National Assembly for Wales

Good morning, everyone. In the absence of the Chair, Peter Fox, today, the first item on the agenda is the election of a temporary Chair for the duration of this meeting.

I'm so sorry, I can't hear.

I'm sorry. I'll speak up. We're going to elect a temporary Chair in the absence of the Chair today; Peter Fox is unwell. So, under Standing Order 17.22, I'm going to invite nominations for a temporary Chair.

I nominate James Evans.

Lovely. Thank you. Are there any other nominations? None. In that case, I propose that James Evans is appointed temporary Chair. Any objections? None. James Evans. Thank you.

Good morning, everybody. Welcome to the Health and Social Care Committee this morning. I'd like to welcome our witnesses here this morning. Thank you very much for coming in. It's very good to see you. Before we move on to our evidence session, can I ask if there are any declarations of interest from any Members? There are none. And just to remind everybody that this meeting is bilingual, with a translation between Saesneg and Cymraeg. So, if you'd like to check our translation facility. If you need to use them, we'll just check them now for the witnesses. If you'd like to pop them on and we'll see if it works. Can you hear anybody on the other side? A little voice of God down the phone. Lovely. Great. Thank you. I'll move on to the next item, which is apologies. We have apologies from Peter Fox and Joyce Watson, and we have no substitutes for them today.

We'll now move on to our first evidence session with our witnesses this morning. Thank you very much for joining us. I think, just for the interest of us, would you introduce yourselves? Would that be handy? We'll start with Chris on the end. Thank you.

I'm Chris Kemp-Philp and I have been a carer for 33 years, officially—longer than that.

I'm Judy Russell and I've been a carer for 23 years.

I am Anne Soley. I have been a carer for 14 months.

I'm Kay John-Williams. I work in Bridgend Carers Centre, but I am a carer as well.

Lovely. Diolch yn fawr iawn. Members will have a series of questions that they'll put to you today—. We've got someone online; I do apologise.

Hello. I'm Sue Rendell. I live up in Caernarfon and wasn't able to make it down today. I will have been a carer for 14 years at Christmas.

Lovely. Thank you very much. Thank you all for joining us this morning. As I said, Members have got a series of questions that they'll ask you this morning. If their point has been covered by somebody else on the panel, don't feel you have to chip in, but you can always contribute if you want to. Is that okay? Lovely. My voice is a little bit croaky; I do apologise. We're all a little bit sick in committee this morning. For a health committee, we're all a bit sick as Members.

I'll ask the first question to get us started this morning. I just wonder if you could tell us a bit about your caring role and provide examples of who you're caring for and roughly how many hours a week you provide that care to the individual or people you're providing care for. Shall I start at the end? I'll start with Chris. Is that okay?

My husband was medically retired from the civil service in 1990, and a year later, he couldn't cope, so I gave up my career to become a full-time family carer. I didn't realise that I'd become a carer, because I just stopped working to look after him, but, of course, having lost two incomes, to survive on half a civil service pension wasn't great. He had mobility problems to start with, and he continued to get worse and worse. It was one thing after another. He ended up with heart failure. He had stents inserted. He had a pacemaker inserted. He had cancer. So, there was a lot going on.

Because he had no immunity, I had to literally not have anybody come in during COVID. And for the last five years, basically, apart from going to a hospital or going to a medical facility, I didn't leave the house, because if I'd have gone out, I could have brought something home. So we spent five years literally avoiding people. The experience was unpleasant. I had two great-grandchildren born in that time, and I only saw them on video. That was basically me.

Thank you, Chris. Judith.

When I moved back to Wales 23 years ago, I began to care for my mother. It started off as just taking her for hospital appointments, dental appointments, and, gradually, the responsibility grew more and more over the years. I also care now for my husband, who has Alzheimer's. I'm guardian for my sister, who's mentally handicapped. I also spend at least six hours a week cooking for my sister-in-law, who is unable to do things for herself. So, it's quite a responsibility. My life is taken up with caring.

I didn't actually know I was a carer. I cared for my mother because she was my mother. I looked after her. Of course I did. And it wasn't until about three years ago that I identified as a carer, when I joined the Bridgend carers group. I so wish that that had been available to me a long, long time ago, because all through these last 23 years, I've had to fight and struggle to find things out—what questions to ask, who to ask, where to go. There's very, very little help out there.

My mother had to pay for her own care, which wasn't great. People would come in twice a day. It wasn't a good situation at all. I don't get any help with my husband at all, apart from support, again, from the carers group. My sister, fortunately, is in assisted living, so she is very, very well cared for by Cartrefi Cymru. I am just there as her guardian to do whatever needs to be done. And that's me.

Thank you very much. Anne.

I'm a carer. I'm of French origin, living in Wales for eight years with my British husband, and I am also British. I knew Kay, and when she saw my husband, she realised that he had dementia. She advised me to join the carers group, which I did. Three months later, he had a stroke, and he has lost all his memory and language. He's mobile, but he can't speak, he can't read, he can't write, and he was a very knowledgeable man. When we came back to live in the UK, I counted on him, because he knew all the network. I did not. He was also my mobile dictionary when I had a problem.

I have to admit, I was a little bit lazy to make a network around me. So, from one day to another, 14 months ago, everything stopped and I had to deal with it myself. Luckily, I can reason, so I went to ask for help from the carers group. And I am ever so grateful, because they gave me the possibility to do what I had to do. I was more confident then. I was afraid not to be able to understand sometimes, especially on the phone—everything is done on the phone today, and it is quite difficult when English is not your first language. But I manage.

But the only thing is that I care for him for 24 hours, because something that is evident takes hours to explain, hours to guess, and now we manage to have a sort of understanding. The problem is he's very frustrated, so he has changed his attitude towards me. First of all, he is a very independent man, and he thinks I am controlling him, but I am just trying to understand him. We built, with help, a sort of understanding. Now, I can ask questions and he can say 'yes' or 'no', because 80 per cent of his faculties are there, but he can't speak, he can't write or hardly read. He used to be a poet, he used to know a lot of songs, he is a very knowledgeable man and everything is gone. So, that's hard.

He is frustrated, definitely, and that's why he has changed his attitude towards me, but I feel frustrated because I lost my husband who is still alive, and I have to love somebody else I really don't want. It is hard because I am not part of his life anymore, he lives in a bubble, and the fact that I am not a part of his life is hard. But, as we all say here, we do everything for love. If we had not done everything for love, we would not be here today. 

Thank you very much. Thank you for that. Sue. 

Can you hear me?

Yes, we can hear you fine. 

Thank you. For my husband, in 2008, things appeared different. In 2010, we did a long trip abroad, and he couldn't adapt to driving a big camper van. He kept throwing it round roundabouts, so I took over the driving. He was a man who'd worked with maps all his life, but he couldn't read the map anymore. So, we knew something was afoot. Then, in 2012-13, at Christmas, he had what ended being up a stroke. 

At first, they called it vascular dementia, but now, they call it vascular parkinsonism. If you Google 'vascular parkinsonism', it makes sense, because his bottom half doesn't work very well at all, but he has no tremor. His situation now, 14 years in, is that he's doubly incontinent. We can still just about do transfers. I hug him and move him from one place to another. And he's non-verbal. But he knows what's going on. If you give him a choice between two things, he can identify which he wants. 

I can understand what the other carers have said. The person has gone, basically. Last night—being an older carer, this is what happens—I was looking forward to this session, because it's an opportunity to try and make a difference for people who are in situations that are much harder than mine. Money is not a major issue for us. We live in a nice house. The house is adapted for everything I need. But, last night, his knees went, and the carer and I just managed to get him into bed, and the same this morning. So, I'm sitting here waiting for a doctor to call to find out what's going on. And you go in in the morning to see if he's still breathing to be honest. We're at the later stages of his disease, and it's physically demanding, it's mentally demanding, and it's administratively difficult as well, dealing with all these different agencies and carers' groups and all sorts of different people. It's just very wearing.

I've tried to get respite and there is nothing available, I'm told, in Gwynedd or Anglesey, for his particular needs. We were told that he needed nursing care, funded nursing care, they call it, of £225 a week, but that only comes from the NHS if he's in a private care home. It doesn't come to me; it doesn't go to the hospice. We managed a week in a hospice earlier in the year. They don't get it either. And I do the nursing for the other 50 weeks in the year. And in terms of hours of work, I'm on duty from 7.30 in the morning until the carers put him to bed at about 8.30 p.m. But I was up last night to change him in bed at 1 o'clock, and it's difficult to go back to sleep after that. I'm just shattered.

Thank you very much, Sue. It's been raised already, some of the challenges that you face on a day-to day basis—I know that you've raised them, and quite a few of you have talked about those. Are there any other challenges that you're facing on a day-to-day basis that perhaps haven't been mentioned yet? Chris.

I've got one that is, to my mind, really important. On 24 December last year, my husband started to feel very unwell. He had a pain in his leg. There was not much I could do on Christmas Day, but my GP saw him on 2 January this year. The doctor didn't get out of his chair. He just said, 'Oh, take some Oramorph for the pain.' When I went to the pharmacist, I said, 'Should he be taking Oramorph with his tramadol tablets, because he's on a lot of medication?', and she said, 'No, that doesn't sound great.' So, a couple of days later, I took him back to the GP and saw a different GP who got up, had a look at his leg and said, 'Stop taking the Oramorph; take some extra tramadol.' Towards the end of the month, 24 January, I asked for a home visit, because he hadn't been able to get out of his chair. His mobility was quite limited beforehand, but he was literally sleeping in the chair, and I had to put him on my walker to wheel him to the bathroom, because he couldn't get as far as the bathroom. So, they did a home visit and said, 'Ah, he's got an infection', and gave him some antibiotics. Now, as it turned out, luckily, on the thirty-first, I had to take him to the hospital to have a blood test, because, with his heart problems, it was affecting his kidneys. So, we had the blood test on the Friday afternoon. At 10 o'clock on the following Monday, I had a phone call, 'Please get him in to hospital immediately. His kidneys are going and we need to do something.' So, we spent three nights in the medical assessment unit and eventually went on to a ward. But, we were lucky: in MAU, they realised that he'd had a thrombosis in his leg on 24 December, so that was that problem not sorted, but he was then given medication to try to break the clot up.

On 7 February, he picked up norovirus on the ward. So, that wasn't pleasant. There were a lot of problems between the doctors, saying that he needed an MRI, he didn't need an MRI, he was going to have it the following day, he wasn't going to have it the following day. By 14 February, he had literally had enough and was demanding to be let out. I wasn't terribly keen, because my mobility isn't great and, at that point, he couldn't stand, he couldn't walk and he had galloping diarrhoea as well. So, it wasn't to me an ideal situation. Somebody from discharge came down and she asked me if I needed help at home, and I said, 'Well, I certainly can't manage with him as it is. We've been managing while he could walk.' They discharged him on 14 February. He couldn't walk, couldn't stand. They put him into the car in a wheelchair, and I said, 'How do I get him out at the other end?' And they said—. I mean, they didn't say, 'Your problem', but they said, 'You'll have to do something.'

So, he became quite poorly again. I called the district nurses in, because they'd been coming to change his catheter. He had a suprapubic catheter in; he was getting a lot of infections through that. They called their supervisor and the supervisor called a doctor. The doctor said, 'He needs to go into hospital. If we ring for an ambulance, it will take an awfully long time.' So, he put my husband into the car. I drove him to the hospital. I went in to try and find a porter; there wasn't one to be found. So, about an hour or two later, a nurse came out to try and take him into MAU again. She had to go back and get another nurse, because they couldn't move him on their own, which I'd been having to do. And he ping-ponged back and fore to what I'd said were three unsafe discharges, because he was still in the same state.

He was eventually taken into the Grange, after the third time he'd been sent home. They stabilised him and sent him to the Royal Gwent, and he was in a final ward in the Royal Gwent until 30 April. I'd been asking since March for an updated carer assessment, because my caring role had changed considerably and I wanted some help. Every time he was sent home, nobody came to help at all. And at that point, I was less worried about infection and more about keeping him safe. And, as I say, he went in for the last time and he passed away on the 30 April this year. And, as horrible as it is to say, I was actually relieved, because he was in so much pain. He hadn't eaten since December. I thought that he'd been really badly treated, and I'd been getting so upset that, on one occasion when they'd sent him home and they decided that they would do the MRI, I brought him back in, and I basically said to the people there, 'I can't cope at home. I'm going to leave him in the corridor', and that was a horrible thing to say. But, again, two people came down, put him in a wheelchair, put him in the car, and let me take him home. So, it was just—. The last four months of his life were dreadful for both of us.

Thank you. Thank you very much for sharing that. I know it's quite difficult. Kay, did you want to say anything?

Just the same stories. You'd want to think that it would be one person, and that was so awful that you went through that. This is what we're hearing. 

All the time.

The same stories, the failed discharges. And what I'm aware of, when somebody has to fight so much to keep that person as safe as they can, how can they ask for anything for themselves? There's nothing left to ask for anything for you. There are no ongoing carers assessments. Once somebody has a carer assessment, it's almost that the box has been ticked.

They came back to me the day after he died to offer me an upgraded carer assessment.

And, Judy, you didn't have a carer assessment, or you had one, did you?

