of Wales Hospital and you don't understand, and there's no real-time support, there's nobody sitting down with you and saying, 'This is how— 

Who should do that? Because many would argue that that interface is there in terms of local government, social services, the health professionals. Who should do that?

That takes me on to the third thing and that's about tackling culture and blind spots with professionals who work in services. So, I work in physical health and I've got a critical care background and— 

—the relatives are incredibly important when a patient comes into intensive care, because that is the worst kind of environment that you could find a loved one in, so we take as much care of the relative as we do of the patient. I think that should be replicated across mental health. Who should do it? Is it the ward staff? I mean, I was signposted to Hafal after four months, and I'm an educated professional. I could have Googled it and looked it up, but I didn't, because I was in a very difficult place. There's no real-time support or information.

We still have to go out and find the carers. I found four in Tenovus in our little village.

Can I just ask in terms of respite? Kay, I don't know if you have any comment on that. I've heard David's comments on respite, but it's—

I wasn't offered any respite until we got to a huge crisis with my daughter, and it broke down not long after because we were all really unwell. That was in 2014. Now, respite isn't talked about that I know of. We go out and we publicise our Seibiant support worker. I don't know why there isn't a huge waiting list, why social workers and community psychiatric nurses aren't referring, because that is a service that we give and it can keep that relationship going even with two hours a week.

Finally, then, because I'll get told off by the Chair, in that regard, do you think that there is enough information gathered in terms of research around the impact of not having effective respite care for carers? Because you know this anecdotally, but do you think there is anything out there that can point, evidentially, to what you know anecdotally?

I can say about the Seibiant worker. It's kept a mum, an 88-year-old mum, who's looked after her son for—I think he's 50-something. And she's been having a Seibiant worker two hours a week, and now she's looking at an end-of-life plan for what would happen with him. She's totally isolated and he's still at home. He would have cost services thousands upon thousands if she hadn't had that even two hours a week. And we picked her up not from social services.

13:45

So, you would say there's a need for that type of longitudinal study and research.

Let's ask people what they want. Because very often they'd have to be in the right environment to be asked what they want. Bring it up within the groups. Let's not answer the questions that people are asking us; let's gather evidence of what people want.

Right. Dawn next on information, advice and assistance, which is under the Act, and you'll need to be agile as well.

Yes, because I think a lot of this has been covered, actually, in the answers to Rhianon. But this is just the difference between the service that an organisation like Hafal provides—. This is about information and advice that's available to you, and I think, Ceri, from what you were saying, it's just not there. And I think you were making the case, really, for parity of esteem, weren't you, between physical and mental health?

So as a mental health carer, there was nothing when your loved ones were identified with mental health issues that you could be pointed or signposted to, where you needed to go for support. Is that a fair assessment?

That's a fair assessment, and I could give you an example of discharge planning. So, you wouldn't discharge somebody from an acute medical ward without a safe discharge plan in place. Service users are being discharged from mental health environments without a safe discharge in place. So, there is a complete lack of parity, yes.

Okay. And in terms of what information and advice services are out there, they are—well, actually, I think you've just covered it. What you're saying is it's there for generic conditions, physical conditions; it's not really there for mental health conditions.

Sorry. The work that we are doing is about doing new leaflets, doing new literature, actually with the carers themselves. So, they are part of it.

That's good. I was just trying to find out what was there in the system now and whether the system—and I think you answered that very early on—is identifying you as carers or whether you're having to self-identify, and I think it's you self-identifying at this stage, and that you're not being signposted to areas where you could get support.

Well, we are trying to advocate at the moment so that each locality would have an easy-to-read contact list of people, because, again, if you're coming back to the older person, the crisis occurs, who do they phone? Who do they contact? So, we're looking at putting contacts like the liaison team, Princess of Wales Hospital, community psychiatric nurses, so that the person can actually have a telephone number and a name for first-time contact.

Sorry, Chair. Could I just very quickly say something then? Because I think you picked up a point earlier, David, about: if you're having a carers assessment with somebody with a physical condition, then it's easy to identify what they need. Is the problem that they don't know what to offer for carers of people with mental health conditions? Do you know what you need?

I think pieces of work have to be done—

—because people are so invisible they don't think about themselves. I worked for a while in domestic abuse, and the one group now that I work with, not with Dave and Ceri, I was naturally looking at working with that group of carers around looking at themselves. They're completely invisible.

I think, Kay, what I'm trying to ask is: as carers, are you looking for somebody to advise you what they think you need, or do you know what you need and you're not getting it? That's really—

Sometimes you can't recognise your inner self and what's required, because your thought process is always engaged on other factors. So I think it's helpful, if again I use the word 'honesty', if the assessor that's supporting you through that assessment is honest with what's available and what can be provided, then maybe there's a halfway mark of what you can maybe look for.

Reit, y cwestiynau olaf o dan ofal Helen Mary Jones.

The final questions now from Helen Mary Jones.

