Y Pwyllgor Iechyd a Gofal Cymdeithasol

Health and Social Care Committee

14/03/2024

Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Gareth Davies
Jack Sargeant
Joyce Watson
Mabon ap Gwynfor
Russell George Cadeirydd y Pwyllgor
Committee Chair
Sarah Murphy

Y rhai eraill a oedd yn bresennol

Others in Attendance

Chris Brown Cymdeithas Fferyllol Frenhinol
Royal Pharmaceutical Society
Dr Nick Wilkinson Coleg Brenhinol Pediatreg ac Iechyd Plant
Royal College of Paediatrics and Child Health
Dr Nicky Leopold Cyngor Cymdeithas Geriatreg Prydain yng Nghymru
British Geriatrics Society Wales Council
Elen Jones Cymdeithas Fferyllol Frenhinol Cymru
Royal Pharmaceutical Society Wales
Fôn Roberts Cymdeithas Cyfarwyddwyr Gwasanaethau Cymdeithasol Cymru
Association of Directors of Social Services Cymru
Jacqueline Davies Cymdeithas Cyfarwyddwyr Gwasanaethau Cymdeithasol Cymru
Association of Directors of Social Services Cymru
Mathew Norman Diabetes UK Cymru
Diabetes UK Cymru
Sarah Jane Waters British Association of Social Workers Cymru
British Association of Social Workers Cymru

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Angharad Lewis Ymchwilydd
Researcher
Claire Morris Ail Glerc
Second Clerk
Lowri Jones Dirprwy Glerc
Deputy Clerk
Philippa Watkins Ymchwilydd
Researcher
Sarah Beasley Clerc
Clerk
Sarah Hatherley Ymchwilydd
Researcher

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 09:33.

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

The meeting began at 09:33.

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

Bore da. Croeso, bawb. Welcome to the Health and Social Care Committee this morning. As always, we operate bilingually, in Cymraeg and in English. Today, we have some Members and witnesses attending virtually, and some here on the Senedd estate. We'll move to item 1. We have no apologies this morning, and if there are any declarations of interest, please say now. No, there aren't.

2. Cefnogi pobl sydd â chyflyrau cronig: sesiwn dystiolaeth gyda ADSS Cymru a BASW Cymru
2. Supporting people with chronic conditions: evidence session with ADSS Cymru and BASW Cymru

In that case, I move to item 2. Item 2 is our fourth evidence session, to inform the next phase of our work on our chronic conditions inquiry. We have three witnesses attending committee this morning—all virtually. So, I'd be grateful if you could introduce yourselves for the public record. If I come to Sarah first.

Hi. Sarah Waters, I'm on the national standing committee for the British Association of Social Workers Cymru, and also I'm an expert, by experience, in having a chronic pain condition.

Fôn Roberts, pennaeth gwasanaethau plant a theuluoedd, yma yng Nghyngor Sir Ynys Môn.

Fôn Roberts, head of service for children and families, here in Isle of Anglesey County Council.

Diolch yn fawr. And Jacqueline. Jacqueline, do you want to introduce yourself?

Hi. Morning, everyone. I'm Jacqueline Davies. I am the head of adult social care in Bridgend County Borough Council, but today I'm representing the Association of Directors of Social Services, and I'm the vice-chair of the all-Wales heads of adults' services group as well.

09:35

Thank you very much for all being with us, I appreciate your time. Diolch yn fawr. The first set of questions this morning is from Sarah Murphy. 

Good morning, everyone. Thank you for being here today with us. I'm going to start off, as is appropriate, I think, by asking some questions about person-centered care. To begin with, the committee has heard that holistic care with different services wrapped around the individual is essential for supporting people living with chronic conditions. Could you share some examples of good practice where holistic support is provided for people living with chronic conditions? Thank you. Who would like to go first?

Thank you very much for that question. I think person-centered care is at the heart of what we do in social care in Wales, isn't it? The aspirations that are set out in the Social Services and Well-being (Wales) Act 2014 as well as 'A Healthier Wales' give us a really good framework to enable that to happen. I think if I had an aspiration, it would be to make all of that seamless care real on the ground for Mrs Jones, the parent of a child with long-term conditions. It would be to make that real for them.

There are examples across Wales where we have integrated teams that work directly in the community, and those teams are made up of health and social care professionals. What we find when we've got those teams that work effectively on the ground is that they manage to support individuals and give them the right information by the right professional at the right time and they're able to support people and sustain them in the community. That range of professionals stems from primary care, from our GPs, our district nurses, social workers, but also our support workers on the ground.

Some fundamental professions that we need to support people are our therapists, whether that's occupational therapists, whether that's in physical health or in mental health, as well as our speech and language therapists, our dietetics, our physios, because that's what helps people to maintain as their conditions deteriorate. It's about having very personal plans with individuals, and plans for their future as well, so as their conditions deteriorate we've got contingency plans in place, and that that person is at the heart of making those choices for themselves. That's something that we promote in social care right at the grass-roots level. So, that's from an adults perspective.

Bore da. Mae'n debyg iawn o ran yr ochr plant hefyd, buaswn i'n dweud. Does dim llawer o wahaniaeth weithiau, dim ond yr oedran sydd yn wahanol. Beth rydyn ni'n gweld ydy profiadau lle rydyn ni'n medru cydweithio efo ein partneriaid. Ac mae'n rhaid inni gofio nad jest iechyd ydy'n partner ni yn y fan hyn—rydyn ni'n gweithio'n agos yn y maes plant efo'r adran addysg ac ysgolion arbennig. Rhaid i ni gofio fod yna gyfleusterau gwych yn rhai o'n hysgolion arbennig ni, ac mae'n bwysig ein bod ni'n cael mynediad atyn nhw. Rydyn ni hefyd yn gweithio'n agos efo'r hosbisau lleol os ydy'r cyflwr yn dirywio i'r ffasiwn graddau lle rydyn ni angen cael y gefnogaeth o'r fan yna. Felly, mae hwn yn ehangach na dim ond iechyd a gwasanaethau cymdeithasol. Diolch.

Good morning. It's very similar in terms of children, I would say. There's not much difference sometimes, it's just the age that's different. What we're seeing are experiences where we can work with our partners. And we have to remember that it's not just health that is our partner here—we work closely in children's services with education and special schools. We have to remember there are some excellent facilities in our special schools, and it's important that we have access to them. We also work closely with local hospices if the condition deteriorates to such a state where we need support from them. So, this is broader than just health and social services. Thank you.

Yes. If you're talking about good care, person-centered care, and good examples, I think the best example that I've personally seen has been between my GP and a man called Dr Laurence Gray, who is a pharmacologist in Llandough, and also Jo Hampson, who runs the pain clinic. For me, because I was misdiagnosed for years and years and years, and it's very complicated in that it affects every body system, it means that there's a lot of misdiagnosis and there's a lot of professionals not engaging with each other, so it means that you end up with a polypharmacy approach, thousands of consultants, seemingly, and you're not getting that person-centred care because there is nobody co-ordinating it. It was only after a proper diagnosis, unfortunately in England, and then after going to Stanmore for a residential three-week course, where I learnt how to have the tools to treat this disorder—. Again, it was a team, with physiotherapists, nurses, even a psychotherapist heading it up, and that was excellent. And then, I could transfer that back to Cardiff. I went to see the pain clinic and I gave them a talk about what I'd learnt there, but that really did kick off everything. And I have to say, seeing Laurence Gray changed my life, because he was able to co-ordinate with my GP and people to make sure that I wasn't taking this cacophony of awful pills. Seemingly, there were more side effects from taking all of these things together than what the actual conditions were causing. So, that's my personal experience of that.

09:40

Thank you so much, Sarah, for sharing your lived experience, because it is always very, very helpful and powerful. You touched a little bit on my next question, which was going to be looking at the key challenges that exist in creating a care system that does deliver that person-centred care, and, as you already did, looking at what the solutions to those problems are. Is there anything else that you can identify? Because that three-week programme does sound tremendous.

It was, and I was very lucky, and I fought for funding for it for a long time. I think it's important that you're getting this holistic approach, so you're getting everything looked at at the same time, instead of having a variety of different specialists when it comes to pain. I think, for anybody who's got a condition that causes pain, it fluctuates, and that means that engaging with other Government departments, maybe in Westminster, can be very difficult, because what they want is a binary tick-box solution that says that you're either in pain all day, or you can do this all the time, but you can't. You can't commit to that, because then you're falling foul of their rules. I think that's quite challenging as well. And, of course, pain isn't a stand-alone thing, there are different types of it and how it affects people is always very personal. It's really difficult to co-ordinate all of that. To bring health and social care together I think is the most important thing, because it means you've got a group of professionals all working together. I think that's really, really important; they're not stand-alone items and they should be combined.

Thank you. Before I ask Fôn and Jacqueline to come in on that about the kinds of challenges and how to overcome them, can I also just add on and get your thoughts on whether you think regional partnership boards and the health and social care regional integration fund have had an impact on integrating the services? It would be great to get that insight, too.

I don't know. I can't directly comment on that, because it's not something that I know a lot about. I haven't seen any benefit of that within my world. Everything that I've got is because I've either had somebody I know who's said, 'Right, okay, I really think you need to investigate this', or I've gone and found out for myself. So, I haven't seen the direct benefits of that, really.

Thats quite a wide-ranging question, really, so if I just take the parts and see where that takes us. In terms of the key challenges in the current system, we do have frameworks in Wales; we're very lucky with our legislation and our vision for health and social care. What I feel we need to do now is make those aspirations into reality on the ground, as I said in my opening answer. 

If I was trying to think about what that would look like, the RPBs are a mechanism to do that and there are some great examples across Wales where we have pockets of really good integration that's centred around a person and where that care is co-ordinated. Thank you, Sarah, for your lived experience example—that's about care co-ordination in all its forms, and it's to not silo people into a medical model; it's looking at the wider thing. So, that's what we need, and we need to give our staff and our professionals who are working on the ground the tools to be able to do that job. Because my experience is that that's what people want to do when they're out, when they're on the patch and they're out in their communities. 

If you think about it, there are a couple of areas. On population health, under the Social Services and Well-being (Wales) Act 2014, we've got population needs assessments that the RPBs co-ordinate. What we need is the right resources to be able to meet those needs. So, if we've got people in our communities—and we've got a wealth of different communities here in Wales, haven't we—that need different things in different parts of Wales, it's about allowing local government and the wider partners to be able to deliver on those things. When we talk about austerity and finance, and I know that's not the subject for today, that's always going to be—. Because what happens is that, when resources are tight, people pull back down to their core business, and then those innovations and things can be stifled in terms of that.

If we start with keeping our population healthy, that's the starting point for anybody with care and support needs and people living with chronic conditions. What we've got then is the whole easy access to get the diagnosis, and then it's what support, following diagnosis, an individual needs. We do hear stories and proper lived experience of people who get diagnosed and then there's no support offered to them and then they're out in the community. They might come to the attention of social services or the GP two or three years later, but there's a missed opportunity there in terms of right time, right information, right professional.

In order for us to change, then, in terms of going forward, as I said, we've got lots of examples of integration on the ground, but it's not for whole populations and it's not widespread, really. So, it's about enabling us as partners—that could be health, education, police, probation, all of the public sector bodies—to have the tools to be able do that. So, protecting resources under some framework would help us in terms of doing that. What we need are models of care that respond to urgent situations, so if an individual has a deterioration, we need to be able to respond in a very urgent way, wrap professionals around that person, assess them, treat that person if that's appropriate, get them back on their feet and get them back living their lives in their community—

09:45

I'm so sorry, Jacqueline, but I'm just conscious of time a bit. Thank you so much for your detailed answers. It's so frustrating, but we've got quite a few other areas to go through as well. Sorry, Jacqueline. Sarah, are there any other pressing questions you have?

No, that was it, but I do really appreciate it, and you will get to, I think, touch on a lot of the things that I've already raised as well throughout the questions coming. Thank you very much.

I did interrupt you, Jacqueline; is there anything else you wanted to just finish with briefly?

Sorry for that, again. I think some Members might want to come in and pick up on some of what you were saying in some of their questions, as well. Thank you, Sarah. Gareth Davies.

Thank you very much, Chair. Good morning, everybody. Bore da. The number of people living with multiple chronic conditions is predicted to rise. How should social services adapt to manage the increasing complexities, and how robust are social services at the moment to deal with a predicted rise in multiple chronic conditions?

I should say as well we're not expecting every witness here to answer every question, just whoever thinks they're the most appropriate. Fôn Roberts. 

Diolch am y cwestiwn. Mae o'n heriol. Dwi'n meddwl bod yn rhaid inni fod yn onest yn fan hyn. Mae o'n heriol iawn inni fedru cario ymlaen i gyfarch y gofyn sydd allan yna ar y funud. Mae pob awdurdod wedi gweld cynnydd yn nifer yr unigolion sy'n dod i ddrysau gwasanaethau cymdeithasol. Mae hynna'n oedolion a phlant. Mae yna gynnydd ar draws y ddau wasanaeth.

Beth hefyd sy'n ychwanegu at y cynnydd yna ydy cymhlethdod yr unigolion sy'n dod aton ni. Rydyn ni'n gweld pobl, efallai, efo nifer o gyflyrau yn dod aton ni, fel sydd newydd gael ei ddweud. Os oes yna rywun yn cael diagnosis, mae'n bwysig nad ydyn ni ddim yn mynd lawr y medical model yn fan yna; mae angen inni edrych ar anghenion cymdeithasol yr unigolyn, iechyd meddwl, pa therapi sy'n gallu mynd i mewn. Felly, mae'r cymhlethdod yn dod yn lot mwy amlwg rŵan hefyd.

Beth sydd gennym ni ddim ydy cynnydd mewn arian—yn anffodus mae'n rhaid inni siarad am arian—felly mae'n mynd i fod yn anodd iawn i awdurdodau lleol gario ymlaen i gynnig beth fedran nhw efo'r adnoddau sydd ddim yn dod drwyddo yn y system. Mae'n amser inni efallai ailedrych ar beth rydyn ni'n gallu ei gynnig a sut ydyn ni'n medru cynnig pethau'n wahanol efo'r arian a'r adnoddau sydd gennym ni.

Gan fynd yn ôl at bwynt Jacqueline, rydyn ni'n gweithio mewn timoedd sydd yn integredig, ond ydyn nhw wir yn integredig? Mae gan rywun o'r gwasanaethau cymdeithasol fathodyn rownd eu gwddf yn dweud, 'Gwasanaethau cymdeithasol ydw i ac mae gennyf i thresholds penodol', ac mae unigolyn sy'n gweithio i'r bwrdd iechyd efo'r un un heriau o'u blaenau. Felly, mae o'n anodd, ac mae hwnna’n rhywbeth rydyn ni angen ei adnabod, a dweud y gwir, fod yr her yma yn un gwir—mae o'n digwydd o ddydd i ddydd yn ein meysydd ni ar draws Cymru, a dydy o ddim yn faes hawdd i fedru ymateb iddo fo.

