National Assembly for Wales

Bore da. Good morning. Welcome to the Health and Social Care Committee this morning. As always, we operate bilingually, in both Cymraeg and English as well, and some Members are here on the Senedd estate, and we have some witnesses this morning who are attending virtually. 

So, as I move to item 1, we have apologies from Sam Rowlands this morning, and I'd like to welcome Altaf Hussain, who is substituting for Sam. And if there are any further declarations, or if there are any declarations of interest, please do say now. No.

In that case, I move to item 2 this morning. Item 2—we continue our scrutiny of the Health and Social Care (Wales) Bill, and this morning there is an opportunity to hear from those who have direct experience of continuing NHS healthcare through direct payments. I would like to welcome you to the meeting this morning. So, in the meeting, we have Shahd Zorob, John Hunt and Cecilia Kenny. So, I'd like to welcome you all to the committee this morning, and thank you very much for being willing to speak to us this morning. Sorry, I do apologise, and Nathan Lee Davies as well. I do apologise. Thank you for being with us this morning. I'm going to ask you an opening question—a very general question—to start with. I'm just wondering if any of you would be prepared just to talk to us about your experience of direct payments and using direct payments, and any general reflections that you have. That will help us, perhaps, set the tone for the rest of the meeting. Who would like to address that point? Perhaps if you could just wave at the screen, or indicate in some way, if you would like to come in on that point. Yes, there we are—Nathan Lee Davies.

Okay. I'm Chris Hall with Nathan. I'll let Nathan speak and have a go. You can go, Nathan. 

I've had a very negative experience with direct payments. The local authority have recently clawed back £33,000 of my direct payments that I was saving for a proposed short break. And I find it very difficult to spend my money in the way I want. And now I think I will hand over to my friend Chris Hall, who can explain more quickly and in a more efficient manner because of my speech difficulties. Me and Chris have been discussing all the issues I have faced over the last week or so, and we've made a big list of the points that I would like to make. I'll pass over to Chris now, who can take over.

Okay. Subject to guidance from the Chair, shall I say a few points, Chair?

Yes, please, and thank you, Nathan. Yes, please, Chris.

Okay. Well, firstly, we've tried to look at the Bill, but the first difficulty is, once we got notice just over a week ago about this—that's nobody's fault—we've been trying to go through it day by day or night by night, and then I make notes and then I write it up. We will make a written submission in due course. So, we haven't got through the entire document, but what we find is, obviously looking at the continuing healthcare, CHC, we have a suspicion or a doubt that the proposals that we're coming across are simply going to deliver what you think or what you predict, or hope or anticipate they will deliver.

Nathan receives money and his problem is then twofold: he wants to spend it on various things and then he comes up against the local authority, and this is backdated because they don't find out what he's spent money on until they look at his accounts and receipts, and then they say, 'You can't spend that money—what did you spend it on?' He tells them what he spent it on and they say, 'Well, you shouldn't have spent it on that. Can we have that money back?' That leads to a problem with, you could say, items that we think are perfectly reasonable for day-to-day living, and it becomes almost impossible, because Nathan then starts asking me. I'm part of what we call Nathan's informal care co-operative—in other words, we're not paid and we're good friends and we try and help Nathan, and when he needs some support, we offer it as best as we can. But that's the totality of Nathan's support and back-up. So, Nathan finds himself in a continual battle against the local authority. He does receive the money, but now they take it back. Having taken £33,000 back, you might think, 'Well, he must have a lot of money for them to take that back,' but the fact of the matter is—and it's something for a lot of disabled people that seems to be slightly ignored by the legislation and the development of it—that disabled people, much more than me and you and others, also need to save money for a rainy day. They don't receive a pension. They need to save for a rainy day. And there are two things: one is that you can guarantee that disabled people will have a rainy day, and the other thing is that a rainy day is probably a lot more catastrophic for a person in disabled circumstances than my rainy day, if I had a difficulty. So, we use what we refer to as the Goldilocks principle, which, for Nathan against the local authority, is that the money is either too much money—so says the local authority—or too little and then Nathan is saying to them, 'I've got too little money.' So, he's got to be on the Goldilocks line, which is the 'just right'—'I've got just the right amount of money.' And the result of just the right amount of money means he can't seem to save for a rainy day or anything going wrong. But if you are on a high wire, balancing on just the right amount of money, you can't plan for anything and you can't predict, and you certainly can't be sure whether the local authority is going to say, 'We're going to take that money back because you spent it on the wrong thing.' He has a lot of difficulties with that.

