Y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon - Y Bumed Senedd
Health, Social Care and Sport Committee - Fifth Senedd21/11/2018
Aelodau'r Pwyllgor a oedd yn bresennol
Committee Members in Attendance
|Angela Burns AM|
|Dai Lloyd AM||Cadeirydd y Pwyllgor|
|Dawn Bowden AM|
|Gareth Bennett AM||Yn dirprwyo ar ran Neil Hamilton|
|Substitute for Neil Hamilton|
|Helen Mary Jones AM|
|Julie Morgan AM|
|Lynne Neagle AM|
|Rhianon Passmore AM|
Y rhai eraill a oedd yn bresennol
Others in Attendance
|Damien McCann||Cymdeithas Cyfarwyddwyr Gwasanaethau Cymdeithasol Cymru|
|Association of Directors of Social Services Cymru|
|Dawn Walters||Cymdeithas Alzheimer’s Cymru|
|Alzheimer’s Society Cymru|
|Huw Owen||Cymdeithas Alzheimer’s Cymru|
|Alzheimer’s Society Cymru|
|Kim Sparrey||Cymdeithas Llywodraeth Leol Cymru|
|Welsh Local Government Association|
|Lynne Hill||Plant yng Nghymru|
|Children in Wales|
|Naomi Alleyne||Cymdeithas Llywodraeth Leol Cymru|
|Welsh Local Government Association|
|Sarah Crawley||Barnardo's Cymru|
|Susan Elsmore||Cymdeithas Llywodraeth Leol Cymru|
|Welsh Local Government Association|
Swyddogion y Senedd a oedd yn bresennol
Senedd Officials in Attendance
|Lowri Jones||Dirprwy Glerc|
|Tanwen Summers||Ail Glerc|
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.
The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.
Dechreuodd rhan gyhoeddus y cyfarfod am 09:36.
The public part of the meeting began at 09:36.
Croeso i bawb i'r sesiwn gyhoeddus o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 2, ac rydw i'n falch o groesawu fy nghyd-Aelodau i'r pwyllgor yma'r bore yma. Rydym ni wedi derbyn ymddiheuriadau oddi wrth Neil Hamilton, ac mae Gareth Bennett yma yn dirprwyo yn ei le. A oes yna unrhyw ddatgan buddiannau sydd angen ei wneud y bore yma?
Welcome, everyone, to the public meeting of the Health, Social Care and Sport Committee here in the National Assembly for Wales. We have reached item 2, and I'm pleased to welcome my fellow Members to this committee this morning. We have received apologies from Neil Hamilton, and Gareth Bennett is here as a substitute. Are there any declarations of interest this morning?
Yes, I worked for Barnardo's.
And so did I.
At the same time, as it happens. [Laughter.]
Diolch yn fawr am hynny. Fe wnaf i ymhellach egluro bod y cyfarfod yma yn naturiol ddwyieithog. Gellir defnyddio clustffonau i glywed cyfieithu ar y pryd o'r Gymraeg i'r Saesneg ar sianel 1, neu i glywed cyfraniadau yn yr iaith wreiddiol yn well ar sianel 2. A allaf i ymhellach hysbysu pobl y dylid dilyn cyfarwyddiadau'r tywyswyr os bydd larwm tân yn canu? Ac mae'r meicroffonau yn gweithio'n awtomatig; nid oes angen eu cyffwrdd.
Thank you very much for that. Can I further explain that this meeting is, of course, bilingual? You can use the headphones to hear the interpretation from Welsh to English on channel 1, or to hear contributions in the original language amplified on channel 2. Can I further let you know that, in the event of a fire alarm, directions from the ushers should be followed, and that the microphones work automatically, so you do not need to touch them?
Felly, gyda chymaint â hynny o ragymadrodd, rydym ni wedi cyrraedd eitem 3, ac effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas â gofalwyr. Hynny yw, a ydy'r Ddeddf yma wedi gwneud gwahaniaeth go iawn i ofalwyr? O'n blaenau ni mae gyda ni sesiwn dystiolaeth gyda sefydliadau plant, felly rydw i'n falch iawn i allu croesawu Sarah Crawley, cyfarwyddwr Barnardo’s Cymru, Lynne Hill, cyfarwyddwr polisi, Plant yng Nghymru, a Geraint Turner, cydlynydd prosiect, YMCA. Croeso i'r tri ohonoch chi. Rydym ni wedi derbyn eich tystiolaeth ysgrifenedig ymlaen llaw. Mae amser yn rhyfeddol o brin y bore yma, ac felly awn ni'n syth i gwestiynau, sydd yn ôl ein traddodiad, ac mae Lynne Neagle yn mynd i ddechrau.
So, with that much of a preface, we have reached item 3, which is the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers. Does this Act make a real difference to carers? In front of us, we have an evidence session with children's organisations, so I'm very pleased to welcome Sarah Crawley, director of Barnardo’s Cymru, Lynne Hill, who is policy director for Children in Wales, and Geraint Turner, who is a project co-ordinator for YMCA. Welcome to all three of you. We have received your written evidence beforehand, and time is very short this morning, so we will go straight into questions, as usual. Lynne will start.
Thank you, and good morning. Can you just tell the committee how you see the scale of the issue with young carers, and whether their role is increasing in Wales?
Shall I go first? Young carers' issues are growing. The more we are doing to identify young carers as organisations, the more we're seeing that young carers need services and support. We know that young carers' assessments, as it says in the Act, aren't happening as a unity across Wales, and that's a massive issue. In Swansea alone, we work with about 150 young carers at the moment, and not one single one of them had a young carers' assessment as a statutory service. We've got our own assessment of needs for young carers in Swansea, but it's not a statutory assessment.
I suppose, from my perspective, we as Children in Wales don't actually deliver young carers' services, so I bring a network of workers together, and we've been doing that for about 10 years, I think. I'm aware from what they share that there is—. I would echo everything Geraint has said; there is a pressure on it. Every time we meet, somebody's lost a member of staff, or is about to lose a member of staff, or has a waiting list of 30, 40 young carers who they're trying to get to to assess. And I suppose what I see is a very different picture across Wales. So, I do know of a service that works very much to the Act and does the assessments, but that's one out of 22 authorities that I'm aware of.
Which one is that?
Oh, there we are. [Laughter.]
Yes. They have a—. They employ a social worker to do the assessments, and then integrate them with the services across the borough, but that's the only one that I know of.
So, we're providing four young carers' services directly across Wales, and then we impact on young carers through disability services as well, and then our Families First family support services. So, we've seen numbers increasing. Our average service area supports between 100 and 150 young carers. What concerns me is that that level isn't always changing in some local authorities. So, we'll see between 90 and 100 young carers at any one time, and actually, we should be seeing that, I think, increasing. So, I'm not seeing necessarily a shared picture across the board. What we're also seeing is reductions in funding, quite considerable reductions in funding, and carers' needs becoming more complex and more difficult. We've got our average young carers doing 15 to 20 hours a week of caring. I've got some services where we've got young carers doing up to 50 hours a week. That's over a full-time job just being a young carer.
What we're also seeing is school attendance reducing. On average, they're missing about 30 plus days of school. They're also having increasing levels of anxiety and mental health issues. We've got young carers who won't leave the home because they're worried that the person they're caring for will not take their medication, or have, say, an epileptic attack or a collapse or a fall. We've got young carers also increasingly looking after siblings. Where we've got two parents having to go out to work, we've got children with disabilities that they're caring for as well, and they're concerned about those siblings and their access to services in school as well. So, we are seeing a really quite drastic picture.
