Health and Social Care Committee

Croeso, bawb. Welcome back. I move to item 3 in regard to our piece of work on the impact of waiting times backlog on people who are waiting for diagnosis or treatment, and this is an evidence session with members from the Wales Cancer Alliance, and I’d be grateful—if I could ask witnesses just to introduce yourselves.

Good morning, Members. My name is Richard Pugh, and I'm chair of the Wales Cancer Alliance.

Bore da. Good morning, everyone. I'm Andy Glyde. I'm the senior external affairs manager for the devolved nations at Cancer Research UK, and vice chair of the Wales Cancer Alliance.

Thank you for being with us this morning, and if you have got any—. If you want to come in on a question at all, or come in, just perhaps lift your hand or your pen or something and I’ll make sure I come to you, but it should be easier with two witnesses in this particular session. So, thanks both.

I suppose, just to ask a wider question to start, to you both: what are the cancer screening, diagnosis and treatment backlog times looking like in Wales? A very wide question, I know, to set the scene for the session. Richard.

Thank you, Chair. I think we can both ask that—. It’s a big question to start with, so thanks for warming us up.

Earlier this year, we've seen—with Macmillan, we estimated the backlog to be about 4,000 people who hadn’t come into the system. All the graphs, all the statistics, looked incredible—it looked like we’d cured cancer; I never thought I’d see a graph like that in my lifetime. Unfortunately, it was because of COVID and people not coming into the system. Now, those times have got better, but what the long-term impact of that is we’re yet to see, but what we do know is that people are presenting later. So, for example, our colleagues at Breast Cancer Now, who are part of the Wales Cancer Alliance, are saying that 58,000 fewer women have participated in breast screening. We stopped the breast screening programme for a period of time. So, that’s 58,000 women not coming forward. And what we’re seeing by those waiting times and people not coming into the system is, when they’re coming into the system, they’re actually being diagnosed later. And at Macmillan, which is my day-to-day role, we’ve identified that we’re seeing a 20 per cent increase in people receiving end-of-life welfare benefit support, so that’s the DS1500. So, that’s a 20 per cent increase of people qualifying for that as well.

So, what we’re seeing is that the backlog is here. It’s not around the corner; it’s actually impacting now. So, people are presenting later, people are presenting with more severe cancers, people’s outlooks and outcomes are going to be more severe. I’m sure Andy will come in on some of the other points, but the picture out there isn’t a good one. COVID has had a dramatic impact on cancer, and the statistics and the backlog—we’re actually seeing what that is bringing to us now and, unfortunately, the impact on patients is huge. Thank you, Chair.

Thank you, Richard. Yes, there's been—. We've seen in our papers—. We've seen the statistics, and it does paint a bleak picture, unfortunately. There's been quite a bit of discussion on this topic in the Senedd Chamber this week as well. But I suppose, perhaps coming to Andy, or you, Richard, as well, perhaps if you can just tell us a little bit about the bottlenecks and the pinchpoints in cancer pathways.

I can come in there, if helpful. I think we need to look at cancer diagnosis across the whole piece, in terms of it’s the interval of people coming to the GP, it’s the GP referring through, and then it’s getting in to referral for cancer tests and receiving a diagnosis and then starting treatment. So, if you break up those four things, we know there are probably bottlenecks across every aspect of that. There are lots of people who will point to fewer people coming forward to their GP, certainly towards the start of the pandemic, and that has meant that people are presenting at a later stage, like Rich has said.

But we know that the system hasn’t really worked pre pandemic as well as it should have done. If we look at cancer waiting times, the most recent stats for September being 59 per cent, which means around a third of patients are waiting longer than the 62-day target to start their treatment after their cancer’s been suspected, but, if you look at pre pandemic, we weren’t really that much different before in terms of performance. We’re seeing more patients coming through, definitely, year on year, but we need to address the whole picture here if we’re going to really tackle this issue. There’s no single bottleneck that, if we just solve that, then that’s sorted.

Thanks, Andy. Mike Hedges.

Diolch. I’m going to talk about diagnosis. You mentioned a few moments ago that people weren’t going in the numbers they used to for breast cancer screening. Is that true for all other screenings as well? I've reached the age where now I do bowel cancer screening.

Chair, I can come in on that one. Thank you for the question, Mike. I think it's—. What we saw, obviously, at the start of the pandemic was we saw the three cancer screening programmes that currently operate pausing for a significant amount, three or four months—so, breast, cervical and bowel. They are still recovering; they're still getting through their own backlogs of people who should have been invited during that period, but they are working through them at the moment. I don't think we've got yet the data on uptake to be able to say whether or not people are still not coming through, but we do have anecdotal evidence—you know, the same concerns and worries about going to see your GP or going into hospital for tests exist in some cases, particularly for the follow-on for some of the screening programmes. But I don't think we've got the full picture on that just yet.

Can I try and be helpful, which is that if, when you get the full picture, and if you still find the numbers aren't as high as you would like them to be, then why don't you use us as politicians as part of the help and actually send us things that we can put in local newspapers, put out on social media, to promote people being screened? And perhaps your GP colleagues could also do more on promoting screening.

I think it's a really good suggestion. I think there's a lot that we can do to raise, not just for screening, but for people who have concerning symptoms, that they are seeking help. I think what we've already been doing—both Cancer Research UK and Cancer Research Wales have both run campaigns earlier this year, encouraging people to get to their GP if there's anything that is concerning them or if they're experiencing symptoms that they might not otherwise—. Because we know—I speak to people who have told me that they were diagnosed before the pandemic, but had they spotted that lump or the thing that was worrying them at the height of lockdown, they wouldn't have contacted their GP for one reason or another. And we've been doing quite a lot of work to try and understand what those barriers were and how we can start addressing them. But there will be people out there who did put off potentially going to screening or going to see their GP, and that's hugely concerning.

Richard.

Thanks, Chair. Just to build on to Andy's point there, just to reaffirm what Andy said, two charities applied for money to do this campaign. That in itself should have been not charities running that. So, two charities had to apply for money to run a campaign to raise awareness that people weren't presenting for cancer. I know we're answering questions, but does that seem right? What I would say—. They've had to go and put the resource into things that are not their core activities in one way. That should have been a national campaign, in my eyes, and we should still have one now.

Can I just say I agree with you entirely? But I think that some of your medical colleagues, especially GPs, can do more as well. And people often say, when you have these symptoms, 'Go and see a GP.' Do you want to phone up and get their appointments for them? People do—they've got a bit of a problem, they think it might be serious, they phone the GP for two, three days, they don't get through—so, I hope that changes will make a difference—and then they say, 'Oh, well, forget about it; it's got no worse.' And I think that is one of the problems. Everybody says, 'See a GP'; no -one tells you how you can actually do it.

Absolutely, and I think that was certainly a big bit of feedback that we had from when we were running our campaign, and I'm sure the same was true for Cancer Research Wales as well. And we did encourage people to be persistent; we know that's not easy. We know that access to GPs can be quite variable across Wales and, both before the campaign ran but also during and since, we've been working with the Wales cancer network and Welsh Government to make sure that they're aware of that sort of feedback that we're getting and encouraging them to seek out ways that we might be able to improve access to GPs, so that people can get help and that in itself doesn't become a barrier for people to get diagnosed.

And a last question from me is: how do you speed up cancer diagnosis? Is there enough investment in the system, and, if there isn't, where do you want it to go?

Another huge question and probably one we can't do justice to in a very quick answer. I think, from our perspective at Cancer Research UK, we have to increase the capacity in diagnostic services. That's not just making sure we've got enough equipment—there has been investment in replacing ageing equipment, but we don't have enough equipment compared to the Organisation for Economic Co-operation and Development averages. Equally, we need workforce to be able to run those machines, run those pathways, et cetera. As we quite often say at CRUK, 'planes need pilots', and at the moment we don't have enough pilots to be able to run diagnostic services, and until we do that then it's going to be very difficult to not just improve waiting time performance, but also improve cancer outcomes more widely.

It you want to tell us more—through you, Chair—can you write to us and tell us more?

Of course. No problem.

Yes, thank you. Absolutely. Thank you, Mike. Gareth Davies.

Thank you very much, Chair. I just want to bring in the mental health aspect and what sort of services are in place for people waiting for cancer services, and, really, how that's offered to the patient, whether that's something that's internally offered through the NHS or whether it's done by a third sector organisation—Macmillan, for instance, or—. What's that experience like for the patient?

Richard. Richard Pugh.

Yes, thanks. Thanks very much. The best line I've heard this week, actually, is: 'The best way to reduce mental health is to reduce the waiting time in general'—if people are not waiting, they're not getting anxious. And what I would say in regards to psychological support is that it's done by the NHS, it's done by private sector and it's done by third sector. The challenge we've had, particularly in Macmillan, is—. We've got cancer information centres within most hospitals across Wales. Now, I don't know if any of the Members have been to hospitals recently. There are definitely—you're in and you're out nowadays; there's more Perspex in there than ever. You go in and visit and the ability to stop to speak to people and assess their needs isn't there as it used to be. And I think the key thing for us, listening to the previous debate, is that patient-centred care approach has taken a back step, and I think we need to bring that forward, and that includes mental health provision.

The key thing for us is that the mental health impact is, most probably, higher than ever, and, as Andy alluded to earlier, the system wasn't the greatest before COVID. So, the support is coming from local charities who actually have struggled during COVID to actually get the financial resource to actually do this provision on a local level. We know, across the board, not just in cancer, but other conditions, that the need for psychological support—again, a workforce issue; we haven't got those people in place. So, to answer your question, it's being provided by as many people as can possibly do it, by lots of different organisations.

Thanks for that answer, Richard. I just want to press a bit more on the experience for the patient. So, God forbid, if I'm ill now and I'm receiving cancer care, or waiting for cancer treatment, what will be offered to me at this moment in time? Will I get a visit at home, or will I have to go to a clinic or a hospital setting to see somebody? What's that experience like first hand for somebody?

It's had to change, Gareth. So, it's gone from the face to face—. Some appointments they offered face to face, some are offered virtually with health professionals. If you're lucky enough to have a cancer nurse specialist—. And we all know about key workers and how they can benefit the patients; if you've got that key worker, they've got to offer it in a different way. So, that support—from the point of diagnosis, we want everyone to have a key worker. That's a standing issue we've had across Wales in the cancer patient experience survey. But what it looks like is it's gone from that face to face to more of what we are doing here now; it's gone over to video, in that safety function, really. Is that better? In some instances, it is, for patients who are not travelling that distance, but what I would say, as a nurse myself, as a background, is that, assessing a patient face to face, you can see if they've had weight loss and others, and the non-verbal communication from patients is key, and we're hearing that from professionals.

What we've also heard from our friends and our members at Pancreatic Cancer UK is that patients' loved ones haven't been able to be in the room with them because of COVID. So, that patient then has got to go and break the bad news to their loved one, who might be waiting in the car. That's horrendous, isn't it? You've taken it on yourself and then you've got to tell a loved one. So, the experience hasn't been the greatest for patients. And I don't think that it's a fault of the system that's what's happened here, but we've got to take account of what the knock-on effect is psychologically for that patient. We want to break bad news well, don't we? And during COVID, we haven't been able to do that.

Aftercare through Teams and the rest of it, I think, is a really valuable experience that we're going to see; that's not going to disappear. But there will always be that need for that face-to-face interaction to put people's minds at ease, and for people to have a holistic conversation about their needs and their experience during cancer. So, the experience is very different. I think staff have tried their best, Gareth, to meet people's needs, but some patients will need you in the room with them and their loved one to break the worst of news, and to break it well.

I appreciate that answer, Richard, because I just wanted to know about some of the variations there with the pandemic and what it's like for people on the ground, really. So, thanks for that.

Thanks, Gareth. Thanks, Richard. Joyce Watson.

Good morning, both, and thanks for your papers and all that you do. I want to ask particularly about the support for cancer patients. I'm going to take a quote here: 'Being physically, nutritionally and mentally "fit" for cancer treatment is important to reduce the risk of side-effects and also helps patients to recover quicker'. That's your—Macmillan—report. So, that being the case, is there enough investment in organisations like yourself to help work with cancer patients and provide them with that support that they're going to need?