I had a carer assessment earlier on this year and there was nothing that they could offer me, quite frankly—nothing at all.

Lovely. Does anybody else want to comment on this point? No? 

You didn't have one either, did you?

No. I feel very lucky compared to others, but I am also here to talk about all the carers and to be supportive to all the carers, because some are afraid to talk and I am not afraid to talk. So, it's just that I have compassion and it's just awful and it's just unbelievable.

I'll bring Sue in quickly. I know she put her hand up.

Yes, a lot of our discussions are about the cared-for person, but it's the person who cares who needs to look after themselves as well. I watched my mother look after my dad, who had proper Parkinson's disease for maybe 15 years, and—. Is it okay if I show you a picture, Chair? 

Yes.

This is how my mother ended her life; this is what she looked like towards the end. It speaks volumes to me, that mouth and those eyes, and not only is it what happened to my mother, but it's what happened to my sister—my sister painted that picture—and it has an impact on the rest of the family as well. And there are so many of us out there, variously between 310,000, I think, to 458,000 in Wales I've seen figures bandied about, and we're bystanders, if you like. We're expected to pick up the pieces when all these helicopter people, like doctors and district nurses and physios and occupational therapists they come in and they fly in and they tell you what to do, but we pick up the pieces afterwards. And there is no respite for me; the carers that I've had morning and evening for the last two years have been pretty good, to be honest, on the whole. And my carer assessment, which I only asked for last year, 2023, nothing happened. Earlier this year, I got a line in my husband's care plan that says, 'Mrs Rendell needs some respite.' So, a couple of months ago, I said I wanted an independent carer's assessment for me, please. And they came out; the woman comes out quite readily and has a nice chat. But, as the others have said, nothing much happens after that. I did get two two-hour sitting sessions, which have been a godsend. And I couldn't have done this work, talking to people, without them, to be honest; it's just given me that little bit of energy to be able to contribute to things like this. But it's 365 days a year, and I just can't do it without a break.

Okay. Thank you very much. And—

I think—. Sorry.

That's okay.

A lot of carers, people who become carers, they take their loved ones to have their assessment with the psychologist, the doctor, whoever. My mother was diagnosed four years ago with vascular dementia, and that was it: 'You've got vascular dementia. Off you go.' My husband was diagnosed two years ago with Alzheimer's, and that was it; we had a diagnosis of Alzheimer's. There's no offer of help; there are no directions to find help, for somebody to point you to, 'You should be doing this, you should be doing it. This is available, that's available'—nothing. You're on your own, completely.

Okay. That probably brings on to our next set of questions. I'd like to bring in, now, Lesley Griffiths.

Thank you. Good morning. Thanks very much for coming in. It's really powerful to hear your experiences and your lives, so thank you for sharing that with us. I was very interested, Judith: you said that you hadn't identified yourself as a carer until three years ago, and I was just wondering if, at any point, any of you have been identified as a carer by whatever service. So, I hear you talking about carers assessments that don't take place, but I was just wondering at what point did you identify yourselves or were you identified by an organisation as a carer?

As far as I'm concerned, three years ago, I was looking for a choir to join. I felt I needed something outside of looking after my mother, and I heard about the Bridgend carers, so I went along to enquire about the choir, and suddenly this door was opened and there were these other people who were in exactly the same position as I am, where I didn't have to explain myself to them. They know; they're going through the same things I am. And because of the title of the group—carers' association—and I thought, 'Well, yes, that's what I am.'

I basically had the same experience. I gave up my career in 1991 and stayed at home to look after my husband. During that point, I also had to look after my mother, who had big mobility problems, and then she got lung cancer, and she'd been looking after a friend who had dementia. So, I was basically sandwich caring between the three of them, and it wasn't until I took her friend to a dementia cafe that somebody came in and gave a talk, saying that they were setting up a local carers group, and I thought, 'Oh, that would be nice, if I can get an hour out of the house to go to something.' I joined as a founder member in 2010, which was when I realised I was a carer.

So, for 10 years, basically, I hadn't realised I was a carer, and there are complications from that. Because I hadn't realised I was a carer, I wasn't claiming carers allowance. We were living off his half civil service pension. That was all we had coming in. And because of that, I had 30-odd hours towards my pension. They've changed it to 35 hours. So, I don't get a full pension because, for the 10 years that I didn't claim carers allowance, even though I was caring, I'm not credited. So, I've got something like 33, 34 hours. I get almost a full pension, but not quite.

When I queried that with somebody, they said, 'Well, had you gone into a jobcentre, they would have told you about carers allowance.' Why, if I gave up a perfectly good position, would I go into a jobcentre? It wouldn't have crossed my mind.

I was never identified as a carer until I joined a group of carers. As you've just said, the peer support from another group of carers, if you just go for a cup of coffee for an hour, they know the problems you're going through. They might not have the same problems, but somebody will know somebody who can help you. They helped me tremendously. I said in the Senedd a while ago that they saved my life in 2010 when I joined them. And they did. They genuinely did through the peer support.

This is what we find with our group, that new people, new carers who are coming through, they're on the same journey as we started off on. They don't know the route, and we are now able to help them. It's fantastic, because we've saved them a long journey to find out these things.

But it shouldn't be like that, should it?

No, of course not.

So, when Chris said that somebody had said to you, 'Well, if you'd gone to the jobcentre,' as you say, why would you go to the jobcentre, because you're not looking for a job—

It didn't cross my mind.

—and most people think that's what the jobcentre's for. Which agencies or organisations do you think should be signposting you and should be helping you?

I think the GP should have picked it up straight away.

I wanted to say that, because, going to the GP, they don't tell you anything. I have to ask them, and then they just leave me with nothing—no suggestion, nothing. And after 10 minutes, they throw you out, which is not—. What I also want to say, with all that, is it's also moral support we need, because, first of all, we are stressed. We are lost. And a lot of carers have lost their friends, and that is just unbelievable for me, because I realise that society's not there for them, there is no compassion there.

I also did not know I was—I am—a carer. I looked after my parents for 10 years and never asked myself, because it is obvious we will do that. I insist on the term 'love', because without love, we are all dead. It's not only love, it's also community. Without a community, like the Bridgend Carers Centre, we are lost. We need a community to support us, to help us, to guide us, and that is really, really necessary.

I also want to add something, which is, for the people who have lost their loved one, like you have, we still need the structure to be able to grieve in a balanced way, and to be guided again, and also supported by the other carers. I found more confidence within myself, because I was able to talk to people and to realise, first of all, that I am not the only one and, secondly, there is far worse—far worse—than my situation, and I am flabbergasted that there's no help, nothing. It's just—. And so, I said to myself, 'Well, take day after day and just take the most and try to go outside and to laugh', because we also need to laugh, we need something to say, 'Ha', we just—. We just—. I don't know how to say it.

You said it beautifully.

Lesley, I think Sue wanted to come in.

Yes. Sue.

Yes. When my husband came out of hospital in 2012-13, I was deluged by visitors, people from different agencies with lots of forms, leaflets and things like that. But I was—I don't know what you'd call it—punch-drunk, you know, trying to get to grips with this new job that I had to do, because, after a stroke, obviously, he was quite disabled, so that I couldn't conscience reaching out to people, if you like. And I did it on my own for—well, until 2023. My husband had a burst appendix and went into Ysbyty Gwynedd, and my health was declining, largely from stress; I was eating too much and I was probably drinking too much, just to get through the day, and I said, 'I can't deal with him at home on my own, I need carers', so carers came in morning and evening.

But, all the way through that process, I felt alone but, at the same time, I felt that I didn't want to sit with a load of people who were sharing their grief, if you like, and it was only in the last six months, I suppose, that we ended up going to a class that is called 'dementia active' in Gwynedd, and it's the sort of thing I wouldn't have looked at, because he doesn't have dementia. There are some characteristics of Parkinsonism that are similar, but there isn't a thing for Parkinsonism. But, having said that, the Parkinson's nurse is the only person who's actually sourced a week's respite for me. But she doesn't run groups; it's the dementia people who run groups.

And over the years, I've Googled things, I've looked at the Carers Trust website, and there was nothing, it seemed, appropriate for our situation. There's the short breaks scheme, which is all well and good but doesn't provide any care for the cared-for person. There's carers outreach around here and they meet once a month in a nice restaurant, but you can't take your cared-for person with you to that one, and that's no help to me because if I leave him sat in the chair—. I used to be able to leave him for several hours and he'd just sleep in the chair, but, now, he slides down. I went to Tesco a couple of weeks ago and I was out for 20 minutes, if that, and he was on the floor when I got back.

So, this new group has now referred me to another dementia group, which is fantastic, because we all sit with the cared-for and have a sandwich lunch and then we split and somebody looks after the people who have the disease and the carers all go into a separate room and talk about the things that the other people on your panel have been talking about, and it's been really useful. And I now understand the value of just sitting with people who know and I've probably missed out on that for all these years, because (a) the group didn't seem appropriate and (b) it just didn't appeal to me.

Lesley, going back to your original question, it would be very helpful, if, when one saw the consultant who gives the diagnosis, they had some sort of pamphlet that they could give you and say, 'Well, these are some organisations that you should perhaps contact.' We're used to fighting for things. So, if they say, 'Yes, the responsibility is on you to contact them', that's fine. We all do that anyway, but we don't know where to go. We're just left with that diagnosis and we have nothing else. We don't know what to do.

So, you've mentioned GPs, you've mentioned the consultant, what about the councils, the local authority, your local council? Do you think you should get any information from them or assistance?

But how would we know that they have got the information to give us? 

How can we meet them?

But do you think they should be proactively engaging, maybe with organisations like yours, Kay?

Well, they do. But who tells the person that they're actually a carer? It's that, isn't it? Some people don't want to be a carer, and the word frightens the life out of them and it takes time to accept that, when you're a carer, that's long term. Who tells somebody that? Because people—. We've got two GP surgeries in Bridgend county who refer to us, and the people come to us and we actually tell people that they're carers, but should it be done before that, within the diagnosis? Who's looking at the responsibility of that, I suppose?

My local council had carers connectors, but that was deemed to be unnecessary, so they were converted to community connectors generically, so that they helped other people. Now, it's fine, as somebody just said, if you know to go to the local—

Council. 

Sorry.

Council. 

Council. Thank you. If you know to go to them—. But I didn't know. I wouldn't have known until I joined the group and they came to give talks, and then you get given leaflets, which you can follow up.

The council wouldn't be your first thought.   

It wouldn't be my first thought.

No. Which was your council?

Newport. 

Newport. Okay. 

I tried to talk to one and the answer was 'I just don't know.' So, you see—. But I phoned, I did not see the person. I think it is quite hard to be in touch with them. 

Yes. I think you've all mentioned that as a carer you need support, you need moral support. Sue was just saying how stressed—. And I'm sure stress is obviously, unfortunately, a massive part of your daily life. So, again, who supports you? What support do you get? I think you've already referred to a bit of this. When you do get support, what would be the best support? Have you ever had that? Or is there anything you can tell us that you think would be the best support for you?

That's another discovery isn't it? 

I haven't had any support at all. 

You don't even know what sort of support you want. One of the things you find when you get a diagnosis is that your friends drop off. Your friends don't know how to address, how to cope with this person, who's the same person but not. I find it all right, because I grew up with a mentally handicapped sister. My mother cared for my sister until my mother was 80. She had her living at home. She had no support at all. Nothing. But, you know, your friends—they don't knock on the door anymore, do they?

It's not even just that. It makes you so unreliable. You can't make plans, because I never knew until he woke up whether he was going to be functional or completely needing my care. So, I literally couldn't plan a day ahead, and people stop inviting you to things if you don't turn up.

I think Sue wanted to come in.

I've found that the most useful advice has often come not from professional people. I was struggling to get my husband in and out of the car, and my youngest daughter reminded me that in hospital they use a slide sheet. This little piece of fabric that cost £10 has been an absolute godsend, but that came from my daughter. My daughter advises carers and does carers assessments in Warrington. They have a central community hub and she organises regular meetings for carers there. They get referrals to do care assessments, but I'm not sure that anything like that happens around here. The other thing was that his knees went once before, a couple of years back, and my other daughter is an ex-physio and she came rushing over with a rota stand thing, which none of the physios or the OTs had told me about. The physios and the OTs have to go through so many bureaucratic hoops.

We ended up with a hospital bed not so long ago, and he came out of it at 3 o'clock in the morning. I went to check on him, because I'd been to the bathroom myself, and I couldn't find him. He had come out of bed, on the floor, hit his head on the caster, rolled underneath and was tangled in the wires. Obviously, it was an ambulance job to sort that out. Come the morning, I asked for bed rails, and I was told, 'You can't have bed rails, because it infringes on his human rights.' For God's sake, tell me what that is about. We'd had a bed lever, as they call it, but on this new bed they needed a different one. It was two home visits from the OT and a 10-page risk assessment document just to fix a bed lever. It just doesn't make sense at all. The only reason my husband stays in bed now is because I've jammed it up against the old bed that we had, and he can't get out. He doesn't try to get out, the only thing he does is roll to one side, but they wouldn't listen to that. 'No bed rails, it's human rights', or possibly an entanglement risk. It's just hard work getting through these things.

