Hello, I'm Paul Evans and welcome to Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and healthcare professionals. I'm Amy Berman. I'm Sophie Tarrall. I'm Adrian Griffiths. I'm Tom Hall. And where are we today? What are we doing? I can't pronounce it. Can anyone pronounce it? We are at the Welsh International Climate Centre.
Oh, yeah. It'll all become clear in just a moment. Now, according to the last UK census, that was in 2011, there were just under 178,000 young unpaid carers. That's five to 17-year-olds in England and Wales. Overall, Wales had the highest proportion, with more than 11,500 young carers. Two years after that census, the Welsh Government set out its Carer Strategy for Wales, in which five priority areas were identified. Health and social care, identification, information and consultation, carers and employment, young carers and young adult carers, and support and a life outside of the caring role.
And it's those last two priorities that bring me here to the county borough of Rhondda Cynan Taff. You hear it called RCT for short, in what was the heart of the mining and iron industries in Wales' southeastern corner. Amy, Sophie, Adrian and Tom are amongst the 30 or so young and young adult carers on a three-day residential, activity, social and education break. So what's in store for them? What we're doing is sexual health, fire safety. Alcohol and drugs away. And all I know is on Thursday we're doing caving or rock climbing. Yeah, I'm doing something about that. But you're all young adult carers. I'm a young carer.
Yeah, at the moment. I'm only 17, but I'm 18 in August. So who do you care for? My mother. Why does she need caring for? Because she has pulmonary hypertension, which is basically clots on the lungs. She had an operation for her, but her chest is like that much open now. And it's opening slowly because she had infection when she came home and they took the bars out without telling her. And now her chest is basically like that. And you could, don't believe me, I've never tried and I never want to and no one else. But she said she can feel the gap and if you wanted to, you could poke down and feel her out. What does being a young carer for your mother mean to you?
It means I have to do more caring than other people, basically. So whenever, like, people say, oh, I want to come out, I say, I go care for my mum. And I don't mind doing that. I'm not one of those people that say, oh, I hate caring for my mum. I don't think any of us mind. No, I'm just saying, like, me personally. But the only thing I don't like is when, like, your friends say, oh, do you want to come out? And they go, no, I came from my mum. They think it's just an excuse. Yeah, I've had that before. And, like, the only faraway place I've ever gone without my mum is Thor Park in Drayton Manor. And that's basically, like, one day. So your mum is reliant on you? I do care for my mum a lot, but say I'm not there.
My sisters will do it for me because they're here as well. She does do something for herself, even though it kills her to do it. If my father's in work and I'm not there to help her and neither of my sisters, she'll get up and do the washing and do whatever she needs. We'll come home and she'll be there doubled over, breathing heavily now. What upsets me is she'll do all that and then she'll be there in pain and she wouldn't have asked anyone else to do it. And that's why I love her so much. Aww.
My name is Keris Olsen-Jones and I work with young adult carers in RCT. So that's carers who are caring for a parent, a neighbour or relative who's got some sort of disability and they have to be between the ages of 18 and 25. So young adult carers start at 18. Yes. But there are people a lot younger than that. They're young carers. Young carers, yeah, that's right. And we've got girls in our team who work specifically with young carers then. We're in the borough of Brontha Cynontarf, which is the industrial southeast of Wales, the most populated part of Wales. Now, tell me something about the Young Carer Project that you're involved with. So the Young Carer Project basically involves us as a team going out and taking in referrals and then going out and doing assessments on the young people to establish their needs and the needs of the family because we cater for the family unit.
We then commission a project that Action for Children Run at the moment, and that gives each young carer an opportunity to go to a group and meet up with carers in similar situations and of a similar age on a weekly basis. To be able to go to the project, they have to be five years old, and then they go to the project until they're 17. Although we have experienced and done assessments for people who are younger than that, children that are younger than that and have some care and responsibility, but they're not able to access the project until five years old. Five years is incredibly young. What issues do they face? Oh, it could be anything from putting the washing in, because mum's not able to bend down to put the washing in the washing machine, or mum's not able to turn the dials on a microwave, so maybe doing that. We've had some people who have helped mum up the stairs. There's loads of different situations we've come across, and, you know, as young as five years old. What's your name then? My name's Leon. How old are you? Fourteen. Who do you care for, Leon? My mother. What's the matter about her? She suffers with depression.
