Y Pwyllgor Cyfrifon Cyhoeddus - Y Bumed Senedd

Public Accounts Committee - Fifth Senedd


Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Adam Price AC
Jenny Rathbone AC
Mohammad Asghar AC
Neil Hamilton AC
Nick Ramsay AC Cadeirydd y Pwyllgor
Committee Chair
Rhianon Passmore AC
Vikki Howells AC

Y rhai eraill a oedd yn bresennol

Others in Attendance

Adrian Crompton Archwilydd Cyffredinol Cymru
Auditor General for Wales
Anne Beegan Swyddfa Archwilio Cymru
Wales Audit Office
Ansley Workman Cyfarwyddwr RNIB Cymru
Director, RNIB Cymru
Elin Edwards Rheolwr Materion Allanol RNIB Cymru
External Affairs Manager, RNIB Cymru
Gareth Davies Arweinydd Ymgysylltu â Rhanddeiliaid ar gyfer Iechyd Llygaid a Chynrychiolwr Cleifion, RNIB
Stakeholder Engagement Lead for Eye Health and Patient Representative, RNIB

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Claire Griffiths Dirprwy Glerc
Deputy Clerk
Katie Wyatt Cynghorydd Cyfreithiol
Legal Adviser
Meriel Singleton Ail Glerc
Second Clerk

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 13:33.

The meeting began at 13:33.

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

Welcome to this afternoon's Public Accounts Committee. Headsets are available as usual for translation and sound amplification. Turn any phones onto silent and, in an emergency, follow the ushers. We've received no apologies today and no substitutions. Do Members have any declarations of interest they'd like to make? No. 

2. Papurau i'w nodi
2. Papers to note

Okay, item 2 and, first of all, a couple of papers to note. First of all, a letter from the Chair of the Culture, Welsh Language and Communications Committee suggesting that the Permanent Secretary be invited to give evidence to—. I wrote to that committee, I should say, suggesting that the Permanent Secretary be invited to give evidence as part of its inquiry into supporting and promoting the Welsh language, following the failure of the Welsh Government to publish in English and Welsh as part of the accounts. I'm pleased to say that that committee will take evidence from the Permanent Secretary. Happy to note that letter? Yes. 

Secondly, Mick Antoniw, Chair of the Constitutional and Legislative Affairs Committee, has written to all committee Chairs drawing our attention to the inter-institutional relations agreement reached on 2 January between the National Assembly and the Welsh Government. It's primarily concerned with scrutiny of Ministers and joint working arrangements, and the clerks will refer to it as and when required as part of the committee's business. That's noted.

And, following our evidence session on 11 March, Cardiff and Vale University Health Board have submitted additional information regarding the management of out-patient appointments, so we need to note that. All right.

3. Rheoli apwyntiadau cleifion allanol ar draws Cymru: Sesiwn Dystiolaeth gyda Sefydliad Cenedlaethol Brenhinol Pobl Ddall (RNIB) Cymru
3. Management of follow up outpatients across Wales: Evidence Session with Royal National Institute for the Blind (RNIB) Cymru

Item 3—moving swiftly on—the management of follow-up outpatients across Wales. Today, we have an evidence session with the Royal National Institute for the Blind Cymru. Can I thank you, our witnesses, for being with us today? Would you like to give your names and positions for the Record of Proceedings?

I'll start. I'm Elin Haf Edwards, external affairs manager for RNIB Cymru.

I'm Ansley Workman, director of RNIB Cymru.

I'm Gareth Davies, I'm stakeholder engagement lead for RNIB and also a patient.

Great, thank you. We've got a number of questions for you, so I'll kick off with the first couple. Your 2014 report estimated that at least 48 people a year were coming to harm, losing their sight because of delays in their follow-up care. More than four years on and with the number of patients delayed increasing, can we assume that the situation is likely to have got worse, not better? And have you updated the estimate at all?

The latest figures we have are from the auditor's report and that clearly showed that there was nearly a fifth increase in the number of people waiting. And also, it evidenced that 71 per cent of people were delayed twice as long. So, these are the kind of most recent figures. A lot of the figures that we're waiting for from Welsh Government would give much more up-to-date detail on that.

More anecdotally as well, we still hear from patients very much waiting to be seen. One of the issues that we have is that patients are often very reluctant to go public or to make a complaint, as they're scared it's going to affect their treatment. We're particularly concerned, as well, that, with the volume of cancelled and delayed appointments going up, patients aren't then made aware of the risk this places their particular sight conditions under too.

How does the growth in recorded delays align with the feedback that you've received from patients and stakeholders?

I think very similar to what Elin was saying there, we hear a lot of anecdotal evidence. Partly, that may be because we're based in Cardiff and Cardiff Institute for the Blind is co-located in our building. So, that has got a big throughput of people coming through there. Also, most of the people who come through there are older with age-related sight conditions, but we often have a lot of distressed people coming into the building, and you would expect that as well in terms of Cardiff and Vale University Health Board having one of the bigger ophthalmology departments. When we talk to people and say what we can do to help to support them, to maybe challenge and get appointments, a lot of them say that they don't want to because they're actually scared that it may affect their treatment. And so, they're not confident about what they see as kicking up a fuss. So, lots of people who are very concerned will not do that.

Cardiff Institute for the Blind has got a number of paid staff who work there and we often have them coming to speak to us to say that they're concerned because they have actually seen the difference in someone's sight in terms of their sight deteriorating because of the cancelled and delayed appointments.

Certainly, the patient stories that you have to hand outline the actual impact that those delayed appointments do have upon people, not just their eye conditions, but also their mental health and their general well-being in terms of higher risk of falls in the home or when out and about. And also, RNIB's eyecare liaison officers, ECLOs, who work in eye clinics across Wales deal with patients who've recently been registered blind and often hear examples of people going blind whilst waiting for treatment. And I think, in terms of the figures that we've talked about in terms of people losing their sight in Wales whilst waiting for treatment, for me, it's nothing short of a safeguarding scandal, and we are all aware of it and we're all, therefore, complicit in that—not wanting to be, but we know it's happening. So, today, this week, someone will lose their sight whilst waiting for treatment in Wales.

Is it fair to say that there's a postcode lottery—to use the old expression—across Wales?

So, are there health boards that are leading the way and others that are clearly lagging behind?

Yes. I mean, obviously, you had evidence from Aneurin Bevan, which really seems to have grasped the nettle and has a very clear transformation plan, and they've got timelines and they've got targets and they're making themselves accountable and accepting that accountability. What we see across Wales is lots of good practice, but pockets of it, and that is not shared—that learning is not shared across Wales. So, I can give an example of that. In Abertawe Bro Morgannwg, they've been working to have an accredited upskilling programme in terms of some of the healthcare staff. That has now got through the accreditation procedure; it's all there and people have been upskilled. When we go around health boards in Wales and have talked to quite senior members of staff and some of the chief execs and chairs, they're not aware of it—many of them are not aware of it. So, that's fantastic in practice. We know that with the ophthalmic diagnostic and treatment centres in the community—particularly Aneurin Bevan, but also in all sorts of pockets throughout the whole of Wales—they're working, and working really well. But, again, it's not practice that is being taken at a national strategic level and implemented.

Can I just give you another quick example? That would be the cataracts pathway, and that is about, once people have been seen for their surgery, they would be discharged through the community, in community settings. And at some point last year—I don't know what the up-to-date figures are—they varied, from one health board only discharging 13 per cent that way, to another health board 100 per cent. And every one of these people in that 13 per cent who is not being discharged, that is freeing up time—if we discharge them through that pathway—for the ophthalmologist to use their clinical expertise for the people who most need it.


It was just something very early on in what you said. You mentioned first of all a report—I didn't catch the name of that report—in terms of the data that you quoted. But it was just a point, really, with regard to—perhaps you could extrapolate—you mentioned that there are many who appear, or perceive to feel, that they cannot complain. And, obviously, you are in a central hub, as you stated, and you are co-located, so you will get that. But with regard to that as a particular issue, do you see that that is more prevalent in terms of this particular—in terms of ophthalmology? And if so, is there any awareness campaign around that that you're aware of, because that's concerning?