Thanks, Joyce. As a charity, I'm always going to say we don't have enough money, and we're obviously campaigning to get that investment in. COVID has knocked not just myself but the alliance members, because I represent the Wales Cancer Alliance, so I'll take that point for them all, really. What I would say is we're very fortunate that we haven't lost more members during this time. We provide the non-clinical support around the NHS that is just as important as the clinical aspect. What we have seen right across the board is a lot of our members have actually depleted their services as well. So, what you mentioned there is providing the right information, the right support at the right time. Well, we've got fewer people to do that. There's less income coming in that way.

So, around the clinical model of that holistic—that, at the moment, is a huge challenge for us to meet the needs anyway. It's just got harder as well. From our perspective and, like I said, charities and particularly cancer charities, there was no financial support during COVID. So, if you look at the impact on the third sector by the end of this year, it's going to be a tremendous amount of charities who have suffered from it, and sadly, we'll hear that into next year as well. Could we have more resource? Yes, please, because we will use it well to help patients, and that's not just Macmillan, that's all the third sector cancer charities in Wales.

And talking about resource, of course, a lot of people on diagnosis and through their illness and treatment also need financial support as a way of getting through, and a lot of the charities, particularly, offer that type of support with dedicated support officers. So, are you able, still, to provide those services, and are you being funded? I think local government fund as well here.

This is my subject. I feel really passionately about it, Joyce, even as a nurse. The financial impact of cancer is huge. We're going to be doing a big story about it next month, actually, and we're talking that it's close to £1,000, the cost of cancer. I won't give the absolute figure. That's a huge impact on patients, isn't it? So, you've got to worry about your health and about money, and if you're self-employed, it means a lot more. Ourselves, Maggie's and Tenovus Cancer Care, actually, we cover the whole of Wales, and by the end of this year every local authority will have welfare benefits provision in place, so, wherever you are in Wales, you can access welfare benefits provision, which I think Wales should be really proud of. But the majority of that is delivered through those three partners I've just said, and ultimately, what I would say is we employ these amazing people who listen to the hardest stories—they listen to harder stories than I did as a nurse, because they hear the medical and the financial sides. We are funding those people because the system is broken. So, patients have to apply for this money, even though they've got a cancer diagnosis. The system needs to change, and I appreciate that's not a Welsh Government problem, but I'd love your support to change that system, because shouldn't a patient just have what they're entitled to after a cancer diagnosis?

I agree, and I had a horrendous case quite recently along those lines. The other side, of course, is the emotional side. It's difficult for families, and you've alluded a little bit to the breaking of bad news well just now, but it goes much wider than that. The families need to be able to support people and to support each other. And, very often, children are in the mix as well. So, is there still enough support around helping to facilitate that support within the family household?

Similar to a previous answer, it’s been depleted with regard to what the third sector have been able to provide, and it’s the format that it's given in now, at the moment, Joyce. So, if you can imagine somebody in their own home having a conversation, and it might be on a speaker phone, with the family around them, it’s such a different environment, and particularly with PPE on. I can see you; if you are happy with my answer, you’re going to give a real facial expression to me at the moment. If I’ve got that over my mouth, the social interaction is really changed in that way, and with PPE in particular. So, the format has changed. And, as I said, hospitals are not fully open to that type of soft activity around patients. Even though we call it 'soft', it’s so important. We’re not fully open for business in that way at the moment. And with omicron coming online and the rest of it, it doesn’t seem like that’s going to change pretty soon. So, what I would say is it’s still there, but it’s being offered differently, and whether that’s offered in the best way, I’m not sure, if I’m honest.

And from me again, I’m going on to engagement with the public. Do people waiting for cancer diagnostics and treatment in Wales feel there is adequate signposting and information to help them while they’re waiting for test results—which is a hugely anxious time—and then also waiting for treatment?

I think, and again I touched upon it earlier on, when somebody’s diagnosed, if they’re in a hospital—for us, we’ve got our information centres there. They could walk in and get information. They were closed during COVID. We weren’t able to open those. So, patients had to leave the hospital and, like I said, unfortunately, on lots of occasions, they didn’t have the right leaflets to make the right phone call. And then, in between—. The key one, I think, is the anticipation of getting a cancer diagnosis, because by that time, you’ve gone for a test and you’re waiting for the results. We see a lot of people hitting e-mails online and looking for that support, and we’ve seen an increase in Macmillan with more people accessing and looking at us online, as have all alliance members. They’ve seen more of that activity online. Is there enough? We’ve got the cancer patient experience survey coming out next year, the new one, and that will be able to tell us actually what this has looked like during this time and compare it to the previous cancer patient experience survey. On the diagnostic front, I’ll bring Andy in, because he’s our expert on that side, to see what he feels about that.

Thanks, Rich. Yes, I think echoing what you say, I think there is a lot of support out there from charities, whether it’s online written information, helplines, et cetera, and we would always encourage people to be signposted to those, whether that’s Cancer Research UK or any other cancer charity. On a similar note, I think one thing we are starting to hear more of, and this is both from Welsh Government and from NHS Wales, is this idea that we need to be honest with the public about managing their expectations of how services are running right now and that things might take longer, et cetera. I think we need to be really careful with a message like that. While we think we might be trying to support and ease patients going through the system where they will have to wait longer, sadly, we know that that sort of messaging can also be quite a barrier to people seeking help in the first place. We certainly saw that in the first wave of the pandemic, where the 'Stay at home, protect the NHS' message prevented or stopped people from seeking out help from their GP. Of course, there was the fear of COVID as well alongside that, and not wanting to burden the NHS, but if we go down that road again of telling everybody all the time that the NHS is really struggling and you may be expected to wait longer, that could be enough for some people to put off getting in touch with their GP when they’ve got something concerning them. And all we’re doing there is just pushing the problem down the road and making the problem more difficult to solve later on as well.

And following on from that—it follows on quite nicely, really—the report that was published by the Board of Community Health Councils in Wales said that lots of people facing delays for diagnostics and treatment think that they’re forgotten. And that's true across the board, but probably causes greater anxiety when we're talking about cancer care. So, how can we improve that situation? Who should be perhaps taking hold of that, informing patients that, yes, it might take a little bit longer, but in some cases, they might be able to be told, 'You'll still be okay'. So, people really need to know their pathway, if you like. If that pathway is delayed, who should be taking on informing them in the best way possible to do that?

I'm happy to come in on that one. I think communication is obviously key, even when we're not dealing with massive waiting-time backlogs and dealing with a pandemic. We've heard a few times—and I know the cross-party group on cancer looked at this a bit last year—about people understanding when they're on a cancer pathway and understanding that there's a reason why they're being put through quite urgently on some of this. People can be quite surprised when they discover later down the pathway that they're on a cancer pathway. And that certainly is something that we need to do, I think, across the system; primary care, secondary care, as well as thinking about how the third sector can support that too.

I also would like to challenge a little bit this notion that it should be okay to just let patients know that they're going to face a delay, as though that's going to solve the problem, which I know wasn't the purpose of the question. But again, going back to what I previously said, it's certainly what it feels like at the moment, that the onus is being put on patients to just understand, whereas actually, what we need to be doing is more to increase capacity, and ensuring that those waits don't exist. And again, repeating a little bit, because we've seen that since before the pandemic, I think we can't use the pandemic as a bit of a smokescreen for what has been quite difficult performance levels in terms of diagnosis for some time.

Joyce, just to build on top of that, I think the community council report was exceptional, really, in highlighting that, which was bad before COVID as well. Let's be honest, the communications that we require with patients—. I'm always a little bit astounded; I know it's a huge company and we all use it, but if my Amazon parcel is three hours late, I know about it, and they're apologetic about it. I think we should more than be apologetic about it, really. If somebody is late by a day, you're adding 24 hours of anxiety, and I can't put a cost on that. And imagine what that family is feeling as well. So, we should strive, as Andy said—let's have no letters apologising for waiting times; let's make sure that everyone is treated, supported at the right time.

Thank you. Thank you very much.

Thank you, Joyce. Rhun ap Iorwerth.

Thank you very much, and good morning to both of you. I just want to look at the question of recovery post COVID and ask specifically about the innovation that needs to happen from hereon in, just to ensure that more people can be treated safely and in a timely manner. So, what's your opinion as to the main areas where we need to innovate? It could be creating COVID-lite areas or hospitals, or safe wards, reinforce how we test staff and patients so that we increase the stream of patients coming in. Andy first.

Thank you very much. That's a really important question. I think, again, there's no single answer to this, but I'll try and cover as much as I can really quickly. I think there are a few things that we can definitely do. We should be looking at new ways of treating and diagnosing cancer. I think one thing that we always come back to is we talk about recovery from COVID, but we need to get back on track with transforming cancer services as well. Certainly what we saw early in the pandemic was that some of those innovations that came through not only helped support while we were dealing with the pressure that the pandemic was putting us under, but also transformed the way that we detect, diagnose and treat the disease too. So, everything from remote consultations, as we've already touched on, to the use of faecal immunochemical testing—FIT testing for triaging of people who've got symptoms that could be bowel cancer being one of those innovations that we brought in quite quickly in Wales, and I'm really pleased we've done so.

I think there are lots of innovations in a similar guise where we have been much slower in Wales than the rest of the UK. There's something called Cytosponge, which is used for screening people—. Sorry, not quite screening, but identifying patients who have got a pre-cancerous condition called Barrett's oesophagus, and rather than requiring a full endoscopy procedure, you can put a sponge on a string in a GP surgery, that procedure can be done, and so it can completely transform the way that we are trying to detect oesophageal cancer, which is one of the harder ones to diagnose. As I say, we've seen this in Scotland, we've seen it in England, and Northern Ireland are seeking to bring it in as part of their new cancer strategy that's coming. We're not seeing that progress being made in Wales. And I can quote you another couple of examples, very specific examples of where other countries are running away with this and Wales is falling behind.

We certainly need to look at new pathways. We talk a lot about rapid diagnostic clinics; that's not really the new game in town anymore. Even in Wales, the first pilot of rapid diagnostic clinics in south Wales happened two or three years ago, and yet we're still not rolling them out across the whole—. Well, we should have rolled them out across the whole of Wales by now. The Scottish Government decided last year that they were going to set up early cancer diagnostic centres—a very similar thing to an RDC—and already have three up and running. So, they have been able to move at pace with this. Even if you look at England, they're already looking at the next model, which is community diagnostic centres, which is for increasing capacity and bringing diagnostic services more into communities to improve the way that we diagnose cancers.

Thank you for that very comprehensive answer. Richard, I don't know if you had anything to add to that.

I think, to be honest, Rhun, Andy covered the points, I would say, particularly around the quality statement.

Thanks for that. Let me ask you this then, Richard, just to perhaps try to paint a picture of how high the stakes are. We're looking potentially towards a very long period of COVID recovery to get us back to anywhere near where we were beforehand. Do you have an idea in your mind when the backlog, for starters, could be cleared if we get the innovation right, versus how long it could take if we don't?

I wish I could give the answer to that in one way, Rhun, but can I set out to you the challenges before we get to that? I think, for us, we've got to plan the recovery first, and we need the cancer plan. So, before we start to see where that beacon is, we've got a plan to get to the beacon. There's no plan for the beacon at the moment. And if I could leave you with three things before we leave this call, it's that we need that action plan because, let's be honest, people have reacted really well: we've seen the Nightingale hospitals flip up, and the rest of it, and they came on board, and the impetus and the speed and the drive to get those was in place. Where's that for cancer, please? Where are our COBRA meetings? Where's that? We need to have that impetus to say this, you know—. We've said it was the forgotten 'c', not by the workforce who were in it, but just the wider system about what's happening with cancer.

I've heard estimations that it's going to take us two years working 120 per cent to get to where we were. I don't want us to get to where we were; we weren't the best. We want to be the best for patients. So, if it will take us two years to get to back to where we were, how long will it take us to be the best, I want to know. And I think, from my perspective, what I'm hearing from patients in particular is that the system isn't in a good place for them, but we need that plan, Rhun, and we need it visible, and that will include the workforce. What's the plan for the workforce? Now, we've talked about it—I heard the physios prior—that we've clapped people on the doorsteps, but there'll be no-one to clap if we're not careful, and I think that's where we need to have the plan that encompasses the workforce, encompasses recovery, and is the beacon the workforce we've currently got can get behind as well.