A big thing in your legislation, which is quite clear, and you're aware of it, is simply that if a person in Nathan's circumstances on direct payments were to consider going onto CHC, continuing healthcare, if he was classified as eligible for it, he runs the risk of not being able to go back to, as I think we would call it, the status quo of having direct payments with the local authority. So, he could be told he's eligible. Then he says, 'But I don't actually want to now that I've seen what it entails. I don't want to go onto continuing healthcare. I want to go back to receiving my direct payments from the local authority'. And at that point, the local authority will say, 'Well, you can get your care somewhere else and, therefore, we don't have to provide it.' Nathan, therefore, has a complete reluctance to dip his toe in the water or even look at the possibility of continuing healthcare.

Chris, I'm just going to come in. Thank you so much, and Nathan also, for setting out some earlier experiences. I know that some of the Members want to come in and ask you about some of what you've just talked about. If that's okay, I'll just bring Cecilia in as well and I'll come back to you in a moment, if that's all right. Thank you, Chris and Nathan. Cecilia, you wanted to perhaps just talk to your experience as well.

For quite a long time, I was a founder member of the scheme in Wrexham, so I've done it for over 20 years now. And I have very similar concerns to Nathan if we got transferred over to the actual scheme that's in the report, because we're not too sure whether we can get back. One of the issues with direct payments is that you do have to be very aware that your needs are met—for your support needs—and it is difficult to keep an ongoing set-up, so I do understand Nathan's point of view. I think one of the things is that you need much clearer information from people to actually know where this new scheme is going, and I do think it does have its worries as the Bill goes through, because, like Nathan, I was only able to read a certain amount of it, but, in principle, as an everyday thing, the direct payments work very well. It's just that it does take a lot of wielding, and, like Nathan's gentleman who is helping, it is very linked to—. Just using it as an everyday thing, it doesn't take into account that, if you have any issue in an emergency, you have to get back to people and say that you've got an issue and then chase it up as it happens and you're in the crisis, or, when you're trying to plan ahead, it takes a lot of work to do that. But, as a principle, as a working thing every day, it's fine and we hope that doing these consultations with you tries to improve things for everybody involved. 

Thank you so much, Cecilia, that's really helpful. There are quite a few Members who want to ask questions on a lot of what you've said and what Nathan has said as well. So, I won't ask any more questions at the moment. I'm going to bring in one of my colleagues, Joyce Watson, to ask some questions now and, Shahd, I'll bring you in at some point as well. But, Joyce, do you want to ask your questions?

Yes. Good morning and thank you for joining us today. We really want to hear from you. So, we have the plans to extend direct payments to allow them to be used for healthcare, and you've talked about that. What do you think would be the main advantages for people?

I don't know if you want to come in now, Shahd. Feel welcome to come in now, or do you want me to go to somebody else first to answer that—to address that point?

You can go and ask someone else first and then I can come in after that person.

Okay, no problem at all. I'll come back to you in a moment as well. Shahd, I'll come back to you with any opening thoughts that you've got and then perhaps to consider what Joyce has asked as well. Perhaps I'll bring Nathan or Chris in, if you want to speak to Joyce's question.

Right. We're unmuted, I guess. Okay. I think Nathan's first point might be—I'm looking at Nathan just in case he wants to indicate—that I don't think he felt able to say that he's particularly delighted at this particular move, but he wanted to express concerns obviously that we faced, he faced. He's done a petition to the Petitions Committee, and we just feel slightly that the direction of what is being done seems to overlook what you started with the Social Services and Well-being (Wales) Act 2014. You did a review of it and a final evaluation report was done last year, and we read one paragraph, or I want to read one paragraph of that to you, to say this is what's not happening on the ground. Therefore, before you move ahead and make changes, you think, 'What’s that?' I’m saying it’s not necessarily all about money; money doesn’t—[Inaudible.]—power. Voice and control and co-production are things Nathan wants and we want. What it actually does is just makes other people look at Nathan, and say, 'There's a load of cash there and I want some', or, 'I want to look at that pile of cash and I want to save money, or I want to reduce costs.' And I see a lot of that in the legislation. You’ve done all sorts of calculations, where you say, 'We'll save money by this; this will cost less; local authorities will save money here.' I’m not saying that’s wrong, I’m sure you know it a lot better than me, and maybe fingers crossed that it works out that it’s right, but I just don’t think that’s why it gets to the issues, and that’s why I wanted and Nathan wanted—[Inaudible.]—lived experience. So, I’ll read this paragraph—[Inaudible.]—

Oh, Chris. I'm sorry to interrupt. I'm just checking—. We can just about hear you, but we're struggling a little bit, so I'm just checking; if you move back a bit, I wonder whether that will help the sound a bit. Perhaps carry on—oh, that's much better. Thank you. Appreciate it. If you're in that position, that would help us hear it better. Thank you, Chris.

