Health and Social Care Committee

Yes, of course. I'm Chris Ball, I'm ageing well programme manager with Cardiff and Vale regional partnership board. I'm the unpaid carers lead on the RPB.

I'm Suzie Becquer-Moreno. I work for Cardiff and Vale University Health Board within the patient experience team, and under my remit is the carers agenda.

I'm David Watkins. I'm the corporate carers lead for Cwm Taf Morgannwg University Health Board.

Thank you, David. There was a little bit of noise there. We'll just monitor you, David. We might need to adjust something if it continues. We'll see how it goes.

We've got several questions. I'll take the first section, if you're content to start. I really want to just focus around current context and data. It's been, as I said, a really quite intense and quite harrowing set of sessions we've had to date, taking evidence from many unpaid carers. We really were concerned about the struggles they are facing and the desperation they seem to be feeling. We've had carers in tears in our meetings, and it is extremely harrowing. Can you talk to us about your assessment of the severity of the current situation for carers across Wales? Please, don't feel you all have to speak, but if you do, you are welcome, if you could just signal. Perhaps, Chris, would you like to start?

Yes, of course. Within Cardiff and Vale, there is a recognition of the challenges for unpaid carers. We have a strong voice of unpaid carers within the partnership, and we do engage with unpaid carers. We also do make note of lots of the national information that comes out in the 'State of Caring' or the 'Track the Act' reports, or the ombudsman reports, which do a lot of that national engagement with unpaid carers. I think, as you are finding through this inquiry, there are some quite stark realities that unpaid carers are facing. I would say, in Cardiff and Vale, there is an understanding and a recognition of that fact, and a willingness and a drive to do more to engage with unpaid carers, to find out more about the challenges faced within Cardiff and Vale, and to make a difference.

Thanks. Suzie, would you like to respond?

Yes, just to echo what Chris says, really. In Cardiff and Vale, in health, we do have a very strong relationship with the RPB and our local authorities. The feedback that I get from unpaid carers, whether that be at events or carers that come into the hospital, clearly highlights the struggles that they are having in accessing health, the financial struggles that are happening at the moment. We're seeing a higher proportion of carers coming to our information centres asking for things like financial advice and support in that area. As Chris said, we are really aware of the struggles that are going on within the caring community at the moment, and are trying, where we can, to improve that experience for them when they're coming into the hospital settings.

Are you seeing those levels of burnout from people, that sheer desperation they're facing, as well as the financial issues? You're getting a feel about the ambit of pressures there, aren't you?

Yes. It's a mixture of frustration, I guess, mental well-being and physical well-being. People are starting to become a bit more concerned about those things. So yes, a whole host of reasons, really.

David will be joining us—he'll be coming back in a second. He's just sorting out some technical sound issues. If David heard the question, I'll invite him back in to perhaps give a reflection after. But I wonder if you could then tell us about the sufficiency of current data collection and the commissioning of carer support services. In your assessment, how well is unmet need currently being assessed, planned for and resourced at a national level? You'll have your own health board perspectives, and if you want to share that you can, but also from a national perspective.

I suppose, focusing on the regional, we know from the census data that there are probably around 50,000 unpaid carers in Cardiff and Vale alone. I think services can only scratch the surface of some of those 50,000 in the region—that's around 10 per cent of the population. There are services commissioned through the RPB that support unpaid carers. We've got information and advice services. Last year, they supported around 2,000 carers, but as you can see, that only scratches the surface of the whole number of carers that are out there. There is therefore that challenge around identification and recognition of people as unpaid carers, and that's often a challenge. There is also something about how services use the resources that they have, and that it's not about necessarily commissioning extra services, it's about the services that we do have recognising and being able to signpost people to the right place, so to those, for example, information and advice services.

We commission young carers support, so support that goes into schools to support young carers, because that's just as important, actually. The impact of caring on young people can be a real challenge as they go through life. We have seen that, actually, where that support is available, young carers are doing really well—so, having that one-to-one support, and also ensuring that teachers are trained to recognise and support where needed, and again ensure they can signpost people to the right place. We do commission some training and accreditation work, so again that's both for schools and for services to train and give accreditation to organisations and services to show that they are aware of carer needs. Again, that only really scratches the surface. Really, we need all services in some way shape or form to be aware of unpaid carers, not least because they may have unpaid carers in their workforce, when we're talking about 10 per cent of the population.

There's the short breaks funding, which I think has been welcomed over the last three years, and I think you've heard quite a lot about that over the various sessions. Again, over the last three years, that's supported 5,000 short breaks in Cardiff and Vale, which is positive. But again, one of the challenges locally that we're thinking about for the next three years, where the Minister has announced that that funding will continue, is how we target that to the people most at need. For some of those harrowing stories that you hear, how do we target it at those people who really, really need it? Because often, they don't know where to go to for support, and it's up to our services to recognise that and be able to provide that intervention and support and make that support available. So, yes, there are various challenges within that, and that's an insight into some of the commissioning and some of the assessment of the available support.

Can I bring Mabon in, please?

Thank you. I'm going to speak through the medium of Welsh. I'm pleased that you referred to the RPBs and that you have experience of that. I'm looking here at notes from a previous evidence session, and the evidence that we've received says that these regional boards have to have direct representatives from the unpaid carers community, but they find that they don't have these representatives on these boards, and that the charities that represent them aren't on the boards, and that unpaid carers are sometimes on these regional boards, but it's not equal, because they are discussing issues with people who have high pay, who are professionals, and they don't have time to go through all these papers. So, the evidence suggests that, even though on paper unpaid carers have some sort of representation on the regional boards, it's not working, that system's not working, and doesn't give them justice or fairness. Do you recognise that picture? Do you think it's a fair picture or claim?

Thank you. Sorry to keep speaking. To speak for Cardiff and Vale, we've actually got two unpaid carer representatives on the RPB, so people with lived experience. We also have the YMCA sitting on the RPB, who represent the needs of young people and including young carers as well, because they provide some young carer support in the region. So, they are on the board and their voice is valued and welcomed.