Thank you, Sue. My final question—and some of you have already referred to this, so don't feel you've all got to answer if you think you've covered it—was around carers' needs assessments. You've just mentioned it again, Sue. Is there anything you want to add about carers' needs assessments and how you got one? I think a couple of you said—. I can't remember which one, but I did write down that one of you asked in 2023—I think it was you, Chris—but you didn't have it in 2023, you had it quite recently, et cetera.

It was March this year that I said my caring needs had changed considerably and that I needed some additional help to cope.

And did that happen?

As I said, they telephoned me the day after he passed away, on 30 April, to offer me a carer assessment. Going back to the beginning, I didn't know I was a carer from 1990. In 2006, we moved into a disabled adapted ground-floor flat, which was hugely helpful. I asked for a carer assessment then. After badgering for quite a considerable time, after I met the carers group in 2010, I got the my first assessment in 2018, and that was after an awful lot of badgering. As you say, there was nothing that they could do. Also, in one of the hospital reports, one of the discharges had been sent to my GP, and my GP was laughing when she showed it to me. It said, 'The wife is not coping at home'. That was on the discharge note. I had been going into the hospital every day for three months on my walker, because I need it to do any distance, and they still thought it was perfectly okay to send somebody home who couldn’t walk as well.

Even though they said you weren't coping.

The fact that they put that on the hospital report proves that nobody is really taking any notice of what's happening.

Can I say one other thing? After I'd got over all of this, and I'd been saying in the hospital, ‘I’m perfectly willing to care, but I'm unable to care due to my own problems’—. In the 2014 Act, it says that carers have to be willing and able. I haven't found anybody at all who can tell me who I would go to to say, ‘I'm willing but not able’. I said that on every one of the three hospital discharges. I said, ‘This is an unsafe discharge. I am willing to look after him, but physically I'm unable, and I need help’, and nobody has been able to tell me who I take that to. Although I have the legal right to say ‘no’, going back to human rights again, I was told that he had capacity, so my needs were overridden by his capacity to want to come home. And that was a huge problem.

I think Sue wants to come in quickly.

In terms of carers assessments, when I—earlier this year, only a month or six weeks ago—asked for a personal carer assessment instead of this one line, the social worker came out. She comes out very regularly and chats. I've had an Age UK dementia advocate who's been assisting me, but the advocate is for my husband, not for me, apparently, she says. It's through dementia again. The three of us met, and the social worker had drafted something. There was no particular pro forma for a carer assessment, it just had at the top a form that said ‘what matters to me’, and to be honest it was so rambly and poorly written that in the course of the discussion I said, ‘I don't wish to be rude’ to the social worker, ‘but would it help if I drafted my little bit in the middle about how it affects me?’ She said, ‘Oh yes, that's no problem, that would be quite good’. I said I'd looked at the Carers UK and Carers Wales websites, and they give some good guidance about what should be in the carer assessment, so would it be okay if I followed the guidelines there. She said, ‘Oh yes, that would be great. Perhaps I could use it for my next ones that I have to do’. And I thought, ‘You're the professional person who's supposed to be helping me’, but I felt like I was advising them how to do their own job. As the others have said, it's a paper exercise.

A tick box. Thank you, Sue. 

It takes so long for a carer assessment to be done. As soon as we see somebody, we refer for a carer assessment. That can take eight or nine months, and then when they come out, the carers then say that they’re just referred back to us. They can't get a social worker until they have a carer assessment—that's the block. We've had carers putting in formal complaints, but it hasn't made any difference. So there's something wrong in that system. They can't get a social worker—

It's very different up here. The social worker comes out quite quickly. You have a lovely chat—

So we've got a bit of disparity.

Judith, do you want to make a quick comment? I'll bring Mabon in then.

I was just going to say that, as carers, we save the Government millions and millions of pounds. I asked for some help this week, actually. I'm 258 on the list for a hip replacement. I don't know how long that's going to take. I asked the doctor, 'As a carer, couldn't I possibly go up the list a little bit?' 'No, we're not allowed to do that'. This is the only thing I've ever asked for, but nothing.

Thank you. I'll move on to Mabon now. Mabon will probably ask his questions in Welsh, so you can use the translation if you need to.

Who'd like to start on that one? Chris.

There is no such thing as a normal life for a carer. Like the lady sitting next to me, I'm waiting for a knee replacement. They said I've been 108 weeks on the waiting list. I've been called to two hospital appointments to talk about it. One was a pre-op admission, and I'm trying to think what on earth I did that day—. No, this is more recent—this is after he passed. But I wouldn't have been able to go to appointments myself because I would have had nobody to stay at home to care for him. I don't know; it's a difficult question to answer because I genuinely don't know what I would have done. There was nobody to step in and help. It was 24/7 for five years. I just didn't do anything else.

For me, I would just not go. That is the problem. Because I would be so anxious to leave him. The problem is, when you don't have any family to help you, or a friend to ask for that—. Certainly not to go away for two days—that is out of the question. Now, I know I am here. My husband is at home and I just take a chance and I'm praying. Just that. It sounds stupid but I think, for me, it's important to be here, to help others and to help to make the system change or evolve for us, for the people. We are just the people, and, don't forget, we are paying taxes. We are contributing for everything and we have nothing. So, it's hard. For that, for just what you mentioned, it's just appalling.

Does anybody else want to come in? Judith or Sue? Kay.

People don't go for their appointments.

They just don't go at all.

The longer they care, the more invisible they become. They're invisible. We've talked an awful lot today about the cared-for. Carers become less and less able to talk about themselves, or to talk about their needs or their health. Within the groups, we do bring this up always, and it's quite a shock to them when they realise how invisible they are.

It's just too much effort. And I only do it when things are really hard. I've ended up, because I'm overweight and whatever, I've ended up purchasing—. One of our most senior doctors in Hafan Iechyd surgery in Caernarfon has left, and I go and see her for private Mounjaro jabs, because I need to get fit. I need to be better in my own health in order to carry on doing this job. So, yes, I've ended up doing that, and it helps a bit. But why can't I go to the surgery and ask for this? So, I can't, anyway. Yes, very difficult—don't do it.

Mabon.

Who would like to start on that one?

—for anybody who's getting older or who's dealing with a care situation. A broad strategy that explains what happens. When kids go to swimming lessons, they work up through the badges, and I want something that tells me, when you're an able carer, this is what happens. When things get a little bit worse, we're walking the other way, this is the structure of help that you can get, and where to go for it, rather than having to fish around everywhere.

Anybody in the room want to add anything?

Communication, isn't it? We need people to communicate with us. We shouldn't have to go out and find all these things; it should come to us.

Chris.

It goes back to the beginning. Somebody needs to tell you that you're a carer, if you don't know, and it goes back right to the beginning. When your GP sees you looking after—in my case, at one point, three other people—he or she should have been able to tell me that I was a carer and that there were things that I could do to help, and that never happened.

And I think, also, moral support is very important, as well, to keep the Bridgend centre going so we know, at least here, we feel safe and we know there is a place. That's very important. And also I think it's important for people to tell us that it's also important that you keep your health or you keep fit and you take time. And I know that I wake an hour before—. I get up to meditate and to be on my own for an hour before the journey starts. That's important.

Lovely.

Can I just say that the one thing that kept me sane from 2020 through to this year was that Carers Wales put on what they call 'Me Time'? And they are sessions that come up a couple of times a month, where you can join on Zoom or on Teams, whichever, and they put on a range of topics. Giving information, having some mindfulness sessions—there were some brilliant mindfulness sessions—even a quiz or something so that you can just see other people. I was at the Senedd for a reception a while ago and—. I've forgotten what I was going to say. I have completely lost the point. I'm sorry. Ignore me.

That's okay.

You can come back to that.

You can come back to it. It's fine. I'll hand over for our last set of questions now, then, to John Griffiths.

Diolch, Cadeirydd. And thank you very much to all of our witnesses for coming into committee physically or remotely and sharing your circumstances and experience. As Lesley said, it's very powerful to hear from you first-hand.

I have questions on respite care and breaks, but you've really covered an awful lot of what I was going to ask in terms of availability, difficulty of access, the barriers that are there and how much difference it makes to you. So, perhaps I could just ask one question, really, which is: do you think that unpaid carers should have a right to respite and breaks? And, if so, what would that right look like? What would it consist of, do you think? What should the entitlement be?

Who would like to kick us off? Chris, yes.

Respite can be so many different things if people were to think outside of the box. I certainly couldn't have left and gone away for a day or even more than a couple of hours. But, at one point, through Carers Trust, I was given a gym membership—this was before COVID. And I was able to take an hour and a half to go and have an hour's swimming—it took me 15 minutes to get there, 15 minutes to get back. And for that one hour of just swimming up and down, I was able to just not think. And that was the most—. After each of those sessions, I was much calmer, less stressed. And sadly, COVID came in the way and that all stopped. But, for me, that was a perfect respite. I didn't have to leave home for long and I could actually get some benefit out of it. But I couldn't have done any of the other things that are more traditional respite.

Lovely. Any—?

Yes, I agree with you. I think respite is just several hours just not to think, not to be in our bubble or house, and just to be ourselves and to rest—just that.

Sue.

For me, I'm looking for more, I'm afraid. I need a break, a complete break. I've had two one-week sessions this year, one in the hospice, and I've never had such a good discussion with a nurse and a doctor as in the hospice. And I could relax completely. I could do things maybe around the house—you know, just doing that—or I could go out for a walk without having to organise and arrange and make sure that this was in place and that was in place. So, that was hugely important to me.

The second week, I paid for. I found a week, eventually, in a local dementia centre, but I will never forget—. That was relaxing too, because they were professional, and I felt they would look after him okay. But I will never forget the day I picked him up. I paid the bill, and I got a phone call saying, 'He's got this funded nursing care, but you don't get it—it goes to the care home.' The dog that we'd had for 16 years collapsed and I went up to the vet. I couldn't get my husband out of the car because his knees had gone—I think he'd been wheeled around for a week instead of being helped to walk down the corridor. And it was an appalling day. And all of a sudden, that week of relaxation had just gone in a flash, you know? So, what I would be looking for is a right to x number of weeks to be spent during the year, however people wanted to spend that time.

But, having said that, for me, the week away is crucial. I want a week every—I don't know—two or three months, to recharge. But it's just not out there; it's not available through the local authority and it's not available in the private sector, either. I can't book ahead. My friend who lives not far away used to be able to do that, but it's just not available now.

Lovely, thank you. Does anybody else want to pick up on this point?

I think we offer lots of different activities and we're constantly asking people. We have Amser funding, so that's always great that we can offer things. But when people can't leave their homes, there should be sitting services. People shouldn't have to pay themselves; it should be part and parcel of that care package. Not everybody has that money, and even if they do have a bit of money they can't. Somebody paid recently, one of the carers paid, something like £5,000 for somebody to go in and live for two weeks.

Lovely. Thank you very much. I've got one very final question before we bring our evidence session to a close. We've got three minutes left. Is there any key message that you'd like us to take away that we put in this report, something that could really resonate, that will go to Government, that you think could make such a huge difference? Just a very short key message that you think we need to be putting in our report that goes forward.

We need to be recognised. We need to be recognised as carers. We're saving the Government millions. We don't get anything. I can't get any carers allowance, I'm over 65—you know, the time of your life when you need more money.

Chris.

I'll go back to my 'willing and able'. We need to find out. We are covered by the 2014 Act, and we have to be willing and able, and if something happens to change that, who do you go to? I would really like that spelled out for me.

Okay, thank you. Anne.

Well, for me, it's always that, without love, we are nothing. And I think before thinking about the money it's about community, it's about sharing, and I think, without the charity, things—. It's very important that still exists and still goes on, and perhaps more for them to be able to help us, because they are our carers.

Lovely. 

Can I just say one more thing? 

Yes. 

My mother—. My mother died last Saturday, on the eve of her one hundredth and second birthday. It's been my privilege to care for her. But I wish other people—. I wish there'd been more actual care for her. That's it.

Thank you. Thank you very much. Sue.

I would just reiterate the saying I put in my evidence, an English saying, 'fine words butter no parsnips'. It's great that we're recognised in carers assessments, it would be lovely to have a right to respite, but if there's nothing underlying it, it's a waste of time and energy.

Thank you. Kay, do you want to add anything finally?

I just think we need—. We're holding, as organisations, hundreds and hundreds of people now who are becoming very unwell themselves and have to fight for ongoing funding. There should just be that ongoing funding and always developing what the carers need and what services. There shouldn't be—. People use the word, now, 'fight', they use the word 'beg'. It never used to be like that, and I've been working with carers for many, many years. It shouldn't be like that. 

Thank you very much, and can I just say, I'm sure on behalf of the whole committee, thank you very much for sharing your stories with us and your experiences? It's been a very, very powerful evidence session, and we're very, very grateful for your coming today and sharing that with us. So, diolch yn fawr iawn. Thank you very much.

Just to let you know some procedural matters, we will send you a transcript of everything that's been said, just for you to check for accuracy and to make sure you're happy with everything. But as I said, thank you very, very much for coming today. You will be a key part of our inquiry, going forward. As I said, your evidence has touched all of us, so thank you very much. I hope you have a very pleasant rest of your day. Thank you.