I will try not to move. I hope that's okay. Tell me if I get it wrong.

No, you're much better now. The clarity is much better.

Thank you. Okay, so the final evaluation report was done in 2023 and, at paragraph 6.60, it says:

'For the majority of service user and carer respondents interviewed for this evaluation, their experience was one of frustration. Against the hope offered by the Act, they perceived a series of barriers. These included a relatively "tokenistic" approach to listening, power imbalances between themselves and professionals, the need to constantly chase professionals for support, and a lack of recognition of their rights especially around issues of cultural sensitivity among others. These barriers served to work against the experience "offered" and "promised" by the Act’s underlying principles.'

So, that's one paragraph, and there's a whole report there on the 2014 Act; we like the 2014 Act and we support it, and what we hoped when you were thinking, ‘We're going to do a reform of social care’, we thought fundamentally, you would look at the 2023 review and say, 'Where did that find failures or failings or shortcomings?’ And what it found was the practice or the intention in the legislation has not necessarily translated to what really happens on the ground. 

Thank—

And the fundamental principles, be it well-being, voice and control, and fundamentally for Nathan, as a good example, co-production. Nathan gets nil opportunity for co-production of his care and support plan with the local authority, and this is a terrible battle for Nathan, so that you’ve got a dysfunction between Nathan—David—and Goliath—the local authority, Wrexham council—and then they divide themselves into two departments, so that Nathan is sent around the houses. He has a battle with the DP, the direct payments department, who start arguing with him over what he has spent his money on, or not spent his money on, or why he's spent it, or why he's saving money, and, 'Can we have it back? We're going to claw it back.' So, that was all last year. That happened all last year.

Oh, Chris. Sorry, can I come in? I'm so sorry to interrupt, but we've got quite a lot of other questions to get through. What you're saying is really, really helpful, but it might be that some of what you're saying could be drawn out in some of the other Members' questions as well. I'm so sorry to interrupt. I just want to bring Shahd in. Shahd, have I pronounced your name correctly, first of all?

You did.

I'm pleased. Have you got anything to say in terms of any opening comments? Joyce, do you want to just repeat one of your earlier questions, as well, and I'll bring you in, Shahd?

Hi, Shahd. I just want to ask what you think will be the main advantages and disadvantages of moving, if you're not already on direct payments.

I don't have help. I don't have a medical condition where I need to be constantly in bed or anything like that. My condition is lifelong, but I can get up from the bed and do my own things and stuff, so that will not benefit me in any which way. Because everyone's different and everyone has different needs and everyone has different lifestyles, not everyone should be put in the box of how to make it easier for the Government and more feasible. Whatever funds we've got, just do it the best way possible. If you agree with me or disagree, that's my opinion.

Thank you. We're in listening mode at the moment, but that's really helpful. Joyce, do you have any further questions?

No.

No. In that case, I'll come—. Oh, Cecilia, did you want to come in? Sorry.

I just wanted to point out that, as a scheme, direct payments, like anything, has it's issues, but for a lot of people, it does work well, me included. I think one of the issues with changing over to different funding is it's not fully clear from the Act how it would work for us, and I think that's where the big concerns are coming from.

Okay, that's really helpful. Thank you, Cecilia. I'm going to bring in another one of the Members in the room now, Mabon ap Gwynfor, to ask some questions. Mabon.

Diolch. Thank you. I'm just wondering—. It's interesting, Chris, you mentioning that you're a volunteer yourself. For all three of you, are you aware of people having difficulties in finding and recruiting personal assistants?

So, Chris, do you want to come in, or Nathan? Then I'll bring in Shahd. Perhaps you want to come in first, and I'll come to you then, Chris.

I just want to say that the pay is not good enough. It doesn't attract anyone. You can go to Aldi or the other shops and earn more. In this job you're doing a lot more. And then people don't treat it as if it's a real job. People think it's quite a simple job, they don't take it seriously. It's a serious job, I guess, and there should be, as well, a course or a qualification, so people can go into this job with a qualification as well.

Thank you, Shahd. That's a view I know others have expressed as well, so that's really helpful. And then Chris or Nathan, did you want to come in on Mabon's question?