I've seen in some of the notes and sessions that there's a sense that those unpaid carers perhaps aren't supported or, as you say, perhaps don't feel like they're able to participate. It's actually my role to support those unpaid carers to be able to participate. I do meet them, I pre-meet them ahead of the RPB meetings to ensure that they have a briefing of the agenda of what's going to be discussed, what some of the jargon that they may hear is, but also to be there to be able to stop some of that jargon, and also to ensure that they have an understanding of the papers, even if they've not been able to or not had the opportunity to read them, because, obviously as you say, time is very precious. They are extremely valued on the Cardiff and Vale regional partnership board.

The other things that we do—. Obviously, it's a voluntary position, in a way, but their expenses are paid. That may include backfill for care and support while they're at the board, as well as a reward and recognition scheme to ensure that they feel like they have recognition for the input that they're making.

With Cardiff and Vale RPB as well, we have another board that sits underneath the RPB. Obviously, the RPB has a broad remit and their role is to input and ensure that the unpaid carer voice is heard throughout the whole agenda. But we also have an unpaid carers board that sits below the RPB structure, which solely focuses on the support for unpaid carers in the region and on developing that support and improving that support—improving the issues and hearing the voices of lived experience, and lived experiences on that board as well.

Suzie, would you like to reflect on that point?

Yes, I would just echo what Chris says, really. I sit on the unpaid carers RPB board, and have got a really good relationship with the unpaid carers who sit on that board, as well as the other organisations. I think that that network, or that group, has enabled me, and I can possibly speak for the local authorities and things, to be able to have connections and ongoing communication, then, with the other organisations that are supporting in that agenda, really.

So, it's reassuring that those people have a voice on the board. Are they being listened to? Does their input help to influence policy?

As far as the work that I do, it heavily influences. I recently put in a bid for an unpaid carers support worker, which had to go through the RPB. The carers who sat on that board influenced what that would look like. They were able to see what the job description would look like, what the kind of role and project would be, and input into that and, ultimately, be part of the decision-making process as to whether that role, they felt, would benefit. They did and it's great, and the RPB have been able to fund that role. So, yes, I do feel like it's been very collaborative.

So, they’re directly influencing the outcomes from the RPB. That's good to hear. We've got David back. Welcome, David, and thank you. Hopefully, we've sorted out those little issues. I'm not sure if you heard the first question. I don't know if you wanted to reflect on it. I was only, really, asking for your assessment, really, of the severity of the current situation with carers. We haven't moved on too far yet, so I don't know if there’s anything you want to just put in the mix for that.

Yes, I caught the first part of Chris's discussion, and I think there are a lot of carers, as we're aware, who are really struggling. We know from the 2021 census in the Cwm Taf Morgannwg footprint area, we've recorded, that 12 per cent of the population are carers, which is above the Welsh average. We've also identified that in Merthyr 5 per cent of those are caring at a really high level—more than 50 hours a week. So, we know that a lot of caring goes along with deprivation, which is one of the main factors in the higher Valleys, in our area. But, yes, we've seen from some of the evidence and we know that it's really hard for carers out there at the moment.

Yes. Thank you, David. So, in total, how well do you think regional partnership boards are serving, and meeting, you know, driving the need that is required by carers? Are you doing what you think—? Are the boards doing all they can with what they've got?

I think that there lies, perhaps, the rub: 'with what they've got’. I think there is a challenge, I would say, within the RPB and the remit that they have, in terms of how we can ensure that there is a focus on unpaid carers throughout all of the work that happens. There's a whole spectrum of policy, either directly through the RPB or indirectly, that the RPBs are supporting, whether that's discharge from hospital or whether that's more recently around building community capacity and developing an integrated community care system, various policy initiatives there that perhaps don't even mention unpaid carers in them and put pressures on individual organisations to deliver against certain targets that they may have. Now, to throw into the mix, actually, that there needs to be a focus on unpaid carers is, I think, quite challenging for organisations that are quite pressurised already and have various challenges.

I think there's a challenge for everyone to collectively consider the resources that they have in supporting unpaid carers, given how much they contribute to the economy and supporting the health and social care system. That support of 10 per cent or 12 per cent of the population providing that care—if that wasn't there, suddenly the whole health and social care system would probably fall down. Speaking for Cardiff and Vale, it is recognised, but 'with what they have' I think is limited to what they can therefore do and the additional services or support they can provide.

David or Suzie, would you like to reflect before I bring Lesley in with a question on some of this? David?

Sorry, did you say Lesley?

No, David. Sorry. David put his hand up. Just come in on that point, and then, Lesley, I'll bring you back in, okay. David, go ahead.

I think certainly within the CTM footprint that the regional partnership are listening to carers as much as they can. Unfortunately, I suppose, our area is different to other areas, whereby there's no funded post for a carers co-ordinator within the health board. The carers co-ordinator post is funded through the regional partnership. So, I think that takes up a lot of the resource and then I suppose the additional money that's is left can go towards supporting other projects directly for carers. But I think not having that continued resource has been an issue over the years since the carers Measure, I think, within CTM.

Yes. Suzie, anything to add?

Within the resources that we have, I think the RPB is listening to carers. We could always be doing more, I know, in health, but it does, unfortunately, come down to resource and capacity.

Okay, yes. Lesley, please, come on in.

Thank you, Chair. Sorry, I just wanted to go back to something that Chris said around young carers. We had an evidence session with three young carers. I haven't got my notes in front of me from that meeting, but I don't recall any of them saying that they received any support from the health board area they lived in. And I was just wondering if the work that you're doing—and I appreciate you can only say from Cardiff and the Vale—if that is replicated across Wales, do you know, by all health boards.

I don't know. I think there are areas. So, that sort of training for schools is provided by one of our third sector partners, called TuVida. I do know they do a really good job and they do get good engagement from schools in Cardiff and Vale, and that's mainly in the secondary school age, but they are trying to do some training and support in primary schools as well. But, of course, there becomes the resource question then as well. But I can't say that that—. I don't know whether that's replicated elsewhere.

