Y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon - Y Bumed Senedd
Health, Social Care and Sport Committee - Fifth Senedd25/10/2018
Aelodau'r Pwyllgor a oedd yn bresennol
Committee Members in Attendance
|Angela Burns AC|
|Dai Lloyd AC||Cadeirydd y Pwyllgor|
|Dawn Bowden AC|
|Helen Mary Jones AC|
|Julie Morgan AC|
|Lynne Neagle AC|
|Rhianon Passmore AC|
Y rhai eraill a oedd yn bresennol
Others in Attendance
|David Davies||Coleg Brenhinol y Therapyddion Galwedigaethol|
|Royal College of Occupational Therapists|
|Julie Mullis||Coleg Brenhinol y Therapyddion Lleferydd ac Iaith|
|Royal College of Speech and Language Therapists|
|Matthew Jenkins||Diprwy Gyfarwyddwr, Partneriaeth a Cydweithrediad, Llywodraeth Cymru|
|Deputy Director, Partnerships and Co-operation, Welsh Government|
|Sally Payne||Coleg Brenhinol y Therapyddion Galwedigaethol|
|Royal College of Occupational Therapists|
|Sarah Tyler||Cyfreithiwr, Llywodraeth Cymru|
|Lawyer, Welsh Government|
|Vaughan Gething AC||Ysgrifennydd y Cabinet dros Iechyd a Gwasanaethau Cymdeithasol|
|Cabinet Secretary for Health and Social Services|
|Zoe Piper||ADHD Connections|
Swyddogion y Senedd a oedd yn bresennol
Senedd Officials in Attendance
|Catherine Hunt||Ail Glerc|
|Katie Wyatt||Cynghorydd Cyfreithiol|
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 y cyfarfod am 9:30.
The meeting began at 9:30.
Croeso i bawb i gyfarfod diweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. A gaf i estyn croeso i'm cyd-Aelodau? Rwy'n credu fel pwyllgor y dylem ni fod yn diolch yn ffurfiol i Rhun ap Iorwerth am ei gyfraniad i'r pwyllgor yma dros y blynyddoedd ac, yn yr un modd, yn croesawu Helen Mary Jones fel aelod newydd o'r pwyllgor iechyd yma yng Nghynulliad Cenedlaethol Cymru. Gallaf ymhellach egluro, yn naturiol, fod y cyfarfod yma'n ddwyieithog. Gellir defnyddio 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. Os bydd y larwm tân yn canu, nid oes yna ymarfer, felly bydd yna dân yn rhywle, felly dylid dilyn cyfarwyddiadau'r tywyswyr yn yr achos yna. Mae'r meicroffonau yn gweithio'n awtomatig, felly nid oes angen cyffwrdd â dim byd.
Welcome, everyone, to the latest meeting of the Health, Social Care and Sport Committee here at the National Assembly for Wales. I'd like to welcome my fellow Members. I think, as a committee, that we should formally thank Rhun ap Iorwerth for his contribution to this committee over the years, and, similarly, we would like to welcome Helen Mary Jones as a new member of the health committee here at the National Assembly for Wales. I would like to explain that this is a bilingual meeting. You can use headphones to hear simultaneous translation from Welsh to English on channel 1, or amplification on channel 2. if you do hear the fire alarm, there will be a fire, so you should follow directions from the ushers in that event. The microphones do work automatically, so you don't have to touch anything.
Felly, rydym wedi cyrraedd rŵan eitem 2 ar yr agenda a pharhau efo'n craffu ar y Bil Awtistiaeth (Cymru) arfaethedig. Dyma sesiwn dystiolaeth gyda Choleg Brenhinol y Therapyddion Iaith a Lleferydd, Coleg Brenhinol y Therapyddion Galwedigaethol a hefyd ADHD Connections—cysylltiadau ADHD, efallai. Felly, i'r perwyl yna, dyma inni groesawu Julie Mullis, ymgynghorydd awtistiaeth, Coleg Brenhinol y Therapyddion Iaith a Lleferydd—bore da i chi; David Davies, swyddog polisi Cymru, Coleg Brenhinol y Therapyddion Galwedigaethol; Sally Payne, cynghorydd proffesiynol plant, pobl ifanc a theuluoedd, Coleg Brenhinol y Therapyddion Galwedigaethol; a Zoe Piper, cadeirydd yr elusen ADHD Connections. Bore da i chi gyd.
Nawr, yn ôl ein harfer—. Diolch yn fawr, gyda llaw, am y dystiolaeth ysgrifenedig ymlaen llaw—bendigedig—ac yn ôl ein harfer, gan fod yr amser braidd yn dynn, mae yna waith caled o'n blaenau ni, awn yn syth i gwestiynau. Mae Aelodau yn mynd i ddelio efo gwahanol feysydd. Nid oes rhaid i'r pedwar ohonoch chi ateb bob cwestiwn, neu efallai y byddwn ni yma trwy'r dydd. Ond os oes rhyw ongl wahanol i ryw ateb, teimlwch yn rhydd i gyfrannu. Mae Helen Mary Jones yn dechrau'r cwestiynau.
So, we have now reached item 2 on the agenda, continuing with our scrutiny of the Autism (Wales) Bill. This is an evidence session with the Royal College of Speech and Language Therapists, the Royal College of Occupational Therapists and also ADHD Connections. So, to that end, I'd like to welcome Julie Mullis, autism consultant from the Royal College of Speech and Language Therapists—good morning; David Davies, policy offer, Wales, the Royal College of Occupational Therapists; Sally Payne, professional adviser, children, young people and families, from the Royal College of Occupational Therapists; and Zoe Piper, charity chairperson for ADHD Connections. Good morning to you all.
As is usual, thank you for your excellent written evidence, which we received beforehand, and, as usual, since time is a little bit tight and there's hard work in front of us, we'll go straight into questions. Members will deal with different areas. All four of you don't have to answer each question, or perhaps we'll be here all day. But if there's any different angle to any answer, please feel free to make a contribution. Helen Mary Jones will start with the questions.
Good morning. Bore da. Thank you for your written evidence. You've expressed in that written evidence concerns about the Bill. So, just on the record, can you briefly outline for us what those concerns are? I don't know who wants to start.
Shall I start? [Inaudible.]—are quite consistent from our members and their concerns, which are consistent with those of other professionals within other royal colleges. We think access to services should be based on need, not diagnosis. We don't think the Bill should focus on that. There are workforce issues; we think our limited workforce should be focused on needs, not on neurodevelopmental disorders. We think there might be increased demand for diagnostic assessments that will push resources away from the quality interventions that service users want, and we are worried that the resources will be focused on compliance with law rather than the service users.
Can I just come back on that? If you're saying to us that there isn't a sufficient workforce to do the diagnostics and meet this need, isn't that an argument for us to be telling the Welsh Government that we need to do something about the workforce, rather than an argument not to legislate?
Yes, it's part of what we are talking about now. There are obviously big changes in health and social care with 'A Healthier Wales', but our practitioners understand that there's only so much money. Our practitioners live in the real world, so there are only so many occupational therapists and speech and language therapists. And, at this moment, they would the think that the focus would go on to that diagnostics away from that, because there's not enough workforce.
Can I add—? I think in terms of the workforce issues, we are already having difficulties with recruitment. A difficulty with that is that our speech and language therapists are currently feeling that they're spending too much time on diagnostic assessments and not enough time on interventions. And I don't think creating more posts is going to necessarily help that, because they've got to come from somewhere. At the moment, I think we're already employing all the specialist speech and language therapists who are interested in autism, with the creation of the new services—the neurodevelopmental service, the integrated autism service. I've got vacancies at the moment that have been difficult to fill. So, I think that that is a very real issue.
Our primary concern in the Royal College of Speech and Language Therapists is for those individuals who don't meet the criteria for autism who still have significant needs. Our concern is that, by focusing on—. With the autism legislation, the resources will be put more into that, because they'll have targets to meet in order not to breach, and other areas of the service will be detrimentally affected. It may even be considered discriminatory. So, I think that that is our primary concern. We very much welcome the focus that has been on autism. We're very proud of the fact that Wales was the first country to have an autism strategy. We welcome the new innovations in ND and IAS, and we know that there's still work that needs to be done, we know that there's still room for improvement, but we don't feel that legislation is the way that will be achieved.
Angela's got a supplementary on this point.
Yes, I just wanted to ask a quick question. Do you believe that autism is a unique condition?
Absolutely not; I think there's a lot—. Yes, it is a unique condition, there are clear diagnostic criteria for it, but frequently in overlap with other neurodevelopmental disorders—
Can I just stop you there? Because, of course, you can have cancer and you can have pneumonia—
Absolutely. Of course.
—and you have—. So, you can have multiple conditions.
But I would like to know whether or not autism itself, as a condition that affects your social and emotional capacity, reigns quite unique compared to other neurodevelopmental conditions.
Yes. I'm part of the second opinions clinic in Cardiff and Vale, and clearly it is a very well-defined diagnosis. I think we—. Through the proper procedures and multi-disciplinary assessments, we always come to a consensus as to whether we feel that somebody has got autism or not. And—
Sorry, can I just—? I do want to drill down on this one point.
So, you could have a number of neurodevelopmental conditions that give you a range of symptoms and a range of needs that you might have, in the same way you can have a range of physical illnesses that all might make you feel sick, but it's not all the same condition. What I really want to understand is: if you are autistic, are you unique within the whole field in terms of having that complete barrier to your social and emotional capability? Because other conditions, as I understand it, are able to seek an improvement in different ways. I just want that clarification.
I think it's a much more nuanced answer than 'yes' or 'no'. There are children who've got other developmental conditions, such as attention deficit hyperactivity disorder or have sensory processing difficulties. These things can cause a great deal of anxiety; anxiety can cause people to be socially avoidant. So, it's a very complex thing to investigate. I do think it has well-defined criteria, and if you have, for instance, somebody who has cancer and they have autism, the approach to dealing with them has to take into account the fact that they have autism. So, it is something that is part of the person; you can't take that away from them. But in terms of—
Zoe's got personal experience, haven't you?
Yes. Just to say that my son was diagnosed with ADHD at the age of six, but about the age of two there was something clearly not right with him. We went through the autism process and they said, 'No, he hasn't got autism, but there's something there.' By the age of six, we had then had a diagnosis of ADHD. Now, at age 15, he has an autism diagnosis, and the older he's got, the more complex he's got. Although the symptoms weren't there when he was younger, because the ADHD was masking a lot of the autism symptoms, the older he's getting, the autism is becoming more prevalent.
So, it's a mixed picture. Yes, sorry. Helen.
So, if you don't think legislation is the way to proceed, would you accept that action is needed to improve outcomes for people with autism spectrum disorders and, if so, what would your preferred solution be for this?
I think we're all supportive of the need to improve outcomes and services for people with autism and their families. I think that there is legislation already in place that will look at improving services for people, and we would like to see the benefits of that, before adding in another layer of legislation.
Do you think the legislation will be helpful?