Yes, happy to come in on that. I've just checked with Nathan, and, essentially, he finds it difficult recruiting staff and it tends to be almost a revolving door. He's got, I think, about 10 staff. Yes, he's just nodded, and I think he's in the process of probably having one leaving shortly, so he'll be recruiting again. It's difficult to retain them. He had security while he had a cushion of some money in his direct payments. That has been taken away and I know he went frantic just before Christmas thinking, 'Can I pay my staff?' I personally felt that he could just about pay, but it's no reassurance to Nathan that I think he can pay his staff if he's not sure—in other words, he's had the stress and the worry, and I didn't have the consequences, if I was wrong. And it's back to the tightrope point: he was not sure, was not comfortable and yet, for three previous years, he had at least managed the business. He's effectively self-employing and managing 10 staff and employing 10 staff. So, that is a difficulty that he has to deal with. He received direct payments, but it's then quite how he spends the money that has caused so much of a problem.

But it's dysfunctional, as I was trying to make the point, between the direct payments department, which gives him the money and then tries to take it away, and the care and support of the social services department, which is so recalcitrant and reluctant to work with Nathan and the system, that we end up with a defective care and support plan. So, we've had to write the care and support plan, which we've then had to battle for five or six months to get adopted, and it's only when that is adopted that we are more confident. We're now having to make new ground and say, 'Right, we think it's in the care plan and it can become an assessed eligible need', and that is the trigger that often allows the council to say, 'Yes, you can spend your direct payment on this; it's an assessed eligible need.' But our annoyance is that, 'Yes, but previously my care plan was so appallingly written, I didn't have many assessed eligible needs, so I couldn't spend the money.' And that's where we ended up with a horrendous problem. I'll stop there, because I know you want to ask another question.

Thank you so much. I'm just wondering, Mabon, if you want to come in with another question and then I'll bring in Cecilia.

Yes. I'm aware that you did mention earlier that you've only probably scanned or read parts of the proposals in front of us. From what you've read, do you have any thoughts on whether the proposals might have any unintended consequences, either negative or beneficial?

Cecilia, do you want to come in on that question or the question before? Any points you want to make to the last two questions?

On the last question, recruiting has always been an issue, because of all different things. And there is a capability of doing training on the scheme through the works development part for people, but that can be quite difficult to access as well. As Nathan's friend said, on the other side of it, I think it's got to be much clearer how you can do things, because you're always doing it as it happens, and you can't actually plan ahead very well about what's been done.

But I think the overall thing about all of this is that, when they do the assessments and they look at the outcomes of the scheme, they need to make sure that the reviews are done a lot better, so that you can show the outcomes of what's been done. Because that will make things, I think, a lot easier for yourselves to see how the scheme is working and how things improve for yourself and us, altogether, I think, as recipients of it. I think this is where people are finding the everyday set-up of having to constantly be in touch with either the direct payment scheme or the social service part of it—that's where there are difficulties, with the communication part. And it's all put down to how your outcomes are on your care plan and I think your care plans are the things that cause the problem, because, as Nathan's friend said, they're not always written up very well, what they should be and what's expected on both parts. And if you can't get that done and if you're not like Nathan and myself and able to be verbal about it and actually get the assistance, I think it can be difficult to do things.

Thank you, Cecilia. Did you have any other questions, Mabon? If not, I'll see whether anybody wants to come in on the two questions.

That's fine, yes.

No, there are no other questions.

There we are. Shahd, did you want to come in at all, or Nathan or Chris as well? Just indicate if you want to come in. There we are, Chris or Nathan.

To try to answer part of the question, I think we've talked about the first bit, on staff and recruitment, which is a difficulty for Nathan, and with the money being taken away it has just been made more stressful and difficult. Nathan, to be fair, is on beta blockers because of the stress that he's had with the council. You asked whether there were any unintended consequences—sorry, if I can be heard—and the first thing I can think of, and I think you slightly perceive it, is that, for people going across to continuing healthcare, if they then qualify, and we've covered it for Nathan, because Nathan is very cautious about this—. If he qualifies, he can't simply say, 'On reflection, I don't want continuing healthcare, and, therefore, I want to go back to working with direct payments from my local authority'. They have the option of saying, 'Well, we don't actually need to provide care for you now because you can get it from another source'. The very fact of going for the assessment takes away, I think, the status quo. That looks like an unintended consequence or a consequence that makes people reluctant to go for tests on their eligibility. 