Really strong answers from the two of you. What about this? I took part in a Senedd debate yesterday on cancer. The case was made again by a number of Members for the kind of strategy, or cancer plan, that both of you are calling for today. What do you think the block is? Why is it not happening? Because the Government tell us they've got it covered, that the quality statements do what we need them to do. What's the block? Is there something that you could foresee could change that could actually get Government to deliver this?

We were very proactive in the development of the quality statement in saying where it wasn't meeting our aims and what we felt wasn't meeting patients' aims, and we pushed back really hard on that. And to be fair, the Minister met with us a number of times—the previous Minister—and had made the decision. We are the first quality statement going through. Speaking really frankly, I don't want to be a guinea pig for any service. I think we need a robust plan. We know what's working in other countries. We took up RDCs; we adopted that model from Denmark. We picked it up really quickly and got that delivered within 18 months. I can't tell you where the block is, Rhun. I'm glad I stand above politics in relation to this, and all I can say is, from a patient's perspective or workforce perspective, what they need is a robust plan with the right landscape of where we get towards. From a political point of view, we can all get behind that. Everyone in Wales is impacted by cancer. One in two of us will have it, from Cancer Research UK statistics. Isn't this the one we should just get behind? And, like I said, from my perspective, it's to make sure we've got the right plan in place that people get behind that meets the needs of Wales. And I think what we're standing on at the moment is—we push back a lot on there—we're falling behind, and I know Andy will come in on that.

Diolch. Please do, Andy.

Yes, I absolutely agree with Rich. I think this is a political decision as to the approach that is being taken, which is fine in of itself, except that, as Rich pointed out, we said when we first heard about the quality statement, when we got to see drafts, Welsh Government did talk to us about it, and we made it really clear from the very beginning that this wasn't going to be good enough, and they still decided to proceed with that approach. It is linked to 'A Healthier Wales', but when you look at the actual quality statements, there is no ambition, there's no vision in there. We've talked a lot about the importance of early diagnosis, and the only thing against the main statements is that more cancer patients will be diagnosed at an earlier, more treatable stage. It doesn't tell us what we're aiming for or how we're going to get there.

I get to work with health services across the devolved nations. I've been working quite a lot looking at the Northern Ireland draft cancer strategy. We must remember that Northern Ireland is in an even worse position than Wales is right now, but they have spent a good amount of time co-producing a cancer strategy. Of course, it's not perfect—it never will be—but it will certainly move things forward. I always look back to the cancer delivery plan in 2016. Again, it really wasn't perfect; there were things that could have been a lot better with it, but I feel quite confident in saying that without the cancer delivery plan from 2016, we wouldn't have rapid diagnostic clinics in Wales, where we are at the moment. Again, we haven't quite got there, but we're still getting there, and we wouldn't have the single cancer pathway either. I think it sets the road map and it draws a line in the sand and says, 'We want to be better and this is how we're going to get there,' and identifies the things we need to do at a national level.

Now, the quality statement does include that there should be a three-year rolling implementation plan against it. It's six months since that quality statement came out, and we still have no idea what that plan's going to look like. It's not been made public. And so, we're in this kind of limbo where who knows what's really happening in terms of transforming cancer services right now, and all the focus is on what we're having to do around the pandemic rather than thinking about how we can save more lives by getting better at diagnosing and treating cancer.

Thank you both. Diolch yn fawr iawn.

Thanks, Rhun. Can I just check with you both? We'll come to conclude this session now. In terms of solutions, if you can bullet point, perhaps, for us, as we come to conclude the session, what are the priorities in terms of tackling the backlog and improving patient experience. You've talked about having the right plan and the strategy in response to Rhun's questions, but bullet point any specifics in terms of tackling the backlog for patient experience and tackling the backlog.

I think No. 1 on any bullet point list is going to be addressing the workforce gaps that we currently experience, and that's across the whole cancer pathway. We've talked about clinical nurse specialists as much as we've talked about oncology and radiology, endoscopy, et cetera. Until we have a clear workforce plan approach, not just—. There has been investment in increasing training places. We need to recognise that. Welsh Government did put, about 12 months ago, an increase in the number of training places for some of these key areas. What we're not seeing is a kind of strategic approach to identifying what we need in the future, and training places are a longer term measure because of the amount of time it takes to train somebody in one of those fields. We also need some of those shorter term measures as well. So, what can we do to upskill the workforce to make sure that we're using the current workforce that we have as effectively as possible? And until we deal with those workforce issues, we can come up with all the new pathways that we want, we can invest in all the equipment that we want, but we won't have the people to actually run it, and so we're never going to quite get to that point of improving outcomes and reducing the backlog.

Richard.

Thanks, Chair. This is something I've actually prepared for. So, for me, Welsh Government must put a plan in place—a long-term action plan—for recovering cancer services and putting them on a sustainable footing for the future. That's just essential, touching on what Andy said. So, that plan. Welsh Government must put in place an emergency plan to tackle workforce shortages, and we haven't touched on it here, but Health Education and Improvement Wales must bring forward their plans for the nursing workforce, from my perspective. So, I've heard of a plan, but I haven't seen the deadline or when this will be presented, so your support to get that would be really valuable. And then, for me, working with patients, we must urgently prioritise patient-centered care and supporting the wider non-clinical needs of patients. I think Joyce really touched upon some of the things that I'm passionate about. It's not just diagnostic tools; it's holistic, patient-centered activities around that. If we haven't got the right workforce, we can't have those really meaningful conversations that address people's needs. So, those are the three things I would ask, bullet pointed out.

Thank you, that's really clear. I appreciate that, both. Can I thank you both for your time with us today? Thank you for all your work, and thank you for responding to the consultation over the summer period as well. I appreciate that, and diolch yn fawr. Thank you for joining us for today's session. We'll send you a transcript of the proceedings. If you want to add anything at any point during that piece of work, then please do. We'd welcome that. So, diolch yn fawr iawn.

Diolch.

Diolch.

Right. With that, I move to item 4, and there are a number of papers to note—various papers. They're all on the public agenda, but various papers between various committees here in the Senedd and some correspondence with the UK Minister for Health and the Minister for Health and Social Services regarding the legislative consent memorandum. So, they're all papers that don't need particular action, but they're there to be noted. Are Members happy to note those papers? Thank you.

I move to item 5, and then in accordance with Standing Order 17.42, can I resolve to exclude the public from items 6, 7, 8 and 11 of today's meeting? Are Members content with that? Thank you. That means we'll be back into public session at 1 p.m. today, so we will now proceed in private.

Croeso, bawb. Welcome back to the Health and Social Care Committee. I move to item 9, and this is our third panel today of four with regard to our piece of work on the impact of waiting times backlog on people who are waiting for diagnosis or treatment. This evidence session is with a number of those concerned with a number of health conditions.

I know that you've all been checked for Welsh translation, but can I just do one final check myself? Can I just ask the translator to say something to make sure that there is no issue at all? If I could ask you to put your thumbs up if you can hear the translator. There we are. Mary can't hear, I don't think. Mary was nodding, so she can't hear. So, Mary, can I just ask if you can just check the globe at the bottom and make sure that it's on 'English' and I'll ask the translator to say something else. There we are. And, Elin, could you hear as well? You might not need translation.

No, I don't require translation.

That's it. Lovely. Thank you ever so much for that, I appreciate it. Right. The first set of questions this afternoon is from Rhun ap Iorwerth.

Thank you very much. Good afternoon. It's to Elin Edwards from the RNIB that these questions are directed. Just first of all, can we have an overview from you of where we are in terms of the waiting times for ophthalmology services by now, and perhaps compared with the situation pre pandemic also?

Thank you very much for the question. The situation with sight loss in Wales is an interesting one. If I could just give you some context as well, the services when it comes to eye care are some of the busiest in Wales. We see 11 per cent of all out-patient appointments and that's something that's going to increase over the next 20 years. Interestingly, since 2018, eye care in Wales has taken a risk-based approach, and it is the first service to do so. Patients—I apologise for the English, but I will be using it here too—every patient has a health risk factor, which shows how serious their condition is. The highest one is HRF1, and if you have HRF1, that shows that you have a serious condition and it's vital that your personal date is met. Very broadly, if you don't meet that, then the patient can lose their sight significantly, and that shows how important, therefore, that treatment is.

As part of that, the target as set by the national eye care measures is that 95 per cent of HRF1 patients should be seen within the clinical waiting time—that target will be a individual to each patient. Health boards have to report back monthly on those. The concerning thing for us at the moment is the fact that more than 70 per cent of the patients in the system are HRF1 patients. So, that is a significant amount when we look at the system, and over half of the HRF1 patients are waiting for longer than the acceptable time for their appointment.

So, the measures show us in a fairly unique way how significant the waiting lists are. There was a crisis before the pandemic and you won't be surprised to hear that there has been a significant increase over that period as well. So, we know that sight loss has happened, but we haven't seen the magnitude of that yet. So, that's the situation in terms of waiting times in Wales.

Thank you very much. And I should thank you also for the briefing information you sent in advance, noting some of those figures. What measures are being undertaken at the minute in order to understand how much worse things have become, because some of the figures that you have quoted are very concerning? If it is essential that people in that high-risk layer keep to their appointment and that so many of them are failing to meet that, then that means that a significant percentage are likely to lose their sight. So, how do you measure how bad things have become?

I think we would expect to see the situation become clearer over the next few months, as patients start going back to clinic. What concerns us as well is the fact that the measures that are published every month show great variation across health boards. So, one of the things that concerns us, for example, is that one third of the HRF1 patients in Cardiff are waiting over their target time, but in Cwm Taf Morgannwg more than two thirds are waiting to be seen. So, again, it's very concerning wherever you are on that boundary, but there is a need to explain why there's such a difference in terms of those waiting times. The situation is similar across Wales as well.

Just to come back to your point about understanding how many people are waiting, one of the concerning factors is how much patients understand and how much of an impact that waiting is going to have on them. They won't know whether they are HRF1 or not, and that is a concerning factor. People are used to having to wait, and we do hear from day to day, 'I'm waiting to go to the clinic to ensure that the situation is all okay when I see the doctor'. But, again, sight loss—it's [Correction: 'often'] not painful—and having to wait too long can have a significant impact on their lives.

One of the interesting points that we've seen is an increase in those contacting the RNIB regarding cataracts. Traditionally, cataracts are a low-risk problem, and they're something that we can treat. But we are hearing about patients who are waiting so long that a lot of their sight has gone. We also hear about patients being sent on to the vision rehabilitation specialist service, which is a community social care service. They shouldn't be waiting, and that does show the impact of a very long waiting time, which then creates a very serious situation simply because of the wait.

Given that we have this risk-based way of looking at the risk that these patients face, is there a way of prioritising people in a different way, because that's what we see happening in other services within the NHS—an effort to prioritise things in order to see who needs treatment most urgently? Do we need to triage that in a different way with ophthalmology patients too?

That's the challenge when everybody become a priority. If COVID has done anything good in terms of eye care, one thing that we have seen is the Government accelerating the changes taking place in the community. The hope is that high-street optometry will be more of a triage system so they can see more people closer to their communities, and that's something that we welcome and we've also been pushing for that for a long time, but, because of the pandemic, that's started to happen.

We obviously believe it important that that should happen quickly. With these major changes in optometry, it's important that they're communicated to the patients. The hope is that that will start to release more capacity in secondary care, but, also, there are broader problems that need to be identified and resolved.

My final question, therefore: do you have confidence in what you are seeing being done by health boards and the Welsh Government—that they are doing what's needed in order to invest in increasing capacity in order to deal with the backlog that has grown? Are you happy with the level and urgency of the investment that's being made?

I think that, necessarily, because of the scale of the problem, and because of the terrible numbers I mentioned earlier, that this has to be seen as a priority. It's also something that's not going to go away, and I mentioned earlier that we need to look at the urgent things, but the number of those living with sight loss is going to increase as well, so we need to resolve the situation when it comes to capacity.