Okay, we are going to take a short break now, so I propose that we go to private session. Thank you.

Welcome back to our evidence session today. We move on to our second panel of the day. Welcome, everybody, and thank you for coming to our evidence session. If you'd like to introduce yourselves, that would be lovely. We've checked the translation, so that shouldn't be a problem. So, if you introduce yourselves in the room, that would be fantastic. I'll start with Hazel, please.

Hi, my name is Hazel. I care for my—. I've got three special needs children, so I'm a parent-carer. I've got two autistic sons and a hearing-impaired daughter. I also have an autistic husband, who has been excluded from employment for more than two decades.

Lovely. Thank you. Kalpana.

Hi, I'm Kalpana Natarajan. I'm an unpaid carer. I've been an unpaid carer for almost all my life, and I also help a lot in the black, Asian, minority ethnic community.

Thank you very much. Bobbi-Jo.

Hi, good morning. My name is Bobbi-Jo Haarhoff. I've been an unpaid carer for my daughter, much like—sorry, I didn't get the first speaker's name—for 21 years, and I've recently become a special guardian to my nephew.

Lovely. Runa.

[Inaudible.] Sorry.

You're back with us, yes.

I thought I'd unmuted—apologies.

That's okay.

My name is Runa. I work at the carers centre. I'm the Amser co-ordinator, which is funded by Carers Trust. I'm also an unpaid carer for my mum and I used to be one for my father. So, I've got experiences from both sides, so in a working capacity, as well as a personal one. I also work with Jusna as well.

Lovely, diolch. And finally, Jusna.

Hi, my name is Jusna. I'm also an unpaid carer, and I also work with Swansea Carers Centre. I'm a BAME co-ordinator, and BAME is the black, Asian, ethnic minority community. So, we provide service awareness of everything that's available for the BAME community in Swansea.

Lovely, great. We'll go into our questioning now. It's very informal, so don't feel, in the setting we're in—. We'll just have a bit of a chat and go through our questions. If you want to speak online, if you raise your hand, I'll see you on the screen here and I'll bring you in. But we'll start in the room, so I'll ask a question and just go around everybody. I just wondered if you could explain your caring role, what you do at home, who you're caring for—I know that some of you have highlighted that already—and how many hours a week you're caring and what that involves back home. So, if I start with Hazel, that would be lovely. Thank you.

I think the nature of the caring role—. I don't know about other people, but for me it's 24/7, it's as long as I'm at home, and even if I'm not at home, my phone has to be constantly not on mute, just in case school might call and just in case of anything. So, I have no choice, I have to work, even though I'm an unpaid carer, because otherwise there's nobody else in the house that would work. And as an immigrant in this country, even though I have been here for more than 20 years and all my children are British born, for some reason, we still have no recourse to public funds. So, that means that we have to work and then we are not assessed—there are a lot of things that we could have been assessed for, but it's not accessible. So, I think that my own well-being or my own anything is always, always the last to be considered, or is not even considered.

Kalpana.

I had to take care of my late partner in his palliative care and I did not get any help, and only because he wanted to pass away in the house. And since we did not take the hospital bed, we were not given any help, and every step was a challenge. When I was bed bound, I didn't get any help.

I've always been in the community here, and there are people in my community who, though they have been here for decades, they can't speak English. They have done business, with good book balance and everything, but they don't speak English, and then they are carers. They don't know that they are carers and they don't know anything. And even I live and learn every day; I have not been told so many things. When I helped them with the assessment—I am from the Vale of Glamorgan—and they said, 'There is no assessment as such for us.' For me, also, they said the same thing. It's a real challenge where any kind of care is concerned. But since we don't talk about it, I think people are not aware. I don't know the reason. I only feel that if you could mix the east and west, do you know, the spirituality of the east and the materialism of the west—if we could just mix that and then help us, it would go a long way. But I think that's not there, so we are still struggling.

Okay. Thank you. Bobbi-Jo. 

I care for my daughter, as I said earlier on, who was born as a singleton in a triplet pregnancy. Basically, that means she had twin brothers who were from one egg, and she was in a sack on her own, and they all came together. They were born very, very early, 12 weeks early, coming up to twenty-three years ago. So, she was diagnosed with cerebral palsy at about 11 months. We were told that she would never walk, so I basically cared for her. She did start walking around two and a half to three. She was very, very ill, actually. They both were. So, my son needed some care as well. Gosh. I still care for her. She's at uni. She's very, very bright. The kinds of things that I do are advocacy. She has therapies that are outside the educational or the academic sphere, which means that I have to organise those things. I receive e-mails for her. I broker her therapies, depending on what they are. I'm on call any day of the week, any time of the day. Yes, I travel to uni to see her regularly. Although she's very capable, she lives in a supportive environment, but it's not a supported living arrangement. So, mum still has to go and make her bed and help her with her clothes, washing et cetera. So, yes, that's me.

Thank you. Runa. 

Hello. My caring role isn't as complex as the others here. It's basically to take my mum to the doctors, be an interpreter for her. Recently, last week, I had to take her for her flu injection and things like that, basically, shopping and whatnot. But working at the carers centre—I don't know about other organisations in Wales—in Swansea, we do offer a lot of support for people from the global majority groups. I think we're able to give the hardship plans, the short breaks and the hotel breaks, and things like that. And I think, if I wasn't a carer, I wouldn't have known about this organisation and eventually work there. Like I said, my caring role isn't as complex as everybody else's, but it is still demanding when you have small children and you have a job and your own family to deal with as well.

Lovely. Thank you. And Jusna. 

Hi. With my caring role, my son suffers from Crohn's disease, and so from the age of 10 onwards, he's been—. Well, he was critical then, but now he's stable. Like other people, I manage all his medical care, and he needs injections, so all that. And also for my mother as well, the same. Like Runa, I'm taking her to appointments. All her medical care, basically, I look after. It is hard balancing both a caring role and your job. When I spoke to Runa, that was the first time I knew I was a carer. In the carers centre that's how I've been introduced. We do a lot of work in the carers centre now, and my job is to promote it to the community as well.

Lovely. Thank you. What would you say are the biggest challenges you face as unpaid carers in your day-to-day life, in accessing services and the rest of it? I'll start with Bobbi-Jo. I'll start online this time. What are the big challenges you're facing at the minute?

Thanks for that. I thought that there was an order. 

I've never followed the rules. 

That's cool. I'm down with that. I think for me some of the challenges that I've found are—. Okay, I'll reel back. As a parent, I didn't think it was anybody else's role to look after my disabled child, so I kind of got on with things. I didn't really realise until my daughter was 18 that actually there was this title that I could wear called ‘the unpaid carer’, and that that came with rights that are enshrined in Welsh law.

That comes with its own challenges, because you feel very isolated, you feel like you've got a little bit more to deal with. You've got one child that has high needs. Sorry—one of my children didn't make it, by the way, one of the triplets. So I was left with my son and my daughter. My son didn't have any presenting needs at that time, so it's balancing that. And then as my son grew older he was kind of stepping into a young carer role, which I'm only just realising now.

Those are the sorts of behind-the-scenes challenges, including not being able to get a job in the past that would have allowed me time off, because both my children were very, very unwell, my daughter in particular. The common cold would knock her out for six to eight weeks at a time, bearing in mind she didn't walk till she was a little bit older. Those are some of the behind-the-scenes things.

In terms of accessing support, I find that it's very difficult to interface with some of the statutory provision that is out there, because before you've even asked for help, assumptions are made about who you are. You're treated in a way that, from what I understand of the rights of all people, sort of skews some of those rights, whether that's being denied access, being spoken down to, having your words not written down as you say them, and then when you try to do something about those things in a very open and transparent way, there is no course for redress. Being branded as aggressive or unwilling to work with professionals, when actually it's the other way around.

Those are some of—. Okay, I've got into quite meaty stuff there, but that's my experience, really, unfortunately. And it's not across the board. I will say that there are opportunities that I've come across that have been very fruitful, and people have recognised my enthusiasm and commitment as just that, rather than becoming defensive about my ability and my desire to engage.

Thank you. Do other people feel the same or have anything to add? Hazel.

I'll echo most of what Bobbi has said. But I'm also mindful of the fact that I can be here, I'm willing to be here, because I can speak English. I founded a Chinese autism support group many years ago, and I have a group of carers who have got a language barrier, who have got a lot of other barriers. The fact is that, in our culture, autism is seen as a very negative thing, an affliction, and they still think it is contagious. So, we carry a lot of burden and stigma and isolation. And due to the fact that we are immigrants, we don't have any extended family living with us. So, we can't have anyone to take our children for two hours to the park at the weekend, that kind of thing. So, everything is on us.

We are almost like double-marginalised as well, because, within our community, people don't accept us because they think our children are contagious; they don't want their children to play with us. The carers feel extremely isolated, and we are not able to tell our worries. Maybe our families back home don't understand, and they will just deny it, deny everything, basically. And within the Welsh community, as much as they were hoping to get help, they have got this language barrier, and they are having this complex system to access, so they do not know where to go.

And the trust. Many of them, maybe they try, they want to get some help, because they're desperate, they're really limited, but I think a lot of them have been let down. The challenge is being all by ourselves, isolation, and we have this cultural stigma, and also not having that trust for whatever is available to them. Because a lot of experiences they will have leave them with a lack of trust. I think the challenge is we are too afraid of being harmed again, so we try not to get any support. So, we just bear this in our own place and just try as much as we can within our ability.

I know, for example, Swansea Carers Centre wanted to reach out to communities, but the fact is, the global majority—. We have a few of us here today, but it's not all the different ethnic minorities. We are not a group of people; we are all different. We share all different kinds of challenges because we are different cultures, we are in a different kind of environment. So, this shouldn't be in a group like we are all the same. It's not. It's definitely not. So, that's why I'm very conscious that I can only speak for the Chinese carer experiences, not for the others. Although we share some similarity—we have carers that don't speak the language, we know what kind of barriers there could be—I think it's important to recognise that we are not one group of people.

Thank you. Do you have anything, Kalpana?

Sorry, can you just repeat the question?

It's the challenges you face on a day-to-day basis, really, as an unpaid carer.

Okay. I've written it in point form, so let me see if that will help.

Yes, that's fine.

The biggest challenge for me always is the financial strain. When you're not well, you cannot eat certain types of food. For example, if they tell you not to have sodium, most of the food that you get in the supermarkets, sodium has to be there if you want quick food. Otherwise, you have to go through the big rigmarole of chopping the vegetables, and if you have carpal tunnel or arthritis, it becomes another thing. That's financial and health-wise.

And then, we don't understand the stress and the exhaustion and the burnout when you're looking after somebody. I can give you the example of when I was delivering my baby. At that time, I just wanted to finish. The pain was that much, you know? But it's only afterwards that you realise what's happening to your body. We're told when you're making a baby that the whole body, from top down, is involved, and that's what happens when you're caring.

My partner was a veteran, he did DIY and could do everything, and when he was bedbound, it was totally different. But I always had a smile, because that's what he wanted. And I'm like that, 'We can do it'. But there is a burnout, and that's how it manifests in your life. You're taking care, taking care, and the body is quirkish. Our body is quirkish, and then sometimes you don't know what's happening to you and it manifests.

It's not that we want respite when we are taking care of somebody who is bedbound, who's not well, who has to go to the doctors. No. But at least—. I don't drive. At least if I had help to take me to the supermarket at least once in two weeks to see what I need. I cannot just do it on the phone. I have to read the ingredients, and as it is, the font is so small. So, that's a big, big challenge.

The isolation is to such an extent that people will say, 'I'm here for you'. Cosmetically, everybody's so nice. 'I'm here for you'. But when you actually need something, I have experienced something different. The people in the community have been different, because they come from the same background and they have almost had similar experiences and all those things. I come from Mumbai. Even in Mumbai, it's difficult; over here, it's difficult, because we have our set patterns. So, I don't blame anybody for that. It's not a moan, it's not a complaint, it's not even a concern—I'm just saying what actually happens, you know?

I'm sorry to say this: it's nobody's fault—nobody—but there is a gap in health and social care. There are so many inconsistent services. I went for manual handling, and the things I saw in the room, I said, 'My gosh, why didn't Raymond get it? Why is this lady I look after, who I talk to, not getting this?', 'Why are we not informed about it?' I know that for people like us, you have to tell us more than once, and maybe in slightly higher decibels, because culturally our languages are like that. If you speak in a lower decibel and with an accent, it just goes over.

And then, for a lady, I spent three, four days at different times doing the assessment. Then, when I called up again, I was told, 'No, that lady has left, and she has not left any notes.' Oh my goodness, how can you do that in this day and age? This is a council person talking to me. There are so many things that we are not told about just because we are unpaid carers. That word itself puts many of us off: 'un' and 'paid'. I don't know why, but maybe—. I personally don't mind, but there's nothing to do with money; it's as though people just don't want to know about it. That's a very big challenge.

There are young carers. I know one family, they've got a boy. She said, 'God has given me this boy because God knew that I will be the best person to look after him, otherwise I would not have had this child.' If that is the perception, can you imagine being called a carer or an unpaid carer? It's not. But still, you need what is there. You have to go for it, you know? And the whole family is involved in it. So, sometimes, we are overlooked. We are, really. I'm sorry.