No, I don't. I don't think it'd be helpful. I think that, at the moment, we're developing and we've got the new neurodevelopmental services. We've got the new additional learning needs Bill, which hasn't come in yet. With those, I believe we should then improve not just things for autism, but for children in general. I think that we should be focused on what we've got right now and investing in the implementation of that rather than investing in something that is going to take a lot of money, time and effort and, in the meantime, what are we going to do?
The integrated autism services have only just been rolled out. As an occupational therapist—I worked in a community mental health team, where I had people with autism later on in their journey who had mental health problems—they would have been invaluable to my practice. I think you had really good evidence from the integrated services a couple of weeks ago about their outcomes and the things that are starting to change. So, they haven't all rolled out yet in every area, but, the areas where they have rolled out, it seems to be positive. I know, as a therapist in a community mental health team, that would have been invaluable when I'd seen my patients.
Okay. I'm still a bit unclear about why the legislation would be a problem, but, taking on board particularly what you've said, you'll be aware that the Welsh Government is intending to produce a statutory code of practice on autism spectrum disorders. Do you have similar concerns about that as you would have with a Bill? Because it's been put to the committee, in a sense, that, if you've got the statutory code of practice, you don't actually need primary legislation. What do you see as the differences between legislation—the Bill that becomes an Act—and the statutory code?
I think we feel that a code of practice allows more flexibility, so if we see—. It can be more responsive to changing needs. We hope that services will develop—clinicians will innovate and respond to situations that they find themselves in to improve services for people and their families. And we feel that there'd be more opportunity to do that within a code than within the legislation.
So, it would be easier—. Does it then become more difficult, though, for—? If it provides flexibility for clinicians, does it become more difficult for people with autism spectrum disorders and their families to get access to their rights and to enforce those rights if they're not getting them? Because flexibility—. I'm not for a minute suggesting that's what you mean, but 'flexibility' can be a code word for 'getting away with it'.
I think it allows more flexibility for clinicians and families to work together to improve things, to improve services.
Okay. We'll move on to the next block of questions. Lynne Neagle.
Thanks, Chair. We've talked a lot in the committee about diagnosis and whether the Bill will lead to an over-emphasis on diagnosis. Can you just expand on your concerns in relation to the focus on diagnosis?
Yes. Absolutely. We are finding that, at the moment—. One of the first questions we ask parents when they come seeking a second opinion is: what difference do they feel having a diagnosis for their child would make? They always say, 'It would mean that my child will get support, whereas, at the moment, they're not getting the support that they need.' So, they're striving for something for the wrong reason. Nobody comes seeking a diagnosis because they want a diagnosis. They come seeking a diagnosis because they want the support. I think what we need to be doing is working out how we can focus more on support rather than diagnosis. At the moment, the balance is wrong.
Again, going with that, I contacted social services regarding a case and I was asked what condition that child had and I said, 'ADHD'—'Sorry, we don't offer any help and support for that, but, if they had autism as a comorbid condition, then we'd be able to help and support you.' I deal with 300 or 400 families in Wales who've got children with ADHD and/or autism, and the label of autism has a much heavier weight in terms of the support and help you can get. A lot of my families will try and get an autism diagnosis alongside ADHD because of the help and support that you can get. I don't believe in putting a label on a child just because you can get that support—that support should be there regardless of what label that child has.
And, as things are at present, in your experience, when parents do get the label, do they then get the services that they want?
It's unbelievable what you get in terms of an ADHD diagnosis compared to an autism diagnosis. It's wrong, but it's the way it is. I just think that we need to invest more in taking away the labels and going more on actually what is wrong, where are you struggling with a child, rather than what label is attached to them.
Angela has got a supplementary. I'll come back to you now, Lynne.
Sorry to cut across you, Lynne. But, just again, I've got a real issue with this bit about the diagnosis. One thing I hear is that if everyone can't have it then no-one can have it, and that slightly worries me. But the second—
That's not what we're saying.
—thing that I really hear as well is this business about diagnosis. Why isn't the diagnosis important? Because if you had a physical illness you would want the diagnosis for support re treatment so you could get the right treatment. So, we're saying that this is a mental health condition; it's not a treatable condition as in anything that would make you better, but you can get the support that helps you to live your life. So, if you substitute that word 'support' for 'treatment', in every other walk of life where we're dealing with physical ailments—and our NHS is built around the physicality of our bodies rather than our mental health—we actually seek a diagnosis so we can get the right treatment. Why isn't it appropriate then to seek the right diagnosis for a mental health condition so you can then get the right treatment, i.e. support? And I do take your point about the issues about people with ADHD, but then surely our job is to put a standard in and raise everyone up to it, not to keep us all flat?
Can I just say, first of all, autism isn't a mental health condition? People—
Well, a condition—a neurodevelopmental condition.
People who have autism can have mental health conditions.
Yes, apologies, I meant neurodevelopmental.
Our concern is not about people having the right diagnosis or not, because absolutely we believe that that is the right thing to do, and there are obviously clear advantages in people understanding what their condition is and what their family member's condition is, and that is not an issue. The issue for us is whether it should always precede the support that's given. As speech and language therapists, we have to start working on how we can help children to communicate, whether they've got a diagnosis or not. So, for us, it's about supporting needs. Quite often, you can do an assessment of needs without actually knowing what label the child may have. For instance, if a child is—. We know so much more now about co-occurring conditions, comorbidities. You may have a child in front of you who's got sensory processing difficulties, ADHD, high levels of anxiety. Their needs may be very similar to a child with autism, and what we don't want is not to be able to refer them to the autism outreach service because they don't have autism. So, diagnoses are very, very important but they shouldn't be barriers to people getting the support and the services that they need. I think that is the point that we're trying to put across here.
Anybody else on that?
Can I just say? The diagnosis is important. Again, the understanding of what you get from that label is so important because it helps you to be able to understand and support your child. However, I don't think it should then be the be-all and end-all of what you get from it. It's more about the actual complexities of that child, not the label that's attached. It's not about the diagnosis, it's about—you know, there's more to it than just the diagnosis.
Yes. Knowing that a child has autism doesn't tell you very much about them. The spectrum is so broad that you still need all the information about their presentation and their difficulties to be able to help them anyway. So, it's kind of, 'Okay, so they've got autism, yes, well, what do we do for them, then?' You still need to do an assessment of needs, and that is the bit that we should be focusing on, because they're very different assessments.
Okay, back—. I think Lynne is linking this up anyway.
Can I just ask about the current neurodevelopmental pathways and how you feel they're working? Because we've had evidence from Dr Dawn Wimpory who said that she didn't feel that the current combined waiting list was actually working well for either group of people, really.
I'm usually quite positive. The families that I've dealt with, the amount of help and support that I'm having to give in chasing appointments and finding out where they're going to—paediatrics or child and adolescent mental health services—. Because it used to be, you'd either go to paediatrics or you'd go to CAMHS. It was very muddy. Whereas now, you go to one place, the new neurodevelopmental disorders service. So, it's a lot easier for families to find out where they need to go and it's also very clear for families, the way that the pathway is written. It's written in a way that families can understand it as well. So, there's always a point of call that you can go to. So, it's a lot easier as well for families to understand the neurodevelopmental pathway.
I think Julie's point about looking at the child holistically, as an individual, and identifying all the different parts. I think we're concerned that if we have separate waiting lists for separate conditions, what happens if you start off on one pathway and don't have a diagnosis of autism? You then have to go somewhere else and be on another waiting list.
That's what happened to my son. He's under CAMHS, but because he needed an autism assessment, we then had to go on the new neurodevelopmental waiting list for him to get an autism diagnosis. Whereas, really, his doctor in CAMHS should have been able to diagnose autism. However, we had to then go on another waiting list, just so—
That doesn't make sense.
No, that's it. So, at least, this way now, it's all being streamlined to the one, and it's a lot easier to understand.
We can certainly do with CAMHS and ND teams being a little bit more integrated.
Okay, thank you. You have warned that the Bill could artificially increase rates of ASD diagnosis, including inaccurate or inappropriate diagnoses. Can you tell us what your reasoning is for that? Because the National Autistic Society Cymru have said that there's no evidence that that happened when the Bill was introduced in England.
I think it's a risk. I think it's a risk for the reasons that Zoe explained, that families are looking to access support and resources—that's why they want a diagnosis. So, I think there is a risk that people will be looking for that diagnosis. I think experienced clinicians would be very clear in their assessment that a diagnosis is appropriate or isn't.
But if there's an expectation from families that a diagnosis will lead to support, then maybe there's a risk of them feeling disappointed, that their expectations may then look elsewhere for, perhaps, a less reliable diagnosis. But, I think, our concern is that all that focus on diagnosis then takes our experienced clinicians, who could make those decisions, away from the opportunity to provide the support that families are looking for.
Okay, Helen Mary on this point.
I'm struggling a little bit with this, because you mentioned earlier that your members are very well aware that there isn't a bottomless pit and that resources have got to be targeted and got to be used appropriately. And I do completely take what you're saying, particularly Ms Piper, about this needing to look at the whole child. But how are we going to target those resources if we don't have some kind of diagnosis? If we don't understand what is going on for a child—and I completely understand that autism can present in all sorts of ways, as can ADHD, so you've got to have a conversation with the child and the family, yes, I completely get all of that. But if somebody hasn't got a diagnosis of having a problem, how do you target those resources? You can say, 'This is a child who is struggling in some way', but surely, we've got to understand in what way they're struggling and why before we can decide what the appropriate treatment is.
We'd like to see more therapists in primary care so that GPs have direct access, so that we can support a person's needs at the point at which the present, without them having to wait that lengthy time. Because, while they're waiting for a diagnosis, they still have those needs.
So, surely, isn't the problem there that they have to wait for the diagnosis and that it takes so long to get the diagnosis, not that they don't need to have a diagnosis?
I think it's because resources are focused on the diagnostic process, and what we'd like to do is to put some of those resources out so that we're supporting teachers, teaching assistants, employers, people in the real world, to understand and make reasonable adjustments.
There's so much that can be done prior to a diagnosis that may even make the diagnosis not necessary. Early intervention is being held up because we're waiting for kids to get a diagnosis.
Luckily, with autism, you can get diagnosed quite early, which is really, really good. The implementation of things can be done quite quickly. With other conditions, you have to wait until six or seven before you can even get any help and support, because you haven't got that diagnosis. I think some of the problem is that not all children will necessarily meet a full autism diagnosis. Like my son, you know. He's 14 now and he's finally got an autism diagnosis, but at three, I couldn't get any help and support for him, because he wasn't meeting that threshold. He had one or two boxes that he didn't quite tick. So, we struggled until he was six, to the point of family breakdown, because I couldn't get any help and support for him, just because he didn't tick two boxes. However, now he's 14, he has those ticked boxes. The support should have been there regardless. This is not about the diagnosis; it's about before the diagnosis—what are we going to do before we get that diagnosis? There's got to be more help and support to keep families going until we get that diagnosis, and we need support. More needs to be done.