Whether people come forward or not, again, is something that I can't say, but I do worry that some of them would come forward and the unintended consequence that I, personally, can perceive is that they join you in thinking that your solution of providing funding—direct payments—for continuing healthcare is going to be the solution, and I, personally, don't think it is going to be the solution. It might be part of the solution, but I think more needs to be done with the principles of the original Act; in other words, co-production, voice and control, and well-being. Giving people money, actually, doesn't strengthen them; you leave them at the mercy of the organisations they are pitted against. I say that, and I've looked at the notes that I've made, and I'll just quickly say that there are a load of organisations where, on reflection, we think of people, individuals, fighting against the powers that be, and keeping them under the thumb—an example currently, obviously, being the Horizon scandal and all of the Post Office staff. They are individuals who tried to argue with an organisation and they were not heard, and it took a massive effort. The Hillsborough scandal—the families of the dead football supporters have had to fight for 10 years for their rights. The blood scandal, and various hospital trusts, which have been investigated by Newsnight—Birmingham midlands hospital trust and, also, Brighton hospital foundation trust have all kept the lid on difficulties and scandals, and the individuals have had to fight, and fight for years. Nathan is currently on his own and trying to fight, and trying to raise awareness of his difficulties, and he may have to carry on fighting and he may never be fully heard—well, we'll make him heard to you as much as we can.

I just think that people are going to go into this and they could end up taking CHC, funded by the NHS direct payments, then realise that it's not for them, but they can't go back. So, that's an unintended consequence, and I just think you've got a David-versus-Goliath situation. Your shortfall or your failing, again, is in the principles, which are not being backed up or supported by you. That's what you need to do, not look at the money necessarily. Also, just listening to the others, Cecilia and Shahd, and for Nathan, they are sort of isolated and on their own, and they lack the back-up and support. So, in our petition—Nathan's petition—we have said that, colloquially, so forgive my use of this broad term, Nathan and the others need a disabled persons' trade union and someone to fight and argue for them so that they are not up against big organisations, where they will lose.

Thank you, Chris. Thank you. I'm going to bring in one of my other colleagues now—Mark Drakeford. He's got a series of questions as well. I might come back to you, Shahd, as well, if you haven't felt that you've addressed all the points that Mabon asked as well. Mark.

Chair, thank you very much, and thanks to all of you for being with us this morning. A special good morning to Nathan, who it's very good to be talking with again.

Let's just assume for a minute that the Bill goes through, what it will do will mean that people who qualify for continuing healthcare who today cannot use direct payments for those purposes will be able to use them in the future. So, I think my question is: in those circumstances, how can health boards do a better job of this than some local authorities have in the past? We've heard from Nathan about the battles he has had with his local authority to get a satisfactory service through direct payments. Health boards will be taking this on for the first time. They ought to be able to learn from the experience of local authorities and health bodies in England. What I'm interested to hear from you is what do health boards need to do to do a better job of direct payments if they are providing them for continuing healthcare?

I'll pause a moment. Anybody else? Would any of you like to address that point first? I'm just looking at the screen. Okay, there we are—Shahd, I'll come to you first, then. Shahd.

It's not a good idea, because, the health boards right now are overworked, they're not doing their main job properly, and you're asking them to do another new job. How do you expect them to do this very well, and to do what they already are doing? You're introducing new things to them. I don't understand it. It's not going to work, guys. It's not going to really work.

Thank you, Shahd. And, Cecilia, did you want to come in on that point, on Mark's question, as well?

Yes. I think, if it does take over, one of the biggest things that's always been mentioned in this is to make sure it's very clear what they allow people to do, and keep the communications going with what would possibly be the recipients. But also, as it's previously been mentioned, I think the other big thing that they need is we need someone that we refer to that can actually fully liaise with the health boards, to say, 'Is this correct?', and we need to know that we've got what they're hoping to do with the outcomes of it, that everybody understands totally what is going on. I think that just changing from one scheme to the other is not going to make it easy for everybody, unless the communication and the details of it are very clear. It's the overall issue. I think that's what most people would want. I think it would make it so much—. Action is needed. You've got a lot of issues with the healthcare system all round, and I don't know whether it's going to be able to be dealt with because of how much need is needed in all different fields.

Thank you, Cecilia. Just before I bring Chris and Nathan in, are there any other questions that you wanted to ask or points you wanted to make, Mark?

Just one, Chair. If the Bill goes through, what it will do will be to provide a right for people who want to use direct payments for continuing healthcare. It isn't changing the system so that everybody will have direct payments. Many people will choose to stay with the system that they know and rely on now. About one in 10 people choose to use direct payments in the current system. Do you think we should expect around the same sort of percentage of people to opt for direct payments for continuing healthcare? Do you think more people will want to, or, given some of the things we've heard, do you think fewer people will actually want to choose the new system? But it will be a be a choice. Nobody will have to take direct payments, only people who think that would be right for them.

Thank you. I was going to bring Nathan and Chris in, but Cecilia wants to come in with a quick point on that. Then I'll come to you finally, Nathan and Chris. Cecilia.