Is there anything you'd want to add in terms of what you'd like us to recommend to get the social services and well-being Act working for carers of people with mental health problems? You've raised a few things as we've been going through, but I just want to give you the opportunity to—. Are there—. Because what we want to do is to be as specific as we can in what we recommend to Welsh Government, because then we can hold them to account about whether they do it or not. Are there other things that you haven't yet mentioned that you think need to be done?

13:50

Communication is the key to all aspects of life, positive or otherwise. And the thing that's desperately missing in a crisis situation is key communication. For example, when someone becomes sectioned at their own home, you can get as many as 10 different professionals in your house at that time, all signing up and agreeing or not agreeing to whether a section is to take place. They then leave your house, and you are left then with your loved one still psychotic in that situation. Then, the police generally come, and that fuels the fire, and your loved one is taken on a section 3 or a section 2 to a place of safety.

You as carers are then left isolated; you have no contact with the outside world whatsoever. And what we are trying to bring up and advocate from now is that perhaps when that happens, a named nurse can liaise with the family just to say, 'Just to let you know, your loved one's safe, they're with the doctor, they've had a shower, they've eaten, they've had some meds. I would suggest you leave it a day or so before you come in for the psychosis to perhaps calm a little. How are you?' And when you visit for the first time following a crisis, perhaps this named nurse, if they were on duty, or a deputy named nurse, could meet you; 'How are you keeping, Dave; do you want to come in here for two minutes, have a cup of tea?' I don't drink tea by the way, but whisky, yes. [Laughter.] And try to offer a bit of empathy and a bit of support, because then you feel valued, and then you are more likely to feel a little bit relaxed, because it's a horrific experience. We've probably gone through it maybe 10 times, sectioning. So, a named nurse to liaise with the family to give you a little update on what's going on, because it never happens.

Something else that you mentioned earlier, Kay, was not waiting until people are in a crisis situation before the carers assessment gets offered. That would be, again, something—

So much money is aimed at prevention. It's huge, that arrow of prevention, in the mental health and well-being Act, but prevention isn't just about signposting; prevention is hubs being set up. Yes, we do need to-hand information. GPs don't give that; they don't want to signpost. But I think the legislation you're talking about is good. It differs in all the counties, so each are interpreting and implementing it differently. So, this leads to a disparity in service quality between counties. And even with our own county now—we've talked about this this morning—they think they're doing it, it's not on purpose, but they're not checking that they're doing it. So, it is about groups, it is about carers having that voice, and how—like we're doing it now in Bridgend—we're hoping now to change the way everything works, and it is; we're starting to make that bit of difference. 

Grêt. Diolch yn fawr. Rydym ni wedi rhedeg mas o amser. Diolch yn fawr iawn i'r tri ohonoch chi am eich presenoldeb, am y dystiolaeth, ac am y dystiolaeth ysgrifenedig ymlaen llaw. Mi fyddwch chi yn derbyn trawsgrifiad o'r trafodaethau yma er mwyn i chi allu gwirio eu bod nhw'n iawn. Ond dyna ddiwedd y sesiwn yma, felly diolch yn fawr iawn. A gaf i gyhoeddi y cawn ni egwyl am ddau funud i gael y tystion nesaf i mewn? Diolch yn fawr.  

Great. Thank you very much. We have run out of time. Thank you very much to the three of you for your attendance, for the evidence and for the written evidence that you sent us beforehand. You will receive a copy of the transcript of the discussions to make sure that you're happy that they're accurate. That's the end of this session, so thank you very much. We'll have a two minute break to bring in the next witnesses. Thank you very much. 

Gohiriwyd y cyfarfod rhwng 13:54 a 14:00.

The meeting adjourned between 13:54 and 14:00.

14:00
7. Effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â Gofalwyr: Sesiwn dystiolaeth gyda Mencap Cymru
7. Impact of the Social Services and Well-being (Wales) Act 2014 in relation to Carers: Evidence session with Mencap Cymru

Diolch yn fawr. Croeso nôl i sesiwn olaf y dydd o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 7 ar yr agenda rŵan, a pharhad efo'n hymchwiliad ar effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â gofalwyr. Rydym wedi cael sawl sesiwn dystiolaeth eisoes heddiw ar yr un un thema, ac mae'r ymchwiliad yma wedi bod yn mynd ymlaen ers rhai misoedd. Rydym ni wedi bod dros y wlad i gyd, neu mae aelodau o'r staff wedi bod dros y wlad i gyd, a rhai grwpiau ffocws hefyd, ar sut mae'r Ddeddf yma'n gweithio ac a ydyw wedi trawsnewid y tir i ofalwyr ai peidio.

Y diweddaraf felly nawr yn y rhes o dystion rydym ni wedi'u cael ydy Mencap. Felly, croeso i chi i gyd, ac yn benodol i Dr Leanne McCarthy-Cotter, rheolwr dylanwadu Mencap Cymru; Wayne Crocker, cyfarwyddwr Mencap Cymru; Dot Gallagher, rhiant-ofalwr a chadeirydd Mencap Môn; a Jane Young, rhiant-ofalwr ac aelod o Mencap Môn. Croeso i'r pedwar ohonoch chi. Yn ôl ein harfer, achos mae amser wastad yn brin ac rydym ni, fel rwy'n dweud, wedi derbyn eich tystiolaeth, fe awn ni'n syth i mewn i gwestiynau. Mae Rhianon yn mynd i ddechrau. Rhianon. 

