Health and Social Care Committee

Welcome back to the Health and Social Care Committee. We move to item 3 and we continue our scrutiny of the Health and Social Care (Wales) Bill. We have a panel with us this morning in order to continue the discussion around the introduction of direct payments for continuing NHS healthcare. I'd be grateful if the panel could introduce themselves for the public record. I'll start on my left.

Good morning. My name is Samantha Williams and I'm the policy and communications manager at Learning Disability Wales.

Good morning. My name is Jake Smith, I'm the senior policy and public affairs officer at Carers Wales.

Good morning, I'm Kat Watkins. I'm the project development officer at Disability Wales.

Thank you all for being with us this morning. If I can ask a very general opening question. I'm asking for just a brief overview of your thoughts on the provisions within the Bill—fairly brief, but just an overall position from you. Who would like to address that point first?

Can I just clarify, are we only talking about the direct payments aspect of the Bill and not the removal of profit from children's care services?

You're quite right. In this session, we're particularly interested in the direct payments.

That's fine. I'll start, then. People with a learning disability often feel that they don't have enough choice and control in their lives, so the option to have a direct payment we see as a positive, and that people should have more control over their medical treatment as well, and that this is a good step forward. However, we obviously have some concerns about how that would be implemented and the possible administrative burden that might be placed on people and their families of having a direct payment, and whether or not that's going to be a viable choice for people and whether there's going to be real choice. That's our main overview.

We certainly support the overall objective to introduce direct payments for continuing healthcare. We are, of course, a charity for unpaid carers—all of those hundreds of thousands of people caring for their loved ones all across Wales. And although the unpaid carer themselves might not be receiving direct payments through continuing healthcare, because it's not their primary health need that has resulted in the package, we very much still believe that these provisions matter immensely for unpaid carers, because the type of community healthcare that their loved one receives and the level of support given have a big impact on the level of care that their family members and unpaid carers have to provide. And also, many unpaid carers will have a role in applying for, administering and maybe managing direct payments with, or on behalf of, their loved one who they care for. But fundamentally, I think the option to have direct payments for continuing healthcare is an extra option that people can take up if they wish, and if they don't, they don't need to. And there's absolutely potential that it will increase choice and control within continuing healthcare. So, I think it's an extra option that unpaid carers will definitely welcome.

And Kat, the same question, but I'm going to just open it up a little bit more as well and ask you whether you think the provisions within the Bill, and what the Bill sets out, will have the desired outcome that you would like to see.

As Disability Wales, we are very welcoming of this. It's something that we've been fighting for for a very long time. And on a personal note, I am also very welcoming of this, as I have recently moved to continuing healthcare myself. Having the voice and control is very important to me. And obviously, it's bringing it into line with social services direct payments as well, which is a good thing, because at the minute, we've got a two-tier wall between disabled people and people with long-term health conditions, who either can have control over their care or can't, and that is not something that we want in Wales at all. Can you repeat the second part of your question?

The second part was just asking, in terms of what's in the Bill, the provisions in the Bill, do you think as it's set out now that's going to have the desired outcomes that you want to see.

I think that it will have the desired outcomes. There will be issues, like teething problems; there are always teething problems with whatever gets established. But I think that working with these and keeping on the line of implementing this is the way forward, and not to get sidetracked by anything that goes wrong, because it is what disabled people and people with long-term health conditions need and desire. I know for a fact myself that I've been fighting for it for a long time, working with the working groups and things like that, and so have Disability Wales.

Do you feel happy, Kat, just talking a little bit about your situation, then, if you're somebody who is battling the system yourself? Do you want to just expand on that a bit more?

My situation is a little bit different, because I wasn't willing to give up the voice and control that I previously had on social services direct payments. I was not willing to give that up at all, so I made a deal with the local health board and social services and asked them to pay social services, so that I could keep direct payments and maintain my level of independence, because I just could not give that up, because no-one gets to tell me what to do. I wasn't going to allow that.

No-one's going to tell you what to do, so you're strong yourself to progress that point with the local authority, but of course, others that you advocate for don't have that strong voice that you do. So, perhaps expand a bit on some of those who you're advocating for and their situations.

For those that don't have the voice, it's important that we as Disability Wales fight for that voice and maintain what they can have, because it's so important that, for human rights, they have that independent living. They may have complex health needs, but they still have rights as human beings to have an independent life and work within their own remit.