I think it's great that you would have the right through the scheme, because I think there has been a case of low numbers. Again, whichever support set-up you have, I think the biggest problem for a lot new people in it is to say that they don't fully understand what they're actually getting into. It's not commonly known, even with the professionals, to offer this sort of set-up as an option of care. I always promote it with people, because, like I say, I'm a founder member, so I really do have a good understanding and, in principle, it works really well as an everyday thing, but it's a lot of responsibility for people if they don't understand what it actually entails. From Nathan's experience, which has been spoken about today, as well as my own, that can be very stressful at times, to keep it running, because you're doing it with all different people. When it's working as an everyday thing, it's very, very good, but I think they need to know that you're going to have much better back-up than what we've got now.

Thank you, Cecilia. I'm going to come to Nathan and Chris now, to respond to Mark's questions.

Okay. Thank you. Firstly, Nathan just wants to pass his regards to Mark for all the work he did, and it's much appreciated. Nathan's case was always looked at and borne in mind, so thank you for that, Mark. Secondly, Nathan wanted to remind us that there used to be a tripartite system that was in place, which meant that you had the local authority and you had the recipient, such as Nathan, and then there was, effectively, an advocate who could make the case, and Nathan had someone he could turn to and say, 'I don't think this is fair. Can you help me and can we do some sort of negotiation?' And that system existed under the independent living fund, or the Welsh independent living grant, both of which don't, effectively, exist now, and it's something that you might want to be going back to, or recognising that you've got to install something, because it's the lack of support, the lack of, 'How do I deal and negotiate with a big organisation?'

Mark, you were asking what the health board should do, if I've got that right. I would say that the fundamental thing is to go back to the five principles of the 2014 Act. For Nathan, we focus upon well-being, voice and control, and co-production, and I'm very strong on the issue of co-production, because I, obviously, have to work very closely with Nathan and make sure that what I say and do, or how I operate, is close to what Nathan wants me to do or say. If it's not what Nathan wants me to do or say, I'm actually doing him a big disservice. I have to tell you that the local authority do nil co-production with Nathan—they're not interested in what Nathan wants. So, if the health board then said, 'Right, Nathan, you're on continuing healthcare. We will co-produce with you,' or, 'We will give you voice and control', I don't think it's about the money necessarily; it's will they actually—will they actually—give Nathan voice and control? Will they actually co-produce with Nathan, or will they merely utter the words and then not actually deliver the service?

At that point, leading back to a previous question of an unintended consequence, Nathan has been drawn into continuing healthcare with direct payments, under a new system, option 2, and then, at that point, he wants to pull out or withdraw because he feels the principles are not being followed, but it's not clear where he goes, and I think that Nathan, and many people who are disabled, will say, 'It's better the devil I know.' Rather than jumping into a swimming pool and saying, 'I'll see if I can swim', they're saying, 'I'll stay on the edge of the pool because at least I'm not drowning.' I'll leave it at that. 

Yes. Thank you, Nathan and Chris. Altaf Hussain.

Thank you very much, Chair. Thanks, Chris, and, yes, you have already touched on most of these questions, really. Let me go through it again. I'll be asking about continuing healthcare. Do you think there are many disabled people that are currently refusing to apply for continuing healthcare for fear of losing their direct payments? And do you know how many people in local authority—? We know roughly there might be five people in each local authority at present waiting for it. What are your assessments and what do you think about it?

So, I'm just looking at anybody who would like to come in first. If you just indicate, and I'll bring you in. There we are. Okay, Chris and Nathan.

Well, firstly, I was happy to sit back, because I appreciate that me and Nathan have had a reasonable chance to speak, so I'm happy to sit back if others want to say anything.

I don't see any reason why we—any reason, to be fair to you—why we would be expected to know about the numbers across Wrexham, north Wales or Wales, why we would be expected to particularly know about how many people are likely to be interested in continuing healthcare or suitable for it, and who might come forward. I don't think we can answer that question. I don’t think me and Nathan would be able to.

We belong to a group called Arfon Access. We try to share information there, for people with disabilities, but, once again, the difficulty that we find is we're mostly isolated volunteers. We have an evening Zoom meeting, and that's how we found out about this consultation, but that doesn't give us the resources to gather information, share information, beyond an occasional meeting.