Thank you very much. Welcome back to the final session of the day of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We have reached item 7 on the agenda now, which is the continuation of our inquiry on the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers. We've had a number of evidence sessions already today on the same theme, and this inquiry has been ongoing for a few months. We've been the length and breadth of the country, or members of the staff have been, and focus groups as well, looking at how this Act is working and whether it has changed the landscape for carers or not.

The latest are the witnesses from Mencap. So, welcome to you all, and specifically to Dr Leanne McCarthy-Cotter, influencing manager at Mencap Cymru; Wayne Crocker, director of Mencap Cymru; Dot Gallagher, parent-carer and chair of Mencap Môn; and Jane Young, parent-carer and member of Mencap Môn. Welcome to the four of you. As usual, as time is always short and we have received your evidence, we will go straight into questions. Rhianon is going to start. Rhianon.

Diolch, Chair. Welcome, this afternoon; it's lovely to see you all. In regard to the information that you've furnished this committee with and previous evidence that we've taken from previous witnesses around this important matter, there's been a theme emerging in terms of lack of awareness of carers' rights, which the social services and well-being Act from 2014 was devised to set right. So, in your perspectives, and from your points of view, would you agree with that as a premise, that there is a lack of awareness, or do you feel that the current situation now around carers' rights is in a different place to where it was before 2014? I don't know who'd like to go first. You don't all have to answer. 

Certainly, the theme that emerged when we spoke to carers across Wales was that there is a lack of information. If we look at the carers assessment, the majority of those who we spoke to had no awareness that it was something that they were entitled to. They didn't know what it was. On occasion, when individuals did know what it was and they'd heard of it—typically, they would hear of it through third sector organisations or through other families who were going through a similar process—they would not know how to then access a carers assessment or where to go for that information. They typically would go to a third sector organisation, but they didn't know where they could look. So, specifically with access to information around carers assessments, that's poor, but then looking specifically at different local authorities and the types of services that they provide, again, we're looking at speaking to the carers who we did speak to, they didn't know where to start to look for information. Again, they rely on other families, they rely on friends of the family—

So, more word of mouth from others that they know of, rather than through official organisations. In terms of that interface, what would be the portal? Because we have many different local government portals and interfaces, where would be the place that that would be ideally within so that you know that it can be signposted to a certain area? Or, is it purely across health, purely across local government, purely across social services?

In 2015, Mencap Môn got premises to provide a hub. Not only does that provide support and sessions for our young people with learning disabilities who are out and about, probably having direct payments, but also for parents, because we felt that we were all alone and floundering on our own, and the fact was we all came together and we can all support each other. In the last two years, people have—. I was saying before that one mum with an adult of 33 only found out last year that she could have a rates reduction on her council tax; she had no idea. Quite a few of us had no idea either, and we don't know where we should have got that information from. But she didn't have it, so several other people have applied for that now. But it's where you go. We want the one-shop place that everybody could go to.  

14:05

I think there are certainly issues in terms of there being systematic challenges around how local authorities target information to specific carers. So, we did a PhD study a few years ago looking at the impact of caring on older carers of people with a learning disability. 

It was about three years ago. We're currently funding a PhD at the moment looking at the impact of the social services and well-being Act on people. I think one of the challenges that people have is that they don't know where to go for advice and information. So, you have systematic problems but you also have attitudinal problems. I was speaking to a mother yesterday who was telling me that her and her son's social worker—so, she has a son with autism and learning difficulties in his middle teens—told the mother that she thought she was being selfish for wanting a career. So, there are attitudinal problems for carers in terms of whether social workers really understand their rights as a carer to have careers, to have proper support, to have respite. And so we have to find solutions under the Act that both address the systematic problems and challenges that local authorities aren't providing the right advice and information to parents and carers, but also to how you change the attitudes of those working to support parents and carers. My view is that by having good third sector organisations providing that intermediary role, they are able to speak to the parents and carers about their rights and what they can access in that local authority area, but they're also able to interpret for parents and carers, because often the information is so complex.  

And perhaps it also needs teasing out, because coming here today, as the chair of Mencap Môn—a representative of other parents—it's difficult. If I go out, and if I met you anywhere else but in this room, I'd be telling you about my wonderful son who volunteers, who has a job, who has a great life, who does this, that and the other. I would not tell you that I need to be there to see to him in the morning to make sure that he doesn't go out in his pyjamas, to make sure he has a shower, to make sure he cleans his teeth. I wouldn't tell you about the 24/7 stuff that you have to put in to make him go out in the world and function so that other people will accept the way he is, and so it's really difficult. 

Yes, and I think parents find it easier to come to us—we are volunteers—because the formality of social services frightens them. We find that social workers don't always know—they don't know about the health and well-being Act.  