Okay.

Thank you.

Right. Thanks, Lesley. Just a last couple of points from me, then. Could you give us an indication of what data is currently being collected on unpaid carers in healthcare settings and what gaps do you feel there may be? And what are the barriers to reliable data capture and enabling portability of the carers' data so it can actually go with them? Any views on that? Suzie.

I guess, for Cardiff and Vale, I think it's probably being recorded quite inconsistently. I know that we run a GP carer accreditation scheme, and, in those practices, there are read codes that GPs can use to record carers. They're not being used consistently across primary care. I know that previously, quite a long time ago, there were monetary incentives for GPs to record unpaid carers, and I know that that isn't there anymore. And then I would say that it's probably the same picture within secondary care, that there are ways to be able to record unpaid carers, but I don't think it's probably as consistent as it should be.

Thanks for that. Chris or David, would you like to come in on that at all? David, anything? Yes, come on in, David.

I think the same as Suzie. We've got the Welsh nursing care record, where carers can be recorded on the secondary care system, but that relies on staff working their way through and clicking the option and, when they're time-poor and rushing through, then often that's not done. So, I think we rely, really, on staff's individual knowledge to go and click on something, as opposed to something that would trigger all staff to record carers. And then there are so many different systems within the health board, it's really difficult to have consistent information, and I think that's across all the hospitals. We've had discussions in the ministerial advisory group around the issues with data.

I think the same as Suzie as well, with general practice. Whereas we used to have the quality operational framework, where GP surgeries were required to record and have a carers register, which was working really well—we had carers champions in GP surgeries, we had a formal qualification, we could identify carers, signpost to support— that changed to the quality assurance and improvement framework, and now it's the quality improvement framework, which is another quality operating framework, and there's no money associated with carers, so GP surgeries are no longer required to hold that register. Some still do, but some don't any more either.

I suppose the other thing is staff data. We've got 14,000 staff in our health board, and, at the moment, we've only got 121 staff recorded on the ESR, which is our electronic staff record. So, I think it's also about supporting our staff who are trying to balance work and caring as well. So, I think we still need to do a lot of work around recording our staff as carers as well.

Okay. So, data seems like a huge issue. It would be interesting—I'm not going to go into it too much now, but it would be interesting—to know what was that data like 10 years ago: are we slipping, are we improving? Clearly, I hear a lot about data, or the lack of data, or inconsistency in collecting data, in not just this inquiry, in lots of inquiries—you know, it seems to be a common theme. And in this day and age, you would have thought that we would have been red hot on data collection and analysis and things. Anyway, that's just—. I'm not putting a question there. But, Chris, would you like to reflect on that?

Yes, if I can just come in with another point on the original question, which is around the sharing of the data, I think that, again, is a real challenge. And there's some work in Cardiff and Vale just starting—it's an ember of work, really—around care plans and how care plans are shared. Because, of course, for many unpaid carers, a lot of their concern is, 'What happens to the person that I'm caring for if anything happens to me?' and actually ensuring that the cared-for person has a care plan, but not just a care plan on a piece of paper in one organisation, but a care plan that is able to be shared across organisations when needed so that people have access to that information to know that there is an unpaid carer, there is a cared-for person, and that those contingency plans are in place and can be activated at the right time, not just later down the line, when perhaps someone's ended up in hospital and the respite's not available or other challenges have happened.

Thanks for that, Chris. Can I bring Lesley in, please?

Thanks very much, Chair. I want to look at identification of carers, and we have consistently heard that many carers aren't identified as carers for many, many years, and that opportunities are missed primarily by consultants and GPs, but right across the healthcare spectrum. They then feel that they're not signposted to where they can get help. I think it's fair to say that a lot of the carers that we took evidence from had self-identified and also gone out there and tried to find support for themselves, through word of mouth and finding out what groups were available. So, I'm interested to know if you think that is a fair reflection of what goes on and what you think you can do to improve the situation with healthcare professionals so that they can help people who they recognise are carers find that support that they need.

Who'd like to start? Suzie.

If I start with primary care, then, so, within Cardiff and Vale, we do have a GP carer accreditation scheme. We understand that, actually, the earlier that we're identifying our unpaid carers the better. So, we have engaged with—. So, that scheme's been running for about 10 years now and it was developed using—. Hywel Dda kindly provided us with their investors in carers scheme that they had developed. It was about 11, 12 years ago—it was before I joined the team—that, during the carers Measure, the GP accreditation was developed, alongside health, local authorities, third sector and unpaid carers.

A set of criteria was developed for GPs to become engaged. There was a bronze and a silver level and—just a quick overview—the bronze was all about information and making sure that GP surgeries had information that was up to date and correct, so the idea would be that you could walk into any GP surgery in Cardiff and the Vale and get the same information that was up to date and relevant to you at that time. And then silver was more about GP practices really proactively looking for their carers. We know that, on the form when you register with a GP, there is a question asking, 'Are you a carer?', but, obviously, a lot of people might become carers three, four years down the line. So, it was looking at ways that they could proactively find the carers that they have in the practice, but also engaging with third sector organisations around them locally that could support.

So, we were running that scheme before the pandemic. Unfortunately, the pandemic did have a big impact. Prior to the pandemic, we had 100 per cent of the Vale GP surgeries engaged in the scheme and about 80 per cent to 85 per cent of Cardiff surgeries. We picked back up the scheme about two years ago now, as we were coming out of the pandemic, and we are probably at about a third of the GPs across Cardiff and Vale that are engaging with us in that scheme at varying levels. So, there's still a lot more work to do to get us back up to where we were, but we recognise that GP surgeries are really key in identifying.