As far as I'm aware, there's not an awareness campaign around that. The problem that patients find—and it's not just patients, but it's often their carers, their family members, those who look after them, friends—or face is actually getting through to anybody to make a complaint. It seems as if the whole system of complaints within the NHS is set up for people not to be able to get through. In terms of calls that you make if your appointment has been cancelled, you will get literally a very short-shrifted service. Basically, from a patient's perspective—and it's a term that's used a lot—you are hitting a brick wall, so people therefore give up. We're also talking a lot around—not exclusively, but generally speaking—older members of the community, who still see it as not to complain about the NHS, so therefore they don't. And they're also scared about getting a black mark against their names, in terms of complaining about a consultant as well. Elin.

Yes, just to pick up, the report that you mentioned as well, so the figures that Ansley referred to are ones directly lifted from the auditor general's report. The other thing to point out as well is that, where ophthalmology differs from a lot of other disciplines, of course—we have a number of patients who are out-patients for life, because we know that sight conditions can be treated and managed with regular and timely treatment. In terms of raising a complaint, we often canvass opinion from blind and partially sighted people—essentially, it's not very easy. In addition to what Gareth says as well, the systems aren't always accessible for people with sight loss, which also needs to be considered too.

So, my point would be: do you feel that your cohort of patient is actually more disadvantaged in this regard of being able to complain?

I think that's fair to say.

And also I'd add to that that many of the systems are technology-dependent—you can e-mail complaints, you can access the systems. So, if we're talking about mainly older people, who may not have internet or digital skills, but compounded with the fact that you have got sight loss, many people would not be able to access complaints that way. We had somebody in the last few months who has only got 1 per cent vision, who had been cancelled four or five times in a row. She had come in in the morning very distressed, because her appointment that day had been cancelled. So, we supported her to ring to get another appointment, and she rang the concerns team, and they came back, and they basically said, 'You're just going to have to wait for your next appointment', which for somebody with 1 per cent vision, who is very scared, very anxious—waiting for the next appointment is just not acceptable.

I'm glad you mentioned cancellations. There are two things in your paper I wanted to ask you about, before bringing other Members. First of all, there has been a 5.5 per cent increase in the number of cancellations and postponements, so just under 101,000 cancellations. What are the causes of those cancellations and postponements?

Again, if I can just speak from a patient's perspective—we don't know. You'll get a letter, very close to that date that you are expecting your appointment, and it will state 'for unforeseen circumstances', and then, obviously, as I referred to earlier, it's very hard to get through to anybody to find out what that actually means. We don't know what that means.


What we would suspect, though, which is included in our paper, is that because the system—it's not just not in alignment, it's not to do with just the capacity to meet the demand, it's because the system needs a complete overhaul. That is what's causing the problems. If, for example, we had any healthcare person acting to the top of their skill set and being trained to do that, we'd reduce ophthalmology consultants' capacity to deal with the more serious cases. If more people were being seen to in the community by optometrists, if the EPR, the electronic patient record, was in place and functioning properly—these are things that are the root causes that are stopping people getting their appointments on time.

If I give you an example. We had a patient come in—this is at some point last year—with a letter that they'd received. The first letter in the envelope said, 'Your ophthalmology appointment is on X date.' In the same envelope was a letter cancelling that appointment. We believe that that is because health boards want to meet the recommended treatment times, the targets for that. So, they've given the appointment, and then they can say, 'Well, we've met that target', and then—

Absolutely. And in another letter in the same envelope, that's taken away. [Inaudible.] Yes, it's appalling, but they're meeting the RTT, and we're not addressing the clinical—

So, they know at the point they're giving the appointment that it's going to be cancelled. They're just doing it to—

Yes, the same day—literally in the same envelope.

Okay. What about new treatments? Well, first of all, is that happening across all health boards?

That's the only time we've seen somebody come in with two letters in the same envelope, but we have people come to us and they've been cancelled four, five, six—

Literally in the same envelope.

To save postage—effective and efficient.

Okay. Secondly—thanks for your paper—you referred to new treatments as one of several factors that have been adding to rising demands. There are a lot more treatments available than there used to be. Are they accessible across the whole of Wales, or, again, is there a postcode lottery in terms of what modern treatments you can access?

We mentioned this in our paper just to contextualise the situation in part. More broadly, we are in a time now where there are more treatments available and we hope that that will increase over the coming years.

Thank you, Chair. Good afternoon to you all. My question relates to performance and accountability. Your paper welcomed the new measure of 95 per cent of risk 1 patients being seen by their target date or within 25 per cent in excess of the date. What impact do you expect the new measure to have and what challenges might health boards face to meet the expected level of performance?

RNIB Cymru has been heavily involved with supporting the creation of these new measures. As we've already touched on, referral-to-treatment time very much doesn't address the clinical need, and what we know with some eye conditions is they need to be seen more regularly in order to prevent any further deterioration in sight loss. We know that health boards are experiencing huge pressures. They've been shadow reporting since September and we'll expect the first full reports out in April. That's crucial for us, really, to be able to get a proper assessment of the situation. At the moment, we don't know how many people are waiting beyond their target date, and what that will actually give us is tangible evidence, which is important obviously for scrutiny and for yourselves as Assembly Members. Making changes at pace I think will be difficult for that, really getting those measures to embed. What we are predicted to see, really, is a huge number of those R1 top-priority, at-risk patients, because we know at the moment there are so many people waiting over their target dates, there'll be huge numbers of people that need to be seen at that R1 level before that starts to bottom out. 

If I may say as well, I think it's also a credit to Wales and the Welsh NHS that they've actually taken this massive leap in terms of transforming the service whereby now people are being treated on their clinical need, so treating those people who are most at risk of going blind. This isn't happening anywhere else in the UK; other nations are looking at Wales to see how this is implemented. I think it is a credit to those within ophthalmology and the NHS to have actually taken this bold step to put patients and clinical need first, rather than the arbitrary waiting times. Although it will be, I imagine, very, very difficult over the next couple of years, the fact that we've actually made that seismic change to this approach is something to be applauded.


It's nice to know that Wales is ahead of many. Your paper also emphasised the importance of prioritising the new performance measures over referral-to-treatment times. How confident are you that NHS Wales can shift its focus and resources quickly enough?

Unfortunately, we don't think that that pace of change will happen fast enough, and there's a number of reasons for that. What has been hailed for a long time is that once we get this new electronic patient record, it'll all be wonderful. It won't. It will alleviate hugely some of the issues, but if I just drop in an absolutely appalling but true story here, in terms of some of the data, we know of hospitals where, literally, the patient records are pushed around. They're all in supermarket trolleys being pushed around the hospital. That is happening today, so how can they even begin to contemplate making sure that everybody's seen in time?

So, the EPR will be a huge step forward, and being able to make that link between optometry and community to ophthalmology. But it's been mentioned a few times—. We certainly see it in Cardiff and Vale's evidence, but it's been mentioned a few times, that there's a huge cultural barrier in terms of moving away from some of the old models to the new models. It has been mentioned by the health Minister and recognised in official letters to the cross-party group—it certainly was recognised in Cardiff and Vale. At a recent meeting I had with the health board, they were saying that they found it incredibly difficult to have the consultants to trust that in optometry in the community they could do as good a job. 

Just to add to that as well, it's taken a huge amount of time to get us to where we are now, in terms of implementing those measures, so it has been a bit of a slog. The support and the profile of Welsh Government have really helped—the additional investment that they announced recently as well—but we just don't believe that it's as much of a priority as it could be in health boards. At the moment, there aren't any levers for ensuring that they deliver as well.

Thank you. The new performance measure makes clear that 'risk 1' patients are those at risk of irreversible harm or a significant adverse outcome if their target date is missed. But, the measure allows for the target date to be missed by 25 per cent. Are you satisfied that the measure is sufficiently stretching?