Okay. Professionally, they should, and we all know that social workers are hugely under pressure.  

We've got over 300 people on the register and three social workers on the island. So, their caseload—[Inaudible.

But should it be local government that is that interface? Or do you think it's a collaboration between the third sector and local government in terms of that idea? 

All right, thank you. I'm going to go on to my next question, then, in terms of what the experiences of carers tell us about the provision of information. I think we've covered that in terms of what's been said earlier, but, from your perceptions of looking after those that have got caring needs, where do you feel the gaps are there? 

A few years ago, I had cancer. I have a son with quite complex learning difficulties—he was born with part of his brain not formed and he's on the autistic spectrum. And I thought the only way out for me, because I couldn't bear to think of William on this earth without me, because I have to do everything for him really in essence, like Dot was saying, make sure they shower, make sure there's no shite on the walls after he's been to the toilet—everything, the basics in life—and I thought, 'Well, the only way out is to make sure that he's gone, that I kill him, and that I then die myself,' because, at the beginning, I thought it was terminal, that the disease was going to kill me. When I found out it was curable, then I thought, 'What do I do if it's not?' 

14:10

Parents should never be in a position where they think that the—

We've got a 90-year-old that comes in—

Ninety-three—she's got a 60-odd-year-old son with Down's syndrome. On a daily basis, she says, 'I'm only here until he goes. As soon as he goes, I can go'. She can't see—because we all worry about—. You don't know where they'll live, who'll support them, who'll look after them. As much as you want to stay as positive as you can and not to give a negative—'I don't want anybody to feel sorry for either him or me'. So, it's just a difficult position to be in. It's very wearing and, often, feeling alone is the wort part about it. 

In some ways, there's a false dichotomy, I think, by saying there are reviews looking at the impact on carers. The reality, especially in terms of carers of people with learning disabilities, is that an impact on the care or the services that the individual provides will then impact upon the carer. So, I remember, probably about two years ago, being approached by some carers in Tenby because the local authority was looking at closing one of the day services. And the people who were going there had a very happy service. Those carers, then, were thrown into this turmoil of having to work out how they fought for their sons and daughters to carry on going to a day service they loved, even though they knew the day service wasn't perfect. But for those carers, the impact on them of having their sons' or daughters' services challenged was an impact upon their mental health and, physically, they were having to travel around that county fighting for a service.

So in regard to the Social Services and Well-being (Wales) Act 2014 and its intention—the fact that, by right as a carer, you will have an assessment of your needs—would you say that the impact of that, as far as you're concerned, in your lived experience has been minimal? Because these are the very reasons why policy moved in this direction in the first place. I suppose the question from me really then is: do you feel that the implementation of those intentions through the Act has actually filtered down?   

Well, I believe both. In your instance, you've not had a carers assessment. 

Not as far as I'm aware. But often, you don't—. There's a bit in here about the 'what matters' conversation. Somebody might have had a 'what matters' conversation. I might not have known what they were asking me. So, you give what you think is, off the cuff— 

Without realising that could be deemed as a 'what matters' conversation. 

Yes. 'What do you do on a Tuesday?' 'Well, perhaps we go to a bingo session on a Tuesday.' 'Oh, they don't need care on a Tuesday, then.'  You don't know whether—

Yes, it needs to be more apparent—

It needs to be uniform across the country, because it's used in different ways in different counties. 

And the emphasis on the well-being aspect needs to be far broader, so tackling the issues that Jane mentioned here about life after the carer. That's the issue that's causing the most anxiety. 

Every parent that comes into our hub, every other parent that we speak to—that is the thing that keeps them awake late at night. I mean, I'm in my 70s, and, if I'm not here tomorrow, I have no idea who will look after them. I have two sons, one of 45 and one of 31. I have no idea what will happen, unless I put something into—. And whenever we have these conversations, we had somebody to give us—. The transformation officer came in last week and we invited her into the hub. She invited me to a meeting and I said, 'Come and talk to other parents', and she came. And she went away with information that she'd not—. She didn't know that the carers allowance stops at 60. 

I know it stops at 60. I'm 'whatting' about the fact she didn't know that. [Laughter.]

She didn't know. She had no idea that the carers allowance stopped at 60. 

And she's making decisions about our lives and our futures. 

And she's making decisions about taking money. This was about the charging policy. So, I said to her, 'If I've got this piece of paper from the Government that says, "This is how much he needs to live on", and I've got this one from the local authority that says, "He needs this many hours of care", which pan are you going to take the money out of?' So, she said, the one with the caring element'. I said, 'Am I not doing any caring?' I don't want paying, but surely I can use that caring element to get somebody to come in and—. She just went, 'Well, you've got your carers allowance'. And I said, 'I've never claimed it anyway, but also it stops at 60'. And she said, 'No, no, that's not right'. I said, 'Well, I'm telling you it is'. We had women in the room that are still caring at 80 and their carers allowance stopped at 60 and they get no other help. 

