Health and Social Care Committee

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.

Lovely, thank you.

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

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?

Are you happy if I—?

Yes. Nicky.

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.

Thank you, Dr—. Is it 'Leopold'?

Leopold, yes.

Leopold. Thank you, Dr Leopold. Mathew Norman, do you want to come in?

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.

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.

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.

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.

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.

Thank you very much. Thank you, Chair.

Thank you, Sarah. Jack Sargeant.

I can see Dr Wilkinson wants to come in, I think, Chair.

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.

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 buck—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.

Thank you. I diverted a bit there, Chair, but I thought it was an important point to follow up. And your comments, Dr Leopold, have 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.

Thank you. Can I ask one more question, Chair?

Yes, sure.

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.

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.

Thank you. Dr Leopold.

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.

Thank you.

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—

Yes, and Dr Rahman.

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

Thank you very much. I appreciate it.

Yes, I think that would be really useful to pick up on, Chair.

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.

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?

And as briefly as possible.

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.

Okay. And Mathew?

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.

Thank you.

Thank you. Mabon ap Gwynfor.

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.

Thank you, Mathew—I appreciate that.

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 deteriorating, 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.

We'll do that and come back, maybe. Dr Wilkinson.

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.

Thank you.

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?

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.

Dr Wilkinson.

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

You did, indeed.

—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.

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.

Gareth, I can see Dr Wilkinson wants to come in.

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.

Thank you.

Thank you very much.

Any other questions, Gareth?

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.

Thank you, Dr Leopold.

Thank you very much.

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?

Sure.

Mathew.

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.

Yes. Thank you, Mathew. Dr Leopold.

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.

Yes. Understood. And, finally, Dr Wilkinson.

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.

Thank you. Sarah Murphy, did you want to come in quickly?

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.

Dr Leopold is—

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.

Thank you very much.

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.

Thank you.

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.

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?

Thanks, Gareth. Chris Brown.

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?

I was going to see if Elen had any additional comments.

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.

Thank you. Did you want to come in, Chris?

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.

Another quick question—

Yes, briefly.

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?

That's a good question. But just briefly, if you can.

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.

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.

Thanks for that. Do you have any further questions, Sarah?

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.

Thank you, Sarah. Thanks so much. Jack Sargeant.

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 burn-out. 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.

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.

Any other pressing questions?

No, no.

That's great, thank you.

Thank you, Jack.

We're a bit short of time, so I'll ask Joyce and Mabon to ask their questions, but if you could look between you and decide which of you, perhaps, wants to address the question, that'd be great. Mabon ap Gwynfor.

Thank you very much. I want to go after the prevention element. I am aware that pharmacists already engage in preventative work when it comes to patients. You have public health campaigns, such as smoking cessation. So, what evidence do you have to show that this prevention work is effective? How could we strengthen that work?

Diolch, Mabon. I do think that the area that you focused on there—smoking cessation—is one of the areas where I think we have had huge success in community pharmacy, working with Stop Smoking Wales and other colleagues. But outcomes are really important. When we are adding on up to six different public health campaigns a year, it can be a lot of information for the public; it can be a lot for pharmacies to do on top of what they're already doing. So, I actually agree with you, Mabon, that the outcomes of doing this work are really important, and I would like to see us gathering more data, actually, on those outcomes.

For me—and I am a community pharmacist by background—some of the public health campaigns that I have found most useful for the patients that I've supported are ones that actually delve far deeper than just medicines, where you're taking account of, when it comes to winter pressures, whether people can afford to heat their homes, can afford to buy food. When you are thinking about the social care aspects as well as the healthcare aspects, and are able to have resources that you can signpost people to, if you do come across the fact that they are struggling with these things, they are really beneficial for starting conversations that maybe people have been too scared to start. But it is time consuming to have conversations like this, and we need to make sure that it's the whole pharmacy team that's involved in it. It's not just the pharmacist, it's experienced pharmacy technicians and counter staff or others working in other sectors, and it's the whole approach of the pharmacy team that can help.

But our public health role is absolutely crucial, because we have to help with the prevention of chronic conditions rather than just focusing on when things are not going well and we have to actually intervene.

Mabon.

Thank you. And on the back of that, if I may, because I do know that time is short, I know that the RCP have said that we should explore more opportunities such as these for simple testing for chronic conditions like blood sugar levels or blood pressure, and so on, in pharmacies, as part of the preventative approaches to healthcare. So, is work being done to that end, and what barriers are there in terms of implementing this?

Yes, you're right, Mabon.