I know that myself, I will keep shouting from the rooftops and trying to advocate for them as much as I can, and I know that Disability Wales as well will keep harping on about that. But this Bill seems to set out that there's a will to do that, and in two years, hopefully, everyone who is currently on continuing healthcare, who has been told in the past that they need continuing healthcare but have refused it, and those that are found to be needing continuing healthcare, will be able to have a life that they choose to have.

Thank you, Kat. Samantha or Jake, in terms of your organisations' roles in advocating for others, are there any examples when it comes to supporting people with direct payments that you can talk to us about, to help, perhaps, with the following questions that might come forward?

For people with a learning disability, what we are concerned about is that we don't want people to end up almost having no other option than going down the direct payments route because they feel that's the only way that they're going to get adequate care. It shouldn't be the only option if you want to have any sort of choice and control, even if they don't want to go down the direct payments route, because it can be quite a considerable administrative burden for people and their families. There are whole issues around the support and advice that's available to people when they go on to direct payments, because then they become an employer and all the other responsibilities that come with that, and that can be a big concern and it does put a lot of people off, currently, having direct payments. We would like to see more people with a learning disability receiving direct payments, but only under the right circumstances and if they get the right support to do that.

Also, there are risks there about health and safety and how that is carried out, both for the individual to make sure that the person receiving care and support is safe, but also the employees, the care staff. We have heard, anecdotally, currently, that there are some issues where an organisation would do a risk assessment and say that, 'For manual handling for this individual, it requires two-to-one support', but sometimes someone on direct payments is saying, 'Oh, no, I only need one person for this' and then there's the potential risk there, then, involved in, 'Is that really adequate?' and 'How is that being assessed?', and whether we're making sure that that is a safe environment and that all those health and safety regulations that exist within health and social care—that, when someone is paying for that themselves, they're still getting that same level of health and safety requirement. So, there are issues there as well. But I think the main thing is that people should still have choice, voice and control whatever option, it shouldn't be—. People shouldn't feel like, 'My only option is going down the direct payments route, because otherwise', as Kat says, 'I'm going to have no control over my care.' And I think that's the important thing. And given that we know about the chronic underfunding of health and social care, it needs to be ring-fenced, that people still get the care that they need, whichever option they choose.

Thank you, Sam. Jake, I might just ask you to hold fire, because in the next set of questions, perhaps there'll be some opportunity for you to draw out some examples in that as well. Mark Drakeford.

Thank you, Chair, and thank you to you all, for the support you've expressed this morning for the principle of providing a choice for people who qualify for continuing healthcare to discharge that through direct payments.

Three practical questions, then. If this is a new right, what needs to be done to make sure that people know about it? When people know about it and choose to take on direct payments, what have we learnt from the experience of local authorities that would allow us to make that choice easier to exercise, less complicated, less burdensome? Are there ways in which we can make that right, just more practically effective? And then, thirdly, reflecting on some views we heard earlier this morning, do you believe that the Bill should contain a right to return? Because we were being told that some people may hesitate to opt for direct payments for continuing healthcare if they don't believe that they have a safety net if that doesn't work out and that they can't return to direct payments from the local authority and continuing healthcare directly provided by the NHS; they won't take the risk if they don't know they can go back to the system that they'd become used to. So, just your views on those three practical points.

We may not have time for everyone to answer, so don't feel obliged to answer every question that Members ask, but is there somebody who particularly wants to address that point? There we are, Jake.

Thank you. Taking the second point on local authorities, we know, from speaking to unpaid carers who have experience of the current direct payment system, that there is confusion and ambiguity about what direct payments can be spent on, and, unfortunately, we have a variable picture across the country, with local authorities providing different levels of guidance, information and advice to people about what direct payments can be spent on, and this leads to—. For example, there was a carer who told us that they couldn't understand why they couldn't use some of the direct payments to transport their loved one to a day centre, for example, and for them it seemed perfectly logical that that was a legitimate use of the money. Audit Wales, in 2022, did a report into direct payments in adult social care, and they found that there was a need for greater clarity in terms of what things can be spent on, but as well as having that clarity, clearly there needs to be, I think, an appropriate level of flexibility in terms of what it can be spent on, because unpaid carers tell us that when they think there's something direct payments really should be able to be spent on, and then they can't spend it on that, it doesn't make sense.