We do welcome the changes that are happening in terms of moving towards the community, as I mentioned, but that needs to happen urgently. There are differences across health boards. We need to understand those better and the Government needs to understand why those differences exist. I would suspect that those health boards that have started to do more in the community have shorter waiting lists, but we need to see that detail. We know that it's a very complex issue, but we need to tackle it, and we do welcome the changes that are happening with optometry.

But, as it stands, there are people out there who face losing their sight because of the longer waiting lists.

Yes, that's a fact. We know that people have lost their sight over this period, and we don't know how many, but what we are hearing, as the Royal National Institute of Blind People, is the emotional impact that that's having and which is continuing. For example, we have an eye clinic liaison officer service, which is something that we've been operating for more than 20 years across the country, and we know that the kinds of things that people contact them about show how essential that service is. We also have a counselling service, and they've been very busy, and we have a waiting list for that of more than nine months. So, it shows that the need does exist.

And, as we know—one other thing to mention—the impact that the pandemic has had on people living with sight loss is unique, perhaps. When you think about moving around our towns and social distancing, and taking public transport and so forth, many of these challenges can be unique to people with sight loss. And we have some research that I might be able to mention, which shows the impact that this has had on people emotionally: 56 per cent of people told us that they feel anxious about the future, and 47 per cent of people said that they feel isolated from other people because of these changes.

We know, therefore, that this is going to have an impact on mental health care, and that's also a part of this package that we will need to better understand.

And may I invite you to share that information with this committee? I would be grateful. I'll leave it there. Thank you very much, Elin.

Thank you, Rhun. I omitted at the beginning to ask members of the panel to introduce themselves. So, perhaps when you do speak for the first time, you could just say who you are and who you represent, if that's okay. We've just heard from Elin Edwards, who's the external affairs manager for RNIB Cymru. Mike Hedges has the next set of questions.

Diolch, Cadeirydd. My questions are for Cymru Versus Arthritis. First of all, can I thank you for all that information you sent to me? I do read it and I find it very helpful. Now I'm going to ask you some questions on it. One of your requests was that patients were kept better informed about where they were in the system and when they were likely to be seen, and what was happening. Has any progress been made on that?

Thank you, Mike. For the record, I'm Mary Cowern, Wales director of Versus Arthritis. And, to answer your question, I think data is very, very difficult at the moment. We know that there are a vast number of people waiting on that trauma and orthopaedic list, and that's growing continually. We're seeing increases each reporting time, and the number of people waiting over two years has drastically increased. And we're talking about people in extreme pain that's affecting their whole, entire lives. What we're not clear about is how that communication is happening. It's very patchy. We've already heard Elin mention there's some good practice going on around the different health boards, but it's not consistent. There are some good interventions happening, and good projects happening, particularly one in Hywel Dda now, that are looking at how they can reach out and support and contact their patients on the waiting list.

But that element of keeping people regularly communicated is so important because there's nothing else worse than sitting on a waiting list wondering, hoping, when that phone call, when that letter's going to come when you're in extreme pain every single day. And it is bleak, and I'm not ashamed in saying this is a really, really bleak situation for people in despair, and it just doesn't sit alongside prudent healthcare at all. We've got people suffering out there.

Yes, I'm well aware of that, if only because some of them contact me and I write to the health board accordingly.

Absolutely.

But, as you're probably aware, Swansea Bay University Health Board have now come up with a plan where they're going to use the Neath Port Talbot hospital, which is based in Baglan, as a site where they're going to carry out most of this type of work. Do you welcome that, and is that something that, if it works, might be able to be spread around Wales?

Yes, certainly. We know, from conversations with the royal college as well, that this is one of the things that we're quite keen to put forward—having central sites, safe sites, green sites, where these operations can be performed. And we know, from talking to patients as well, that they just want their procedures, they want to get treated, and I think they're quite happy to travel. It's then how that aftercare happens closer to home that becomes really important as well. But I think what we need to make sure is happening is innovation, such as Swansea, like that, but they're evidence based and then other health boards learn from them as well.

What's happening with pain management? I have a view on this, which—you may tell me I'm wrong, but people can do something themselves, can't they? They can lose weight, they can exercise, they can reduce the pressure on their joints by having less weight pressing on those joints. Should we be doing more to get people to do those sorts of things? Because my experience is that people treat their body less well than they treat their cars.

I think it is a really important point. Self-management is absolutely key, and it becomes even more important for people while they're waiting as well. But that's where that signposting and communication piece is really important. A lot of people don't know how to self-manage and they do become somewhat deconditioned sometimes while waiting, especially as that wait grows and becomes longer as well. So, I think making sure that people are supported in the interim is absolutely key, Mike, and I agree, self-management—. But understanding what to do, how to do it and how to do it safely also is a key thing on this as well.

Your knee is going to be a lot better if you're carrying around 10 stone rather than 22 stone. Whatever's wrong with it, the amount of weight you've got on it is going to make a difference—the more weight you have, the more problems you're likely to have. And I think we—and I say 'we'; I include you, myself and everybody else—need to be pushing this, that prudent healthcare involves you having some responsibility as an individual, not 'I'll go and see the GP, and I'll go to hospital, they'll carry out a procedure, then I can go back to living the life I currently live.' We've got to get people to accept some responsibility for their own health. Would you agree?

I would agree, but what we must do as well is give people the tools to do that. There's a big education piece here and a big support piece here for patients. But I do agree that keeping people well and as healthy as we possibly can to avoid them coming onto those lists in the first place is an absolute imperative. However, we also have a problem now to fix all those people who are on those current waiting lists as well.

Well, let's start off with the premise that there's no problem, and all the money that's needed is available. What are the other things in the system that are holding back treatment?

Ooh, that's a magic question that I think probably my health professional colleagues might be better off explaining, but I think, for me personally, in our perspective from a third sector organisation, it's that holistic approach—so, signposting to organisations that might be outside the NHS as well who can provide that support and that information. So, peer support, self-management support. But I think also, as well, if we look at it in a holistic way, it's not just about the self-management side of things. It's enabling people to remain in work—so, benefit advice and support as well—and actively supporting them to remain in work through Access to Work and interventions like that as well.

Okay. Thank you very much. I really do feel, though, that we've got to get people to do more themselves. This idea that everything can be done by some surgeon somewhere and it will all be okay is a mindset that we, you and the health professionals need to get across.

Absolutely, Mike, and I think this is a collective thing that we all need to work together on.

Thank you very much.

Thank you, Mike. Joyce Watson.

Thank you, Chair. I just want to come in on joining up those pieces. We did hear early on from physiotherapists and pain managers, and it would be worth you giving us a little bit more detail on how those are joining up and how they are connecting in your view, and whether there are disparities in that join-up across Wales. It would be helpful for us to know that, and also, in terms of prioritising those people who do need their clinical intervention, how we can go forward with that.

I think, in terms of pain management, there is a slight disconnect, quite frequently. But then that happens right across the NHS anyway, unfortunately. I think we do need a more joined-up approach, particularly in treating people with musculoskeletal conditions. I think that's where the musculoskeletal and arthritis framework is going to be very, very important in drawing that together, but that's months ahead yet.

I think we have an issue of potentially, again, a bit of a postcode, where there are some really, really good services happening within health boards, some really good joined-up approaches, but then in other areas that's—. So, for people waiting on, particularly, the orthopaedics list, I think there is a place for pain management, but that shouldn't be isolated on its own—it needs to be joined up with that self-management approach as well. And I think that self-management piece also needs to sit alongside the pain management, so it's not just around medication and clinical support.

I think, in terms of priorities, we do need to see a clear, urgent plan that's a really focused plan that makes health boards comfortable in delivering what they need now to deliver. There are different challenges in different areas, and I think having that common approach of sharing and supporting across health boards, but sharing best practice and learning from each other as well, is hugely important. We touched on the Royal College of Surgeons, who are looking at, and quite actively proposing, clinical and surgical hubs as well and centres of excellence, and I think that's a really good move forward. But we need to bring that system together within a clear strategy and bring all the people who are involved in making that a success together to work through how that happens.

I think having some strong evidence base around what's working helps as well, because I think, currently, data and evidence are a little bit patchy at the moment, but I think improving that whole pathway, so that once people fall in to that waiting list there's a very strong, very clear pathway of the support and interventions they have until they come to that surgical time.

Joyce, have you got further questions?

Yes, I'm moving on now, and my questions are to the British Heart Foundation and much along the same lines, but being sector specific, if I can put it that way—health specific, I suppose. What are the lengths of the delays for heart procedures and surgery and what are the implications for those people who are waiting for treatment and access to treatment?

Who's going to answer that? Gemma, are you going to come in on that? Do you want to just introduce yourself as well? Lovely.

Sure, yes. Sorry, I'm Gemma Roberts; I'm the policy and public affairs manager at British Heart Foundation Cymru. So, around the length of delays that patients are waiting, what we're seeing—so, the most recent data is from September this year, and we are seeing the largest number of patients that are waiting for diagnostic tests. So, for diagnostic endocardiogram—. I don't think I said that right—diagnostic echocardiogram—are waiting—. So, there are around 14,000 people on that list at the moment and 7,000 of them are waiting over eight weeks. So, those are huge, huge numbers—the most that we've ever seen.

Then, in terms of patients waiting for treatment, we also have the largest number of patients waiting for treatment that we've ever seen in Wales. So, there are 25,000 people on that list as of September 2021, and one in four of those are waiting six months. That has improved since 2020, when 44 per cent of people in September 2020 were waiting more than six months. So, we are seeing improvements in terms of the length of time people are waiting, but the number of people who are waiting is the biggest that it's ever been.

And we're also seeing an increase in referrals—we are seeing the largest number of referrals as well. So, we've got a huge number of people in the system, but then we've also got the largest number of people coming into the system as well, so it's not showing any signs of slowing down.

In terms of implications for patients and the impact that that has on the patients who are waiting, we do see deteriorations in conditions. So, for example, heart failure, if heart failure is not diagnosed and treated as soon as possible—. So, clinicians say that around one third of heart failure patients get better, one third of heart failure patients stay the same, and one third of patients get worse. We’ll see a skew in these numbers if heart failure patients are not diagnosed and treated as soon as possible, because heart failure needs management if people are to live a full life and be able to manage their condition.

We also see, with conditions like angina—so, if somebody has angina, they are at an increased risk of a heart attack unless they receive treatment. So, the longer somebody is waiting with angina, the higher their risk, the increasing risk, that they’re going to have a heart attack. So, it’s vital that these people are seen as soon as possible and that the waiting times are shortened much shorter than that six months that some people—a quarter of people—are having to wait.

And then, from patients we’ve spoken to, there are significant mental health impacts as well. So, we’re speaking to patients who, having their treatment delayed—as far as they’re concerned, it seems indefinite. They don’t know when they’re going to get their treatment, they don’t know whether or not their condition is deteriorating, they feel like they’re not being given the information they need to wait well. I think that's something that we would really like to see, for patients to be given the support that they need and the information that they need to reduce some of that anxiety for themselves and for their families.

That was my follow-through question, so it's good. So, you’d like to see it. We’d like to see it. I was going to ask you where you think it is. How bad is it, in other words, or how good is it? Are there variations?

Is that in terms of support?

Yes, support for people who have a treatable condition, they're on a waiting list, they're getting anxious, which isn't a good thing if you've a heart problem anyway and, of course, could lead on, potentially, to a stroke or other factors running alongside it.

So, we are aware of pockets where we think there is support. So, there are instances, sometimes, when a rehabilitation team, as part of sort of prehab—so, before treatment—will call up patients. But we’re not aware that it’s an all-Wales programme—we’re aware of it happening sporadically within different health boards in different hospitals.

Unfortunately, patients that we have spoken to didn’t feel supported. They felt that they weren’t given the right information or any information at all—they felt they were very much left to their own devices, and I think it's something that patients have raised with us as well, that all of that is compounded by the fact that families aren’t allowed into hospitals in the same way, so the families don’t feel as informed as they might have been if they were able to accompany their loved ones to their treatment and to their appointments. So, yes, what we’re seeing is that the support isn’t available.