And then, within, actually, secondary care, we have an unpaid carers information service, which is run via our information and support centres. So, in Cardiff and Vale, we have three centres that have a lot of leaflets and information for people to come and just grab freely. It's either staffed by a member of staff, or we have a lot of volunteers who help us in that arena as well. That's where we would ask staff to direct people if they identified someone as an unpaid carer. They could direct them to the information centres and we could then provide that kind of support and advice about what was in the community and just, I guess, a listening ear sometimes, just to be able to have that. But that does rely on our staff understanding who our unpaid carers are and asking the questions. So, we do have training and we've engaged with TuVida on their carer-friendly training that Chris has already mentioned. So, they are supporting some of our mental health areas. Myself and some of the team will go out and do some bespoke training for staff. We've got John's Campaign on some of the wards, which is very similar to our carers GP champion; it's about having a carers champion on the ward and having information readily available on the ward, and my and my colleagues' details are on boards, so that people can contact us. And as I've previously mentioned as well, we've now recently started a pilot in Llandough hospital with an unpaid carer support worker who actually goes up onto some of the wards and actively goes looking for the unpaid carers on those wards.

So, there is still a lot of work to be done, I think, because we're still not seeing the numbers coming through to our information centre that we know should be coming through. But, again, as David has mentioned, it is about time. It's also about people understanding that they are in a caring role. So, we've worked and we try and use different terminology, so we don't ask, 'Are you a carer?' We ask things like, 'Do you look after somebody?' More probing questions, I guess, because sometimes if you just ask somebody, 'Are you caring for this person?' I've had so many people tell me that, 'No, I'm not a carer—it's my husband', or 'It's my wife.' And until you have the conversation with them often they don't actually realise that they're in that role as well. So, I think the awareness-raising has to be on both sides, really. Sorry, I waffled on a bit, sorry. [Laughter.]

Thanks. Lesley, back to you.

No, not at all, Suzie, thank you. That's really interesting. Do you find that it's difficult with staff recognising that they should be far more aware about questions that they need to ask? You've just talked about training and about having a carers champion on each ward; I'm assuming that training is not mandatory.

It's not mandatory. I do know some other—

So, do you think it should be? Do you think that training—? We're looking at what recommendations we give to improve services for carers. Do you think that should be something that we should recommend, that healthcare staff should have to have carer awareness training?

Definitely. I think it would be really, really beneficial. I know some—. I can't remember which health board it is, but I do know one health board has managed to get the carer aware training on the mandatory induction, corporate induction. So, I think that would be really—. I don't know how David feels, but I do think that would be really beneficial for staff.

David, do you want to come in?

Yes. Previously, when the original carers Measure came out in 2010, we did have mandatory training for all staff to do the carer awareness training. Carers Trust are in the process of developing e-learning packages right the way across for secondary care, primary care, and I definitely think it should be something that all staff should partake in. And like Suzie said, it's not just about asking, 'Are you a carer?'; it's those probing questions just to find out what task they're doing. And then, hopefully, it'll sink in that they are actually caring, and it's not just something that we do, which I think is what we're finding a lot with the Valleys—it's just, 'Oh, we always look after each other', and it's just looking after a neighbour or looking after a friend.

And in regard to signposting staff, patients and carers to information, we're in the process of working with the University of South Wales and two charities in Bridgend, developing an information advice and assistance chatbot through AI. So, the chatbot, it'll take nine months to train the chatbot just on what services are available, to pick up on different languages—it's multilingual—you can talk to it, you can type to it, you can ask for information you require, but then, if it picks up you're anxious, it'll offer things like mindfulness, breathing techniques. If it picks up that you're extremely anxious, then it might say that you need to speak to your GP or ring 111 option 2 for some mental health support. But that's in the really early stages. Because we haven't got so many staff available to signpost, I suppose, or to work in projects within the hospital, then we had to develop something else. So, hopefully, the chatbot will be something that'll work and that we can roll out across the rest of Cwm Taf after we do the pilot in Bridgend.

Thanks, David. Can I just go back to Suzie, because you were talking about training in primary care, and Carers Trust Wales told us that, previously, GP practices have been incentivised to identify unpaid carers, but that that incentive has now gone. I was just wondering if you had any experience of that and whether you think, on the basis of that experience, it should be reintroduced?

From my experience, there are fewer carers being reported on the system. I guess, when we started the GP carer accreditation, that was an incentive to join that scheme, because you were registering your carers and it was giving them support. I guess we've just had to find, in Cardiff, different ways of encouraging primary care to get involved in our scheme. Things like, when the flu vaccination is coming around, it's about making sure that we're selling it—you know, if you know who your carers are, you can send out the letters to them, you can get them vaccinated. So, we're just, in Cardiff and Vale, I guess, trying to find different ways to encourage people, or encourage primary care, to engage in that scheme with us. But, again, as with everywhere, I know there are competing priorities and capacity within those areas as well.

Thanks. And you talked about primary care and secondary care, do you think there is consistency across both of those parts of the NHS? Or is this something that, again, could be done to make sure that there is parity within every healthcare setting? And I'd include pharmacies as well in that. I think pharmacies do a great deal that, sometimes, we don't recognise.

I don't think it's recorded consistently across primary or secondary care. Is that what you were asking? Sorry.

No, I was—

Sorry.

No, no, no, it's me. What do you think we should do to make sure that that information that's given to carers is far more consistent across all healthcare settings—so, not just a GP practice or primary care settings, but right across the system?

Well, I know, in Cardiff and Vale, if we've got information, we will try and disseminate that. We've got the, I guess, advantage of having our information centres, which means that we get a lot of information and we know where to get a lot of the leaflets and things from. So, we do encourage GP surgeries—not so much pharmacies; we haven't gone out to pharmacies as much, so that's something we could really look at—making sure that especially the GP practices that are on the scheme, but also we do e-mail out to all of them, have the information that we have, because we know that that information is up to date. But, yes, it could be much more consistent. And it does rely upon—. Once we've disseminated that information, is it then getting used in those areas? We can't track that. But, within the secondary care setting, we do have good relationships with some of the wards and the out-patient areas, where we actually manage their information boards or racks. So, we will take that information up to them. But, again, I wouldn't say that that's consistent across.