As much as we want to be in this adopted country like a spoonful of sugar in a bowl of milk, we are always moved: 'You're very abrupt' or, 'You want to ask many questions'. But then, when you meet a stranger, what do you start with? 'Do you have children?', 'Do you work?' What else? How many times can you discuss the weather? I know discussing the weather is fine for lifts, but not everywhere, not at all times. Those are my challenges. Thank you.

Thank you very much. We go back online now. Jusna, have you got anything that you'd like to add?

Well, some of the things that Hazel said, that everyone is different—obviously, all different communities have different cultural beliefs and upbringings as well. So, for me, yes, it is true, but that doesn't mean we can't collaborate and work together, or can't understand each other's pain. Because, as carers, obviously everyone is going through similar things, if not—. Some people go through more, some people less.

But, yes, in the carers centre, my aim, since I've come in, is to promote and see what services—. Like the way I didn't know about any services that were available, so my job was to promote services to all the unpaid carers or carers who were going through tough times. So, yes, I feel that the challenges were mostly not knowing the service that's available within the community. And, obviously, the council and different people do different things as well. So, just to understand what's going on, so that you are doing something different from the rest of the other organisations within the community, so that you can give that something extra to your carers.

So, yes, my main thing was to promote through that way. So, we've got activities, we've got trips and things like that, so that our carers, in general, all carers, get similar opportunities to have respite and things like that as well.

Great. Thank you very much. 

Can I just make one point?

Yes, that's fine. 

I was thinking of all these Chinese carers that I know. I think one big challenge is the language barrier. So, assessing interpreter services, because it's not mandatory—. The service provider, they are not asked to—. It's recommended, but it's not mandatory. So, it's inconsistent. Like what Kalpana was saying, if you are in luck, you bump into someone who really understands, then you get an interpreter. If not, they will ask you to get your family members, which is very wrong. Or a lot of people are too afraid to ask for an interpreter, because they would think that that would jeopardise their opportunities—they are carrying a lot of fear. So, especially with statutory services—social services—I know that, for many families that I care for—. Firstly, it's already complex enough to approach for some help. When they do, because of the language, then they straight away say, 'There's no interpreter' and they will be put off forever, and not want to access that service anymore again.

I'll bring Mabon in quickly; I think he's got a question he'd like to add on this. 

If you can use the headsets. Sorry, Mabon.

Who wants to pick that one up?

Do you want to say something?

You go. 

Do I need these?

No, it's fine. 

I have been an interpreter for many years. I know six Indian languages, but, sorry, Welsh is so difficult; I hardly know any, just a few words, I'm sorry. I'm still trying to learn.

What happens with domestic abuse is—. What do I say? Whether you like it or not, they will be there—whether or not you like it. So, the doctor, the patient, everybody has NVCs, non-verbal communication. That has to be picked up—that has to be picked up when the patient is there, for even a second sometimes. And you have to work around that. I feel that comes with lived experience. You can't do anything with them, unless you bring authority, and, even then, there are people who will look after them. So, you have to work around that. And in that position, it's only if you know and you ask that they give it to you, and there are some people who want to be there, some people who don't want to be there. So, what do we do? You have to work with the system. You have to understand that, and you have to—. If you know the language—. If you have to interpret and you know the language, with examples it becomes easy for them to understand, like, 'Okay, do you remember that, do you remember?'—just to put all the dots together. I find that is much easier. I'm quite senior in my group. I have a group, and they think because I'm senior that they should ask me about this and that, but I'm okay with that. I'm really okay with that. I feel it's a blessing, my karma, and it'll help my grandchildren.

Exactly. I'll bring people in online now. I know you wanted to come in, Hazel—I'll come to you afterwards. Jusna.

Hi. What he said—. Sorry, I forgot the name. Basically, what has happened is that I think the NHS is good now. I've taken my mum last year, and I can translate for her, but they also organised someone interpreting for her as well. So, I'm not saying every single sector will have it, but some people do, and I know—. For basic appointments, when it comes to surgeries and stuff, I take her and we don't need interpretation. But, in terms of hospitals, they're quite good now. You can ask for interpreters, or, even if you don't ask, they'll organise someone for you if they know that you need language support. So, yes, that's all I wanted to add.

That's good. Bobbi-Jo, you had your hand up. I can see your hand has gone down.

Yes, I put it down just because somebody else was speaking. But, yes, thank you for coming back to me. Mabon, you put forward something that's exploded my brain really, and yourself, Hazel—in fact, everybody that's spoken. I think there are a couple of things that are coming up for me here, which is that there should be some kind of support mechanism available in order to facilitate a person's ability to communicate to the best of their ability. Now, it's going to be hard to find people to translate dialects, and so on and so forth. My mother speaks Luganda. She speaks Swahili. For her to have a full and rich communication—. She speaks English very well, but, for her to have that depth and profundity, it would be wonderful for her to have somebody that she could speak Luganda with, who is interpreting on the basis of—and this is the other thing for me—the language of the sector. I think that's what is complicated. You know, you've got this—. Hazel, you were saying 'double whammy'; I think it's a triple or maybe even a quadruple whammy, where you have, first, the language barriers, but then you've also got the language of the sector that you're working with, the jargon, whether it's a department in social services, or around very technical language in health, or in a school setting that has, again, its own sort of nuanced language. So, I don't know, I'm thinking out loud, but I think it's something that requires a lot more thought, because what we're talking about is enabling people to communicate and to have that voice and control, to have that ability to play that meaningful part in decision making that affects them.

Runa, you had your hand up.

Yes, I did. With the interpretation, I find that people use their children—sometimes, it could be a five-year-old, a six-year-old or a seven-year-old—because of the language barrier, and they don't know—. Sorry, my next-door neighbour is having work done.

We can't hear it. It's okay.

Okay. Yes, so it tends to be an issue where they then use their child and say, 'Oh, can you interpret this for mam or dad?' or whatever. If that child is so young themselves, and they're barely learning their language, how are they going to interpret for their parent? And sometimes you see people—. I can speak from my experiences when I was younger. My dad was always busy working. When he was home, obviously, he'd take my mum around, but sometimes we'd have to take my mum to the bank, and you'd be like, 'Oh, my mum wants this and that.' I was older—obviously, I wasn't five or six—in my teens, but you would get this look, 'Oh, why is your daughter interpreting?' And it used to make me feel really uncomfortable, and then it was, 'Well, why are you doing that?' 'My mum obviously needs the help and that's why I'm here. Instead of helping me, why are you judging?'

And I think that when Mabon said about that people could be taken advantage of if there was domestic abuse or whatnot, what do we do in situations like that? Do we use LanguageLine, and then that person goes home and then there's a difficult situation in the house? Or the parent doesn't want to use LanguageLine because they don't feel comfortable, they feel embarrassed and they want their child to be their support system, but then, in turn, you're putting everything on that child when that child should be out playing and making friends and doing their homework and whatnot. It's a really difficult situation, but the stigma around me being an Asian person is, 'Oh, that's my mum. I have to do it for my mum.' If I don't do it for my mum, there'll be this judgment, 'Oh my gosh, she hasn't done it for her mum and she's depending on so and so, on this service and that service.' And it's not intentional, it's just the way we've been brought up sometimes. And I think that, even to this day, even though I know that I'm an unpaid carer and I tell everybody who fits into those criteria that they are unpaid carers, I still find it hard to sometimes accept that I am one, and I'll claim that others are, but I won't accept it for myself. And I think that it's that stigma that, 'Oh, it's my mum, it's my dad, it's my brother, it's my sister—we have to.'

And I even find that with Amser. We do a sitting service as well as the breaks, and it's very, very difficult for me to attract people from minority groups, because they think, 'Well, no, why would I want a stranger in my house? Why would I want so and so? My daughter's available, my son is available.' And in their head they don't think that their son or their daughter, their daughter-in-law, their husband or whoever is busy, because they've been culturally brought up to think and to accept that this is what they're meant to do. They don't know any different. And I don't know how—. I think that, by understanding that there is this stigma, that's the only way that we can move forward and try to implement things to support people from minority groups. But I think that everybody has a role in supporting one another.

All I can think about is growing up, when you'd go to the bank and they'd look, and it wasn't a friendly look, whereas I think that people are more tolerant now and they understand now that people come from all walks of life and there are different groups, there are different cultures and not everybody can speak the language. And organisations like the centre, we do have a duty to try and create groups and services where we can help minority groups.

Lovely. Thank you. Hazel, I know you wanted to come in. Have your points been covered by others?

Just two very quickly. I'll be very precise. Young carers, so young people who act as interpreters, we are exposing these young carers, because they are also a carer when they are at home, to overburdening themselves, which has been covered a little bit. At the same time, a lot of information—. As a carer myself, living in the cultural stigma environment, I can't bring any friends, because I would be afraid that all of the information might be compromised, and then that would then be literally all of the community discriminating against my family. And also there is a lot of terminology, terminology that doesn't exist in our language, not just the jargon. That's another thing—jargon is another thing.

Okay. Lovely. I know that you want to come in, John, and I want to bring Lesley in as well. Have your points been answered, John?

They have actually, Chair. It was about the cultural differences, and the Asian community and the culture of self-help, really. So, yes, thanks, Chair.

Okay. Lovely. I'll hand over now to Lesley Griffiths. 

Thanks very much. I was just wondering if you could give some examples—I hope—of how you are supported as a carer. I'd be very interested to know: have you had a carer's needs assessment undertaken on you by social services?

So, I didn't know where to ask for it, but my friend, obviously, saw that I was really struggling. That was maybe 10 years ago now, when my children were very little and my husband was having a lot of problems. So, I rang up the social services disability team and I was told—. Because, at that time, only my son had got the diagnosis and I was still navigating the autism pathway, and we didn't know anything. So, calling social services was our last resort, but then we were told, 'Because your son is high-functioning autistic, we don't offer any support', and that's it. So, many years later on, I was working as a professional—I'm an autism specialist now—so I know that there should have been some other—. We were entitled to some support.

So, with great courage, I approached social services again. Again, I did not get any support. And I have been offered a carer assessment, I have been. And it took seven appointments, my time, attending and then coming to my house, and, at the end, we were offered caravan respite, a one-off, which is not what we wanted, but that was the only thing that could be offered to us. It's not helpful at all, and that wasted so much of my time. And we have to present—in our vulnerability—we have to talk about our life, everything, and then hope that maybe they'll understand, but caravan respite. And since then, I've never approached them and they have never come back anyway.

When the short-break scheme was introduced, I thought that, because I run a carers group, I would bring that to the carers to see if that was something they wanted, because they don't understand, they don't trust, and then they don't know the language, so they choose not to. And then one carer, she signed up, but she came back to the group to say that they offered for her to go away, but the respite that they offer to the carer is not culturally sensitive, it's not tailored, it's generic. Because we might not like a spa or a caravan, because this is not what we are taking a break from. And the carer was saying that, if they can let all the Chinese carers go somewhere where we feel mutually supported, then it is somewhere where we can get rest, but when we feed that back, they say, 'This is not what we do.' So, maybe there is provision there, maybe, but it's not there to meet people's needs; it's just there to tick a box, I feel.

You weren't asked what you would need?

Sorry?

You were not asked what you would need to help you with your carer's responsibilities or what you would prefer to have; you were just offered.

We have requested—. Yes, we were just offered—

You were just offered the caravan and nothing else.

Nothing else. And then we took it anyway, but it wasn't helpful.

Have you had a carer assessment?

I have and so have people in my community and they've been with me because of the language. But as I just said, this one lady, she spoke to us for so many weeks and then—. We don't have anything in writing that I can keep in my file. I have a habit of collecting papers—not that I'll find it every time, but I'll save it on the laptop, I'll do everything—but I have not seen it. Neither do they know. And then they were asking me, 'Why are they asking me so many questions?' So, I was very frank with them, and I said, 'See, this is our system. We are in this country. If they have to help us, they have to know everything. It's like going to a doctor or going to a lawyer.' That's the only way I could explain. Even for interpretation, one word, I could explain in two or three sentences. They ask, 'Why are you taking so long?' But sometimes people don't know and we don't get anything, you know.

So, your experience of having that assessment was spending, I think you said, three or four days with somebody who then left, and no further information was left. They didn't come back to you.

No. 

At all? Okay.

And then somebody said, 'We don't have that system in this.' I don't know whether—. I'm sorry, I'm sorry; I don't mean to be personal. I've got nothing against anybody. I don't know if they're trained to say that, or if it is spontaneous or what it is, I don't know. But as it is, we don't get through on the phone, so we have to patiently have 40 minutes, one hour, and then you talk to somebody and then you go there, and then it's just that you are going round and round, round and round, and sometimes you cry, sometimes, 'What to do?' That's the only thing we can do. It's free, you know; crying is free so far. And people in my community, I don't know. I mean, at least when you have a family, if they don't give you, they'll give you some words, and then it's a solace, you know; somebody's talking to me. So, here, we get scared to talk also. We don't know how we'll be quoted, what we were saying, you know.