Okay. Lynne, have you finished your block yet?
Yes, I'm fine.
Moving on, then, to Julie.
Thank you very much, and good morning. My first question was to Zoe, asking, really: could you tell us what is the current picture with ADHD in Wales—you've obviously touched on some of it already—and whether you think ADHD in particular would be disadvantaged if there was a Bill?
ADHD in Wales is non-existent, basically. The thing is, I sound like I'm whingeing and moaning about it, but it's not—it's reality. We feel like the poor relative, basically, of autism. Everything is about autism, you know, and I think that's why so many of our families want that box because, you get that, you get the help and support. There's nothing. We're struggling. Again, up to the age of six or seven, you can't get any support beforehand. Even with a diagnosis, there's no support. You go to CAMHS, you get your medication, and then you're off. There's no support in the schools. There's no support anywhere. And I honestly believe that if we focus more and more on autism, other neurodevelopmental conditions will be put aside, and more investment will be put in autism, which is great, and I get it—my son's got autism himself. However, I don't believe legislation is going to make things better for all children. It's only going to make a difference for the 1 per cent of the children in Wales with autism. There are a lot of other children that need that support.
When you say that in schools there's no support for ADHD, is it that the schools don't recognise it?
They don't recognise it. They don't believe it. There's no training. There's no support. There's nothing. And a lot of that comes down to funding. My son is not going to finish school. I get a phone call every day. Honestly, my phone—. You can see it. I feel sick every time my phone rings, because he's in trouble. But not in trouble because he's done anything serious, but because he's been talking, or because he's been interrupting, disruptive. Well, that's all ADHD behaviour, unfortunately, but they're put in mainstream schools and expected to behave and act like a child with no difficulties. That is never going to happen. So, teachers have no—. And I don't blame them. I couldn't imagine my child in the class with 30 other children; it would drive me to distraction—I get it. But what other choice have they got? They're struggling a lot. There's just nothing for them. Even a simple diagnosis of dyslexia—we can't get it, because there's no funding to get a simple diagnosis of dyslexia.
Yes, so I think you all highlight concerns about the prioritisation of ASD, but NAS Cymru's counter to this was that there's no evidence that in countries with an autism Act people are at a disadvantage, and in fact, people with autism are at a disadvantage. I don't know what comments you've got on that.
I think they are. I think any child with any neurodevelopmental condition is at a disadvantage, because of the way the system is set up, you know. There's no money to put into schools to help these children. There are no extra teaching assistants to help children with autism, or with any neurodevelopmental condition. That's where the problem lies, not—. I don't think the Bill's going to help in those terms. I think the only way to help these children is to invest more in support and support in the schools and support with the families.
So, generally, you're saying that the support for all these conditions is poor.
Well, yes—pretty much non-existent for all of them, yes.
Non-existent. Right. Okay, thanks. And I don't know whether you could say more about the higher prevalence of other neurological conditions compared to autism in your evidence and why that's important in the context of the Bill.
Yes, I think DCD, developmental co-ordination disorder, or dyspraxia, affects around 5 per cent of the school-age population. ADHD, I think the prevalence is similar. And those people have equal needs as people with autism, and have difficulty accessing everyday activities and reaching their potential in all areas of life. So, we would like to see services supporting all of those clinical needs. I think we as clinicians believe that.
Fine. Yes, that seems to be a common recurrent theme. Rhianon—chance to shine.
In regard to your earlier comments, you've been very clear, and obviously in your capacity as a royal college speech and language therapist, that's excellent for us as a committee to understand. How much—? You've partly answered some of this. How much do you feel that the Bill's focus on diagnosis—and I need to be even clearer—will potentially shift the playing field away from the needs bases of non-autistic diagnosed children? And, secondly, in terms of what you mentioned at the beginning around interventions, do you feel or not that that focus will further shift resources—whether they're person resources, i.e. yourselves or other professionals—away from interventions and more into that targeted diagnosis basket?
Okay. Who wants to take that one?
I think that's bound to happen. If there's legislation that's driving that forward, then people are going to have to think about how they should be using their time. I think one of the concerns with speech and language therapists is that they are autonomous professionals. They should be able to make a decision about how to use their time in the best interests of their patients and families. It may be that spending more time on interventions and training might be maybe more appropriate. We have to consider that prudent healthcare means that we should be meeting the needs of those who've got the greatest needs first, and somebody who's seeking a diagnosis but may not have a great amount of need, their needs, should they come before somebody who's got a great deal of need but hasn't quite got the diagnosis of autism? Speech and language therapists have to make these decisions on a daily basis, and I'm sure occupational therapists do as well, and I think that this added pressure to have to do something in a particular way because there's legislation behind it is bound to have an effect.
So, do you feel, in a sense—? And if I'm wrong I'm wrong, but from what I can glean—. Do you feel, in a sense, that it could be argued that it's actually interference in the professionalisation—to you as professionals?
Or is that too strong?
No, I think people feel that strongly about it.
I think that we're concerned that the professionals who could be part of that diagnostic and assessment process are the people who have the skills and expertise to deliver the interventions, and if all of their resources are focused on one part of the pathway, we don't then have the capacity to deliver the changes, which is actually what people and families—we believe—want.
To be clear, we're not anti-legislation, per se. We very much welcome the other legislation that's been developed—particularly the ALN Bill, which is not diagnosis driven and is very much focused on meeting needs. We very much welcome that and we feel that that will address the issues for children with autism as much as for those with other developmental conditions and other kinds of difficulties.
That's the point I was going to make, really, because obviously we've got this new legislation and we've got this new integrated service and this new code of practice—let us get on with that.
Yes. So, it's more the emphasis on diagnosis. And there's agreement on that, or not. Okay. If I can just continue with my next question, then. So, in terms of this, you partly answered this, and obviously you don't all need to respond to this. So, in terms of the Welsh NHS Confederation and the concerns that they've raised that specific legislation around a specific condition can lead to calls, as we've partially heard this morning, from other conditions to call for legislation—do you feel that that is the case? Do you feel that if this occurs, that precedent will be set, and then a whole myriad of other conditions will ask—quite rightly—'This has occurred for this condition; this is another equally as difficult a condition to manage and to be treated for'?
That was one of my first concerns: where does this stop? Does it mean that because—? Is this setting a precedent, then if ever organisations then see, 'Oh, well, they've got the legislation and they're getting this injection and having this done, well, we'll try'? So, all these other conditions will then try and get legislation, and then the smaller conditions that don't have that strong voice won't get the same—
They'll miss out.
Okay, thank you. We've already touched upon this question, and in terms of evidence that we've heard from Dr Dawn Wimpory that the Bill may benefit other conditions, in reverse to what I've just asked you, in the sense that there will be a diagnosis for everybody and therefore it will create a level playing field, rather than the opposite, because a diagnosis of not being autistic will equally open as many doors, then, to other interventions—. Is that real? What is your view on that premise?
How can it, though?
I understand her point. I greatly respect Dawn and the work that she's done, but I don't agree with her, because I believe that if you have an autism diagnosis route and the question is, 'Has this child got autism or not autism?', it limits the ability to think holistically about a child. One of the reasons why the neurodevelopmental pathway is not called the 'autism pathway' is because we're trying to move away from that narrow focus on one diagnosis and look more broadly, because we know about the myriad neurodevelopmental conditions that exist and the co-occurring conditions and the subtleties of how one affects another. So, I think when a child comes to you with concerns, with difficulties, with issues, you should be starting from a clean slate, not from thinking, 'Well, is this autism?' And I think the problem is that—. You know, Dawn might be right—if a child's got difficulties and they're on an autism pathway, at least they're being seen, at least they're being investigated, and I think that's her point. But why do we do we call it an 'autism pathway', then? Why don't we call it an 'additional needs pathway'?
But the actual point—and I understand that fully, but let me perhaps be a bit clearer—is that her evidence that she gave to the committee, I think, was centred around this premise that if you are not diagnosed with autism, you will then equally have a pathway, similar in terms of quality and quantity and interventions as the autistic pathway.
Where? Where is that?
Well, that's what I'm asking you: is there an equal pathway out there for non-autistic diagnosed children?
I think we do as good a job as we can do, you know, and if we identify a particular child's difficulties and they don't include autism, those needs still need to be met. But, you know, we have an ASD outreach team in Cardiff local education authority. There's not an ADHD outreach team, you know—
Nor a dyspraxia one.
There's not a dyspraxia outreach team.
So, it comes back again to this sort of imbalance, perhaps. Okay.
Yes. I think it's about diagnosis-led services, rather than needs-led services.
Okay. The clock is marching on, so we need some agility now in questioning, and the queen of agility is Dawn.
You wish, Dai. [Laughter.] Thank you, Chair, and actually I'm not going to spend a lot of time on question 13, because I think, by and large, you have answered it. But it is this business about co-occurring conditions. Certainly, what we've heard from NAS Cymru is that they felt that the level of understanding in the system would be improved by having this Bill with co-occurring conditions. But I'm hearing from you that you don't think that will be the case.
Our members in other parts of the UK would say that that's not the case, that the focus in education and training is around autism, and that doesn't leave the space and capacity to understand the other co-occurring conditions.
So, the fact that we get into the system a bit quicker when we say, 'Well, it's not autism'—that doesn't necessarily mean that people with other neurological conditions or neurodevelopmental conditions will have an easier or quicker pathway through to support or diagnosis.
No, absolutely. When we think about the time that teachers have for training, and if that is all focused on autism, then that doesn't leave them space to understand the other conditions too.
I understand. I won't labour the point. Can I just briefly talk about workforce, and really to follow up the question and the answer that you gave right at the beginning, Dai, about the workforce pressures? Presumably, none of you would disagree that it would be an ideal situation to have both adults and children getting through an assessment pathway and being diagnosed as early as possible. What do you consider the workforce implications are for that, and is that in itself a reason to oppose the Bill?
I think our concern is that as therapists we're a limited resource. If all of our focus is on assessments and diagnosis, then we don't then have the capacity to deliver the intervention before and after diagnosis. So, I think that's one of our main workforce concerns.
We have a half a speech and language therapist in our Cardiff and Vale multidisciplinary team, so, you know, she doesn't have a lot of time to actually do much speech and language therapy, because she's focused on just assessing children to see whether they have autism or not. I don't think that's the best use of her time, because she's very skilled and very expert. She came into the job thinking she was going to be doing intervention, and that was what she wanted to do. I'm surprised she's still with us.
Sorry, did you want to say something?
Are you suggesting, then, that the emphasis should be—with the limited resources that we've got, because there aren't going to be any additional resources for this Bill; maybe a little bit, but not a lot—on the way that we're delivering support services, and that that should be where the limited resource we've got is directed? Would that be fairer?
That would be great.
I think that would be better for therapists, because we'd be able to deliver the services that we know can make a difference to people and families, and better for people with autism themselves, who will get the support and the intervention that they're looking for, to improve outcomes.