Chris.

Yes, I think, going back to the first point on the incentives for GPs, that's what David was describing earlier with the quality outcomes framework and the lack of that to incentivise GPs to not just get involved and recognise, but also to ensure that there's that data and the data quality is there.

I think it's a really interesting point around parity across primary care and secondary care. When we're talking about primary care, I think we need to understand that that is a huge, huge remit, and people spend, hopefully, less than 1 per cent of their life in a hospital, but they spend 99 per cent of it out in their homes and quite regularly might speak to a GP, might go to a pharmacy and might, if they're old or if they're in need of care, have regular carers going in, whether that's domiciliary care, whether that's therapies from a health perspective. It can be a whole remit, and that's a huge workforce. So, your point about mandatory training I think is important, but it's also about, then, the culture and the capacity to be having those conversations. It's all well and good training 16,000 people in Cardiff and Vale health board to understand what an unpaid carer is, it's another thing to give them the responsibility and the remit to actually have some of those conversations and to do that in a compassionate way. And that can't necessarily be trained over a 20-minute video, or however that might be done.

Actually, there's a lot more that can be done in that. And I think that the importance of that primary care and where people are, in people's homes, and building those relationships is really important because often, when people are in hospital, they're in their most vulnerable state and actually thinking about the future, thinking about unpaid carers' benefits or whatever they might need when that might be the point that their whole life is changing and the whole future is changing is really challenging and is very sensitive. Whereas, actually, out in the community, there's a real opportunity there, I think, within health and social care, I would say.

Back to you, Lesley.

Thank you.

Thank you, Lesley. We're about halfway through our session. We've quite a lot to get through now, so we'll try to be as concise as we can. Joyce.

Good morning. I'm going to ask about interventions and hospital discharge, which leads quite nicely on from where you just left off. And there is, as has been mentioned several times, the Social Services and Well-being (Wales) Act 2014, and within that it's clear that carers must be willing and able to provide the care, but we've heard that many feel that they don't have any choice. So, what are your views on that? And what needs to change?

Whoever would like to start.

Within Cardiff and Vale, those thoughts around discharge have been fed back through the work I've done with unpaid carers. We've recently had funding from our regional partnership board to be able to start a project around how we support unpaid carers through the hospital discharge process. We have a part-time member of staff now who, as I've mentioned previously, goes up—. As it is a pilot, we've allocated certain wards in Llandough. She goes up to those wards, actively finds the carers and then talks them through what they need. Sometimes, it's not around discharge, sometimes it's around information, but her, I guess, offer of support is—. We aren't able to advocate in those meetings, but she offers to meet carers before they have those discharge planning meetings, just to talk them through what they need to maybe start thinking about, what questions they maybe need to ask—I guess encouraging them to speak up if there is something that they are not happy doing, because, as you said, it isn't a given that somebody has to undertake the caring role, and then she also will then meet them post the meeting so that she can have a debrief with them just to chat through whether they've understood everything that was presented to them. If there were any issues that have been raised, we can then communicate that with the staff just to, I guess, be that liaison between the staff and the unpaid carer.

We aren't clinical, so we do advise right at the beginning that we can't overturn any clinical decisions, but we are there to make sure that the unpaid carer is as comfortable as possible with the process and as involved as they can be with that discharge process. As I said, it's really early on. She's only been in post a couple of months. But we're already seeing those conversations happening, and we're looking to evaluate at six and 12 months. So, we're hoping that that will go some way to supporting some of the issues that are being raised by carers in that sense. Is that—?

David.

Yes, I think the same as Suzie as well, really, in regard to identifying carers. It says 'upon hospital discharge', but we advocated that carers should be identified upon admission, really, so that we can get those conversations earlier, and so hopefully things won't come as a shock when the patient is discharged. We're in the process of piloting a carer's passport, which is a tool where staff can sit down with the carer once they've been identified, just to see what tasks within the hospital setting—. Firstly, if the carer wants to help with feeding or toileting or medication, hopefully this toolkit can start that conversation between the carer and staff, really, and build up a relationship, so that when it comes time for discharge you haven't got that shock, whereas we've often heard about where somebody's turned up to visit their nan and the nan's sitting in the discharge lounge and nothing's been prepared. So, hopefully, once we trial the carer's passport, the discharge date won't come as a shock and the carer can put forward any concerns or worries that they've got, and get involved with the multidisciplinary team meetings and have their view and be included in the discharge process. Like I say, it's the same as Suzie; it's still early days, but hopefully we can bear some fruit from implementing this.

We've heard evidence where people have, as you just rightly said, turned up, somebody's ready to be discharged, with no information given to the would-be carer. It strikes fear into people, because they don't want to get it wrong, in case they cause harm to a loved one, and also, they haven't got the confidence that they can do what's going to be asked of them, and they don't feel they've got any choice. So, how can we avoid that anxiety, which has the potential to cause the carer harm before they've even started? What needs to change? You've talked about a toolkit, David. That might help. You will have all experienced this situation, I have no doubt. So, how are those things overcome?

I guess, within the role that we've got, we're hoping that that communication happens, as David said, much sooner, and that those conversations are being had with the carer involved. But not only that; it's about the understanding of the conversations and of the implications of what that's going to mean once somebody is discharged, because I've had a lot of unpaid carers who will say 'yes' because they want the person out of the hospital setting. So, again, it's about just having those conversations about what the impact of that would mean, and that's what we're hoping this role will be. It will help those conversations to happen sooner, and it will help with the understanding and, as I said, that liaison, because I still have some carers who don't like to question what is being said medically or clinically, and although I've said that we're not clinical, we're trying to prepare people for those conversations, to empower them to question or to speak up and say that they don't—. Or to give them the confidence that they can say that they don't want to do things. And in situations where they don't feel they can, as I say, we can't advocate, but we will signpost to services, where we can, that have advocacy, if that is what the carer needs at that time.

