Y Pwyllgor Iechyd a Gofal Cymdeithasol

Health and Social Care Committee


Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Gareth Davies MS
Joyce Watson MS
Mike Hedges MS
Rhun ap Iorwerth MS
Russell George MS Cadeirydd y Pwyllgor
Committee Chair

Y rhai eraill a oedd yn bresennol

Others in Attendance

Alyson Thomas Bwrdd Cynghorau Iechyd Cymuned yng Nghymru
Board of Community Health Councils in Wales
Andy Glyde Cynghrair Canser Cymru
Wales Cancer Alliance
Calum Higgins Cymdeithas Siartredig Ffisiotherapi
Chartered Society of Physiotherapy
Dai Davies Coleg Brenhinol y Therapyddion Galwedigaethol
Royal College of Occupational Therapists
Dr Christian Egeler Cyfadran Meddygaeth Poen
Faculty of Pain Medicine
Elin Edwards Sefydliad Cenedlaethol Brenhinol Pobl Ddall Cymru
Royal National Institute of Blind People Cymru
Gemma Roberts Sefydliad Prydeinig y Galon
British Heart Foundation
Helen Twidle Age Cymru
Age Cymru
Joseph Carter British Lung Foundation & Asthma UK
British Lung Foundation & Asthma UK
Kate Young Cynghrair Cynhalwyr Cymru
Wales Carers Alliance
Mary Cowern Cymru yn Erbyn Arthritis
Cymru Versus Arthritis
Richard Pugh Cynghrair Canser Cymru
Wales Cancer Alliance

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Aled Evans Cynghorydd Cyfreithiol
Legal Adviser
Claire Morris Clerc
Helen Finlayson Clerc
Lowri Jones Dirprwy Glerc
Deputy Clerk
Philippa Watkins Ymchwilydd
Sarah Hatherley Ymchwilydd



1. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau 1. Introductions, apologies, substitutions and declarations of interest
2. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda gweithwyr proffesiynol perthynol i iechyd 2. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with allied health professionals
3. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda Chynghrair Canser Cymru 3. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with Wales Cancer Alliance
4. Papurau i’w nodi 4. Paper(s) to note
5. Cynnig o dan Reol Sefydlog 17.42(ix) i benderfynu gwahardd y cyhoedd o'r cyfarfod ar gyfer eitemau 6, 7, 8 ac 11 5. Motion under Standing Order 17.42(ix) to resolve to exclude the public from items 6, 7, 8 and 11 of today's meeting
9. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda sefydliadau sy’n cynrychioli pobl â gwahanol gyflyrau iechyd 9. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with organisations representing people with different health conditions
10. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda sefydliadau sy’n cynrychioli llais y cleifion 10. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with organisations representing the patient's voice

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

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

Cyfarfu’r pwyllgor yn y Senedd a thrwy gynhadledd fideo.

Dechreuodd y cyfarfod am 09:30.

The committee met in the Senedd and by video-conference.

The meeting began at 09:30.

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

Croeso, pawb. Welcome to the Health and Social Care Committee this morning. This is a hybrid session, so some Members are here in the Senedd estate and other Members are joining virtually this morning. All our witnesses today are joining us virtually also. The session is bilingual, as always, so Members and witnesses can speak in Welsh or English. And, with that, we'll move to item 1. We have apologies this morning from Jack Sargeant, who's unable to be with us, and I know that Mike Hedges has given his apologies for the very last session later on this afternoon. If there are any declarations of interest, please say now. No.

2. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda gweithwyr proffesiynol perthynol i iechyd
2. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with allied health professionals

In that case, I move to item 2, and item 2 is in regards to our piece of work on the impact of the waiting times backlog on people who are waiting for diagnosis or treatment. We have an evidence session this morning with various health professionals; we've got four panels at committee today. The first panel is in regards to health professionals, and we've got three witnesses before us, and I'd be very grateful if the witnesses could just introduce themselves, please, for the public record.

Good morning. I'm Dai Davies. I'm the professional practice lead, Wales, for the Royal College of Occupational Therapists.

Bore da. I'm Calum Higgins. I'm the public affairs and policy manager at the Chartered Society of Physiotherapy in Wales.

Good morning. I'm Christian Egeler. I'm a consultant anaesthetist and clinical lead for persistent pain in Swansea and work closely with the Welsh Pain Society.

Lovely. Thanks, all, for being with us and for your papers that you submitted over the summer in terms of the wider consultation, which we've used to support this session as well today. Can I ask first of all where are the bottlenecks and pinch points in terms of orthopaedic services? Would anyone like to take that first?

I can go first, Chair.

So, the physiotherapy waiting times were quite low during the middle of the pandemic, mainly because we weren't seeing that throughput of patients from orthopaedics, and so, we've seen that big rise in waiting times to above the pre-pandemic levels now into physiotherapy, which is from the partial restart of the orthopaedic elective surgery. It is that elective element, I think, of the waiting lists that is now starting to come through that's causing a huge bottleneck in the system. There are a lot of people waiting, including people waiting longer now, getting more pain problems, more mental health issues and deteriorating far quicker and into a worse condition by the time they arrive into the healthcare system. So, that's obviously causing increased stress for our waiting times, and I think for the other professions as well, as patients are now probably more complex than they were previously, both clinically and socially. It's far more difficult to deal with their issues, and there are several things that they need dealing with rather than just maybe one issue, which may have been prevented and dealt with earlier on, if they hadn't waited so long. So, that's really, I think, the main issue in the bottleneck from our perspective.

Thank you, Calum. Does Dai or Dr Egeler want to come in at all?

Yes. I'll come in. It's the same issues as the physios, but I'd like to draw attention to the other waiting lists, the social care waiting lists for OTs there. That's increased substantially and that has an effect on the orthopaedic waiting lists, because, obviously, we're struggling to get people out of hospital, and the amount of people who are not seen that end up in A&Es because of falls and suchlike. So, obviously, it's really important that you focus on that single waiting list but understand that the other waiting lists have a major impact on that .I should imagine quite a lot of the people coming in and falling—coming in to A&E—are actually on social care waiting lists waiting for stuff like equipment and stuff to help them in their homes. I really want to point that out to make sure that's evident as well.


If I ask Dr Egeler to come in in terms of what are the consequences, I suppose, of what Calum and Dai Davies have outlined from your perspective. The mike should go off by itself, but I notice it's not at the moment. Sorry, I may not have heard. Christian Egeler, do you want to come in at all? There we are.

Yes, thank you. I think most pain services across Wales have struggled before the pandemic with the usual sort of pressure on patients being referred into their services. The pressure at the moment now is vastly increasing, even though a lot of the referral numbers did drop off during the initial lockdown. But because most of the members in each service had to be redeployed, that meant that hardly anything has been happening for pain services. For about 90 per cent of pain services, everybody is back where they should be, and the biggest problem that is causing the bottleneck in moving forward is that we have lost most of the locations we are working from, and that is particularly true to our pain management programmes, but also clinic spaces and intervention spaces. We seem to have lost a lot of those, and this is creating a huge bottleneck because we simply don't have the spaces to treat patients.

There is a wide variety and variation of waiting times for patients, and it all relates to how much services have been able to actually look after patients during the past 18 months. Some have been able to start a lot earlier than others, and there are services out there that are still seeing members being pulled in different directions. 

And is there a solution in terms of what you've outlined? You've outlined the situation there, Dr Egeler, but is there—? What's the solution, in your view?

The solution has to come from support from our management to actually make available facilities and rooms, and make available the money as well, because most rooms that we have, we're trying to have out in the community. All of that costs money, and most of the budgets in services have been cut so much that we had to save money in that respect. 