We do understand there isn’t capacity and really difficult decisions are having to be made, but, because of that, I think we need to look at innovative ways to work around that and for people to at least try to offer some support to patients. There is an example in Scotland, where Scottish Government have implemented a computerised cognitive behavioural therapy programme, and that programme has got a specific heat disease section. It can’t take the place of in-person support from a care worker, but I think we just need to be looking at these other ways that we might be able to provide at least some support for patients and their families that are waiting.

I should mention as well, there’s also the BHF helpline that’s available to patients, and signposting to these resources. Even if the resource doesn’t exist in the NHS, to be able to signpost to these resources is incredibly important for these patients.

Absolutely. And if you’ve got details—with your permission, Chair—about the case study that you did in Scotland and the information, that might be useful to us to look at it.

Of course, there’s a backlog, you’ve just talked about it, and with a backlog there are also priorities that have to be made, particularly with cardiovascular care. So, have you got any suggestions on the way that that priority and risk should be dealt with, in terms of reducing the most urgent, or limiting the time the most urgent receive their care?

Yes. So, there are good examples. I think, across the health service, clinicians were forced to innovate. So, there are actually pockets of examples in different health boards where clinicians have been able to innovate and have been able to try and prioritise patients. So, there was an example in Aneurin Bevan where cardiac clinicians, they spent a lot more time on triaging referrals. So, spending a lot more time on those meant that they were able to more accurately prioritise patients based on clinical need and risk. So, spending much more time on triage seems to be something that's worked really well over there.

And then, there's an example in Swansea bay whereby heart failure services were moved in Gorseinon hospital to be provided with multidisciplinary teams, so that patients with heart failure could continue to receive the services that they needed throughout the pandemic—to prioritise those patients with heart failure. Something that's incredibly important is that, within cardiac care, there has actually been a tendency to prioritise acute care, and in some instances, that has meant that that's trumped elective care. I think it's important now that elective care gets back on track, so that we—. Because elective care, I think the name is quite misleading: elective care is not a choice; elective care is life-saving treatment for people. So, I think it's important that, going forward, elective care is not sort of trumped by acute care. You know, both are saving people's lives.

And finally from me: do you have enough confidence in the Welsh Government and also the local health boards in terms of the investment that they're putting in to sufficiently cover the recovery and the cardiovascular services in terms of the needs that you've just expressed? And, of course, that investment is not just going to be revenue or capital, but it's going to be people as well.

Yes. So, at the beginning of this year, we did see a quality statement for heart conditions and we're really supportive of that—the ambitions in that are really good. But what we need to see now is that quality statement be implemented, and we need to see investment in workforce and long-term workforce planning. The problems that exist in cardiac care are not short-term problems; they're long-term problems that have been exacerbated by the pandemic. So, we need to see long-term solutions and that includes sustainable workforce planning. There's a huge bottleneck in diagnostics and we need to make sure that there's investment in the diagnostic workforce, particularly cardiac physiology, to allow for those patients to get through the system a lot quicker, and that requires a lot of long-term investment.

Then, I think there's definitely something around data. The data is incredibly poor for cardiac services in Wales—we just don't have enough. So, we don't have enough data to identify where we're doing well, where we're doing badly, and as much as we want to invest in services, if we don't have that accurate data, we don't know where to invest and we don't know what services need to be rolled out across Wales. So, we need the data to be able to see that, and that's a big project as well. That's a lot of investment and time and resources into providing adequate data, so that we can see exactly where services are working and where they are not, so that we can actually drive improvements.

It's just about recognising that there are a lot of problems that pre-existed the pandemic. So, we had a lot of variation in care, in cardiac care. So, across Wales, really, really vast variation in the care somebody might receive across health boards. There has been a commitment on an all-Wales cardiac pathway. I think we need to see that implemented, so that we know what best practice looks like and that health boards are using this best practice so that all patients are getting the same care.

So, I think it's definitely about capital investment, also about the right number of people in the right jobs—and that's cardiac physiology of diagnostics and specialist nursing as well—and then, also, investment in the data to be able to see exactly how we move forward with cardiac care in Wales.

Thank you. Thank you very much.

Thank you, Joyce. Gareth Davies.

Thank you very much, Chair, and good afternoon, everyone. My questions on this will be directed to Joseph from the British Lung Foundation and Asthma UK. What impact has the pandemic had on specialist care for people with lung disease and respiratory problems? One example I can probably think of is the access to specialist breathing equipment through lockdown measures, as they're seen to exert more particles into a room, a bay or ward or whatever, and the increase in PPE equipment. So, with all those barriers in mind, what sort of impact has that had—? Excuse me, I'll start again. What impact has it had on patients in hospitals and waiting lists and things?

Thank you, Gareth; thank you for interest in this area and thank you for that question. I'm Joseph Carter, I'm head of devolved nations for Asthma UK and the British Lung Foundation—I have one of those very long titles that we have. It's great to be here.

I'm going to put it in context here: we're talking about one in five people across Wales are affected by a lung condition. One in five of your constituents—huge, huge numbers of people. And most of the people will be living with their lung condition, they're quite happy in the background, not really needing much from secondary care at all, having almost all of their interaction with primary care and self-managing, which was in my introduction earlier on. Those have got big numbers, like 314,000 have asthma, 74,000 people with chronic obstructive pulmonary disease and a whole range of other lung conditions as well, and they've been affected in different ways.

First of all, as COVID has been a respiratory pandemic, the respiratory workforce was one of the first to get pulled out of their normal services and put into COVID wards, doing the innovations that have kept people alive in a very vulnerable situation. And that work was absolutely needed and our nation has benefited from it, but they're also one of the slowest to get released because their work was needed there. So, there was a slow coming back and restarting of services. And what that meant was, for the people needing secondary care support from a consultant, we saw a huge jump in waiting lists. Pre pandemic, to put in context, 90 per cent of people would be getting seen by a consultant in less than 26 weeks. That's just about on target; it varied a bit. We had virtually no-one, really, waiting more than 36 weeks. The middle of last year, we got to August last year, and that figure was up to only 58 per cent of people were actually seeing someone within 26 weeks, and a huge growth in those people waiting a lot longer than 36 weeks.

What's happened in the last year is we have got better. Services have started to recover; they have crept back up. They're nowhere near as good as they were pre pandemic. The latest figures available publicly would suggest that about 81 per cent of people can see a consultant within 26 weeks—that was from September. So, we are going on the right track and month-on-month improvements there. But that itself masks the greater challenges the services have because, actually, in reality, most aspects of respiratory medicine do not require a consultant intervention; they do not require the measure that's being recorded most by health boards. The biggest challenge that we've got around waiting lists are around waiting lists for diagnosis, taking you onto the issue that Gemma raised; the waiting list for rehabilitation, picking up some of the issues that Mary raised in the arthritis world.

Thank you for that comprehensive answer, Joseph, and you've stolen my thunder there in one fell swoop, because you've—

Sorry.

—covered most of my questions there, but—

No need to apologise—

No, don't apologise, it's fine.

—it makes us move quicker.

You're covered all the bases there. But, just as a final one, I just want a view, really, on whether you think the Welsh Government's COVID recovery plans give enough commitments to restoring respiratory services. I know you mentioned that rates are improving and getting better, but what do you think we need to do to get over that final hurdle and get us back to pre-pandemic levels?

In terms of general respiratory medicine, I don't think there has been enough focus in the recovery plans at all, and I think, really, since the initial stage of COVID, we've seen people with an initial interest and attention on lung health because of COVID being seen as a respiratory virus, but as time's gone on, actually, that attention has shifted, there's been a lot more attention on the cancer community, in terms of the big numbers there, and there hasn't been so much of a focus on respiratory medicine. I think that is a challenge for us. There hasn't been enough of a focus on rehabilitation in any of its guises, be it respiratory, cardiac, stroke, et cetera, and I think that's a huge mistake as well. So, these issues need to be taken seriously.

We need the quality statements. We need health boards to take this stuff seriously. We know some health boards are, and there’s some very innovative—. Aneurin Bevan have actually recently funded some new diagnostic hubs. They have actually brought in an out-of-hours respiratory team as well, which has been very helpful. But many of the health boards haven’t, and many of the health boards' respiratory services are on their knees. So, there’s a long way to go, and I do worry what’s going to happen this winter. I do worry about this very frail, deconditioned group of people with a whole range of lung conditions who have been silent and invisible to the public eye because they’ve been so careful, hiding behind the scenes, shielding, whilst actually they are getting frailer and frailer and are going to really suffer this winter.

I appreciate that, Joseph. Thank you.

Okay. Joyce Watson.

A final set of questions—lots of them have already been answered, so if you’ve got anything else to add about the importance of patients being informed about what’s happening with their appointments, their treatment, and the advice and information, whether that’s easily accessible, to help those patients to manage their conditions. So, if anybody’s got anything to add, and then I’ll move on to the very final question.

There we are. Elin Edwards.

Thank you. Just something I wanted to add on, really. I mentioned earlier patients not knowing their own risk factor, but one of the things that the pandemic has really shone a light on is the NHS’s inaccessibility, particularly when it comes to people with sensory loss. We have the all-Wales standards for accessible healthcare, which were launched back in 2013, and we know that health boards just aren’t adhering, nor are they held to account over it. And the Senedd’s Equality, Local Government and Communities Committee’s inquiry into COVID-19 found specific deficiencies when it came to the provision of information and guidance in accessible formats. I think maybe historically it’s been seen as a 'nice to have', but it’s become a patient safety issue. We were hearing reports of people receiving shielding letters and invitations to vaccinations in inaccessible formats. It’s just not acceptable, and I just want to put that on record, too.

Thanks, Joyce. Do any other Members—? Okay, Joseph. Joseph Carter. I’ll come to you afterwards, Mary.

Just to come back on a positive, if I may, I would like to pay tribute to the Welsh Government’s investment in the new asthma and COPD apps that were funded during the pandemic. This was a long-standing promise as part of the respiratory care delivery plan. And actually, whilst it’s not for everyone, coming back to that point about self-management, for that younger, more technologically savvy audience with asthma and COPD—milder people, rather than severe lung conditions—if we can support them through an NHS-branded device to actually help them monitor their condition—not lose their paper action plans, not lose their paper delivery plans—that is a really innovative step, and something that we’ve not seen in the other nations that I work in. And it’s a really positive thing. So, we need to get that roll-out better publicised, yes, but it’s a very good platform, and I hope that investment can continue and be replicated for other conditions as well.

Thank you. Joyce, I thought it was worth drawing attention to some work Hywel Dda have been doing here as well around their waiting list support service. They’re creating that single point of contact system for people on waiting lists that provides that advance information signposting and services around well-being there, because I think it’s really important that we note that one size doesn’t fit all. People need different levels of information, different levels of support. But what that does is that it creates that personalised contact again between the health board and the patient themselves, and it gives them those resources. So, around the time frame for their surgery, providing that single point of contact. That’s really important. And that somebody knows who to ring when they’re in crisis, particularly, as well. It’s got the self-management support advice on there as well, and advice around what to do when their symptoms worsen. So, I think picking up on these interventions is a really, really important approach, but again, sharing that across other health boards. This works, and this needs to be rolled out further.

Thank you, and thanks for highlighting good practice in my area. It’s always welcome.

There we are. Gemma Roberts wanted to come in as well.

Diolch. I just wanted to add that we’ve seen a huge move towards virtual services in terms of prehabilitation and rehabilitation. Traditionally, these would be offered face to face, and now we’ve seen a move towards virtual services. I think it’s really important to point out, in terms of accessibility, that it’s incredibly important that, actually, we’re not entirely reliant, going forward, on virtual services or face-to-face services, that a hybrid model for prehabilitation and rehabilitation is really important to make sure that those that don't have access to the technology are still able to access the services that they need to. In terms of advice and support, there's loads available, and the British Heart Foundation's got a really good hub for rehab, but it's only good for those who can access it. So, it's really important that those face-to-face services are able to resume and that patients are offered a hybrid model so that everybody is able to access these services.

Thank you, Gemma.