Thank you for the question. It's challenging. I think we have to be honest here. It is very challenging for us to carry on to meet the demand that's out there at the moment. Every authority has seen an increase in the number of individuals who knock on the doors of social services. That's children and adults. There's an increase across both services.

Also, what adds to that increase is the complexity of those cases. We are seeing people, perhaps, with multiple conditions, as has just been mentioned. If somebody has a diagnosis, it's important that we don't go down the medical model there; we need to look at the social needs of the individual, their mental health, what therapists can help. So, the complexity is becoming more prevalent now. 

Unfortunately, we have to talk about money. There is no increase in money, in funding, so it's going to be very difficult for local authorities to carry on to offer what they can with the resources that aren't coming through the system. So, it's time for us, perhaps, to look again at what we can offer and how we can offer things in a different way with the resources and funding that we have.

Going back to Jacqueline's point, we are working in teams that are integrated, but are they really integrated? Someone from social services has a lanyard saying, 'I am social services and I have certain thresholds', and the individuals working for health boards have the same challenges facing them. So, it is difficult, and it is something that we need to identify, really, that this challenge is a real one—it is happening every day in our areas across Wales, and it's not an easy area to be able to respond to.

09:50

Diolch am yr ymateb, Fôn.

Thank you for that response, Fôn.

Individual care plans enable people living with chronic conditions to be equal partners in the decisions in their care and support. Do you think there's enough awareness generally of them in all areas of health and social care, and if not, what can we do better to improve that? So, maybe we can work those gaps in funding under a model of person-centred planning to make services more reflective of individual needs that might potentially cost an awful lot of money to do just the right sort of provision and person-centred direction that a care service might need to best reflect the needs of the patient.

Jacqueline, you were looking like you wanted to comment on the last question, but do you want to comment on this question and the previous question as well?

Yes. I suppose, in terms of individual care plans, it's a requirement under the Act in social care for us to be equal partners in that. I would say that there are pockets of really good practice where it is health and social care and the individual that are part of that, but it's not across the whole system, and that is something that we could work towards doing.

In terms of the previous question, in terms of the predicted rise in people with chronic conditions or care and support needs in Wales—well, in the UK, really—it is a challenge, and resources are a challenge, and as we know when resources are tight, people revert to prioritising need, don't they, based on the money that they've got to do that. What we are seeing around continuing health care is a decrease in the spend on CHC in parts of Wales, and that doesn't marry with an increase in terms of predicting numbers rising as well, really. So, individual care plans and individual care co-ordination is the key, really, to supporting individuals in the community.

Thanks, Jacqueline. I just wanted to pick up on a couple of answers you made there. I'm not intending it to be a name-and-shame exercise, but if you are able to identify which particular areas are not currently or—. I don't know what the situation is—are they not using person-centred care, or what's the reason behind that? And are there are any specific ones that you think could improve that person-centred approach? Obviously, it's within the guise of trying to identify and take certain recommendations that we can push forward as a committee, really.

And then also as well, there's the role of CHC that you mentioned, the drop in funding, but we've also had the introduction of Llais as well. So, what are the sort of dynamics around that? Yes, we've seen the drop in funding for CHC, but we've also seen the introduction of a new service, which aims to do a similar thing. So, how do you see that best working going into the future?

Okay. In terms of what I said, what we actually need is integration on the ground, isn't it, in terms of that. And again, there are pockets of that under the RPB where that's working really well. I suppose what I'm saying is we need to expand that across adults and children, and I think that'll be different in different regions across Wales, really, in terms of that. So, that's that bit.

In terms of CHC, I know there's a working group on CHC, and we're at that table as ADSS in terms of that, trying to work through that system, really. 

Sarah, you wanted to come in. Sorry, I'll bring Mabon in first, because it's probably on this point, and then come to you, Sarah. Mabon.

Yn sydyn iawn, diolch, gan obeithio bod pawb yn clywed y cyfieithu. Ar y pwynt—roedd Jacqueline wedi nodi ambell waith yr RPBs, a Fôn wedi cyfeirio at bwysau ar lywodraeth leol. Cwestiwn y tu hwnt ychydig i remit y drafodaeth, ond ydych chi’n meddwl ei fod o'n beth da bod gyda ni saith bwrdd iechyd ond 22 corff llywodraeth leol, ac a oes angen alinio'r ddau beth yn well?

Very quickly, thank you, and hopefully everybody can hear the interpretation. On the point—Jacqueline noted the RPBs, and Fôn referred to pressures on local government. A question that's perhaps broader: do you think that this is a good thing that we have seven health boards, but 22 local authority bodies, and is there a need to align both better?

09:55

That's a huge question, really, isn't it?

I think I've already said that local government are best placed, really, aren't they, in terms of those public health determinants and supporting our communities. So, I'm not sure I can answer that question with a 'yes' or 'no' answer, if I'm honest.

Efallai yn gryno. Fel un sy’n gweithio yn un o’r cynghorau sydd efo’r bwrdd iechyd mwyaf—dŷn ni’n un o’r chwech—mae o’n bwysig mynd yn ôl at bwynt Jacqueline: dydy'r gwasanaethau sydd yn cael eu cynnig, efallai, yn Wrecsam ddim yn mynd i ffitio beth sy'n gweithio yn Ynys Môn neu yng Ngwynedd, er enghraifft. Felly, mae’n rhaid inni gael yr elfen leol yna a bod yn barod i ymateb i ofynion pobl leol ac anghenion pobl leol. Felly, mae hwnna'n anferth o gwestiwn ac mae'n siŵr bod hwnna'n haeddu awr ei hun i'w drafod. Ond mae yna heriau, ond dwi'n meddwl mai'r hyblygrwydd ydy'r peth pwysig.

Perhaps briefly. As one who works in one of the councils that has the largest health board—we're one of the six—it is important to go back to Jacqueline's point: the services that are perhaps being offered in Wrexham aren't going to fit with what works in Anglesey or Gwynedd, for example. So, we have to have that local element and be ready to respond to the requirements of local people and their needs. So, that is a massive question and I'm sure that deserves an hour itself to discuss. But there are challenges, I think, but flexibility is important. 

Thank you. I know, Sarah, you've been waiting to come in on other points, so go ahead, Sarah.

Yes, it's around all of this. Unpaid carers in this country—I think it was a report by Carers UK a couple of years ago—are saving the UK economy £160 billion a year and not being recognised, and they are doing that under the radar. We've got our care needs that are increasing—I think this needs better communication and more co-production with the people who are going to be using this. And, again, from reports and evidence from various projects, we know that for every £1 that is spent on properly setting up co-production projects, you save the public purse £7. So, it's worth doing and it's worth doing well.

And as our care needs are increasing, more people are going to have to engage with the system and more people are going to fall through the holes. I've fallen through the hole. I've got a lifelong genetic disability. Nobody checks up on me and nobody comes to see how I'm doing, and I'm very reluctant to engage with my GP because I know there's little that they can do, and also that they're very busy. So, I engage with my charity. And, again, I think that's somewhere that we could work smarter, because you could actually engage with the charities that deal with specific conditions and try and bring them together. And I think that would be very helpful, along with much better co-production and also much more communication, just as Jacqueline said, because you want to see everything working on the ground. And she's right, pockets are really good.

My final point: I'm very nervous about more contracts and more tendering out for contracts and things. Over the pandemic, the place that was dealing with direct payments had taken over a new contract, and, again, it had to be done differently; it was a short amount of time and it throws everything into confusion. And when you are making the person who is receiving the care the person who's the employer, I actually raised with the Welsh Government, what on earth—. I've got to now find personal protective equipment, I've got to learn how to give that to my PA and I've got to be able to train her, and where do I start? Because, basically, going back to the people that were administrating the contract, they said, 'Well, you're the employer. It's up to you to sort this out', which was crazy. So—

So, that kind of thing needs to stop.

Thank you, Chair. Just to head back to person-centred planning, how do we best improve communication between healthcare professionals in this regard, then, if there is a potential shortfall in PCP provision? How do we get the best healthcare—?

Okay, thanks, Gareth. We're really short on time, Sarah, so a really quick response, if you're able to. Thank you, Sarah.

Sorry, how do—. Sorry, it's just gone out of my head, so come back to me, but it's very short.

You take away the medical model of disability and you integrate the social model of disability across the board.

I'm going to move on to workforce and really ask—ADSS, you said in your paper that workforce pressures are hampering the ability to do all the things that we've discussed so far. So, what is the true impact of the workforce pressures in the care system?

10:00

Sori, gwnes i ddim clywed diwedd y cwestiwn yna. 

Sorry, I didn't hear the end of that question.

The question is, and we've had evidence accordingly: the workforce is a key issue in the delivery of the services that we have discussed. So, how much impact is the workforce having on the ability to deliver?

Diolch am y cwestiwn, a sori i ofyn ichi ailadrodd—nes i ddim cweit clywed y diwedd. Mae o'n her. Fel rydych chi'n gwybod, mae awdurdodau lleol wedi cael arian cyfalaf i weithredu yn y maes plant yn benodol yma yng Nghymru, ac rydyn ni yn adeiladu cartrefi i blant, llefydd i fynd am ysbaid gyda'r nos i blant ag anableddau a chyflyrau fel hyn. Rydyn ni'n medru adeiladu'r adeiladau yna, ond dydyn ni ddim yn medru eu staffio nhw'n hawdd iawn. Mae'r tâl yn weddol isel, ac mae'r job yn un heriol. Dydy o ddim yn swydd hawdd, felly rydyn ni angen cydnabod bod yr unigolion sy'n gweithio yn y math o sefydliadau yna yn bobl broffesiynol ac rydyn ni angen eu talu nhw i gydnabod y lefel o waith maen nhw'n ei wneud. 

Hefyd, rydyn ni'n gwybod nad oes yna ddigon o weithwyr cymdeithasol allan yn y maes—gweithwyr yn gweithio ym maes penodol iechyd meddwl, speech therapists ac occupational therapists. Mae yna ddiffyg o'r rhain ar draws, a dwi'n meddwl ein bod ni angen gweithio'n agosach, efallai, i godi sylw a statws y proffesiwn ar draws y meysydd penodol yna dwi newydd sôn amdanyn nhw er mwyn inni gael mwy o bobl i fynd i mewn i'r maes. 

Rydyn ni'n falch bod y bwrsari i weithiwyr cymdeithasol wedi ychwanegu gwerth. Rydyn ni'n gweld mwy o bobl yn dechrau dod trwodd rŵan sydd eisiau bod yn weithwyr cymdeithasol achos mae'n ei wneud o'n haws yn ariannol iddyn nhw wneud hynny. Rydyn ni'n dechrau gweld ffrwyth o hynny'n digwydd ar y funud, ond efallai ein bod ni angen gwneud hynna ar draws y bwrdd, fel petai, er mwyn gwneud yn siŵr bod y proffesiwn yn cael ei barchu a bod pobl yn gweld y proffesiwn yn le da i gychwyn eu gyrfa a symud i mewn i swyddi uwch ar lefelau uwch.

Thank you for the question, and sorry to ask you repeat it—I didn't quite hear the end of it. It is a challenge. As you know, local authorities have had capital funding to operate in the children's services area specifically here in Wales, and we are building homes for children, places for respite for children with disabilities and conditions such as these. We can build these buildings but we can't staff them very easily. The pay is relatively low, the job is challenging. It's not an easy job, so we need to recognise that the individuals who work in these sorts of organisations are professionals and we need to pay them accordingly to recognise the level of work that they do. 

We also know that there aren't enough social workers in this field, working in the specific field of mental health, for example, and speech therapists and occupational therapists and so on. There is a shortage of these across the sector, and I think we need to work more closely to draw attention to and raise the status of the profession across those areas we're talking about in order to attract more people into this area. 

We are pleased that the bursary for social workers has helped things. There are more people coming through now who want to be social workers because it makes it easier for them financially. We are starting to see that happening at the moment, but perhaps we need to do that across the board, so to speak, to ensure that the profession is respected and that people see the profession as a good place to start their career and move to senior levels and senior positions. 

Moving on from what you've just said, you mentioned children's services having a particular challenge. Are there any wider challenges within the workforce that you would like us to recommend to the Minister, because ultimately that's what we'll be doing with this report?

Diolch. Oes, mae sawl syniad, mae'n siŵr, gennym ni ynglŷn â—rydyn ni'n barod yng Nghymru yn gweithio ar y pledge Cymru gyfan, lle rydyn ni'n rheoli'r farchnad o weithwyr cymdeithasol asiantaeth yn y maes plant a theuluoedd, ac rydyn ni'n mynd i fod yn datblygu hynny i mewn i faes oedolion. A beth mae hwnna'n ei olygu ydy fod gweithwyr asiantaeth—maen nhw'n medru cychwyn mewn un awdurdod, ac os oes yna awdurdod arall yn talu tipyn bach yn fwy, coeliwch neu beidio, mae'r gweithwyr yna'n symud i'r meysydd yna. Maen nhw'n dilyn yr arian, fel dwi'n ei ddweud. Ac mae hwnna wedyn yn gadael yr awdurdod lleol mewn lle heriol, a'r plant a'r teuluoedd neu'r oedolion maen nhw'n eu cefnogi mewn lle anodd, am eu bod nhw'n mynd weithiau gydag wythnos o rybudd. Felly, mae hwnna'n rhywbeth rydyn ni angen ei gryfhau. 

Peth arall ydy efallai'r adnodd ychwanegol y buasai cynghorau'n medru ei gael ynglŷn â grow your own, fel sy'n cael ei sôn amdano—sut rydyn ni'n edrych ar y gweithlu. Ac fel roeddwn i'n sôn yn yr ateb diwethaf, eu cefnogi nhw i weld y maes yma fel gyrfa ac fel proffesiwn a rhywle hynod o bwysig sy'n cael ei barchu, ac felly ein bod ni'n medru symud i mewn i dyfu staff sy'n dod i mewn a'u cefnogi nhw i fynd i astudio i'r brifysgol neu i ychwanegu at eu hyfforddiant tra eu bod nhw efo ni. Felly, mae’r ddau faes yna yn hollol bwysig. 

Thank you. Yes, there are a few ideas that we have. We are already working in Wales on the all-Wales pledge, where we manage the market of agency social workers in the area of children and families, and we're going to be developing that into the adult sector. And what that means is that agency workers can start in one local authority, and if another authority is paying a little bit more, believe it or not they do move to those areas. They follow the money, as we say. And then that leaves the local authority in a challenging position, and the children and the families that they support are in a difficult position when perhaps they go with a week's notice. So, that is something that we need to strengthen. 