Okay. So, it's a space issue and a money issue, from your perspective. Calum Higgins, you wanted to come in.

I just wanted to back up what Dr Christian said there in terms of space and facilities. We've had the same issue reported to us from members. It's pretty much across Wales that things like the gyms we'd use for rehab in hospitals have been procured for PPE storage and non-clinical use in a lot of cases, which is quite disappointing. Locally, we've tried to have those conversations to bring these spaces back into physiotherapy and rehab use. Hydrotherapy pools have been closed and staff well-being areas as well—areas for staff to take their breaks have been taken away for other use.

Clinically, I think the most important point to raise is these spaces are used for rehab in hospitals.

Can I just check on that? Because, presumably, those spaces are allocated for the right reasons, and there aren't any other spaces available. So, how do you square that, from your perspective, in terms of a solution?

That's a good point, Chair. In some cases, they weren't acquired for clinical reasons. So, we'd say, 'If it's a clinical reason, that's fair enough, but the alternative, then, needs to be put in place.' So, as Dr Christian just said, the idea is you move to the community, which, in principle, we really agree with and support as a long-term move anyway, but those—. What we've found is it depends on the area. If you were to move a physio service maybe to the leisure centre to work with the local authority, in some cases, those leisure centres right now are vaccination centres, so there actually is nowhere to go. And so, if there's a clinical need for that service, it needs to go somewhere. We have lobbied, across Wales with different health boards, to try and get these spaces back, particularly if there's no clinical reason for them having been taken away.

Okay, thank you. And Dr Egeler talked about variations across—I think he was referring to across Wales, as well. So, are there variations across the health boards across Wales? Would any of the panel like to comment in that regard?


I can maybe refer the panel to a PowerPoint presentation that I've prepared that contains a lot of relatively detailed information, anonymised, but it gives you an idea of the range of waiting times, the number of patients waiting, as far as we know. As I said earlier, it all relates a little bit to what the situation was before the pandemic, this has all been exacerbated now, and we're talking ranges between four to five months for patients waiting for new appointments to something like two years, and this is a reflection, I think, historically, of how well individual services have been funded, but also reflects how well services have been able to actually be efficient enough and pull things together and smooth the edges to make systems and internal pathways run smoothly.

Thank you, Dr Egeler. I think, on some of what's been said, that Members will, I know, want to ask specific questions, so I won't pursue any more lines at the moment, because I'll be taking questions from other Members. Rhun ap Iorwerth.

Diolch yn fawr iawn, Cadeirydd, a diolch i'r tri ohonoch chi am ddod atom ni heddiw yma. Dwi am edrych os caf i ar faterion yn ymwneud â staffio yn benodol. Dr Egeler, rydych chi wedi dweud yn barod fod y rhan fwyaf o staff sy'n ymwneud â delio â phoen a gafodd eu symud i adrannau eraill wedi mynd yn ôl i'w hen swyddi nhw, os liciwch chi, rŵan. Allwch chi ddweud os oes yna unrhyw broblemau staffio yn parhau wrth inni edrych ymlaen at yr adferiad COVID?

Thank you very much, Chair, and I thank the three of you for coming to us this morning. If I could look at staffing specifically, Dr Egeler, you've said already that most of the staff working in pain management who were moved to other departments have now gone back to their old jobs, if you like. So, could you tell us if there are any staffing problems that are still ongoing as we look ahead to the recovery from COVID?

I do apologise, you're putting me on the spot, because I have not understood what you said. The translation doesn't seem to be working.

Oh, okay. I apologise. Can we just check on that then? If you go to the bottom of your screen, there's a globe at the bottom of your screen, and if you click on that globe and click on to English, then you should get the Welsh translation. If I could ask the translators to say something to make sure that they can—?

[TRANSLATION: 'Hello, this is translation, I'm just checking that it's working for you, Dr Egeler.']

Could you hear that, Dr Egeler? And Dai Davies couldn't either. No, okay. Can we just double-check that?

[TRANSLATION: 'Good morning. Can you hear me now? Yes, okay. Thank you very much.']

I could hear. Dr Egeler, could you hear? And, Dai Davies, could you hear that? You could hear that.

[TRANSLATION: 'Dr Egeler, could you hear me? Can everybody hear me?'] 

Yes, I can hear you.

So, do you want to say something else, translator, to make sure that we can hear?

[TRANSLATION: 'Okay, testing. One, two. Can you hear me? Yes, okay. Thank you.']

Yes, Dai Davies can, and, Dr Egeler, you could hear as well, yes? Yes, that's lovely. I don't know, Calum Higgins, did you—? You heard that question—do you want to address that?

No, Rhun's happy to ask the question again. Thank you.

Diolch yn fawr iawn. Ymddiheuriadau am hynny, Dr Egeler. Diolch ichi wnes i am gadarnhau bod y mwyafrif o staff delio efo poen a gafodd eu symud i rolau eraill yn ystod y pandemig bellach wedi symud yn ôl i'w hen swyddi nhw. Jest eisiau gwybod: oes yna broblemau staffio eraill yn benodol yn parhau o ran delio efo poen wrth inni edrych ymlaen at yr adferiad COVID?

Thank you very much, and apologies for that, Dr Egeler. I was thanking you for confirming that the majority of staff dealing with pain who were moved to other roles during the pandemic have now moved back to their old roles. But I just wanted to know, are there any other staffing problems specifically continuing in terms of dealing with pain as we look forward to the recovery, post COVID?

Thank you. Yes, there have been issues with a number of team members actually leaving. In our own health board, we have lost two of the four medical staff, due, essentially, to burn-out and some people getting to the age where they were thinking of retirement. There is a general feeling that people are pulling out of working for the NHS, and this, certainly in our services, has been the case in Hywel Dda as well. I've not been told of other health board pain services that have lost a lot of staff, but there is always the difficulty of filling posts, basically because, again, of budget constraints. And this is having an impact on, obviously, efficiency, on waiting times, and to some degree on the quality of the service that way, because the longer treatment waiting times take, I think the more we lose some of the quality of what we can achieve.


Diolch yn fawr iawn. Ac atoch chi’ch dau hefyd. Calum Higgins, sut mae hi o ran physiotherapists ar hyn o bryd, o ran pwysau staffio yn benodol?

Thank you very much. How about the other witnesses? Calum, how is it in terms of physiotherapists at present, in terms of staffing pressures specifically?

Diolch am y cwestiwn. Dwi'n cytuno gyda Dr Christian; yr un pwyntiau, rili. Mae’n bwysig dweud roedd gwasanaethau poen yn llawn i’r top anyway, i gapasiti, gyda’r cleifion oedd yn dod trwyddo cyn y pandemig. Does dim byd ecstra wedi dod i mewn o ran arian neu adnoddau nawr bod y pandemig wedi bod, a bod pobl yn aros ac mewn mwy o boen ac yn aros yn hirach. Felly, yr un problemau. Ac mae staff wedi bod ar redeployment mas i’r gymuned. Mae rhai wedi dod nôl, mae rhai dal ar redeployment. Felly, mae’n gymysg mas yna, beth sy’n digwydd o amgylch staffio a ble maen nhw. Felly, beth fuaswn i’n dweud yw bod angen mwy o adnoddau, rili, ar wasanaethau poen i gael y staff i mewn a gwneud yn siŵr bod llai o stress arnyn nhw fel unigolion.

Thank you for the question. I agree with Dr Christian on the same points. It’s important to say that pain services were full anyway, in terms of capacity, with patients coming through before the pandemic. There's nothing extra that's come in in terms of funding or resources now that the pandemic has happened. And people are waiting and they're in more pain and they're waiting for longer. So, it's the same problems. And the staff have been on redeployment out in the community. Some have come back and some are still on redeployment, so it's a mixed picture out there in terms of staffing and where they are now. So, what I would say is that we need more resources on pain services to get the staff in and ensure that they are less stressed as individuals.