And my final question is—and probably Mary might answer, we'll wait and see, more than others: we've heard from the royal college of GPs that long NHS waiting lists are driving people into paying for private treatment, and I'd just be interested to hear from you whether you're going to back up that evidence. Finally, is there any suggestion—there's no point in asking the question without a reason—that that is impacting on the widespread available care, or the equality of access to care, for other people who can't pay?

It is a significant worry to us, Joyce. We are seeing the creation of a two-tier system here among people who can afford to pay and those who can't. We're hearing from a lot of our service users who are becoming quite desperate, and they're taking loans out to go private. You will have seen probably in the press most recently a lady who went to Lithuania to have her knee replacement, because she was so desperate. She just couldn't wait any more. And we're hearing more and more about this, which is really worrying, because people are being told they could be waiting up to five years. They just can't wait, and they are driven to desperation. So, it's really, really worrying. I don't know what the answer is, other than us really grabbing and tackling these long waits and supporting people while they're waiting.

Thanks, Mary. Others can come in on this, but can I just ask perhaps a final question as well? Because today's session has been very much focused on a set of questions to particularly an organisational person, but you will have heard each other's evidence during the course of this last hour, so do any of you have comments on what others have said, either strongly in agreement or disagreement? Or whether there's a comment you'd like to make on each other's evidence this afternoon, as well as if any of the other three of you want to come in on Joyce's question as well. Gemma Roberts.

Thank you. Just that I've noticed the similarities with problems across elective care and elective treatments. That's been a massive problem in cardiac care and I've noticed that Elin, Mary and Joseph have mentioned this problem in their respective areas. So, I think a focus on elective care moving forward and making sure that the treatments that people desperately need are being brought forward and those waiting times are shortened around elective care.

Thank you. Mary.

I think for me, a common theme came across all of this around data as well, and having better data, so we can truly understand the issues and the impacts.

Thank you. Any final comments, Elin or Joseph?

Yes, absolutely. Two things came through for me. Definitely a comment about needing national workforce planning; that's across the board. Access to rehabilitation as well; that integration with social care needs to be there in terms of planning. For me as well, communications when you might have multiple conditions. That's also worth considering there. And data is an interesting one. I know certainly we're unique in terms of having the eyecare measures, and there might be something to be learned there. They're certainly not answering a lot of the solutions, but they're giving ophthalmology quite a stark picture. So, there might be something to be learned there, too.

Thank you. I appreciate that. Joseph.

Thank you, Chair. I think a similarity here is the issue of primary care. Actually, the more we can do in primary care to take the burden off secondary care to support people earlier, be that in pain management, be that in actual good diagnostic services, access to medications directly from primary care—. There have been some great innovations, actually, on the respiratory front—medications that you would have typically had to see a hospital-based nurse for that we can now have posted out to someone, and primary care have been a lot more involved. But I think the challenges that we all face in terms of seeing our own GPs are significantly magnified with someone with a chronic condition. I think the more we can do to take pressure off the individuals, and off secondary care, by expanding and restarting primary care, be that in terms of how we utilise primary care nurses—we can still have that virtual mix, it hasn't just got to be face to face. But the more we can do in primary care to alleviate these pressures I think would help everyone, not just the four organisations here, but also the wider Welsh population as well.

Thank you, Joseph. Can I thank you all for attending today? I appreciate there have been periods of time where some of you haven't been able to answer any questions or comment, but thank you for your time. I know you're all busy people. Thank you also for your consultation responses to our priorities consultation over the summer—that was much appreciated and it has actually helped and fed this piece of work that we're dong at the moment as well. So, diolch yn fawr iawn, thank you very much. We'll send you a transcript of proceedings; please feel free to add anything to what you've said today if you think it's helpful towards our inquiry. Thank you very much, diolch yn fawr. We'll take a 10-minute break, and come back between five and 10 past two.

Croeso, pawb. Welcome back to the final session today in our piece of work in regard to the impact of waiting times backlog on people who are waiting for diagnosis or treatment. And this final evidence session today is with a number of organisations representing the patient's voice. So, if I could, first of all, just ask you to introduce yourselves for the public record.

Good afternoon. I'm Alyson Thomas. I'm the chief executive of the Board of Community Health Councils in Wales.

Good afternoon everybody. I'm Kate Young. I'm the chair of the Wales Carers Alliance.

Good afternoon everybody. I'm Helen Twidle. I'm a health and social care policy officer for Age Cymru.

Thank you all ever so much for being with us this afternoon. Can you first of all—. If I can ask the first question, what concerns do you have around waiting times for dementia assessment and services? And don't, please, feel you all have to answer, and if you do just want to come in, just lift your pen or your hand and I'll know to come to you first. So, who would like to address that question? There we are—thank you, Helen.

With regard to dementia, I'm not sure of the details of the totals of how long it's taking now, but I do know of lots of issues that we're hearing about from our advocacy services where it's taking a while to get a diagnosis. There are some circumstances where a diagnosis has been given and then changed, meaning that that patient can't then get support whilst arguments and discussions are going on around the care for them. And until someone's got a diagnosis and until they've got that far, it's really, really hard to get the right forms of support for them and their carers. The waiting times have been growing, as we know, through the pandemic. With regard to dementia, there are more and more people being diagnosed, and the projections are that that's going to increase quite a lot in the coming years.

So, our concerns are really quite large in terms of how people can access the support that they need, and how their carers can get the help that they need as well to care for people well. We've had circumstances where people with dementia haven't been able to get a care package, and that's meant that they've ended up having to go into residential care rather than being supported in the community, which is obviously what they would prefer to do. So, there's a lot to do, but I'm not sure of the numbers.

Thank you, Helen. I'll go for a second question, but please any other panel members, feel free to come back on the first as well. In terms of the waiting times statistics, is there any information that you would pull out in terms of the demographic of those who are waiting in terms of their age? Is it likely to be those over 65, and to what extent? Who would like to address that? Alyson.

I think from our point of view, the areas and the services that we are hearing most about are the waiting times in areas that do tend to affect older people. So, we hear most from people who are concerned about being on the orthopaedics waiting list, waiting for eye care services and, obviously, that does affect a lot of older people, as well as people living with lifelong conditions such as diabetes who are not on a waiting list as such, but are sometimes having difficulty getting the routine maintenance-type appointments that help them stay healthy. So, those are real areas of concern for people who are contacting us.

Thank you. Kate Young.

Yes, from a carers' perspective, I think we're seeing issues with a demographic, not just age, but also different client groups. So, there are very vulnerable groups—people with a learning disability, for example—who are waiting quite a while to be able to get into specialist services, because a lot of those specialist services were put on pause in the last 18 months and haven't yet restarted. So, there are waiting lists for operations and procedures, but there are actually waiting lists for reviews, checks and therapies that are critical to the preventative agenda. So, we're seeing it from all sides within the carer field, that there's an issue for waiting lists, not just age related, but also in terms of different demographic vulnerable groups.

Alyson.

Yes, I would agree with that. One of the biggest areas of concern that people raise with us is access to child and adolescent mental health services. That's been a concern pre pandemic and has been exacerbated during the pandemic. So, lots of people contact us in relation to that service too.

And to what extent are people paying for private treatment? Is that an experience that you come across, Kate Young?

Yes. That is definitely an experience. We're seeing some carers and families looking to go down the private route in order to make sure that they can manage the situation, because waiting is frankly not an option for them. For some of these families and individuals, when you're waiting for such a long time, if you're caring for someone and that person is in chronic pain or the situation is getting worse, then actually it's an intolerable situation for families. We're also seeing it for carers, of course, who may have a medical requirement and are actually essential in terms of being able to offer support to somebody, and when we look at some of the older demographics, particularly, as Alyson touched on, people needing orthopaedic procedures and things, if you're having to wait for those and that stops you from being able to fulfil your caring responsibilities for the person you're looking after at home, it's just an impossible decision. So, we have got examples where carers and families together have actually decided to go down the private route, just because they have to, in order to not hit a critical and crisis situation, should they have to wait much longer. Yes. So, it's definitely happening.

Yes, sure. I hadn't considered that point about carers themselves opting for private treatment. Helen.

We're hearing of people that have already been waiting for three years for hip replacements and the like that have been told that they're going to have another wait of another six years before they can have treatment on the NHS. We've been supporting people that have gone abroad for treatment, that have gone privately for treatment, that are obviously using their life savings for that, and our concern around that is that we're creating a two-tier system where those that can afford to pay become free of pain, which is wonderful for them, but there are so many more that are languishing on waiting lists. The pain levels are intolerable, for themselves, for their carers, for their families—the loss of independence, the loss of mental good health as a result of the chronic pain. It's just intolerable and it feels quite inhumane to them that they're having to wait for so long when they've already waited long enough.

Yes, I'm sure. Thank you. Go on, Alyson.

In addition to that, we're also hearing people who are telling us that they're actually looking to borrow money and going into debt because they don't actually hold the life savings themselves so they might be borrowing money from family or others, which is a significant concern. And then, for others, particularly in relation to, for example, children whose parents are worried about things like dental care, they're also feeling guilty if they can't afford to get their child dental care, but they are being told by a dentist that they cannot be seen on the NHS. So, we are hearing more and more about those aspects and the development of that two-tier service.

Sure. Thank you, Alyson. Gareth Davies. Sorry—. Yes, it is Gareth Davies.

Thank you, Chair, and good afternoon, everyone. My first question would be to Alyson from the board of CHCs. In your report, 'Feeling forgotten?', you say that most people told you they were in pain and the effects that that's had on them. What's the accessibility for those people to get pain support services as a result of that?

So, since we produced our report, we have heard from various health boards about the work that they are doing to support people whilst they are waiting on waiting lists, but those actions and those developments are not yet making a difference for people. So, we are still fairly consistently hearing about people who are waiting in pain, and some people to the extent—particularly in orthopaedics I referred to earlier, where some people are still telling us that they're not sure their lives are worth living because of the extent of the pain that they are living with.

Different health boards are developing different approaches, so they are using some of the funding from the Welsh Government to develop well-being services and rehabilitation services. And that, though it's a really positive development, it's really important that they do so with people and learn from what people say they need the most, and that they are able to provide those services in a way that meets people's individual needs, which are different.

I appreciate that answer, Alyson, thanks. We've heard concerns especially from the Royal College of GPs about people being on medication, on painkillers for too long, essentially. This can't be good in the long run, can it, really, especially if people are waiting for a long time for treatment. It's an awfully long time to be on medication that they might not necessarily require if the treatment was there and available. I'm just wondering if you share that view and if you have any sympathy with those cases, and the observations that you've seen in your role from people in that situation.

Yes. It's heartbreaking to hear from people who—. For those who are able to get the pain management, as you say, they are often concerned and worried about the length of time that they may need to keep taking that pain medication and then what wider effects that might have on their physical health, as well as sometimes being concerned about becoming addicted to pain medication. So, that's something that we hear fairly often, which is why, when health boards are developing these wider rehabilitation services, they look at the various different interventions that can help the person deal whilst waiting on the waiting list, as best as they possibly can. Also, obviously, not assuming that that waiting list is going to be for a long period; they have to do everything that they can to reduce these waiting lists and reduce the backlogs as soon as they possibly can. And that does require health boards and the NHS to work together collectively to deal with some of these challenges, because we do know that different parts of the NHS in Wales are affecting the length of the waiting lists and different times. So, we do have a little bit of a postcode lottery in Wales at the moment, with some people waiting much longer, for example, for eye care services, in one part of Wales than another, or for orthopaedic services in one part of Wales than another. So, it's really important that the NHS as a whole and health boards work together to understand where those differences are and to address those differences on a collective basis.

Kate, did you want to come in at all on an earlier point?