She's got anxiety, so I have to go places where it's all she feels safe and I have to look after her around the house. I go places with her, like shopping, because she cannot go all day on her own. And I help her clean the house and organise things. Do you feel you miss out on things because you're looking after Mum? I don't go out much because I look after her. But I've started finding out to look after her and go out to places with my friends. What does Mum think about the way you look after her? She finds me very helpful.
It's a good job to help her as well. If not, I don't know, she'd be even worse. So what's it like coming away with other young carers like we are today? I think the young carers is a really good operation because you get to get taken out from places and you get to be accompanied as well. You get to find new friends. This is my first time here and I've found two, three new friends already. It's really good, it is.
Good way to get out to the house. And they also do support them, helping your parents and that. Just a bit to challenge you guys a bit and get you guys thinking a bit more about problem solving, team tasks, all that sort of stuff. My name's DJ and we're here at a place called the Summit Centre. It's a big climbing wall which does loads of activities like what we're doing right now, which is the team building tasks. And it's a lovely Welsh day, as all things is, overcast with a slight chance of drizzle. And we'll see how it goes. On your marks, get set, go! They're all very shy and quiet at the moment. Yes, yes, indeed.
Probably the first problem that's around is the lack of communication between the guys. So we'll work on that and see what happens. I don't know why any of your mothers or whoever you care for is like, but to me, no one can compare to my mother. Nah, same, yeah. Or my brother.
Wouldn't change them. So you look after your mother? I look after both my mother and my brother. My father's not on the scene. So I don't think I could change what I do now. Even though my mother's ill, the only thing I would change is obviously to make her better, but I wouldn't swap her for the world. I wouldn't see. I know my brother's got autism and my mother's got depression and all that, but I wouldn't swap their illnesses either, to be honest, because otherwise I wouldn't have the memories I've got. When you say you wouldn't change anything because you've got all those memories, what do you mean? I don't understand that. It's like my brother has autism, so he can go forever talking about a specific car or something like that, or he can...
do these random things. It's like he sings to his radio up in his room, and when you come in, then he'll immediately shut up and shrink down in his chair. But it's stuff like that. And when he's on holiday, he can do completely random things. He can be sitting near one minute, and then he'll get up and start dancing. And his memory's like that, same as my mum, even though she's got depression. She can have a day where she's on her ass all day, and then one day she'll just suddenly laugh at something on the TV, and we'll laugh for an hour. And it's stuff like that I wouldn't change. Because if they were normal, you get what I mean? I wouldn't have those memories of him. I wouldn't have my brother in the school play spraying his teacher with a silly string. You know, so...
That's every kid's dream, isn't it? Oh, yeah, and his head teacher came up to say, this is the end of the play, and he just went, like, I'm really young. But if he didn't have autism, I'm not saying he wouldn't do that if he didn't have autism, but I wouldn't have that memory. Yeah, same as you, with all the memories, I wouldn't change them for the world. I wouldn't change them anyway, because then I wouldn't get to come here. And this is actually quite fun, and I've met a lot of people that I wouldn't change either. It's like Deb. She's a worker, by the way, very stubborn young carers. I don't regret meeting her for one minute. I know, I tell everyone who's met her, I reckon she saved my life. Because when I first joined her, I'm not, I ruin this person. Who's Deb? She's a young carers worker. She was my first key worker.
and when i came on to young carers i wasn't the person i am now i wouldn't talk to anyone i literally i just sit and stare at a wall all day and i met deb and she sort of just she just sort of takes you and goes right you're gonna do this and i'll be there with you it's fine and she brings you out of your shell and that's why i say she's literally saved my life Communication. Listening skills. What else? Understanding each other. All right. All of us knowing what we're doing in the plan of things. Definitely a good one. Okay, with that in mind, I'm going to tell you the next challenge. Basically, you've got to stand behind this. Can I guess? Yeah, go for it. Perfect. Yeah. The ball is not allowed to stop moving. If it stops or starts going backwards, we're restarting. Have the other team stopped? I know, they shouldn't have. Got to keep the ball rolling. Rolling, rolling. Everybody happy? Yeah. Okay. I'm not unhappy.