The whole ethos behind the new measures is that you are seen within a clinically driven time. So, we know that it's going to take time for these systems to embed. We recognise that this is a huge system change you've got to make, so we understand why you would give some kind of leeway. But, actually, that 25 per cent leeway has to be patient specific, because if you're due an injection next week and it's delayed by 25 per cent, is that going to irreversibly harm your sight? So, our view on that would be that you have to concentrate on the actual risk to people's eye health.

It is absolutely going to stretch health boards as well. We know that they're going through the process of cleansing a lot of their data at the moment, and a lot of duplicates are coming up. I know of one particular health board that had a record of a patient not being seen since 2003. Worryingly, they couldn't tell us the status of that patient. So, yes, that's why the number of R1 top priorities is going to be exceptionally high, or we expect them to be, when the first reports come out, but that's because they've been waiting so long to be seen.

Thank you. Aneurin Bevan health board told us that they were currently only at 62 per cent performance against the new measures. Are you aware of where other health boards are currently? Where do you rank them?

We don't have that data at the moment.

You haven't got any data. You just mentioned earlier that there's the old model and the new model, so there must be some transition period and some sort of other area that you'll probably be facing. So, were you prepared for those, or is the adaptability just there? 

I think what we've seen is the fact that—. We have not seen any evidence that there is robust short, medium and long-term planning to address this issue. It seems to be a bit piecemeal. We would really like to see each health board having a very detailed plan with accountability and with timelines to look at this. We know that there may still be, at the end of this process of looking at it, a capacity issue, but what we're not seeing anywhere is that we know what that is. So, we should be able to, or our health boards should be able to say, 'Okay, if we deal with our cataracts in this way, if we have ophthalmic diagnostic and treatment centres, if we put a number of things in place, if we upskill our workforce, that might take x number of time.' So, at the end of that, you might be able to say, 'Actually, what we still need is x, y and z.' But we're not seeing that long-term planning or accountability.


All right. My final question to you: your paper calls for enhanced accountability, what should that look like in your view? For example, what changes would you like to see in the way health boards are held to account by the Welsh Government to ensure effective delivery?

I think, we absolutely support the auditor general's report, which made numerous recommendations there, particularly strengthening the ophthalmic planned care board in terms of what they are tasked to do in terms of accountability. We certainly see that in local health boards themselves, there needs to be—we don't know who that is; that will up to Welsh Government and health boards to decide who is going to be the accountable person within that health board. It has been suggested medical directors, in terms of driving change. But we're not seeing that accountability. Certainly, there's accountability from Welsh Government, but Welsh Government, we know, in terms of their staff, are absolutely 100 per cent behind these measures and, really, they're going to health boards, they're talking to individual health boards, they're talking to Andrew Goodall and Simon Dean, and they're doing what they can, but the blockage is still there. 

If I can just add as well, what we've seen over the last five years, and we continue to see, is that where these targets are missed, nothing happens. What does happen is people continue to go blind while they wait. There is no accountability. That's the reality of the situation. Within health boards, pan Wales, there is no accountability. 

It makes you question what the point is of targets if they are going to be missed, and would it be better for the Welsh Government to adopt another approach. 

One of the questions was about how they're ranked. We would like to see some sort of ranking, colour-coded system about those health boards that are performing and those that aren't performing, because patients need to know what's in front of them, what they expect. And that would be some way of putting them under more visual scrutiny. Again, visual is everything in sight loss. So, nothing happens. So, what we really do need is some serious accountability at the highest levels and a real demonstration of leadership within health boards across Wales.

I fully understand what you're saying. What does that accountability look like? And you talked about levers earlier on, in terms of this accountability. What would that look like in every health board? You've mentioned, in a sense, there's this missing middle.

And, actually, scrutiny of the new measures is going to be really crucial for that as well. And it's worth drawing out as well the recommendations, not only in the auditor general's report—it feels like this is in long line of several reports that make similar sorts of recommendations for how we can be holding health boards to more account as well.

So, to explain to me as a non-clinician, and possibly others, you've talked about the levers that you would be able to use in order to make health boards more accountable—

I would that that we don't really know the levers. We've tried our hardest, we've engaged with the Minister, we've engaged with chief executives of health boards, we've engaged with health boards on a local level, we engage with Welsh Government. And within that, nobody is saying, 'This is what we need to do', and in terms of accountability, what the lever would be.

There is a cultural issue within ophthalmology around consultants displaying what's been described as a self-employed attitude. There needs to be some real basic performance management of key individuals within eye clinics—those that hold the waiting lists. For me, the very nuts and bolts around accountability is performance managing those consultants, to bring them on board. Because, again, there's a lot of resistance to all these changes, be it the outcome-focused measures, be it the electronic patient record. There is resistance within some groups, not all groups of consultants across Wales—some are really on board and really working hard to get these through—but there is a spine of consultants who are resistant to change. And, for me, to answer your question directly, the performance management of those individuals is critical.


I just wondered if you'd done any work on—. I agree with what both of you were saying about the need for cultural change. Have you done any work on—or are you aware that the health boards have done any work on—ensuring that consultant ophthalmologists are working to the NHS contract? I believe they have to work nine tenths of their time in the NHS. 

Okay. Because it seems to me there could be a very unfortunate relationship between the length of waiting times and the profitability of private clinical work. But, anyway, that's obviously for another day. But in any other business, a member of staff who didn't carry out the duties that were described in the contract would be dealt with and it would be a disciplinary matter. So, we clearly have a serious problem here.

I wonder if you could just tell us how easy or difficult it is for people like those in the case study you've provided, how possible it is for them to complain and get redress in the case of your case study, at least for the loss of one eye and possibly the risk to the other eye. Because money talks as well, you know. Health boards that have to pay out may start to focus on doing something different to stop this happening. So, I just wonder if you could tell us whether the people you see, who obviously have a problem, are able to get redress. They can't get their sight back, but—.

As a national organisation, RNIB does sometimes take legal challenges on behalf of or supporting patients on any issue, but what we find is people are just too scared to actually take that legal step because they think, as Elin said earlier, you're in the system for life, and they're very scared that if they're receiving a bad service already that that will harm any future service they get. So, for us, even as an organisation on the ground, to get case studies can be incredibly difficult because people are happy to tell us but they do not want that public and are not willing to be on the media, to take anything to the health board. 

Okay. Have you had any contact with the Public Services Ombudsman for Wales? Sorry, Gareth, I interrupted you. 

Elin, do you want to—?

On the public services ombudsman, yes, that is something we did try to pursue at one point, but we needed to exhaust the health board complaints procedure first, because that's one of the levels that need to be exhausted first. So, that's not an example that we've been able to go to as yet, but we do encourage people to look into it as well. 

And if I may just add—sorry to interrupt. I think you also have to put into context where people who have recently been registered blind are psychologically at that time. It's okay for us to sit here and say, 'Well, why don't you complain?' or 'Why don't you just keep going?' At that time—and I'm speaking from personal experience—your life is turned upside-down. I was registered blind five years ago with my notes having been lost for over two and a half years, in which period my eyesight, my condition, deteriorated. It couldn't have been saved and there's no treatment for the condition I have—only to put that in. However, I was informed of my sight loss, having had an appointment, by letter rather than being sat down and being talked through it. So, the impact that had on my mental health, the impact that had on my young family at the time, my fear of losing my job and my mortgage. So, we have to bear that in mind. 

Yes, I was informed by letter. 

No, it came along with the council tax bill and, 'Oh, by the way, you're now registered blind.' So, yes, that was a fact. So, it's difficult for people to be like that. You need resilience. I gave up trying to get redress, and I would class myself as a very resilient person. But, at the time, I wasn't in the right place. 

Well, I understand all that, and that is why it is the role of the public services ombudsman to do their own inquiries without having to need an individual to complain. They can do their own inquiries with the passing of the Public Services Ombudsman (Wales) Bill. 