What about the reverse of it? What about if the person in hospital doesn't want the carer to give the care? And there may be reasons for that, in things that have happened beforehand, where they don't feel comfortable. Is there any conversation that happens in that situation?

I would imagine there is. I probably wouldn't get involved in that side of it. That would probably be around the discharge team, and, obviously, if any concerns were brought up, I'm sure that safeguarding would be advised. But, I couldn't answer that, sorry. I'm not—

Okay. David.

The same as Suzie. I'm not clinically trained, but I sit next to the safeguarding team, and a lot of the sort of—. The team go out onto the wards, in regard to doing deprivation of liberty safeguard assessments and sort of picking up any other issues. So, we would hope that, if that was the case, then they could give their fears to staff and then they would be signposted to support. But I'm not 100 per cent sure if that would be the case.

In terms of discharging patients, we know that hospitals are overwhelmed and they need to discharge as many patients as they possibly can, and especially this time of year, where they can't even accept any patients now because of that situation. Are you finding that there's more pressure being put on people? Have you got any evidence that there's more pressure being put on individuals to care for people who probably haven't got the capacity to do that?

Not at the moment, but, as you said, we are going onto wards now and looking for the carers, whereas, previously, it was kind of asking the staff to direct the carers to us because we didn't have the capacity to go onto the wards. So, it could be that we identify that or see that more, because we're actually going up onto the wards. So, at the moment, I couldn't answer that fully, sorry.

David.

I wouldn't have an answer to that either, sorry.

Okay, that's fine.

Sorry.

No worries. Thank you. Sorry, Chris.

Not to come in with, necessarily, evidence on that, but I think you're right—there are huge pressures on hospitals to ensure that they discharge patients. And I think there is national focus from health and social care to focus on things like pathway of care delays and ensuring that those are reduced as much as possible, let alone the pressures that that has on hospital flow, which it has on ambulances, and which then has an impact on actually supporting some of the most vulnerable people out in the community.

I think my understanding is that there is a clinical responsibility to ensure that the person can be discharged safely, and that includes, if there is follow-on care, that that is able to be done safely. So, my understanding is that that is a responsibility within the hospital, and for those clinicians.

I would say that, with all of this, it goes back to my earlier point, that there needs to be a responsibility for everyone to recognise and understand the needs of unpaid carers within the whole gamut of secondary care and primary care.

Okay. Mabon.

May I come in on that last point in the discussion very quickly? What has struck me during the discussion is that we hear that health boards are expected to do things to identify, or the health service is expected to do things to identify those unpaid carers, whether that's in primary or secondary care. The RPBs are doing things to assist and to identify, and local authorities are doing things. From your experience, do you think firstly that there is duplication going on, that too many people are doing the same work and therefore that there is no co-ordination that is sufficiently effective in sharing information, and do you think these different institutions work well enough together to share that information? We heard about those new passports that Cwm Taf Morgannwg are carrying out. Is that passport and that information going to be shared with the local authorities, and are the local authorities part of that process, and is that information going to be shared? So, do you think that there is sufficient co-ordination going on here to share the information, or is there too much duplication in what's happening?

I think there is a lot of work going on in the space of supporting discharge, and it is a really important, knotty issue around health and social care working together, which is why there's a lot of focus on it and there is resource for inreach for local authorities into the hospitals to support people and ensure that people's needs are met, and perhaps some of that assessment process is started as early as possible.

I think there is still a gap in perhaps raising that understanding that someone might be an unpaid carer at the earliest point, perhaps on admission to hospital rather than just at the point of discharge where then there are challenges and there may be then further delays, which causes problems throughout the system.

In terms of duplication due to lack of data sharing, I think absolutely, in a sense, 'Do we all know who all the unpaid carers are?', and I don't think that is being shared. I think that is an area that could have significant impact nationally to say to someone who comes into hospital, 'Actually, you're an unpaid carer', and vice versa. So, I think that is a key area of challenge.

Thanks, Chris. I'm going to move us on, if I can. We've got half an hour left. Can I bring John Griffiths in, please?

Diolch, Gadeirydd. I have some questions on funding and statutory duties. Going back to hospital discharge, there's that Welsh Government £1 million fund to support carers during hospital discharge. Is there evidence that you're aware of in terms of the beneficial impact of that funding on carers?

The funding across Wales perhaps barely scratches the surface. That would be my assessment, particularly in Cardiff and Vale, in terms of focusing on unpaid carers. There was the decision locally—and this goes back a number of years, actually, this funding—to focus a lot of that funding on that training to support identification and understanding of unpaid carers. There have been various issues in the change of third sector organisation to deliver that, which has caused challenges in itself, but also then linking with the organisations to be able to provide that training. I think that barely scratches the surface, and particularly that point earlier about it not being mandatory, and therefore how do we get people engaged when people have a whole host of other responsibilities. And part of that funding is then going into supporting this post that we were talking about earlier, to support discharge, which we will evaluate and hope will have an impact. But I don't think that £1 million scratches the surface, really. That's my assessment.

Is there anything that anybody else would like to add?

As Chris mentioned, some of the funding from Cardiff and Vale has gone into the post that was started two months ago. It is a part-time post and one person. So, we are limited to what we can do. Going back, I guess, to some of the duplication, conversations were had in the RPB, and we understood that the project needed to be in Llandough, because there was a lot of work already going on in the Heath hospital, so we didn't want to duplicate that work there. Personally and anecdotally, I can already see an impact on the amount of people that we're actually reaching—carers that we're able to reach—because we're actively going to them. But, yes, as Chris said, we will be evaluating at six and 12 months.

Cadeirydd, perhaps I could just go back to Chris and Suzie, and then David, if he wants to come in, just in terms of that £1 million. Yes, it's not much money across all the health boards, and we heard from Carers Trust Wales that that sum hasn't changed for a decade and really needs to increase. If it was to be significantly increased, do you have any thoughts on what it might deliver in terms of supporting carers?

Chris, would you like to come in, or David? David, come in.