Ac o ran OTs, Dai Davies.

And in terms of OTs, Dai Davies.

Yes, it’s the same as what Calum said. They're extremely exhausted at the moment. Our paediatric children's therapists were all redeployed, and that's had a major impact on paediatrics, on waiting times and children's waiting times. So, it's really hard for our therapists coming in and seeing the complexity of patients that they are seeing now. We’ve got long-term recruitment problems in most of our areas, including social care, and student streaming didn’t help the situation this year either, where our graduates were placed. So, that was a major, major issue. But, it’s the same issues as in what Calum said, they were underdeployed anyway before the pandemic, and it’s just really emphasised the lack of resources in these areas.

One thing that can’t be done to get us out of this current situation and deal with the backlog is to just pile the pressure on staff. You can’t just ask staff to work all hours. Are you seeing risks, Dai, that that is happening, that the workload actually of the workforce itself is unsustainable?

Yes. I've been speaking to our managers in previous weeks, and they were saying that some of the recovery money is great, and they’ve got money, but they’ve got no staff to give it to because there are no staff out there. You can give overtime as much as you want, but that takes its toll. A lot of our staff were affected by COVID, a lot of them are still suffering from COVID-19. So, there are issues. They are tired. And again, talking about variation, occupational health services in the NHS and social care in particular vary throughout Wales, and the level of support they get varies in relation to how they manage themselves. So, our managers do say our therapists are tired and they’re really concerned going into December and January because that’s always traditionally a busy period anyway. But, obviously, it’s much, much worse now.

Calum, ydych chi’n gweld unrhyw alarm bells bod, rhywsut, yna rhyw trend i jest gofyn i’r gweithlu gario’r pwysau a bod hynny’n anghynaliadwy?

Calum, do you see any alarm bells that there are any trends to just ask the workforce to carry that burden and that that’s unsustainable?

Ie, dwi wedi siarad â’r ffisios am hyn dros yr wythnos diwethaf, rili. Beth maen nhw’n dweud wrthyf fi yw nad ydyn nhw’n gweld diwedd i hyn. Dyna’r broblem. Does dim cynllun mewn lle yn eu meddyliau nhw bod diwedd yn dod i’r problemau reit nawr. Felly, problemau tymor hir ydyn nhw yn eu meddyliau nhw, ac mae hynny’n achosi iddyn nhw ofyn cwestiynau am eu gyrfaoedd nhw yn y tymor hir, os nad ydyn nhw’n gweld diwedd i’r problemau reit nawr. Yr unig ateb, rili, yw atebion tymor hir. Rŷn ni’n erfyn y bydd mwy o ffisios yn y dyfodol. Mae Llywodraeth Cymru yn mynd i hyfforddi mwy o ffisios, ond mae hwnna’n mynd i gymryd amser, ac mae’n mynd i gymryd amser i wneud yn siŵr bod y ffisios yna yn y lle iawn, gyda’r sgiliau iawn yn y tymor hir. Bydd rhai ohonyn nhw’n mynd mewn i advanced practice, ac mae’n cymryd blynyddoedd i fod yn y sefyllfa yna. Felly, reit nawr, yn y tymor byr, mae staff yn meddwl bod dim ateb yn dod, ac mae hynny’n achosi alarm bells, fel ti'n dweud, Rhun.

Yes, I’ve been considering this in recent weeks. What I’ve heard is that they don’t see an end to this, and there’s no plan in place in their minds that there is an end to these problems. So, they are long-term problems. And that’s causing them to ask questions about their long-term careers, if they don’t see an end to these problems now. The only answer now is to have some long-term solutions, and we do expect that there will be more physiotherapists in the future and the Welsh Government is going to train more physios, but that’s going to take some time, and it’s going to take time to ensure that those physios are in the right place, with the right skills. Some of them will go into advanced practice, and that takes years to be in that situation. So, in the short term, the staff think that there are no solutions that are coming down the line, and that is causing some alarm bells. 

And, Dr Egeler, perhaps I’ll ask the question in a slightly different way to you to close this little section. Are you confident that you can get back to the delivery of what we might call normal or normal-ish services and do so in a way that's sustainable in terms of pressure on the workforce? Dr Egeler.


From our service in Swansea, we actually spent the time during the lockdown that was available to actually redesign a lot of parts of our service, so I think moving forward in the next sort of six months, we are very hopeful that we are getting into a very good place, even better than before the pandemic. That isn't true for a lot of the other services across Wales, and again, it goes back to staff availability, location and facility availability, and like Calum was just saying now, there's a general sense of those people that have been putting in a huge amount of work over the past 18 months, who then face in the next year from April further budget cuts. We in Swansea have no idea where that money might be coming from.

Thank you very much, Chair, and good morning, everybody. I just want to focus on pain management support. Where in your view are the gaps in the provision of pain management support across Wales, including pain management support programmes and pain clinics?

There is the variation across Wales in terms of who is available to provide pain management programmes. We've come a very long way in the last 10 years in providing a degree of pain management programmes in literally every health board. The numbers are very high, but I think on the whole, they are sufficient for those patients that actually are in a position to agree and be ready to join into the self-management and pain management programme approach.

I think there has been a lot of emphasis on self-management in primary care, in the community, and then being provided in specialist services as well. What is often not quite so well understood is that in order for that to be successful, patients have to be in a position to actually go with it, and a lot of the patients that we see are not in that position, and many, many patients that we refer into our pain management programme are actually dropping off before they are being invited into such a programme. So, from about 25 per cent of patients coming to our clinic that we deem to be in a position to enter a programme, [Inaudible.] of those people will not actually ever get there, because they decide for themselves that this isn't for them.

So, in terms of capacity, I think moving forward, the capacity is pretty much there; what we are starting to see that is going to miss in the future is the biological, medical aspect of persistent pain, which is getting pushed a little bit more towards the side in favour of managing everything through self-management and activity, and whilst every single practitioner in a pain clinic will focus on aspects of self-management, I think we need to not forget that there are biological factors that can be specifically addressed, and there are medical factors that we mustn't forget in that respect.

Thank you for that and I'm particularly interested in the point you mentioned about regional variations, because I fully acknowledge that it would be a different case, say, in north Wales to what it might be in mid or south or west Wales.

So, I suppose it's a question for Calum and Dai. How do you think the pathways to physiotherapy and OT can be improved in dealing with pain management? I know people can self-refer into physiotherapy rather than taking the conventional GP route, but how do you think we can better improve those pathways into allied health professions for the patient?

I think that's probably one of the most important aspects of what's happening right now is rethinking some of those pathways. I think, as you said, there are several routes into physio. You can self-refer, the GP can refer you, you can be referred from hospital, having had an operation. The key aspect would be to be seen earlier by a physio or by an AHP in a multidisciplinary setting. We want to see teams of professionals together seeing patients at the earliest point, really, in the pathway, in their journey, and a definite move as well into primary care in communities. So, some of you will be aware of first-contact practitioners; there are physios who are advanced practitioners in the community and GP surgeries. They are trained to a level where they can be the first point of contact for a patient. Now, if you have more of those kinds of people, those people with that skill set, across Wales, they can pick up a patient when they walk into the GP surgery and help manage them much earlier in the process, and elongate the time it takes for them to be needing an operation, or not needing one at all if they've dealt with the issue early enough. So, it's having, I think, a different pathway that's far earlier in the process for patients, and in the community, in primary settings, that we really need to start looking at. There has been investment there across Wales previously, but they're more like pilot projects, and they're based on quite unsustainable funding. We want to see that firmed up, and for these posts to be permanent and to be expanded across Wales in a far more consistent way.