Something else probably to mention here—and I'll just mention it briefly—the conversations I'd had with senior Welsh Government officials around ophthalmology were about the number of 'did not attends' to appointments. And it's a very interesting thing that's being looked into at the moment. Because the general research is saying that, often, if, particularly with a health thing, your appointment's cancelled, because we have a trust in the medical service, we think 'It must be okay. They wouldn't cancel an appointment if it was going to cause me any damage' or 'The NHS, of course, will look after you.' So, there is some work going on, I know, looking into that. Because, as I say, if your appointment's cancelled, 'It can be that bad', until it's cancelled again and again and again, and then people maybe start to see the impact themselves on their sight loss.


Okay. All very disturbing stuff. Could you just tell us a little bit about how other services respond to the situation where somebody loses their sight and is clearly going to need housing adaptations or disabled parking badges for other members of the family or whatever? Could you just tell us how these services interact once somebody gets a diagnosis?

The first point of contact for a patient—not all patients, but for a significant majority of patients—would be through an eye clinic liaison officer, known as an ECLO, who are based in eye clinics across Wales. RNIB fund the vast majority of those in south Wales—Hywel Dda down, if you like. That patient will then be able to be referred from that ECLO into a rehab service; they would have information around different tax arrangements, employments and also, critically, the counselling service that is run by RNIB, again just reiterating the point around the mental health impact of sight loss. That doesn't happen for everybody, because not everybody wants to see an ECLO at that moment. Quite a lot of people just want to get out of that eye clinic—you know, their minds have been blown. So, again, we do our best to make sure they're aware of the RNIB helpline services et cetera along those lines.

Just on the point of ECLO funding as well, in certain health boards—for example, Hywel Dda has never paid one penny towards the ECLO. RNIB have funded 1.5 ECLOs for at least the last 10 years, and we are a charity trying to make ends meet. And that service, the ECLO service, is really a lifesaver for many people with sight loss.

So, what happens in those health boards that don't have an eye clinic liaison officer? I think we're talking Powys and Betsi—is that right?

There is coverage in those areas. They're employed directly by the NHS in those areas.

Okay. Fine. So, in Betsi and Powys, the NHS employs these liaison officers, and in all the other health boards, the RNIB is having to fund them or—

It's slightly more mixed. The RNIB fund the one in Powys, for example, but in Betsi it's NHS. So, Cardiff is employed by RNIB or Cardiff Institute for the Blind, but funded via Cardiff and Vale health board. So, it's a mixed bag of funding.

Okay. Well, perhaps outside the meeting you could give us just an update on that.

Could I add something to that as well? We have worked—the third sector has worked very closely with Welsh Government and the NHS on providing information to people on where they can go for support. If you have a certain level of sight loss, you have a certificate of visual impairment, and we're certainly not convinced that all the people who actually should be having a certificate of visual impairment are receiving it appropriately at the right time. So, that actually passports people into services. If you have your certificate, you will have a referral into rehabilitation in the local authority. It also gives information on other places to go for advice. Again, we know of certificates just not being issued because of the time it might take the ophthalmologists to complete them. There are other areas, which is really good practice, where the ECLO is helping to fill them, and other times we know that a certificate has been issued but it sits in an in tray somewhere until eventually it might be sent to the local authority, and that's where your crucial support would be from the local authority rehabilitation officer.

So, you're telling us that the ophthalmologist is filling in these forms. Why? What's wrong with an administrator—a much more junior paid member of staff?

Absolutely. ECLOs can fill in the forms in many places, and do a lot of the admin. Of course, it would need to be authorised and signed off by the consultant to say that the information's there, but it doesn't have to be the consultant doing it.


Indeed. Okay. I think we've covered, really, the problems of getting people to make a complaint, particularly if the failure to be seen in an appropriate time leads to really serious loss of eyesight. So, I'll pass you back to the Chair, then.

We're being very succinct this morning—or this afternoon, I should say. 

Thank you, Chair. You touched on issues around data recording earlier, but I'd just like to dig a little deeper there, if I may. We understand that health boards have worked to try and improve the accuracy of follow-up waiting lists. Do you have any residual concerns about the accuracy of follow-up waiting lists for ophthalmology patients?

Yes. Similar to what I said earlier, really. We know that they're having big issues cleansing the data ahead of the first batch of measures reporting in April. A number of duplicates are coming up, which is obviously essential to that validation process. So, it's not a very accurate picture at the moment. And because we know, as I said, people are being automatically given their priority status based on how long they've been waiting, and the vast majority of people have been waiting over their target time.

It will be very messy, I'd suggest, for the next year or so, while health boards work through this huge backlog, and also whilst implementing the electronic patient record. So, I think it has to be borne in mind that there's a lot of admin and paperwork that they're having to work through.

I think it's worth adding on the electronic patient record as well, again, we've really welcomed that, because that's something that consultants were telling us was essential to be able to deliver the measures. But obviously, there's going to be quite a long period of implementation before that kicks in, so we wouldn't want them to take the pedal off pushing those changes through.

It's also critical that the electronic patient record isn't seen as a silver bullet for all these problems. It's a massive tool—a really positive tool that can link up high street opticians or optometrists with the eye clinic—but again, any IT system is only as good as the people who input the data and how that data is maintained. So, it's really positive, but it's not a silver bullet. 

Absolutely. In fact, my next question was going to be to ask you how much you know about that electronic system, as well. Because I agree with your comments, Gareth, but also, I would say that any electronic system is only as good as the system itself. You know, we've taken evidence here with regard to NHS informatics in previous inquiries where we've been quite concerned about the inability of one particular IT system within the NHS to talk to another. So, I just wonder, you know, how much have you been briefed about this system, and whether it's able to do all the things that you suggested there, Gareth.

I couldn't give you great detail. I'm involved with the steering group on the electronic patient record that has been piloted in Cardiff and Vale, where it has been working well, I understand, in terms of the way in which it talks from the high street opticians to eye clinics. I've heard positive—. I've been in meetings where there's been positive talk about it. How that is disseminated across Wales, the system, I don't know, but as far as I'm aware, the framework that's in place is positive. But ask me that question again in a year's time and we'll have more information.

We do know that there are good people sitting on the steering group, which is pulling together the whole procurement and what we're going to be tendering for. So, there are very experienced people from across a range of disciplines on that working group.

And it's certainly welcome that Wales is obviously the first country to announce not only the measures, but a pan-Wales solution, as well. The other thing I suppose we would want to add on that is that we wouldn't want that to distract from also driving through major changes in service redesign. Distrust of optometrists by consultants is often cited as an issue as well, so we need to bridge those barriers as well to be able to get everyone working together.

And if I could just pick up on Elin's point there, as I said to you earlier about the new measures coming in, and Wales being the first to actually grasp the nettle and deal directly with the condition rather than the date, Wales again has been the first to implement the electronic patient record. My role takes me across the UK, and I hear in all sorts of different parts of England, for example, 'An electronic patient record; that will never happen'. That's a commonly heard thing, yet, as a nation, we're putting the building blocks in place for that, and as Ansley says, the people behind it are dedicated, committed and have a lot of energy. So that, again, should be congratulated.


And if I could add to that, even this morning, from my colleague in Northern Ireland, I had a request for information from the cross-party group on vision—that we're being looked to for some of the best practice. 

Just for the benefit of viewers and Members, the noise emanating from under the table is the dog, the guide dog. It's probably been picked up on the mike. That's fine. It's very well behaved. Jenny Rathbone.

Can I just come back? You said earlier that obviously the public services ombudsman can't investigate until local resolution has been completed, or exhausted, rather. How promptly are health boards actually responding to those people who do feel able to complain?

Again, anecdotally, it can take weeks and months, I think, just from people I've spoken to. 