I'd say the main reduction for us has been the Families First funding. So, we've seen, in some areas, up to a 90 per cent reduction in Families First allocation over the last two to three years since the introduction of the Act. We've seen the carers grant used sparingly, I think I would put it, for young carers. It's generally used, and the proportion of the pot is generally used for older people. So, what we're seeing is a drastic reduction in the services we can provide collectively across the sector, and, to that point, we're losing the valued peer support, we're losing the group work, we're losing the respite, we're losing those activities that these young carers should be signposted to, and we're also getting to a stage where, as Lynne pointed out, we're at skeleton services. And we have seen that reduction drastically over the last two to three years.
So, I'll give you an indication. Some of my services are funded, and will be funded up to £40,000. That's one worker. They can carry out the assessments, which they do, but what provision can you provide on a further £3,000 or £5,000?
Okay. I think we've got further questions on this detail. We'll give you a chance to shine later on. Lynne, or has that covered both your questions?
I just wanted to follow up on that, really, because Families First funding allocated by Welsh Government has remained stable in the last few years. So, why do you think we have seen that reduction at a local level? Is it because of the integrated pot, or is it just local government taking it and spending it elsewhere? What's going on there?
'I don't know', is the answer. It's just not coming down to third sector organisations. I don't know if local authorities are top-slicing it and just giving organisations a proportion of what they were originally allocating. We haven't seen the drastic issues that Barnardo's have, but we've moved from a Families First fund into local authority funding, with no real acknowledgement of where that money's come from. But that Families First funding, as you said, has been stable, so that is still there somewhere, but I don't know where.
I was just going to say that we've seen a reduction, but I think it might be because Families First criteria aren't as prominent for young carers anymore. So, they've actually named other groups, and that funding has now moved towards those other groups. And there's an expectation within the local authority that the children's services carers' grant will pick it up.
Okay. Rhianon has got a short supplementary.
Basically, you've outlined it. My question was: why? So, in terms of that, some work—. It's different for both organisations, but you just don't have any further spotlight as to what's happened.
No, it just seems to be less of an issue.
Thank you. I think you very clearly laid out the challenges young carers face. Reading your submissions in connection with young carers, I wanted to ask the YMCA—you make a comment:
'There needs to be a national standard for a Young Carers assessment where it links into the SSWA'.
I was quite interested by that. When you say a national standard, are you finding huge variations? And perhaps you could just explain that a little bit more.
Yes. Some of them don't exist in local authorities, and Torfaen seem to be the only local authority that are doing assessments.
Oh, I understand that some are doing it, and some aren't. But when they do do them, are the assessments all very similar? Is there a national standard, or do some just say, 'We ask three questions', and others ask 400 questions?
In Swansea, it's a tick box, on the bottom of an adult carer's assessment, 'Are there young carers in the household?', and there's a tick box. In Neath Port Talbot, they have a single-point-of-contact system, where a social worker will do an assessment, and then pass that information over to Neath Port Talbot. And they're the only two local authorities I know of that have got assessments anywhere.
Okay. And then, I think it's Barnardo's, you make a comment about—you think that
'young carers’ issues are being overlooked, or diluted, with the introduction of a whole population approach'.
Do you want to expand on that briefly?
We've looked at the population needs assessments and the plans within the regional boards. And carers are mentioned, and have to be mentioned, as a part of statutory regulation and guidance. But what's not happening is—young carers' issues aren't necessarily coming to the fore.
Okay. And just very briefly, your views on a young carers' ID card—would that help them, would that give them a passport?
We've got one in Swansea and in Neath Port Talbot. Barnardo's have got it in position in Flintshire.
A Wales-wide one?
We would really advocate for a Wales-wide card. We'd also advocate for it not only being used in schools, but also being used to access leisure services at a discounted rate, but also to access health and health requirements, so health services—for example, being able to collect medication from a pharmacy.
Okay. And if it's used in schools, do you think there's any danger of stigmatising the child? Would any young carer feel stigmatised by it?
We've had young carers' cards in Flintshire for over 11 years, and we worked on those with those young carers. They didn't feel stigmatised—they felt heard and understood.
Great. Turning more specifically to assessment, Helen Mary.
You've touched on some of this already, so I think it's clear that you're all asking for a more standardised approach, a national approach, and, particularly, that needs to pull out the needs of young carers specifically, so I don't need to go through those, I don't think. But Carers Trust Wales has told the committee that there's a lack of clarity about the extent to which assessments include consideration of whether the level of care that's being provided by a young carer is appropriate—so, are they identifying the level of care, and whether, actually, that level of care is okay? Carers Trust Wales tell us that the legislation in England and Scotland is clearer. Is that an issue from your perspective, or how do you think that should be addressed?
So, for me, and for our young carers who we work with, we work towards our own assessment, which incorporates the future generations' well-being Act as well—for the outcome of well-being Wales. So, our assessment asks five questions to identify the level of care that the young carer is providing. And if we aren't the best person to support that young carer, we will refer to either—step up to either social services, or to the voluntary services, or to who that family needs. So, it's not just about the young carer, it's about the family as a whole, so there's a holistic approach. So, I think that, if we are going to be looking at a standardised assessment for carers and young carers, it needs to incorporate the families, and how the person who they're caring for impacts everybody.
And we would totally agree and advocate for that as well.
I think one of the other issues—and I know from talking to young carers, they're very proud of what they do, and they're very protective. So, I think one of the things is they often underestimate or underreport the responsibilities that they have, and the work that they do, for fear that somebody will intervene and take them away. And, sadly, in this day and age, we still hear about, 'Oh, somebody will take them away, and they'll be taken from their family.' So, I think there's also a challenge around getting that right for the young carer, and being able to tease out the things that they do have to do, and the things that potentially put them at risk. And we've done a lot of work a couple of years ago with the pharmaceutical training college, to talk about pharmacists and children collecting medicines, and the risks, and so on. And that's one of the things that they're quite concerned about, saying, because they really feel—, 'Perhaps I shouldn't be doing that.'
Could I ask, Geraint, in your response to that—do you find when you're doing the assessments with the young carers that they're reluctant to actually talk openly about what they really are doing? How do you pull that out? Because if we are going to recommend some sort of national framework, we need to make sure that it takes that into account and that the people doing the assessments—. I suppose the question is: do the people doing the assessments need to be aware of that—to be aware of young carers' reluctance to be honest about what they're doing?
Yes, but it's also about asking the right questions. You're not asking the questions to try and get a big picture of how you can strip the family apart. It's how you can put support in for the family. So, when we do assessments, we have a young person who's doing the caring, and you've also got a family member as well, because we're trying to get the bigger picture. So, you tend to have the family members talking as well. So, it's not just about the one-to-one with the young carer; it's about the whole family thing.
So, it's quite easy, when you're trying to build a relationship with a young person, to ask them direct questions, but if they're questions that are only 'yes' or 'no' answers, then you can get quite an easy picture. You're not asking them to ream off their day-to-day life and what a good day looks like. You're just asking 'yes' or 'no' questions and you can gauge what level of support they need.
That's really useful. Thank you.
Okay. Moving on to support services for young carers—Julie.
Yes, thank you very much, Chair. Could you give us an idea of what sort of support services you feel that young carers do need and the best way of delivering them?