It goes back to what Bobbi-Jo was saying about people interpreting what you're saying in a different way. Okay, thank you. Shall we go online? 

Yes, online, Lesley, yes.

Has anybody got their hand up? 

Does anyone want to put their hand up and contribute to this question of Lesley's?

About carers assessments and your experience of having one. I think it's Runa. Oh, no, Bobbi-Jo as well. Runa. 

I didn't put my hand up, but I can say a few things. I haven't needed a carer assessment because obviously my needs aren't as complex as everybody else's. But from the centre, we do offer an initial assessment where people can come in and we spend about an hour or so with them, discussing what they need, what they want from us, where we can signpost them, give them the information that they need. So, if they need to be seen by a social worker and have that social work assessment, we will signpost them, give them all the relevant numbers that they need and so on. And I think Jusna's working very closely with the minority groups where they didn't know what an assessment was, they didn't know how to get one, and she is able to go with them, and if they need her to go with them to attend appointments, that's what she's doing.

Thank you. Shall I bring Jusna in, then? Are you okay, Jusna?

Yes. Can you hear me? 

Yes, we can hear you. Yes, thank you. 

Yes, I was going to say, from a personal perspective, when my son was having his medical treatment, he was at the age of 10 when they officially diagnosed his condition, that he had Crohn's disease. So, I had no assessment, nothing done. To be honest, no support was given. The only thing we were given was a support pack, to join the Crohn's Disease Society, and things like that. But there wasn't any social worker or anyone coming to us saying that, 'Oh, you can have a carer assessment, basically.' Nothing. We didn't even know what existed. So, yes, I think that lacks. And when you are going through—. Because I was in and out of hospital with my son at that time; he's stable now, he's 19, but like I said, he started from primary school and didn't get diagnosed till he was 14, 15. So, all these times, we weren't given any support, anything.

So, that's why when I work, I work passionately, because I want to promote. I know we can't help everyone, but I'd love to promote and see anyone within the community who's going through similar things getting the appropriate services that they need. And so, yes, that's what I was going to add. 

Thank you. Just before I go to Bobbi-Jo, Jusna, you said earlier that you only identified yourself as a carer after speaking to Runa. 

Yes, that's when I came to the carers centre. That was only when he was about 17 or 18, which is three years ago. And so we spoke about his condition and anything else that they could offer. And so I explained to her and she said, 'Yes, you would be an unpaid carer'—sorry, the sun is in my eyes—'you would be an unpaid carer, so you'd qualify as one.' So, I had the, I think, short break or something. So, that's how she assessed. She did the mini assessment and then we went further on. To be honest, that's how I knew about the carers centre.

But up until that point, no other service—. Your doctor, nobody, a hospital, school didn't—

The hospital consultant, like I said, they gave me a pack saying that this was the service, you might be able to reach them, the Crohn's society, and that was it. Nothing else was given to my son or me. So, the school supported him, in terms of that they've given him a discreet card so that if he needs the toilet in an emergency he can go. Meanwhile, he was in and out of hospital all the time until I think it was GCSE time—he missed 60 per cent of his GCSE because of his condition. It was that bad, and so, the school was okay with it, but, like I said, from any other outside organisation, within the NHS, even, I haven't had any support. 

Okay, thank you. 

So, I can understand why people are frustrated, and when you are at your most vulnerable, you need people. I have a massive family, and we grew up here, so I have support, but that doesn't mean the NHS couldn't have done anything else extra. There are so many—. Financially, you are struggling because, obviously, you're not working if you're in and out of hospital, so things like that. So, I feel like a lot of things I didn't know, I know now. Like Hazel said, I could have accessed that then, that would have been helpful to me, but, obviously—. He's better now, thankfully, much better. I'm not saying it's gone, the condition is there. He's taking an injection, that's managing it, but, again, you're in and out of hospital all the time with him.

Okay, thank you, Jusna. I'll just go to Bobbi-Jo on the carer's needs assessment, please. 

I'll just confirm that I've never been for a carer's needs assessment, and I would be loath to even consider going for one, simply because I think I said to you that I discovered that I was an unpaid carer when my daughter was 18-ish, and I discovered that I was an unpaid carer when I was going through a kinship fostering assessment. That assessment process has left me scooped out, very despondent and without faith in the particular local authority that did that assessment because they, basically, identified that I was an unpaid carer, suggested that they wanted to find out more about what I did in terms of caring for my daughter in order to assess whether I could care for my nephew, but didn't actually take that any further. Bearing in mind that I hadn't identified at that point, but they had identified, the local authority had a statutory duty, if I understand, to set something in motion, whether that was to speak to me—. As Runa said, she informs people, gives them information. There was no information made available, and what I felt was happening was that my caring duties for my daughter were being used as a negative leverage against my desire to care for a child and keep that child in his family.

Thank you—

I will say that—. Sorry. 

It's okay. 

Did you want to—? 

No, you carry on, Bobbi-Jo. 

I was just going to add that I know that it sounds negative, but I have to be honest with this inquiry, because the reality out there is that people are finding that their information does not belong to them. The process is such that you have an assessment. That assessment doesn't come back to you as a draft. It goes to somebody's manager, and by the time it does come back to you, if it comes back to you, it doesn't look like anything that you've discussed, or you have to ask for it via a subject access request. That doesn't feel like early intervention and prevention. That doesn't feel like partnership. My best support in terms of moving the situation forward for myself has been to put myself in situations like this, where I speak about my experiences and where I sit on strategic bodies in order to kind of effect policy change, not just for me, but for those who are coming after me, really. So, that has been somewhat of a remedy. But at this point, I can honestly say I'm not sure that I could recommend anybody—.

Going back to what you said earlier, would you say that that is bias against you or discrimination against you? You said earlier that people form a view of you, which could be skewed.

I'd say in my particular situation, in that specific process, there was a systemic and sustained approach that moved from worker to worker. Workers who had never met me had decided that, because I am articulate and I do ask questions, and I do question if you're going to say that I've said something that I haven't, that it was best to perhaps punish me or put me in my place. I don't know if that was specifically because of the colour of my skin, or if it was a combination of the colour of my skin and my ability to work openly, honestly and transparently with people who couldn't.

Thank you.

Thank you very much for that. I'll move on to Mabon ap Gwynfor. He'll be using Welsh, so it's on the headsets. Thank you.

Who wants to kick off on that? Shall we start online? Who would like to go first? I'll have to pick somebody otherwise. Jusana—I can see her hand is up. You're unmuted, Jusana. 

It's Jusna. I thought you were talking to someone else.

Sorry, Jusna. That's my fault. Apologies.

That's fine. Basically, as a carer for my son, and my mum, I feel—. Like I said, no support was given at that time, and my needs were at a peak at that time. You feel confused, frustrated, and all these other emotions that you go through as well, because you can't help your child. And plus, there was nothing for you, whatsoever, available. So, as a parent, I feel I was left helpless, to be honest. I feel emotional and frustrated that I wasn't able to do anything or that nothing was given to me, and so that's my main impact that left—. Well, it still is with me. I feel like there should be more in terms of services for people coming together, saying the things that would have helped me at that time about his condition. Maybe a support group that was offered at that time and was close to my home would have benefited me. But even now you worry, because it's not gone and it's a lifelong condition for him. As a parent, I'm constantly hoping that his condition maintains, so I'm stressed all the time. You are feeling helpless, really. That's what I was going to add. But there aren't any other services that I can see that would help me. As I said, language is important. For someone who doesn't speak fluent English, it will be even harder for them to get services according to their needs.

Thank you very much. Runa. 

I think you go through a wide range of emotions. I've got a number of siblings, but because I'm the one in Swansea I think the majority of the care falls on me. As much as you love your parent and your siblings and whatnot, you can't help that emotion sometimes when you feel resentful, you feel sad, you feel overwhelmed, you feel like you're not giving enough of your time to your own family. But then, if you don't support your loved one, who do they get that support from? I think it's a wide range of emotions.

I don't know about other places, but in Swansea, especially with the carers centre—I might sound biased—from when I've started, I think there has been a difference, where directors and senior management understand our point of view and are trying to implement services and groups for these carers. It will take time, but I think the more education we have around this, the more we can do for people and support them.

But these emotions, everybody will have them, no matter how strong you are, how resilient you are. You will have them, because you feel overwhelmed with that situation and then you feel guilt then: 'Oh, why did I feel like that? Why did I do that? I should have done that'. And then you spend the whole day really upset and apologising. What I say to carers now is if you don't look after yourself, nobody else will. And it's really hard to do it for yourself, when you're encouraging others. I think there's a lot of learning required in organisations, statutory services and whatnot, but I think it is getting better than what it was, and I think we should be happy about that.

Thank you. Bobbi-Jo, do you have anything you'd like to add? 

Yes. There's definitely a deficit in health, from my point of view. I feel like the example that I've given you is it continues to take—. I think, as an unpaid carer stepping up to look after a child that would otherwise have been displaced from his family, as so many children find themselves, the key thing here is that I was already an unpaid carer and should really have been supported by my local authority, but instead of being supported, the opposite took place. I'm now trying to catch up on myself whilst maintaining my caring duty towards my daughter, and also having this wonderful young person who's managed to stay in his family. I think it's a shame that there isn't the attitude that we are one big family and that we are diverse, we have our differences, we need different types of support, and that that isn't met in a genuine way on top of the statutory duty, and that willingness to work with people. I don't know if that make sense. I'm saying that the law is the law, and I think that some of that is not actually happening, but in professions that profess to work with people, the most basic and fundamental empathy, compassion and a duty to care isn't taking place, either.

Thank you. Does anybody in the room want to add to this?

On the impact of caring? 

On the impact of caring, yes, the impact of caring on you. 

Do I still need these?

No, not for this part.

I've got some points. I was hospitalised in January. So just as a preamble I'll tell you the impact of caring over the years, what has happened to me, which I didn't know, and which happens to everybody, and most of them in my community, my family, they hardly know that. ‘Oh, is that the reason? Is that it?’ We don't know.

The first is the physical strain. Supposing you have your mother, who's on dialysis, and you have to pay for it. Each dialysis could cost quite a lot if you're not in this country. And if you're in this country, you have to pay your taxes and then there are so many things to it. So, that's one thing: tiredness, injuries, poor sleep. You don't even know what's happening to you at that time.

Then what about the mental health, the stress, the anxiety, whether I'm giving medication properly? For example, Raymond was in palliative care and he was bleeding. The doctor came after midnight, around 2 o'clock, and he said, ‘You'll have to give him this injection around 05:00'. I said, ‘Doctor, I'm a mother of a doctor. I'm not a doctor’, so he said, ‘It's very easy. You just take this and give it.’ I don't know how I did it. I really prayed. I don't know what I did, but I had to do it. We are in that state now.

So you can imagine what's going on. My daughter is a doctor and she's not in this country, and my sister is in another country and they're telling me, ‘No, we are here, we are praying’, everything. You can imagine the stress and the things that go on at that minute, and Raymond is telling me, ‘Go on, go on. I'm here. Nothing will happen to me.’ So that is the maximum that can happen to a person when you are in that situation. At that time, you don't know anything.

Don't talk about the financial hardship. Every time I have to get out of the door, I'm spending at least £15 because I don't drive. Raymond was bedbound. That is my example, and that's the example of many of the people in my community. Many of us don't drive. Firstly, the father doesn't let you drive, then the husband doesn't want it, then you don't know—. So many other things.

Then there is social isolation. Because you're not well, you're in this country, many people don't want to come to your house. The doctors tell you that he's very vulnerable and all those things, and then my partner didn't want anybody to come in the house. ‘You do everything’. That was it. 'I'm not used to having people in my house'. That was one other thing.

Then there are reduced opportunities for any kind—. Even on Zoom, how do you do it? You're on Zoom and then suddenly, because he's up, he'll call you. Or you know that it is medicine time. Anything like that happens.

Then there's an emotional guilt that because we are looking after him, we are not looking after, maybe, my grandchildren. I want to talk to them, I'm not able to talk to them. Maybe I want to pray, because for us, when you know somebody is in palliative care, the journey of the soul is much more important. I'm not able to do that. And to do that, first thing I have to do is have a shower. A shower means I have to leave him alone. There are so many things going on. There's a big guilt. The positive aspect is a sense of purpose and closer family bond. All they can do is talk to you, and the family can talk to you, ‘Do this.’ That's all they can do.

When I was bedbound this January, one fine morning I couldn't get up and I didn't know why. And I said, ‘Okay, the first call is my daughter.’ She said, ‘I have some spray.’ I did this, everything. Nothing, nothing. After some time, I was just able to move a little. I think that somebody came home and she was not able to come inside, but she has my key. So my friend came home and she said, ‘Where are you?’ I said, ‘I'm in bed’, which is not like me. I'm not like that at all. And then I couldn't—then I was hospitalised.

When I came back, the carers came to ask me what kind of help I want. They said they can give me only 10 or 15 minutes, and they can only take the frozen food from the freezer, put it in the microwave and put it on a tray and give to me. That's all they can do. I said, ‘I can't eat any of those foods.’ First, I'm a vegetarian and I've got health problems. I've got carpal tunnel. They said, ‘No, we cannot do that. We cannot chop.’ I said, ‘The 10 minutes that you come, why can't you chop some vegetables for me?' Then I can cook it, even though I'm supposed to call my sister because I'm not well; I get dizziness. So, you can imagine how—. And then, after all that, she's telling me, 'You're too independent.' I said, 'Am I independent or am I self-sufficient?' Nobody in this world can be independent. No individual, no country is independent—policy, everything, you know. 'I cannot do these things, I am telling you.' But, no, I did not get any help. I did not.