It's something we would like to see. Because we would expect a service that we know is not working at the moment for a lot of people—you would expect to see high numbers of concerns and complaints, without a doubt, because people's sight is at risk. I think, coming back to one of the earlier figures you would have seen in our report, if you're going for the first time into ophthalmology you have a 10 per cent risk that your sight could be at risk, because a lot of these patients will be seen and there's not some risk there and they will be discharged. Of the people waiting for the follow up appointment, 90 per cent of these people are at risk of irreversible sight loss—90 per cent. That is just massive. 

What we're finding as well is that when your appointment is cancelled, the clinical risk aspect of that isn't explained to you. So, again, just from people I've spoken to, a lot will say, 'Oh, it can't be that urgent', or 'the health board's given up on my sight'—that sort of element. So, there's also, again—I think you mentioned it earlier—a perception that all is fine, it's in hand and it wouldn't have been cancelled if it was urgent. So, there's a perception issue there as well. 

Would you be able to hazard a guess on the extent to which the number of complaints around ophthalmology and optometry is being understated?

That would be difficult to hazard a guess at, but it would be very interesting to—

In reality it's huge. I think I lost my train there—if 90 per cent of people, and the huge numbers, are waiting, and they're at risk, these people should be making complaints. We know they're at risk, but there are people who don't know they're at risk as well. So we would expect to have a lot of complaints and we need to get these figures from health boards. 

We've certainly got the statistics—the huge, burgeoning statistics about the numbers who are waiting more than the 26-week period. So, of that number, have we any idea what proportion actually complain?

The only thing I would draw out is from the auditor general's report again—that there's been a 71 per cent increase in the number of patients waiting twice as long as they should be since 2015 again, which was shocking. 

Do you get the feeling that—? We know that, obviously, the NHS budget is tight, and so ophthalmology is almost being squeezed down the agenda, as you say. If your appointment can be postponed, if that treatment can be postponed, because it could be seen as a less serious category than cancer treatment, or whatever it might be, then that's what's been happening to push it lower down—economies of scale and all that. Is that a fair assessment?

We would hope that the measures at least would change that now, because again, we should be prioritising the people most at risk of that irreversible sight loss, and not treating it can impact on patients ending up in other parts of the health service due to falls and so on as well. Obviously, you can't compare like for like with the other disciplines as well, but there are a number of other factors with ophthalmology as well, which would prioritise—. Obviously, we want to stop patients going blind unnecessarily, at the end of the day. 

I think, going back to the previous point, we don't actually know the scale or the cost around the capacity issues. Because if we have service redesign—it has been outlined in numerous reports what we need to be doing, but if we do that, often what we would be doing is upskilling people that are not paid at the top of scales, and releasing their capacity. So, we need to do that modelling first. We need to make sure that we know what that real demand is. Because in some ways, what we're doing is not just asking for more and more money to be thrown into the pot; we have to redesign the service to make sure that the people who are within the system—and that could be right across the board, from community and optometry to administrators, to the people who use the booking the system, to nurse-injectors, to nurses and healthcare assistants—are all skilled up to the top of licence to work as a holistic system. 


I think, in previous workforce development plans, it's been purely focused on the clinical professions within an eye clinic. Again, if we take rugby as an analogy, that's just like training the forwards, it's not training the backs as well, yet you need both groups to be able to get that ball across the line. So, when it comes to workforce development, people such as admin, the informatics, the people who do the bookings, it's a team, it's an eye-clinic team. And the workforce development should be viewed in that context. 

And we're not seeing enough evidence of that workforce planning as well. 

Thank you. So, in terms of the wider transformation funding that has been released and the whole push behind multi-disciplinary team working, advanced paramedic practitioners, the fact that there is pressure on health boards to redesign, to transform and to change that culture, do you feel, then, that, within the sector of eye care, or the field of eye care, that this is not happening in the same way that it could be in other sectors, or is it more systemic, that there are different health boards taking forward transformation at a different pace?

I think there's a combination of—. I think both of the things you said there are true. I think some health boards, like we've seen from Aneurin Bevan, are saying, 'Actually, we've taken this, we have given it the priority it needs and we're taking leadership, accountability, and we've got a plan.' But also, with the recent funding—. There was the £4.4 million provided to health boards, which had to bid. What they actually found was that the bids were lacking innovation. The bids were lacking any real good grasp of what change needed to happen. And I think nearly all of these bids went back to the health boards to say, 'Actually, this isn't good enough. We need to have better.' And the bids went back in.

That clearly has been really helpful. So, for example, I know that, in Betsi, they were saying, 'We want to address this cultural issue between community, optometry and consultants. We want to get that relationship right. We want to build that trust. How can we do it?' That's fantastic, and that's something that can be shared across all of the health boards. Then we also know of some other health boards, like Cardiff and the Vale, who are now using that money to implement more optometric diagnostic and treatment centres. So, that money has been fantastic in terms of introducing, but also the learning has to, then, go across all health boards, and that seems to be lacking. 

Elin and I speak to a lot of health boards at different levels—from the health board eye care groups, chief executives, senior staff—and we often find that we are telling people about good practice, and we're telling them about training, we're telling them about ideas, and we're conveying that information, which clearly is not right; there should be an approach that means that information is shared strategically and is pushed forward. 

So, going back to that original—. Sorry, you wanted to interject, but going back to that original point that you asked around accountability within health boards and the levers that are needed so that we can make every health board step up to the plate like, for instance, Aneurin Bevan, how do you feel that that would effectively move forward the redesign of, in particular, ophthalmology, eye care?

I've got in front of me the recommendations from the Wales Audit Office report, and we would wholeheartedly agree and think they are put very succinctly. Those are things like medical directors being made accountable to make sure that we drive that quality, that safeguarding, these outcomes; also about making sure that the different groups and the different eye care groups, from Welsh Government down to health board groups, are very clear, again, on what their remit, what their accountability, is, and that there's reporting back on that. So, again, it's about systematic leadership and accountability. 

May I just add as well that, in terms of the £4.7 million, I think, that was provided to health boards, I was on the panel that assessed the bids and what struck me was just the massive—? It seemed to be a collective delusion of mediocrity. There was no aspiration, there was very little—they were just very, very stuck in the ways in which they've always done business, if you like. There was no, really, great new thinking, and so for them to have to go back to health boards and say, 'You could try harder', I think says everything. There needs to be a new way of thinking, a new way of doing. Instead of trying to be all things to all people, it's about doing less better. Let's get this system sorted, but let's also have some passion and some creativity about this. 


Okay. I think you've partially answered some of my questions, so I'm not going to ask all of them. But over and above the—. We've talked about, potentially, the additional £3.3 million non-recurrent allocation to health boards, which supports changes to transform eye care services and, obviously, we've talked about the national pathway and the measures. And we've also talked about the fact that other nations are looking to Wales in terms of what's happening around our prioritisation around clinical need, but, as far as you're concerned, what else can be done? And we've talked about leadership. Is there anything else that can be done in terms of providing a more sustainable long-term solution to growing the services and to the needs that are clearly there to be able draw upon that?   

We have already touched on a lot of them, but just to echo, really, breaking down and shaking those traditional models, really, where a clinician still has to see a patient, which isn't true in all instances. 

So, if I interrupt you, if we did have that service redesign, as has been clearly articulated, strategically, and if every health board is doing as it should be doing in terms of transformation around that team, that surely should happen by default. 

Yes. If all that was put in place, then we should have a system. It may not at the end—. There still may be a capacity/demand issue, but we will know where that is and then can address that long term. 

So, that wider operational, that workforce, planning lack—. We don't know what that capacity is. 

And I think that's exactly it—we don't know what the scale of the problem is yet. We've got an ageing population, sight loss set to double by 2050, et cetera, but we don't know what we need yet because that strategic planning just isn't happening.   