Our members are currently grappling with this issue, with the new 'A Healthier Wales' plan, and trying to move the therapists closer to the communities and stuff like that, and more closely integrated with support service integration. So, these conversations are going on as we speak with the regional partnership boards, and they are focused on autism as part of the accord, and with 'A Healthier Wales', hopefully we can get some reconfiguration of services around that.
Sure. Okay, thank you, Chair.
Okay. Helen Mary to round things off.
I'm still struggling with this a little bit, and this isn't because it's my first committee meeting, because I have done my homework and actually was observing this process from the outside as well. You're telling us—and talking from a service user's point of view—that there are not sufficient therapists available to provide the services that are needed now. One of the points of this kind of legislation—and jury's out as to whether this legislation meets that—is that if you create a legislative right to something, then that drives changes in workforce planning, because it means that the people who are commissioning the services, different from yourselves providing it, have to provide that. Now, that's one of the arguments that have been put forward for legislating. Surely, the issues that you've been talking about are to do with workforce planning and they're to do with inadequate resources; they're not necessarily an argument for or against legislation. It isn't a valid argument for or against legislation to say, 'We haven't got enough people to deliver this', because part of the point of the legislation is to drive the people commissioning the services to make sure that you have got enough people to deliver it. So, would some of your concerns about the legislation be addressed by more effective workforce planning around ensuring that we have got enough people, both to do the diagnosis and then to deliver the services that people need? I'm talking theoretically here, because we know there isn't an endless pot, but one of the ways that you make sure that people get access to what is in the pot is giving them a legal right to it.
I think that there isn't an endless pot, there isn't an endless resource of people, and so it would have to come from somewhere else. That is our concern; we're here advocating for those people who don't have autism. Something's got to give. You say that we haven't got enough people to provide the service. We haven't got enough people to do the diagnosing that is required at the moment, but I feel very strongly that if we intervene early and we provide good training, maybe all those diagnoses won't be that necessary. It's quite a brave move, but I think we just need to rebalance.
Sorry, can I just ask—? I think that's about the third time you've said that—
I believe it.
And I accept that. I just wanted to get your view on the adult side of autism, because my understanding from my casework is that in order to access any services as an adult, you have to have that diagnosis.
Yes, it's wrong, isn't it?
Yes, but that doesn't make it—. So, by denying that diagnosis as a child, what happens when they do the transition from child to adult? Because that's where all my fights are in my constituency, where parents are saying about their children, who are moving into adulthood—they're not going, 'Whoo, they're 25. Hooray, they're better.' It doesn't happen. So, if you hold firm to that—we don't need to diagnose—what happens when they're adults?
We're not saying you don't need to diagnose.
Well, when would you diagnose, then?
When it's necessary, when it will be helpful.
And they're adults. I've just had an adult who's finally been diagnosed at 40 years old. Gosh, that's a lot of 40 wasted years they've had.
Well, not necessarily. If they'd had the support that they needed beforehand, then why would they be seeking the diagnosis?
They haven't. As soon as they left child services, they fell down the hole.
Because the support wasn't there. Because the understanding and the support wasn't there. If the understanding and the support was there—. I mean, when we have children who come to us who've clearly got autism, people already know they've got autism. Actually then having the label—they've already started putting things in place. Actually having the label makes no difference to them whatsoever. If somebody who's got to 40 who's struggled all their life, social services should have been putting something in to support that adult, whether they've got a diagnosis or not.
But the point is that they're not. So, on the one hand, you're arguing that we don't need it because we want to be universal with our services—
I think the Social Services and Well-being (Wales) Act 2014 has got a duty—
It seems as though you're flipping the coin around and as soon as they're adults you're sort of saying, 'The services should happen.' On the one hand, you're saying, for children, 'We don't want to have this Bill because we haven't got the services, we haven't got the support—we need to be just looking at what people need on a needs basis.' But then, suddenly, when they're adults, because there's not the level of care as an adult that you get when you're a child—end of—then you're saying, 'Well, then we'll give them the diagnosis in order to give them that right to have that support.
I don't think we're saying about the diagnosis—. I don't think it's about that label, but it shouldn't be that a child doesn't get the help and support because they haven't got that label. I think that's where my concern is—a child needs a diagnosis, they do need the label to understand. However, that label then shouldn't stop a child who hasn't got that label from getting the same support, just because he might have seen a doctor who didn't quite—. My son was seen, and he wasn't diagnosed with autism—he should have been, but he wasn't. Is that his fault? No. He was left without the help and support, but had he seen another doctor, would he have got it? That diagnosis is important because it does give you—again, it gives you access to help and support. So, you do need that, but what we're trying to say is: it all shouldn't matter; it shouldn't all just come down to that label. It should be needs-led as well as having that diagnosis. I was diagnosed at the age of 36 with ADHD; I've gone my whole life—struggled. But it's made no difference. I still can't access any help and support, but at least I've got an understanding of myself, and that, I feel—. The diagnosis was important because it gives yourself a level of understanding of what's going on, not necessarily what I can get out of it, but—
No, but a recognition.
And understanding. I finally know who I am, and that's what it should be more about is, taking ownership of actually what's going on, not about what you can get. That should already be there, regardless of what label you've got. You should be able to access on the amount you're struggling, what your needs are, not on that label.
I agree with you 110 per cent, but the problem is, as an adult, unless you have that label, you don't even begin to have a chance to get the support.
Even when you're filling in your Department for Work and Pensions benefit form, unless you can prove you're autistic—go out there and get a job. It's ridiculous.
And that's what needs to be changed.
And that's why we would like to see more therapists in primary care so that GPs and employers have access to that support so they can support people, make the reasonable adjustments, to enable them to be the best that they can be, with or without the diagnosis.
Okay. We're over time. Helen, do you want to round this off?
You partly answered this already, but you mention, for example, that people ought to be able to get services on the basis of need, with the social services and well-being Act, but the committee's heard evidence that that's not happening for people with autism spectrum disorders. So, how would you respond to that? You're telling us that existing legislation is enough, other people are telling us that—particularly people with autism spectrum disorder—that doesn't work for them. How would you respond to that?
Well, just because one legislation is not working, that doesn't mean you should need to create another one to make that one work. If the point of the autism Bill is to access support, then let's make sure that the first legislation is being implemented. I think that the new integrated autism services—they've got a role there, and I think that adults will be able to seek diagnosis there. There are so many new things in place. The ALN Bill is going to be addressing needs without, necessarily, any diagnosis—
But that won't help adults, will it?
No, but I think there'll be a knock-on effect over a period of time. We have young people who are in special schools who have statements at the moment who will have individual development plans who are 16, 17, 18, 19, up to 25. So, certainly, it will help transitions. A big focus of the ALN Bill is on transition. That needs to be the case, and I applaud that innovative approach, because that has been a huge difficulty for people with all kinds of conditions before. So I've got a lot of faith in it, and I also would be interested to see whether actually meeting the needs of children—there's no place on the paperwork of the IDPs where you write the diagnosis. That's not the important thing. The important thing is that everybody agrees what the plan is going to be for that person, how the support is going to look, who's going to provide that support, what's important for that person. That's the key thing. It's not what label they have, in a particular box. That's not there. I think over time we will see a reduction in seeking diagnoses because their needs will be being met. People come to us at the moment for a diagnosis because their needs are not being met, and that's—
The final word, Zoe.
I was just going to say, going back to what you said about the diagnosis enabling you to get the help and support as an adult, I think that's where we need to be looking. What is it that we're failing on? What part of this is not working? Let's look at that, rather than scrapping everything that we're trying to do already, and then we're going to look at something else, and that's not going to be perfect, either. Let's see what we've got. Where are we going wrong? Put the money into investing in what we've got and making a better job of what we've already got in place.
Excellent. I think that's an ideal time to stop. Well, we have to stop, anyway, because the clock has gone well and truly over. Can I thank you all very much indeed for comprehensive coverage of the situation, excellent analysis this morning and excellent evidence, and thank you also for the written evidence beforehand? You will be receiving a transcript of this debate so that you can make sure that you're happy with what you said. Not that you can violently change what you said to something completely different, but at least make sure that we've recorded it correctly. So, thank you very much indeed, and we'll move on to the next item. Thank you.
bod y pwyllgor yn penderfynu gwahardd y cyhoedd o'r cyfarfod ar gyfer eitemau 4 a 5 yn unol â Rheol Sefydlog 17.42(vi).
that the committee resolves to exclude the public from the meeting for items 4 and 5 in accordance with Standing Order 17.42(vi).
Cynigiwyd y cynnig.
Felly, o dan eitem 3, i'm cyd-Aelodau, cynnig rŵan o dan Reol Sefydlog 17.42 i benderfynu gwahardd y cyhoedd o'r cyfarfod ar gyfer yr eitem nesaf a'r eitem ar ôl hynny, sef eitemau 4 a 5. A ydy pawb yn cytuno? Diolch yn fawr.
Therefore, under item 3, for my fellow Members, a motion under Standing Order 17.42 to resolve to exclude the public from the meeting for the next item and the item following that, namely items 4 and 5. All agreed? Thank you very much.
Derbyniwyd y cynnig.
Daeth rhan gyhoeddus y cyfarfod i ben am 10:23.
The public part of the meeting ended at 10:23.
Ailymgynullodd y pwyllgor yn gyhoeddus am 14:06.
The committee reconvened in public at 14:06.
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 6 rŵan yn craffu ar Fil Awtistiaeth (Cymru). Rydym ni’n dal i graffu yng Nghyfnod 1, ac rydym ni wedi cyrraedd y sesiwn dystiolaeth gydag Ysgrifennydd y Cabinet dros Iechyd a Gwasanaethau Cymdeithasol. Felly, i’r perwyl yma, rydw i’n falch iawn i groesawu Vaughan Gething, Ysgrifennydd y Cabinet dros Iechyd a Gwasanaethau Cymdeithasol, i’r cyfarfod y prynhawn yma. Prynhawn da.
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 6 now and the scrutiny of the Autism (Wales) Bill. We’re still scrutinising under Stage 1, and we’ve reached the evidence session with the Cabinet Secretary for Health and Social Services. So, to that end, I’m very pleased to welcome Vaughan Gething, Cabinet Secretary for Health and Social Services, to the meeting this afternoon. Good afternoon.
A hefyd Matthew Jenkins, dirprwy gyfarwyddwr, partneriaethau a chydweithredu, Llywodraeth Cymru. Prynhawn da.
And also Matthew Jenkins, deputy director, partnerships and co-operation, Welsh Government. Good afternoon.
A hefyd Sarah Tyler, cyfreithiwr, Llywodraeth Cymru.
Rydych chi’n gwybod fel y mae’r pwyllgor iechyd yma’n rhedeg erbyn rŵan, ac mae gyda ni agenda lawn a nifer fawr o gwestiynau manwl, ynghyd â’r cwestiwn dyrys yma: a oes angen Bil awtistiaeth ai peidio? Ac felly yn dechrau’r cwestiynu mae Helen Mary Jones.
And also Sarah Tyler, lawyer, Welsh Government.
