My income has been reduced by a third. I’ve had to go and buy myself an automatic car because I was struggling so much driving so I, I had to find the money to go and buy and change my car which I wouldn’t otherwise have done but I had to change for an automatic car.

I pay for a yearly prescription charge now so that’s cheaper but otherwise you, the other drugs that you get on your script from your GP, your Methotrexate and the other drugs, your painkillers, it’s all prescription charges otherwise I’veon bad days I would buy pre-prepared vegetables and things like that to help me which of course are always more expensive but when days were bad in the beginning, when I couldn’t peel, peel vegetables it was the only answer really. I pay for my supermarket shopping to be delivered to home because to go round the supermarket would just completely exhaust me. So there’s, there has, there’s been a lot of expense with it. It has been a lot of expense.

Cost implications, well I’ve had to pay a certain amount to have the stair lift and the toilet and the shower put in but biggest part of the cost was borne by the council. Where I used to catch a bus I’ve got to either to rely on my son when hes not in work, when hes in work the biggest part of the day ‘cos he works on the buildings, I’ve got to rely on taxis and things like that. So, well I used to walk anyway you know to where I usually went. I worked in the pit biggest part of my life, I’d never catch a bus or anything else, I’d walk there. But, well, nowadays down definitely to a, a private car or a taxi if I’ve got to go anywhere at all. Even to go down to my surgery, to have my Gold injections, it’s a taxi. ‘Cos I fell out the bus on three occasions actually and the last time was in front of a crowd of people and that was it, finished.

So was that recently?
No, I’ve been doing this thing now for quite a couple of years. I’ll, I’ll only go in a taxi. My, my daughter always comes with me to help me in and out of the taxi;

Well I do have a home help now on weekday mornings, through social services. For years nobody even told me I could get incapacity benefit. We were struggling so hard. Nobody had told me, not my GP, not the health professionals at the hospital, nurses, social workers, nobody, that I could get state benefits because I wasn’t able to work, I was so poorly. So I’d had the disease for about four or five years before I filled in the forms and started getting benefit. But it was a friend who was a health visitor who asked me one day, ‘Are you getting incapacity benefit?’ and no I wasn’t ‘cos I didn’t even know about it. And the help I have in the house now, that has been a real lifeline;

But as I’ve gotten older, it’s the most dehumanising thing. I don’t understand for the life of me why people would want to claim benefits if they don’t have to, because many’s the time I’ve had the doctor come here and they sit you down and they ask you the most embarrassing questions about whether you’re incontinent and all kinds of things and, you almost feel like you’re begging for money, which I absolutely loath I mean it would just be the greatest thing to tell them where they could stick their money to be quite honest [laughs]. I genuinely don’t understand why anybody would want to live off the state if they didn’t have to.

It’s so much easier to go out and get a job than have to plead to some doctor that you’ve never met, obviously it can’t be somebody that you know, somebody you’ve never met in your life and try and explain to him in the space of half an hour, or hour, all the difficulties of you life and why you deserve this, this benefit or that benefit.

And you know, you have to, it sounds awful, you sort of have to lay it on thick because you know, looking at you, it’s very difficult to see what you’re problems are. You have to talk about the extremes of, of your illness and your disability and that is, as I say, it’s obviously be examined and now, I mean as a grown woman, you get used to it simply because it’s happened so many times but when you’re a teenager to be poked about and told to lift this and take off your clothes to just your underwear, to a doctor, a male doctor in most cases, is mortifying.

And I would, I’d get very angry and ‘Why do they have to check up on me?’ ‘Why can’t they go check-up on the you know dole dodgers and people who, you know, are claiming housing benefit and claiming the dole when you know they ‘re cleaning windows and painting and decorating. I would get very, very angry and my mother would just say, ‘Oh you know, it’s got to be done. It’s a means to an end’, which is, is perfectly true but it’s not something I would do or want to do in a million years, if I had any other choice.

Yeah. They, well, they gave, first of all they gave me Disability Living Allowance which you get if you’ve obviously got a condition like this that’s ongoing. You can have two choices. If you apply and they grant you it, you can have, it depends how bad you are. You can have, obviously the money, they pay you each week. I have option two, which is the car. So what they do is the money that I have gets split into two, I get half of it and then the other half that I’m entitled to goes towards the car that I have, the mobility car.