We see a lot of benefit in offering young carers respite support. So, if they are caring for any amount of time—10, 15, 50 hours a week—they need time to be a child and young person. Often, they're propelled into the adult world and adult responsibilities far too quickly. So, we want to support them in peer groups and activities and respite so they can have that time out to actually be a child and do the activities that they want to do as well.
We also see that they aren't getting necessarily the wraparound support that they would need—so, that whole-family approach that Geraint talks about. So, often, it is just a status of a young carer, and, actually, the whole family isn't seen as being supported. That can bring with it issues of discharge from hospital, escalating caring needs that aren't necessarily reassessed or understood and valued, and particularly that the needs of maybe an adult or a child in that situation, particularly an adult that they're caring for, may not be reassessed or may not be looked at by the local authority as needing that level of care and support. So, yes, I think there needs to be a much more rounded picture of young carers' needs within a family context.
And also the peer support with other young carers, because that's one of the things that we've referred to as not—
Yes, it's been vital, really. They can see someone else and hear from someone else that's in the same situation as them. They know they're not alone, they know they've got someone else to talk to, they know that they can spend time having fun activities and not having to explain why they're not in full school uniform, why they've missed school, why they can't come out to play, why they can't access a local club. So, that peer support has been so vital and young carers tell us often that that's the best bit for them.
I suppose, from our point of view, there's quite a lot in what Sarah's saying, but also the support to go into further education or to university. A lot of the young carers that we're working with, who've turned 16, don't ever envisage going to university. There's that massive gap between leaving school, even leaving primary school to secondary school. They have to explain their story again to a new teacher so that they understand, and then leaving school to go to college, they have to tell people again, because there's no mechanism for telling a lecturer that they're a carer. And if they're lucky enough to go to university, there is now a tick box where they can say they are a carer.
But the bigger picture as well of the peer support is that—. I run a youth club every Wednesday as well, in Swansea, but that isn't funded by any local authority or any statutory organisation. It's us chasing money year on year, trying to keep that sustainable. So, every nine months, we're telling young carers there's a chance that this will not happen after Christmas.
And we've had to find philanthropic money and trust funding in the same way YMCA have to keep those activities and peer support going. We're down to bare minimums of literally being funded for assessment and signposting in some cases.
Obviously, it is a struggle to keep that going, but do you think, in fact, the third sector is the best to deliver those services?
I think we have a very good position to deliver those services. We're not a local authority with social workers, so in doing the assessments, they tend to open up much more, they tend to be much more honest, because there isn't that fear that Lynne spoke about of them being taken away from their family.
Yes. And then, finally, how do you see the social services Act has impacted on services for young carers?
Negatively. I think we touched on this a little bit earlier, and I wrote in my evidence feedback, that since 2015 there's been no report of any local authority from the young carers they've identified. The Act came into law in 2016, so they stopped reporting, which I don't think is right at all. So, really negatively, because nobody's reporting it.
And I don't think we've seen an increase in carer numbers being identified, and that really concerns me, because these young carers are out there, and we're probably only seeing and supporting 10 to 20 per cent of them.
Right, thank you. We've covered the resources, I think.
Okay. Dawn, the floor is yours.
Thank you. And I think you have covered some of these as well, but, Geraint, I just wanted to pick up on the stuff you were talking about in terms of supporting schools. You said that the only time there seems to be a recognition is the move from school to university. That's the only time that that is asked. So, are there any instances you've got of good practice in schools where there are questions asked between primary and secondary school about—?
So, Pentrehafod and Hafod in Swansea, they have a very good meeting at the end of the year of young people who are progressing from primary school to secondary school. They ask questions around at risk of being NEET—not in education, employment or training—and low attendance, but they don't ask specifically about young carers. But the education welfare officers do ask if there's a carer responsibility in the household, so they're able to support. Because there's EWO support from primary and secondary schools, they follow the young person as well, but it's very rare.
Okay. So, what you'd like to see is that kind of approach applied across every school setting, then, from primary to secondary school, and that that is identified and followed through.
Yes, because with free school meals, for example, there's a flag system on the registration, so why can't there be the same for a young carer?
So, because there's an application process at each stage, and that could be included in that. Yes, I take that point.
The resources have always been very—Sarah, it was you, I think, raised the issue about respite care. The problem, presumably, then, is that provision has changed or that the funding has reduced so there isn't access to pots of money for respite. Is that the main problem?
Yes, the main problem is funding reduction.
Okay. So, respite is out there and is available if a young carer can actually access the fund or the family can access the fund to get that.
I would say the provision of respite is very varied as well, and the opportunity to access it is very varied.
Okay. And is that something that has happened of late? Did it used to be better is what I'm asking?
It used to be better, so it's a reduction that you've seen. Okay, that's fine.
My final question to you is just around safeguarding issues and whether any of you have concerns around safeguarding issues for young carers.
About 10 per cent of the young carer population that we've supported over the last five years are on the child protection register.
And that's probably low.
I was going to say, yes. How is that dealt with, in your experience? So, you've got somebody that is at risk in terms of their own safety, but they also are caring for the people that are potentially causing—oh my goodness.
I think you need to explain that to us.
So, one of the highest areas of children going into care—the category—is neglect. Neglect is basically the lack of provision for that child. So, if you're a person with severe disabilities or mental health issues, substance misuse issues, and you are struggling, and more and more struggling, to support your child in their daily life, and they're having to support you—we will be seeing increasing levels of neglect, potentially.
So, it's about the provision for the child just kind of going further and further down the list of priorities.
Are children subject to physical abuse in these circumstances as well?
No, not generally.
Not generally, it's just neglect we're talking about.
Yes, there might be neglect factors.
It isn't 'just' neglect, obviously. Okay, I understand. Thank you. Thank you, Chair.
I was just going to say, we also have, obviously, such severe situations where the person's health needs can deteriorate rapidly, so they'll therefore go into hospital, and then be subject to emergency foster care placements et cetera.
Okay, all right. Thank you. Thank you very much.
Okay. Have the provisions of the social services and well-being Act improved that situation or had absolutely no effect on it?
I think it would be very hard to judge, to be honest. We've obviously seen increases in looked-after children numbers, but I can't necessarily say, because they're not identified, whether that's young carers.
Yes, okay. Angela.
Well, actually, I had a not dissimilar question, and I was going to flip it around. Apart from standardisation and consistency of assessments, what else did you expect the Act to deliver that it hasn't?
I think we expected a greater understanding of the holistic needs of a child or young person in that situation and the provision of social care and health services around them.
And would that be better served by having a social worker for the entire situation? Because my understanding is that the carer will have a social worker, the person you care for might have a different social worker, you could have a third person in the household who's got a social worker, so you're then relying on their communication abilities et cetera. Would it not be better to have a social worker who then looks at the whole family holistically and says, 'Right, this young child needs to have some respite. This person needs to go there and this person needs to go there'? And if that is the right way forward, why aren't we doing it? And if it isn't the right way forward, why isn't it the right way forward?
I think it would be valuable to have more dialogue across social workers, to be honest, and for them to understand each other's assessments. I don't think necessarily having a social worker do that singular support to the family would necessarily be the right situation. We often provide family support with non-social workers, so family support workers, parenting support workers—probably trained and experienced in slightly different ways to a social worker, I would say, and that can bring with it much greater benefits for the family as a whole, but obviously liaising with social workers and other professionals within that situation. So, a bit more of a team around the family approach, really, to young carers.
And the problem with just having a single point of contact with a social worker is that, in our local authority, social worker turnover is quite high. So, you can identify an issue within the family and then two months later someone else is coming in, another three months, someone else is coming in, but they're still accessing the same third sector support. So, the answer might not be a social worker but a person who's able to work with the young people and the family members together. So, they're not just child workers, they're not just an adult worker. That would be a better solution for me.