You're absolutely correct that there is more that we can be doing. We would like to be more involved in early detection of chronic conditions, as you've just articulated. I think, for me, at the moment it's about getting the core new services that we're offering right, and making sure that they are universally available throughout Wales. We have got 167, I think, community pharmacies now, with regular prescribing pharmacists; we want to get to the point where they all have them. I think it's very difficult when services are offered in some localities and not all, because getting the consistent messaging out there to the public becomes very difficult. So, I do see a real role for us in the early detection of chronic conditions. However, at the moment, I think we need to focus on those services that have already been invested in, but I do think, with further investment, this would be a great place for community pharmacy to be. And in the vision that we have for pharmacy, 'Pharmacy: Delivering a Healthier Wales', that's absolutely where we would like chronic conditions, in the early stages, to be detected and managed, and for people who have got stable chronic conditions to be able to live at home and be at home for as long as possible, so that hospital colleagues can then focus on those with the most severe chronic illness.

Sure. Chris.

Yes. We've seen this through the lens of community pharmacy, but there are chronic conditions that are managed by complex therapies lifelong. One of the things I just want to emphasise is that the offer from pharmacy, and the prescribing and the monitoring and the follow-up of those, even though those are done from perhaps sometimes specialist centres or hospitals, is that the emphasis is to co-ordinate the care from there, so that you get access to expertise, but making sure that the monitoring and the administration of those is done close to or at the patient's home. So, there are chronic diseases that may not necessarily form the domain of community pharmacy or, indeed, primary care, and the emphasis of those specialist teams is to make sure that the care is co-ordinated, as much as possible, close to the patients' homes or even by the patients themselves, and that comes back to my point about access to information, access to health literacy, and navigating easily to the right specialist.

Sure. Have you covered everything, Mabon? Yes. Thank you. Thank you, Chris. Joyce Watson.

You've got lots of tools, resources and guidance that you've outlined already, and that's obviously helping people with chronic conditions to manage their own treatment. And, at the same time, we've got an expansion in some areas where the local pharmacy is sometimes the only guarantee of getting any treatment at all. What do you feel about clustering support through your membership, because not everybody can provide everything?

Yes, I think that's really important. We are seeing through primary care clusters that community pharmacies are more embedded within those clusters now, and I think it's actually a really good approach to think about that management on a cluster level. So, as it stands at the moment, a pharmacist will develop their prescribing skills in specific clinical areas. If you are providing a specific clinical area, but somebody else in your cluster has a different skill set primarily for their prescribing, by working together I think you're right that we can get to a lot more patient needs and actually develop the services that are needed based on the needs of your population.

And where we have members that are doing the most prescribing, what we're finding is they are the ones that have got really good relationships with neighbouring GP practices and other community pharmacies. Actually, often, the GP practices are helping to shape where they expand their scope, because they know where they're getting the most appointments being asked for, and pharmacists are then able to expand their scopes in those areas.

From 2026, all pharmacists will be coming out with the skills to prescribe. We're going to see a sea change then in how we can approach services like this. But I think Chris has alluded to some of the specialist services and secondary care, and we have fantastic examples of out-patient clinics from a hospital setting where we have real specialists. Sarah, you've been to one with us with Rhys Williams in the cardiovascular clinic. That's great, because people are getting more what would you see as your regular support from a community pharmacy, really. You're developing those relationships, but you're in the place where you can get that specialist knowledge as and when you need it, and the ability to change that treatment protocol, if need be, with the expertise of prescribers in hospital settings.

So, there's a real breadth of how pharmacists are developing these skills, and what we want to see for the future is not pharmacists that are sector specific, but pharmacists that are working wherever the patient needs them. If you're an expert in cardiovascular and the patient needs you in a clinic closer to home, we would love to see people being able to work across those boundaries a lot more easily.

Particularly with chronic disease management. Sometimes, you need the specialist to initiate the treatments and follow up monitoring closer to home, but then it comes back to good communication. So, not only do we need to see collaboration within the primary care sector—so, community colleagues—but, actually, integration across the secondary, primary and even tertiary interfaces as well.

You've talked a lot about adults, but we haven't talked much at all about children, and we've got conditions that are increasing within the young population. So, what sorts of help and support do you see that you're being called upon and delivering more than you were before, and the ability to do it?

We do have specialist pharmacists working in paediatrics for children that have got chronic diseases or conditions that have developed at an earlier stage. I guess where it is concerning is that things that you may have seen historically in adults, like type 2 diabetes, are being seen more and more with children. I think that's a real sign that we're not getting the preventative, the healthy eating—all those basics right. So, there is a role there for pharmacy.

When we're thinking about health promotion, is that maybe where we should be starting? I know from experience that whenever people came in for stop-smoking advice, as Mabon alluded to, people normally came in because their children had been taught about the dangers of smoking at school, and I would see a real influx of people coming in because their grandchildren had told them that they're going to die if they don't stop smoking. So, actually, the impact not just on children, but on the wider family, from getting that early education is really important when it comes to healthcare. It is an area where I think we could be, as a society, doing a lot more. I know from my children's school we get opportunities to go in and share what our role is, what we do as a job, and I would love to see more of that happening at very early stages, rather than maybe waiting for when people are thinking of choosing a career—that we're actually getting in there to support with more of the health preventative messages and healthy eating and things like that.