The promotion issue is something that absolutely needs to be improved. Unfortunately, looking at the current system for direct payments, we know that many people aren't aware of direct payments. How it could be improved is, of course at least from our perspective, that direct payments and the availability of them for continuing healthcare need to be integrated into unpaid carer-focused communications. So, local authorities have a duty under the Social Services and Well-being (Wales) Act 2014 to be providing information, advice and assistance to unpaid carers—it should be integrated into that offering. It should be mentioned in carers' needs assessments—so, when unpaid carers are having their needs assessed by the local authority, again, when they're speaking to that social worker, for example, you're taking that opportunity to promote direct payments and their availability within continuing healthcare. Linking up with the third sector has a role to play in this, so, of course, charities, but also carer centres, recognising that people receive information from a variety of different sources, not just from statutory sources.

And just finally, on the right of return, it's not something we've considered in detail, but I think it's something we probably would be supportive of, because there's a question about people starting their CHC journey, and how we're promoting and explaining direct payments to them, but it's really important to know that, because there are reviews baked into continuing healthcare, you might have a situation where someone receives continuing healthcare for a period of time, and then their need is assessed as no longer being primarily a health need, and then they might actually be moved back to local authority. So, we need to make sure that that transition into continuing healthcare, but also potentially out of continuing healthcare, is as seamless as possible, because unpaid carers and, of course, families and people with that health need, don't need that extra level of stress and burden.

Any other questions, Mark?

No, thank you.

No. Anybody else want to come in on Mark's question? Don't feel you—. Sam.

Just on the right of return, I think it's very, very important. One of the things that's happened in the past is that some people have felt forced going into continuing healthcare without any choice, and have found that quite difficult, because they weren't made aware of how much it would change their existing care package. It does depend on the health board area and the region, but in some areas, everything changes almost overnight—the staff that they've got used to; the whole package changes overnight, and that can be very, very distressing for people. The option of direct payments as well can sometimes be very scary for people, and so I think that safety net of knowing that they can go back if they don't feel that it works out for them, particularly when, say, sometimes, as Jake said, the administrative burden does fall on carers. Particularly people with a learning disability often live with elderly parents and, as they get older, obviously that burden becomes more. They might get to a point where they no longer feel that they can deal with everything that's involved in a direct payment, so I think having that option and that right to return to a previous care package I think is really, really important.

Thank you, Sam. John Griffiths.

Diolch yn fawr, Cadeirydd. Thank you, all, for coming in to give evidence to committee today. In addition to what you've already said, what would you see as the main potential barriers to implementing these direct payment provisions successfully? What would you like to highlight as possible problems?

Possibly the elephant in the room is sufficient, suitably qualified staff. We've got a social care workforce crisis. We've got a lack of suitably trained healthcare staff, particularly for people with a learning disability. Often, the people who end up needing continuing healthcare are people who have additional behavioural needs. And there is a real lack of suitably trained healthcare staff, who are fully trained, for example, in positive behavioural support, and are able to support those people. So, the option, then, of going down the direct payments route and of having to source suitably trained staff yourself I think is going to be quite challenging for lots of people. And I would be concerned about how that need is met and how people are being supported, then, and are they going to get the right level of care when they're not actually—. They have to do it themselves, and find those staff and have to make sure that they're trained to a certain level, and it's whether that direct payment will be enough to pay staff at the correct level with the correct level of training.

Thanks very much.

Thanks. Kat, I think you wanted to come in.

I think that, for many disabled people who are coming from social services direct payments, they will bring with them a team of carers that already know their needs. They've probably already got health needs, but they'll have this team already, which is incredibly important because it takes a very long time to train somebody up to what you need, and trying to find somebody that's compatible with your personality or will do those little extra things that you're asking is very difficult. If that continuity can be established, where they can just go from direct payments from social services to direct payments continuing healthcare, taking that team with them, that can only be a good thing, because they're not going to need to source extra people, potentially taking nurses out of the hospitals, because they are the most qualified to undertake these nursing needs as well.

So, a disabled person has to have the team that they are most comfortable with and that have already learned to live with them, because we're talking about people who potentially will be living in their house with them 24/7, and it's so difficult having that, because when you don't like that person, that does not make a happy atmosphere at all. When somebody is potentially having anxiety from having the change already, being able to keep that continuity is a must.

Yes. Jake.

