Robert’ You have got to go and look for it although, when they tell you this is the number you phone then a lot of people might not phone it because they might be too embarrassed or they don’t want to or they just want to crack on and, so you might as well take all the help that’s out there because it’s there.

But we’ve pushed it haven’t we. it’s like when we took, when [name] was taking her down the hospital going, I’m not happy with the GP saying she’s got growing pains And we just kept pushing it. So I don’t know, if I was honest with you, the information is out there and if people aren’t getting that information, I’m not going to say it’s their fault but then get on a computer, phone people up, there’s helpline support out there. Citizen’s Advice Bureau, everyone knows.

Karen’ They were really good.

Robert’ There’s a phone number for that in the Yellow Pages. They’ve been there years, haven’t they.

Karen’ They were very helpful with the disability, they filled the forms in for me.

Robert’ Obviously, yeah.

Karen’ Helped me, not filled them in, helped me fill them in.

Robert’ We filled the majority of them in and he just.

Karen’ Yeah.

Robert’ Checked them and said, Put that in, put that in, that bit there might help you

Karen’ As for the Blue Badge bit, you said that people had asked you about that, that that’s your local council. That that’s you just phone your local council and they’re the ones that decide whether.

Robert’ She’s even got, I don’t know how she got it, but she’s now got a cinema ticket to get in the cinema.

Okay.

Karen’ Yep.

Robert’ If she goes, is it the carer?

Karen’ Yeah, the carer gets in free to the cinema.

Robert’ it’s something to do with the cinema association or the guild or whatever because they’re then showing that they’re complying with the disability act of 2010, which used to be like disability discrimination act isn’t it, but they’ve now enshrined it into all the other ones.

Karen’ And then there’s also the trains. She gets.

Robert’ She’s got disability on the trains.

Karen’ A discount on trains.

Robert’ But then Charlotte’s got.

Karen’ But that’s pure luck we found that one because I was looking for ways of getting her a cheap travel card to go to college.

Robert’ Because a student railcard, can’t use it or get discount.

Karen’ Before nine o’clock in the morning.

Robert’ So when do student’s go to college.

Karen’ So pure luck.

Robert’ At nine o’clock in the morning. So it’s pretty pointless isn’t it?

And what about financial support? Do you receive anything?

We was told that Chantelle may be entitled to disability living allowance because one that she got deafness in her right ear, two she’s got the Juvenile Arthritis plus the other complaints as well with that she’s got, and they put me, gave me forms and sent them off, and Chantelle does get Motability and Disability Living allowance.

Has that been easy to get hold of or has it been difficult?

It was difficult at first. It was difficult. But I get the same. I have it already through the diabetes and mine took me three years to get mine. And mine was, my GP in the end, I mean I’ve had mine for years now but my GP in the end went to a disciplinary hearing and told them straight. Put everything on there and says, There’s the tests Cos mine were all electronical tests that proved it, so it showed that I wasn’t faking anything. And he says, How can you give people that come in here and there and from everywhere and they fake this, they fake that, and they get everything. And this woman’s been deniedrdquo; But I got it in the end.

But Chantelle’s was a long struggle cos I did try to claim it before for her, even lost when she, cos even though she’s lost her partial hearing, and she couldn’t claim it, I had to make sure she was safe and things like that, and somebody said to claim it, but they wouldn’t give it her. But when she got the Juvenile Arthritis a lady at the hospital showed me how to fill the forms in, what to put, every bit of medication that she had. Difficulties that she had to get dressed and everything, and the help she needed. So we done all that together and they did give it. At first they gave her low rates and it was the lady at the hospital says, No, that’s not right. they’re just palming you off And then writ, she like writ a letter to say that she didn’t think it was right could they look at it again. They looked at it again and they gave her high mobility and middle rate carers. And that, but now she, because of her having to have hands on spasm treatment cos of her back and everything else now she gets high carers allowance as well. She gets everything high. But they have said that when new laws come out or something she may have it taken off her so depending on that.

What do you do for fun, recreation?

I usually, now that I’ve got my car I love going out for a drive and I can spend some, a right load of money just on diesel just going out for a drive. Because I’ve spent most of me life in house, now that I’ve got a car I can go anywhere, do what I want. I like to go out to do a bit of karaoke with me friends and that. So that’s always a good laugh as well and I know that if I do go out usually, the following day I can’t do anything because I’ve tired myself out but I’ve had a good time so I don’t mind.

What’s it like having a car then? What’s it feel like?

it’s opened my life up a lot. it’s changed so much since I’ve got a car now. I’m very rarely at home now. I’m always out somewhere. I can go and meet new people. I can actually go out to my friends instead of having to wait for people to come to me because a lot of my friends are in [town], which is, it’s not in walking distance really so I can always just go and drive to my friends instead.