OK, so what I want you to do, have a little chat and then work it out. You're going to do it. Have a little play and I'm going to time you to see if you can do it. I was suicidal when I first came on here. I was going through a lot of stuff in school with being bullied and all that because of my brother and my mother and everything. And then one of the teachers in school recommended young carers. And when I first went on, Deb came to my house because I remember she was wearing this top with the queen out of Snow White. The wicked queen. She had that on the front of it and that's what I remember. I was just looking at her like, she's like the same age as my mum and she's got the wicked queen on her top.
I just came in, and then the first time we went out, I was really quiet. I didn't want to talk to anyone sitting here like that. And she took me into the house, the big house. Everyone knows that. And I met this group of boys who were honest to God about the dullest people I'd ever met. Because we were all just sitting here, Deb, just going in the middle of the room and going, right, come on, this is Sophie, this is...
Jim Bob or whatever. And she got us all together. And then it was just like I'd been there forever with them. And I still am friends with them now. I'm still friends. Everything with this has done a lot for me. I got into college through Young Carers. I got my best friend. I got my first boyfriend out of Young Carers, even though that's a bit embarrassing. Yeah, oh, shut up. Have you heard me talk? I'm always personal. I got 50 sheds of grey women, for Christ's sake. That's another thing. That's gone, I don't know.
I've gained a lot from being on this call. This project does change you. It does change your life. My personality was similar to yours. Until someone talks to me, I wouldn't talk to anyone. And then obviously Debs, Becky and Leandro got me out of my shell basically. I met you lot and already the first half an hour we've had one other laugh. I was exactly the same before I started with the project. I didn't really go and talk to anyone. I just stayed to myself. I've been on quite a few of these residentials and other events. I've enjoyed it and it's really...
Made me who I am today, basically. Who do you care for? I care for my mother. She's got MS. She's got MS, multiple sclerosis. So what does that mean to you? I'm not really sure where to start with it. Does it isolate you? I think anyone who cares for someone they live with, it isolates them, no matter what it is. I suppose it does, in a way, yeah. I mean, when I was caring for my father, admittedly, my father was in his 80s and I was in my 50s, the whole focus...
of your life changes. You can't actually think what's changed, but it has. Do you agree? I've been caring for him since I was about six, so I didn't really realise. I thought it was what every kid does. And I think a lot of carers feel that. I think that's why not many people come forward about it. You've got to have someone realise you are a young carer before you do. Because I thought, oh, every kid's doing this. Every kid's looking after the man when she cries. So every kid's helping their mother bath their brother out. But how many children have seen their parents cry? I certainly haven't. Yeah. They break my heart when my parents cry. Yeah. It's like deep down, that's part of the reason why I care for her.
I was going to use the word burden, but it's an incredible responsibility on somebody that young. I think it's important to stress that lots of young people that we work with don't see it as a burden. They see it as part of their lives. They've always done it. They enjoy doing it. Often carers find that they've got a really close relationship with a person that they care for because of the responsibility that they take on. It does have an impact on their life, on every aspect of their life.
generally the young people are happy to do it and feel that they're doing something valuable. The people I've spoken with today, what impresses me most is that they seem incredibly mature beyond their age. Yeah, they live in really the lives of adults as young people. And that's because they have to, because of the situations they live in with at home. So yeah, they are incredibly responsible in many aspects of their life. But of course, because of the responsibility they've got in certain aspects of their life, they miss the opportunity to be children. And sometimes you'll see older carers who are quite childlike in their ways. We can hear it now.
Yeah. Yeah. But that's another thing about this week away. They're allowed to be children. Yeah, yeah. And, you know, we encourage them to mix, to socialise with people they haven't met before. We do team-building events where we, you know, make sure that this lit up from the people that they know so that, yeah, they develop, you know, those relationships then with others. They don't really get to mix and socialise much. As a group, they're quite isolated. So it's quite nice to give them that opportunity to just be themselves, forget about any stress, any pressures at home, and just enjoy their time here. Go, go, go, go, go! Go, go, go, go! Go, go, go! Go, go, go! Go, go, go!