If you did have that team around the family, and I know that some authorities do have teams around the family, but they do tend to be local authority employees, every single one of them, is there a more radical and interesting way that we could look at building a team around the family that actually incorporates the people on the ground who deliver who may be third sector? Have you seen any models anywhere where that's happened, and where there's that real peer-level dialogue and not just, 'Oh, you're third sector, so you do this, and we're the council, we do that' type of thing?
We have seen it and we deliver it. So, we deliver family support services right across nearly 17 of the 22 local authorities. So, often, that is a team around the family approach. We deliver that in Merthyr, we deliver that in Newport, we deliver elements of it in Caerphilly. But what happens is we're actually commissioned separately. So, we're commissioned to run family support, which is Families First funded, and we're commissioned to run a young carers service separately. Where it's different in Newport is we are commissioned separately, but it's seen as one partnership, and it's seen as one approach to family support, and that's provided in an integrated service between Barnardo's and Newport workers. Therefore, that picture can work much, much better for the family. So, if there are disabled children or young people, if there are young carers in the family, there are issues of family breakdown and varying family situations, possibly edge-of-care situations where they may be going on the child protection register and possibly into care, we're seeing a whole picture across Newport of all of those families.
That's really interesting.
I think the Torfaen model, because there is a social worker leading that—. She also has a number of support workers or people that can then help that young person or child integrate into a range of services, and I think, in that case, that works well and I'm not aware that she has encountered a real, 'Oh, social worker'. It's much more about trying to get the best for the child and working with the family. Obviously, she's then in a position to link the people that need care or other members of the family to appropriate services. So, that appears to work very well in that local authority.
Okay. Turning forward to information, advice and assisstance—partially covered, but Rhianon's got the floor now.
In regard to what's already been covered, we obviously understand that there seems to be concern about information and advice that is available to young carers, and bearing in mind the pressures on local government and social services that are very, very apparent, in terms of either commissioning services or social worker turnover and burn-out, how do you feel that this, in terms of the aims and objectives of the Act, can be improved or implemented better? You mentioned pockets of good practice—what needs to happen to be able to fulfil the aims of the Act in terms of young carers?
I think we've seen some positive impact, actually, with information, advice and assistance, from single points of contact and understanding. So, we have seen local authorities where it's actually improved access to services—so they've improved signposting, they've improved an understanding of young carers' situations—but I'd say it's very, very mixed across the board. And if it is just a tick-box exercise, which it is in Swansea, then you're not going to be seeing any advantage to even information, advice and assistance.
So, how can that fragmented and disparate picture across Wales be improved? What needs to happen in terms of fulfilling the objectives of the Act in this regard?
I think local authorities need to be held accountable for knowing how many young carers there are in their area as a baseline. So, all local authorities need to have an assessment of needs, which needs to be done by someone who can do it. Whether that is a third sector organisation that they commission to do it for them or whether that is a social worker within their service that can do an assessment of needs for them, I think every local authority needs to know how many young carers they've got identified and be able to report it to Government.
And I think we should go further than that and we should actually say what's coming out of the needs assessments and what service provision should they be providing at a bare minimum. We've got some services now that can only provide six weeks of support. On average, they need in excess of six months. If circumstances change they should come back in and have the support they need for the duration they need it.
So, in regard to that, what should happen—and the objectives of the Act in this regard—where do you feel the gaps are that need to be filled from local authorities, either with commissioning yourselves or rolling out good practice?
I think it starts in part from a prioritisation of young carers. I feel that that's just dropped and dropped over the last five years. I think the prioritisation of young carers and then the understanding of that would then lead to proper assessments, identification, true figures, engagement with schools, and understanding young carers' needs and then progressing on to, are there actually activities they can access and how can we facilitate that? Because, at the moment, they might be signposted to activities such as Scouts and Guides groups, sports clubs, but even then their access to those, realistically, is quite curtailed.
So, in regard to the Act itself and the fact that you were saying there's not enough priority around young carers, do you feel that that's gone backwards in terms of prioritisation since the Act?
As funding's been cut as well, so it's kind of a—
Okay—it's in parallel.
Yes. Funding comes down and priority of young carers comes down.
Because people would argue and have done that it's in the Act itself and therefore it's all okey-dokey, thank you very much. Obviously, that is not the reality on the ground.
It's in the plans. It's mentioned under carers and young carers are mentioned in the plans, but we're not seeing, therefore, an influx of services or greater understanding and greater impetus to support young carers.
Okay, my final question is around access to language and, in terms of the Welsh language, where does that fit in terms of young carers and the Act?
We provide services in the Welsh language when requested and needed, but I would say in Merthyr, Caerphilly, Newport and Flintshire, where we provide our services, access to the Welsh language can be quite minimal.
Okay. And in regard to other language barriers, particularly in cites, is there provision around children from different backgrounds to be able to get this advice and support that they need via the language of their choice?
Yes, but that requires the organisations that are working with young carers to work in partnership with other organisations. So, for language translation services, we usually use either East or Wolfestone, depending on the needs of the individual. But that's a paid-for service that we have to pay for to support the young person out of a budget that doesn't exist.
We would also say there's probably a lack of identification of young carers within certain communities as well.
So, a vulnerable group within a vulnerable group.
Much more hidden, yes.
Okay. Okay, thank you.
I would say that, certainly, in north Wales, the service provided in Anglesey and Gwynedd and the service provided across—excluding Flintshire—. Obviously, I know that the Anglesey and Gwynedd service is very much led in Welsh, because that's the majority language there. But the other local authorities also have capacity to do—. They're probably more used to and tuned to providing that service than perhaps some of the local authorities in the south.
Okay, thank you.
Good. Gareth Bennett, last couple of questions.
Thanks, Chair. During the scrutiny of the social services Bill there was some concern that the 'all age' approach risked marginalising the needs of children and young people. Is there any evidence of that in the context of young carers?
I would say, as it's moved towards the carers grant, and the carers grant is now being predominantly used for adults and young carers, there's no ring fence for young carers, no proportionality for young carers and, therefore, we have seen a reduction, yes.
Thanks. Do the other two panel members agree?
I would agree, yes.
Thank you. How could the effectiveness of the Act for young carers be improved?
I suppose we've covered quite a lot of those points.
Anything to add to what we've covered?
I don't think so.
Nothing to add to what we've already said, but just to reiterate that putting accountability on to the local authorities would be quite high on my priority list of effectiveness of the well-being Act.
Again, if you can add anything what we've covered, is it possible to separate out the impact of the social services Act from budget cuts? And do you believe the Act could work effectively if services were better funded, or are there wider issues to be addressed?
I'm not sure we can answer why the funding's reduced and whether that's in relation to the Act. What we've seen is, over the last two years, a drastic reduction. Whether that's core budget reduction to local authorities then filtering down—. But the Families First funding, as Lynne stated, has remained predominantly the same, and we've seen quite drastic reductions in the Families First allocation.
I think we're not the right people to ask why the funding's been reduced. There are people who fund us as organisations who decide how much money we get. So, it's probably a question for commissioners more than us.
We've got them later.
I think the issue of the Families First funding is really, really important and I just wanted to ask you: one of the concerns I've had is that the social services and well-being Act has raised thresholds. Do you think there is the possibility that the reason that funding is being diluted for organisations like you is because Families First now is being used much more, whereas, in the past, those families would be involved formally with social services through child protection arrangements?