Can I jump in there? Exactly the same as Cal, just for example, there's a pilot up in north Wales in the GP surgeries called iCan, which is occupational therapists dealing with people with complex mental health and physical problems. So, you go into your GP, you get seen by an OT, they look at how your mental health and physical health are interacting, and that really stops referrals on, then, to more severe mental health interventions and such. So, there are already loads of good pilots out there, but they've all traditionally been funded by obviously the transformation fund and the integrated care fund, which I know is changing soon. But they're only short-term funding. They're doing these excellent results, and they're just waiting for it to be put in core funding. So, that's a big part of variation as well. So, like Christian was saying, their service in Swansea, they've developed stuff—now, how does that get shared throughout Wales and made into the main stream? That's how it should have gone. So, there are good pilots out there, in north Wales and in Pembrokeshire—it's just now how do we expand them to really solve problems, because that's the future: being able to see a podiatrist OT, a speech and language therapist at GP level, which can prevent lots of the heavy waiting lists later on.

I appreciate that, thank you very much. So, in terms of where we are today, in terms of waiting times from iCan through to GP referrals and self-referrals into the allied health professions, if I needed that service today, and I presented myself to a GP or self-referred, how long roughly would I wait for that, for that service to be delivered? And what are the effects of the long waiting times on out-patient physiotherapy for people with musculoskeletal problems? Do you think there's any link there between longer waiting times meaning more chronic cases and long-term disabilities?

I think that question was mainly directed at me. I think, to answer that last point first, definitely the longer waiting times—we've been talking about physios—are causing deterioration, more complex cases, and it's harder to deal with those patients once they've got into that condition. Also, I've heard of physios who've said that people are turning up in the emergency setting who are on waiting lists; people have fallen, and they're waiting for a hip operation, and that's caused them to fall, they end up in A&E. So, that again means they're in a worse condition when they actually go for their operation, and then come back, referred into physio. So, those are all issues intertwined, really, and it does worry the profession.

In terms of waiting lists, the way I think it's been dealt with, I'd say it's at least 50 per cent higher than it was pre pandemic across the board from the figures I've seen, from last September. The way it's been dealt with is that self-management that Dr Christian was saying—it's the only way the numbers are being dealt with, really, and kept as low as they are. It's that resource being given to the patient for them to manage their own conditions—online resources, dealing with patients virtually, rather than one to one. That's the only way that the waiting lists have been kept as they are, and they're still above the pre-pandemic levels. As I said, they saw a 50 per cent rise. So, it's not necessarily patient choice. That's what they've been given. I think that's the caveat. It's just how it's been dealt with at the minute, and change, in some aspects, has been good. Some patients really want that resource, and that's the best thing for them. For other patients, it's not the right approach, and, actually, we do need to evaluate the effectiveness of this approach and the delivery  method over time. It'll come to a point now where, soon, the data will be available and the evaluations will be available, because these programmes have run long enough. So, we need to have a look at that, I think, in the longer run.


Thanks for that, and I agree with that last point, and you touched on it there about a little bit of personal responsibility and it being a two-way street between physiotherapy and taking that initiative to engage in exercises and be active. But, I think in terms of having that two-way street, they need to know what the best exercises are because, obviously, they've got varying ranges of problems and disabilities. So, in terms of getting that information out to people in the public domain online or through leaflets, how can we tailor that a little bit better so people are aware of this on a broader scale? 

It's taking that patient-centred approach, I think, and the best practice I've seen generally focuses on that patient. Some of them prefer online. If that's the approach they want, we can tailor it to them. If somebody isn't very good at online, has digital issues, access issues, it's making sure that that person is still seen face to face and given the advice that way. It's got to be patient centred, it's got to be for that individual; whatever service you design, that's the best way of approaching the problem and getting the patient uptake. There are programmes out there that have been very well evidenced that work, and I just thought I'd give a mention to ESCAPE-pain. That's a great programme that involves many professions, mainly physio led, but basically, it helps people manage their pain as they're waiting, and that's across—. Most health boards have implemented that, and have introduced extra resources to that because it's quite cost effective, and it does work; it's well evidenced. So, that blanket approach works for a lot of people, but within that, you do need that clarity that the patient comes first, and that you adapt to that patient to make sure that the service meets their requirements.  

I appreciate that. Thank you. In terms of clinically validating waiting lists now in light of the pandemic, with long waiting lists, you can imagine that the initial problem that patients have presented with has changed over that time, and mutated, to coin a phrase. So, in terms of the quality and the fair reflection of where that patient's at, is there some sort of process of reassessment during that waiting time to accurately get a true picture of the exact treatment that patient needs? I suppose that's a question more to Dr Egeler at this stage to get a professional view on that. 

In our own service, we constantly re-evaluate and validate our waiting lists, and that has had a very big impact on directing people to the most appropriate part of the service. It has also been, like I said earlier, instrumental to actually keep our pain management programme waiting times down, because through the validation process, a lot of people may realise that this is not something they want to engage in. We are in a good position ourselves here, because we have very good admin support in order to do that and, again, a lot of other services across Wales do not have that admin support or managerial support to be doing all this work, which is fairly time intensive. And those are, then, not surprisingly, the same services that really struggle with high numbers of patients waiting, no way of actually finding out whether they still need the service, and limited facilities to actually deal with them.

I would also like to say that a lot of effort has gone in, over the past 18 months, to put a lot of resources online. So, quite a few services, when a patient gets referred, they will get a link to websites that contain a lot of information, and that will enable patients to already start with self-management aspects, to manage their pain situation. That has certainly been very helpful, along with the notion that we run virtual pain management programmes as opposed to face-to-face pain management programmes, and that is certainly something that's going to stay.


Can I jump in here? I think it shows the importance of proper integrated notes and systems, because lots of those people on this road of facing waiting times will be struggling in their homes, and they will be phoning their local councils, then, to get assessments from OTs and councils. So, it's that understanding that when that referral comes through social care, that social care can ask them for some sort of access to the NHS notes and systems where that's quickest and stuff, and understand that person is on the pathway. It stops duplication. It really solves the more efficient care, and obviously with the Welsh communication system, that's not right across Wales. So, it's really important that we emphasise communication to stop duplication of work as well.

Joyce Watson and then I'll come back to Gareth. Joyce Watson.

First of all, I'd like to thank the physiotherapists and the pain managers from when I managed to fall and break my arm, my hand, and do serious damage in the new year. From my own experience, I did use those online facilities. I did find them useful. But what I've learnt from experience is the join-up between pain management and physiotherapy. So, that's going to be my question, really, in the first place, because, from my experience, unless you can manage your pain, you can't do your physiotherapy because it gets in the way of being able to do anything at all. So, I suppose, from experience, that is going to be my question. Do you think that, in all cases, everywhere, that is joined up and being managed?

That's a good question, Joyce. I think it's a valid point. It is important. You're right—the pain and physiotherapy services are linked. I mentioned ESCAPE-pain, the programme that most health boards are running, which is effectively that kind of thing, helping people manage their pain and using exercise and self-management aspects of that to help people through their pain and issues. It varies across Wales, is the answer, Joyce. It's hard to tell whether everyone is actually getting that service. It has, I think, increased in the pandemic. There has been a focus on that work. But we do know that these services vary across Wales. It's been one of our long-term issues that we've raised with Welsh Government and in different inquiries and different evidence sessions in the past. It's the learning that something works in one health board that needs to be translated into learning across Wales—a common problem, I think, that most professions would say is the case.