You know how this health committee runs, and we have a full agenda and a great number of detailed questions, as well as this serious question: do we need an autism Bill, or not? And so to start questions, Helen Mary Jones.
Prynhawn da. Good afternoon. The committee has heard a lot about the clear struggles that people with autism spectrum disorders and their families currently face in getting diagnoses and in accessing services. National Autistic Society Cymru and others argue that we've had a strategy for 10 years that hasn't delivered the change required. Indeed, we were taking evidence just before lunch, and one of the parents speaking to us had said that she'd been involved in the development of the strategy 10 years ago, she hadn't seen services improve for her child or support for her family, and when asked whether or not she thought legislation was necessary, she said, I'm afraid, Cabinet Secretary, that it was a matter of trust, that she'd lost faith in the Welsh Government to deliver the improvements that we all want to see through policy and that she'd come to the conclusion that the only way to drive the changes in services was statutory compulsion. And there’s been other evidence from other organisations, of course, that has said the same, but that particular family story stuck in my own head. So, how would you respond to that? We have had that long-standing strategy. I'm sure you hear as much from families, voluntary organisations and service users themselves about the continuing issues. If we don't legislate, what’s going to change?
Well, it’s a completely fair question, and I do know that the Member in charge of the Bill is motivated by a genuine desire to improve services to improve outcomes for people. But you still come back to whether legislation is the right answer, and I accept that a lot of this is about trust and about families who live a difficult life and often have to struggle their way through a system. So, starting from a strategy has been a useful way to gather ourselves together to say we recognise we have a problem and we want to do something about it. And the reason we are where we are now in terms of the Government point of view is we recognise we’ve made progress with the strategy, but we still need to do more. So, I wouldn't want any family to think that everything is fine now, and that’s the message from the Government. If we thought that, we wouldn't have developed the integrated autism service and we wouldn't have invested the new money we've put into that service, we wouldn't be consulting on a code of practice. So, the challenge is not whether we think more needs to be done, but what needs to be done. But, to be fair, in my own constituency case load, I see families coming to me with real challenges, and I never look any of them in the eye and say, 'Everything is fine, you are wrong.' I recognise, 'How can I help you with a system that we're trying to change and improve, and with your own lived experience being as it is?', and that very much drives what we're trying to do.
So, we know—and you'll have heard this, I'm sure, in evidence already—the integrated autism service is up and running in most parts of the country. The two remaining areas will be dealt with before the end of this financial year with the start of the service in both western bay and in west Wales. We recently, over the summer, started the integrated autism service in north Wales, and I'll be visiting next week.
So, there is continued interest from the Government, not just in saying we've spent money, not just in saying we have a strategy and a service, but, actually, what sort of difference they are making and, honestly, to learn, where the service doesn't work to meet the needs of people as is, what we do next. Legislation, though, and the form of legislation that you're being asked to pass—I don't think it meets its own test that it's likely to make a positive difference for people, and that, surely, is the test. I really do understand the campaigning element, and it is always part of the challenge of being in Government to recognise that people will and should ask you awkward questions, and point out where things don't work, and the test is whether you've got the right response in policy or in legislation. So, I've been honest with the Member in charge. I've been honest with the Constitutional and Legislative Affairs Committee that the Chair sits on as an ordinary member, not as the Chair, that I don't think that the Bill is necessary or is likely to make the difference that everyone in this room and across the Assembly want it to in improving services and outcomes for autistic people across the country.
I'll come to my next one, but a supplementary to this one, if I may. You referred to the integrated autism service that's not in place in west Wales. Dawn and I heard from families that some of the underspend from that is now being used to employ a private healthcare company to do some emergency diagnoses, because their waiting lists are so long. I think those families would ask you, Cabinet Secretary, if there is no legislation that they can use to bring sanctions on bodies that fail to provide the services that you expect them to and that they're entitled to—if there is no legislation in place, what are the sanctions? How can that be dealt with? Because you as a Government have made that investment. These families from Pembrokeshire were telling us very clearly this afternoon that they're not getting the diagnosis and they're not getting the service. So, what's the sanction?
We expect those services to improve when the integrated autism service starts in west Wales, and I expect that will start before the end of this financial year. If we look at sanctions, look at what we have and what the Bill proposes, actually, the Bill doesn't propose a range of neat and easy-to-apply sanctions. What we do have, though, is a scheme where we expect our public services to meet people's needs, and that's one of the big differences as a point of principle between the Bill as proposed, and the scheme we have. So, the additional learning needs Act is built around meeting a person's needs. The social services and well-being Act is built around meeting a person's needs and having a genuine population needs assessment. And the sanctions we have are about individual failings, where—I used to be a lawyer, so I'm not having a go at lawyers—the potential for legal action exists. But that's a poor remedy for a family, because it means that they've almost certainly had a long and difficult fight up to that point, and it means they're looking to spend their own resources.
Actually, if we look at our system-wide sanctions, and if you look at the action we're taking in social services provision, we have intervened. You have had warning notices. You have had interventions. Powys is a good example where we recognised that, left to itself, that service wouldn't continue. So, we use powers that exist in the current social services and well-being Act. And so, on an individual level, we have a range of procedures about how the complainant should be supported to try and resolve individual service issues. When they're more systemic issues, then we, of course, have opportunities not just on those individualised complaints, but on a system level within the Government to intervene and to support. You're getting into our broader system of inspection, regulation and action as well.
Okay. I remain, on the evidence of the families, a bit sceptical about all of that, but you mentioned in your answer just now that the social services and well-being Act ought to be sufficient to address some of these issues, and you've just mentioned it there in response. But we've heard evidence from the autism and spectrum disorders charities that, actually, many people with autism are struggling to access assessments under that legislation and that there may be issues that the assessment tools are not appropriate for all people with autism spectrum disorders, especially perhaps for women, who don't always present in the same way, and for higher functioning people, who still may need a lot of support in other areas of their lives. How would you respond to that—that the Act may just not be working for certain sections of people with autism?
Well, we're looking to improve what we have and what we deliver. That's why we're committed to consult on a code. But, actually, it's still about meeting that person's need, because you come back to: do you meet that person's need or do you need to define them with a condition, then to open the door to trying to address something? The Bill takes the condition-specific approach—so, you need to have a diagnosis, otherwise you don't get the service. That in itself will be problematic. That isn't just our view in the Government. I know that, in evidence you've heard—live and in writing—lots of people are saying, 'That's a problem with the way the Bill is set out.'
If you look at—whether it's the additional learning needs Act or the social services and well-being Act, you're talking about what needs does the person have and how do you meet those needs. That must be the right way to deliver, because you need to see that person in their context. If you're looking at a condition, you're missing all those other parts about that person. You mentioned that you do high-functioning people who may have some areas of need. Well, they may not want to go and get a label, a condition and a diagnosis, to then access an element of support. That would be something that I think all of us would be familiar with—about how do I get support, not tell me what is wrong with me. Because, again, that's the message it gives: what is wrong with me, not, 'This is who I am, and how can I be helped and supported with the needs that I have to make use of the ability I have?' I think that's part of the challenge in this as well. So, it's about how we make what we have work and work properly, and then acceptance that there will be time to take a step back and look at what we can do to improve it. And that is what we're doing with the code. That is what we've done with the integrated autism service, with real investment. And not to make a party point, but we know that we have less finance available, so a choice to invest in this area is a deliberate choice at the most difficult financial time in devolution. That's simple fact, but we're investing in this area, so there's no lack of understanding of the importance of this area or the impact that it has on people, their families and the communities they live in.
Okay. Moving on—Angela.
Yes. Thank you very much indeed. Can I just—? I just want to talk about the code for a little bit. Are you still on target to publish the consultation in November?
Yes, I still expect us to publish the consultation before the end of the next month. I'm also happy, if it helps, to write a summary of the areas that we're working on to the committee around that time, as well as you seeing the consultation when it's published. I'd like to be as open as possible because I recognise that some people don't trust that we are really going to try and have a serious attempt to look at where we are and how the code can help us to improve further services and people's learnt experience.
And why—? Can I ask why it's taking so long for this code to appear? How long have your team been working on it? Has it been a thought process within Government for some time? Is it a reaction to just wanting to improve the autism strategy or a reaction to this Bill?
No, it isn't just a reaction to this Bill, but also I've had a number of conversations with the Member in charge of the Bill over some time. We've been upfront with him about wanting to do some more and wanting to work with him. Now, I understand the choice he's made. So, we've been open in saying, 'Do you want to get involved with some of the work that we're doing and to be more involved in some of the early work on the code?' We shared some things with him. He's made a choice, ultimately, to say, 'Actually, I want to progress and put my time and energy and effort into developing the Bill', so he hasn't had the time to move into. That's an honest choice and I accept that that's the choice that has been made, but we have been generally open about it. If you want to know more detail on the time of the work, I'll have to ask Matthew to give you that detail, but this is a genuine attempt at system improvement.
Indeed, we'd be happy to provide a reconciliation between the areas that we're looking at for the code and the Bill as it stands. In fairly short order, we're on track to publish the consultation document before the end of November.
I think we'd like to see what you've been working on because I think it's really important in helping us to reach conclusions here. But also I'm just trying to square a little circle in my head about the evidence you gave to the Constitutional and Legislative Affairs Committee, when you basically said the code will—. Well, in fact, I'll quote you, and, in fact, it's probably easier. The code will do
'everything that the Bill would want to do'.
But then you also went on to say you didn't think the Bill would achieve its stated aims. So, what I'd like to understand is what it is about the stated aims of the Bill that you think the code—. Because you've said that the code will achieve everything the Bill will do, but then you're saying the Bill wouldn't have achieved anything anyway. So, does that mean the code won't achieve anything anyway? What have you done to the code to make it so different to that?
The stated aims of the Bill are to improve services and outcomes for autistic people across Wales. That's what the code will enable us to do. The scheme of the Bill I don't think will allow the Bill to do what it wants to do. I'm sure we'll get into some of the practical areas of that, but, look, can I take—? When do you complete your Stage 1 report? Because what I don't want to do is you say that you'll complete Stage 1 by a certain point in time and I write to you the day before and say, 'There you are; I gave it to you before the end of Stage 1.' Maybe we can talk afterwards, or even now, about time scales to make sure—
The seventh of December.
Well, we'll definitely have something for you before then so you can consider it properly before you finish Stage 1.
Before we move on, I've got Rhianon on this point. Rhianon.
Very swiftly on this particular issue, then, you've mentioned that you've offered the Bill sponsor some co-constructive ability around the statutory code, and you've mentioned reconciliation between the code and the Bill. Could you outline the areas of difference so that we can fully understand?
In terms of what we're going to put into the code, we're going to look at assessment and diagnosis, accessing care and support, staff training, planning and stakeholder engagement in service planning and delivery. They're the areas the code will cover. We will write to the committee with the work we've done up to date. We can happily provide a bit of a timeline, if you like, about when some of that work has started and who's been engaged up to date. But, in any event, you'll see when the consultation comes out—before you get to the end of Stage 1, you'll see what's proposed to go into that code as well. That's genuinely trying to be helpful so that people can see what we're offering. Rather than saying, 'Trust me, it will all be fine', you'll be able to see some of that in black and white, in a written form, as well.