So, there seem to be, from your experiences, big gaps in the knowledge and awareness of those that are supposedly advising you in your, often, traumatic and difficult situations.

14:15

We see that with our Wales independent support and empowerment—WISE—helpline. Quite often, we will get members of local authority social workers phoning up to speak to our caseworkers wanting advice on the Act—how does it work in implementation, how does it work in operation—wanting to query certain elements of it, because they have a very limited understanding. They themselves will admit they have a limited understanding and it will fall upon us to provide them with that information.

So, in that regard, do you see yourselves as a specialist organisation that is best placed to be able to effectively work with families?

We have a model in Carmarthenshire that is funded by the local authority called the family adviser service and that, essentially, provides three officers who act as the interface between the local authority and parents and carers of people with a learning disability in Carmarthenshire. It's a very successful model because, actually, it deals with the issues before they become crisis. Just as an aside, in terms of knowledge of social workers, I had a call a few months ago from a social worker—I'm not going to say from which local authority—and that person had just been appointed as a social worker for learning disability. They'd come from another discipline, and they said, 'Does Mencap deliver training on learning disability for me, because I now have a portfolio of 100 people that I need to work with and I don't know anything about learning disability?'

Thank you. With regard to your organisation's understanding of the amount of persons that you work with, carers that have been offered an assessment, have you got a scale of that knowledge for us as a committee?

No, we don't have a number, but of the individuals that I spoke to in forming this evidence, I would say two thirds of them had no knowledge of a carer's assessment. Of that remaining one third, half of them hadn't received it. Half had attempted to receive it by speaking, asking, requesting, but had either been told that they would have it at one point, or it was just denied, saying, 'You aren't entitled to an assessment.' 

Okay, before you go on, Helen Mary's got a supplementary at this point.

Yes. It's been put to us in another evidence session that it's more difficult or less likely that people who are caring for people with a mental illness will get proactively offered a carer's assessment in comparison to somebody who's looking after somebody who's become frail and elderly or disabled. We've heard that—we don't know whether that's statistically true. Would you think that that would apply to people caring for people with learning difficulties as well—that they wouldn't be perceived as carers in the same way by the authorities, whether that's health or social services?

I think the issue is the point that you made earlier, Dot, that, actually, people don't want to talk about how complex the needs are of their sons and daughters.

We don't want to tell anybody what they can't do, and you spend your life trying to be positive, for your own sake as well—

Because there's too much negativity around—.

Yes. All the information that you get is negative. All the words they use are negative and it's not how we want to be and it's not how you want to present your sons and daughters, and you certainly—. I don't tell anybody what they can't do. I don't want anybody to know what they can't do. My son, in terms of a learning disability assessment, just said to me, 'Mum, if you don't tell them what he can do when he's on his own, who is going to know? You need to say.'

So, in that regard—it brings me down to this as a question, actually—because of that necessary hugely important mindset for you as carers, not just for yourselves, but for your children, how does that then infiltrate into when you are being given an assessment? We've had previous evidence that says that you don't want to say about what can't be done, it's what can be done. And, therefore, many don't go through that assessment period, in terms of the true scale of need. So, I don't know if you've got any comment on that, if you've not been offered an assessment. 

I think that, if we do—. I mean, I do tell the truth, but lots of mothers, and it's mainly mothers, don't tell the truth because they feel they're betraying their children.

You're betraying your son or your daughter.

And that you're, kind of, ashamed in a way.

One of the ways of mitigating that is, I think, if you're able to work with a third party that also has some sense of longevity—. Because one of the things you were saying earlier was the churn of social workers as well. So, you may have somebody and they're gone in six months. They've gone to a different department—

Less than that. And we get trainee social workers, who are brilliant. They come in, but they're gone in no time at all and then you're left to—. And they're firefighting. There's not a lot they can do.

And they say to us, 'Thank you for doing our work for us—'

And just recently, in the last three years, we've had personal independence payments on the island. Because we're Mencap Môn, and we know nearly all of our register of people—our discos are regularly attended by 200 people—so we know most of the adults on the island with learning disabilities. The PIP lady said to one of the social workers, 'On every single PIP that I've done on Anglesey, the only place they get help from is Mencap Môn.' She though that was a really big thing to say, because we've no other services. Everything that's provided on our island is provided by volunteers, apart from the statutory day services, which lots of them don't want to attend.

14:20

Okay, I've got Helen Mary with another supplementary—I'll come back to you now, Rhianon.

Again, we've heard evidence of an example where a third sector organisation is actually contracting to do the carers assessments on behalf of a local authority. So, they're a specialised mental health charity and they do the carers assessments for people who are caring for people with mental health challenges. Thinking about what you were saying, Mrs Gallagher, about how difficult it is to open up to somebody to actually talk about the challenges that your sons would face if they hadn't got you, and, therefore, the work that you have to do to look after them, would there be merit, perhaps—do you think parents would find it easier if the assessments were being done not by a local authority social worker but by a third sector organisation that specialised in your particular issues?