But what I would say is simply that I suspect a lot of people are probably nervous. For me, with bank accounts and gas and electricity, I sit on inertia. I just stick with the gas and the electric provider, I stick with all those things I know, even if I'm a bit grumbling about them, simply because I'm not sure if the one round the corner or over there is better. This is, personally, I think, a problem, a capitalist sort of a problem. You don't know who's a good dentist or a good estate agent or a good school until you try it, and at that point you're still not sure. You're not the expert. You may know the care you want, but it doesn't make you the expert in the sorts of things that others can provide for you. So, that's why I go back to the fact that you need some sort of a trade union body or some sort of an advocate or some sort of a third party, a tripartite system that's going to provide the support for people with disabilities, who as—. As Shahd has already said, we're all individuals. They're individuals, so it's very difficult for them to have a collective voice and speak with one voice when they've all got such individual circumstances. I think that's something that seems to be regularly overlooked. I'll leave it there.

Thank you, Chris. I'll ask Altaf, if you want to come in, and then I'll bring Cecilia in then.

Thank you very much. Let me ask you another question. Do you have any views on how well NHS continuing healthcare is currently working for those who need it, and are there any specific issues to consider for this Bill?

Okay. Cecilia—anything you want to respond to Altaf's two questions, and any other comments that you want to make in regards to the Bill.

As Chris has mentioned, we don't actually have the numbers of what people are on the schemes and stuff like that. That would come from the local authority in the other patch. I knew about this particular meeting because I'm linked into some of the disability networks, which in my case was Disability Wales, so if you've got that sort of contact you may have an idea of what's going on. But to give people a proper idea of numbers and that—that's not our sort of remit as an individual person. A lot of it is actually—. You'd have to get those details from the local authority and in other ways to actually have a thing. But I do think a lot of people are very scared about taking on something they don't understand—or even their choices, because they're not given enough details about which would be the better scheme. As you are getting with this meeting, this is the same thing every time we speak to different bodies and give information, and I think this is where the frustration for the individual is, as well as yourselves on the committee.

Thank you, Cecilia. Shahd, can I just check: did you want to say anything on the last couple of questions that have been asked? If you don't, that's fine—I'll go on to the next person who's asking questions. 

I support one of the participants on the call today, actually, about the advocate for disabled people. I think it's very important now to have an advocate or a service that everyone—not everyone, but that they know of some cases like yourself, how to support you, how to give you assistance, and how assist you if you need them in any which way, because, in the end, you're on the phone but you can't get out. I always say, if the ship is already sinking, how do you get out of the ship? It's hard. It's not an easy ride, I don't think.  

Thank you, Shahd. Thank you very much. Thank you. I'm going to come to the last set of questions now, which are going to be from John Griffiths. So, John. 

Diolch yn fawr, Cadeirydd, and thanks very much to all of you for giving evidence to committee this morning. Obviously, from what you've said already, having adequate support—what you consider to be adequate support—is absolutely crucial to this agenda if you are going to have the choices and informed choices and confidence to make change that you might want to make. So, we've heard, haven't we, that maybe there could be a trade union or an advocate or some third party. Cecilia, you mentioned that you too consider that need for back-up is very important. Did you have any particular view as to what form that support, that back-up, might take?

We've actually got the direct payments forum, which we have a little bit of support with, and previously, when we had the scheme originally, we had the Association of Voluntary Organisations in Wrexham, which is our local voluntary service, which was very involved, but they lost the support contract to that quite a few years ago. So, those sorts of things can be available, but there's no real structure involved with that. And I think one of the problems you have as the authority, and as any of these schemes go, because people are dealing with their everyday lives and running their whatever scheme to do their support, because of their lack of knowledge of the disabled people or the care even, as in their care support, they don't feel they have the skills to actually go to something like the forum and speak up. And you end up that you get a lot of information about what people's issues are, but you haven't got actually people to speak to so easily to resolve your issue; you have to go back to either direct payments or the social services again, and that's where the great fight comes, and I don't think there's a lot of people available to do that. 

Personally, I've done a lot from day 1, but I don't think the average person feels they can do that as an everyday thing. They're just concentrating on what they're actually doing to survive and support themselves in their everyday living. And I think that's the big problem. So, how we get that, whether it's a union, or whether it's some sort of support agency, I don't know. That's the problem with it. And I think it's just something that we really have to put in place with the actual policy of this so that we can actually make sure it's running to its better capacity, and it carries on doing that. Because I don't think, as direct payments have gone on at the moment, that it's—. When it initially started, it worked very well, because I was able to do things like go to university and get a business degree, and I brought up my son. As time's gone on, it's lost its flexibility. And I think that one of the things is that we do need to make sure there is enough of a back-up again, but I'm not completely sure how you're going to do that.

No. Well, thanks for that, Cecilia, because I think that's very useful, and it's one of the really important issues in this discussion and debate, isn't it? I just wonder if any of you would like to raise anything else that we haven't covered yet in this session today—any particular points you'd like to make, or any key messages you'd like to leave committee with.