Thank you. There's something here around the sufficiency of pay rates that can be delivered through direct payments. We know that the hourly rate offered through direct payments, which people can use to employ personal assistants, varies across Wales, and we know from some unpaid carers their worry when they see that it appears to them that the pay rate isn't sufficient to procure staff. One unpaid carer told us about their worry when they saw that the hourly rate they had been provided by the local authority fell some way short of the hourly rate required by local agencies and such, and then the carer was faced with having to top up that hourly rate from their own pocket, which of course many people can't afford to do, and no-one should have to do, anyway.

Of course, these pay rates—the way in which they're set needs to be scrutinisable. I think local authorities should have to set out why they have set that pay rate for that area, and if service users and carers don't believe that pay rate is sufficient, there should be a mechanism to review that and challenge it so it can be updated if it isn't accurately reflecting the local workforce. And the second point I'll make on this is I don't think we can underestimate, actually, the reluctance and, in some cases, fear people might have from changing their care package and potentially taking up continuing healthcare, even with direct payments. The independent evaluation of the Social Services and Well-being (Wales) Act 2014, which was published last year, found that among service users and carers, there was a widespread feeling of frustration and of having to fight the system for what little they get within that very difficult context. So, when service users and carers maybe have to try really hard and maybe push and badger for a long time to get a package of care that meets their needs, then there will always be that reluctance about upending that and moving to a different package of care. Unfortunately, we're not in a system where people are confident and optimistic about changing their care package and moving to a different provider, with that level of upheaval. So, that reluctance might mean that people are less likely to take up the offer of moving to CHC, even with direct payments.

If I might continue, Chair, the Welsh Government itself in its consultation identified potential issues with the lack of social care staff, and that not then allowing the take-up of direct payments because of the difficulty in identifying somebody that's going to provide that service. And there's an issue there as well in terms of families, and perhaps those families feeling pressured to take on direct payments because there isn't that alternative, and family members then possibly becoming the carer or personal assistant when that's not the best option—it's because of the lack of alternatives, rather than choice. I know those are issues that you recognise from your evidence. How significant are they, do you think?

I think that's a real concern. As I said, the lack of suitable care staff both in social care and in health is a big issue, and then people ending up, as I said, almost having no other option than going down the direct payments route because they can't get the care they need, and still then struggling to get that. I think there needs to be really good support in place if things go wrong with the services that people are buying. If people are on direct payments, there needs to be support there.

We mentioned this in our consultation response: measures need to be there as well to make sure that predatory profit providers are not taking advantage of people who are on direct payments, and promising the world and not delivering. What happens for people when they've got a direct payment and they're paying a particular care provider, and suddenly something happens to that care provider—it goes bust, or whatever? What happens then? What's the alternative? Is there any safety net?

I think there's a lot there, and, actually, going back to Mark Drakeford's point about awareness and learning from social care, I think we need experts in every local authority and every health board around direct payments, because at the moment what we hear, when families ask about direct payments to their social worker or whoever, is, 'Oh, I don't really know enough about that'.

I think there's a lack of knowledge there, and I think there needs to be that expertise in every area, where if someone or a family is considering direct payments, that they can go to and get that really good quality advice and knowledge, rather than often people almost going into it blind. They don't know what they're getting into because there just isn't that expertise, and they're fobbed off whenever they ask anyone: 'Oh no, I don't do direct payments, I don't know enough about that'. I think sometimes people are very put off by that.

I think that really needs to change. There needs to be that expertise, whether it's ambassadors or whatever, champions—that there is somebody within each local authority area and each regional health board area where people can go to get really good quality advice and support before they make that step, and also during. So, if they're struggling, if things go wrong, there still needs to be that advice and support available to people.

Thanks very much.

Thank you. Mabon ap Gwynfor.

Thank you very much. I will be asking through the medium of Welsh. I'll touch on the discussion we've just had about the workforce. There have been concerns raised that there aren't enough personal assistants available, enough people who are willing to undertake that work, and perhaps the terms and conditions for personal assistants aren't good enough. What are your feelings about that, in terms of the numbers we currently have, and whether the terms and conditions are sufficient?

This is obviously a major problem in Wales, but in the UK as a whole, and it all stems from Brexit and the lack of ability to bring in carers, potentially, from outside the UK, who plug the gap to the shortfall within the UK. We are now feeling the repercussions of this quite badly. It's incredibly difficult to find a personal assistant that you get on with. As I've stated before, you need somebody that you can live with 24/7. I think this also brings into play the need for a national independent living centre, so that there's more advice and advocacy and sharing of resources, so that people can look at what's available, who's available, and can have that ability to say, 'I don't have a personal assistant, you do, I get on with them, do you mind if we share, or if they come and work with me, and you can find somebody else?' But having this national independent living centre would help to establish a bigger and better care force, because the whole pool would be together, and people would tap into that pool, and everyone would be able to offer their own expertise. Because a lot of the time, it's only when talking to peers that you find out the correct information. Because nobody in a local authority will say what the direct payment is, how it works; you need that lived experience to be able to really understand it. And the only way you're going to be able to share that lived experience is through something like a national independent living centre, so that you can have the ability to share with everybody.