Another issue, perhaps, is the additional resource that councils could have in terms of growing your own, which is sometimes talked about, and that is where we look at the workforce and, as I mentioned in the previous answer, support them to see this area as a career and a profession and somewhere extremely important that is respected, and that we can move into a position where we grow staff and support them to go to study at university or to add to their training while they're with us. So, those two areas are extremely important. 

Just to add to that question, really. We've talked about social workers, but there is a lack of specialist roles in the community as well. So, I'm thinking about approved mental health practitioners, potentially occupational therapists, physios and those roles in the community to support social services and primary care in terms of that. But there have been long conversations, haven't there, around care staff and front-line care workers—so, domiciliary workers, individuals that work in care homes and supported living and specialist provision in the community, really. And some of that is around their terms and conditions and their pay rates in terms of that—so, same terms and conditions in some parts of the system—but also about appropriate remuneration for care staff to attract them into the business and to put it so that it's advertised as a career, really. And that you can get—. You know, you can move up the career ladder by starting in the care provision. So, it's more work in that space as well, I would say.

10:05

Briefly. BASW and SWU—the Social Workers Union—in 2020, launched the 'Social Worker Wellbeing and Working Conditions: Good Practice Toolkit', and we're currently, with BASW Cymru, in consultation with our members now around social worker well-being. But we found back then that people wanted more well-being support and time for reflective supervision to work through complex cases. They want manageable case loads, a consistent approach, they want decent pay and terms, they need more social workers and more administration staff, and they would like more flexible part-time working and remote-working opportunities, and more time for the therapeutic relationship-based practice, and also respect, recognition and an increase in public understanding of roles.

Diolch, Cadeirydd, a bore da, pawb.

Thank you, Chair, and good morning, all.

The committee has heard throughout this inquiry that there is not enough mental health support for those living with chronic conditions. Do you agree with that statement, and, if so, what should be done to improve it? Perhaps I'll go to maybe Sarah first, and then—.

You dropped out. Could you just repeat that, please?

Yes, of course. The committee has heard throughout this inquiry that there's not enough mental health support available for those living with chronic conditions. Do you agree with that statement, and, if so, what should be done to improve it?

Well, the social model of disability talks about not the person being disabled, but society disabling that person, and I think there's a lot of conflation between mental health issues and people making assumptions that, because you have a chronic condition, there must therefore be a mental health condition. I honestly think that, often, it's not—. With respect for things which are mental health conditions, because obviously, they're very, very important, but, with other conditions, I feel that society can lead you down a road where you end up with a mental health condition because you can't access the things you need to and you can't lead a full life. For example, punitive measures by the Department for Work and Pensions can often hinder people in their efforts to be able to work part-time or have variable working and non-contractual work.

Can I—? Just before I go to Jacqueline and Fôn, can I just ask, Sarah, then: do you think there's enough understanding in the professional setting about the link between mental health and chronic conditions and the impact that what you've just described can have?

Personally, I've been very lucky, because I've got an excellent GP and she knows that things don't come in isolation. So, if you can get somebody back on their feet as soon as possible, you can stave off other issues, for example. I think, with other professionals, I don't think it's understood that, by the time you reach crisis point, that you're going to invite a whole host of other problems that are going to need money, help and time.

And what about in the social care profession? Is there a need to improve that understanding, do you think?

Absolutely. I think every day is an opportunity for increasing that education. But I think around Wales especially—certainly with Cardiff University, with the University of South Wales and with Cardiff Met, which are universities that I do other work with outside of BASW—there is a real urge to engage well with people who have got lived experiences, and to engage, then, with the social work courses to make sure that the students are actually talking to people with lived experiences of a whole host of conditions where you may need to have a social worker involved. So, I think it's getting the education right in the first place and also ongoing career and professional development.

10:10

I can see witnesses want to come in. Just, perhaps, do you disagree with the comments from Sarah, or do you agree with them? And then, more widely, what could be done to improve support for those living with mental health problems and chronic conditions? Fôn, I think you wanted to come in.

Ie, diolch. Os gallwn i‘n canolbwyntio ar y maes plant yn benodol ar y funud, am fod, weithiau, rydyn ni'n anghofio am blant, ac mae'r term 'iechyd meddwl' wedi mynd yn eang, yn enwedig ar ôl profiadau COVID, heriau costau byw a ballu sydd gennym ni ar y funud, ac mae'n rhaid i ni beidio, mae'n siŵr, meddwl am y term 'iechyd meddwl' fel rhywbeth difrifol. Mae ein hathrawon, mae ein gweithwyr ieuenctid ni, mae ein gweithwyr canolfan hamdden ni yn delio ag iechyd meddwl, os liciwch chi, plant a phobl ifanc yn ddyddiol, ac mae hynny yn hollol bwysig. A beth rydym ni angen ei wneud ydy rhoi’r hyfforddiant iddyn nhw i fod yn wybodus o drawma—so, trauma informed, mewn ffordd. Sut ydyn ni'n cael pobl sydd yn dod ar draws plant a phobl ifanc o ddydd i ddydd i ddeall yr ymddygiad er mwyn peidio â'i weld o fel ymddygiad drwg neu ymddygiad heriol, ond bod yna reswm, gan amlaf, tu ôl i hynny? Felly, dwi'n meddwl bod yna le i ni, fel y proffesiwn, a sawl proffesiwn—fel roeddwn i'n ei ddweud, athrawon, gweithwyr ieuenctid, pwy bynnag, a hefyd yn y maes oedolion—fod yn fwy ymwybodol, efallai, am yr anghenion iechyd meddwl lefel isel sydd gan bobl. Am fod, os ydy'r ymyrraeth yna felly yn gweithio—. Ac mae gennym ni esiampl lle mae gweithwr ieuenctid wedi gweithio efo unigolyn sydd wedi colli rhiant, ac wedi medru gweithio’n llwyddiannus efo’r unigolyn yna i wneud yn siŵr ei fod o’n aros ar drac yn yr ysgol, ei fod o’n aros efo ei ffrindiau a'i fod o'n cael y gefnogaeth mewn ffordd saff, ac yn cael hynny, efallai, yn yr ysgol a ddim yn gorfod mynd i weld therapydd neu fynd i adnodd sydd yn ddrud, sef child and adolescent mental health services, er enghraifft. Felly, mae yna ffyrdd, dwi'n meddwl, lle medrwn ni weithio tipyn bach yn wahanol i wella dealltwriaeth bobl o anghenion iechyd meddwl, dim ots beth ydy oed yr unigolyn.

Yes, thank you. If I could concentrate on children's services at the moment, because sometimes we forget about children, and the term 'mental health' has become quite broad, especially after COVID and the cost-of-living crisis challenges that we have at the moment, and we shouldn't think of the term as something serious, I'm sure. Our teachers, our youth workers, our leisure centre workers are dealing with the mental health, if you like, of children and young people on a daily basis, and that's extremely important. And what we need to do is provide them with the training so that they become knowledgeable in terms of trauma—so, trauma-informed, in a way. How can we have people who come across children and young people on a daily basis be aware and understand the behaviour, so they don't see it as bad behaviour or challenging behaviour, but that there is a reason, quite often, behind that? So, I think there's a place for us, as a profession, and many professions—as I said, teachers and youth workers, and also in adult services—to be more aware of those low-level mental health needs. Because, if that intervention then works—. And we have an example where a youth worker has worked with an individual who has lost a parent, and has been able to work successfully with that individual to ensure they stay on track in school, and that that individual stays with his or her friends, and has the support in a safe manner, and has that, perhaps, in school and doesn't have to go and see therapist or an expensive resource, such as child and adolescent mental health services. So, there are ways, I think, that we can work in a slightly different way to improve people's understanding of mental health needs; it doesn't matter what the age of that individual might be.

Diolch yn fawr for that answer. Forgive me, Chair, I can't quite remember who said it earlier, but he talked about flexible services. Fôn, what you described there is an approach of trauma-informed. Would it be a fair assessment to say the services should be flexible and there should be a trauma-informed approach to—? I can see nodding. So, I won't press you on that. I can see from Jacqueline as well. Jacqueline, what about adult services? Sorry.

Just to add, and not to repeat any of the comments, really, I think that there is a wider awareness across all professionals that work with individuals in our community, and there are—. We still have silo medical models and criteria and access into services such as mental health, learning disabilities and other parts of the system. What we say, really, is it depends where you are in the system whether you get the right multidisciplinary team around you. So, I think us being able to flex and pull on specialists if we need it, or pull on low-level mental health support for an individual—. And it could be for a period of time; it could be a very short fluctuation in a person's needs. I think our care workers on the ground, our social workers, our district nurses, our GPs—they are providing emotional support and supporting people with their mental health. What we need to be able to do is make it easy for people to access specialists if they need it, and it is about awareness raising amongst all of our professionals and giving them tools to recognise triggers with individuals as well, and for individuals to recognise that as well and be part of their person-centred planning so that there are contingency plans in place for individuals.

Are the services there? If they were recognised, and the training was there, and you could have that flexible approach, are the services there? Or is the problem that you don't have the flexible approach to be able to direct people to services?

I think the services are there. Whether they're there in the size that we need them to be to meet the need, I couldn't—. I'm not sure I can answer that today. There are services there when people do need it. It's just—. What we need is seamless access, really, I would suggest.

Okay, thank you. And the final question, Chair, if I do have time. Just a point around social isolation. Obviously, for those who do suffer with chronic conditions, social isolation can be an issue. For those who suffer with mental health illness, social isolation can an issue. And combine them, and, obviously, it could be worse. Is there enough focus on social isolation for those experiencing those types of problems? I can see Sarah, perhaps, shaking her head, saying there's not. Perhaps you want to comment on that, and what the focus should be like?

10:15

Well, I'm thinking, and I think, post pandemic, or post lockdown, it's got a lot worse because, again, people are very nervous, especially people with multiple health conditions—they're very nervous about mixing too much and the things that they could have done previously aren't open to them, and there's very little being done to integrate people. Everyone seems to be, 'Well, we want to go back face to face now', or, 'We want everything to go back to normal.' Well, we all would love that, but it's not always possible. So, I think it's very difficult for people who want to lead a full life to be able to integrate back into society at the moment. I keep looking around, and there's very little that somebody like me can actually engage with.

Well, society has a duty to make sure people are not left isolated and alone, so there's certainly something we need to look at there, Chair. I'll leave it there, Chair. I know we're pressed for time.

I want to ask questions about support for unpaid carers and families. We've had lots of evidence that tells us that it could be far better. Family members are mostly carers; some of the carers themselves are quite elderly as well, in an ageing population. So, what sort of support do you think should be offered against what sort of support is offered?

Jackie, you're looking like you might want to say something. Jackie—Jacqueline, sorry.

I think unpaid carers—. In our submission, we wrote some narrative around that. We recognised—. And, actually, we've got a legislative responsibility around unpaid carers. What we need is for carers to have the right information, at the right time, by the right professional. So, as I said, right from the onset, when people have caring support needs or they have a diagnosis, they need the right information at the right time, and that might be available for some parts of the system, but might not be available for all, really. Carers organisations have got a wealth of information about how they would want the system to be improved, and we should draw on their expertise, really. 

On the ground, I think our social workers, when they're working with the individuals, supporting cared-for individuals, actually, their role is very much supporting the carers. I look at cases on a weekly basis, really, and my question always is: does that individual need a carer's assessment? What we find is that most people don't recognise themselves as carers, and it's making sure that we do that at the right point for that individual. So, what people say to us is, 'As long as you sort out my father, my mother, my husband, then I'm okay', but it's imperative, really, that we go back to that situation and see if there's an additionality for those carers at that time, really. But it needs to be the whole part, the whole of the system as well.

Yes. I want to ask particularly about respite, because, if the carer doesn't have a break and then becomes ill themselves, you've then got two people who require much more intensive care and support, and we all know that budgets are squeezed and we also know that those facilities that people would have accessed, whether it was a luncheon club or any such facility that would have stopped what has just been asked about, the social isolation for the cared-for and the carer—. How are those things, in your opinion, affecting both sides—both people, if you like—the carer and the cared-for?

We've only got time for one person to address this. Jacqueline, do you want to come back in on this one?

Yes, if that's okay. So, respite is a fundamental part of contingency planning for an individual, for the cared for, and the carer, really, and we continue to do that on a daily basis across Wales. As we move into the next financial year and the years that are coming, some of the facilities that you talked about, like luncheon clubs, support for the third sector, they are the things that local authorities are looking at and potentially putting up as savings, in order to meet their base budgets, really. So, I think it's going to get harder as we go forward, and it's going to get more difficult for us to do some of that lower level support for carers, as we go forward, really. Contingency planning is the answer, and making sure that we've got those in place for individuals, and it's about the prioritisation of resources, really, in the whole system.

10:20

Thank you. Do others want to come in? No. I'll come on to—sorry, Fôn Roberts.

Ie, diolch, ac efallai jest i roi tipyn bach o sylw i ofalwyr ifanc. Mae'n rhaid inni gofio bod gennym ni nifer uchel o ofalwyr ifanc yn gofalu am eu rhieni neu eu brodyr a'u chwiorydd adref, ac rydym ni yn gweithio efo nhw i ddeall yn union beth ydy eu hanghenion nhw. Er enghraifft, rydym ni yn ymwybodol bod yna sawl awdurdod erbyn hyn wedi datblygu ap i'n gofalwyr ifanc, lle maen nhw'n medru cyfathrebu. Os ydy mam ddim wedi bod yn dda neithiwr ac maen nhw'n mynd i fod yn rhedeg yn hwyr i'r ysgol, yn lle eu bod nhw'n cael ffrae neu row am pam maen nhw'n hwyr i'r ysgol, eu bod nhw'n medru gyrru neges i'r ysgol, yn cyfathrebu hynna. Felly, rydym ni angen defnyddio technoleg, efallai, i hybu hynny. Yr her sydd gennym ni efo'n gofalwyr ifanc ydy bod yr arian gan y Llywodraeth wedi stopio, oedd yn galluogi awdurdodau lleol i gefnogi'n gofalwyr ifanc. Felly, mae hwnnw wedi gorfod cael ei 'absorb-io', os liciwch chi, gan yr awdurdodau lleol erbyn hyn, ac mae o'n her, fel dywedodd Jacqueline, pan rydym ni'n edrych ar doriadau, ar orfod gwneud toriadau. Mae cyfarch gofyn gofalwyr ifanc yn statudol, ond dydy'r arian ddim gennym ni i ddatblygu pethau fel aps a ballu i fedru cefnogi pobl ifanc weithiau.