Okay, thank you for that. I'm going to go on to engagement with the public. There was a report published by the Board of Community Health Councils saying that, for lots of people, facing long delays is no great surprise for diagnostics and treatment, and not knowing when their care might restart is causing, of course, a lot of angst and a lot of frustration, and that they start to feel forgotten—no great surprises. So, the improvements, they say, that should be made are to communicate between healthcare staff and people waiting for care and for treatment, to ensure that they don't feel isolated and forgotten. Do you think that those pathways are there, that they're working, or that they need improvement?


Can I jump in? Obviously, the waiting lists are quite big in certain areas, so the time you get reviewed is so long, and that's mainly part of the problem as well. So, if you're waiting two years, you might be booked in to be seen in a pre-assessment clinic by a physio, OT or podiatrist, and you'd have that opportunity to speak, but then, because they wait so long, that person, obviously, is waiting a long time. It's just that everyone is so busy at the moment and it's really difficult because they focus on the day-to-day job and the next patient—there's always the next one. So, there do need to be improved systems with our other colleagues from the NHS and social care. So, there are points where we do access the OTs and physios to get that communication, it's just that the scale at the moment is really, really difficult, Joyce, and, obviously, it's not working for a lot of the patients and we admit that.

Thank you. I think it's a very good question, Joyce, especially from your own experience. I think what I'd like to say there is that the prevention of persistent pain is probably something we need to do more about, especially when you talk about hand injuries, which, in some cases, can go on to complex regional pain syndrome. We have put a lot of emphasis on the prevention of this; why aren't the hospital, physiotherapists and occupational therapists creating information leaflets for patients who may have fractured their hands, so they don't need to have that fear of moving what they can, which is often, then, the reason why there's a longer term disability arising?

But in terms of keeping in contact with patients who have a long-term problem, I think this is very much an issue of just not having enough manpower to be talking to all these patients. We've certainly had the experience, over the lockdown, where the available staff who weren't redeployed did a lot of follow-up phone calls, medication reviews and psychological support, and those patients they were able to reach were eternally grateful. But there is just simply too much demand and too few people to actually deal with this.

Can I just come in there as well and agree with what Dai and Dr Christian have said? It's difficult, because it means front-loading staff, I think, to have those conversations and it's just time and resource for staff in health boards. We did write, with Versus Arthritis, to the health boards in Wales suggesting that at least health boards get in contact with patients and just tell them that they're on the waiting list. I think that was a concern of many patients; they just didn't know where they were, they didn't know if they were still on the waiting list. I think health boards were already doing that; they confirmed with us that, I think in most cases if not all of them, they were sending out a questionnaire to ask patients what had changed, how they felt about things and whether they needed extra support. So, that was good practice, I think.

There are examples of prehab now starting. I know of a service in Cardiff for people waiting for knee operations who are getting some rehab before their operation to put them in a better condition to go through the operation and come out the other side quicker, through the pathway. So, there are programmes out there where people are being seen earlier and having that time with a health professional before their waiting time has finished. Again, getting that across Wales consistently is the challenge. 

Which was my question: how do we get it across Wales? And, if you say it's a resource issue in terms of staffing, principally, there goes the challenge, I have to say.

The only other area I would want to explore is encouraging people who are on long waiting lists. How do we encourage those people to get some medical or other advice that might help prevent them deteriorating even further—if that's possible, of course, because it won't always be—before they are seen? We know that these lists are growing and that there is plenty of evidence out there that, if you have, say, for example, a knee that needs replacing, then it becomes a knee and a hip that need replacing—so, to stop that sort of deterioration. 


It's a very good question and we see that all of the time in persistent pain—that somebody starts with a knee issue and then develops hip issues, and then it's the back that is painful, so the whole thing, on a biomechanical basis, becomes a very big problem for individual patients. I don't know what the answer is to it, to be honest. Certainly, there has been a lot of information, material being developed that is available online—things like Live Well with Pain and Pain Concern. There's a lot of material that is freely accessible. Of course, it does need a degree of computer literacy, which I myself am lacking in a bit, so that is always a bit of a restriction.

But I think it does go back to the demand-versus-supply issue. From my own perspective, being an anaesthetist, and I have a very strong interest in regional anaesthesia, we have options to give to patients who are struggling with knee pain and with hip pain that can help these people to maintain activities or improve their muscular biomechanical abilities. But it is just taking so long for individual patients to actually get and access this service. I think it's one of the discussions that we are having separately. I think, Calum, you've been involved in that, to see what we can do with people on orthopaedic waiting lists who are actually waiting for knee replacements and struggle big time with pain that, maybe, is just localised around the knee but is really stopping them from being active and enjoying their life. 

Can I jump in there? It's about regional partnership boards and learning good practice from other areas. It could be quite as simple as that, actually. There are, maybe, services that are managing that better than others. Again, we talked about variations. The regional partnership boards were placed there to look at really good models of practice and then make them mainstream. So, really, putting that as a focus in the regional partnership boards, knowing that waiting lists are higher—.

The conditions that you talk about are conditions that our OTs, physios and speech and language therapists are already seeing. So, you've already got those people with a bad knee that's gone to a bad hip because the complexity has gone through the roof. But, we've got systems in place with the regional partnership boards that are meant to be upscaling good services, and I think we need to focus on that.

Yes, I think I'd agree with that. Swansea bay—Dr Christian was just mentioning it—have done a pilot to get people to exercise a bit more using a lifestyle programme. It has resulted in a reduction in knee pain for some patients and quite significant weight loss, which, obviously, helps then with stopping them deteriorating with other aspects of their bodies. So, it's about learning from a programme like that and getting it rolled out more nationally.

The other thing I'd add that makes it more difficult, which some physiotherapists have told me, is that the complexity, socially, of these patients has increased. So, they're more isolated, they haven't got support at home, social care is under stress. That's becoming a challenge. If that could be sorted, and I know that's a huge challenge across Wales, these people would have more support at home and would have people helping them read these leaflets and go online. But that's making the situation worse, so it is all falling on these kinds of programmes and the health boards to try to pick up on that problem.

Thank you, Joyce. Gareth, if you want to come back on mental health support questions, we've got about four or five minutes, if that's all right, before I come to Mike.

Yes, I'll keep it brief; thanks, Chair. Obviously, everything we've discussed this morning all has its mental health repercussions for patients, especially in light of the pandemic as well. I'm just trying to gauge and understand the accessibility of mental health services for patients and whether this improves their ability to change and adapt and make lifestyle changes, which Calum touched on then in his previous answer. I'm just wondering what the accessibility levels are at the moment, really, for people who are on these long waiting lists.


Our mental health occupational therapist waiting lists are quite reasonable at the moment, but that is because we've been seeing a lot of people virtually and issues like that. Again, there are good pilots in Wales; I know you're going to talk about the iCAN pilot in north Wales, but that is a specific pilot for mental health and how that interacts with physical health problems. So, there are good pilots out there. That should really be upscaled, but, again, it's getting access to OTs and physios and stuff at GP level, and understanding, in relation to mental health, and especially with regard to physical health, that lots of people do not need actually then to be referred on for 10 sessions of cognitive behavioural therapy; they just need that really practical support at the start, where they can get some help, and then that will stop referrals on to more statutory mental health services. So, just really looking at that as well. Psychological therapies are really important for the people that need them, but lots of people just need that one-off support from a therapist at GP level, so it's really important we focus on that. 

I'd agree with Dai. There's a definite link between pain and mental health; the research is out there to show that. Having multidisciplinary teams with psychology inputs, or mental health routes to refer in those settings is really important. And, again, I mention primary care; if we can catch people early in primary care, and refer people correctly there, using first-contact practitioners, people in advance practice, allied health professionals based in primary care, we can intervene earlier so that these issues don't become more complex later on. 