Yes, sorry. It was just to add to the issue around pain and pain management, and absolutely to highlight the fact that people are, long term, in pain and on long-term pain medication. From the carers' perspective as well, though, it's important to remember that what that means is actually a lot of unpaid family members have been tasked with—particularly more so in the last 18 months—being experts in administrating pain medication and medication generally, because a lot of the community services haven't been as readily available to support those individuals. And that includes quite a lot of young carers. So, there are quite a lot of young carers who are watching family members who are in chronic pain, managing painkillers and pain medication every day and having to help those people to balance that, to get that to the person they're caring for and the implications of seeing someone you care about and love being in chronic pain and discomfort. So, there's a sort of mental health element to that, but there's also, actually, a pressure, if you like, of an unpaid workforce being almost professionalised in its requirement to actually have to help and support people to manage pain and all the things that come with that. That's been exacerbated, obviously, by people having to wait longer periods of time before they can be treated for the cause of their pain.

I appreciate that. Just as a follow-up to those comments, a question about the accessibility of physiotherapy and hydrotherapy, and access to allied health professions whilst waiting for that care; does that tend to come as a result of the treatment that they're waiting for or do they have access to those services whilst waiting for pain management? I know there's a lot of information out there in terms of proactive steps people can take themselves, but is there anything being offered to them whilst in that middle zone, if you like?

Kate.

Again, for some people, obviously, the therapies are part of their treatment process and we've seen a lot of the therapy processes being paused. There was an issue in terms of capacity for specialist community therapies anyway, and that was a struggle and a strain for health boards and primary care regardless; the last 18 months have exacerbated that. So, for some individuals and families, therapies were part and parcel of the rehabilitation and treatment processing; for others, they are being used, with some individuals seeking them out privately to help manage their pain in the meantime while they're waiting for treatment or for waiting lists to be addressed.

But, a critical element of this whole conversation, particularly from a carer's perspective, is that, often, these things are not in isolation. So, a lot of those community therapies are delivered in community settings and in partnership with other colleagues and other agencies, like social services and third sector organisations. When those community buildings and those community facilities where those therapies may be being provided have been closed as well over the last 18 months for varying reasons connected to the pandemic and other pressures, what you've seen is, actually, an already stressed therapies regime being reduced even further and, therefore, some of the support that some of those individuals were able to access before, they haven't been able to access anyway.

So, it's a mixed bag, I suppose is what I'm saying. Some people have chosen to use it in the absence of anything else; other people were in receipt of it anyway but haven't been able to access it in the way they should. We had capacity issues before other things exacerbated the situation.

Thanks for that. My last question follows a similar theme, really. We mentioned earlier in the session that everything has mental health repercussions, especially around pain. So, do people feel like they have enough access to mental health support services? I can see you shaking your head there, so I can imagine what your answer is going to be, but it's really important, isn't it, that people do feel supported in their time of need, not just for the issue itself but the repercussions that come as a result of that, so what's the feeling around the mental health aspect then?

I think we've got some real concerns here. We have lots of people who share with us the impact of waiting in terms of their anxiety. We do know, again, that there's an awful lot of support out there if people know where to look and how to access it. So, those who may be in the most vulnerable situations might be the least able to self-advocate and to explain how they are feeling and describe what they need. So, that ability for somebody, through carers and care co-ordination, to be signposted is essential, so that people know what is available out there.

We speak to third sector organisations, for example, who explain that when people find them, they find them extraordinarily helpful, but their ability to find them is not necessarily through the NHS itself, because it does depend on individuals within the NHS to know what's out there locally. We know that things like 111—it's developing its signposting ability in these areas, and that will be really helpful in the longer term, but it's certainly not there yet.

Thank you.

Thank you, Alyson. Joyce Watson.

Right, I am unmuted.

You are.

My questions are around the support for families and carers, but my first one is about the ability, for families and carers, to support those people who are waiting long term, and not really knowing how long that wait might be, and whether you think that those families are being supported and equipped to deal with that.

The short answer is that's very patchy. I would say the answer really is no, we're not properly supporting unpaid carers and families to manage long-term care in the way they should be supported. There are issues, as I've said, around people finding themselves having to become experts in their relative's care, and not just looking after them, but actually having to become experts in how they administer medication and various other processes.

One of the other issues for the waiting list is when a family member does get a booking popped in for treatment, it takes an awful lot for family carers to actually organise how that will happen, how they will get someone into hospital. Sometimes, if you're talking about people who are sandwich caring, so you'll have people who might have an elderly relative that requires their support, but also, children, they will reorganise their lives and childcare, and then, if actually that waiting list appointment is cancelled at the last minute, the implications for that, in terms of putting all of that process to one side, is hugely significant. A lot of carers in Carers Wales' recent 'State of Caring in Wales' survey have highlighted the fact that, particularly in the last 18 months, they've been particularly exhausted, fairly isolated.

As Alyson said in the answer to previous questions, third sector organisations, and some community organisations have been doing some wonderful things, and if carers are connected to them, then they at least don't feel as isolated, but demand is far outstripping capacity, and one of the issues around being able to know that that support is there is feeling confident that it's there for the long term as well. So, when carers have found support, a lot of those caring projects and community initiatives are funded on an annual rolling programme, and so, you find yourself providing a service and then, coming towards the end of the financial year, organisations will find themselves wondering whether they'll still be able to provide that essential service for the next financial year going. So, in a weird way, we can create waiting lists within services while they wait to see whether they're still going to exist for the future, if you like.

So, it's quite a complex picture, and there's some positives, but I would say the vast majority of long-term caring situations they would feel that the support isn't really there for them, no.

I think my next question, you've sort of answered it from the carers side, if the carer becomes ill waiting for diagnostics and treatment, but if it's the other way around, the implications on the carer's ability to go about their daily life, because a lot of carers aren't full-time carers, and you've alluded to that, the care either side; I think you called it 'sandwich caring'. But some of them are actually trying to work as well. So, the implications on the different types of carers when they're faced with looking after somebody who is in the system waiting, and anything that you could say about that to us would be helpful.

Yes, absolutely. To reinforce that point, we have seen, particularly over the last 18 months, more people who were perhaps in work beforehand, and being able to part-time care, actually having to give up work and turn into full-time carers because some of the community services and the ability to be able to get treatment and access to essential things hasn't been there. So, the person they are caring for, their situation has exacerbated, become worse, and therefore, they require 24/7 caring from an unpaid family carer or friend. So, we have absolutely seen that happen across Wales.

We've seen greater pressure on young carers as well. There's been many young carers who, again, are trying to manage school, then trying to manage what's going on at home, but if a mother or father, or brother or sister is in requirement of treatment, and they've not been able to access, whether it's specialist therapies or a medical procedure, then we've seen young carers actually contact organisations like my own, Carers Trust, Carers Wales, and say, 'I'm really struggling in trying to manage my day-to-day life and my caring responsibilities.' So, this prolonged situation of not being able to access the support that's required is having a knock-on impact on unpaid carers being able to live their lives more equitably, get respite, being able to stay in work, able to stay in education, able to stay in school. We've also seen some young people who were at student age, who came home at the beginning of the pandemic, who may have been young carers but were initially able to go to college now questioning whether they can go back to college because the situation at home requires them to be there more often because of the situation that their family members are in.

Of course the pandemic has created a reprioritisation of health services and that in itself has probably had an impact, with people living with long-term health conditions like diabetes, which has been briefly mentioned. But what is the impact really of that reprioritisation on those people, and on the availability of those clinical appointments that they would normally have, whether they were annually, monthly or biannual?

Well, the biggest impact is that an awful lot of families and carers were living in a pretty precarious situation before the waiting lists were particularly exacerbated. But now what we have is a real position where things are in a very delicate balance, where, if you don't reinstate some of the regular reviews and medical procedures and appointments, then what we see is families and carers supporting someone who gets to a critical and crisis point, then actually the pressure on the NHS and the medical services moves from being routine to being acutely clinical, and often involves other partners, including social services and other agencies.

So, the biggest impact is that we are seeing families reach a more critical and acute element of intervention requirement rather than managing along the preventative agenda, and that's been the real imbalance situation, I suppose, that we've seen the most for unpaid carers, where we've moved away from people managing as best they can in a day-to-day situation, recognising that they have access to those clinical experts and appointments and processes that they require—not always perfectly, but it was there—to not being able to, having to become more expert in care in their own right and seeing the situation degenerate to more critical elements. And when that critical element happens, then, as I said, it's a much more acute pressure on NHS and other agencies.

And that—. Sorry, yes, Helen, you did want to come in.

Just to point out as well, with older carers, they're often cared for themselves as well. So, there can be co-dependent relationships where a partner with a bad hip is looking after a partner with dementia, but have various conditions themselves and so, negotiating how to get their own treatments and looking after themselves, as well as looking after somebody else who they're caring for—it puts even more pressure on. We've heard from older people who have had to put family in residential care because they couldn't cope anymore; of people who, because they couldn't get the support they needed from domiciliary care when people have come out of hospital, and they've been providing care, they've done themselves serious injury and not been able to provide that care anymore. It's absolutely devastating on families in terms of the effect that it can have just from the delays alone before, never mind everything that's happened through the pandemic.

The 'For the Moment' survey that we did with older carers earlier this year—half of them said that they needed support and most of them didn't know where to get it. Most of them said that they hadn't been offered a carers assessment from social services, even though that's a legal entitlement. And in terms of being able to cope, just knowing that there's somebody out there who will listen to you and help can make a huge, huge difference. But the services aren't there for carers. There's a lot of support that they need and there's an awful lot more that can be done, just in terms of extra information on how to provide the right support for the person who they're caring for—advice around medication, advice around exercise, which will help that person stay well rather than deteriorate while still waiting for treatment. So, there's an awful lot more that could be done.

Yes.

Is there a risk that people are starting to feel abandoned by the NHS, by their local health board, by the Welsh Government?

Yes, definitely.

Yes.

Go on, Kate. Then I'll go.

Just 'yes' to that. I think, obviously, there’s an understanding. It’s a funny relationship for a lot of unpaid carers because they recognise, having worked quite closely with a lot of agencies, that there’s an awful lot of pressure and there are capacity issues, and they do not like to place extra burdens on systems. What they really want is to be able to be given the support to be able to do what they need to do properly and safely at home. But, when they need that support, it is critical that they have access to it, and they feel valued as partners in that care pathway, and in the last 18 months, there has absolutely been a growing sense of feeling of abandonment and fear, actually—fear about whether things will return, when they will return, if they’ll return in time for me and my family’s situation, before it becomes critical. The four examples Helen’s just cited about people being put into residential care because they weren’t able to get the right assessment; people feeling that they have to adapt their homes in a way that they didn’t want to because they’re just waiting on an operation to become more physically able. All of those questions have been in people’s minds, and there is a definite growing sense of fear and anxiety. Perhaps not so much abandonment, because I think people understand the pressure, but there’s definitely a sense of fear and anxiety about whether normality will return in time for a lot of people.

Yes, and that's come through from what we’re hearing as well. People don’t think that normality is going to return. They’re so concerned about the growing waiting lists. They don’t have that much confidence that everything is going to open up again and they’ll be able to get the support that they had before. Domiciliary care’s been reduced. But we know about the crisis about that across Wales, and that’s going to take a long time to resolve.

In our survey of the latest experience of lockdown, we had over 1,200 responses, and reading what people said was heartbreaking, in terms of their worries and their fears. They didn’t know if they were going to be able to go back to work themselves, because they were needing to care so much more for their loved ones at home. They didn’t know if they were financially secure, some because they’d lost jobs because of the pandemic and because of their increased caring roles. They didn’t have confidence that things would happen soon enough to allow their loved ones to have any quality of life left, and the feeling of abandonment came through loud and clear. There’s so much more: that they felt more lonely, completely isolated because there was nobody else that they could turn to, whereas before, all these things would be there naturally in society, and they’re just not anymore.

And whilst we’re sort of coming out of the pandemic phase—obviously, not discounting anything with new variants and everything else—people are very frustrated that things can’t open up faster when there is so much more pressure on them and services. They want things to move at a much faster pace, because the situation’s intolerable for some, and they don’t know how much longer they’re going to be able to cope.

Thank you, Helen.

If I can, one other question to all of you is the financial burden that people are facing on their day-to-day management of the budgets that they have, especially people who’ve suddenly had to give up work, perhaps, to care for somebody. They’re not all in a position where they can afford that. Very often they’re not in a position where they can afford it. So, in terms of their financial strains that you’re hearing about, what are the messages that are coming through?