Instead of us all running at once together at the end, we just take it in turns to go, you know, instead of us all going. My sisters were in school and for some reason I was home, I don't remember why. And my mother started crying and we were shouting, what's wrong? And she said, like, my chest feels like it's coming in. We called my nan and my sister and they came up and then the ambulance came and she started bursting out crying because she doesn't like going to the hospital. That's what got me upset. So I went around and my older sister comforted me. And then when I went down the hospital in the afternoon, the doctor came in and he basically said, like, it's touch and go. And, oh, sorry. Sorry. Don't cry, don't worry. It's fine.
Well, basically, she was in there for two weeks, and for the first week it was obviously touch and go. Like, every day I was crying because I didn't, like, I love my mother too much, and I wouldn't want to lose her, and I dread the day when it happens. When I saw her in the bed in an intensive care, and she had this, like, wire sticking out of her arm, one in the side of her chest. She had a thing going up, like, up her nose and down to her bronchioles, and she also had a gas mask on. And as soon as I walked in, I burst out and I walked back out because I can't see my mother like that. But now she's doing fine in her house and I'm very happy. And when they finally rectify her chest, she obviously slowly gets better. How do children come to your attention? Do they have to apply?
Does it get spotted in school that they're under pressure? More and more it's getting spotted in school, and that's because of the training that is being developed and implemented in schools at the moment due to legislation that's coming in Wales called the Carers Measure. So more and more referrals are coming from school, but we get a number of different people, nurses, GPs, friends, you know, anyway really, can make a referral to us. We just need their name, their address, and to know that they're happy for us to pop along, we may contact with them and go and do the assessment from there. But anybody can refer, really. So what do you assess? What's the process?
So there's a difference really between young adult carers because they come under adult services and young carers or under children's services. But the assessment process basically involves looking at the family situation, the family needs, looking at the carers responsible, so the young person's responsibility in the house, seeing if that's an acceptable amount of responsibility or not, and then putting things in place in order to support them in their role. And obviously if it's an unacceptable amount of caring that they're doing, then we've got to look closer into that and get additional support and different services in place for them. Can I just ask you who you are, what your names are? Emma Courtney. You're both young carers. Tell me what that means, who do you care for? I care for my mother because she's disabled, she can't do anything for herself. She depends on me, my father, really. In what way does she depend on you?
Everybody going, getting dressed, having a bath, going to the toilet, everything. How old are you, Courtney? Fourteen. Do you get out to play with your friends? Sometimes I get out, like, on the weekends, sometimes, when my father's here. Emma, what's it mean to you? Well, I care for my mother and my father. They're both classed as disabled. They both depend on me. I hardly ever go out, because obviously I've got responsibilities. How important is it to get away with other young carers in a week like this? It's alright, like, because it's like a break, but I do still worry about my mother, like, if she's got in.
How did you get involved with the Young Carers Project in the first place? I know you're young carers. It was from my school because they were asking me to do E3 and obviously I couldn't because my mother and father are disabled and they needed me there. So it was the school who put you in touch with the Young Carers Project? Yeah. I'm a social worker. You're a social worker helped you? Are you glad you did? In a way, yeah. Because there's like a break when I've been and things. Good afternoon.
My name is Julie Goodfield and I'm a Home Fire Safety Advisor for South Wales Fire and Rescue Service. My main job is to visit homes within the South Wales area and generally talk about reducing the risk of fire in a home. So what are you going to tell young carers here today? It's little tips really to look out for. The first important one is check that they do have working smoke alarms in the property. And then we talk about cooking methods and making sure things are switched off, etc. and not left unattended. But we also talk about what would you do in the event of a fire.