Thanks for that. Just a final question to finish off. It's a question mostly for Dai. It's just around the high demand for neurodevelopmental services across Wales, and whether you think that the Welsh Government's review on that will address some of those concerns. 

We're hoping so, and we're more encouraged about that. As I said, the service invited us to the latest meeting. So, the review is on, and they've sought us out at the moment—so, ourselves, speech and language therapists and physios were invited to the last meeting. Obviously, there are major issues with that area in relation to just resources and people on waiting lists for a long, long time. We want to emphasise it's not just the assessment of that person; it's the aftercare that really needs to be thought about as well. It's okay to get a diagnosis of a particular condition, but if we don't look at the help that we give after that, the service doesn't work. So, lots of people at the moment are not getting the interventions they need, and the demand and capacity review should really look at the capacity to be able to actually treat, not just to assess and diagnose. 

Thank you. Can I thank you for what you've said this morning, a lot of which I think has been very helpful? Can you get your managers to understand the importance of keeping patients informed? I get a lot of people who've been on a waiting list for two years saying, 'Have I been dropped off?' That's the first thing.

Self-management we've talked about quite a lot, and you talked about weight loss and exercise. Should more be being done on self-management of weight loss? Should we be trying to help patients to do other things? Do you need to reprioritise patients? If people have been waiting two, three years, some will have got a lot worse, some will have stabilised. Should you be reprioritising?

And what about the downside of having surgery? A number of older people, mainly women, who I've dealt with, were living in a bit of pain and at home, but able to cope, but, after two or three weeks in hospital after an operation on a knee, et cetera, they end up having to go into a care home. I know that Llanelli hospital used to explain to people the risks of having a knee working, and you would tick that off as a success, but the possibility is that you end up leaving your home for a care home, and some people would prefer to take the pain with pain management rather than end up in a home. 

Shall I start? First of all, our managers really do talk about the model of the traditional waiting list times, and how they are based from the GP to the consultant, and maybe that needs looking at in relation to where OT comes in, where physio comes in, and maybe it doesn't give a realistic measure of actually the process that needs to be there. So, if we just measure that very basic process of GP to consultant, you don't get the richness of all of that stuff that goes on. Constant review is important, but we've talked about this in the previous one—it's around staffing levels, and when you're on the daily grind, it's really, really hard. So, lots of the questions before that then in relation to actually how we communicate better, it may be something for the regional partnership boards and how they plan services.

With regard to 'Is surgery the best option?', we've got the Social Services and Well-Being (Wales) Act 2014 that all professionals are meant to be doing; it's that 'what matters to the person' conversation. And, again, do professionals have enough time to really do that properly in this current structure? Now, you can have a 'what matters' conversation for five minutes, or you can have a 'what matters' conversation for 30 minutes to get a bit more richness then of it. So, the legislation is there in relation to the social services and well-being Act, but the operational reality hasn't really caught up yet. So, you should have a conversation with your patient about what matters and the pros and cons. Surgery helps a lot of people. We are seeing now that people are so far into the waiting list, actually, it's causing major, major problems. So, it's that link between all the connections as well, but people should be having that 'what matters' conversation. 


If I could just add to Dai's point there. I agree, Mike, that the waiting lists are a blunt instrument, really; you can't really see the people behind them. As I said, I think it's been managed up until now on the basis that a lot of people have just been referred to self-management. They've had a short conversation, and that's a box ticked that they're now off the waiting list, and that's not a way we can continue. That might not be the best thing for every patient who's received that. So, it's important that we look at the patient in the round and look holistically at them. Physios and allied health professions in general would look holistically at the patient, not just the medical side—look at lifestyle, look at exercise. We probably need to, again, be more preventative in the future. That is part of the 'A Healthier Wales' strategy, so services are moving that way. It's just, I think, important, that we accelerate that to prevent people getting on waiting lists in the first place.

The key thing at the minute, again, is that when people try and access services, they might be waiting for several services. One individual might be waiting for several different types of rehab or several different medical interventions. We'd like to see some streamlining of that. So, if you look at cardio rehab, pulmonary rehab, lots of different types of rehab, you could have one multimorbidity rehab service for a patient, rather than them waiting for several different types of rehab. That would be better for the patient, and save the NHS time and money, if you had everything in one place for that patient. So, it's about doing things differently, bringing professions and services together at a good point for the patient to access, and staying with the programmes they're on instead of dropping off. Thanks, Chair. 

If I may, I totally agree with that. The whole concept of co-production is probably something that the medical world can improve on when it comes to assessing a patient for suitability of joint replacements or any other medical interventions. The problem, I guess, with co-production is that it needs to include, from the practitioner point of view, the knowledge of what else is available outside their own area of expertise. But I think the other area that we probably need to push on a little bit more as well in the public awareness type of thing is the onus on the patient. We need to move away in the NHS from waiting for something to be done to somebody to taking things into our own hands and trying to make the most of what we've got, and trying to push ourselves to be in a better place. We can talk for hours with a patient and discuss and try and support patients, for example, to lose weight, with simple things, but if the patient doesn't want to do that, then it's essentially a waste of resource. So, I think the patient buying in to what the health service is trying to support them for is a crucial aspect that we can work to develop a little bit more. 

I think the real problem we have is that far too many people think, 'It doesn't matter what's wrong with me, the health service will put it right. So, I can do anything I like and it doesn't matter'. You would say that it's our job rather than yours, but how do we change people's attitude so that you have some responsibility to your health? People look after their cars better than they do their health.


I totally agree and I think that needs to start in school.

Thanks, Mike. That was a good question to end on. If no Members have got any further questions—. No. Can I thank the witnesses very much for your evidence this morning? Thank you also for responding to the committee's evidence paper over the summer period. We'll send you a copy of the transcript, so please look over that and if there's anything you feel you want to add to help the session this morning or to help our piece of work, then please do let us know. But thank you to the witnesses this morning. Diolch yn fawr. We will take a 10-minute break and if we can be back just after 10:40.

Gohiriwyd y cyfarfod rhwng 10:31 a 10:44.

The meeting adjourned between 10:31 and 10:44.

3. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda Chynghrair Canser Cymru
3. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with Wales Cancer Alliance

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.

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.

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?

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. 

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.

Diolch yn fawr iawn, a bore da i'r ddau ohonoch chi. Dwi jest eisiau edrych ar y cwestiwn o adfer ar ôl COVID a gofyn yn benodol am yr arloesi sydd angen digwydd o hyn ymlaen er mwyn sicrhau bod mwy o bobl yn gallu cael triniaeth yn ddiogel ac yn amserol. Beth ydy'ch barn chi ynglŷn â'r prif feysydd lle mae angen arloesi? Gallai o fod yn creu ardaloedd COVID lite neu ysbytai COVID lite, ardaloedd COVID ddiogel, cryfhau sut ydyn ni'n profi staff a chleifion er mwyn gwella llif y cleifion, ac ati. Andy gyntaf.

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.

So, I think there are things that Wales did quite well early on. I think there are things that now we are falling behind on, and if we don't address that, then we're always going to be playing catch-up. For me—and I know other members of the Wales Cancer Alliance feel similar—the thing that we're really missing is a cancer strategy right now. So, we had the quality statement for cancer earlier in the year, which set out, for me, minimum standards for cancer services, not really thinking about what ambition should look like and how we really transform the way that we do things. Wales is soon going to be the only—. Once Northern Ireland launches theirs soon, Wales will be the only UK nation without a cancer strategy, and we must remember that the World Health Organization do recommend that every country has a cancer strategy. Until we have that it's really difficult to see what the pathway is for improvement and innovation in cancer services long-term. At a national level, there's lots of conversations against the quality statement happening at health board level and that we really should be thinking about some of this stuff as a 'once for Wales', not having to duplicate and do things seven times, or six times, depending on what it is.