And that’s the only help I’ve ever wanted to have because I don’t need money for pain, that’s how I’ve always saw it. Like, you know, it hasn’t stopped me from getting on with my life and getting a bus or walking to work and maybe I could have let it go that way and taken all the benefits in the world but I’m far too honest for that and you know, and I just think for me it’s taken a while to get over it as well. Like I’m not going to go and get a blue badge for my car because oh I’ve got a little bit of arthritis in two elbows. I mean that’s not really affecting my parking now is it? Because I can park far away, I can still walk. The only thing that I have trouble with is I have to ask friends to come and carry my shopping some days or I can’t do big shops but I live on my own so it doesn’t, you know, you live to your needs. So yeah I’m quite, yeah I never used to be so open about it and I probably, if, given this, you know, three years ago I probably would have just sat here and gone, ‘Don’t want to answer that, don’t want to answer that,’ but now it’s kind of like, ‘Well actually, you know, people might benefit from having kind of an open and honest, you know, it’s shit, it hurts, you get on with it and if you don’t get on with it, it gets even worse. So yeah. And I’m two degrees later, about to hopefully finish a third in four years’ time. A first and a distinction may I add, big head out. The first in my undergrad and the distinction for my Masters and that takes an awful lot of work.

What about the university? Do you get anything?

They help me a lot. I’ve had something called a DSA report so I went along and got assessed and they gave me a laptop that was portable and lightweight so I wouldn’t have to sit at my PC at home every, all like rigid. So I can move about in my flat. They gave me a Dictaphone so I record like lectures without having to write things up. They offered me other things like extra time in exams so you get like an extra half an hour and that also includes time for you to sort of get up and wander about if you have to. I get the use of a computer in an examination so I don’t have to write everything down to save my hands. They offered library assistance and they offer, well, SAS, that’s the students awards agency, they offer paying for taxis so if I can’t get to and from they can put on that for me and pay that for me for the year. I haven’t used all of those things yet but they’re certainly there and in place and if I do want to use them then I can, which I think is fantastic. I missed out on all of that college because I didn’t want to tell anybody what was wrong. So it’s nice in a way, yeah. it’s nice to have that there.

So what kind of things do the University do in relation to your arthritis to help or support you?

I got disabled student’s allowance one year.

Can I ask how much that is? Is that personal?

No this is the thing. It’s, they don’t give you a lump sum, they give you things
I see OK

nd this is what I didn’t realise at the time and I did go along with it because I thought it might, might be useful really. I got that chair out of it that’s worth about £600 and it’s basically, it has loads of different gadgets and it’s meant to be really supportive for your back so obviously if I’m sat working for a long period of time then it can get quite bad on my neck and my back and that chair does help. But to be honest I would have found money more useful and I know that sounds really shallow but the little things that, like I, up until about a month ago when it completely broke down I had a car and I’m struggling to manage without a car because, for example food shopping, I can’t do that – I have to buy things on a daily basis pretty much because I can’t carry lots of shopping.
With a car I was able to do that. Getting to placement, walking long distances is a bit of a problem for me so even walking to the hospital where I’m on placement at the moment, it’s only up the road but it will take me about forty five minutes and if I did that every day there and back I’d be exhausted so just being able to drive takes that away and also means I can have that extra time in bed as well which, as I was saying, with my energy levels every little bit of extra minutes sleep really helps. So really I was hoping that I’d get something like that of it that could help me run a car for example or that kind of thing but I did, I did get some useful things out of it. I think you have to apply for it on a, you have to keep reapplying for it and I just couldn’t really bothered because I didn’t really find it that worthwhile.

No same. We’d had the same. They said that we could have a ramp for the front door but that’s about it. All the rest because I worked, my husband worked, all the rest was up to us. So we had to, the first chairlift cost us two and a half thousand pounds which we didn’t have, we had to get a credit card and then buy that on a credit card because she needed it. And then the second stair lift because the first one broke , I got a good deal on that one, because I thought I’d been ripped off the first time, we got the second one for about nine hundred pounds. It was still a new one but that was when the hips started again because we hadn’t used the other one it sort of died a death didn’t it? So we had two, so we paid for them ourselves and everything else apart from the, you know, the fact that Jessica gets disability and stuff like that. All the rest we’ve always paid for and we didn’t even know about DLA and stuff like that when; it was only the nurses again, the homecare team that said, "Do you know you can disability for her?" and stuff like that so we wouldn’t have been aware of any of that.

Well, I was embarrassed to be honest, I was very embarrassed. But I think they should have told me before I was going that I was expected to pay for it because I’m getting, I was getting shown round all kinds of different equipment for the disabled but specifically for Ryan and his bath and they’re telling me, No, he needs it they’re telling me which one he needs because of his problems, that turns out to be this specific one which costs £350. I aint got £350, I didn’t take £350 with me, I wasn’t expecting to have to pay this. I felt embarrassed to say, Well I haven’t got the money to get this I said and they went, Well you could get this for now and this for now and I’m going, Well how much, I can’t so I just, I was kind of, Well can I come back and buy this if I want to Do you know what I mean; I just didn’t know what to say to them. I thought, well, you know. I, where did they think I was going just turn up with £350 to buy that with. That was just the one item. There were a few items Ryan actually needed from there. it’s like they were taking me on a shopping trip. I thought, they’d think I’ve got a Gold card or something, you know. But I was really embarrassed but I was mostly embarrassed because it’s a case of they’re telling me my son needs this and I know my son needs this but it doesn’t matter how much he needs it, doesn’t mean I can afford it if you know what I mean? So, and to put me in that position where I have to say to them, I can’t afford it and then they tell me to ask a charity. No. I suppose some people would but that’s not the type of person I am so.