I think we've seen an increasing complexity of the children and young people and the families we're working with. And we're pronominally working in the team around the family and family support situation, which is meant to be early intervention and prevention. What we are increasingly seeing is edge of care. And Families First is, inevitably, being used, in part, for those services. What we'd advocate for, though, is a good cross-section of support, right across the continuum of need, and Families First being used in a very sensible way to coherently either commission or deliver across that continuum.
Okay. Right, in summary, because we've come to the end of the questions, closing remarks as regards—you've mentioned them already, but in terms of concluding this bit—what you'd like to see, measures, specifically, to improve the workings of the Social Services and Well-being (Wales) Act 2014.
So, for me, it would be, as I've said several times: accountability for local authorities, making sure that assessments of needs are being carried out—whoever it's done by isn't the issue; it's just making sure that it actually does happen—support in schools being improved, so that young carers can actually go to school and have an education and then go further on to college and university; and respite for young carers being improved as well.
We would see—. I think funding has to change; I think the allocation of funding has to change. We cannot continue to provide skeleton services and meet the quality in provision that young carers deserve.
I would say, from talking to the members of the network, they constantly manage on a very small budget, and they do spend a lot of time looking for and sourcing little pots of funding to keep the service going—so, yes, funding.
I think there is a need to have a clear assessment for them to be able to identify, because I think what they sometimes talk about is: when you go into the family home, you're the first person in and you discover a whole range of challenges that are not the remit of the young carers worker, but actually, then, that responsibility falls on them and the service to seek other sources of support for that family.
Excellent. Thank you very much indeed—powerful presentations and good answers and very helpful to our work. Thank you very much indeed, both for your presence and for the written evidence beforehand. You will also receive a transcript of today's proceedings so that you can check that you said the right thing, basically, in the right order. Thanks very much.
Can I say that we'll break for the next witnesses, to come back at 10:30, okay? Thank you.
Gohiriwyd y cyfarfod rhwng 10:17 a 10:31.
The meeting adjourned between 10:17 and 10:31.
Croeso yn ôl i bawb i'r sesiwn ddiweddaraf o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 4 ar ein hagenda rŵan, ac yn dal ar ein trafodaeth ar effaith Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru) 2014 mewn perthynas efo gofalwyr, ac erbyn rŵan rydym ni wedi cyrraedd sesiwn dystiolaeth gyda Chymdeithas Alzheimer's Cymru. Croeso i bawb—yn benodol, felly, Huw Owen, swyddog polisi Cymdeithas Alzheimer's Cymru, Dawn Walters, eiriolwr, Cymdeithas Alzheimer's Cymru, Jayne Goodrick, sy'n gofalu am berson efo demensia, a hefyd Ceri Higgins, sydd hefyd yn gofalu am berson efo demensia. Croeso i chi i gyd. Diolch yn fawr iawn am y dystiolaeth ysgrifenedig a gyflwynwyd ymlaen llaw. Ac yn ôl ein harfer, achos mae amser wastad yn pwyso arnom ni yn y lle yma, fe awn ni'n syth i mewn i gwestiynau yn seiliedig ar y dystiolaeth rydym ni wedi ei derbyn. Felly, mae Helen Mary Jones yn mynd i ddechrau. Helen.
Welcome back, everyone, to the latest meeting of the Health, Social Care and Sport Committee here in the National Assembly for Wales. We have reached item 4 on our agenda now, and we continue with our discussion about the effect of the Social Services and Well-being (Wales) Act 2014 in relation to carers, and now we have reached the evidence session with Alzheimer's Society Cymru. Welcome, everyone—specifically, then, Huw Owen, policy adviser for Alzheimer's Society Cymru, Dawn Walters, who is an advocate for Alzheimer's Society Cymru, Jayne Goodrick, who is a carer of a person living with dementia, and also Ceri Higgins, who is also a carer for a person living with dementia. Welcome to all of you. Thank you very much for your written evidence submitted beforehand. As usual, as time is always a problem in this place, we'll go straight into questions based on the evidence that we have. Helen Mary Jones will start.
Hello, good morning, everybody. In your written evidence—and thank you very much for that—you highlight a large number of carers who refused carers assessments, almost 7,000, in fact, but the reasons for the refusals are not recorded. Do you have any thoughts, any suggestions for us, as to why so many carers are refusing assessments, and should the local authorities be required to record the reason for a refusal?
Well, I am one of those carers that refused an assessment. The reason I refused an assessment was, when the Act first came in, I didn't see the need. I was contacted by letter, three or four times, asking if I—. Because the Act had just come in, there was quite a huge number of people having assessments, or the need was there, and, if it was urgent, they would come out and give me an assessment, but, if not, to contact them later. That was the summer of 2016, when the Act came out, and nothing since—no follow-up to see am I yet in need.
Can I just add to that? And can I just express my personal opinion that—? I am a Welsh speaker—my language and my country comes from my heart—so today my own personal protest is that, because I am thoroughly ashamed of the treatment of the carers I've received, I will be speaking in English today, because I genuinely feel that's a protest, personally, that I need to take today.
In relation to a carers assessment, many conversations—. For example, if you have a phone call that says, 'Would you like to have a carers assessment—I can't come for three to four months—or should I just send it out on paper or over the phone?', and then the carer says, 'Well, actually I need it now', 'Okay, don't worry then—don't bother.' So, ultimately, it's about the conversation that initiates those figures, and are they figures that represent carers that have been offered, but not in a timely fashion. And not just that, are they—? I've also been told, 'It doesn't really do much.' So, the language that we use to represent that assessment, then, would be enough to—. Because a bulk of those figures, a staggering 660-odd, come from my local authority, where I'm 100 per cent sure that it's about the language used to represent those carer assessment opportunities. So, it's not that people have refused; that might be over a phone where they've said, 'We can't come for three weeks', and that represents that.
I think, picking up on Ceri's point of language as well, a carer's needs assessment—. If we don't know what our needs are, how do we know that we need needs? So, it's just a waste of time, unless we know. Now, knowledge is power, and we aren't given knowledge. We don't know what we don't know, and until we are further down the line—. Ceri and I have been carers for years now, we actually know a little bit more—the new carers don't. They're going through the process where I was six years ago, and where Ceri was years and years before. So, it's that knowledge, that information that the carers need to know. Also, a carer's assessment: it sounds a bit judgmental, and they're coming to judge. Are they coming to judge how I look after my husband and my mum? I've got two people with dementia in my family. I've actually got three, but my brother hasn't had a diagnosis—outside of Wales. So, the language is extremely important.
Also, I had no contact with social services prior to my husband being diagnosed, and when somebody mentioned a social worker—and I'm not uneducated, and financially we're okay—I was fearful. It was like, 'Social worker?', and my antenna went up. 'What do I need a social worker for? What are they looking at? What are they coming for? Are they going to assess my care of him and take him away?' Now, this is in the very early days. I realise now how naive that was. The social worker was one of the best people that came into our lives to unlock doors for me, but that lack of knowledge, from somebody who wasn't uneducated, put a barrier up and I was very resistant to that.