Can I cover the terms and conditions point? I think that is a big, big problem. It's the same for the social care workforce, where, unfortunately, we don't value social care and personal assistants and the level of responsibility involved in that, unfortunately. And that's not reflected in the salaries that are paid. I think COVID really shone a light on that, and it's worsened, deepened the crisis within the social care workforce. Because you can get more money, quite frankly, picking vegetables, never mind working—. I was going to say working for Amazon, but, actually, you can get far more money doing jobs with far less responsibility, where you go home at the end of the day and you don't have to think about it. Working as a PA is an incredibly dedicated role, which requires a lot of responsibility and an investment, and takes a lot out of you as a person, and yet the pay just does not reflect that. So, you almost have to ask, 'Why would someone want to be a PA or a social care support worker, given how little they are valued?', and I think that is a big problem. We recognise it, we know that we need to do something to increase the social care workforce, but unless we start really valuing that role, we are just going to keep seeing people leaving the care system in droves, because we just don't value it, I don't think, and society doesn't value it enough either.

I see Jake might want to come in, but before Jake comes in, on the points that both of you have made, we've got a proposed Bill in front of us, is there anywhere or any way you think we could look at that issue of improved terms and conditions, improved pay, within this proposed Bill? Is there something we could work on?

I think we need to match up the social care workforce with health. I'm not saying that health get paid enough either, but there is a disparity, often, for very similar roles. If you're a support worker working in social care, you get paid less, generally, than someone working in health doing virtually the same role. And also, you don't necessarily get the equivalent level of training or recognition or opportunity for career progression. So, if we at least did that, if we started aligning the social care workforce and terms and conditions with healthcare, that would be a start.

I think this issue is incredibly important, because, unfortunately, the context we're in does suppress demand for direct payments, because we hear from families, 'What's the point in having a direct payment, because there aren't the services out there for me to buy through the direct payment?' You can only spend on services that are actually out there.

Maybe I'd also bring it back to the earlier point I made around the sufficiency of pay rates through direct payments, because we wouldn't want there to be any situations where there are care workers and personal assistants out there in the community but the direct payments the person has been given aren't actually sufficient to buy in that service. So, we do need to make sure that pay rates are sufficient, that they're fairly set, they're publicly scrutinisable and accountable. And maybe that's something that's closest within the scope of this Bill.

If I could go to one further point, you will, of course, have read the explanatory memorandum for the Bill, and it suggests that alternative models of care would reduce the strain on the care workforce. But there are concerns from stakeholders that the opposite may be true and that it wouldn't reduce the strain—that it could cause labour market displacement and further instability, with social care workers, for example, moving to work as personal assistants. Do you think that's a risk, or do you agree with the explanatory memorandum?

If I could just ask, perhaps, one of you to respond to that point, just for time. Who would like to address that? Would anyone in particular like to address that point?

I just want to say we have heard examples, even currently, where some support staff who work for an organisation, for example, can get paid more if they go and do a few hours where they get paid from someone who gets direct payments, than doing extra hours in their existing role. So, I think there is potential for that. Again, it varies widely. As Jake mentioned, sometimes direct payments don't have enough to pay someone; they're paying less. But sometimes, they can end up paying more, because they're not paying all the other outgoings. And because there's so much variance within social care about pay rates, I think there is a potential for some staff to actually find it more lucrative, maybe, to go freelance and get paid as a PA or as support staff for someone who's receiving direct payments. So, there is potential for that there. But, as I say, I think we need to sort out the issues around social care staff anyway and the workforce and upping rates for everybody so that we're not having this, we're not losing social care staff, wherever it may be.

Diolch.

Thank you, Mabon. Altaf Hussain.

Thank you very much, Chair. Thanks. I'll be talking about CHC. What do you hear from the disabled people and carers about how well CHC is working for those who need it? I know that demand is going—. It is predicated that it will increase. Are they well placed to look after that? And do you think it needs any system change?