So, I'll come to you one by one, then, for that last question. I think Nathan and Chris, you were indicating first there. So, we're looking for key messages that you want to put across to us.

Thank you. Firstly, I think Nathan wanted to make the point that he sensed that this legislation at least has a feel—. And it's not his complete picture, but is it simply about saving money for local authorities, or local authorities haven't got the money, so we can shift the money and the budget elsewhere? And if that's all, then we'll still have problems. So, Nathan and I would be concerned about that. I've tried to emphasise it's not all about money, it's about the principles, and the principles are not being worked properly in practice. I'd follow up what the previous speaker has said, and I'd use the words 'attrition' and 'worn down'. Disabled people suffer the fact that attrition against a council, or a large organisation, makes it very difficult for them to fight and fight and fight and fight again. Nathan's a very strong character, and he is one of the people who will fight and fight and fight again, but it's not fair. That's why I then support him, and others support him, because, as a matter of fairness, he deserves to actually be able to get on with his life, which is absolutely impossible. In order to take his trip to Florida, a short break—the money had been mostly taken from him—he had to do a fundraiser, a GoFundMe, with the public. And the public overwhelmingly supported him, because they felt there was an injustice, and they provided nearly £6,000 to fund the trip. But the local authority had taken all the money. So, then the local authority would see that as a win, 'Oh, that's great, we've got the public to pay for this, and we've taken the money back from Nathan.'

So, the public paid twice.

Nathan says the public paid twice—there you go. Disabled people are not easily—. Their circumstances are not easily understood. I fear that this is leading itself in some sort of a monetary direction, for which I do not know where the end of that is. And I completely back up again what the previous speaker has just said, because the fund, it has worked well in the past, but, increasingly, it's about chasing money and saving money. But, when you look across the UK, the Scottish independent living fund has only, two months ago, been relaunched and widened in its offer and execution. And they do all the things that have been mentioned: they offer people a wider variety of skills, services, teaching opportunities, designed to truly empower the disabled recipient, to give them a real choice, a voice and control, and give them the options not just to exist—and that is what Nathan is effectively doing too much of the time—but to live a fulfilled life. And that's why we're so bitter about this, because we argue with the council, and they just say, 'If you don't like it, put in a complaint', because they actually know they'll win on the complaint, because the system is effectively rigged against people in Nathan's circumstances. I think I'll leave it there. Thank you.

Thank you, Nathan and Chris. I'll come to Shahd next. Are there any key messages that you want to leave us with?

I just want to say about the pay. At the moment, I cannot recruit people on £13.50. The Government only recently updated that because of the minimum wage. Is there any conversation that's happening right now about the pay? Because it needs to be either matching shops or matching the hospitals. Do something about it, please, urgently, because it's not happening for me at the moment.

Thank you, Shahd. And Cecilia, you're the last one to be able to give a key message to us.

I'd like to say that I hope that we're able to keep working with people like you, to improve things and try and make the system work better. But the biggest one we all need is that it needs to be in much plainer language, so that people can understand what they hope the Bill will do, or what options people have for their support needs, whether it's through direct payments or the HSC, because if you don't understand what you're taking on, people won't engage with it properly. And I think also the local authorities need to have some sort of capability so that it's a plainer option for the options that we do have. But I'd like to point out to the committee that, for a lot of people, as an everyday system, it does work, but it always depends on how much co-operation you get from all the different bodies.

Thank you, Cecilia. Can I thank you all so much, Nathan, Cecilia and Shahd? I apologise, Shahd, I think I pronounced your name wrong a few times. And also, Chris, can I apologise? I interrupted a couple of times, but we had so many questions to get through, we were just keen to make sure we get through all we needed to. What will happen next is we will continue to take evidence from others. I know that you've all got an interest in our work, so if you feel that you want to add anything to what you've said, especially as this progresses and you hear perhaps other evidence that's been provided to us, then by all means please let us know. We'll provide you with a transcript of everything you've been asked today and your answers, and if you think of something else, following today's session, then of course you can let us know and we can add that to our evidence as well. But we're really grateful for your time this morning, so thank you for being with us.

Can I just say thank you very much for listening to all of us about this circumstance? I'm the very first person to join this committee with this topic. Thank you very much for listening. I hope to work with you regarding this issue. Slowly but surely, we'll find the best way forward.

Thank you, Shahd, that's really kind of you to say. We're going to end this section of the meeting now and we're going to take a few minutes' break, so I'll say goodbye to you all. Thank you very much. Diolch yn fawr iawn. We'll take a five or six-minute break, and be back at 10:40. 

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 they give 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 on two direct payments in adults 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.

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 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 care 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.