I was going to say that the funding has been the same since the Carers Strategies (Wales) Measure 2010, so there's been no amendment or increase since then. I think also the fact that, every year, a lot of the projects wait to see if it's going to be funded. Within our health board, originally the funding was for three years, and then the postholder wasn't sure whether it was going to be renewed, so they moved on. I think this has been the case: there have been four or five carers leads within the health board over the period. So, I think it's not just the money, it's the certainty of the funding as well.

Within our health board, I'm funded as part of our element of the £1 million. So, my post is funded via that fund. But if there was more money available, then we could certainly use the funding for staff to go out onto the wards to identify carers, the same as what Suzie's mentioned, just to provide that support and identification. I think that would be a really good start. So, it wouldn't just be staff identifying, we would have a purposeful role that could identify and support carers.

Back to you, John, unless, Chris, there's anything you want to add.

I'd just add that I think that that resource and capacity is needed. But, back to, perhaps, Mabon's point about we don't want to then create more layers around this discharge work, and it needs to work in conjunction with, perhaps, some of the other policies and some of the other services that are working in that area, and not end up being a discrete, 'Well this is additional money for additional teams' that may well create duplication and further challenge.

Back to you, John.

Thank you, Cadeirydd. The Social Services and Well-being (Wales) Act 2014 replaced the joint statutory duties on the health boards and the local authorities with statutory duties primarily just for the local authorities in relation to carers. Do you have any views on what has flowed from that change to statutory duties? Have there been unintended consequences? Is it a problem? Is it an issue?

Who wants to start? Suzie.

Possibly. Before that, as health, there was much more expected, I guess, of us as health, to provide and, possibly—. I can't answer that fully, sorry.

You feel there's more of an emphasis for health to be focused, whereas perhaps that isn't quite the case so much within a local authority setting.

No. Previously, I think the shift has gone more to maybe social settings than the push, I guess, for health.

I'd agree. I think you can almost see it within the teams and the support set up for unpaid carers within the local authorities compared to within the health board. That probably stems from the Act and the responsibilities under the Act, which do, as you say, fall heavily on local authorities. I think there does need to be a continued focus on health to deliver support for unpaid carers, and I think that has been potentially lost or watered down through the Act in that way; you're right.

Would that have manifested itself in the level of training within the health boards, for example, or was it more general and harder to pin down than that?

We were talking earlier about the mandatory training and whether there's mandatory training or not on a specific area. Within health, there's a whole range of different priorities, as I've mentioned a few times. I think actually ensuring that unpaid carers is a continued focus is absolutely one of the ways that that's manifested. You look at some of the reports and recommendations that have come out from Carers Wales, and a lot of those focus on the local authorities. But I'd say there needs to be a focus on health, but also on those joint responsibilities and how those bodies work together to support unpaid carers.

I think the same as Chris and Suzie, but also I think really we can—. As a health board, in regard to carers assessments, we would refer generally over to the local authority. On the wards, we can do electronic transfers of care through the e-whiteboards, a telephone call, first point of contact or e-mail. I think once that referral has been sent over to the local authority, then we're not always sure what the next steps or the outcomes are from that. I suppose as a health board, once we've referred a carer, then we don't necessarily record what additional support they need after that. So, a lot of the impetus is on the local authorities as opposed to health, I think.

Thank you.

Mabon.

Thank you, Chair. In our previous evidence sessions we've heard from unpaid carers that they struggle to prioritise their own health and well-being, and often miss appointments to see GPs or get care themselves. What changes do you think are needed within health services in order to enable unpaid carers to look after their own health and well-being better?

I'll start. I think you're right, it's a huge challenge. We've heard through our various engagements with unpaid carers that many unpaid carers say, 'Actually, I don't want care and support myself—people keep offering care and support for me, but all I want to do is ensure that the cared-for person, my loved one, is getting the care and support that they want', and that is often at the detriment of their own well-being and health.

There's a huge space there for additional support to ensure that unpaid carers can get to appointments—whether that's availability of replacement care, whether that's flexibility in appointments, whether that's some sort of liaison that can help and support people to get to appointments. I think it's a huge challenge. I think the best people to ask as to what the answers might be, might be the unpaid carers themselves as well, and finding out what their key issues are and challenges in terms of looking after their own well-being, because we can provide as much support as we want, we can make available information and advice, we can provide that information in however many formats, but actually it's about people understanding and recognising their own needs as well, and I think that's a huge, huge challenge.

I guess it comes back, a lot of that, to actually the recording of unpaid carers as well, whether that be in the GP surgery, in the hospital, because I think sometimes, as Chris has said and as you've mentioned, I've spoken to carers who are having difficulty in accessing healthcare because they're in a caring role, and I wonder whether there is something that if we are recording people as a carer, is there then that flexibility around appointments that the clinic knows that actually this person's in a caring role? I don't know how easy that would be, but it would be a start if the clinic knew that that person was in that caring role. Maybe there's some flexibility around that. I know some of the GP surgeries—previously if you registered as an unpaid carer, there was some flexibility when you were booking appointments then about when you had the appointment. I don't know if that still happens, so I think there is something around the recording and the sharing of the data, then, to say this person actually has a caring role, and it would be difficult for them to come in at 11 o'clock in the middle of the morning. So, yes, for me maybe there's something around a more consistent and a better way of collecting that information that might help.

Come in, David.

I think the same as Suzie with regard to flexible appointments at GP surgeries. Previously, when we had the original quality and outcomes framework funding for GPs, as part of the training we would offer, or they could offer, carers flexible appointments. We know they would be coming in and out quickly, so they wouldn't have time to wait, so we would have flexible appointments. And I've always used the analogy with carers that, same as an aeroplane, in case anything's happening, always put your own oxygen mask on first so you can look after others, and that's what we're trying to promote, that you need to look after yourself so you can look after your loved one.