Thank you, and perhaps just to address the issue of young carers. We have to bear in mind that we have a high number of young carers caring for parents or siblings at home, and we do work with them to understand exactly what their needs are. For example, we are aware that there are a number of authorities that have developed an app for young carers, where they can communicate. If their mother's been unwell and they're going to be running late to school, rather than being told off for arriving late, they can send the school a message and communicate that to them. So, we need to use technology, perhaps, to encourage that. The challenge we have with our young carers is that the money from Government has ceased, that enabled local authorities to support young carers. So, that's had to be absorbed by the local authorities now, and it is a challenge, as Jacqueline said, when we're looking at cuts, at having to make cuts. Meeting the needs of young carers is statutory, but we don't have the funding to develop things, such as these apps, to support those young people somtimes.

Diolch yn fawr iawn, Gadeirydd. Mi fyddai'n gofyn trwy gyfrwng y Gymraeg. O ran gofal ataliol, mae cynlluniau ar gyfer iechyd a gofal cymdeithasol yng Nghymru yn dweud bod angen inni symud tuag at system sy'n blaenoriaethu gofal ataliol, gan annog dewisiadau iach o ran ffordd o fyw. Felly, yn eich barn chi, pa bynnag un ohonoch chi sydd eisiau dod i mewn gyntaf, pa rôl ydych chi'n meddwl gall gofal cymdeithasol ei chwarae yn y symudiad tuag at ofal ataliol? Ydy o'n ddigon i fynd i'r afael â galw cynyddol am wasanaethau, felly, os ydych chi'n gwneud hynny? Fôn.

Thank you, Chair. I will ask my questions through the medium of Welsh. In terms of prevention plans for health and social care in Wales say a shift is needed towards a system that prioritises prevention and encourages healthy lifestyle choices. So, in your view, whichever one of you wants to come in first, what role do you think social care can play in this shift towards prevention? Is this enough to address the rising demand for services, therefore, if you do that? Fôn.

Ie, yn bendant, dwi'n meddwl mai ymyrraeth gynnar ydy'r ateb yn fan hyn. Os medrwn ni stopio Mrs Jones rhag syrthio a gorfod mynd i'r ysbyty a wedyn disgwyl cyfnod sylweddol cyn medru dod adref, mae hwnna'n rhywbeth y mae angen i ni ganolbwyntio arno fo, ac yn union yr un peth ym maes plant. Mae'n rhaid inni gofio bod hwnna'n lot mwy eang, fel sydd wedi cael ei ddweud gan Sarah a Jacqueline. Mae'r trydydd sector yn wych yn medru gwneud cynnig o weithgareddau i nadu pobl. Dwi'n ymwybodol, yn Ynys Môn, fod yna grŵp ffitrwydd Nifty60s, ac mae yna enghreifftiau yn fanna lle mae yna unigolion wedi bod ar y rhestr aros i gael triniaeth, wedi bod yn mynd i gael ymarfer corff mewn lle diogel, saff, lle does yna ddim stigma, a dydyn nhw ddim, erbyn hyn, angen y driniaeth yna. Felly, mae'n bwysig ein bod ni'n cael yr adnoddau, mae'n siŵr, i fynd allan i'r trydydd sector i weld beth fedran nhw ei gefnogi efo'r ymyrraeth gynnar a'r gwaith ataliol, oherwydd dwi'n meddwl mai hwnna sydd yn mynd i fod yn greiddiol i'n gwaith ni. Ond, nadu pobl rhag dod i mewn i'r system sydd angen inni ei wneud o hyd, yn fy marn i.

Well, certainly, I think early intervention is the solution here. If we can stop Mrs Jones from falling and having to go to hospital and then having to wait a long time before being able to return home, that's something we need to focus on, and exactly the same is true in the area of children's services. We need to bear in mind that that's much broader, as has been mentioned by Sarah and Jacqueline. The third sector is excellent in being able to provide prevention activities for people. I'm aware that, in Ynys Môn, there's a fitness group called Nifty60s, and there are examples there where individuals have been on waiting lists for treatment, have been undertaking exercise in a safe place where there is no stigma, and they no longer need that treatment. So, it is important that we get the resources to get out to the third sector to see what they can do to support us with this early intervention and this preventative work, and I think that that is going to be at the core of our work. But, we need to prevent people from coming into the system in the first place, in my view.

There are a couple of areas to add to in terms of that. Yes, there needs to be a shift, but it's not just into social care, it's into our wider partners as well, and wider local government in order to meet people's population needs, as I said earlier, really. There are three elements for me in terms of that: there are those where we've got the wider generic systems in place, so whether that's through the third sector, through the exercise class that we've just heard about, or for social isolation, where people are going to those themselves and there's self-help, and there's community resilience in terms of that. And then there are those areas where people are on the cusp of potentially coming into service, or potentially their conditions are destabilising, really, such as falls prevention, and those types of things. And that's where we could invest more money, in terms of stopping people getting to that. And then there's the ongoing support and almost maintenance and support for individuals that are living with long-term conditions, that prevents them from escalating into a crisis, or escalating into needing some sort of intervention—so, ongoing therapy support at home, and those types of things. So, there are different elements, I suppose, in terms of prevention and well-being, and I would say that we need to invest in all of those areas. So, some of it is the wider society stuff, some of it is around people on the cusp of coming into care, and preventing people deteriorating and needing intervention.

10:25

Just to add to that, I think also, if you speak to people who have got long-term chronic conditions, especially those where maybe their mental illness is predominantly a barrier to them integrating, they find—. These schemes are all well and good, but, unfortunately, there's a real fear of engaging with them, around scrutiny from the Department for Work and Pensions. And I know with the co-production work that I do that we've lost members because they've been called for compliance meetings, and things like that, and that's sent their mental health spiralling, and then they've ended up back in hospital. And they feel that it's too great a risk for them to do any voluntary work or to engage with these groups in case the DWP starts looking through their Facebook page and sees evidence of them being happy, for example. So, that fear is a real thing with the people that I engage with.

Diolch yn fawr iawn. Os caf i un cwestiwn olaf, Gadeirydd, ac os y cawn ni ymatebion cryno. Gan adeiladu ychydig ar yr hyn sydd newydd gael ei ddweud rŵan, rydyn ni'n gwybod bod cynorthwyo'r cleifion sydd efo cyflyrau cronig i reoli eu hiechyd a'u gofal eu hunain yn gallu gwella canlyniadau clinigol. Pa mor hyderus ydych chi fod y gwasanaethau gofal cymdeithasol yn cynorthwyo pobl i hunan reoli eu cyflyrau? Ac ar ben hynny, ydy'r ffactorau cymdeithasol hynny, yn emosiynol, a ffordd o fyw sy'n effeithio ar iechyd, hefyd yn cael digon o sylw? Oes rhywun eisiau dod i mewn ar hwnna? 

Thank you very much. If I could have one final question, Chair, and if we could have brief answers. Building perhaps on what's just been said now, we know that supporting people who are living with chronic conditions to manage their own health and care can improve clinical outcomes. How confident are you that social care services are supporting people to self-manage their conditions? And on top of that, are those social factors, emotional and lifestyle factors that affect health, also sufficiently addressed? Does somebody want to come in on that?

Okay. So, I would say that social care are well placed to support individuals, as we've said throughout the morning, really. But it's not just about social care, is it? I think it's access to all parts of the system, really, that that individual needs in terms of that. So, integration is the key to support people to maintain that. So, as I said, it could be integration with mental health services, with different parts of the health board; it could be with our leisure services. So, it's all parts of that, really. But we do work at an individual level, and that's our responsibility, to support people through that system, and to support them with access and provide advocacy as well, if that's needed.

Thank you. Thank you, Mabon. We're just coming to the end of our session now—we've just got a couple of minutes left. So, I suppose, from my perspective, what would be really helpful is just to capture a summary of today's session. From your perspective, keeping in mind, in terms of our recommendations, as we think about making recommendations to the Government in terms of supporting people with chronic conditions, what would be your key asks, in bullet point form, in one sentence, capturing your views in perhaps a couple of sentences? What would be the key messages from you in terms of what recommendations we should and could make to the Government? Jacqueline.

Shall I go first? Okay. For me, it would be about integration and the ability to flex the system to meet an individual's needs, and to move away from silo working and the medical model to the social model of disability. That would be—. If I had to sum it up in one thing: make it easy for our staff and our individuals on the ground to be able to do that.

There we are. And just for the record, I can see Sarah and Fôn nodding in agreement with what you said. Fôn.

Y ddau beth ychwanegol efallai y buaswn i'n eu dweud ydy peidio colli ffocws ar y gwaith ataliol pan rydyn ni mewn sefyllfa lle rydyn ni'n edrych ar doriadau cyllidol. Mae cadw ffocws ar hwnnw yn mynd i fod yn bwysig iawn. A wedyn, fel roeddwn i'n dweud, yr hyblygrwydd a hefyd yr hyfforddiant i fod yn ymwybodol o drawma ynglŷn â phrofiadau pobl, a bod hwnna ar draws bob asiantaeth sy'n gweithio efo unigolion yng Nghymru.

The two additional points that I might make are that we shouldn't lose focus on the preventative work when we are in a position where we're looking at budget cuts. Keeping focus on that will be hugely important. And then, as I said, that flexibility and the training for being trauma aware in terms of people's experiences, and that should run across all agencies working with individuals in Wales.

10:30

Back to co-production, and I would say also look at discrimination around age and gender when engaging with healthcare, and value judgments—stop the value judgments. 

Okay. Thank you all so much for that, and you hit the points and were succinct as well, so thank you so much. Can I thank you all so much for being with us today, and apologies that I had to curtail some bits as well? It wasn't because I wanted to, it was just to get through for time, because we've got two other panels as well later on today. So, diolch yn fawr iawn. Thank you very much. 

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

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

10:40
3. Cefnogi pobl sydd â chyflyrau cronig: sesiwn dystiolaeth gyda Chymdeithas Geriatreg Prydain, Diabetes UK Cymru a Choleg Brenhinol Pediatreg ac Iechyd Plant Cymru
3. Supporting people with chronic conditions: evidence session with The British Geriatrics Society, Diabetes UK Cymru and The Royal College of Paediatrics and Child Health

Welcome back to the Health and Social Care Committee. I move to item 3, and this is our fifth evidence session to inform our chronic conditions inquiry. We have three witnesses with us today, so if I could ask the witnesses just to introduce themselves. I'll come to our virtual witness first. 

Hi, I'm Dr Nick Wilkinson. I am a paediatrician and officer for the Royal College of Paediatrics and Child Health. 

Hello, I'm Nicky Leopold, and I'm a geriatrician working in Swansea and representing the British Geriatrics Society, Welsh branch.

10:45

Hello, I'm Mathew Norman. I'm the deputy director for Diabetes UK Cymru.

Thank you all for being with us today. So, diabetes, geriatrics and paediatrics are all areas of healthcare that have been identified as having the treatment of multiple conditions at their heart. Can you share any examples of good practice in each of your specific areas that would help us in the context of the rest of the discussion today? Anybody else who would particularly like to jump in on that one first? 

So, I think we were asked a few things, particularly around person-centred care, and that’s something that I think we’ve been really pushing forward the agenda of, really, when it comes to care for older adults. Because older adults will have multiple conditions, quite often. They’ll be living very well, sometimes, with multiple conditions, and sometimes living less well, and more affected by them. And actually the person-centredness of it is a key driver, really, for the British Geriatrics Society in terms of how we get older people to live better in their older age. And so individualising care plans for people is really, really essential, because—. I suppose the analogy would be you or I, hopefully, if we’re not living with chronic conditions, may have a one-off insult. So, for example, you might get pneumonia, you might get a urinary tract infection. But that would be one thing, and you may need to see your GP, you may need to present to hospital. But, for people living with chronic conditions such as older age, they don’t present in the same way, so a very minor insult might mean that they actually destabilise a huge amount, and then often they reach what one of my colleagues calls a crisis—so, a crisis in terms of something they’ve been living very well with, and managing very well, that can destabilise to the extent that they need hospitalisation or end up falling on the floor.

And some of the better examples of how we as a society, and how some of the services that people, some of my colleagues, have developed have particularly been around that community interface—so, things like the development of what used to be called intermediate care, but now looks at things like hospital at home, virtual ward-type settings. Those have been done in different pockets in Wales, and adopted in different ways. And a particular model—. I know the Swansea model, and in particular—. The first place that began, but then it spread across to Swansea, was really in the Neath area, with a very, very good, responsive acute clinical team, to the extent that, often, patients living in that area with chronic conditions will not really think of hospital as necessarily being the go-to place for them, accepting that, if they’re able to get very similar care in their own home that is timely and reactive, they will often do better.

So, there are some very good examples. I think Cardiff are redeveloping some of their services around that, and obviously more rural areas—I know that you’ve come over from Aberystwyth—and I know in Hywel Dda in particular, where you’ve got this huge array where hospitals are very, very distant from people’s own homes, the policy really needs to actually effect that for those people who are living an hour, two hours, from the nearest hospital. We really need to be thinking about very reactive but equivalent services that are safe, and that’s the important thing. We mustn’t deny older adults hospital. We actually must give services that are equivalent and equivalently safe, and that’s one of the big challenges, really, which is why it’s not cheaper. In fact, it’s probably at best cost-neutral, and possibly even more expensive, to deliver care in people’s own homes. But, actually, in terms of person-centredness and the reactivity of it, it tends to be better for older adults.

Yes. I would echo that completely. I think the person-centredness is exactly what we're thinking about in diabetes care. When living with diabetes—. Especially when it comes to type 1 diabetes, mental health is the biggest element when it comes to living with diabetes. You're looking at an extra 180 decisions you have to make per day when living with the condition. And when it comes to looking at person-centred care, especially when transferring from, say, paediatric care to adult care, the biggest sense is the lack of available services that are specifically there for adult care for people living with diabetes. And so, when it comes to, say, mental health and accessing mental health services, we see that as the biggest gap that we see, where services are needed the most. We've obviously raised several times in this committee, and through different evidence sessions and the cross-party group on diabetes, the report by Dr Rose Stewart, who has been leading in terms of showcasing what can be done to improve the level of access to psychological support for people living with diabetes. So, I'd highlight that to the committee as an example of what could be done here in Wales to help people living with diabetes.

Furthermore, there's been work done, for example, on disordered eating, type 1 disordered eating. Rachael Humphreys is a lead paediatric nurse, leading on that sort of work, and her work has been looking at, say, that, when people get diagnosed and when people are living with diabetes, they are focusing on their diet quite a lot to ensure they're eating the right carbs, they are not going into hypoglycaemic attack, that they won't go into diabetic ketoacidosis. And so, what we're looking at there is that people obviously have that anxiety around eating, and so, again, you're looking at the condition of living with diabetes, plus, then, you have that element of fear about how to eat and what to eat. So, it has been noted in the past, but Rachael Humphreys' work, which has been awarded, has been pioneering, because, now, in a sense, it's been identified and diagnosed and people are supported. I think, for young people, you're looking at around the 70 to 80 percentile being diagnosed with some sort of eating disorder when it comes to their diabetes. So, those links are there.