Okay. How important is it—? You mentioned earlier on, and I think Jenny Rathbone also touched upon this—you mentioned the fact that, potentially, there could be a situation across the UK where eye care consultants are not working to full capacity. Potentially, there is discussion around the fact  that is that because they're not actually working to that contract and, potentially, a lot of that is in the private healthcare sector. So, is there an issue whereby health boards are concerned to challenge consultants around that and, if so, in your opinion—it's a very emotive subject, but we need to touch upon it—how can that be moved forwards so that we're having a greater percentage of consultant time spent in the NHS? 

I think that's absolutely correct. I think what we're dealing with here is a historic, generally old boys club culture that has rebutted challenge, has pushed back on challenge. However, again, today, we're seeing people go blind in Wales. Somebody senior in health boards and Welsh Government needs to grasp the nettle, needs to deals with this. As I said earlier, my view, personal view, is that this is a safeguarding scandal, where we're allowing—because of certain behaviours within that group of professionals, people are still losing their sight. Either you work for the NHS, or you don't. Again, this is my own personal view, not necessarily that of RNIB. So, you absolutely hit the nail on the head as far as I'm concerned; that is a critical factor in terms of consultants—where they spend their time working. 

In terms of our experience—I think we've already touched on it—a consultant needs to be doing what only a consultant can do. Our experience of that would be—. Gareth and I both sit on the Wales ophthalmic planned care board, and we always, for example, look at how each health board is adhering to the all-Wales national clinical pathways. Where there are varying differentiations between different health boards, I would question where, again, the accountability is for changing that really then happens.

So, when you talk about accountability, you are talking about a whole oversight around that in terms of what is proposed around a medical directorship. 

Again, consultants can do what they like. They're not accountable to anybody; that's what it seems to be like. They can do whatever, and that's the situation we're in.  


I'm going to ask one more, if I may, Chair, and that is around the impact of ophthalmic diagnostic and treatment centres. If there were to be more effective service roll-out across Wales, how would that move things forward?

There has actually been a recent report on this—you may not have seen it. I'm not sure whether it's been published officially, but the delivery unit—at the beginning of this year, I think, we received this report—did a review of ODTCs. And that was very interesting, because it was actually giving, again, clear recommendations in terms of saying that this works—ODTCs can work very well in the mix and everything. But, again, they did talk about culture within that report as well, and many of the recommendations will reflect what was in the audit office report as well, and other reports, talking about the various groups, like the planned care board and the eye care group, about rationalising, making sure that they're priority driven and that they're timelined and accountable. Again, they talk about saying, 'We don't have the costs, we don't know at the moment what this will look like if we implemented all of this, and we need to do that'. We also talked about the electronic patient record and how important that is to get in there. And I don't know whether the—I never get the right words—. The integrated medium-term plans, the healthcare plans, they should be integral to that, but—. They are now in there this year, but it's a line, you know, within the many things that health boards are trying to change and transform; it's not enough.

That report would probably be of interest to this committee, just because it gives a baseline for any future expansion as well.

Could we get a copy of that? That would be beneficial. Jenny Rathbone.

I just wondered if you could describe what is the make-up—the multi-agency mix—of an ODTC. Who's the lead clinician, and how many people does she or he have working with them?

I suggest we write and give you an update on that one separately, if that's all right.

Yes. We'd better write and give you the correct breakdown.

Okay. So, you're not—. Okay. So, it's not something that can be done from an optometry—

Yes. What we have—if I give an example: Newport is the one that's given us a really good example, where they've actually got their own consulting rooms, and it's all set up there.

In the high street, in Specsavers. And there have been a number of Specsavers that have these ODTCs in them, and have worked very well, particularly being high street.

In terms of transport, it's very easy to get to—everybody knows where it is. So, the one in Newport, the ground floor is a Specsavers shop, if you like—as here in Cardiff, in Queen Street—but the first floor is an ODTC, with injecting rooms, with about six different injecting rooms. So, staff from the Gwent will work there in the mornings, and then return to the Gwent, to the eye clinic there, in the afternoons. So, it is a real positive model of what can be done.

Certainly for patient experience.

Thank you very much, Chair. Just further on this Newport—I happened to be there a couple of times, and they are doing a great service to the community there, and the service in early detection of eye deterioration is exceptional. I wonder whether the NHS takes notice and gives the priority to these patients, because, with age, eyes deteriorate, and the age factor and the living standard— there are various factors, when eyesight deteriorates, and the fact is—. Apart from my question, Chair, over 10 years ago, Andrea, a good lady, used to come and work for your department a lot, and came here a few times, and I did help her with the RNIB. There were a couple of areas—away from the health service now—there was transportation for the blind people, which we haven't touched yet—you know, impaired eyesight, when they travel, there is no audio-visual system in the trains or the buses or taxis or anything; it's a great hindrance for blind people. So, over 10 years ago, the Welsh Government, I heard a few times—[Inaudible.]—is doing a wonderful job. Have they really done on that area so far?

I would say it's a mixed bag. But, if I just give an example of some really good work that's going on at the moment, we're working really closely with Transport for Wales on accessibility, and they are totally committed to ensuring that accessibility is great. We're working with people with sight loss and RNIB on that panel and with other organisations in the sector, like Guide Dogs. But issues about buses with having all the audio and everything, it's hit and miss again.


From my own personal experience, and as a guide dog owner, and just working in this sector, there are still ongoing issues with guide dog owners being refused taxis across Wales, which I understand the Guide Dogs charity themselves are working hard on, but that is an issue that hasn't gone away. As Ansley says, things around buses and trains, again from personal experience, have improved significantly.

The issues are definitely still there.

Oh yes, still there, but they've improved.

Now I'll come to the clinical engagement and new model of working, which you've already mentioned. Your paper highlighted a need for clinicians to embrace service redesign and new models and for greater priority on integrating community optometry and hospital eye services. If there is any resistance—and you mentioned there is some—amongst clinicians to change ways of working, why is this and what could be done to improve the situation?

Okay. We've mentioned a few times that we definitely know that that is an issue and you've got it in evidence from Cardiff and the Vale. We've mentioned the letter from the health Minister to the cross-party group, which mentions culture within there as well, and also Betsi, which is mentioned, which says, 'We recognise that there is a mistrust between ophthalmology and community.' So, we know it is a problem.

I think again we seem to come back to the same issue in terms of accountability and you're here to do a job. Winning of hearts and minds and making institutional change is incredibly difficult, and we recognise that as well. We certainly know at the beginning of the process of the new outcome measures that Welsh Government put on a number of events for ophthalmologists. To try and get the ophthalmologists to attend these events themselves in itself was nigh on impossible. I think that initial event had to be cancelled in the end because they didn't get the buy-in.

What we're also seeing is, when we attend some of these—at all levels, the planned care board, the eye care steering group, and at local health board level—you often do not get clinicians attending. They try to make these meetings on days when there are no surgeries on, but certainly you will see a few, with the usual health boards attending and other health boards just not engaging. You might go to some meetings in the health board eye care groups where you have no ophthalmologists attending at all.

Absolutely, I echo exactly what Ansley has just said there. It does go back to the old boys' club and that self-employed attitude. We've talked about ways in which that may be leveraged. One other point that I would like to make is, in terms of optometry, there is such a skilled huge workforce there of highly skilled, highly qualified people working in high-street opticians, be they independents or be they large chains across Wales. It's an army of professionals that isn't being used as effectively as it could be in terms of dealing with the bigger picture.

What we're seeing now with the e-referral and electronic patient record is where optometrists have concerns around a patient they can refer pictures of the eye into a consultant who, in a couple of minutes, can say whether or not that person needs to come into a clinic. That done on scale will reduce huge numbers of people going to an eye clinic, therefore releasing a lot of capacity to deal with people who really need to be seen. However, because of the culture and the lack of trust from ophthalmologists towards optometrists, that's not being done as quickly as it could be. So, we're missing a massive trick there. Optometry Wales has a critical part to play in this. I know that they want to be as engaged as possible.

Just to chip in, we know that culturally there will be a broader resistance to change, but we're certainly looking at some consultants here not the vast majority. We'd say probably the clinical community needs to better understand the barriers, and the other thing is not to be diverted by those referral-to-treatment times again when it comes to ophthalmology, because the measures absolutely have to take precedence.