Okay. Thank you.
You've been very clear about your position on this. So, you know, fair play there, so I'm not seeking to change your mind in 90 minutes—even I don't have that great a faith in my powers of persuasion. But what I am seeking to do is really understand and make sure we understand very clearly your position to this Bill, and also what other alternatives you explored when looking at the code versus the Bill. Can you tell me then, why would you not—? We're only here because, for 10 years, despite all the best intentions, we have a problem in delivering adequate support to people who have friends, relatives, children with autism. That's the whole reason why we're here. So, we know it's not working and we know that there have been lots of different initiatives over time, lots of policy imperatives, lots of incredibly good intentions, and actually a fair amount of money, as well, thrown at this issue, but it's still not improved. That's why we're here.
One of the securities about having an Act is, because you have a piece of legislation, there's a perception that you will have some power behind you, and, even if those services aren't there, even if everything else still isn't right, because you've got that power, you know what you can demand or you know what you can ask, you know what you can hope for and you know what you can challenge people on. So, I wanted to know, why you—or did you consider working with the Bill and strengthening it where it needs strengthening and improving it where it needs improving, and why you didn't use that as a vehicle, rather than saying that you wanted to go down the code route? Because one of the areas that I don't see, and haven't really heard from the code, or indeed the Bill, is the whole issue of remedies. We are very well aware that the social services and well-being Act, nice though it may be, is actually very light on remedies. So, it's things like that. So, I just wonder whether or not you went through the thought process of going, 'Well, look, we've got this Bill and we could actually flex it this way and that way', and get it to achieve and fill in some of the holes that are most definitely—definitely—in the social services and well-being Act?
I think Government has been very public that it was openly considering the case for legislation. So, it certainly wasn't an instinctive knee-jerk reaction against someone who was either in a different party or just somebody else who wants to introduce legislation. There's been long and serious engagement between officials in the Government and the Member in charge of the Bill. And we've honestly reached a point where we don't agree on what the right way to improve services is. So, we agree that we want to improve services and outcomes; we don't agree that the Bill is the right way forward.
And I go back to the way in which we're trying to improve services to meet people's needs. Because, otherwise, you have to diagnose people, you have to medicalise what their support needs are, and that's the wrong thing to do. We're trying to move to a much more social understanding of people's variety of needs and to understand how you build on the strengths people have, as opposed to just seeing a deficit in them and seeing a problem with them that you need to fix. And, actually, the social services and well-being Act is founded on that, the additional learning needs Act is in that place as well, and, actually, looking at in the broader field, value-based healthcare and prudent healthcare try to look at it in a different way. Now, if we go back to saying you want a condition-focused approach in legislation, you'll lose some of that, because, as the Bill sets out, you have to define people to get through the gate to services. And so there will be understandable pressure on actually people getting to and getting through that gate. Now, that's a problem, because you'll have to spend resource in that area and that resource won't then, necessarily, be spent on understanding that person's needs, the context in which they live their life, the choices they want to make, and how you meet and support those needs. And I really do think this would be a step backwards rather than, actually, moving forward about how do we meet the needs that you have to support you to make your choices.
So, there's a philosophical and a principle difference here that I think it really matters, as well as a practical point about how resources will get used, and the difficulties in having on the face of the Bill a definition. And, you know, I'm not at all comfortable with Welsh Ministers defining people, by range of a medicalised condition, who can get through the gate to access different services. I think that's rather unhelpful. And, again, it's about, 'Does legislation do that?' Well, you talked about that legislation gives people the perception they've got power. Actually, it's how that legislation is drafted—what it says and what it means—that gives people the ability to go back to having a legal remedy to talk about what their rights and entitlements are. So, it isn't just about, if you pass a Bill, then everything will be fine. Because, as we know, in other parts of the UK where they've either considered this legislation—. They didn't go forward with it in Scotland. In England, you can't draw a line between legislation and improvement in services. And, in Northern Ireland, you can see lots more demand coming into the system, lots more diagnosis coming in, but if you then ask people, 'Have outcomes improved? Is your lived experience better?', it's rather difficult to see that the Bill—the Act that they now have—has made that difference.
So, I wouldn't say that every single Bill that the Welsh Government has passed in the history of devolution is absolutely perfect and there'll never be a need to revise it or look at what we do, but we're using the powers we have—both the social services and well-being Act and the NHS Act—to try and make use of the powers that we have to move our services forward and do it in a way that's appropriate.
A lot of what you said I know we're going to talk about further as a committee, so I won't answer them, because other people will want to raise them and I know I'm going to want to chip in. But I would just remind, again, that we're here, because for 10 years all the different plans, Acts, policies, initiatives have not worked.
To be fair, we have seen improvements, and that's part of our challenge. If you look, objectively, at where we are, we seen improvements. We've seen improvement with the first strategy, we've seen improvement with the integrated autism service, where it exists, and what I'm doing, honestly, is recognising that—. We have an integrated autism service because a strategy wasn't the end of the line; it didn't mean we were at a point where we could say, 'Actually, everything is fine.' We don't have the integrated autism service in every part of the country. And, even when we do, there'll still be a need to look to make sure that the improvement that we've seen for lots of autistic people and their families is both real and sustained and that, those people who haven't seen an improvement, we take account of their experience to further improve what we have. So, I don't think it's fair to say there's no improvement or there hasn't been an improvement, but, in every field of health and social care, it's never a completed story, and this is an area where, as I've said in the start, I recognise—
I appreciate it's not a completed story, Cabinet Secretary, and I don't want to fall out with you this early on in the session, but—
I'm not trying to fall out.
—it's nowhere near—. It's nowhere near as good as you paint it, and one of the things that we talk about quite a lot in the Assembly is how we initiate and implement consistent and coherent policy throughout the whole of Wales. And it is so patchy, it is so difficult—this is why we are here. And I specifically do want to just draw us back to the code for a moment, because I'd be interested to understand who is creating the proposed code that we are then, or you are then, going to go out to consultation on. Have you engaged with all the third sector, the charities, have you engaged with parents, have you engaged with people with autism, or is this something that's been put together in a, sort of, very much an intellectual manner by people?
There's obviously intellectual rigour going behind the code, but, yes, we have engaged with a variety of people, and Matt will come in now. I just want to deal briefly: I'm not trying to say that there is a rosy picture of unalloyed improvement. I just want to recognise there has been real improvement, and there are families who—I don't know if you've heard from them—will say that they recognise that the new services have made a real difference. Our challenge is your point: how do we make sure that is more consistent across the country? Because I recognise, just as you do, there are families who don't get the sort of support that all of us would want them to.
In terms of engagement prior to consultation, yes, in respect of all the different groups that you outlined there: parents, carers, third sector organisations, professional groups. I think it's important to say that the consultation will be a very genuine consultation, and we'll have a document to discuss with people there, and we're very open to having those views shaped. The other thing I'd say is the evaluation that we've commissioned alongside the integrated autism service—we've expanded the scope of that, particularly to try and understand the issues behind diagnosis and the challenges there. So, this is very much a learning process, and we need to continue to evolve and to take that into account. So, we're absolutely open to engagement on this, as we must.
My final question on the code, then, if I may, Chair: you talk about diagnosis, which is everybody's, sort of, favourite word at the moment. Can I just go down to the next level and talk about assessment? Have you engaged with people to talk about the assessment, which, of course, is the—? One of the primary purposes of the Bill is to ensure that people have a statutory assessment within a given time frame. Have you talked to all the people who might be involved in that level of the Bill? Because I just want to make sure that this code that comes out actually really does reflect real life experiences of real people who are struggling at the moment, today, to get services here in Wales.
Yes, indeed. People and professionals—. I think you've had evidence from a range of royal colleges, including several that have said that the current ND pathway is worth getting into, in all respects. Individuals will have different views about that, and I'm aware that you've had testimony from individuals, but the royal colleges and the weight of that profession—if that means anything, we believe that the approach that we're taking reflects that and that professional view. But it's a consultation, so it's for further discussion by definition.
And I have heard what the professional view is, and I think if I was going to boil it down it would be, 'Actually, it's all about resources.' So, there's an element of, 'They're going to say that, aren't they?', because they can't do stuff without the resources, whereas at the other end, you have a family in crisis—and I use that word advisedly because pretty much every single one of them who comes to see me or whom I meet talks about the fact that at some point they have been in or they still are in crisis trying to get the support, and it's not just support for a child, it's actually the effect it then has on the entire family, the family breakdown, the ability to get employment moving forward. So, it's things like that that I would like and hope to see in the code about the employability, about how you're going to deal with somebody who might have autism but who's very high functioning, incredibly intelligent, but perhaps isn't able to deal with day-to-day life so well. I'll stop talking about the code.
And there you're talking about the whole person, meeting their needs; allowing them to make choices, which is exactly what we want to do, and I really do not think the scheme of the Bill will allow you to take that view in that way. So, in many ways, the way you finish is where we start from as well, about what we want to see in the service.
Okay. Some afternoon agility is required now, and the afternoon agility queen is Julie.
Oh, right. [Laughter.] Well, thank you very much. Can you tell us how you're bringing the referral pathways to both children and adult assessment services together? I think you said that you're exploring ways to bring the two services closer together, and also looking at reducing waiting times. So, could you give us some more detail on that?
Well, we are committing more resources to try to reduce times, and it's not just about resources, it's how we use them, of course. And that is the active conversation that we have, and, obviously, with families and with those professional groups. I'm not sure if you want more detail again, but it's about us talking with, and listening to, people who run the services and take part in them as well, at its most simple—.
Yes, and in terms of planning the continuity in the transition between childhood and adulthood, which is obviously a very crucial time in any service, what are you doing about that?
Well, that is one of the focuses that we have, to be fair, because we know that transition in any of our services, where a service continues, from children's-based services to adult services, is really difficult, and it's different for different people, which is part of what makes it difficult. If you think about, in any field, whether it's Tŷ Hafan and the work they do, and the transition to adult services, it's really difficult. It's the same in cancer services, and here as well, when there's a recognition that there needs to be a focus on there. You can expect to see the commentary around the code in that, but also that is very much part of the professional work that is going on.
Right. We have heard views, both those for and against the Bill, that a code is flexible and much easier to amend, or even revoke, rather than a Bill. And some argue that only a Bill can ensure permanency and consistency. That, actually, was said to us lunchtime from adults with ASD, who felt that only a Bill could provide that permanence and consistency.
I think it comes back to trust—whether or not people trust that there'll be somebody they can rely upon, but it's still got to be fit for purpose. We've had the principal discussion, but you need to look at the detail of what the Bill proposes. And the code does give you something you can rely upon, but it does mean that you can change it. It means that as your knowledge moves on, you can move on too and actually make sure that the next stage of improvement can be reflected in the code. So, we do need some agility, to borrow the Chair's phrase, but we also need to have something that people can actually rely on and refer to, if they do have challenges in engaging with their services.