Thank you very much. We're over time now. I was going to say, John, did you have anything you wanted to add very quickly? If not—.

Yes, only on respite care, really, Chair. Just to ask if there's anything further any of the witnesses wanted to say as to what respite care should look like. Should there be a right to respite care, and if so, what should that consist of? Respite care and breaks, really.

Okay. I'll do this very quickly. 

Yes, that's fine. Thank you.

I think the generic respite care, which is available at the moment, probably, if there were an option for a tailored option as well, I think that would be very good, because we would then be meeting people's needs. We want to provide meaningful support, rather than just—. Yes.

Thank you. Is that shared with everybody else, a sort of tailored respite care?

Just one more.

That's okay.

Because we are—. So, I'm speaking for Chinese carers; I keep thinking of Chinese carers now. Maybe they will be out of reach of where you can reach out to. I think it's important if you can work with existing groups, so that they know there is a trusted community, they know they can open up to tell you what they need, so that you can be providing meaningful respite.

Okay.

I could say one word if I may. 

Yes.

I feel care cannot be one size fits all. It must be flexible, personal and culturally aware. Systems should adapt to people, not the other way around, wherever you can.

Do you know—? I know Bobbi's got her hand up, but I actually think, on that, that's probably—. We're over time. It's probably the best way to finish the session on that message that you've just given us. I'm sure that's probably shared by all our other unpaid carers who are on the call. But can I just say, on behalf of the whole committee, thank you very much for your very powerful evidence of your lived experience that we're hearing today? It's been absolutely overwhelming, and thank you very much for coming along today.

A procedural matter now: you will be sent a copy of the transcript of everything that's been said in committee, just for you to check over and make sure it's all okay and you're happy with everything. But just once again, thank you very much for coming today. We're very grateful to all of you.

Another procedural matter: we will break now shortly, and we'll come back for two o'clock, is it, Sarah? One o'clock. One o'clock. So, thank you very much.

Thank you.

Thank you for having us. Thank you.

Good afternoon and welcome back to the meeting of the Health and Social Care Committee. We're now on to our third evidence session of the day, with our third panel, which is our young carers. This is the panel I was looking forward to probably the most out of all of them. It's great to see you all here. We've checked the translation. We've got all Members back and present in the room. We're expecting no fire alarms or anything today, so if it does go off, please make your way out in an amicable fashion. Lovely.

So, if we go around and just introduce yourselves. You obviously know who we are. But if you'd like to start with Albie on the end, and just introduce yourself, that would be great.

Yes, that's fine. I'm Albie Sutton. I'm 16, I'm from north Wales, and I'm a young carer. I have to care for my mum, who has got a lot of disabilities. So, I have to do housework around the house, or I'm cooking dinner every other day. Stuff like that.

Ffiôn.

Hi. I'm Ffiôn. I'm just about 18, and I'm from Wrexham.

Lovely. 

Hi, I'm Elektra. I'm 15, and I care for my brother, who's non-verbal autistic, and an epileptic sister.  

Hi there. I'm Kate. I'm director at Carers Trust Wales. 

Great. Diolch yn fawr iawn. Thank you, all, for coming today. Members have got some questions, but I'd say it's a bit more informal. Rather than rushing it, we'll try and get through everything as informally as we can, if that's all right with you.

So, I'll kick off with the first question today, then. Can you tell us as a committee a bit more about your caring role and who you care for? Can you give us a little bit of an example about that and roughly how many hours a week, as young carers, that you're actually giving to looking after the people you care for? If I start with Albie again, that would be awesome. Thank you.

Yes, that's fine. So, for my caring role, as I mentioned before, I've got to care for my mum. So, she's got stuff like avascular necrosis and she's got diabetes and asthma. So, it's a real struggle for her to move around the house or to even do stuff like getting dressed or moving to the toilet by herself. It's only in the room just across from her. So, I've got to help her do those tasks as well as taking on the tasks that she's unable to do. So, for example, housework. I'm cleaning the house every weekend, hoovering up, cleaning the kitchen, cleaning the bathroom. And then I'm also cooking dinner for my family every day. So, as soon as I've finished school, I go to the gym, and then as soon as I finish the gym, I come home and I'm cooking dinner, as well as also budgeting  for meals as well. So, I'd say that probably my caring role takes up around, I guess, 20 hours, I'd say, or 25 hours a week, if I'm putting all that together. I'd say that's probably my caring role summed up.

Thank you. Ffiôn.

I have cared for a few people over my time of being a carer. I've been a carer since I was four years old. I used to care for my mum and my sister. My sister used to be in a psychiatric ward. She was there for seven years. I care for my mum because she's diabetic, classed as disabled, has a long list of mental health issues, and she has, in the past, suffered a stroke and had cancer. I don't know how she's still standing. I always say that.

In terms of hours caring, my caring role looks quite different every day. It's never a certain routine. Nothing's certain at all. Sometimes my role is running around with medication or running around with my mum's blood sugar monitor, being like, 'Please take your blood sugar. You don't feel well. Just please take it.' Or she's on new injections right now, so helping with those, or simple tasks like going around the house. But then, unfortunately for me, my caring role is a lot more mental. So, things like leaving school early because there's nobody else to keep her safe from herself is what I will say. Because it's never consistent, I'm not sure if I could say how many hours. I'd say minimum maybe 10, and it just depends on the week. If she's having a good week, then great, and if not, then it's a lot more.

Thank you. Elektra.

As I said prior, my brother is non-verbal autistic, and my sister's also epileptic. My brother lives in the house with me. He's also got global development delay. I help him get ready for school in the morning. I help him communicate. I've always been his voice. I have been since I was about three years old. When it comes to my sister's epilepsy, she's also got two kids, so I'm either handling her having a seizure, and I run around with her medication, and run with her in the ambulance, or I'm looking after her kids. It's varied every day. If Katana hasn't had a seizure that day, that's great, but there is still the aftermath of a seizure that can take a week to get over, especially if she's been in the hospital.

My minimum, I would say, is probably about 20 hours a week, especially when it comes to having Blake being home so often. If he has had a bad day in his school unit, or if he's had an over-sensitised day, he's been overwhelmed, has had over-sensory issues, anything like that, it takes quite a while. It also takes a lot of time to de-stimulate him and then get him ready for bed. It's multiple things like that that can take a lot of time. 

Okay. So, as young carers, what are the sort of biggest challenges that you face on a day-to-day basis? So, just general things that really make your day very difficult, and that type of thing. I'll start with you, Elektra, this time and go the other way.

When it comes to my sister, Katana, I have been having school assessments at the same time as she's had a seizure. I have been in ambulances, waiting for her to get into the hospital, whilst also studying for a biology assessment. 

In prior cases with Blake, if he's had a really rough day, and if he's been overwhelmed, I can't focus on my school work. I can't focus on myself, and I don't have time for myself either. It's mainly things like looking after Blake, prioritising Blake or Katana, and especially when it comes to looking after her kids, if she's had a seizure, that will take up a lot of my time. 

My time isn't used often. I do martial arts when I'm able to, and I'll stay with my sister Katana. When life—. Katana and Blake are very different. When it's Blake, it's so structured as a child, and he needs that structure constantly, whereas Katana is very vulnerable, she can have a seizure at any second, so it's much more difficult to plan what I'm doing that week, plan if I'm free, plan if I'm going to be able to do my school work that week, or even know if I'm going to be in an assessment that day. I have gone into school prior, where I've been in an ambulance, and I've been in the hospital until three o'clock in the morning, and then gone and done a test. That's a lot of the percentage of my grades when it comes to GCSEs. 

Okay, thank you. Ffiôn. 

I think that's a really hard question, because something I say often is: by now, a lot of the things that I would say that I used to find difficult are quite normal to me. I think I agree and relate to Elektra on many levels in terms of education. But I think, for me, the main challenge right now is looking after myself, and learning that you actually have to keep yourself afloat in order to keep looking after someone else. I think, for a very long time, I ran on nothing, because of my caring role, or I didn't think about the things that I needed to do for me, like respite and things like that. And I think, now, that's becoming more of a challenge, because I am in sixth form, I'm working, and I do many other things on the side. And trying to manage those things, and kind of get the best out of them, whilst also trying to look after someone who can't do that for themselves, even though she's very stubborn, I think that, for me, is the biggest challenge. 

And also, right now, I would say, I realise a lot more that there's support lacking in the big, wide world for young carers. And when I try and do things, or I need extra support with things, and I don't receive it, I realise that a lot more now, because I feel like, even when caring when I was younger, I maybe just thought it was normal to not have things in place to help me, whereas now I realise that there are a lot of things and lot of support that we should be getting, and I should be getting, and I don't get, and I'm trying to explain to 70 different people why I haven't done this, or why I can't do that, or why I don't have the time to do another thing. But I'd say those are the biggest challenges for me right now.

Before I come to you, Albie, I'll just bring Lesley in quickly.

Just on that point, Ffiôn, you said at the beginning that you're 'just 18'. Have you seen a difference in going from 17 to 18 at all, from organisations or services?

Yes, but I feel like that's because there's a bit of a gap everywhere in terms of people thinking that young adult carers and young carers need completely different support, when that's not the case. The main example I can give is when you get to 16 and you age out of the healthcare services, it's like black and white. You go from one thing to another, and I think it's the same thing in carer organisations right now, in a lot of them. You have all these different support networks and processes and things that you do every week and people that you see, and then you go to the young adult carers' service, which should be similar, if not exactly the same, to ensure that that transition is as smooth as possible, when it's not. A lot of it's just cut off. I've had many discussions with other people, and I've watched my friends that are carers go through the exact same thing of, 'I'm at a point where I feel like, why am I not getting the same thing?' And I know this for a fact: it's not always the organisation's fault. Sometimes it's the way organisations are commissioned. Sometimes it's who has the contract for certain things. And that's fine, but I do think there is a gap that I have noticed more than anything, because I have been with the service since I was eight years old, so that's a good 10 years. So, now to have to think, 'Oh, right, I'm going to another service that does completely different things and doesn't have nearly as much support', is—. 'Noticed' isn't even a good enough word. There have been so many times—. I'm going to be so honest. I've had so many discussions where I've like been so upset or cried, because after all this time, to have such a big change, it feels futile to me. I'm like, 'Why is it like that?' But, yes, I would definitely say I've noticed a change.

Thank you.

Before I bring Albie in, I think Mabon wants to come in quickly. I think he's probably speaking yn Gymraeg, so—.

I'll speak in English. In a dream world, that would be the ideal, that you don't have to go around to 70 different people explaining yourself. The only issue with that, to be brutally honest, is that even in other situations where you do have one person, it's less about having that one person and more about having the people that that person relays all this information to. Those people have to be willing to listen. So, the best example I can give of that is: I use green paper usually, in everything. Any paperwork: green. And no matter how many times everybody around me has been told, there are still people that aren't willing to accept that I can't really read on white paper. And so, even though it would be great to have someone—. Like, I think that's the bare minimum, having someone that we can go to and then not having to explain yourself 70 different times at the age of 12, because you shouldn't have to do that. There should be something in place so that those people do know. I think it's also a bigger issue of how people need to be willing to understand or be told that there is an expectation for them to accept certain things, like that young carers do exist. It's not made up, it's not a choice, it's not a role that they've decided to take on on purpose. So, I think that, yes, that would be useful—definitely, in my opinion. I don't know what Elektra and Albie think, but I think that, also, with that, you would have to ensure that, if that was done and we did have one person to relay it to everyone else, there was a way to ensure that those people had to listen.

Good. Thank you. And Albie, I'll come to you about your challenges.

Could you repeat the question again, sorry?

So, it's just the challenges that you face on a day-to-day basis in your caring role and what you think they are and what makes it really difficult for you.

Yes, okay. So, I think that probably one of the most obvious ones is that my caring role makes it difficult for me to pursue some of my hobbies. So, it's definitely making it difficult, because I get myself involved in a lot of youth opportunities. So, for example, Ffiôn and I were part of the ministerial advisory group for unpaid carers, and then there's the Carers Trust youth council and also there's the young carers advisory board, and then I'm also chair of the school council at my school. And it's really hard. I love taking on the youth opportunities, I love having my voice heard and getting my opinion across, especially with what I'm doing now, getting the voice of young carers across, I really do enjoy it, but it's very hard to follow up with all of that stuff when my mind just feels like a hive of bees. There are just so many things going in and out, so many things to think about. I get home at the end of the day and I'm like, 'Oh my god, I've got to do this, I've got to do that.' So, I think that, definitely, one of them is the mental struggle that you have and not being able to follow all of your hobbies. I also compete in power lifting, and it's very hard to manage that on top of my caring role, because I'm training at the gym for a couple of hours after school from Monday to Friday and then, as I said before, I have to come home, cook dinner and then do any housework for my mum. So, it definitely makes it hard to follow those hobbies and there's a lot of mental stress. 