And, of course, when you look at more, say, type 2 diabetes, which makes up about 90 per cent of cases in Wales, there are ordinarily other co-morbidities that come with it, especially, say, if it's a diagnosis from being overweight or living with obesity—so, cardiovascular conditions, kidney conditions, retinopathy, eye conditions—and are these are all sort of curtailed and looked after, or supposed to be, by the eight care core processes in Wales. They're, obviously, awarded by the National Institute for Health and Care Excellence. So, they're the core processes that everyone should be getting, the level of care. And, unfortunately, in Wales, we're looking at about 40 per cent of those tests are done, across both conditions, for type 1 and type 2 diabetes.

And, of course, the access to that data for us to be able to assess and see where the best practices are, unfortunately, isn't best available here in Wales. In England, the national diabetes audit data, which helps us identify who's doing the best care core practices, is available at a GP-cluster level, and the data's available quarterly. In Wales, it's yearly, and, actually, the recent NDA data results are missing two health boards, so we can't actually use that data appropriately in Wales. So, it doesn't give us a full picture either of how people are receiving their care.

And I think, again, ruralness—. So, obviously, Wales has, unfortunately, that disadvantage, where those living in more rural communities face fewer services, and, obviously, travel to services and the level of access to care. We find people who may come to Wales to live, say, later on in life, who find out that the level of care isn't there, and, say, when they transfer their files from England into Wales, there's missing information. We've been doing some recent research and we've found that people find that they were diagnosed with type 1 diabetes, but then they come to their GP and it's actually type 2 on their records. 

10:50

Yes. Thank you, Mathew. Dr Wilkinson, if I can come to you, but also perhaps widen out the question as well to where you do see the challenges of person-centred care, and what you think the solutions are to overcoming those challenges. 

Thank you. So, I would echo the previous speakers very much for children's care, co-ordination of person-centredness, and also the issues around transition, which we can come back to. Many long-term conditions and complexities begin in childhood, and then, obviously, affect the whole of life, and we know that if we get it right in early childhood and in adolescence then that, then, rolls through to the benefit later in life. If we just take asthma as a long-term condition in children, UK wide—and it applies to Wales as well—there are 1.1 million kids with asthma, but we know that we have the poorest mortality rates for asthma, and so the co-ordination of care for this is somewhat complex. And some of that speaks to the relationship between primary and secondary care.

One of the difficulties we have in paediatrics is that a lot of primary care specialists are not trained in paediatrics, but do pick up the role as their career develops, and so we need better primary care and secondary care interface working for long-term conditions. And there's a great example of that in Cardiff as well as around Wales, and what that's shown is that, by having greater communication between secondary care and primary care, or even between tertiary care for specialist conditions and primary care, you reduce the number of hospital attendances, you can get earlier intervention, you can get better access to community resources, whether that's therapists or nurses, and so that's joined up. 

What we've also found is that we need greater communication with schools and social services, and this is absolutely essential, especially because we know that the well-being of children is enhanced through engagement in school and because we now have almost a crisis with school attendance, persistent absence being prevalent in around about 18 per cent of children now, and one of those principal reasons is medical authorisation. So, 50 per cent of those who are absent are medically authorised. There are technical issues around the definition. But, if we want children to learn to live with their long-term conditions and feel empowered, we need to have the engagement of schools with that, and that is being shown to be impactful.

If we just take another example, in terms of wait lists, we know that children were disproportionately affected for their access to interventions, but again we've got a good example of how that is improving, say, in Aneurin Bevan health board at the Grange and their use of online support data or information for patients and their support then of primary care. One of the difficulties we have is because, in paediatrics, the access to specialist services tends to be centralised, and so for the population it's often Cardiff but could be Swansea, remote areas tend to have poorer access. Then, when there is repatriation back to the local services—and we know through prudent healthcare and 'A Healthier Wales' that we want the access to care to be local to the patient—we then have challenges there through lack of access to health visitors, to physiotherapists, occupational therapists and psychologists, and there's huge variation in this across all of the health boards. I'm just trying to give you a sense of where we're at at the moment and how care could be better co-ordinated.

10:55

Thank you, that's a really helpful summary from all of you. There are quite a few questions that stem from that, but I'm going to hold back because Members have got specific questions but I think they'll want to dig into some of what you've said as well in their questions. We're a bit conscious of the time today, so some of the questions are only to perhaps one of you, so it might not need all three of you to answer all the questions that we have. Sarah Murphy.

Thank you very much, Chair. Thank you all for being here this morning. We've heard throughout this inquiry the need for mental health support for people with chronic conditions. So, as the Chair mentioned, I've got questions here that are specifically for some of you. My first question is: the committee has heard there is not enough mental health support available for people living with chronic conditions, so how do your respective specialities ensure that patients receive adequate mental health support and what measures could be implemented to enhance that mental health support for this demographic? If I could come to you first, Dr Wilkinson, that would be great.

Sure. So, we know that 50 per cent of long-term mental health conditions begin before the age of 14, 75 per cent before the age of 24 years of age. So, it's a huge issue. We know that those with long-term conditions have twice the chance of developing a long-term mental health condition and we know that access to mental health support between physical health and mental health is extremely poor. There aren't enough services just to manage serious mental health conditions that meet the threshold of CAMHS and so there is no leeway then for this. I think in Lynne Neagle's document—I think it was 'Mind over matter', published in 2018—it really identifies this population that's called the missing middle. We really haven't addressed that yet, so there are lots of young people who then have physical symptoms, such as pain, fatigue, nausea and dizziness, who are getting no services at all and then are absent from school. And so we really need to acknowledge that.

Some patients do have some great access. In my service in paediatric rheumatology, we have psychologists embedded in that, and then we have some liaison, but that's not in all services. I'm working extensively with patients with long-term bladder conditions on how they can access the right mental health support. Many patients who've had surgery who then had poor outcomes then have a lot of difficulties and they aren't able to access care. Then, care becomes centralised and those who then have poverty—. We know that the risk of a mental health condition for a child in poverty is four times that of the normal population, and then we're further disadvantaging them because they have an increased chance of long-term conditions. They go back to their local community and they have no access to care. It's especially prevalent in areas in the Valleys, in Hywel Dda and in north Wales. I hope that that gives you something of a perspective.

11:00

It does. That's really insightful, thank you. Just one more question, then: do you think that the Welsh Government's draft mental health and well-being strategy sufficiently addresses the needs of children and young people and everything that you've just touched on? 

There was a reason for the strategy to move away from just talking about children, as before, to a broader view. I think, in some ways, that's good, but it wasn't specifically focused on children and families who have many different issues, and because of its prevalence in children and its long-term effects. We would have preferred, from the college, that there was specific mention of children and families. We know that it's out for consultation at the moment, so I don't want to say too much, because we're just formulating our opinion about this. But if I were to say one thing, it's that, in the well-being strategy, there's a huge emphasis on social prescribing and access through charities, and that's just not available for children and families. We're trying to think of new ways of doing that. There are the community schools that are trying to bring in the support for families, and I think there's a great opportunity for tying health, in a better way, into some of the social prescribing through schools that would then support families in that.

That's excellent. Thank you very much. Nicky, if I can come to you next, the British Geriatrics Society's written evidence describes mental health services for older people in Wales as being currently in crisis. Can you expand on this issue and what you think needs to be done to help mental health services for older people, to be able to support them in the way that they need?

I think, predominantly, if we had to look at the biggest bulk of mental health in older adults, it tends to be dementia. Obviously, there's depression and anxiety and all the other things, but actually, in terms of the scale of it and the impact—. And interestingly, what my colleague was just saying about the impact on the family and actually the mental health of the family as well, because you can only look after and support a person living with dementia well if you, yourself, feel supported, and your own mental health is actually robust and stable.

The problem is, I think, it is such a widespread issue. Dementia is such a spectrum of illness from the beginning to the end stage, but predominantly, the majority of people living with dementia are living with Alzheimer's. And again, the services are quite fragmented, and nowhere that I'm aware of in Wales is there enough of it. There are pockets of excellent, excellent work going on, but actually, it does tend to be pockets of work. I think that there's only one health board that's got a psychologist that's associated with their memory services, for example, and psychology is really, really essential here, isn't it, not just for the individual, but actually for the people supporting that individual. I think that that's the kind of thing that could be bumped up.

I think that, also, it is about the knowledge and understanding amongst the public of what dementia can be and what living with dementia can be like. I was listening this week to a carer who was talking to me about their own isolation, because they felt embarrassed when they took their relative out, and I think that that's something that, when we're talking about social prescribing—. The big public health issue here is not just about what we can do in policy but what we can do in societal attitudes and societal changes. These things are very, very difficult, aren't they—they're really, really difficult. How do we change mindsets? But the reality is that if we live long enough, we will get dementia, but for some people, they're fortunate that it's in their hundreds, and for some people, it's in their sixties. We're not quite sure, are we? We don't know what will happen to us.

It is actually a Welsh thing. As a person born and brought up here, I think that it's something we could own and make something we could be proud of. I'm talking about where that begins, in childhood. We know that, for children who experience caring and watching, that can be a big burden on them, but you can also see the secondary gain to them in terms of their lifelong attitudes to people living with disabilities and living with caring needs. So, there could be balances in policy, I think, between how we do it.

In Cardiff, in dementia support, they have got some dementia support workers, who are band 4, in NHS banding, and they're a good key link, I think, for patients and their families living with dementia, because, obviously, access to final tertiary services can be very, very fragmented, but they do have that touch point of access. In Swansea, we've got something called the dementia hub, which is a place within a shopping centre where people can go to get information. I think that's been so successful that they're starting to now try and roll that out into the GP clusters. So, I think that there are almost like small-scale things that work really well and have really good feedback that we could look to develop more. Certainly, I think things like the link workers and the dementia hub are things that we could look at doing in Wales.

11:05

Thank you so much, Nicky. Mental Health Matters have a dementia hub opposite my office in Bridgend, as well, and that's been hugely beneficial to the whole community. Chair, I had just one more question that I wanted to put to Mathew, if that's okay.

It is okay, but as long as it's a fairly short answer. Sorry to have to say that. Thank you, Sarah.

Of course. I just wanted to say, as well, thank you, Mathew, earlier on for talking about the eating disorders that people with diabetes are particularly susceptible to. During Eating Disorder Awareness Week, we learned a lot about type 1 diabetes and eating disorders and also avoidant/restrictive food intake disorder, so thank you for touching on those. But I just wanted to ask you—. The quality statement for diabetes published in June 2023 says that health boards should provide tools and appropriate support for people with diabetes to help address the emotional and psychological impact of living with diabetes. What impact has the inclusion of psychological support in the quality statement had, do you think?

I think the biggest gap we see in diabetes care is in adult services. There isn't a dedicated adult service available for people living with diabetes. The problem is it fits between physical health and mental health, and, of course, because it's related to diabetes, it doesn't sit nicely within the current streams of work. What you find is there isn't that kind of support at all. There is plenty of research out there that shows that the biggest increase in diabetic ketoacidosis happens between the ages of 17 and 25, and that's because a lot of change is happening in those years. You're going from paediatric care to adult care, but also you're going through a massive change. You're maybe going to university, you're leaving home for the first time. You're changing so much, but there is no support there for you in going through these changes. Then, the management of their condition starts to fall and deteriorate because they haven't got access to these services. I know Cardiff and Vale University Health Board have put a business case forward. We're going to be hearing about that, hopefully, soon at the cross-party group on diabetes. When we do, I'm more than happy to recommend to the chair to write a letter to you guys and let you how that's going forward. That business case, then, if it goes forward, hopefully, will have a pan-Wales approach. So, I think work is being done in the background, but we're not there yet.

I just wanted to echo two things that were said by Nicky and Mathew. Just in terms of what Nicky said, I think there is a huge health literacy campaign here to support our populations in understanding health better, what supported self-management is, and how to support for dementia and mental health issues. And I think that begins actually in healthcare, because I think in healthcare, we separate out mental health and physical health, and I think we all need to have responsibilities and need the tools and support and training for that across the whole of the health service to make those connections. I think that's absolutely essential, because we can't just have more psychologists; it needs to be the way that we're talking about it, the language we're using, and that understanding.

The second thing is that the biggest population who are suffering in all of this who haven't seen the improvements in morbidity and mortality are those aged 17 to 25. That was really well characterised there by Mathew. The policy structure we have is not really talking to that population. It is identifying a difficulty around 16 to 18, but not thinking about how strategically in communities we can address the needs of 17 to 25-year-olds. I think we just need to have an age-appropriate approach to this, rather than segmenting the population purely by age, that understands their needs and the neurodevelopmental needs. The change in the brain shortly after puberty until 25 is huge, and it's almost equivalent to that of a one and two-year-old, and that's because young people have to become independent and we need to support them through that.

11:10

Can I go back to Dr Leopold? In your earlier response to Sarah, you talked about some good practice that happens in Swansea, I think it was. Is there a vehicle to share that good practice?

We do within our society and within our organisation. We meet in Wales in a formal meeting twice a year. We're up in Wrexham in about three weeks' time and we were in Swansea in the autumn time. We've actually got quite a good network of geriatricians, and as a society, we're really, really keen and beginning to bring in many, many more allied health professionals as well, because being a geriatrician and probably being a paediatrician and diabetes—. It's all about the team; the geriatrician is just a very small part, really, of a much bigger team.

So, we do things that way, and obviously there's the BGS policy documents. If you look, every week there's a blog about something that someone is doing that's good and that's relatable. I'll be looking at my own service and thinking, 'Oh, they did this in Worcester', or somewhere like that, because it doesn't necessarily have to have been in Wales; there are many areas that have done good things. Because it's about limited resource, isn't it, and bang for your back—where do you get the most benefit for the most people. And that's where good practice stuff comes in.

So, there is a vehicle—it's great to hear that there is, by the way, and the work that you're doing—but is that because the BGS are set up in a way where that happens, because that's what the BGS does, whereas another organisation might not be set up in that way? It there a role for Government to play in supporting this?

Yes, I think very firmly there is. I'm a member of a few other societies, but I do think the BGS is actually really forward in the use of reaching out with blogs, digital technology; we've actually got a WhatsApp group with geriatricians across Wales, which has actually been really helpful preparing for the inquiry, and that kind of thing, saying, 'What are you doing in your area?'

But as far as I'm aware, there isn't really a formal Government way that we case study. And actually, you could easily case study things, couldn't you? You could go to your local services and say, 'What are the case studies of things that have gone well and what hasn't gone so well?' Because there is no one-size-fits-all, and the populations are very different. We've alluded to rural medicine, we've alluded to socioeconomic deprivation, which is felt as much if not more in older adults than in younger people. The access to services really, really is very altered by that. But I do think that Government could play a role in showcasing good practice and actually encouraging: 'Oh, they did that really well here. What can we do to support this area in doing a similar thing?' Definitely, yes.