Jake.

Thank you. One issue we picked up around continuing healthcare is service users and carers feeling like they're passed between local authority social services and health through continuing healthcare and, often, disagreements, sometimes, between councils and health boards about where the need primarily sits. One unpaid carer who spoke to us said that the person they look after was initially receiving a local authority care package, but then the local authority said, 'We think you would be better looked after by health.' So, they went and had a CHC assessment, and they were declined for that—health disagreed. Then the unpaid carer made their case again, and eventually health relented. But now they worry that, actually, they might be moved back to social services. So, there are negative experiences, unfortunately, with the assessment process, and especially when people feel they're being moved between the different realms. Often, it feels to people, of course, that it's actually arguments over budgets, really, and the council doesn't want to pay for it, so they'd rather push it to the health board, and maybe vice versa.

But, of course, it's families that are stuck in the middle of this, and people can't understand, when, at the end of the day, it's all public sector money, it's all taxpayer money, why there isn't a greater provision of pooled budgets and shared budgets because it does feel to some people like, in some cases, it's organisations seeking to move people into different budget areas and such. So, people can have a very difficult experience if they feel they're being moved between the two, and it can be a very frustrating experience.

You had raised it very well with the Welsh Government in the consultation. How can we rectify it?

So, I think people need to—. I think staff communication is a really important point, because people, when they engage with the CHC process, for example, they're led through that process by the care co-ordinator, who will guide them through the application process and then the management of continuing healthcare. And that care co-ordinator, I think, needs to be well trained to understand—well trained in, of course, disability awareness, but also carer awareness, and well trained in direct payments, so they're able to pick up on needs, on nuances and they're able to properly explain these decisions.

But I think there's also something for Welsh Government, and maybe there's a role here, actually, for regional partnership boards, in terms of linking up some of these decisions and budgets behind the scenes, because, again, you don't want people being seemingly passed between local authorities and local health boards, that worry that, actually, it may be budget considerations leading this. So, rightly, Welsh Government is pushing for more integration in health and social care, so how can we embed that principle here and actually have that more collegiate, joined-up approach between local authorities and local health boards?

Thank you.

I just want to reiterate the thing about pooled budgets. When the social services and well-being Act was coming in, there was provision in there. It was talked about. I sat in so many meetings and consultations about pooled budgets, and we're still not there. And people end up stuck in the middle, sometimes not receiving any service while social services and health boards fight it out about who's supposed to pay for it. And the individuals are left stuck, and they don't understand why this is happening. It's irrelevant to them which budget it's coming out of; they need care and support, and they shouldn't have to have this wrangling between—. And some people end up feeling quite pushed into going down to continuing healthcare, and they're sold it on the, 'Oh, well, you won't have to contribute anything, it's all free, it's great', without it really being fully explained to them about how it might change their care package and what the implications of that are. And it does often feel like it's very budget driven and one public body trying to move people on to someone else's budget. So, I think pooled budgets would be a good option.

Altaf, have you asked all your questions? You have. Joyce, if you want to come in on this, and then come on to your set of questions. Thank you.

Just keeping on pooled budgets, have you come across any examples of best practice anywhere, where that is operating?

I'm just going to hand over to Kat, because the—

Kat. They're looking at you, Kat. [Laughter.]

No, I'm afraid I don't.

Okay, I just wanted to—. Because it has been mentioned so often, the obvious question was: is it working anywhere? And you haven't come across it, so—.

We've had—. So, I'm moving on now to demand and supply, really. We've had evidence that's been given to us that the expectation is a maximum of five people per local authority per year are likely to move across, therefore making a total of 110 people. Do you support that thinking?

To be honest, I actually think that's quite low myself, because there are a lot of people that have been on the cusp of needing CHC, but, because of the lack of voice and control, have refused it. So, there are many that are going to see that it's now a direct payment, and be like, 'Oh, I can finally take it up and have all my health needs met while retaining my independent lifestyle.' So, I do think that five people per LA is quite low myself. I could be wrong, but I don't think I am.

Does anybody else have any opinions on this, any research? No. We're looking at—and you've mentioned some—the unintended consequences of it, and they've been expressed well this morning. But, apart from the ones you've already mentioned, are there any others you would like to mention?

Jake.