I think, as well, speaking to carers, most of it's about when this assessment takes place, because with dementia, it's not a quick fix. I mean, these are years. So, at the time they're given that diagnosis, an assessment is something new to a lot of people and they might not understand how that can benefit them. We've just put a few notes down, why people refuse, and the first thing that comes to mind is that they're deemed as not being able to care for their loved ones—'He's my responsibility', 'He's my person—I should be taking care of him.' Also, they fear that they're going to be taken into care. You know, these are points that are important: fear of financial assessment and loss of assistance; loss of control of personal and home life; don't want to ask for help; lack of advocacy support for carers and cared for, and then they feel a duty to provide. So, all those, really, are why most people will refuse an assessment, and I also think it's the diagnosis of dementia. So, further down the line, the assessment, when it is done, should be reviewed. I mean, how many carers do you know who say, when you say, 'When did you last have an assessment?'—'Oh, three years ago', and advocacy is called in because they're in a crisis point? So there's no intervention of ringing the carers and saying, 'We're here. Can we help you? Is everything okay?' It's intervention.
Yes, okay. Helen.
That's really helpful. So, what you're really telling us is that a lot of those refusals aren't refusals at all; they're people being offered the wrong sort of assessment at the wrong place, in the wrong way. And you also, in the written assessment, talk about people being asked to accept assessments over the phone, and we've heard from other witnesses about people being asked to do their own assessment—basically being given a piece of paper.
Part of our job is, of course, to make suggestions about how things might be improved. So, have you got any suggestions for us about what would be a good way to do this? So, obviously, some of the things you've already said: not just once, because particularly if you're caring for somebody with dementia, your support needs might change as the person's need for support grows. So, have you got some suggestions for us that we could put forward as to how this could be made better?
Well, the carers might have their own, but, for me, it's reviewing. Nobody reviews. That is important—that they're not just left. And each case you have, once they've done an assessment, your case closes—'Thank you. Goodbye'—and then the carers are left to fend for themselves or ring again when there are queues. I've rung in Pembrokeshire. I'm doing Carmarthenshire, Ceredigion and Pembrokeshire. I rang a social worker last week—hefty waiting lists. This person's been waiting since February/ March.
For an assessment?
For an assessment. That's not acceptable.
One thing that—. I know you've put something like £1 million into the training of social services for the Act. The training needs to go a lot further. I think it's in training with the staff to give them the confidence to approach us, to change their language, but when you deliver that training to the staff, take the people that are affected, i.e. if it's for the carer's assessment, take carers in; if it's for an assessment for the people with needs, take those people in with you, because very much—. It's just sometimes the language that is used. You know, 'We'd like to come along and see if there's anything we can to help you' is a much better way of saying, 'We're doing an assessment of needs.' Sometimes, it's as simple as changing the language.
Absolutely. I think also, as an example this week—. I've had what I would call a token carer's assessment for a few years. I'm on my fifth social worker for my parents, for my father-in-law. I'm actually still waiting for the one for my father-in-law, who currently has reached end of life before we've actually had that. But when I actually questioned and said, 'I'd like this to be reviewed, please'—'Well, actually, we write down in our notes when we visit somebody how the carer's doing.' And I said, 'That is not enough.' 'Would you like to speak to my manager?' But the issue is that if that's the manager's beliefs from the manager's beliefs to the manager above them, then, actually, what we are saying is that this is coming possibly from directorate level. And I actually wrote to the director and said, 'This is happening.' 'Oh, we'll work to the family'—there's no element of shame to allowing people to be living like this, to be experiencing these sorts of experiences. So, it almost becomes, 'What's the point of raising it anymore?' I haven't got time, as a carer of 25 years for the family. I haven't got time to be educating managers—I, quite frankly, could. I haven't got time to be doing that, because today is my eleventh day off in 10 years, so thank you for sharing that with me, and that is not self-inflicted—that is because the help that I should be receiving hasn't been given.
Exactly. Huw, sorry, you've been trying to get in.
Jumping to what Dawn was saying at the start there about reassessment, we'd actually like to see this put down in statute somewhere, so a mandatory re-contact point. So, once an assessment has been made, social services go back, even it's to pick up the phone in six months and say, 'How are you? How are things? Do you need us to come out again?' We want to see that, because—
Because it's changing all the time.
Yes. Good point.
So, pro-action rather than reaction, and that goes across the whole of the well-being Act and the dementia action plan.
Just quickly as well, when does the assessment—because it's actually the carers who have to ask for the assessment—. So, at what point, when they've had a diagnosis—? There's no communication with social services. So, it's up to me as a carer to ring social services and say, 'My husband or my partner has just been diagnosed.' And if I'm not proactive and I have no knowledge, then that might not happen for a long time.
[Inaudible.] We in this room know about SPOA—single point of access. The majority of people outside have never heard of it because they've never had to know that. They've never had that knowledge. It's only when you're going through the system you learn what you should have known years before.
Just very briefly from me, the last question from me: we've had other witnesses who've suggested to us—and it slightly touches on the points you've made about the people doing the assessments needing training—that it might be better, actually, if the assessments were undertaken by bodies that are independent of local authorities. So, we've got an example where a mental health charity is doing the assessment. They're being contracted by the local authority to do the assessments for carers of people with mental health issues. What are your views about that, and do you think there might be merit in that kind of approach?
It's my understanding that in north Wales—I'm from the very top of the north Wales coast, in Denbighshire—that we have an outside body delivering those assessments. Certainly, we have an outside body as dementia support workers, and that's working very, very well in our area, because these people—. It's a carers charity, and so they know the language that carers are going to be less frightened of.
I think it depends who it is, personally, because the service is as good as the people.
As the person delivering it, yes.
And also, how would that relate to social services? So, we still need that direct link, but I do think it's a good idea, because it's independent and non-judgmental.
I think, from my point of view, on the policy side of things, it would be a cautious welcome on that. We would need to ensure that, actually, the services that are being offered to people are the same across Wales, so there are no differences. Jayne was saying we want the same services for somebody living in Anglesey as they could get in Cardiff. If these assessments were to be contracted out, we would need to ensure that that was offered, so that if people moved to care for relatives living with dementia or the person with dementia themselves moved, there is the same service wherever they go, and that there's also communication between the bodies as well. So, the body communicates with the local authority, their service, but also other local authorities as well. We would have to ensure that.
That's helpful, thank you.
And that would be in alignment with the action plan.
Good. Dawn, you've got the next group of questions.
Thank you, Chair. I just wanted to pick up something in the written evidence that the Alzheimer's Society has provided, where you talk about
'greater expectation on carers to meet the needs of the person being cared for themselves.'
Can you elaborate on that a little bit?
Sorry, which point? I'm just flicking through—
Sorry, let me find the bit. Anyway, what you've said—I'll see if I can find it—but as I'm talking to you I'll just say. So, what the evidence is saying is that the new system appears to put
'greater expectation on carers to meet the needs of the person being cared for themselves.'
So, presumably by 'the new system' you mean the Act—that you believe that that is putting more of an onus on carers to deliver the needs of the cared for, rather than actually the Act being there as a way of facilitating. Can you just elaborate on that a little bit and perhaps suggest why that might be?
From a carer's point of view, quite frankly, when a social worker says, for example, 'Oh, no, that's not what that's about.' If I can be frank, the treatment that I receive that I consider to be quite poor is in the name of the Act. It's the lack of understanding. So, there is current practice at the moment where, 'Oh, no, you haven't got needs', or they don't identify needs, and then the onus is on the carer, then—it's almost putting an extra pressure on, because the development of the Act was somewhat of a hope, a ray of sunshine for us carers, because not only did we not have to care for x amount of hours, we were actually recognised. But then we've got this Act where—. And I printed off a lot of paperwork representing the Act and actually gave it to the social worker, and he said, 'Oh, I've never heard of that before.' Now, this is really important because, ultimately, as human beings, though I appreciate that carers that are paid are not appreciated enough, when you've cared for family for 25 years, also had a career and then given up a career, people do kind of—. It's a bit of a, if I can call it that, Monty Python sketch where they think, 'Well, you volunteered.' Well, actually, you don't. You do it out of love and care for the family, and what you do find is that in my four days off that I had in the first eight years, you get back and people haven't had their medication, and they've gone without food and drink, because it's as simple as that. It's almost this pressure that's put back on us.