We've been working with the intake team in the hospital because we know, if a carer's got to come in for a hospital operation, then putting care in for the patient, for the cared-for person, is really difficult, and then if that appointment gets cancelled, then it might take months to organise all that again. So, we're trying to work with the intake team so that, if appointments are cancelled, then carers' appointments can be, or operations can be, cancelled last, just because we know all the issues of reorganising. But, yes, it's just, I suppose, making sure that we recognise that carers need to look after their own health, and making sure that they know that as well.

Following up from that briefly, therefore, on the same pathway in terms of the well-being of these individuals, the carers, a number of them have told us that they suffer from mental health problems as a result of the care, especially young carers. Therefore, what do you think that we could do to ensure that these access pathways or access to services for mental health are easier, especially for young carers?

I think the programme we have around young carers and supporting young carers is important in getting in there early to ensure that young carers feel supported and feel like they have that safe space to go to, and also that peer support network, which we know can support people's well-being as well. I think the access, then, to further support, if needed, whether that be through health or other avenues—the third sector provides some mental health support as well. I think there's work to be done to clarify those pathways, support those pathways and ensure that, perhaps, as young carers and as unpaid carers, there is a prioritisation there as well. So, I think there is more to be done, but I think that getting in early and supporting schools to be able to support young carers is really important. As you say, it didn't sound like perhaps some of the young carers that you spoke to were getting that one-to-one support, and whether that would have impacted their longer term mental health support, then, as well.

Just to echo, really, that I think it is about getting in the earlier interventions so that those more, I guess, medical interventions are—so that people have got the confidence and the tools to be able to maybe look after their own well-being, mental well-being, at the earlier intervention stages. I think it's really important. And we always try in our information centres, and when we're speaking to unpaid carers, to direct them, to things like the carer's assessment and to start looking at things like the recovery college, where there's an unpaid carers course that they can go on. I know Education Programmes for Patients Cymru do sessions online that look at physical and mental well-being, sleep, anxiety and all those sort of things at the very early intervention stages. So, I think it's about really promoting well-being right at the offset, even when some people might be feeling, 'Actually I don't need that.' It's putting that little bit of information or seed in their mind that if they were starting to have sleepless nights or feeling a bit anxious, there were places that they could go for some of this early intervention.

Thank you. And finally from me, Chair, very quickly, what we also hear is the need for respite care or respite care provision for unpaid carers. What's your understanding of the situation in terms of respite care provision? Do you think it's sufficient, and can these carers access the necessary respite for them?

I think the challenge often is ensuring that the respite is targeted at the right people, ensuring those particularly most in need get the respite and support that they need. Often they don't know where to go for that. Speaking about the short breaks scheme, which we've had for three years and are lucky to have for another three years, as I said earlier, I think that just about scratches the surface of providing some sort of flexible respite. But there are a number of different respite needs that unpaid carers have that support their well-being. I'm sure you heard from unpaid carers that there isn't necessarily always the offer of respite support or the type of support that they need. I think it's about being flexible to that need and being able to have that support available. A lot of that is through the local authorities as well—access to that—which I can't talk to you that much about.

Thank you, Mabon. We've only got five minutes left, and I would like to bring James in, please, to ask the last couple of questions.

Diolch, Cadeirydd. Thank you. My questions are very short, Chair, so you'll be pleased to know that. We've heard a lot of evidence from you today, so basically some parting thoughts from you about what action you think is needed at a national level to improve access support for carers, and what role should the health boards play alongside our local government partners? Are there any practical solutions that you think could be implemented quickly to help the caring sector across Wales? I don't mind who starts. I'll start with David because he's online with me.

I think an easy win would be if we could put the carers agenda back in the primary care surgeries, if we could identify carers as early as possible, because for a large majority of carers, that's their first point of contact, so I think that would be a great start. I think a bit of continuity in regard to funding, as opposed to some services waiting until March to know whether they're going to be funded the year after—. I think that has a knock-on issue with some health board staff—that they're reticent to refer patients to services because they're not sure whether they're still running. So, I think that if there was that continuity in funding, then at least we would know that staff would be able to refer over on a regular basis and they'd be confident that that service is still running.

Okay. Colleagues in the room.

So, for me, I guess, within Cardiff and Vale—I know we've talked about capacity a lot, but I think there are lots of little pockets of projects and good work that are going on that to scale them up would need investment and bigger capacity for the teams that are doing them. But I think, where they're evaluated and they're seen as good practice and a good way of working, and that they are supported in big areas, it'd be great if we could scale some of those projects up.

I think there are various ones, and I think they've been picked up throughout the session. I think a quick win would be around focusing on the data, and the development of data, around unpaid carers, so that we really understand unpaid carers in our communities. I think there's something around national messaging and awareness raising that can be done on a national scale. I think, again, there are pockets of that, whether it's through leaflets, posters or whatever it might be, but, actually, can we do something on a national scale? I think you've probably got the sway to be able to influence that in some way.

I think there's something around ensuring that the unpaid carers agenda is reflected across policies, not just in individual policy. Don't create a single thing that's meant to be a silver bullet; that's not going to work, is it, as we've discussed. I think it needs to be reflected across different policies that are put out.

With any solution, it needs to strongly have the voice of unpaid carers. As you heard earlier, I think, lots of the RPBs do have the voice of unpaid carers, but I think unpaid carers need to feel like they have a voice in the solution. So, whilst I know that the committee has heard from unpaid carers, I think it's really important that that continues and, perhaps, that co-production of solutions.

Finally, I think there's something around the strength of the partnerships, and using those partnership spaces to develop the solutions and to implement solutions, but they also need to hold people to account.

Lovely. I've rolled all of my questions into one there, Cadeirydd. I think we can make some recommendations out of those, so I’m finished. Thank you.

Thank you, James, and thank you for those last points—really very helpful as well. That brings us to the end of the session. Can I thank you so much for sticking with us? We’ve obviously got a lot of things that we need to understand, so we'll be speaking with the Minister next week and, obviously, forming some recommendations as a result. There will be a transcript available for this meeting, which you'll be able to check over, and you can inform us if there's something that we've got wrong or that has been recorded incorrectly. Can I just thank you once again for making the time? We appreciate all that you do.