One unintended consequence I'd like to raise is around where unpaid carers can have their support needs met and the awareness of that. So, of course, under the social services and well-being Act, unpaid carers have a legal right to have their needs for support assessed by the local authority. And although carers have a stand-alone right to have their own carers needs assessment in their own right and just for them sometimes it is done as an add-on and combined with an assessment of the needs of the person they look after. Now, if the person with the care needs, the health needs, if they are now under continuing healthcare, and no longer under the local authority, it's still really important that unpaid carers are aware that they still have that stand-alone right to have their needs assessed and their eligible needs met by the local authority, even if their loved one has moved from local authority social services into the realms of the NHS and continuing healthcare. And, unfortunately, I would have concerns around this, because we know from a lot of research Carers Wales has conducted that many unpaid carers aren't aware of their right to a carers needs assessment. We know from the independent evaluation of the social services and well-being Act that there is that gap between the laudable aspirations of the legislation and the reality on the ground. So, I would have concerns that unpaid carers might think, now that their loved one is receiving a CHC package, that the carer can no longer go to the local authority, but they absolutely still have that stand-alone right, so, I hope we can mitigate that unintended consequence and make sure people are still aware of that.

Thank you. We've talked about what's in the Bill. Do you want to add anything that you think should be in the Bill that isn't in the Bill or even have a greater focus within the Bill?

I think the positive aspect of a disabled person being given their independence, because there are many out there who have to rely on their family for their care, as Jake said. But there are also many who just don't get on with their family and they're being pushed into that position because they have care needs. And nobody wants to be with people they just don't want to be with. So, I really think that this needs to be highlighted, that there will be a lot more independence for those who currently don't have as much as they would like, and I really, really do feel quite passionately that that needs to be highlighted.

Thank you. Thank you, Kat. And finally, we're talking about what's on the face of the Bill and we're talking about the rights and we particularly want to get your views on whether the UN Convention on the Rights of Persons with Disabilities should be on the face of the Bill. We've seen the UN Convention on the Rights of the Child and the UN Convention on the Rights of Older Persons being on other Bills. So, I just really want to understand your thoughts on that.

Can I go first? So, my previous role at Disability Wales was the UN Convention on the Rights of Persons with Disabilities development officer. So, I'm very passionate about the UNCRPD. And it absolutely needs to be part of the Bill, because there are so many articles within it for independent living and the right to healthcare and things like that that it has to be integrated. And as it currently isn't, and there is no mention of it throughout the Bill, that's not really great in my eyes. And I've been part of the working groups and I did highlight how important the UNCRPD was to giving disabled people their human rights as well.

Is that echoed?

Disabled people and disabled people's organisations have been calling for this in Wales for some years now. As you mentioned, legislation in Wales that relates to children is always related to the UN convention on children's rights and we believe that it should be the same for any legislation that affects the lives of disabled people—that the UN convention should be mentioned.

Do you think it should be mentioned or do you think it should be on the face of the Bill? I think that was the question.

Yes, it should be on the face of the Bill.

Mark.

Isn't this just gesture politics? The Welsh Government is already committed to the UN Convention on the Rights of People with Disabilities. It's stated it many times in many documents. What is the point of just repeating something to which the Government is already committed?

But why has it always been a commitment for children's policy? If that's the case, why bother doing it for children's policy? I just think that it has been a commitment within that for many years and I think, even if it is just about optics, it's about the way it looks to people and to the rest of the world, that Welsh Government is committed to the UN convention, and, by putting it in the legislation, I just think it concretes that commitment.

Mabon.

Along the same lines, my wife works with a charity for young people and children as an advocate, and it’s expected that local authorities provide advocacy for young people. Do you think that same expectation should be for disabled people within this Bill—that we should look at ensuring that it’s legislated that there should be an advocacy service provided? Jake.

Thank you. I think there is a role to play for advocacy and a very useful one in terms of supporting service users and their families through the process of applying for continuing healthcare and setting it up and mediating that sometimes difficult process that we’ve spoken about. We know, unfortunately, that many people find it quite difficult to access advocacy services, but, of course, it can make a world of difference to people, and it really helps people to engage with the myriad of organisations, the official processes. And actually—we spoke a few minutes ago about those disagreements and transitions between local authorities and health, and the back and forth there can be—I wonder whether there is actually a role for Llais, which, of course, seeks to join up health and social care, and also has a role in promoting advocacy. So, maybe Llais has a role here to play in helping people navigate the CHC process and also mediating and supporting in those discussions between local authorities and health boards.