Thanks, Joyce, and just a brief answer if you can, just so that we can get through all the questions today. Kate.

It can be very brief. People are finding themselves being pushed closer to the poverty line. Welsh Government, actually, has a grant that it administers through Carers Trust Wales, which is the carer support grant, and an overwhelming amount of the applications to that support grant were not even for things that we would regard as a right, like a respite break; they were actually for practical tools—things like washing machines, things that enable you to actually maintain your caring role in the house, just day-to-day appliances. So, yes, we are seeing the impact of people not being able to work, and long-term caring is knocking on the doors of the finances. And, obviously, as I said earlier, there are young carers in those households as well, so there are issues with children in those situations too.

Thank you, Kate. Rhun ap Iorwerth.

Thank you very much, and thank you for your evidence this afternoon. We've heard reference already to the report by the Board of Community Health Councils in Wales, entitled 'Feeling forgotten?' I was looking at this earlier, and it referred to a report from 2018, entitled 'Our lives on hold'. Little did we know what 'lives on hold' truly meant in 2018, but the message is clear now that we need better communication with people when they are on waiting lists. What steps—Alyson first of all, please—what specific steps need to be taken to improve communication more generally with people while they are waiting, so that they know what's going on?

So, first of all, some people aren't even getting information as to where they are on the waiting list. So, some health boards have got much better at keeping in touch with people on the waiting list, explaining where they are on the waiting list and how long they can expect to wait, and then keeping that up; others less so. We know that the NHS in Wales is looking to develop an NHS app for people so that they can, in the longer term, find out about where they are on the waiting list and find out further information, but that's some way away, but nevertheless, a good development. Obviously, that's useful for people who are digitally enabled; not so helpful for those who might not be. But the key thing for us, as well as reducing that anxiety by letting people know where they are and how long they might expect to wait on the waiting list, is the proactive signposting to the assistance, advice and support that they can get in other ways—whether that be through the third sector, whether that be through online resources, which we're seeing an awful lot of, and whether that be through a care co-ordinator who can help them through that journey, who regularly and proactively keeps in touch with them whilst they are waiting, but also is aware of their whole pathway of care and is able to talk them through that. And that is happening sometimes in some places, but overall it's patchy.

Helen and Kate, both of you were nodding in agreement. Would you like to comment? Who wants to go first? Yes, Helen.

We've heard examples of people who don't even know whether they're on a waiting list and other ones who have been written to to ask if they still want to be on a waiting list, when it's very unlikely that someone doesn't need a hip operation any more, doesn't need a cataract removal, doesn't need all these other things. So, the way communications come from health actually have a little bit of a pushback to people. It's like, 'Oh, do you still want treatment?' 'Of course I still want treatment. My hip's got worse in all this time. Why would you think I wouldn't? Do you think I've got a magic wand?' And there is a distinct lack of communication going along.

The effects of not knowing what's going to happen or not knowing how long you're going to be on the waiting list—of course it's horrible to hear that you're going to be waiting for years, but if you know how long it's likely to be, you can deal with that to a degree. But, if you have no communication at all, you don't know, and there are so many people who won't come forward, who are still not coming forward for treatment that actually need it. So, there's not only the communication around those on waiting lists and those waiting for treatment, and those in receipt of treatment and other things happen along the way, there's also something about communicating to let people know that services are open, because we have real concerns about the numbers that we've seen through our surveys and seen through our services that are still saying that they didn't really want to bother the NHS because they're too burdened and it'll wait. There are so many conditions where some advice and information early on can assist a person to maintain their health and not get much, much worse, which, again, later on, puts additional strain on the NHS.

I was going to come on to that. Maybe Alyson can comment on that as well, on not just communicating where you're at on the waiting list, but what you can do in the meantime, as we hear there, to maybe ease the pain or keep yourself as healthy as possible while you're on the waiting list.

And that signposting is really mixed. As I said earlier, there's an awful lot of resources and information available out there to people if they know how to find it. So, there's a lot of support and resources online, and increasingly so, particularly on things like well-being and mental health. But if you take a look at, for example, a health board website and a local authority website, they don't signpost to each other and they don't signpost really well to the third sector in those areas. So, that makes it harder for people to navigate their way through. And for those who feel that they don't want to be a burden, they are the ones that will not ask for that kind of help.

So, yet again, as I said, we are seeing some really good examples in certain parts of Wales, with the introduction and the extension of things like community connectors, who can help people to navigate their way through the advice, help and support that could be made available. That is not available everywhere, but those kinds of things that do work well for people need to be identified, scaled up and extended across Wales as early as possible. Too often, we see some really good pilots, then sometimes they end when the funding ends for the pilot, and sometimes they stay within parts of health boards, not even extended out across a whole health board, and certainly not extended out enough to the wider NHS. Again, we are seeing, during the pandemic, much more discussions between health boards, and some shared learning between health boards, but more is needed to build that in to the psyche, I think, of the NHS in Wales, that they can learn from each other and not be constricted by their own boundaries.

Helen, sorry to interrupt you earlier. I wonder if there's another element of proactivity, Helen, that people might appreciate, which would be very, very transparent publication of waiting times for a local population, so that people can know exactly what's going on, very easily accessible. Would that be, again, a part of just trying to paint as honest a picture to people so that they understand a bit better what the landscape is?

Knowing more details would be helpful; I think, sometimes, the difficulty is how to get that message out and not make it sound too panicky, if you know what I mean. There's also, in terms of that, something to be said about how often people are contacted and how much else comes out there.

In terms of data and information on waiting lists and the rest, currently, the data collected for trauma and orthopaedic surgeries is lumped together, which doesn't give you a clear picture of how much is elective surgery and how much is emergency surgery that's going on. And so, we've seen huge differences across health boards across Wales recently in terms of the pandemic recovery and how much surgery is happening, but we've got no clear picture of how much planned care is actually going ahead. From the bits that I've picked up, there are huge disparities across Wales, and I think, like Alyson was saying, the health boards are learning together, there are some great examples of how they have upscaled and they are getting through stuff, but that's not happening in other areas. No-one's up to pre-pandemic levels because of social distancing and all the rest, and we understand that, and there's a lot to do in terms of the additional workforce, but there are huge differences across Wales. And so, the postcode lottery is really problematic. So, if you live in one part—. I don't need to explain the postcode lottery to anyone here, but there are huge differences. So, having more information out there generally would be useful, but if you're going to publish information on how long waiting list times are, it would also be useful to say what we're doing to try and reduce those over time as well, I think.

Kate, I'd like to bring you in on the whole communication issue, as well. What are your thoughts on that leaving of people in limbo, not really knowing what's going on and the need to strengthen that?

I would absolutely say communication is essential in this situation, to be honest. I was reflecting on everyone's comments, and one of the other things I was thinking about is the accessibility of that communication. We've talked about how there's a lot of stuff online. There's still some digital poverty in Wales and the assumption that people can access everything online. Then we have different groups—I mentioned them earlier—people with a learning disability and families who are supporting individuals with a learning disability, where things like accessible information are critical. We've got examples where individuals with a learning disability will be sent a very complicated and complex letter. I have a sibling myself, so I'm looking at some of these letters sometimes and thinking to myself, 'Right, I've got to navigate this and somehow I've got to make sense of that to my brother who lives with Down's syndrome.' A lot of the information being sent out isn't actually in formats that are accessible for people, too. So, there's an issue with the waiting lists, but there's also an issue with people occasionally missing appointments, which is equally frustrating for the NHS, because information isn't always accessible. So, I think that's all critical as well.

In terms of the unpaid carer population generally, knowledge is power, so if you know your situation and then you know you can plan for a certain amount, that obviously takes some of the anxiety away. But it doesn't take all of it away, and it's absolutely critical that the points that Alyson made earlier about knowing where that community support is and how you can access it mixed with the point that I've just made about making sure that those messages are as accessible and in as many different ways as possible are critical here.

And it isn't always at a hospital front door, as we know. There are some really interesting conversations going on around primary care clusters and how those are managed, and, as Alyson pointed out, the community connectors, having community nurses, that sense of a central community hub is a really interesting idea and a lot of unpaid carers are quite interested in that, to be able to access things that are much closer to them, rather than to have to travel a long way.

Of course, this is a wonderful country we live in. We have incredible diversity, don't we—rural communities and urban communities, and there are those issues, as well, where we have seen unpaid carers being told, 'Well, here is—'. When you do get an appointment, as I said, having good notice for that appointment is critical, because if you have to get on several buses to get across some of our more rural counties to get to a hospital or a clinical setting, it's absolutely critical you have the time to be able to plan that. But then, it's equally critical that we recognise that we can't just suddenly cancel on those people, because of the requirements and pressures it's put on people to get there in the first place.

Thanks for all your really thoughtful answers. One last question, and maybe pointing a finger at ourselves as politicians here, as well, and at community leaders and Government and all the rest of it, how important is it now—I guess I include the work that we're doing as a committee here in this particular inquiry—that we have a really open conversation as a nation about the challenges in front of us, the need, perhaps, to prioritise people in a way that hasn't been done before, or hasn't needed to have been done before, and how the whole backlog issue is going to be dealt with? Who fancies sharing thoughts on that? Yes, Kate.

I believe it's really important. I think it's really, really pivotal. We've had conversations and words get thrown around about recovery, recovery from the pandemic, and we had issues with waiting lists before COVID came along and exacerbated things. But I think it's really critical to have an open and transparent conversation with the nation, to have a clear plan and to be upfront—to be upfront about the things that we have as a challenge as a nation. We recognise we have recruitment capacity issues in the health workforce and in the social care workforce. I've already touched on some of the issues that we have as third sector organisations in terms of the way funding is done on annual rolling programmes and the ability for people to have confidence in continuity of some of that support.

Too often, when we have conversations about big plans behind closed doors and we tell people, 'This is what's happening,' a lot of people can still feel that it's being done to them, not done with them and in recognition of the situation they're living in. So, I would advocate strongly for a transparent plan, an open conversation and reasons why, so that everybody can invest in it together in Wales in terms of the population's health.

Yes. Don't feel you have to, but, Alyson—.

Yes, but that conversation needs to be a well co-ordinated one. We need to avoid mixed messages, for example. So, some of the things that people struggle with are mixed messages about, for example, the scale of the pressures on the NHS in Wales and, 'Only use it when you need it' on the one hand, and people understand that as they can see the scale of the pressures themselves, and then, on the other hand, 'Seek help as quickly as possible when you identify that you have symptoms'. If those messages and those conversations aren't done in a holistic way, it just causes confusion and worry for people even more. So, yes, let's have that conversation, but let's have that rounded conversation about what it means for everyone. I think that's really important.

I can offer you the last word on that, Helen, if you like.

I pretty much agree with what's been said. Age Cymru and every other charity would happily join in any campaign to try to get clearer messages out, and we frequently do through communication. Yes, it's about letting people know what's being done to change things as well as being clear about where we are with the waits and stuff. We can't clear waiting lists overnight. That can't be done. The staff aren't there, and all the rest of it. But there is more that can be done at the lighter end to allow people to wait well, as well. And much clearer messaging on, 'Please do come forward because we can help you in the meantime whilst you're waiting for other things', would really, really help, because there are so many conditions that can be helped early, like rheumatoid arthritis, and all the rest of it, where just earlier diagnosis with people coming forward would help so much.

Yes, that note of waiting well ends things well there, I think. Thank you.

Yes, thanks, Rhun. Absolutely. Thank you to our witnesses today, our last panel of the day. Thank you ever so much for your time today and your written evidence over the summer period as well for our priorities consultation. We'll send you a copy of the transcript. Please let us know if you want to add anything to what you've said today that you think will help our inquiry.

I realise this is the last session before we break up for the Christmas period, so I think it's 'Nadolig llawen' to Members and to the committee team. I thank the committee team, the clerking team, the researchers and the wider integrated team for what they do for us, and wish our stakeholders and those who follow the committee Nadolig llawen as well. We also appreciate, of course, that many of those who work in health and social care won't have a break over Christmas, so, on behalf of the committee, we recognise all the work they do as well and wish them well, and their families, over the Christmas period. So, Nadolig llawen. That brings our public session to an end today.