Just very briefly, and I can actually speak to that. I did, anecdotally, take my son straight to have emergency healthcare that stopped his one eye going blind, purely from the optometrist, so I absolutely concur with that. In regard to your statement that at some health boards you do get engagement from consultants, and the point is very valid that we are talking around certain engagements in certain areas, so if certain health boards can engage consultants effectively and gain buy-in, what is stopping that happening then in different health boards? 

I think Aneurin Bevan gave a pretty good answer similar to this earlier, and it's having that leadership level. For them, they very much identified it was an issue and put the right people in place to have those conversations. 

About a year ago, I visited an optometrist in Pentwyn, with the health Minister, run by two women as it happens. You know, I'm not a clinician, but they were trialling being able to send the images that they'd taken of a patient's eye straight to the consultant if they thought there was cause for concern. Is that now standard? It's probably more than a year ago.

That was part of the pilot for the e-referral and electronic patient record that was taking place in Cardiff and the Vale. That's now been scaled up to become the all-Wales electronic patient record. So, yes, it is. 

So, all optometrists in my patch would have this facility, would they? 

Not at the moment. Because it was a pilot, certain ones were selected depending—they had a range of small independents up to large-scale. 

They will do in due course.

That is, if you like, what the Minister announced two or three weeks ago. That is the launch of rolling that out across—.

That is part of that. There will be some cost for the equipment that is needed to take these quality images, but the electronic patient record is—.

Sure. So, any idea how long it'll be before all optometrists can do that? Because it seems to me that might be a way of actually eliminating the, you know, 'Which are the urgent ones and not-urgent ones?' It's similar to what Aneurin Bevan told us about using a medical photographer to photograph people's backs to see if they've got skin cancer. It's a no-brainer, really. So, it's a lot quicker than having to, 'Hello, Mrs Jones—', and talk to the patient. You can see the image. 

The next phase of that pilot is due to be completed in March 2020 with a view to it going all-Wales then. That's very ambitious but that's the current target, that by March 2020 we will be able to launch the electronic patient record across Wales. 

But that's just that part of it. So, in terms of what we're talking about in terms of that imaging and technology, we don't ourselves know, I don't think. There's not a strategic plan there to say that this is what we need, when we need them and where the money's coming from. 

But we'd be happy to get back to you and give you some exact—. 

Okay. So, obviously the technology will help change the way we work, but it will also require cultural shift in the way that the people at the very top of the profession work, because otherwise it's a waste of money. 

Yes. But I would say that if you look at the diabetic retinopathy service, that's the way they operate. They have a team of people who sit, and their job is to look at images of diabetic eyes and actually they will be able to say, 'Well, I'll look at the last time that was done six months ago and a year ago', compare them, look at these images—you know, very technical specialists—and then make a decision about what happens next. And then it's all quality controlled as well. So, it already happens for another discipline. 

So, is there any evidence from around the world that this could in part be automated or is the shape of the eye so individual to—?

Anecdotally speaking, there is lots of evidence that technology can be used. Even down to things like apps on iPhones now can be used. In Wales, we've not got that far yet, but yes. 

But an automated analysis of the images could help you identify the ones that required additional—that needed to be seen urgently in clinic for an operation. 


Sure, so long as those are checked by a qualified, experienced clinician.

But we're seeing technology change at such a rapid pace, who knows? What we don't have now may be there in two years or five years' time. 

Okay. So, are there other service models that might be relevant to the way in which we need to transform the eye care service in Wales? From across the UK, or elsewhere in Europe, or anywhere else for that matter.

It's difficult to compare with other countries, because they don't have the NHS. So, it's very tricky and I don't think it's safe to do that.

Okay, but in France, they don't have the NHS, but they reimburse 90 per cent.

I wouldn't want to comment on that. There are certain pockets of very good practice in England, certainly around cataracts pathways, such as the Sunderland trust, and I know that people from Wales have been looking closely at that.

Yes. And in terms of hospital design, NHS Highland, for example, has got some real cutting-edge, new-build ophthalmology clinics coming on line.

So, Aneurin Bevan talked to us very convincingly about using patient self-monitoring as part of the new models of working, prudent healthcare. Are there examples that you'd be able to share with us around asking patients to alert the health service when they think they need to be seen again, or indeed telemedicine to enable patients to be seen remotely through Skype or something like that?

Again, in NHS Highland, Skype is being used a lot at the moment, obviously for patients who live in the Hebrides, in terms of travelling to Inverness or Portree for treatment. That is a pilot, I think, that Wales should keep a very close eye on. Also, around broadband and Wi-Fi issues, they seem to have overcome those, which enables Skype to be used. I can't remember the exact name of that pilot, but I could get that to hand.

So, are you aware of any of the health boards who serve quite remote communities? That wouldn't be Cardiff and the Vale, obviously, but are they looking at that sort of thing?

I'm not aware of that. They may well be, but I'm not aware, personally.

Going back to the second part of that question as well—about people looking after their own health and advising when they think they need to be seen—I think part of the issue is depending on your sight condition. There are clinically led times, that you may need to have an injection every four weeks or you may have drops you need to take every night. So, obviously, one of the things that we can do when we meet people or they come to RNIB for advice is to make sure that people are compliant with their medication regime. If you assume people are compliant, they may notice a big difference at some point and be worried, and at which point they should go back. But, again, it comes to the system being there that is going to say, 'Okay, we want to see you every six months.' We know that with diabetes, for example, they're looking to say, 'At which point do we call people back every year? Or is there a certain point that we don't call them back?' You know, looking at risk. And they're talking about moving—and this is across the UK—to a two-year screening, because if you've had a couple of okay screens, then the likelihood of that risk ramping up is not so high. So, there are things like that that could be considered in terms of where risk factors would be, in terms of going back to your consultant.  

Your evidence has been admirably clear and direct. Sometimes startlingly and, indeed, disturbingly so. How easy do you think it is, as an ophthalmology patient, to navigate your way through the labyrinth of GP services and optometry and secondary care ophthalmology patient pathways?

I think it's very, very difficult. It's confusing. Again, it can be quite bewildering at times. And again, I think, in the patient stories that you've had sight of, it says about the fear that that provides. If I may, as well, just say about navigating physically through a hospital to try to find an eye clinic. In Cardiff and the Vale, it's probably the darkest part of the hospital—the eye clinic. I'm not being flippant in that. A lot of eye clinics across Wales just visually are very challenging. Also, you have to remember that a lot of people leave eye clinics having had eye drops put in, so their vision, which is poor anyway, is even worse. So, it's very difficult, and this whole thing of being bounced from opticians to general practitioner to eye clinic, it's very confusing, and also very dangerous in terms of the timescales.


Can I add a couple of things to that? This is the first time, actually—. Gareth has just mentioned the physical environment. We recently did some work at the University Hospital of Wales with the radiology unit, which was being refurbished and we worked with them. We've got something called Visibly Better design standards—it's about the design principles to use to make the environment more accessible. 

I remember on that day that I was standing in the ward, and I saw Gareth walking past and turning back around because he knew he'd missed us, because he'd gone from the dark into the light and gone into the dark again. It was really stark, in terms of seeing Gareth walk past and immediately turn back because he knew that is where we were going to be, because of that physical environment. We often get people saying it's incredibly difficult—you know, 'Go to door No. 3'. Well, if you can't see, how do you know where door No. 3 is? There's a lot more we could say about that.

Again, you might touch on it later, and I think we put it in our evidence, about accessible healthcare standards. Often, we find that people still—the majority of patients—will not get the information about appointments or about how to look after their health in a format that they can actually access.