Yes, because they would know that we weren't actually just running our son and daughter down possibly to get more benefit, another night's respite or to get whatever. They would know that that's how life is for an adult with a learning disability. We're often told, with social workers, the only way to get anything is to over-egg it. It's not what you want to do. Respite is just something that we don't ever get and that most parents don't know about. 

They say, if you start talking about it, 'What's respite? We've never had respite.' We've never had respite, have we?

In that regard, in Scotland there is now a right to respite for carers, or an availability of that, but we don't seem to have, in your scenarios, even got to that position. So, how important would respite be to you in your particular situations?

I think respite's really important, but, for me, respite for my sons is more about them having a better time than a weekend with their mum. I don't want him to go to sit in a house with other people doing nothing for the weekend so that I can lie on the bed and feel, you know—

It's quality. I want them to go and do—. If somebody said, 'We're going to go to the cinema in Chester and we're taking three or four people'—in the hub, we're hoping to do that with direct payments. We're thinking that people can use their direct payments to fund—you know, perhaps go away with two or three friends. Lots of them don't need one-to-one—one support worker to take them for the weekend. He'd have a good time, I'd have a rest and that would be fine.

An interesting point is that the reason we decided to present our evidence with Mencap Môn is that not only are Dot and Jane parents and carers, and they have a role as parents and carers of their sons, but they also, by having to set up the hub, have had to create a service for other people with a learning disability on the island. So, I guess the insight that you have is both as parents and carers of your own family members, but also the fact that you know that services are bad on the island so you're having to provide your own—.

We had to do something. You'll obviously know how direct payments work, but if you're somebody with direct payments and you've got six hours that week, you want to spend those six hours well—not only do you want the person paying for that to get value for money but you want the person using that to have a great time. But if you go into any cafe anywhere in north Wales, you'll see people sat with a one-to-one carer having a cup of tea and doing very little else. We decided that we could not go on like that. So, we set up the hub, and we've got sessions—we've had sailing sessions, we've had people coming in to talk about politics, we've had people coming in to talk about health, we've had diet stuff going on, we've brought drama and ukulele sessions, and we've had Elvis impersonators. So, they can come in to choose a session to go to. They enjoy themselves and we feel like we're providing—everybody's getting value for money.

But if we look out in that room and you've got six support workers who are all, one-to-one, sat on a settee, there might be £1,000-worth of hours in money of ours in a week on that settee, so nobody's getting value for money. What we wanted was a place where people could co-opt—. If I get six hours of care and Jane gets six hours of care—we do this and we've been doing this for three years—we co-opt our hours so we actually get 12 hours of care, and our boys go off with a mate and do something really good. So, hopefully, it works for everybody, and that's how Mencap Môn—. So, that's why we set the hub up, but it's been a massive struggle, and we get no money for rent, we don't get any money from anywhere—we're just fighting all the time.

14:25

A solution—because nobody else was doing it.

Yes, and we couldn't do it without Mencap Cymru.

We wonder, you know—we want to hand it over, but what's going to be there when we're gone?

Okay, I think I know the answer to my next question, so perhaps I'll address it to Wayne and to Leanne as well. So, with regard to your experiences as an organisation of carers across Wales who are accessing local authority services, do you feel that they, local authorities, are fulfilling—?

Do you feel that local authorities are fulfilling their obligations under the social services and well-being Act?

I would say 'no', just in the sense of, certainly, the increase we're getting in carers who are calling the helpline asking for support. Three years ago, we might have dealt with just over 100 quite intensive cases. To date, by the end of October this year, we're on 250-something. So, it's obviously increasing. Of course, there are other organisations that work with family carers as well, so the All Wales Forum for Parents and Carers will have direct experience, but, certainly, the people who come to us as a sort of crisis service would indicate that they're not getting the support they need, and there's not enough knowledge to support them.

A supplementary, perhaps, Chair, if I may. You might not be in the position to answer that, but in terms of us coming up with some recommendations to offer some solutions, do you have any take about why they're not meeting their obligations? You've mentioned, Wayne, attitudinal problems, and that is obviously—. It's also a massive training need, and also, to me, it's a recruitment issue, because why are these people working in these situations—not in terms of the lack of knowledge, because you can give people knowledge, but anybody who tells a parent that they shouldn't be going out—? Anyway, don't get me started on that. You mentioned, in an earlier answer to Rhianon, something about the systematic issues that you feel as an organisation are getting in the way of local authorities meeting the requirements.

I think it does come back, again, though, to the lack of knowledge, because what we're finding is that the carer will phone and say, 'I've been denied this by my social worker', and we will then engage with that conversation, and push back on the social worker and say, 'Well, that individual is entitled to this', and they will put their hands up and say, 'I just didn't know, I'm awfully sorry' and then things will change. So, it's that—again, it always comes back to the lack of awareness. They're saying 'no' as almost a default, because it's easier to say 'no', because the repercussions aren't as bad as saying 'yes' when something isn't allowed. So, again, it keeps coming back to a lack of awareness.