I'll give you a really brief example. My father's a diabetic, insulin-dependent, and my mother's disabled, so unable to administer, and my dad overdosed three times and ended up in an ambulance at hospital. Now, at that time, I was caring for him, and he was refused help with medication because I was caring for him, because we weren't bringing outside carers in. So, we are literally putting the dependent at life and death situations on the shoulders of carers, so it's a case of, 'Don't worry about not identifying that need or offering that support, because their daughter will do it.'
Yes, sure. So, what would you say—? Sorry, go on, Dawn.
I think the social services and well-being Act was brought in to support carers and the people that they care for. That's the reason. It's also a choice, isn't it, because some people want choices? Now, what I'm finding is that some people relish direct payments, and they get on with that quite well, but with that there comes a lot of responsibility. They're managers, really, aren't they? So, carers are not only caring, they're also managing, they're also not getting support from social services due to finance, or lack of it. So, even though you ask for things, it doesn't necessarily mean you're going to get it. So, the social services and well-being Act is turning on itself, in a way, for the carers.
So, what would you say, then, Dawn, following up on that, would be the critical support needs that carers caring for those with dementia actually—
Well, it's choice in a way, but choice—. Carers should have respite and choice, and transfer that finance into whatever care—
So, it's finance, it's respite—what else?
You can't transfer your respite hours into additional care, which might suit some people.
If you can get—it's knowledge, it's about learning. A year ago next week—it's Carers Rights Day next week—both Jayne and I sat in a carers' assembly, and I kid you not what I'm saying today is what we repeated then. There was a panel there; I think there were a couple of directors from Welsh Government. And things have not got any better, but ultimately it's about having more knowledge than the person who supports me from social services, be it a GP, be it a community worker—the lack of knowledge, not just about the Act but about dementia as well is having a huge impact on my life and my family's, and I've educated myself to university level because I've had to to look after my dad. As I said, this was a ray of sunshine with an Act—and when a social worker says, 'Well, no, that's not what that's for', instantly we shut down and say, 'You cannot help me any more.'
So, you're thinking that the Act raised expectations to a degree—is that what you're suggesting?
I think the Act is good, but there's a disconnect between here producing the Act and getting to us at grass-roots level. It's a gap in the middle. You heard evidence the other day about a lady accessing direct payments for gym membership. The only reason she accessed direct payments for gym membership is because I and my husband went for direct payments; we had direct payments to help pay for the fuel for our motor home and campsite fees, because that's respite for him; it gives me a break as well. So, we said to the lady in the next county to ours: 'You can access something like this.' She wanted gym membership, and at the point of the first gatekeeper she was told, 'Oh, no, you can't use it for that.' Well, we knew better, and we went to somebody higher up who said, 'Absolutely that's what the Act is for.' We connected the two; they've given her an enhanced package for the gym membership. So, whilst you're hearing good practice, the reality behind that good practice is meeting somebody who is prepared to challenge it but somebody who knows the information, and we know better than the professionals, which is wrong, because I haven't been trained in the Act.
So, you're suggesting, then, that the Act fundamentally is fine but the people who are responsible for implementing the provisions don't necessarily know exactly how it's supposed to work.
And last week I was in west Wales and was telling this story to a social worker, and the social worker said, 'Will you come and speak to my bosses, please?' This social worker understands what the Act is and has the gatekeeper higher up from her.
And also, I think, we shouldn't forget people living on their own. How does the Act—how do they get to know about the Act, and who supports them? What about the younger people with dementia? Their needs are going to be greater, maybe, possibly.
So, there's awareness raising that's necessary.
Yes. It's layered.
Throughout the staff as well.
Yes. Yes, I've got that point.
I just wanted to ask you one final question, and I think, Ceri, you alluded to it when you started. It's around Welsh-speaking carers and whether you think that support services are meeting the needs of Welsh-speaking carers. I think that's the point you are making right at the outset. Do you want to say a bit about that?
Yes. I think there's been some fantastic work recently with the society, and I know there have been lots of things going on with your colleagues in relation to it and the Welsh Language Commissioner. But it's about—I'll give you an example. I was actually at an eisteddfod, and I had a discussion with a lady and I was having a conversation about my dad's diagnosis. My dad's first language isn't Welsh, but I and my family, my sisters et cetera—it is Welsh. The lady said that the issue was not about being able to talk about your care and being able to have those relationships; it's about the fact that her relative couldn't actually get a diagnosis. So, I noted yesterday—. I took my father to a memory clinic appointment—we call in once a year, just to see how we are—and right in the corner of the room in the clinic is a very small piece of paper that says, 'If you'd like to converse in Welsh, then just let us know.' But the issue is, if the person who you are conversing with doesn't speak whatever your language is, you can't ask that person to converse in that language.
It's about a cultural thing, it's about a heritage thing. My dad actually believes, at the moment, that I am a toddler, so, literally, his memory is back in his 20s, 30s. So, everything that we lived was Welsh medium—the school, eisteddfodau—it was the whole culture. So, it's not just about being able to talk—rightly so, it is about being able to talk to people in your language if you need care and support, but it's also about something that we believe strongly about in Wales. It's about the culture, about the heritage, where my dad no longer feels maybe part of a society. And even though I'm an integral part of a dementia-friendly community group working really hard in Pontypridd, it's about his background, it's about him being part of something. How many of us in the Welsh rugby actually sang a song, even though we might not converse in Welsh? It's about being who you are and it's about being able to be involved in that at a time where people are saying, 'You can't do this and you can't do that.' It's much, much deeper than that.
I disagree there, Ceri, because Welsh speaking, in my area, where I come from, is so important to people living with dementia. And also, I had a lady who I advocated for, and they said she didn't have capacity. When I spoke to her in Welsh, she had perfect capacity. Let's not blot the covers here. She wanted to go home and the social worker wanted to put her in a care home. That lady went home because she had a Welsh speaker. I'm not saying it's in everything, but it's very important.
No no, it's a wider sort of—.
Sorry, Chair, if I can just pick on that point?
Ceri referenced the 'Welsh Speakers' Dementia Care' report we produced with the Welsh Language Commissioner, and a few of you around the table attended that launch. During the evidence gathering for that, we heard plenty of stories where people were undertaking diagnostic tests through the medium of English with a Welsh-language translator in the room. So, they were first-language Welsh speakers, but there was nobody available to give the test in Welsh. That, ultimately, distorts the result, which means that people who speak Welsh as a first language are getting later diagnoses, they're accessing services later, they're accessing services further into the onset of their dementia, which, ultimately, is putting more pressure on them, it's putting more pressure on social services, it's putting more pressure on the local authorities. So, there is a big job here to ensure that people can actually access the tests that they need and the services they need off the back of those results in their first language.
And it's not as simple as just a straightforward interpretation—they don't translate.
They don't translate literally, do they?
The actual nuance of the test is different.
Excellent. I'm conscious of time, so we have to move on, Dawn. Angela.