I think the danger is that the case for legislation is made out because people are generally concerned about the fact that we're not providing services to meet the needs of every family with real need. The challenge comes when we then pass a piece of legislation that isn't fit for purpose and stops us from developing and improving the services that we all want to see improved because that will make the difference to people with lived experience. So, I understand the case that is made about legislation, about the force and about the consistency, but if you have enforced consistency in a scheme that doesn't work, we'll be spending resources poorly and not delivering improved outcomes. And the point about the consultation we're going through now—well, actually, we'll have more consultation on the code than the Bill is proposing for some of its measures, which is a strange way around.
Moving on swiftly. Can you clarify whether health bodies and local authorities will be under equal duties to act and adhere to the requirements under the code?
Yes, the code will be issued jointly, under the Social Services and Well-being (Wales Act) 2014, and will also make use of our powers under the National Health Service (Wales) Act 2006 and will issue the necessary directions to make sure the NHS comply with their duties as well.
So, when the Member in charge has said that local health boards will only be required to have regard to the guidance, that's not correct?
The direction—in practice, the NHS will comply with what the code sets out, and that's the point: in practice, are we going to deliver something? I don't want to get into a technical or semantic argument because I think that poorly serves the importance of the issue that we're dealing with and the people who rely upon us.
Right. And then finally—I mean, it's come through very clearly to us in the evidence we've had, and the people we've met, that we desperately need more support services, and we're talking about a code or a Bill. Why should a code deliver more support services?
The code will be—as I said, the code can actually be more descriptive in what we want to see happen than a Bill can be. A code should also reflect the reality of what we're already doing to improve services and what we expect to see happen on a more consistent basis across the country. The wording and the drafting of the Bill makes it much more difficult to do that. And it still goes back to the combination of what we're doing, both investing more resources, but actually looking at the way in which we deploy those resources—not just the figures and the money, but the way that people work across our system, and much of that is about cultural change as well. You can use legislation to change culture—organ donation is a good example where a cultural change has been driven in part by legislation—but this legislation seeks to have an imposed flow through the system that we don't think is appropriate and isn't going to help develop the positive cultural change we want to see to improve people's lived experience. We think a code can help to do that.
Okay. We've had a flurry of hands now. Angela and Dawn on supplementaries.
Can I just ask for clarification about this having regard to the guidance? Will you compel health boards to enact on the guidance? And Sarah, before you marshal the lawyerly arguments, I smell a foxhole, and we got it on the additional learning needs Bill, and the foxhole is there that people can jump down. I want to make sure that, if you do it as a code, then health boards do have to play ball and do have to provide that support and those services.
Well, as has already been pointed out, under the NHS (Wales) Act, a direction can be issued that would then create a duty on local health boards to comply with the code. There are mechanisms within that Act for enforcement and intervention orders to be made to ensure that local health boards comply with that direction.
So, will it be in the code, then? Will that power or that direction already be there, or will it be something that you'd look to do if you felt that people weren't carrying out the spirit of the code?
What I understand is that the plan is for the code to be issued under the two Acts, so the social services Act will deal with the social services functions and the relevant matters for local authorities, the NHS (Wales) Act will deal with local health boards, and direction will be made under that Act to ensure that they are under a duty to comply with it.
Is that helpful?
Thank you. Yes, it does.
That was the first part of my question. The second part was: what is the sanction if it doesn't happen?
There are sanctions under both Acts. Under the social services and well-being Act there are provisions for warning notices and for an intervention order to be made. You've already heard evidence about the warning notice that's been given to Powys, and how that force has been used. Under the NHS (Wales) Act there, again, is provision for intervention orders to be made and steps to be taken to ensure compliance with the direction.
Okay, thank you.
Okay, thank you. Moving on to waiting times now, and it's Lynne Neagle.
Thanks, Chair. Can I just ask for an update on how we're doing again the current target, which, as you know, is six months from referral to assessment?
The majority of people—and we've got working figures and management information, and we're still checking whether we've got consistent application across the country. As ever, before we start publishing official measures, I want to make sure that we're collecting the same information in the same way. But we have nearly two thirds of people meeting the 26-week standard. That's our current management information, and that's broadly improved over this year. So, again, we're seeing a focus on improvement and people getting in appropriately, but that still does show we have more to do. So, that goes back into the honesty I'm trying to give: that we're seeing improvement, but it isn't at the level at which we'd sit down and say everything is fine.
Okay. So, can you give us a bit more detail about that? So, is it a question of the target being broadly met in some health boards and not met at all in others, like it was when we looked at it in 'Mind over matter', where the Betsi figures were really bad, or is it just patchy across Wales?
No, we have got a couple of health boards that we're more concerned about than others. I'm happy to write to set out broadly who we think are at the better end of the pack, and where we think more action is required. Again, that's the honesty about the fact that we know that the service isn't being delivered in the same way with the same regularity. We actually think that where the integrated autism service has already been introduced for some time, it's actually helped through the whole system.
Okay. As you know, the Bill wants to introduce a standard of a three-month waiting time, which is based on the National Institute for Health and Care Excellence quality standard. Can you just tell us why you don't think we should be doing that in Wales, given that that is something that is recognised by NICE as appropriate and also has been adopted in England?
Because we want to be honest about what we think that will do to services. If you require that standard and you have it on the face of the Bill, then you will direct resources to meet that standard, and the resources we have across the service are not infinite. So, if we want to say this is an important enough choice to move resources in, you have to understand there's removal, also, from somewhere else. And that's part of the challenge about the Bill, because you're saying one condition matters more than others and so we will then direct resources to that area. And I think that inequity is not something that people want to see in improving services with and for autistic people. So, there's a very straightforward point, and it's about how we work towards improvement and to want to meet that standard, rather than saying, 'Let's just ignore it and not worry about it.' It's also, again, about how you meet someone's need, even as they're waiting. Even if they're waiting, whether it's for diagnosis or assessment, what are you doing to understand their needs and actually try and support people to make their own choices?
We've just got a supplementary from Rhianon at this point. We'll come back to you then.
In regard to the integrated autism services that are in operation—bearing in mind that one is only three months old, and there is not one, as has been articulated, in Pembrokeshire—what do you say to the parents who we spoke to earlier in our capacity on the committee, who say that the experiences that they have received from these new services have been actually lacking, to the extent that they are diagnosis-based only, they are not interventionist, they are not supporting? If we don't have legislation, what can be done to make it fit for purpose?
Well that's still about how we make sure that we deliver genuine improvement. People still come and complain, whether it's in the committee or in our local surgeries, if our services aren't adequately meeting their needs. And all of us see that in all of the services that we run for our constituents, including in areas where we know that we, the overwhelming majority of the time, meet the needs of people within our target times. It's still about recognising we have a larger challenge here to get to where we want to.
So I'd say to all of those people that there's a commitment from the Government, it's matched by resources, it's matched by wanting to improve the system to make sure that the current experience of people who don't have the experience that all of us would want for any of our constituents or our families is one that we are committed to improving. And you'll be able to see that in the honesty of answering questions about in which areas we have a bigger problem than others, where the autism service has been rolled out and what the impact of it has been, and whether that marries up with people's lived experience on the ground. So I can't tell you that you won't have people coming to you individually or coming to this committee with stories that are real, and that will reinforce for us the need for continual re-engagement in what we've done and what we still need to do.
Okay. Back to Lynne.
Just a final question from me: the integrated autism service practitioners expressed concern about their ability to meet the new adult targets, and they commented that the 26-week diagnostic timescale is aspirational for now. What's your response to that?
Well, again, that's because we know that we're not meeting the standard now, and we know that we'll need to improve our services to get close to meeting that. And that's part of the honesty. Sometimes, when you set targets, it's 'This is an operational expectation to measure quality', but it is actually to deliver improvement. This is about saying that we want to meet this target, and that then means we want to improve to get there. But it's still about meeting someone's need within that timescale. So, it's aspirational at this point, because it's not about to be met in the next month or two, and I'm not going to tell you, in this forum or in any other, that within a period of a few months we'll have met that target and will sustain the improvement, because that wouldn't be honest. But it is about having set a target for us to actually be able to meet that target, and we'll have to come back to you with not just where we are, but what rate of improvement we think we're going to make as we're changing our services as well, because part of this is about service transformation.
Okay. Angela, a supplementary at this point?
Yes. Just on the NICE guidelines, I heard your answer to Lynne, but to be honest with you, it's set my teeth slightly on edge, because I represent an area where we are often told that a service has been moved away or had something happen to it because of clinical excellence arguments. So here we have NICE saying that the clinical excellence is that you should have a 13-week assessment. I heard that you said, 'Well, you know, if we did that, then there might be other conditions that don't fall within that', but then I would expect NICE, as the purveyors of clinical excellence, to be the people who would then say, 'Well, actually, and we also need to have a target for this and a target for that.' So, it does seem to me that this is a coat that's put on and off according to the desire of the Government. If we do cleave to NICE, then we cleave to NICE, and they say 13 weeks.
I think there are two things here: the 13-week target is normally understood as being from when you're referred to when you start to have face-to-face contact, when the service starts, and our 26-week target is that. The NICE quality statement actually says
'referred for a diagnostic assessment by an autism team have the assessment started within 3 months of their referral.'
That actually isn't from the—. They're not measuring exactly the same things. What we've got is a standard that is consistent with paediatric waiting times in Wales. We're trying to actually have it in a way that is understood in the same way as our other targets as well. What I don't want is to have an argument, trying to say, 'Well, actually, NICE really means something else'; I'm trying to also be honest and say that if we had our current 26-week standard measured on the same basis reduced to 13 weeks, that would mean we'd have to move resources around the system, with the inevitable impact that would have.
Okay, some more agility is called for now, and Dawn, with her renowned agility, has got the next block on the integrated autism service.
Thank you, Chair. I've got a series of quite short questions, actually. So, we know that five out of the seven health board areas now have the service in place. Some have had them in place longer than others, so they will be at different stages in terms of assessing outcomes. We've got two health boards that haven't. I think you said earlier that Hywel Dda will be up and running by the end of the year.
Yes, Hywel Dda and Western Bay. They're the two areas that haven't currently got the integrated autism service up and running. They should be up and running by the end of this financial year.
Both by the end of this year.
So, by the end of March 2019.
Okay. So, my next question is about outcome measures and reporting arrangements. What will they be for the integrated service?
I'll briefly describe the thoroughgoing evaluation that we have in place, which we commissioned following the roll-out of that service across Wales. In contrast to the data section in the Bill, what we're trying to get a handle on is outcomes and distance travelled, in particular. The way that the Bill sets out data is around input measures, and it relates to individuals specifically rather than looking at the quality of services.
Will those evaluations be undertaken once the service has been running for a specific period of time, because we're at different stages in each area, aren't we?