11:15

Thank you. I diverted a bit there, Chair, but I thought it was an important point to follow up. And your comments, Dr Leopold, has brought me on to where I probably should be in my round of questions, but perhaps to Mathew and Dr Wilkinson as well. Dr Leopold mentioned the socioeconomic disadvantages of some communities, where people in deprived areas are more likely to suffer with severe, chronic conditions. What sorts of actions can be taken to address those inequalities? Shall we go to Mathew first perhaps and then to Dr Wilkinson?

Yes, I think when it comes to diabetes, you have a higher rate of diagnosis in more deprived communities, and also, there's a high risk of type 1 diabetes and type 2 diabetes in minority ethnic communities as well. I think that the work that needs to be done here is awareness and working with local groups and communities. So, we, as a charity, try and do that as much as we can by holding health hubs and going to the communities themselves and working with local authorities to try and share information and good practice. But I think more does need to be done in terms of ensuring that that equality is there and having those real discussions, especially around food and the cost-of-living crisis as well.

Type 2 diabetes, especially, is health-related and diet-related for mostly half of diagnoses. And I think that, when it comes to food and it comes to that approach, more needs to be done here in terms of awareness of what is good food, how to afford good food, but also the support for people to do that in the first place. And I think, when tackling these issues, eating healthily is really expensive, and so, we do need to find a way and a measure to support people in purchasing the right food for their family.

Thank you, Mathew. Dr Wilkinson, perhaps I'll pose the question: you referred in your earlier response to age-appropriate services, and I think you talked about 17 to 25-year-olds. Do you agree that there also should be community-appropriate services, where different communities across Wales and across the UK experience different things?

Completely, and I think asset-based healthcare is one of those strategies that we should be employing, where the assets are identified within the individual, within the community, and then the organisation, and the organisation being, 'How do we bring those community assets to the assets of the individual?' So, absolutely, and fundamentally, that can have huge benefits. Because we know that each community is different and they have different challenges and they know what solutions are right for them. So, I think that being community focused is essential. But, obviously, then there are problems with economies of scale, especially for paediatrics—that can be an issue—but we can resolve that by how we work together. 

One of the things that Nicky raised there was that access to how communities are making those solutions and one of the reasons that brought me to Wales was the whole concept of value in health, which is about how we identify those systems changes to healthcare that bring greatest value, so that there are better outcomes with the same pot of money. So, there's the team that's led by Sally Lewis, which is now at the level of the NHS Wales Executive and Welsh Government, that I think we need to be pushing, so that we are exemplifying all of the best practice that's happening at scale and allow it then to scale further. So, I think that we already, in Wales, have that vehicle for that.

The committee received written evidence that highlighted differences in risk factors for certain conditions for people from black, Asian and minority ethnic backgrounds. Do these—and I open the question to all three of you here today—inequalities affect your particular areas and, if so, how should they be addressed? Shall we go back to Dr Wilkinson and then around that way, Chair? I'm conscious of time as well, so we might have to be brief in answering. Dr Wilkinson.

Yes, so, it's about how we reach those patient groups that are difficult to reach. So, you have to have an active process for that. You have to engage the communities—and it's back to communities again—and maybe the leaders of those communities to help with that navigation. And it's then about having that tick list of making sure that, not that you've just engaged with or spoken to them, but that you have a process of active engagement. And I can think of communities in my role where I've had to reach out to local leaders to better understand how we can provide impact. So, that's just at a personal level.

11:20

Thank you. And it seems again that an area of good practice sharing should be more thought of. Mathew.

Yes, and another thing to add to that is the stigmatisation as well. So, I think, for a lot of communities, there's that element of living with diabetes and the condition. Some people are probably aware that they might be at risk but they don't want to approach us, or they fear the diagnosis themselves and therefore might not approach the clinician. So, for the black African and Asian communities, there is a higher risk. It is attributable to genetic factors as well as dietary and community factors. And I think there needs to be more work done there in approaching this, ensuring that when they come to services, they're getting dedicated services for themselves, and that that is a safe environment. And I think there needs to be more work done around this. But also in more deprived communities too, there is that level of stigma around diabetes. People do feel ashamed that they have a diagnosis, and we need to get over that, in that sense. And, by getting over that stigma, we can help them and we can ensure that they're getting a better quality of care. And I think that's the element that we need to start working on and addressing. 

I think we certainly do see a change in the way people approach healthcare in certain ethnic groups, often because in families maybe there is more of that multi-generational family, and often we will find that patients are presenting very late with dementia or very late with frailty, with a family who have just been doing a wonderful job and just carrying on very quietly and uncomplainingly. But, I think reaching out to them—. Recently, actually, at our meeting in the autumn, I was lucky enough to make contact with Muslim Doctors Cymru, and if you don't have the details for them, you should really speak to them, because the group came from doctors in COVID reaching out to the Muslim community in the Newport area, particularly around aspects of talking about end of life, talking about advance decisions. But actually, on the back of that, they've developed a much bigger network and they've started going to mosques and doing health screening, offering liver screening, all sorts of things. And a few of my colleagues locally have now got involved, and I think this is a really huge example that really opened my eyes. They are themselves Muslim doctors, but knew how to access their community, but it is definitely the kind of thing that could be replicated across—I would feel—ethnic communities in Wales. I would be more than happy to give the committee—. I'm sure that the person who I met, who is an amazing individual, I'm sure would be more than happy, I think, if you wanted evidence or just for him to give you some details, I'm sure that he would be more than happy to do that. That was one of the best examples I've seen of people taking ownership of their own community, going out there and then the community coming in. And I think they've been doing some brilliant work there.

If I could add to that, they've been doing work on Ramadan as well and doing some excellent resources and helping people who go in to Ramadan to have support on living with diabetes. I think you were talking about Dr Ali there—

—who has done fantastic work. So, I'd echo that. 

We will. Thank you, Jack. We've got about 15 minutes left, and we've got three further Members who want to cover some sections. We've got Joyce to come in, then we've got Mabon, and then we've got Gareth. So, that means about five minutes for each section, so I don't need to say any more, I think we all understand we've got to get to the point in the questions and the answers. Thank you. Joyce Watson.

I want to explore support for unpaid carers and also for their families, and the importance is recognised by us, but is it recognised more widely?

I think, within my work, often it is the care crisis. I talked to you about the unveiling, the health crisis that unveils, and what often happens with older adults is that someone has been managing, just about, with their caring responsibility, and then something happens—whether it happens to the carer because they get ill themselves, whether there's some external thing, or whether it's the person who is living with the illness and being cared for has a slight destabilisation—and often that's the tipping point, isn't it? When the crisis happens, they need the GP, they need hospital, they need whatever service it is. And I think from my experience—and I've been a carer myself—but also from speaking to carers, the services are just not quick enough to react to that crisis. And that's the really big thing.

So, for example, someone might be at home having twice-a-day care, but, actually, during that health crisis, that family member might want to continue caring, but they now need four-times-a-day care, and that can't happen quickly enough. And, so, unfortunately, that person then tends to default into secondary care into hospital, which is often very traumatic for the carer, because when people are providing 24-hour-a-day care—whether it looks like 24-hour-a-day care, if you're a carer, whether you're there 24 hours a day or not, people's experience is that it is 24 hours a day because you never know what phone call you're going to get, how that's going to look—and for them, coming and having to give the control to the hospital or control to healthcare, I think, can be very, very traumatic, actually, because they know their relative best.

My experience is that our services are not very good at being responsive and reactive. There are pockets of it, as I've mentioned, some of the hospital at home and things like that, but the scale is just not there to support people. And also, the idea of respite. So, obviously, people are entitled to respite, but that's often done in an institutional kind of way, which sometimes carers find destabilises the care because that person then gets—if they've got dementia, it can make that appear worse for a period of time. And, so, people might want more care coming in for a couple of days into their own home. So, again, it's not that person centred. I think it's recognised, I would say, medically and within our society, it's actually a huge sort of portal of what we do, but I don't think our services are reactive enough, and that would be the way I would frame it.

11:25

So, you said there are areas of good practice. Could you tell us, guide us to some of those that look at the whole family, not just the carer and the cared for?

Okay. So, the service I mentioned in Neath, they would take a phone call from a GP, the ambulance service, whatever, and either a geriatrician or a very senior nurse would go out, assess the patient in their own home, make a decision whether that person really needs to come to hospital or not. If they feel that they don't, they would often, then, put in place things like antibiotics, maybe some extra support coming in from some healthcare or support worker level people over a number of days to weeks, in order to try and manage that crisis as best they can at home. But, obviously, that service gets saturated and, you know—. But that is a good example of one way that that is happening.

I want to move over to the care of children in this question, and I want to ask whether there's sufficient support for children, both as carers and cared for.

I would like to come back to you on that, maybe with some written support, and we can look at that as a team. My personal experience is that there isn't adequate support for young carers. And, so, trying to engage social services for support of young carers is often really difficult to access.

I'd say the provision of information and support. Diabetes is relentless and, so, as we're looking to more population cohorts, you know, access to technologies, accessing new care services is vital. I don't think people are aware of the level of improvements that have been made in technology, and I think, when you have access to that, you lesson the burdens of the care the provider has to give. Because the technology is that good now, these days, that you can actually reduce the pressure of diabetes on that individual. So, I would say more information on services available.

Diolch yn fawr iawn, Cadeirydd. Dwi am ofyn trwy gyfrwng y Gymraeg, felly, sicrhau bod yr offer cyfieithu gan bawb ac yn gweithio. Rydyn ni'n gwybod, wrth gwrs, o ran mynd i'r afael â lot o'r cyflyrau iechyd yma, mae yna dystiolaeth yn dangos mai'r ffordd orau ydy blaenoriaethu atal y problemau yma i gychwyn. Felly, pa gamau allweddol ydych chi'n meddwl dylai Llywodraeth Cymru a gwasanaethau gofal iechyd eu cymryd, yn eich barn chi, wrth gwrs, er mwyn atal y cynnydd mewn cyflyrau cronig i gychwyn?

Thank you very much, Chair. I want to ask my questions through the medium of Welsh; I just want to ensure that everybody has the translation equipment and that it's working. We know, of course, in terms of addressing a number of these conditions, evidence shows that the best way of doing so is prioritising prevention of these conditions arising. What key actions do you think Welsh Government and healthcare services should take, in your view, of course, to prevent the rise in chronic conditions to start with?

Yes, I don't mind coming in straight away. So, yes, with diabetes, I think what we need to do here is look at, like, all-Wales, pan-Wales programmes. So, the all-Wales diabetes prevention programme, led by Catherine Washbrook-Davies, has been instrumental in terms of putting forward the best case to support people from not going into diabetes. So, these are people that are at risk, and whether they're overweight or obese, they get put on a programme to support them. And, of course, there are other programmes that we can also look into. So, there's our remission programmes as well, and these are people who have been newly diagnosed, within six years of diagnosis, who will go as an all-diet replacement pathway. This will also help them put their diabetes into remission. Around 40 per cent to 50 per cent can do so. By having these all-Wales pathways in place, prevention and remission, you can reduce the impact of diabetes on someone in the later stages.

So, diabetes, like I said, is relentless. Complications can occur in terms of looking after your feet, looking after your eyes, looking after your kidneys. When not looked after and when diabetes does have resulting complications, the ongoing impact of that on the individual in terms of their living circumstances, but also on the NHS, continues to increase. And I think there have been several evidence—. You've had Professor Jim McManus here before giving evidence. The 10-year outlook on diabetes is quite poor. We're looking at about 280,000 being diagnosed by 2035, possibly even higher, and this obviously is paramount on type 2 diabetes. To ensure that we have these pathways and programmes in place is essential, as well as awareness.

On the flip side, with type 1 diabetes as well, and other forms, what we need to look at here is the eight care core processes in Wales, and, unfortunately, we have not been performing well. They have been going down year upon year, and, as I said, this year we can't really evaluate it because two health boards haven't reported. However, what we could do here, again, is awareness around the support you should be getting. Whenever you speak to people living with diabetes, they are unaware of what treatment or what support they should be getting at general practice level and, of course, with their diabetes specialist teams. So, again, we need to ensure that people are getting those checks. Having those checks in place prevents long-term complications, especially in retinotherapy, in eye care, because then, of course, if you lose your eyesight, you're looking at further complications in care and it's putting further pressure not just on their lifestyle but also on other services.

Lastly, I'll finish on technology, because having good access to technology for people living with diabetes is essential, and, whether it's type 1 or type 2, following the NICE care guidelines for people living in Wales will assist people in managing their diabetes well. And I can see, Russell, the time there, so I'll stop.

11:30

Diolch yn fawr iawn, Mathew. Mae gen i gyfres o gwestiynau eraill a rhai penodol, felly. Dwi'n meddwl bod cyfraniad Mathew wedi bod yn werthfawr iawn yn fanna. Os caf i fynd at gwestiwn arall yn sydyn iawn, at Dr Leopold, os gwelwch yn dda, o ran y dystiolaeth ysgrifenedig sydd wedi cael ei roi gan y gymdeithas geriatrig yn dweud bod gwasanaethau sy'n nodi pobl sy'n mewn perygl o ddatblygu bregusrwydd, neu rai sydd â bregusrwydd ysgafn ac sydd mewn perygl o ddirywio, eu bod nhw'n gallu hwyluso pobl i fyw'n annibynnol am fwy o amser. Tybed a allai Dr Leopold, felly, rannu enghreifftiau o arfer da gwasanaethau rhagweithiol sy'n trio nodi ac atal eiddilwch. Ydy'r gwasanaethau hynny yn cyrraedd pawb sydd eu hangen nhw, os gwelwch yn dda?

Thank you very much, Mathew. I have a series of other questions and some specific ones. I think Mathew's contribution has been very valuable there. If I could turn to another question very suddenly, to Dr Leopold, in terms of the written evidence that's been submitted by the BGS, which says that services that identify people at risk of developing frailty, or those with mild frailty who are at risk of deterioriating, can enable people to live independently for longer. I wonder if Dr Leopold, therefore, can share examples of good practice of proactive services that aim to identify and prevent frailty. Do these services reach all who need them?

What we want is not to live as long as we can; it is to live as well as we can for as long as we can. I'm just going to take the headset off—sorry. I could hear my own voice in the earphone.