So, that's about the front-line staff not being properly trained in what people's rights are under the Act, either carers or—

Getting to those front-line staff often can be really difficult. You feel like barriers are put up all the way, because you go to social services, you meet somebody on the front desk, you have to get a badge to go into somewhere else, you meet somebody on another desk—. By the time you see a social worker, you've given up and that's six hours of my life I'm not going to get back. So, you tend not to sort of—you know, you try and do it another way, and basically ring Mencap.

But there is a desire to learn by the front-line staff—

Yes, it's not that they don't want to do it.

—because quite often they will phone to speak to our caseworkers to want to know how to do something, and we deliver toolkit sessions, and the aim was to deliver these to parents and carers so they're more informed around the Act. But now we have requests from the local authority who want us to come in to speak to the staff there so that they develop their knowledge. There's certainly a desire, but it's their capacity and how much can they possibly—. For me, it all does really come back to that it's being denied. Services aren't always being accessed, because, one, parent carers aren't aware that these services are there, and then, secondly, if they aware, typically through word of mouth, then they're being denied them because the social worker doesn't know that the individual has the right to access those. But as soon as we push back, then typically the service is then granted. There's no reluctance afterwards.

14:30

Thank you. There's a question here about the need for respite to be tailored to individual needs, and you've given us some really interesting and positive examples about how that can be done. I just want to go more broadly for Mencap as an organisation: how much unmet need do you think is out there for respite services for people taking care of adults with learning disabilities? It must be very difficult to put a figure on it, I guess, but— 

It is hard to put a figure on it, but almost, I'd say, fortnightly we would have calls from various parts of Wales just asking us, 'What type of respite service do you know that is available in our area?' So, we do get calls from parent carers asking about respite, certainly.

And the other thing you can't do is—. If you invited me to something here in four weeks' time, on such-and-such a day, I might not—. You wouldn't get respite for that because it's two years—. It's something like 30 weeks—. 

Thirty weeks—. Thirty months in advance. You can't do nothing spontaneous in your life, ever. 

We have one example here where a person asked for respite and then was offered the respite four years later. That was one case, but we do have various cases where there have been several, several months—years down the line. Only then has respite become available.

And on Anglesey, we've got one respite house with four beds.  

But you only need an emergency of somebody having nowhere—of being at the whole—. 

—perhaps been taken ill, or somebody else in the family has died or something's happened, or that person just has lost the plot because they're not happy in their situation. They get removed from their home; there's nowhere else for them to go, so they go into the respite bed, and the respite then, even if you've got a respite next weekend, you can't have it because somebody's taken that bed. That's an emergency placement, and it's sick just to think—

And I think you said 300 families that you know of—over 300, and four beds. 

Yes, which is why we're helping with the hope that if we can go around this co-option with hours, that people can choose to do something with a friend and pair support workers between themselves to go off and do something different. 

Well, I think also there's an issue—if you think—the hub. They rent a building on the High Street in Llangefni because they wanted a very visible space so that people could see that there were people with learning disabilities in the community. They were looking then, weren't you, at trying to find another venue—?

A bigger venue because the venue is not fully accessible and it's too small. But trying to then find ways of how that would be funded—

We couldn't find any funding for anybody to do that for us at all, and it would have been a tremendous place to be—

Even though you were supporting them with service delivery on the island. 

Yes. We have—and there's nothing else that goes on—we have football on a Monday, swimming on a Tuesday, games on a Wednesday, we have Thursday night off.

And you have discos every six weeks. 

And discos every six weeks, but we get three Thursdays off. We have the hub all day Friday, and then we do trips or whatever we can do on the weekend and things. So, we're like full-time workers as well as being a full-time employee for the council because I'm now an employer, which I never wanted to be, but I employ support workers for my sons to do direct payments. I didn't ever want to do that, but I am, that's what I do. I have to employ an accountant; I have to employ staff; I have to have insurance. All of those things—it's not what I wanted to be. I was just a mum. I want to be—

Chair, can I ask for a bit of clarity around that? This has been brought up a number of times. Could you just explain further to that the reasoning—? I mean, I do understand, but the reasoning why you had to do that.

To get direct payments. Otherwise, they would have had to go and sit in a day centre. They would have only offered me day centre. 

If you use direct payments, you employ a number of staff directly, rather than the local authority doing it. 

So, we have to do everything around employment, as well as—. You've not only got to find those people and then you've got to employ them, and then they may go off sick or they may have a baby. You've got to find somebody else then to do all of it. It's a nightmare, and we haven't got time. 

Right. We're coming towards the end now. Helen, have you got a question? Your final question then, because of time. 

Yes, I've got just two things because I think some of the other questions—we've covered them, because we've had quite a wide-ranging discussion. I was just wondering in terms of both of your experiences on a small—and your national experience, what's the experience of people either wanting to access carers' assessments, carers' support, or, indeed, your service users wanting to access services through the medium of Welsh?

Well, we're pretty good at that, really. 

On the island, we do everything bilingually and most of our mums are Welsh speakers.