Before I bring Chris in, did you have any other last questions, Joyce, or have you asked everything?

No, that was my last question.

I was going to say the importance of educating our children. For many years, I've been going into secondary schools doing World Kidney Day events—today is actually World Kidney Day—and have seen the impact that that has not only on their education. It helps with their sciences, it looks to potential employment opportunities within the health and care services, but it actually is a forum by which children do articulate that message to wider members of their family, and encouraging the health literacy, the health promotion, or the seriousness of managing your own chronic diseases. So, I think, yes, we should be targeting services for children themselves, but also as a conduit for health literacy across the wider society. I think it's a really targeted place to do it.

Thanks, both, for being with us. Just quickly, we'll be making some recommendations to the Government. Are there any recommendations you think we should be making, in bullet point form?

My plea would be, for someone with a chronic condition, that we give them the health and digital literacy that they need early on, so that they become empowered in their self-management, that they know how and when to access their information, what to do with it, and where to access experts in that supported self-care.

And how can that happen?

I think liberating the information that we hold on patients to them. We see that through the digital medicines transformation portfolio. But also clearly articulating to the patient in a way that they understand it. From my 17 years of understanding chronic kidney disease, there has been a lot of learning from the patients themselves. The expert patient is a good way of articulating the messages. They help design our services. If you ask people how they want to receive their care, it's very often very different from someone who is a care provider, because our worlds are very different. So, understanding the patient needs, co-producing not only the individual patient's care but the way that we design services around them, and being open to feedback from our service users. If we liberate that information in a way that they understand it, either through digital means or through paper-based means, if they have that information, they become an integral part of their care, and no decision about a patient should be made without them. Some people don't want that. Some people will look to the healthcare professionals to make decisions on their behalf. But if they're informed about that, they are genuinely part of those decisions about them—the informed decision making.

I know I said 'bullet point form' and I'm asking more question—that's my fault—but in what you just outlined, there's the implication that that's not happening now, so why is it not happening now?

I think it is happening. I think there is infrastructure that has been put in that allows us to do better. The communication about patients could be better, as the system joins up. I think what we need to not forget within that is the communication to the patients.

You've outlined a lot of what's going to be happening. Is there anything that can be done in that regard that's not currently being planned to happen?

I think we do see communication problems across the system. Things that are reliant on paper and individuals are slow, they're resource intensive. So, as we increase the efficiency by which we do that, I think there is lots of opportunity to gain momentum.

Technology and listening to the patients.

Yes, it's sort of a high-tech solution for highly personalised care. They're not mutually exclusive.

Thank you, Chris. Elen.

I'll just add to Chris's point. For me, it's embedding pharmacy teams within the wider multidisciplinary team more consistently, and ensuring job planning that enables time to train, time to train others, and also being able to work across sectors. Something that is quite a current problem, which Chris mentioned earlier, is getting ahead of medicine shortages. It is increasingly causing a problem, and for those with chronic conditions—

How can that be overcome?

We are doing a big piece of work at the Royal Pharmaceutical Society to look into all the reasons why medicine shortages are happening. I would be delighted to share the progress of that work with you as we go along, because we cannot be in the situation where pharmacy teams are spending up to two hours—

When are you expecting that to report?

We are currently working on it and, I think, within the next six months, we will have a robust piece, but we will keep you updated with that. It is causing significant pressures, and the concern is, from a patient perspective, if you are stable with a chronic condition, and you can't get access to those medicines, it's going to cause concern for the patient, as well as impact on their treatment. And I'll just add the education—it's really important that we continue to educate the public about where they can receive the care, as well as about the care that they need.

Thank you ever so much. Apologies that we've had to rush through a lot and I've had to curtail some of the discussion at some points. We'll send you the Record of Proceedings. If you think there's something we need to have more information on, then we'd welcome that. Thank you very much. Thank you for your time and input into our inquiry. Diolch yn fawr iawn.

Diolch yn fawr. Thank you, all. Lovely to see you all.

Thank you.

We'll move to item 5. We have a number of papers to note. We have correspondence from the Secretary of State for Wales regarding the draft budget. We have letters from the Royal College of Nursing regarding the introduction of the role of the registered nursing associate in Wales. We have a letter from the Llywydd for information. We have a follow-up response from Digital Health and Care Wales to our committee and the Public Accounts and Public Administration Committee regarding the committee's scrutiny of Digital Health and Care Wales. We have correspondence from the Minister for Health and Social Services, and deputies, which include the oversight of the escalation framework, the launch of the 'Putting Things Right' consultation, and follow-up evidence as well from the session on the Welsh Government's draft budget. Are we all happy to note those papers? Yes. Thank you very much.

We'll move to item 6. I propose, in accordance with Standing Order 17.42, that the committee resolves to exclude the public from the remainder of today's meeting. Are we all content? Yes, we are. That brings our public session to an end today. We will now proceed in private.