Basically, it's actually similar. What's good for older people is good for the whole service, if that makes any sense, and so, actually, with primary prevention—reducing cardiovascular problems, alcohol—diabetes actually reduces. If you do that well, you reduce your risk of ending up frail with a long trajectory of ill health at the end of life, which is what we aim to avoid. We know that you can retrain, so even in your 90s, with a decent exercise programme, you can get stronger, and people can fall less, et cetera, et cetera. But really it's that middle life time that we need to be reaching out for. I've just starting doing weight training and resistance training, because, after your 40s, you really need to be, and you've got to practice what you preach, don't you? So, that's really, really important. In terms of strength and balance classes, a lot of community centres and leisure centres will be running strength and balance exercise classes particularly aimed at people who may already be falling, but actually we should be aiming it at everybody. And the kind of thing that I'm paying to do a few times a week, people should be getting for free, because, actually, if we were investing much more heavily, particularly in middle life, in people's strength and balance and their sense of social well-being—we know that the more integration you have socially the less likely you are to get dementia, for example—if we were doing that for free and it was accessible, not at £6 or whatever it is I pay per session a few times a week, we would actually save a huge amount of money, I would argue, for the economy, because we would be pushing. We're never going to get rid of ill health at end of life, but what we want to do is try and push that envelope so that ill health at end of life is as short as it possibly can be. So, strength and balance classes are a good example of the way that people are doing it, but it needs to be younger, and it needs to be on a much bigger scale, and it needs to be free. I'll try and think of some other examples, but you may want to go to my colleague first.

11:35

Can I just come in? I think we have a framework for dealing with social determinants of health, and Michael Marmot's report, and numerous other epidemiologists, have produced fantastic stuff. We've got something to learn from Gwent, which is a Marmot region. There's some data that's coming out now to help improve this, and we can't talk about social determinants without talking about kids, because we know how vital it is, the first 1,000 days. We don't have enough health visitors to manage that and support families that, perhaps, are in crisis, which sets the child and a life up for later.

So, we know that obesity has increased significantly between those in the lower quintile compared to the upper quintile. The disparity now is 7 per cent more in the lower quintile. So, we have to address this, and I think we have to address this prenatally, and with families. So, then they're school-ready. So, then their participation at school is right, and they're increasing their physical activity. And we know how important school presence is, and the outcomes from that, and how that changes whole communities and life opportunities and health outcomes later on—hugely impactful.

It's very scary—we're starting to see children presenting with type 2 diabetes. That is scary. We should not be seeing this in our society. We get nurses saying we have to start thinking of new pathways. That shouldn't be happening. So, we definitely need to start working holistically at school level to be looking at diets, education, lifestyle choices, because, unfortunately, if they're presenting as type 2 at that young age, you're looking at a whole life of complications, going forward.

Sure, sure. Just checking, Mabon, have you managed to ask all your questions you wanted to cover?

Do, diolch. Roedd gennyf i gwestiwn ar raglen atal diabetes Cymru hefyd, ond dwi'n meddwl bod Mathew, chwarae teg, wedi ateb hynny ynghynt. Ond roeddwn i am ddod yn ôl at Dr Wilkinson i weld os oedd o eisiau ymateb ar y cwestiwn gofal ataliol, ond dwi'n gwybod bod amser yn brin.

Yes, thank you. I did have a question on the all-Wales diabetes prevention programme, but I think Mathew, fair play, has answered that earlier. But I did want to come back to Dr Wilkinson to see if he wanted to respond on the preventive care question, but I know time is short.

I thought I answered that in saying that we need to address it before conception—

—for the first 1,000 days. And we need to address it better in the child poverty strategy where we need to embed physical health and mental health in the poverty strategy, and that was an omission.

Thank you, Dr Wilkinson. Gareth Davies, we've got about one minute left for this session, but we'll extend that to five if you're pointed in your questions. And sorry in advance, Gareth.

No, it's fine. I appreciate time's short, and we have covered a lot, which is why the first question that I had has already been answered by Mathew. But my question to Mathew would be—. Your written evidence highlights a downwards trend in the NHS providing essential yearly checks for people with diabetes. What's the reason for this, and what should be done to ensure that patients are receiving the checks that they need to manage their diabetes?

That's very hard to answer. There have been quite a few elements complicating, in terms of people getting their check-ups. There is still, unfortunately, a lag from COVID-19 in terms of people accessing care. We don't have the data, for example, around retinotherapy and are people accessing eye care treatment, which is held by Public Health Wales. I'm assured that that will be reviewed by Professor Jim McManus in his work.

But I think, in general, what I would say is about the awareness of the checks that should be conducted. Obviously, they're done at primary care level, but also, depending on where the diabetes teams are located, it could be secondary care. These checks should be done every year. When we speak to people who are newly diagnosed, they're unaware that this should be done, and they're also unaware of what complications can arise if they're not done. So, I think work needs to be done when it comes to being diagnosed, especially on type 2 diabetes, so that the first point of care is you get pointed towards, say, either us as the charity Diabetes UK, or you get pointed to these resources that can assist you and help you, and having that information to hand probably is the best armament and tool available.

With that, of course, is making sure that providers are there. We have noted from the all-Wales patient reference group a lack of, unfortunately, diabetes specialist nurses in place, and there's a continued ageing workforce in that area. I understand there was a review of workforce pressures being undertaken by the Welsh Government, but what we're getting back is that there's a delay in responses, say, from a patient's side, so they may e-mail to find the results of their test and not get the results back, and therefore it is months sometimes until they can seek treatment for it. It's also the lack of face-to-face care. I know we're going to more digital, and the NHS app is amazing and people can access services through that, and that will see a complete change in care, but, for those who like the person-centred approach, having that lack of face-to-face contact does result in complications. So, when people have, say, been diagnosed with type 1 diabetes, but on their patient record it says type 2 diabetes, that sort of stuff shouldn't be happening. We're having complications when it comes to information being transferred from not just England to Wales, but health board to health board. So, again, there needs to be a review around digital services, looking across all health boards, but you can't have one health board giving out written notes and the other health board being completely digital; it wouldn't work.

And then, on top of that, we have technology, which, to me, is the other avenue that can really help, and not just the app, but actually having continuous glucose monitors or flash, but also having hybrid closed loop and pumps. Access to technology gives so much information to the individual, and we need to start harnessing that information on an NHS level. If we can start accessing updates that are on their phones, on their apps, we can start having a patient-centred approach, so that we can look at that information and support them from day one, rather than, in a sense, that information being lost.

There used to be a log book before tech, and apparently people preferred the log book because they used to note everything down, but now that's gone away and we've gone to tech, but, with the systems out there picking up information, we're missing so much, and, of course, that will result in complications. Forty per cent of people meeting those eight care core processes is not viable; we should be hitting 80 per cent and 90 per cent, and that's what we'll be challenging the Government on, going forward.

11:40

You've answered all my questions in one blow there, Mathew. I should ask you about technology and how we reduce barriers, but I think you've covered that sufficiently in that answer.

Yes, just to support what Mathew's saying. I think we need to look worldwide about how we're delivering care. So, there's the Diabeter institute in Rotterdam, which uses largely a remote platform and has amongst the lowest, as far as I understand it, HbA1c, which is a great monitor for healthcare. But, it's supported self-management that it comes back to, and we can use tech to support that, but the culture is supported self-management.

One finally to Dr Leopold. The British Geriatrics Society's written evidence says that comprehensive geriatric assessment should be available to older people with chronic conditions. To what extent is this embedded in healthcare for older people in Wales?

So, I think, where the person presents in the right place, it's very good. So, if you're lucky enough to present to a front door, so at an A&E or at a medical assessment unit where there is a frailty service at that front door, then you're likely to get comprehensive geriatric assessment, which is just a multidisciplinary way of looking at an older adult. Within the community, some of the virtual wards, some of the acute clinical teams will be doing that, but if you present with a different illness—so, for example, if you present with certain surgical problems but you're living with frailty and older age—you're much less likely to get comprehensive geriatric assessment. In most health boards, I think we're achieving about 20 per cent to 30 per cent comprehensive geriatric assessment of people presenting, which is much, much less than we should be, and the problem with CGA is staff. It's not a pill that you can just give; it's actually very, very labour intensive. It's four hours of multidisciplinary team assessment and intervention, but it's very, very cost-effective, and means that people are much more likely to end up alive and in their own a home in six months' time than institutionalised or dead. And so, it's actually a cheap intervention; it's just that staff always appear costly compared to something that you can just give a medication and walk away from. So, it is extremely piecemeal, I would say, CGA, and there is an element of luck to what your illness-defining thing is that governs, really, whether you get CGA versus whether you don't get CGA, and that is a big problem.

11:45

Can I just end the session with this: our inquiry will end with a series of recommendations to the Government, so, considering what recommendations we could make in terms of supporting people with chronic conditions, if I come to each of you individually, can you perhaps give me some bullet points, key headlines, that you think that we could include within our recommendations? Just the quick bullet points. Would anybody like to come in first?

Yes.  I should say I've got a lot—20—and a support; I'll forward that to you. But, out of those 20, I'd say the eight care core processes and highlight it—so, awareness of it. Access to technology is vital, and we need to start rolling out that tech and awareness of it. Mental health provision has to be changed for diabetes; we can't continue to have this gap in adult services. This must be addressed, because it's causing severe complications. Prevention and remission—so, obviously preventing diabetes and supporting people going out, remission—and then education. So, that's, obviously, educating people living with diabetes, but also the public in general around prevention and health.

So, I think prevention is massively important, and, at the point at which prevention isn't working, it is actually about recognition of having many chronic conditions and, in our case, frailty, and then actually empowering the individual and their family to think about the future. We're not very good at introducing the future. For example, with a dementia diagnosis, at what point do you mention or do you introduce the idea of end of life? And so many people don't get the good end-of-life care that they might aspire to have when they're actually able to advocate for what they might want. So, it is actually about pre-emptive care, what's going to happen in the future. And we talk a lot in BGS, if I had to give you one highlight, that it's what matters most to that person—that is really our driving thing, actually, around care for people with chronic conditions. It's what matters most to them, and ergo that is often the family support network around it. And I think my other thing is the reactivity of services. They need to be quicker to react, and that would prevent the complete unravelling that ends up in hospital, and hospital is often a very difficult and hard place for people living with multimorbidity to be.

I think the first thing is that many long-term conditions begin in childhood, and so we just need a policy that looks at child health from the start and how it works for school attendance, and, in terms of the child poverty strategy, that really needs to embrace health in that. We need better local access, and this was talking to asset-based healthcare that builds communities into supported self-management, and that would include peer support. It's great that we have representation here from the diabetes charity, but I think just charities in general we just need to be working closer with, as well as industry, and that's been mentioned as well.

And then the final thing is—. Well, we need better data in paediatrics; we really need better data that would help us to reorganise our care. And the final thing then is age-appropriate care. It's about how are we managing, really, the period from 12 to 25, and we could reframe that and reorganise that, or put systems in place that would work for that population.

I did. Thank you, Chair. I just wanted to note that I made a mistake earlier on when I was questioning—I didn't refer to Dr Leopold by her professional title, I'd noted it down wrong, and I wanted to rectify that and apologise.

So, I'm absolutely fine, no problem at all.

I'm a very informal person, don't worry.

Thank you so much. Thank you for saying, Sarah. Thank you so much, all, for your professional input into our inquiry. It's very much appreciated, because we know you're all busy people, so thank you so much for your time this morning. Diolch yn fawr iawn. We'll take a two-minute pause so we can get ready for the next set of witnesses.

11:50

Gohiriwyd y cyfarfod rhwng 11:50 ac 11:55.

The meeting adjourned between 11:50 and 11:55.

11:55
4. Cefnogi pobl sydd â chyflyrau cronig: sesiwn dystiolaeth gyda'r Gymdeithas Fferyllol Frenhinol
4. Supporting people with chronic conditions: evidence session with the Royal Pharmaceutical Society

Welcome back to the Health and Social Care Committee. This is item 4 in terms of supporting people with chronic conditions, and we're taking some further evidence from witnesses before us today. So, if I could ask the witnesses to introduce themselves for the record. Elen, I'll come to you first.

Bore da. Good morning, everyone. I'm Elen Jones, director for Wales at the Royal Pharmaceutical Society, and a pharmacist by background.

Hi. I'm Chris Brown. I'm a fellow of the Royal Pharmaceutical Society, recently appointed clinical director in a health board in Wales, and have been a consultant pharmacist dealing with chronic kidney disease—so, chronic kidney disease management—for over 17 years. So, I'm here in that capacity.

Thank you. I appreciate you both coming in today. What role do pharmacists play in supporting people with multiple chronic conditions?

Well, a significant role. And it varies across different settings, actually, depending on where pharmacists are working—whether in primary care or secondary care or in community pharmacy. Often, community pharmacy will be the first port of call for people who are experiencing symptoms of ill health. Often, they will raise awareness of things that might indicate a chronic condition. The preventative measures that can be taken by work with the community pharmacy team is extremely important to keep people well, and, when they are diagnosed, to continue to keep them well and prevent that disease progression. Pharmacists working in primary care will see people, alongside their GP colleagues, that maybe are newly diagnosed with chronic conditions or progressing chronic conditions. And then we have colleagues in hospital who will generally see those that are more significantly unwell with chronic disease management. Obviously, a core focus for pharmacists is the medicines that are being used, but it is really important that that is a part of their holistic care, and really understanding what patients want to get out of that care, working with other colleagues within the multidisciplinary team. And I have to stress that, really, the patient is the most important person in that multidisciplinary team, so that we can take their lead in what they want to get out of their treatment.

Thank you. Thanks so much, Elen. Can I come to you, Chris Brown? If I perhaps expand the question a bit as well, and also ask you to address what you think the barriers are, from your perspective, in terms of providing person-centred care, and how they can be overcome.

Okay. I think, like Elen said, where pharmacists offer the management of patients with chronic disease depends on what sector they're based in. So, we traditionally see the public face of pharmacy being through community pharmacy, and that plays a significant part. With chronic disease, especially complex chronic disease, pharmacists are using quite complicated medicinal products to manage those, life long. So, they're often the prescribing, the point of contact, for a disease progression, and altering therapies in relation to how they respond to those treatments. So, very often, chronic disease, like chronic kidney diseases, for example, can be managed from specialist centres, where care is co-ordinated from hospitals but where the actual administration of these medicines is done close to the patient's home. So, they're very often the point of contact for specialist advice in hospitals, reaching out to primary care settings for chronic disease management. So, it very much depends on the disease area and where the pharmacists are based. And like Elen said, it's pretty much part of every part of the NHS.

In terms of—. Sorry, what was the second part of your question? The barriers—.

I was asking, from your professional perspective, what are the barriers to offering person-centred care, and how can they be overcome?

Obviously, access to the right person can be an issue. So, in early disease management, I think good health literacy is really important for patients, so that they understand what the future of their disease looks like and what to anticipate, and how they can be supported in self-management for that. So, people who are given an understanding of their condition, their treatments, and given access to their records and their blood results, and know how to respond to those, are supported in self-management. And I think when we support patients with self-management and with their health literacy, they become an equal partner as part of the decisions that are made about them. So, the barriers may be understanding of disease, but there's a lot of work that goes into getting that right from early diagnosis, so that, given the longevity of the disease—chronic disease being lifelong—there's an equal partnership between the healthcare provider and the individual receiving that care. And I think that may be one of the barriers, that early education of patients so that they're informed about their condition and, perhaps, as that disease progresses, they may learn more about it. But I think that early pump-priming of health literacy is important so that no decision about the patient is taken without them, and without them understanding why those things are necessary.  