and it's good practice to keep exitways clear, especially having a night-time routine, making sure everything's switched off. In most circumstances, I would advise ringing 999, getting out of the property as soon as they possibly could anyway. But things like overloading electrical sockets, a lot of people don't seem to be aware that a 13-amp plug, anything more in there could be a bit of an overload. So it's just general safety tips and advice. about keeping safe in the home. And is it more pertinent to young carers? It's important for everyone just to take on board fire safety within the house. And I think for young people it's good because they can advise perhaps the older generation, especially with electrical sockets, that perhaps there's too much amperage being used. And things today like mobile phone chargers and the Skyboxes, yeah, Xboxes and games. Let's just chuck it all into one socket and happy days. But, you know, if you've got a lot of heat there, it's good advice again and safety tips of, right, we better spread that out.
rather than it causing the fire. I suppose one thing that you have to get across is that if there is a fire, don't try and fight it. Exactly, yeah. Try to prevent the fire from happening in the first place. So we discuss issues like cooking methods, candles, the plug-in things that are left on, like air fresheners, they can actually shatter as well. Get an escape plan in their minds, but in the event of, never tackle, because it can spread so quickly and so fast. And we're talking, you know, under a minute. And unfortunately, especially at night time, when it's not visible, smoke can kill before the actual fire.
So it's always good to test your smoke alarms regularly. We do try to say test them once a week, but if they just test them regularly, just to put their mind at rest that they are working. Have you all got smoke alarms at all? No. No? Yeah. How often do you think you should test them? Every 10 years. Once a week. Every 10 years? That's true in many aspects. But once we give up, come with a 10-year battery. But it's still good to test them.
Once a week, if you get into a little bit of a routine, have anyone been involved in a fire? Are you happy to talk about it? Tell me your name. Ethan Mason. And you're a young carer. Yeah. Who do you care for? My care for my mother. She's diagnosed with fibromyalgia and Emmy. So she finds it quite hard to go day by day and that. So yeah, I have to care for her, look after her and that. So how does she rely on you? Well, because she finds it hard to get up in the morning and finds it hard to do simple tasks. I have to help her with certain things. I have to help out around the house, look after my siblings and stuff, yeah.
How old are your siblings? One's 11 and one's three. We just had a talk from the fire safety officer. You were saying that you have had a fire in your house. Tell me something about that. In the kitchen, there was an electrical fault and a fire started. I walked into the kitchen and obviously the flames were getting out of control. So I had to grab my sister and take her out of the house. Plus my mum was sleeping at the time because she was unwell. So I had to get her out of the house and I had to bring the fire service to come and put the fire out because my mum was unwell at the time. I had to get both my sisters out and try and protect them from the fire.
Some of the children and young adults I've spoken to today have incredible loyalty and love towards their parents. Oh, yeah. Oh, definitely. You know, it's like a mother's love, really, but it's the child experience for the parent. It's because they cater for lots of their needs. You know, they play that parent role to an extent, and because of that, they've got that loyalty there, they've got the love there that any parent would have. It's almost role reversal, really, to an extent. The education side of sexual health, cooking.
fire safety. That all sounds very serious, and it is serious, but the impression I get is they're getting an awful lot out of just being together. Yeah, oh yeah, the opportunity for them to get together, meet other people who are in similar situations to themselves and have had similar experiences is really essential. Having the young adult carers here also shows them what life may be like for them in a couple of years' time when they hit that age, and really shows the young carers that they can continue with their education, they can go to college, and life doesn't stop because of their caring role. My thanks to all those involved with the Ronitha-Cunnan-Taff Young Carers Project in South Wales. Don't forget that you can still download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you'd like to put a question to Pain Concern's panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter or even pen and paper. All the contact details are at our website which is painconcern.org.uk
And whilst we believe the information and opinions on airing pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. There's more information on and for young carers in Wales at childreninwales.org.uk. That's one word, childreninwales.org.uk. One last question. How important is it for you all to get together like these residential courses? Very. Very. Honestly, I'm going to sound sloppy right now, but if I didn't have these lot to cheer me up, I honestly wouldn't be happy. If it wasn't for this, you wouldn't know how other people felt and you'd feel like you're the only one who's doing this. Or in your case, you think everyone else does it as normal. I don't think any of us would be the people we are if we didn't come to things like this. If it wasn't for this, I wouldn't have the confidence for the college.