I'll give an example—it isn't to do with ophthalmology, but it's the type of thing that we hear often. One of the women who is working with us had gone to the dentist because she had a sore tooth and she needed to see the dentist. We often go and they'll say, 'Could you update your medical form and fill that in?', and she said, 'Oh, I can't read it, I'm sorry'. They said, 'Well, we can't see you then—you need to fill it in'. She goes, 'But I can't', so, literally, she sat down and she asked the man next to her, who was a patient waiting to see the dentist, to fill in this form for her, with her name, her address and her personal details. This happened within the last year. She's also someone with regular ophthalmology appointments. Because they're not in the format—. If she had it by e-mail, she could read it with access technology. She gets a letter through, so she gets her young daughter—primary-school daughter—to read the letter. She said, 'Because it was the usual kind of letter, I said, "Oh, that's fine", but they've changed the letter and on the bottom it says, "Let us know whether you can make the appointment"'. She turns up, and they said, 'Oh, you didn't get back to us, so you haven't got an appointment today'. So, what we're finding is that people don't even know that they have an appointment—the system or 'ring this number'—so accessible healthcare is a huge issue that's just not being addressed.

It's a patient safety issue as well, isn't it? Just coming back to your earlier point as well about navigating between primary and secondary care, we know that it should be seamless but it's not, as evidenced by the cancelled and delayed appointment letters. Often, the optometrist won't know the status of the patient who's gone through to secondary care. Probably more work needs to be done in general to raise patient awareness of where to go for different types of support as well.

It seems to me that a lot of these things are just pure thoughtlessness. It's not something that requires more money, necessarily, to be spent on them, but it's simply doing things in a way that is more suitable for the needs of the patients you're dealing with. I've had this in the last week—not in relation to the health service. My wife has had two eye operations in the last month, as a result of which, of course, she can't see terribly well at the minute. She tried to access her credit card account, plugged in the wrong password and got locked out. In order to get back online, she had to fill out all of the answers to questions. Because she couldn't see to do it herself, we were then told, 'Oh, well, I'm afraid you'll just have to wait until you can see, because nobody else, including your husband, is allowed to do this for reasons of security.' It's that kind of 'computer says no' mentality, which is utterly absurd. 

Often, if you have got time to spend in front of people, there is the lightbulb moment. If you don't have sight loss yourself, you wouldn't even think of some of these issues. A lot of staff do not have training to understand the impact and the day-to-day issues. Something we did—RNIB at a UK level—recently is we worked with Specsavers to set up an ambassadors course—a sight loss ambassadors course—and that was rolled out across the UK. But that actually meant, when you're coming in, your receptionist, your administrator—. If you don't have the questions raised and the impact on people, you just would not think about it. So, a lot of this is about raising the issues for all staff across the board.

The other thing that we did touch on briefly, when we are talking about navigating primary and secondary care—. I think, as well, people with sight loss, or any of us in any health situation, if you do not realise the urgency and the risk, then you may not be pushing that as hard as you think. So, for example, most people that maybe have a potential cancer diagnosis know that cancer is very important, very serious, it has to be dealt with quickly, whereas the 90 per cent of patients on the waiting list for another appointment, they don't know that they're at risk of irreversible sight loss. If people knew that, they may be pushing for their services more, but no-one is provided with that information.


I'll point out we are in the last couple of minutes, so if Members could be succinct with their questions.

Right. Your paper says that the health boards are not effectively implementing Welsh Government's accessible healthcare standards. What, in your view, needs to be done to reinforce these standards and ensure a more consistent implementation?

Yes, absolutely. So, the all-Wales accessible healthcare standards, as we know, were launched in 2013, and Wales, again, was ahead of the game in launching those in comparison with the other four nations too. There's an interesting comparison to be made here as well, I think, between the Welsh language standards and how they are perceived as well. Many blind and partially sighted people in Wales report they're not currently able to understand or make informed decisions about their own healthcare because the information's not given to them in the appropriate format—examples that Ansley's just given—or they're not routinely communicated in a way that's appropriate to their needs. This is particularly important, obviously, when it comes to ophthalmology patients as well.

It's worth making the point as well that there's still a very low awareness amongst the general public and, of course, NHS staff, about the existence of the standards, which are ultimately built on the Equality Act but go into more detail about how that healthcare support should be delivered. Just as a quick example, Public Health Wales and the Centre for Equality and Human Rights ran a survey for GP practice staff last year, and only 45 per cent had even heard of the standards, and only 26 per cent felt that the standards had actually made a difference to people with sight loss and hearing loss across Wales. So, for us, with those standards, there's a real case to be made about making them much tougher. At the moment, health boards aren't being held to account over them—they don't need to report on action plans, for example—and they're not clear with the public about how they're adhering to the standards. So, that's what I would add on that.

And a final wash-up question, then. We've heard about your role in relation to the eye healthcare steering board, and you mentioned the ophthalmology planned care board earlier on. It's evident that your work has substantially improved things in recent times and has helped to drive positive change. Overall, do you feel that the concerns that you've raised have been responded to effectively by the Welsh Government and NHS Wales, and are there any lessons you could identify for groups that may be raising similar concerns about follow-up out-patient delays in other specialities?

Certainly, I would say that Welsh Government, in terms of their senior officials that are pushing this agenda forward, absolutely 100 per cent get the issues. They totally understand the issues, they totally understand what needs to be done across the board in terms of workforce planning, electronic patient record, the community. They absolutely get it, and they are being thwarted—that may not be the word, or may be the word, but thwarted—by health boards, or some health board resistance to making this change happen. There is some fantastic stuff, and we know that that is there. Lots of pockets of good practice, and the ophthalmic planned care board is again fairly new in terms of driving this agenda forward, but it's got to the point where it now needs to be reviewed because it doesn't have, maybe, some of the leadership on that board to drive this issue forward.

I'd also echo Ansley's comments there around the senior officials within Welsh Government who've really pushed this forward, as has the chair of the Welsh ophthalmic planned care board, and we've benefited from consistency in that post, and both groups you're talking about there have demonstrated that simply having to be so dogmatic to try and get the simple things done comes back to the culture of that brick wall that we're facing time and time again, and the culture within the NHS is the issue. It's blocking change and it's rendering people blind. 


I think I would also add to your point that it was in 2014 that RNIB launched our first 'Real patients coming to real harm' report, and it has been a slog to get it to this point and recognised, and those issues recognised, but having Welsh Government on board now is obviously significantly making a difference. So, the potential is there. We know we've got the electronic patient record, which we've talked about, but it's not going to solve the capacity issues necessarily. What I think we'd be concerned about now is very much the pace of change that we talked about and having that leadership as well at health board level.  

I think, maybe, to finish up on, it's going back to that pace of change. That pace of change is impacting on people in Wales losing their sight. That's the bottom line. While we sit here and discuss it and the health boards—. We know they're under pressure and we absolutely want to be supportive of health boards, but, actually, that could be you, that could be me, it could be one of our family members that's losing their sight because this is not being pushed forward as quickly as it could. 

And that's a very good point to end on. Can I thank our witnesses, Elin Haf Edwards, Ansley Workman and Gareth Davies, for being with us today? We'll send you a copy of today's transcript for you to check the veracity. But thanks for being with us today. That's been really helpful. We'll feed that into our wider work on this subject. 

4. Cynnig o dan Reol Sefydlog 17.42 i benderfynu gwahardd y cyhoedd o’r cyfarfod
4. Motion under Standing Order 17.42 to resolve to exclude the public from the meeting

Okay. I move Standing Order 17.42 to meet in private for item 5 of today's business and item 1 of the meeting on 29 April. It seems a long way off, but that's the next meeting after this one. 


bod y pwyllgor yn penderfynu gwahardd y cyhoedd o weddill y cyfarfod yn unol â Rheol Sefydlog 17.42(vi).


that the committee resolves to exclude the public from the remainder of the meeting in accordance with Standing Order 17.42(vi).

Cynigiwyd y cynnig.

Motion moved.

Derbyniwyd y cynnig.

Daeth rhan gyhoeddus y cyfarfod i ben am 15:01.

Motion agreed.

The public part of the meeting ended at 15:01.