In relation to the social services and well-being Act, you've already talked a lot about respite and about the inability to get respite. What does it actually say in the Act about your right to respite, and how do you think that might be improved?
Well, I think, quite interestingly, both Jayne and I were part of the document just released by the older person's commissioner on respite. We actually sat on that group, and it was actually quite staggering to find that we all came from different areas, and both myself and the lady who lives in the same sort of area that I do looked at everybody else and thought, 'How on earth did you get that? That's amazing.' But, initially, it's about the belief that we have that you are entitled to it, because we are saving a lot—a lot—of money, we are the majority of care across the UK, across the world. And, ultimately, it's about knowing where we are talking—not about respite, but about prevention as well, and those two words don't come together in any of the support that we get. It's about me saying, after 10, 11 days off in 10 years, that, actually, what I would like—yes, I'd like to be able to earn a qualification that educates me to look after my dad who has got mixed dementia and requires two carers at all times—'Sorry, you can't have that.' What I actually need is training on a hoist, because my dad is fully hoisted and it takes two of us—'Can we have that?' 'No, you can't have that.' So, it's not about us wanting a holiday. I keep on getting e-mails—
No, no, I wasn't—
No, no, I'm just referring to how—
I'm trying to really get to what rights, if any, you have enshrined in the Act. Do you have a right to respite enshrined in the Act, or is it literally just put down as 'access to support' and therefore it's a lot woolier?
Right. Sorry, I misunderstood there.
My only experience of the Act is that Chris has been granted six weeks' respite per year, which equated to a direct payment in our case. We don't want respite separately. He's too young for that—we're not at that yet. It's going to come to a time where I will need a break from him. He will need a break from me. It's not just respite for me, it's respite for him. At the moment we're doing it together and it equates to a set number of weeks. They've given us the direct payment and we use that for what we want to use it for. This is really person-centered. As we go through the years and his dementia progresses, then we will want different things. That's when I will actually recognise the need for a carer's assessment, because, actually, I'll want to know what I can access and what is there for me, in my own right, as a carer.
At my stage, with my husband, he's only—not 'only'—he's in moderate stages yet. He's more advanced—and a few of you have met Chris—than he appears, but at the moment, we're having respite together in our motor home. And that is the flexibility that this Act gives us, but not everybody has access to that wonderful social worker who unlocked it for me.
And the social worker normally offers it when there's a crisis. So, they come in and they say, 'You need respite', because the carer's not aware that they can access it. Also, finding elderly mentally infirm units—I'm sorry, but down in west Wales, finding EMI units to take people with dementia is a nightmare. And that's not fair.
I'm so glad you mentioned that, because it brings me to something I read in your evidence—well, two things. You gave an example where respite wasn't approved for a carer of a person with dementia who was prone to violent outbursts, as the council and carer were unable to fund the respite and—
Yes. They won't take them.
They won't take them.
If they label you with 'challenging behaviour', you will not be accepted. You know, what is that about? We can't manage him.
The challenging behaviour is a direct response from an environmental trigger, such as the attitude of people with them. It may be a physical environment that's not suitable. That elicits a distressed response from the person with dementia. And then it's 'This person has challenging needs. We are not suitable for his or her needs.' And then you get shunted from pillar to post.
And if you're in Aberystwyth or Machynlleth where there are no services for respite in any way, you have to go to Powys or further afield. Who would want respite when it means you're going to have to travel about an hour or two hours. How am I going to visit my loved ones?
There's a lady living in Rhos-on-Sea, whose husband is in a care home in Wrexham. She drives. Fortunately, it's young onset and she has the ability—. Because the place closer to home in Abergele couldn't cope with his distressed response—the distressed response that is not happening at a care home that has different management techniques, different management styles.
I have an 84-year-old lady whose husband is still in hospital. She's waiting. She lives in Meliden between Prestatyn and Rhuddlan. He is either going to go to Holywell or Colwyn Bay. This lady doesn't drive. So, whilst the gentleman is in a place of safety, shall we say, an NHS hospital, that's a different issue. She is under stress. It's 'How am I going to visit my husband of so many years?' She's 84, he's 80—probably he's getting close to end of life; that time is so precious to them.
Okay. Some agility is required now, Angela.
Yes. My last point I wanted to pick up, actually, was your point 3.13 where you expressed bewilderment that self-neglect is not recognised as a form of
abuse in Wales. Can you just expand on that for a couple of seconds?
Huw—was that your plan, was it?
Yes, actually. This is actually something we heard from some of our service staff based in Cardiff. I went up and interviewed them for this written evidence and they said to me that it's something they've seen quite often. There will be a person living with dementia on their own. They will have social services visits, but, actually, because the social services staff are so pressed, they're in, they're out—they're not doing welfare checks. For example, they gave me one very quite distressing example of an older gentleman who was living on his own because his wife had passed away. He had dementia, had social services coming in, I think daily, to see him, was what they said to me. But they were so pressed for time, his particular care worker, they didn't have time to check he'd been eating properly. And so they would come in about mid-morning, check he was okay, make him a cup of tea, have a quick chat, leave again. Through no fault of their own, purely, they said, down to workforce pressures, but, actually, the gentleman had forgotten to eat breakfast because it had been assumed he'd done it. And while there is—. It is an issue.
But that surely, though, is a bad care plan that's been put in place by somebody.
If you've got a care plan—and, actually, nobody gets a copy of their care plan.
In fairness, my husband went two days without eating because I believed him when he said he'd just had a sandwich. And then we realised the ham sandwich was two days before, and it was my 16-year-old daughter who actually highlighted, 'Dad hasn't eaten for two days.' So, that—
As advocates as well, I think what's important is that lots of people living on their own muddle along. Do you know what I mean? Because they're in a little routine. So, once the dementia kicks in, they self-neglect, because, of course, the personal care, the eating, it's not as easy as it would be normally.
Okay. We've really got to move on now. Rhianon, you're in charge of this agility situation.
Thank you. You've already touched upon the relevance of the third sector in regard to filling in any gaps in services in terms of commissioning. So, in that regard, we've talked about that missing gap between the social services Act and its high-level vision, and where we go with that in terms of how that can be firmly underscored. In that gap between service provision—and there have been recent announcements financially in terms of the budget around social care and mental health funding—what needs to happen at a systemic level to fill the gap between your lived experience and the vision around the social services Act, which you mentioned at the time was a fantastic ray of hope to you? I know that's a big question.
It's listening, isn't it? Like I mentioned, last year we were saying exactly the same thing and I must admit a comment came back, 'Well, it's only the first year in this.' It might only have been, at that time, a year or two years in its implementation—that's a year of somebody's life. So, we kind of feel that you're listened to, but you're not always—you know, you're not really heard. And it's also about not—. It's how responsive you are to what we are saying. Don't put another survey out, because we haven't got time to answer another survey—
And nothing happens.
Yes. And we appreciate, another survey—you need to find these things out, but it's how timely people are responsive to the information that carers like ourselves are quite happy to share with you all on a personal level, because, ultimately, potentially, I'm kind of hoping that we will get the support before my father does reach—because he's at an advanced stage, he is—and that is quite disappointing, in a way.
I would say training for the carers as well. Tell us what it is that you can offer and we will be very happy to say how you can deliver that.
And in regard to that diagnosis point—I'll come to this in a second—is that a GP point of contact in terms of signposting, in regard to—?
No, the GPs don't—. In our area, the GPs, you're passed to somewhere else—'I'm not here for your mental health; I'm here for your physical health.' And that was from a GP to a person with dementia.