12:00

Thank you. That's helpful and clear, and perhaps Members might want to dig into that in a bit more detail. I noticed, in your written evidence, you argue that formal referral pathways should be developed for pharmacy teams to make direct referrals to other services. So, with that in mind, how do you improve people's support and care with chronic conditions, and also what services should pharmacy teams be able to make referrals to? 

If I start us off, I think as well as referral, what we often see, particularly in community pharmacy, is signposting to other facilities or systems that are available to provide support. It's not always clinicians that are needed; it may be support groups, it may be third sector groups that can provide that support for patients with long-term conditions, if it's that they need to talk to people, develop a network of people that are already living with a chronic condition, for example.

Often, what we find is that, when we signpost or refer, we're not always sure that the patient will have taken the next step, and, really, it's putting the burden on the patient to go and seek care somewhere else. We would really like to see that burden being taken away from the patient, and for us to be directly referring to more areas, maybe with the support of the digital technologies that are coming through now, so that we can be certain that they are receiving that care. 

We do find, particularly in community pharmacy, because we see people on a regular basis, whether they're well or unwell, that you do develop that trust and the chance for opportunistic advice as well. But, often, you're left not knowing have they sought that advice until maybe they come back to the pharmacy. So, having those referral pathways is important, but not about cutting out people that need to be a part of that system. I think, Chris, you could touch upon that. 

I think it also depends on where you're accessing the pharmacy services. So, Elen mentioned that, if you're accessing them through a community chemist, for example, they may be signposting as opposed to direct referrals. However, for pharmacists that are embedded into the multi-disciplinary teams for chronic disease management, either within GP surgeries or in hospital facilities, the direct referral is part of the multidisciplinary team mechanisms by which you can make those referrals in the normal channels.

I think it goes back to the point I made earlier about making sure the patient is understanding not only their disease condition, their treatments, but where to go for advice and support. Very often, someone with a chronic disease is multicomorbid and so will be accessing specialist services for particular aspects of their care. They may receive medicines from community pharmacy, directly from hospital via home care, they may go into facilities for infusions, for example. And it's bringing all of that information together.

I think one of the things that helps with referrals is, really, for patients to understand at what point they access the different generalist services versus the specialist services, and making sure there's good communication not just within those services, but that the patient is empowered to understand how those dialogues are happening about them within the different parts of the NHS.  

Thank you. We've got five sets of questions and five Members want to ask questions in each of those areas, and we've got 25 minutes left. So, it's about five minutes per section, if that helps Members as well. Gareth Davies. 

Thank you, Chair. Good afternoon, both. It's a pleasure to join you this morning. We have touched on it briefly in your answers to the Chair, but are there any other ways that the role of the pharmacist can be strengthened any further with patients, to understand medications and adhere to medication regimes? Because it can be quite complex if there's a myriad of medications that somebody's taking, whether there's a combination of those being orally taken, infusions as you've said, liquid medications—there's a vast array of them. So, can that role be enhanced any further so there are good communication streams with patients, and education to let them know about medications so they can fully understand the complexities about their conditions and the medications that they take?

12:05

Yes, absolutely. I'll give you an example from somebody with a chronic kidney disease. That person may be dialysis dependent, they may have had a transplant, they may have waning kidney function. The medicines will be bespoke to that individual, because the kidney will eliminate the drug, so the dose and the frequency of that is bespoke to the individual. They're quite complicated, quite tailored medicines. The sources are very different, so they may receive infusions from hospitals, tablets from GPs, dietary interventions from dieticians that need to be matched to their therapies. What is key is that all of that sort of information is given to the patient. There are very digitally advanced services that bring all that information, that allow patients to see their results. There's a health literacy suite that they can access to support them and their caregivers in understanding their disease, and they become autonomous in that.

So, given that complexity of care, key to that is the centralising of that information so that there is no duplication or errors that may be contradictory. And I think empowering patients with their own information is the key to making sure that nothing should be happening to that patient without that patient knowing it, and if there's a change in one sector to another, that communication should include the patient. There are really good examples where patients will actually titrate their own therapies, inject complicated biological therapies, because they've been given that health literacy. And rather than having a frequent attendance at a healthcare facility, even the most complex of care can be done close to or at home, supported by the digital infrastructure. And when that digital infrastructure is translated to a meaningful paper-based system for those who may be digitally disenfranchised, it means that we're not taking anyone out of that digital offering. What it does do is it allows other caregivers to access the information and support patients, or it means, for those who care for themselves, it takes fewer resources from the healthcare professionals, meaning that those who require a non-digital offering have the opportunity, and more time, from those who are not as au fait with self-management.

Thank you, Chris. I'll ask Gareth to come back in and I'll come to you then, Elen. Do you have a second question, Gareth?

If you've got a second question I'll bring Elen in on that, just because of time.

Yes, certainly. I was going to touch on my second question about communication. Do you believe that there are systems in place to support effective communications between different aspects of health and care services, and between professions? And if not, or even if communication streams can be improved, then what steps can we take in order to improve communication streams between professions?

Thank you, Gareth. Elen, if you want to address both questions, you can. 

Yes, of course. Thank you, Gareth. Just to add to Chris's first answer, I think the role of pharmacists as prescribers is rapidly developing across all sectors, and is something that is really great to see, actually. When we're thinking about prescribing, people often think it's just about adding more medicines, but one of the really important things about the skills of the pharmacist is that they can rationalise the medicines that a patient is already on. We know that medicines themselves can cause harm when not used appropriately, or combined with other medicines. So, often, one of the most important prescribing roles of the pharmacist is what we call deprescribing, stopping a medicine that is no longer proving to be something that is beneficial, and the risks outweigh the benefits. So just to add, I think that's an important point about how we can really help with the management of chronic conditions.

To your second point, Gareth, about communication, I think that it is improving through the use of technology. What we're seeing, for example, with pharmacists that are prescribing in community settings is that they are able to access more information now from the GP system, which is extremely beneficial and essential for safe medicine supply. What we're hoping, with the development of the electronic prescribing systems across all sectors, is that that communication will continue to increase for the benefit of the patient between care settings. We do know that the transfer of care from one care setting is a point where errors can occur, when information is not transferred accurately. There is a service, called the discharge medication review service, which connects hospitals, in particular, to community pharmacy. That's where we see the most interaction for that service, and it helps to ensure that that information is shared with community pharmacy, as well as GP practice, if there are any changes to medication whilst in hospital. And that is so important with something like chronic conditions, where patients are used to one set of medicines, and when that changes, it can be confusing, often when you're very unwell in hospital—all that new information isn't really sinking in, and we need to be able to give consistent messages.

12:10

Yes. I was going to say that there are some really good examples. I'll give another example around chronic kidney disease, where that complexity is communicated, not just to the caregivers and the various parts of the health and social care services, but, actually, to the patient as well, and accessing that information. So, there are communication barriers that the digital medicines transformation portfolio will address over the coming months and years, but there are really good examples of where communication is not just being accessed within the care system, but where that communication is making its way to the patient in a way that the patient understands it.

What we've seem from exemplars within Wales is the importance of that, and I think that gives us the energy and enthusiasm to make sure that those communication channels are as lean as possible for the purposes of efficiency, but also safety as well, and accessible to patients, so that they know what decisions are being made about them, again with them.

I know time's tight. How do you interact with people who are in their own homes, self-medicating, but have confusion? What role do you have, say, with the Alzheimer's Society, or any other such society?

Shall I come to that first? So, one of the things that pharmacy as a sector has been really involved in is dementia friends, actually. There's been a huge amount of work in training pharmacy team members across all settings in dementia friends. Often, it can be harder when patients are in their own home and can't come out to access services themselves. Often, it does involve more work with caregivers as well, and it is understanding how we can support them. There are things that we can do to make it easier for caregivers to support their loved ones with giving medicines, helping them have the information that they need, but, again, where possible, if that patient is still able to take part in their care, using technology and things like that can be helpful to get people more involved. But I do think that you're right that it is a bit of a barrier in patients' own homes, and more services that enable practitioners to go into a patient's own home to undertake reviews and things I think are essential, actually. 

Okay, thank you. I better move on; I'm conscious of the time. Sarah Murphy.

Thank you very much, Chair, and thank you, both, for being here today. I'm just going to ask a couple of questions now specifically about inequalities. To begin with, people living in disadvantaged areas are more likely to experience multiple chronic conditions and spend less of their life in good health. So, do pharmacies have a role to play in addressing these inequalities, and if so, how?

One hundred per cent. Thank you, Sarah. Pharmacy has an essential role in helping to address health inequalities. If I start with community pharmacy, when you look at the spread of community pharmacies in Wales, we have just shy of 700 community pharmacies—686 community pharmacies, as of April—they do tend to buck the trend of inverse care and, actually, we do find that we tend to have more community pharmacies in deprived areas, in very accessible areas, and in rural areas. I think, Sarah, you're right that it's really important that we make the most of healthcare professionals in those areas by investing in services where we can reach the populations that need them the most. You're right, you do seem to get a lot more chronic conditions in those areas, and I think the preventative measures that we can do from a community setting is really important—taking part in public health education and messaging, which community pharmacy does on a regular basis. One of the things with campaigns like that, actually—it is really important that we think of the outcomes of that campaign and is it having the impact that we want to see, and then are we getting the referrals and people being directed to more intensive care that they need. Maybe, Chris, you'll want to pick up on that.

12:15

Yes, I was going to say the accessibility of a local pharmacy. Anybody can go into a community pharmacy at any time and very often, if they can afford it, can access treatments. However, with the expanding role of community pharmacy, through the prescribing services that would ordinarily have required an appointment with a GP through the common ailment services, there is accessibility to help people with the affordability of self-management that doesn't necessarily require a GP appointment. So, community pharmacies are uniquely based in these areas, as Elen has said—they're well represented where the need may be the greatest. And there is a shift change to the clinical offering from community pharmacies to address those needs where they may be the greatest and where they potentially can't be afforded by individuals to purchase their own treatments.

Yes, and we are seeing a huge increase in the amount of people that are accessing both the prescribing service in community and CAS, the common ailment scheme. Just this February, there were over 33,000 consultations for common ailments, over 10,000 for prescribing, which is three times what we saw last February. So, you can see patients are wanting that service, they're using it. When they're having that good experience from it, they're going back. We would love to see more investment where things are working well to see actually where that could take us. Sadly, we have seen closures of pharmacies as well, although there's a really good outcome for patients in the services and the clinical services that are being offered. Pressures are very high across all sectors, as we see in other healthcare professions.

To be honest, you've started to answer my second question, because I agree with you, I have many community pharmacies in my own community and everything you've said I agree with, but I'm concerned that there's a danger that we're going to lose them. So, you've started to answer that for me, so thank you very much, that was what I was going to ask, Chair.

Diolch, Cadeirydd. Sarah is right in what she says, community pharmacists need supporting, don't they? They're often at the front line of seeing patients. We saw that in COVID, when they got the brunt of a lot of situations. They do need supporting. I want to touch on the mental health support that you offer. As I say, community pharmacists are the first port of call for many. Many people with chronic conditions have mental health conditions as well. Many people with mental health conditions have chronic conditions. What role do community pharmacists play in terms of signposting for mental health support and how could that be expanded? Or, if not, tell us why not.

Thanks, Jack. Mental health first aid training is another area that is commonplace throughout community pharmacy. You are right, though, when we are talking about the referral pathways and signposting, to me that is the one area that is probably one of the most important areas for good signposting and referral to where patients can receive interventions as early as possible for mental health support. We need to get rid of any stigma around it. It needs to be part and parcel of healthcare. When people need support for high blood pressure, they're normally okay about having medication or having support for that. It should be exactly the same for mental health conditions. Again, community pharmacists do tend to pick up on changes with their patients, in personality and mood, because they have that frequent interaction with them. So, I totally agree, Jack, I think that is an area where we need more support and more referral happening, so that they're getting the right treatment and support. It's not that community pharmacy can do everything, but when you are the first practitioner that people see, you need to be able to directly refer them for that support, rather than there being a wait time, and, for me, mental health is one of those areas that has to be up there.

On the flip side, I also have to stress that we have to look after the mental health and well-being of our pharmacy professionals and our healthcare professionals. At the Royal Pharmaceutical Society we do an annual survey of our members, and for the 2023 results that have just come out, it shows 86 per cent of pharmacists at risk of burnout. It does also show that where pharmacists are getting to use their clinical expertise in more advanced areas, they are getting far more job satisfaction, but looking after both patients' and healthcare professionals' mental health and well-being has to be a priority.

12:20

I'd fully agree with all of your points, but particularly your last point on the pharmacists themselves. Just briefly to go back, and I'll finish there, Chair, when you say you would like to do more, and you need support in doing that, is it support in general of community pharmacists, and keeping them open—as Sarah says, she's worried that some are closing—or is there specific support around mental health that you think we should give?

For me, I think it's both. So, the mental health first aid training, which is accessible for all community pharmacy healthcare teams, is really important, so that we are picking up on when people are struggling and we're able to have those open conversations. But there are two angles to this. There is that support to enable us to have time, because, obviously, when we're undertaking over 33,000 common ailments service consultations and you have one pharmacist, we have to make sure that we're remaining as accessible, and, often, that does require investment as well. 

From the other side of the spectrum of the NHS, there are mental health services where pharmacists are intricately involved in the prescribing of specialist therapies. The other thing is that the therapies that we offer and the treatments—the pharmacological treatments—have an influence on physical health as well. They often come with side effects, which becomes a circular thing around the experiences of the patient. So, pharmacist prescribers are actively involved in specialist mental health services, and the communication to the community pharmacy is about making sure they're supported long term with their compliance issues and the non-adherence to medicines.

One of the things you asked was, 'Do we need more?' I think one of the things to balance is that community pharmacy is becoming a far more clinical offering. Hospital pharmacy has been driving that charge for many years, where we see the most complex care being prescribed by pharmacists and managed, sometimes exclusively, by pharmacists.

However, one of the things that we need to balance against the ask of pharmacy is the core delivery of what we do, and that's the supply of medicines reliably and safely to patients. At the moment, with the shortages that are within the system and the cost escalation of medicines, more time is spent on doing what would be seen as the traditional role of pharmacy, which is the reliable supply of medicines. As we ask pharmacies to do more, this is against a backdrop of time where the procurement and supply of medicines is becoming challenging. So, there's a sort of multipronged demand on pharmacy to expand its services while maintaining its unique selling point.