And of course, I come back to the workforce question as well, because we can set up all these new pathways, we can invest in lots of equipment and stuff, but unless we've got the right staff in place to make that happen, it's not actually going to make the demonstrable difference that cancer patients are looking for.


Andy, diolch am yr ateb cynhwysfawr iawn, iawn yna. Richard, dwi ddim yn gwybod os oes gennych chi rywbeth i'w ychwanegu at hynny.

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.

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.


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.

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.

4. Papurau i’w nodi
4. Paper(s) to note

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.

5. Cynnig o dan Reol Sefydlog 17.42(ix) i benderfynu gwahardd y cyhoedd o'r cyfarfod ar gyfer eitemau 6, 7, 8 ac 11
5. Motion under Standing Order 17.42(ix) to resolve to exclude the public from items 6, 7, 8 and 11 of today's meeting


bod y pwyllgor yn penderfynu gwahardd y cyhoedd o'r cyfarfod ar gyfer eitemau 6, 7, 8 ac 11 yn unol â Rheol Sefydlog 17.42(ix).


that the committee resolves to exclude the public from items 6, 7, 8 and 11 of today's meeting in accordance with Standing Order 17.42(ix).

Cynigiwyd y cynnig.

Motion moved.

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.

Derbyniwyd y cynnig.

Daeth rhan gyhoeddus y cyfarfod i ben am 11:30.

Motion agreed.

The public part of the meeting ended at 11:30.


Ailymgynullodd y pwyllgor yn gyhoeddus am 12:59.

The committee reconvened in public at 12:59.

9. Effaith yr ôl-groniad o ran amseroedd aros ar bobl sy'n aros am ddiagnosis neu driniaeth: sesiwn dystiolaeth gyda sefydliadau sy’n cynrychioli pobl â gwahanol gyflyrau iechyd
9. Impact of waiting times backlog on people who are waiting for diagnosis or treatment: evidence session with organisations representing people with different health conditions

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.

Diolch yn fawr iawn. Prynhawn da. At Elin Edwards o'r RNIB mae fy nghyfres i o gwestiynau wedi'u hanelu. Allwn ni, jest yn gyntaf, gael rhyw drosolwg gennych chi o le dŷn ni arni o ran rhestrau aros offthalmoleg erbyn hyn, ac, o bosib, cymharu efo'r sefyllfa cyn mynd i mewn i'r pandemig hefyd?

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?

Diolch yn fawr iawn am y cwestiwn. Mae'r sefyllfa efo colled golwg yng Nghymru'n un diddorol. Os caf i roi bach mwy o gyd-destun hefyd, mae'r gwasanaethau pan fydd hi'n dod i ofal llygad yn rhai o'r rhai prysuraf yng Nghymru. Dŷn ni'n gweld 11 per cent o bob un o'r apwyntiadau out-patient, ac mae hwnna'n rhywbeth sy'n mynd i gynyddu'n sylweddol dros yr 20 mlynedd nesaf. Yn ddiddorol iawn, ers 2018, mae gofal llygad yng Nghymru wedi cymryd beth rŷn ni'n galw'n 'risk-based approach', a hwnna ydy'r gwasanaeth cyntaf i wneud hynny. Mae cleifion yn cael—esgusodwch fi am y Saesneg y byddaf i'n ei defnyddio yn fan hyn hefyd—mae pob claf yn cael health risk factor, sydd yn dangos pa mor ddifrifol yw'r cyflwr sydd ganddyn nhw. Mae'r un uchaf wedyn yn HRF1, ac os ŷch chi'n cael HRF1, wedyn, mae hynny'n dangos bod gennych chi gyflwr difrifol ac mae'n hanfodol bwysig bod eich dyddiad personol chi'n cael ei guro. Yn fras iawn, os dŷch chi ddim yn curo hwnna, mae'r claf yn gallu colli'i olwg yn sylweddol, ac mae hwnna'n dangos pa mor bwysig, felly, ydy'r driniaeth yna.

Fel rhan o hwnna, felly, mae'r mesurau cenedlaethol o ran gofal llygad yn dangos y dylai 95 y cant o gleifion HRF1 gael eu gweld o fewn yr amser aros clinigol yna—rhywbeth personol i'r claf fydd hwnna. Mae byrddau iechyd yn gorfod adrodd yn ôl yn fisol ar y rheini. Beth sy'n ein pryderu ni ar hyn o bryd yw bod yna dros 70 y cant o gleifion yn y system yn cael eu hadnabod fel HRF1. Felly, mae hwnna'n swm sylweddol pan fyddwn ni'n edrych ar bawb sydd yn y system, ac mae dros hanner y cleifion HRF1 yn aros dros yr amser sy'n dderbyniol ar gyfer eu hapwyntiad nhw.

Felly, mae'r mesurau'n dangos i ni mewn ffordd eithaf unigryw ba mor sylweddol yw'r rhestr aros. Roedd yna grisis cyn y pandemig, a fyddwch chi ddim yn synnu clywed bod cynnydd mawr wedi digwydd dros y cyfnod yna hefyd. Felly, rŷn ni'n gwybod bod yna golled golwg wedi digwydd, ond eto, dŷn ni ddim wedi gweld seis hwnna eto. Felly, dyna ydy'r sefyllfa o ran amseroedd aros yng Nghymru.

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.

Diolch yn fawr iawn. Ac mi ddylwn i ddiolch hefyd i chi am anfon gwybodaeth briffio ymlaen llaw yn nodi rhai o'r ffigurau yna. Pa fesur sydd yn mynd ymlaen ar hyn o bryd er mwyn trio deall faint yn waeth mae pethau wedi mynd, achos mae rhai o'r ffigurau rydych chi wedi'u crybwyll yn fanna'n bryderus iawn? Os ydy'n hanfodol bod pobl yn yr haen risg uchaf yn cadw at eu hamserlen apwyntiad a bod yna gymaint ohonyn nhw'n methu, mae hynny'n golygu bod cyfran sylweddol mewn peryg o golli'u golwg. Sut dŷn ni'n trio mesur yn union ba mor ddrwg mae pethau'n mynd?

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?

Dwi'n meddwl byddwn ni'n disgwyl gweld y sefyllfa'n dod yn fwy amlwg dros y misoedd nesaf, fel mae cleifion yn dechrau mynd yn ôl mewn i'r clinig. Beth sy'n ein pryderu ni hefyd yw bod y mesurau sy'n cael cu cyhoeddi bob mis yn dangos newid mawr ar draws byrddau iechyd. Felly, un o'r pethau sy'n ein pryderu ni, er enghraifft, yw bod one third o'r cleifion HRF1 yng Nghaerdydd yn aros dros eu targed nhw, ond eto, drws nesaf, yng Nghwm Taf Morgannwg, mae yna dros two thirds yn aros i gael eu gweld. Felly, eto, mae yna bryderon ble bynnag ydych chi ar y ffin, ond mae angen esboniad i ddeall pam mae cymaint o wahaniaeth yn yr amseroedd aros yna. Mae'r sefyllfa'n debyg ar draws Cymru hefyd.

Un o'r pethau, jest i ddod yn ôl i'ch pwynt chi hefyd efo dod i ddeall nifer y bobl sydd yn aros, un o'r pethau sy'n ein pryderu ni, efallai, yw faint mae cleifion yn ei ddeall a faint o effaith mae'r aros yn mynd i'w chael arnyn nhw. Does neb yn mynd i ddeall os ydyn nhw'n HRF1 neu ddim, ac mae hynny'n rhywbeth sydd yn codi pryder. Mae pobl wedi arfer aros, ac rŷn ni'n clywed o ddydd i ddydd, 'Fe wnaf i aros i fynd i'r clinig, i wneud yn siŵr bod y sefyllfa yn iawn pan fydda i'n gweld y doctor'. Ond, eto, mae colli golwg—mae'r ffaith ei fod e [Cywiriad: 'yn aml'] jest ddim yn brifo—mae aros yn rhy hir yn gallu cael effaith sylweddol ar eu bywydau nhw.