Indeed. So, the evaluation's progressing, it's looking at the services that are in place now, but in others, as has been discussed on a number of occasions, we're not there with the full service. And I think one of the points that a number of people who've contributed have made is that we do need to give a little time for those arrangements to bed in. We're sort of making a judgment on something that isn't quite there yet. So, if there is a case for legislation down the line, that's a different question to being able to take a look at the improvements that we're trying to—
So, how long—
If it's helpful, we'll have some evaluation evidence available in the early part of the next calendar year in January and February, which should help to give an idea of the state of improvement, and also help us with the services that are being rolled out.
The IAS themselves, I believe, and the WLGA have published an annual report on the early progress, so there's qualitative evidence in the system. We need to build on the back of that and some of the metrics.
So, are you thinking that the services need to be up and running for about a year before you can get some decent evidence from them? What's your thinking on that?
That would be the minimum, in my view.
About a year. A year—
Sorry, Dawn, we've got a supplementary from Helen Mary and then we'll come back to you.
Just to take us back for a moment to the two areas where we haven't got the integrated autism service yet, can you give us some insight as to what explanation you've had from those two health board areas? Obviously, I've got a particular interest in the Hywel Dda one, but the other one is also relevant to the committee from a national perspective. So, why are those services not up and running? You state with some confidence, Cabinet Secretary, that you expect them to be by the end of March next year. I can certainly tell you that I've got constituents who are a bit sceptical about that, so what's the conversation been like about why this hasn't happened, and what, through that conversation, has encouraged you to be believe that it will?
Because we've had a staged roll out when the service was announced. If we'd tried to roll out the service on a national basis, we could have been robustly confident that it wouldn't have worked. So, we've done it by health board, around the country, to learn as we go. Now, whenever you do that, most people recognise that's the right way to do it, but, actually, you always then have a challenge about people at the end of the service, and it's the same in any service improvement— 111, that started being rolled out in ABMU and then went into Hywel Dda as a second stage, and they're the two health boards left at the end of this one. So, there's never an easy explanation for people who are in an area saying, 'Why haven't I had a service improvement, only that I'm going to get it?' But the challenge must be to make difficult choices about how we do something, how we do it sensibly and that the roll-out actually helps you to learn and improve the delivery of that service as you go along, rather than setting yourself an impossible task at the outset.
Okay. Back to Dawn.
Thank you. In those areas where they haven't got the service up and running yet, they will have already received the funding for it. What's your understanding of what they've been using those funds specifically for, in those areas where they don't yet have the integrated service?
This might be helpful, although not just about those areas where it's about to roll out, but where it's already happened and some of the preparatory work that got ready to get the service up and running.
Indeed. So, the IAS is supplementary, in addition to around the core services that already exist in those areas, seeking to be flexible in that regard. It's a process to be able to build up to that service. It's not that you have nothing and then, at some point, you can turn it all on. So, the resources are being used to be able to build up to the point where we're confident that we have the service specification in place, so that we can say that that service is now available in all its dimensions in that area. So, the resources are being fed in gradually to be able to get this to that point.
Okay. And can I ask you—? Because, again, the information that we've had presented to us was that the IAS seems to be more of a signposting service than a support service. Is that your understanding or would that be your expectation of what it should be?
That's not our understanding. I'm aware that you've had testimony from individuals that that's their lived experience. We absolutely want the evaluation to pick up the universal picture on that.
Okay, so it would be support as well as signposting.
Indeed, and I think you've had evidence from the IAS directly about the range of support that they offer currently and seek to offer.
Okay. My next question relates to funding. It's currently being funded through ICF and that's up until 2021. What are your long-term plans beyond 2021?
Well, depending on what role I'm in then, of course—[Laughter.] We want to learn where the service is working. If the service is working, we need to make sure that it's got a longer term footing for it. On the integrated care fund, we've just announced that that's coming forward again. So, the funding is secure. But, as with anything, we need to understand: is this a genuine service improvement? Does it succeed after the evaluation that we've just been discussing? And then, we need to confirm longer term choices, but the money itself is available. It's not like a one-off special grant or reserve funding that's going into it—it is generally from recurrent funds within the budget. So, in that sense, that should give people confidence; it's then about the service demonstrating the value that it's delivering with and for autistic people and their families.
I think that one of the witnesses who came to speak to us was actually questioning whether the integrated care fund was the appropriate vehicle for national models like funding an integrated autism service. So, that's something that you would look at as part of the evaluation, in terms of whether it would be ICF or a different type of funding or whether it would be an integral part of—
We could potentially move it to a different funding stream through regional partnership boards, because it's in a classic area where you have to have a partnership between health, local government and the third sector and the citizen. And so, where does that funding sit? If you move that funding into the local authorities, you'll have some people saying that you can't trust local authorities to spend that money on the services to be provided for them. If you move it into health, you'll have local government saying, 'We'll never see that money again.' So, actually, we've got to find enough space for this money to exist, where partners have to agree how to use it to deliver a service that they have a shared area of responsibility for.
And my final question, Cabinet Secretary, is in relation to the pathways—the access into support and diagnosis. We've heard concerns that, at the moment, the pathway is through education primarily and that there isn't access through GPs. GPs themselves have raised concerns about that, and Helen Mary and I met with parents this morning who were actually making a similar point, that there needs to be two pathways into both a diagnosis and support. Is that something you're looking to address?
We want to make sure that access to services is as appropriate as possible for where people go in the system. Part of our general challenge across health and care is not to expect people to navigate a complicated system—if you get the wrong answer, go back to 'Go' and you've got to start all over again—and how we help people to get to the right point. That obviously includes GPs, who lots of people go to at various points. We're thinking about other health and care professionals and about them getting to the right point and accessing care in the integrated service. So, I don't think it's just about what the professionals can do; this is actually about how you make sure that health and care professionals know how to access the service that will provide the best possible support and advice for that person.
And that would seem to make sense, but I think that what we were being told was that at the moment, the access route only seems to be through schools, whereas it would seem, when it's a health condition, that there should be—. Schools are obviously critically important because that's where children, in particular, are seen every day of the week, but if a parent takes a child to the GP, that should be an access route as well, shouldn't it?
Indeed. To flesh out the areas of thinking in terms of the code, which we discussed earlier, this was one thing that we were actively looking at with the discussions within Government as to whether the code could place requirements on local authorities and health boards to establish a primary care pathway in that regard. So, that's actively under consideration as something we would want to put into the consultation work.
And, of course, as we discussed earlier, this was introduced under the NHS Act as well, we've got to grow up our health boards to deal with it.
Thank you, Dawn. Moving on, Angela's got the next section.
Can I just ask a couple of questions on the integrated autism service as well, though? I was interested to know, just rowing back a step, on the autism strategy and action plan, did the Welsh Local Government Association play a significant part in helping to develop them, or were they involved at all?
Because I'm curious to know why you chose to use the WLGA as your vehicle for delivering the integrated autism service.
When you think about lots of the services that are provided through it, lots are provided on a local government basis. So, it made sense to have them as a national body. That's partly wanting to have consistency as we're going through and delivering it. I think they're an appropriate vehicle to use. We would have had to create something different, which I don't think would have made sense. It's a practical choice and, to be fair, we think they've done a good job in delivering a new service with lots of challenge around it.
It's just that they weren't hugely convincing in their evidence about how much involvement they'd had prior to then setting up the autism service. That's why I was interested to try and understand that a little bit better.
When we held our evidence session earlier on today with some of the parents, one of the things that did surprise me, which I hadn't quite hoisted in, was that the integrated autism service seems to be different in different areas. Do you have any plans to try to achieve that consistency? I think I'm right in saying, and I think I was with Rhianon and Lynne, that there was one area where you could only access it if you were an adult, you couldn't as a child, and then—
They all gave us a different picture and it was—
Yes, it was quite confusing and different, wasn't it? So, some areas you could get to it and other areas you couldn't, and if you'd already had a diagnosis, you couldn't access it at all. So, there was no consistency, and what the parents were saying to us was that they'd been told that it was rolled out in area one, and then there were lessons learnt, so it was slightly different in area two, more lessons learnt so it was slightly different in area three. But, actually, that's a really confusing picture for service users and it just adds to their frustration. So, I just wonder what your view was on that and what actions you might be taking to mitigate that.
We'll expect to learn from the evaluation about what's been rolled out and what the impact is. I'm most interested in understanding does the service meet the needs of people. If that means that it's organised in a slightly different way then I'd want to understand is there a proper evidence base behind that. Does that really mean that local circumstances have meant that you need to organise it differently to meet people's needs? I can tolerate that. As much as I regularly say I want pace and I want consistency across the country, I don't want to impose a straitjacket on services, because that could well get into the space of ignoring the reality of how local provision works, which needs to work to meet local needs. So, yes, we need to learn, and if there are areas of improvement, to change and to challenge how the service is being delivered in other parts of the country, well, yes, I do expect that to happen.
You're absolutely right, it is all about change, isn't it, and getting better outcomes, but when a parent is told, 'You cannot access the integrated autism service because you've already been to CAMHS', and we all know the pressures on CAMHS, then actually that parent is then suddenly left again with no support. So, ergo, nothing changes and there's no improvement.
I would not say that if you have been to CAMHS that means you're not allowed to go to the integrated autism service. So, again, that's about understanding what doesn't work and why that's come up. Each of these inquiries that you go through, we learn things from stories that people tell that we don't think should happen, and integration hasn't been brought to it, so it allows us to do something about some of those problems, even on a smaller level. So, even if the Bill isn't passed, I'm sure there are opportunities to learn and improve the services we provide.
I just wanted to talk a little bit about two main thrusts of the Government argument. One is that if we have an autism Bill, then other conditions will be disadvantaged. Are you able to provide evidence of where that has happened in areas or in countries where they do have an autism Bill?
Well, if you look at Northern Ireland, I think they've seen significant additional demand go into the system and not only can you not plot a significant increase in improvement in outcomes, but you then need to—. You can, if you want, go and look at what's happened to other services, but there's an understandable logic—you have a finite amount of resource and if you promote an area of activity within the neurodevelopmental pathway, you will move resources there to meet those needs on the front of a Bill and primary legislation. It's not just the Government's argument. As I know you'll have heard, I don't know if you had it today or otherwise, but we did send you a note to underline where the Government has made assertions in our written evidence, where that's supported by other people in their evidence—both individuals and practitioners and professional groups as well.
It is the evidence I'm after, because, actually, when we talk to people, they all talk about it as if it's a fact, and then you say, 'Well, where's the evidence?', and it then starts being rowed back to, 'Well, there's a risk.' There's a massive difference between risk and evidence, and with any risk, you do a risk analysis, don't you? And if you weighed it up and you said to me, 'Do you know what? I looked at the risk, I think there is a big enough risk for me not to do it', I could live with that; that's honest. People have sat here before you and said, 'Well, we've got the evidence.' Then we ask them for the evidence and then they can't produce it. That, actually, just makes me think, 'Hang on a minute, this is not transparent.' So, I appreciate the risk—