Advocacy is hugely important, particularly for people with a learning disability, as many, for various reasons, are unable sometimes to advocate for themselves. But, unfortunately, there is a real lack of specialist advocacy in Wales and, unfortunately, no-one is prepared to fund it, particularly local authorities. And what often happens is, in any areas, that people are only offered generic advocacy services, and people with a learning disability need specialist advocacy services. They need advocates who know how to work with people with a learning disability who may have communication needs, and also who understand whatever it is that they’re advocating around—so, whether it’s continuing healthcare, and I see it a lot for parents with a learning disability in children’s services. They are not offered an advocate who knows anything about the care system or about working with a parent with a learning disability, and it will be the same for this. So, yes, advocacy is really, really important, but someone has to commit to funding it and, at the moment, nobody is.

How well has the Government engaged with you in terms of developing the Bill?

The first that I heard of it was a week before it was released.

Okay. Thank you, Kat.

I’m not aware of any direct engagement on the Bill.

Sam.

Other than the consultation previously, two years ago, we haven’t had any direct involvement. And also, we did criticise the consultation at the time for not being accessible to people with a learning disability, and the consultation wasn’t available in easy-read. So, the process was not so accessible then for people with a learning disability to have a view.

Do you think the Bill would have been a better Bill, as presented, if the Government had reached out and consulted with you?

I think there would have been a lot more co-production, and a lot more views. Whether people are happy with this Bill is for your research to find after your consultation period.

Are you happy with this Bill?

I’m happy with the intended results. I’m not so happy with the length of time it’s going to take because there are some people that are desperate for this to be now, rather than in a couple of years. I know that, in my own experience, it's only because of me knowing my rights, it's me knowing how to advocate for myself that I've been able to establish what I've got. So, it's not going to come quickly enough for a lot of people.

I'll come to you now, Jake. Our work will lead to a series of recommendations to the Government, so, in your view, what would be a key recommendation for us? And I ask the question to Jake and Sam, before we finish.

Firstly, I do think you can see, in the development of the Bill, a through line from engagement with service users and carers. So, for example, my understanding is that the Audit Wales report into the use of direct payments in adult social services from a couple of years ago did inform the Welsh Government's thinking around this Bill, and I know Audit Wales did engage with people through that. But the most important thing is, moving forward, that there's a strong commitment to co-producing the refinement of the principles of the Bill as it moves forward, but also co-producing any resulting guidance and any resulting information and advice for carers and for service users—for everyone. So, I think we've got an opportunity, moving forward, to make sure there's strong co-production. Obviously, we, as an organisation, and I'm sure everyone on this panel, would be really keen to work with the Welsh Government on that.

So, in addition to that co-production of guidance, of information and advice, as I've said, I think we need to see greater flexibility in the use of direct payments, but also greater clarity in terms of what they can be used for, and, finally, strong staff training and awareness so that health staff, local authority staff, everyone from care co-ordinators through to social workers know that this change is coming into force, they know that it's now an option, and they can communicate and effectively discuss it with families.

And, Sam, what would be, in your view, a recommendation that we could make as a committee to make the Bill better?

I think something around people having a right to support if they go down the direct payments route—rather than it just being a 'should', I think it has to be a 'must'. People have to have access to support and expertise—

How could that happen?

I suppose I'm not sure. As I say, each local authority or health board has to set up some form of support and expertise in each area that people can call on, so that if anyone in that area is having direct payments, they know where they can go. So, it has to be integrated into—. Whether it's, as Jake said, within local authorities' information and advice services, there has to be that support available so that anyone going down that route knows that they've got that safety net.

Thank you. Thank you, all, for your time this morning and your contribution before the meeting, as well. So, diolch yn fawr iawn. Thank you very much. We'll send you a copy of the transcript, and if there's anything that you think that we should be further aware of or if you have further thoughts, then please, of course, make us aware as a committee. But thank you for your time this morning. We really appreciate it. Thank you.

Thank you.

I move to item 4. There are a couple of papers to note. There's a letter to stakeholders following the evidence session on 17 April, and a response from the Centre for Mental Health. There's also a letter to the Cabinet Secretary for Health and Social Care regarding the suspension of maternity services at Swansea Bay University Health Board, and the Cabinet Secretary's response. Are Members happy to note those papers? Thank you.

In that case, I move to item 5 and, in accordance with Standing Order 17.42, can I propose that we resolve to exclude the public from the remainder of the meeting, if we're all content? We are. In that case, we'll move to private session.