Un o'r pethau diddorol rŷn ni wedi dechrau gweld hefyd yw'r cynnydd mewn pobl sy'n cysylltu â'r RNIB i wneud efo cataracts. Mae cataracts yn draddodiadol yn rhywbeth sydd â risg eithaf isel. Mae'n rhywbeth rŷn ni'n gallu ei drin. Ond, rŷn ni yn clywed am gleifion nawr sydd yn aros mor hir bod cryn dipyn o'u golwg wedi mynd. Rŷn ni hefyd yn clywed am rai o'r cleifion yma yn cael eu hanfon ymlaen at y gwasanaeth arbenigol vision rehabilitiation—y gwasanaeth gofal yn y gymuned. Ddylen nhw ddim fod yn aros, ac mae hynny'n dangos i chi effaith yr amser hir iawn i aros, sydd wedyn yn creu sefyllfa ddifrifol jest drwy fater yr aros.

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.


O feddwl bod gennym ni'r ffordd risk based yma o edrych ar y perygl y mae cleifion yn ei wynebu, oes modd blaenoriaethu pobl mewn ffordd wahanol, achos dyna rydyn ni'n ei weld yn digwydd mewn gwasanaethau eraill o fewn ein gwasanaeth iechyd—ymdrech i drio blaenoriaethu, gweld pwy sydd angen cael triniaeth ar fwyaf o frys? Oes angen blaenoriaethu mewn ffordd wahanol efo cleifion offthalmoleg hefyd?

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?

Dyna ydy'r her pan fydd pawb yn troi mewn i flaenoriaeth, wrth reswm. Os yw COVID wedi gwneud unrhyw beth da o ran gofal llygad, un o'r pethau rŷn ni wedi'i weld ydy'r Llywodraeth yn prysuro faint o newid sydd yn mynd i ddigwydd yn y gymuned. Felly, y gobaith yw y bydd optometry ar y stryd fawr yn fwy o triage system fel eu bod nhw'n gallu gweld mwy o bobl yn agos i'w cymuned nhw, ac mae hynny'n rhywbeth rŷn ni'n ei groesawu ac rŷn ni hefyd wedi bod yn ei wthio ers amser hir, ond, oherwydd y pandemig, mae hynny wedi dechrau digwydd nawr.

I ni, yn amlwg, mae'n bwysig bod hynny'n digwydd yn sydyn. Fel mae'r newidiadau mawr yma'n digwydd i optometry, mae'n bwysig bod hynny'n cael ei gyfathrebu i'r cleifion, a'r gobaith yw y bydd hynny'n dechrau rhyddhau mwy o gapasiti yn secondary care wedyn. Ond, hefyd, mae yna broblemau lot yn fwy eang sydd angen eu hadnabod a'u datrys. 

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.

Y cwestiwn olaf gen i, efallai: oes gennych chi hyder yn beth rydych chi'n ei weld yn cael ei wneud gan fyrddau iechyd a'r Llywodraeth, a'u bod nhw'n gwneud beth sydd ei angen er mwyn buddsoddi i gynyddu capasiti er mwyn delio â'r backlog sydd wedi tyfu? Ydych chi'n hapus â lefel ac urgency y buddsoddiad sy'n mynd ymlaen ar hyn o bryd?

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?

Dwi'n meddwl, o reidrwydd, oherwydd sgêl y broblem ac oherwydd y niferoedd erchyll y soniais i amdanyn nhw yn gynharach, mae'n rhaid i hwn gael ei weld yn flaenoriaeth. Mae e hefyd yn rhywbeth sydd ddim yn mynd i ffwrdd, ac mi wnes i sôn yn gynharach bod angen edrych ar bethau urgent, ond hefyd mae'r niferoedd sydd yn mynd i fod yn byw efo colli golwg yn mynd i fyny drwy'r amser, felly mae angen datrys y sefyllfa pan fydd hi'n dod i gapasiti.

Rŷn ni'n croesawu'r newidiadau sydd yn digwydd o ran symud i'r gymuned, fel gwnes i sôn, ond mae angen i hwnna ddigwydd ar frys. Mae yna wahaniaethau ar draws byrddau iechyd. Mae angen deall y rheini'n fwy; mae angen i'r Llywodraeth ddeall pam mae'r gwahaniaethau yno. Buaswn i'n tybio bod y byrddau iechyd yna sydd wedi dechrau gwneud mwy yn y gymuned efallai â rhestrau aros llai, ond mae angen y manylder yna ar hyn o bryd. Rŷn ni'n gwybod ei fod e'n complex iawn hefyd ac mae'n rhywbeth sydd angen mynd i'r afael ag ef. Ac rŷn ni yn croesawu'r gwaith sy'n digwydd, fel y gwnes i sôn, yn optometry.

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. 

Ond, fel mae'n sefyll, mae yna bobl allan yna sy'n wynebu colli eu golwg oherwydd y cynnydd mewn rhestrau aros.

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


Oes, mae hwnna'n mynd i fod yn ffaith. Dŷn ni'n gwybod bod pobl wedi colli'u golwg dros yr amser yma, ond dŷn ni ddim yn gwybod faint. Beth dŷn ni'n clywed, fel yr RNIB, yw'r effaith emosiynol sydd yn dal i barhau. Er enghraifft, mae gennym ni wasanaeth eye clinic liaison officer, sydd yn rhywbeth dŷn ni wedi bod yn ei weithredu ers dros 20 o flynyddoedd ar draws y wlad, ac rŷn ni'n gwybod bod y math o bethau mae pobl yn cysylltu amdanyn nhw efo nhw yn dangos pa mor hanfodol yw'r gwasanaeth yna. A'n gwasanaeth cwnsela ni, er enghraifft, mae hynny wedi bod yn reit brysur, ac mae rhestr aros gyda ni ar gyfer hwnna o dros naw mis. Felly, mae'n dangos bod yr angen yna.

Ac fel dŷn ni'n gwybod—efallai un peth arall jest i sôn amdano fe hefyd—mae'r effaith mae'r pandemig wedi ei chael ar bobl sydd yn byw efo colled golwg efallai yn unigryw hefyd. Pan fyddwch chi'n meddwl am jest symud ar hyd ein trefi ni, efo pellter cymdeithasol, efo cymryd public transport ac yn y blaen, mae yna lot o'r heriau yma'n gallu bod yn unigryw i bobl sydd â cholled golwg. Mae gennym ni bach o ymchwil efallai y byddwn i'n medru sôn amdano fan hyn, sydd jest yn dangos yr effaith mae hwnna wedi'i chael ar bobl yn emosiynol. Mae gennym ni 56 y cant yn dweud wrthym ni eu bod nhw nawr yn teimlo'n anxious am y dyfodol, a 47 y cant yn teimlo'u bod nhw wedi ynysu oddi wrth bobl eraill oherwydd y newidiadau yma. 

Dŷn ni'n gwybod, felly, fod hwn yn mynd i gael effaith ar ofal iechyd meddwl, ac mae hwnna eto'n rhan o'r package yma ac yn rhywbeth bydd yn rhaid i ni ddeall yn fwy. 

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. 

A gaf fi eich gwahodd chi i rannu'r ymchwil yna efo'r pwyllgor? Buaswn i'n ddiolchgar iawn. Fe adawn ni hi yn fanna, Elin, diolch. 

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. 

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, 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.


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.