14:35

So, in terms of the helpline service that we provide, we provide that both in Welsh and in English, and predominantly in the south, our calls will be and any correspondence will be in English. In west Wales, we do have, I think, at the moment, one active case, which was is in the medium of Welsh, but bilingual. If you look at north Wales in terms of who we support there, there are four families at the moment who want their services to be delivered in Welsh. So, any work we do with them, it will be done in Welsh, but any correspondence from local authorities, they would want that in the medium of Welsh, and that's provided. But I don't think—since at least I've been here, there's never been an issue of a service not being provided in Welsh where an individual has wanted it in Welsh.

Shall we just go to the last question, then, Chair? I think we've covered things; we've covered the direct payments and the impact on carers of lack of support, haven't we?

Thank you. Sorry, Helen. So, in regard to the wide-ranging discussions that we've had this afternoon and the evidence that you've presented to us as a committee, what would your key recommendations be for improving support, and also for the future of the social care and well-being Act?

For me, just in terms of the parents and carers, the model that I talked about earlier—I'd like to see regional partnership boards commissioning specific learning disability advice and support for parents and carers on a regional partnership board footprint. So, at the moment, we have the service that's funded in Carmarthen—actually, that should be for the whole of Hywel Dda—and likewise, the other regional partnership boards should be commissioning those services. I think generic advice services don't work. Rebecca Evans, when she was social care Minister, came up and spent the morning with you in the hub, and lots of the cases, and people that you introduced her to, explained that when you're going to generic advice, it's just prolonging the process because, ultimately, those individuals are passed back to Mencap because they need specific advice.

I know you'll have heard lots of evidence today, especially from elderly, et cetera, and, obviously, I'm over 70, so I'm almost there, but my sons—

My sons have never made the choice. I've had the whole of my life to get ready for now, to get ready for my future, to have a pension. My sons have never had that choice; it wasn't a lifestyle choice for them. One was born with Down's syndrome and one was born with muscular dystrophy and learning disabilities. It's not a lifestyle choice and it's not something they've ever been able to plan for. So, for them, they need you, they need us to make sure that it goes right for their future when I'm not here to be able to do it. 

The support when we've gone, and the issue of housing. Where are they going to go? Where are they going to go?

Good. Excellent. We're out of time. Excellent afternoon session.

Diolch yn fawr iawn i'r pedwar ohononch chi. Diolch yn fawr iawn.

Thank you very much to the four of you. Thank you very much.

You will receive a transcript of the proceedings so you can check that you've said what you've said. You can't change your mind about anything, but, you know. Anyway, diolch yn fawr iawn ichi.

8. Papur(au) i'w nodi
8. Paper(s) to note

At fy nghyd-Aelodau, rydym ni'n symud ymlaen rŵan i eitem 8 ac mae yna bapurau i'w nodi. Byddwch chi wedi darllen y llythyr am ddeintyddiaeth yng Nghymru, gwybodaeth ychwanegol gan Fwrdd Iechyd Lleol Prifysgol Abertawe Bro Morgannwg ynghylch practisiau prototeip. A llythyr gan Gomisiynydd y Gymraeg a Chymdeithas Alzheimer's Cymru ynglŷn â gofal dementia siaradwyr Cymraeg. Pawb yn hapus i nodi'r rheini? Diolch yn fawr.

To my fellow Members, we now move on to item 8, and there are papers to note. You will have read the letter about dentistry in Wales, additional information from Abertawe Bro Morgannwg University Local Health Board regarding prototype practices. And a letter from the Welsh Language Commissioner and Alzheimer's Society Cymru regarding Welsh speakers' dementia care. Everyone content to note those? Thank you very much.

9. Cynnig o dan Reol Sefydlog 17.42(vi) i benderfynu gwahardd y cyhoedd
9. Motion under Standing Order 17.42(vi) to resolve to exclude the public

Cynnig:

bod y pwyllgor yn penderfynu gwahardd y cyhoedd o weddill y cyfarfod ac eitem 1 y cyfarfod ar 21 Tachwedd 2018 yn unol â Rheol Sefydlog 17.42(vi).

Motion:

that the committee resolves to exclude the public from the remainder of the meeting and for item 1 of the meeting on 21 November 2018 in accordance with Standing Order 17.42(vi).

Cynigiwyd y cynnig.

Motion moved.

Eitem 9: cynnig o dan Reol Sefydlog 17.42(vi), am y tro cyntaf, i benderfynu gwahardd y cyhoedd o weddill y cyfarfod heddiw ac o eitem 1 o'r cyfarfod ar 21 Tachwedd. Pawb yn hapus? Hapus. Awn ni i sesiwn breifat nawr.

Item 9: motion under Standing Order 17.42(vi), for the first time, to resolve to exclude the public for the remainder of today's meeting and for item 1 of the meeting on 21 November. Everyone content? Content. We'll go into private session.

Derbyniwyd y cynnig.

Daeth rhan gyhoeddus y cyfarfod i ben am 14:39.

Motion agreed.

The public part of the meeting ended at 14:39.