I also find it's really difficult for me to socialise in my position as well, because I feel very isolated in my caring role, especially at home. I'm always housebound. I never get the opportunity even just to go out in my local town. Obviously, I live in north Wales, so even going out to Colwyn Bay or going out to Chester or wherever it might be, I don't get those opportunities because I'm just so stuck at home and there's no-one to take on my caring role. There's no-one to take over what I do, with my dad working five days a week and my brother's just not old enough to take on the responsibility that I take on. So, I would say that, for me, the difficult things are being able to socialise, being able to pursue my hobbies and definitely having those mental struggles as well with all of those things going on in your mind, thinking about several different things at once.FootnoteLink

You said that you've got a younger brother, does it worry you or play on your mind that he'll probably fill your role one day or have to take on some of that responsibility as well?

Yes, it plays on my mind a lot, especially now that I'm in my first year of sixth form and, obviously, university is coming on my mind now. And it's got me debating whether I can go to university or not, because he's not in a position where he can take on my caring role and do every single thing that I'm doing, because it's a certain skill set that you require. You should be able to support my mum emotionally and to support her physically. I don't know whether he has the capacity for that, and so it's making me really debate in my mind whether I'm going to be able to pursue further education and am I going to be able to go on to university. It's making me really consider that. So, yes, I suppose there's a bit of worry for my brother and whether he'll be able to take that on, but there's also worry for myself as well, as to whether I can pursue what I want to pursue because of my caring role, because there's no-one who can take over from me. 

Okay. That probably leads nicely on to Lesley Griffiths's set of questions, I think. 

Yes. Thanks very much. Both Ffiôn and Albie have referred to mental health and the impact that caring has on your mental health and your well-being. Ffiôn, you said that you find that you're running on empty, and Albie, you've just been talking about the stress that you're under at the end of the day because you've got so much going around in your mind. So, how do you cope with that? How do you cope with the impact on your mental health and your emotional well-being because of your caring responsibilities, and do you have access to mental health support, for instance, if you needed that? Do you want to start, Albie?

Yes, I'll start. With regard to being able to cope with it, I don't know if Ffiôn can relate to this, but you sort of don't. You just sort of deal with it and carry on and trudge on with your day. I don't know how to word it. There's no way of managing it and coping with your own mental health. Being a young carer puts you in a position where you become such a caring person, you become such an empathetic person, you're empathising constantly with other people. You're always thinking about other people and putting them before your own mental health. And I don't know if Ffiôn and Elektra can relate—I guess, from the nodding heads, that you can—but I find that, as a young carer, you always just get in that position mentally where you prioritise everyone else above yourself and you don't have time to manage your own mental health. I'd say definitely that that's the case for me—I don't manage my mental health; I don't know how to manage my mental health.

I think there are support services in place. Obviously, there's the young carers group that I'm part of from my area, Credu, for young carers, and it covers different counties in north Wales. So, they do offer support and different activities, which is good. And, again, my school does offer—it's got a mental health and well-being support system in place, my school does. But it's really hard, because hardly anyone at my school understands young carers, understands us and who we are, because we're so—. I want to say neglected, really—we're so unheard of. And even before I was a young carer, I had no idea what a young carer was. So, I find there are support systems in place, in terms of mental health, for me, but it's hard to talk to someone that hasn't been or isn't a young carer, because they can't relate to you fully. And as a young carer, I just don't think you have the time to take time for yourself to manage your own mental health.

Thanks, Albie. Ffiôn.

I do completely agree and I think, I'm going to be honest, I hate it, being asked that question, not because I don't like to answer, but because it feels like there should be a right answer and I don't—. Although I know that there isn't a right answer, I don't feel like I have any kind of right answer, because I agree with Albie that you don't. I'm very fortunate, really fortunate, that I'm part of many projects in Wrexham, and through one of them I get counselling. And I'm very fortunate that my sixth form is very accepting and understanding, and if there's something wrong, I can always go and tell them that there's something wrong or that I need time. But 'managing it', I don't know, feels like a weird way to put it. I've had countless times where I've gone to my head of sixth form and I'm like, 'I can't do this, that and the other', and I've cried. That woman has seen so many tears, I can't believe it, but there have been so many times when I've said, 'I just can't do this', and she's like, 'That's fine.'

She supports you.

Yes, she's there. But there's nobody or nothing that I think can fix that or help you manage it, in a way. Obviously, you do try to do your own thing—I like the ukulele, and that helps me in my own way, but that doesn't fix it either. And also I think one of the hardest things, even if you were to ever try and manage it, is that people don't understand.

One of the main examples that I have within school—I'm going to say it, even though I know we're not on that yet—I remember going to my teacher—we had a piece of coursework—and saying, 'Listen, I can't do this right now. I can't do this coursework. You're going to have to fail me. If you do fail me, that's fine, but I need you to know that I just can't do this right now.' And their response was, 'Well, you have too much on your plate and you need to take things off your plate.' And I was like, 'It's very bold of you to stand where you're stood and say that to me, because it's not a choice to take on the things that we do take on.'

And so, I don't know, again, I'm not a big fan of the question, because I don't know how I manage it. You do just go on, like you said and like I said, you're just running on empty—it's not one of those where you stand there and think to yourself, 'Oh, I'm having a really tough day mentally—what can I do for myself?' You don't have that. For me, anyway, I don't have that kind of moment. You're like, 'All right, okay, not feeling great', but that is what it is, and what? There's nothing. You still have to keep doing whatever you're doing, you still have to keep taking this stuff on your plate. It feels like acknowledging it isn't going to take it away. So, sometimes, I'm like, 'What's the point?' It's like what Albie said, you are just constantly—. Even with things that aren't my caring role, with friends, I'm the person that is always there and is like the brick. And I don't think there's a switch where you can just turn that off.

Thank you. Elektra.

I think you'll both agree when I say this, but how do you try and manage something when you don't have time to manage it at all? You'll always say to yourself that, ‘Yes, I'm managing fine. I can carry on, I'm doing fine’, but then, the second anything could stop, you realise that you're not managing it, you're just going through it. As Ffiôn said before, you're running on empty, and as a young carer who wasn't noticed for a decade, it was pure manic. I had no coping skills, I had no support, and this had been going on since I was about three or four. I got into the young carer system last year. I'm now 15 and I went a decade. And prior to that there was still nothing of a young carer and what that was or what it could look like. And yet when it came to my assessment, I realised that so many of my things and what I did wasn't me coping, it was just me going—and accepting that I didn't have time for myself; I had time for my sister and for my brother and that was it.

When it comes to looking at coping skills and how I manage it now, I would say I manage it better. I wouldn't say I manage it fully, and I don't think I ever will, but having my youth worker and having that opportunity to go to counselling has made me a much better person when it comes to coping, because prior to this, I would shut down. It is definitely, you look at it and you either sink or swim. It's the only way to explain it. And if you get to that point where you can't run on it any more and you're just finished, then you can't care for anyone else and you can't even manage to care for yourself at that point, because it's too much energy.

How, as a child, can someone keep managing and keep coping, when they haven't been taught what a young carer is and how to cope as a young carer? It's not a term that's heard of often, especially when it came around to my school, it still wasn't known as anything. My friends don't know what a young carer is, and it's quite difficult trying to explain to my friends that I'm a young carer, so I cope in different ways.

When it comes to my education, I feel as if managing how I feel, how my brother and sister are, and then how anything education-wise is, is so difficult, because you want to be great and you want to have that time to focus on your studies, but you also want to have that time to focus on your siblings and then you kind of forget about yourself. You can't have that moment and go, ‘Okay, I'm struggling a bit, so maybe I can take this off or maybe I can take a break from this.’ You can’t; caring is a full-time thing that you do, and it is multiple days, multiple weeks and it will be constantly.

My brother: he is my world, don't get me wrong, but when it comes to things like managing myself, it's not managing myself, it's managing him. ‘How am I managing Blake so far?’

You've all referred to not being able to—. I think, Albie, you said you couldn't do your hobbies and activities, and also that you feel isolated because you're unable to go out. What would help you? Is there anything that would help you be able to prioritise some time for yourself, to be able to do your activities more, to be able to do your hobbies more, to meet with your friends more? Do you find that your friends, because you're having to change plans all the time, I would imagine—? Because as you said, Ffiôn, every day is different. What would help you? Is there any one thing or two things that you can think of that would help you in your everyday life from that aspect?

I'd say one thing definitely for me, I think, that would help support all those difficulties that I mentioned is more awareness of young carers. I think that's just the crucial thing; it always comes down to that. I got the unique opportunity the other week when it was Carers Rights Day to do assemblies, and present in front of my school and talk about young carers, about who young carers are and how to identify yourself as one, and I think that itself definitely had an impact. The numbers in my local young carers group tripled because of that, so I think just that small thing I did showed a difference. And I think if that could be done on a national level, where so many people, teachers, staff, employers were all made aware of young carers, and how to recognise them as well, by seeing those signs of lateness or seeing that sleepy face of hardly having any sleep or always looking anxious; I think being able to recognise the sign of a young carer and knowing how to help them, knowing to refer them to certain support groups or knowing what to say to them, I think that would be such a key thing. More awareness of young carers, and teachers and employers knowing how to approach young carers, I would say that's a definite thing.

Thank you. Ffiôn.

I would agree, especially, obviously, you said—. For me, growing up, it was a matter of—. When you start cancelling things, or changing plans, people stop inviting you. I think, with most young carers that are aware that they're young carers, the people that they hang around with most are other young carers in the groups that they go to, and that's because that's an environment where everybody is going through something similar, or has certain experiences, or at least understands what you're going through. Whereas in school, in any other youth group or just any settings with friends that don't have that lived experience, the lack of understanding is the thing that seems to cause the isolation, because, as I said, when you cancel things, people stop inviting you.

We're taught in school about things like people having differences, whether that be physically or in any other way, we're taught about—. Well, we're taught to accept those differences, and we're just taught about a range of different things, but, in my experience, never on that list of any kind of personal and social education day have young carers been a thing. In organised assemblies, unless it's like Albie doing it or local organisations that aren't funded nearly enough to be doing that much, nobody's actively making an effort to give assemblies on young carers to year groups to explain what that means. And why is that? Because there are so many young carers, not just in Wales, but on the planet, yet even young carers themselves don't even know what that means.

I remember, even after I was registered, I still had no idea what that meant. I had no idea. Even the words meant absolutely nothing to me at that age, because I didn't know what it was. But if somebody had sat, taught me, told me and gone through it with me and gone through it with my friends, then I don't think my caring role would have had such a big impact on the social aspect of my life, because I think the more you understand people, the more you're willing to, not cut them slack, but cut them slack. If you understand, you're not going to be like, 'Oh, well, let's not invite them again', or, 'Let's not do this with them.' You're going to be like, 'Oh, they've got this going on, but that doesn't mean that we shouldn't extend the hand to them.'

So, I do agree with Albie that the main thing is just an awareness thing. It's one thing to say we need to put this, that and the other in place, and that's absolutely true, but one of the main things is it's baffling that people still don't know what a young carer or a young adult carer is. That is absolutely baffling to me. I was very fortunate, I trained some student nurses yesterday, so that, basically, when they go into the field and they're working with families or young people, they know what to look out for, and they know those signs. But one of the questions that was asked—this relates to what Elektra was saying, so I do apologise for going a little bit on a side ramp—but someone said, 'Oh, so, do all young carers, no matter their age when they're registered, or beforehand, do they get training for their caring role?' I was like, 'Sorry, do we get training? No.' It is sink or swim. You get thrown in and there's nothing that prepares you, and I think if people understood that and understood even just slightly what carers, young carers and young adult carers were going through, it might just make getting around in the world, socialising and getting the support we need just a little bit easier.

Thank you. Elektra. 

It's very similar to you, but, again, it's just having that awareness of who a young carer is. When I got registered as a carer, it still didn't click with me, because it gets normal after a while, caring for that person or those people constantly from such a young age, and then, when they give it a term, it doesn't click with you and it doesn't for a while, because you go, 'But this is normal to me, why isn't it to other people? Why don't people understand this?' And I've had a similar situation and I've gone, 'Oh, it turns out I'm a young carer' and my friends have gone, 'What's that?' or 'Oh, so you can just stop caring because you've been registered, right?' And that is not the situation at all. It's always been something that was never clarified or never looked upon, especially during school.

School was always difficult and I've gone in to lessons and I've been like, 'Sorry I'm late, my sister had a seizure', or 'Sorry I'm late, my brother really needed me', and they've gone, 'Yes, but where's the adult in the situation?' And I go, 'I am the caring adult in this situation, unfortunately.' Looking at that, it frustrates me because there were so many times that I could have been recognised. Kids in my school should have been recognised as young carers, and when they weren't, you just realise that we don't get enough recognition at all.

Even when it comes to medical training or teachers being aware of young carers. I've had multiple teachers look at me and go, 'What's a young carer, sorry?' I've had pharmacists go, 'Are you sure you're a young carer?', and it baffles me, because they're trained for adults, children, everyone, especially in an educational field, and they're still not aware of what a young carer is, even though they're supposed to teach young carers and support them.