And then, obviously I’ve had that since I was 16. Before it went to my mum who would have the car on my behalf. And she’d get Carers’ Allowance. And then when I was 16 they gave the forms to me and said, ‘You have to fill these in because you’re entitled to DLA. First of all, from 16 to 18 I was Income Support, but then they changed all the system and that so from 18 to basically now. I was entitled to Incapacity Benefit and it’s basically, you get forms every six months. It’s like a big thick booklet, asks you a million questions, you have to fill out everything. You get these little tiny boxes, you have to write as much detail as possible about your condition. Basically what they do is, it determines on how bad you are and if you can or can’t work. Obviously at the stage I am I can’t physically work so they give me the money instead of, you know, they gave me money for, you know on behalf of me going out to work. Which I get fortnightly. So it goes straight into my bank account. But, you know, you have to fill out the forms.

And then, now they’re doing this thing where you fill out the forms and you send them back and then shortly after they’ve received them they ring you up and they make an appointment for somebody to come out and analyse you, because obviously now with all the benefit fraud and stuff like that you have to be analysed. So someone comes out to give you like a short interview to make sure that everything you’ve written in the form’s, is true. Like if, you know, you’ve written down all the aids that you’ve got in the house, they check that you actually have them in the house that you’re not lying when you say you can’t walk or, it’s things like that. I mean, obviously, it’s a good thing because then you know that you’re, they’re giving you what you need. So, yeah, I’ve been on Incapacity for about several years.

And you don’t mind this person coming to your house?

No, because I know that’s what they have to do. Obviously I know that’s what they have to do to, you know, be fair to everybody. Because, you know, if they, if I didn’t necessarily need what they gave me and somebody else did, you know, it’s kind of like, you know, you have to be fair. So, no, I don’t mind that. I mean, I know it’s, you know, what they have to do in the system to, you know, make sure that everybody gets fair amounts and stuff. So, yeah, it’s fine.

I think I’m expecting one of those forms aren’t I? I think we’re all going to get anybody on long term disability is expected to get these letters from, you know, the Government took over aren’t they or a visit to, I had a few visits, they actually have had twice where they just came and knocked on me door actually.

Without?

Well they were without kind of any warning, no. Ah no, no, no. Really and I do a little voluntary job over in the Community Centre and it was this particular day I had gone to the job. I’m only sitting on Reception, I’m not in and working, I sit there. it’s just nice to be able to speak to different people and it gives you an opportunity to just put some nice clothes on and not be, you know, stuck in the house kind of thing and they’re very good to me. They know if I’m not well, I don’t go and so I hadn’t long got over and my husband rang me, he went, There’s somebody’s knocked for you from the Benefits people He said , you know, he said, Well she’ he said, She’s gone out for lunch cos he didn’t know what to say really, didn’t want to get me in trouble or them in trouble but they know I, the Benefits people know that I do this 2 hours a week, it’s not a problem and she said, Oh well I’ll let you off she said, I’ll be back tomorrow, tell her to be in So she said, she was alright, she said, it’s just a check-up to make sure you’re getting the right benefits but I don’t think so. For some reason they do check up on you and I’m the one that keeps getting recalled for medicals. I keep getting recalled to go about my Job Seekers Allowance which I don’t get Job Seekers Allowance so I don’t even argue. I think I just go. So, no, I’ve had a couple of visits, I think I’ve had two unexpected ones and I had a doctor who came out once to review me, well me claims and that and I’ve been about twice to the doctor, so they sent me to the job centre for my Job Seekers Allowance which I don’t claim Job Seekers Allowance but, you know, I don’t argue, I just go and that’s the end of that, so, you know, I’m expecting this big, I’ve heard there’s a big booklet on the way for all those people who, you know, are on any kind of disability allowance really.

So do you think they are going to assess you again?

Oh I think so yeah. I think everybody, so I’ve heard, on the TV. Isn’t that what they do to anybody who’s on long term, you know, benefit really. I think it has to be done, I’m not saying it doesn’t you know, there’s lots of false claims, I understand that and I think I’ll just have to wait and see what happens when they come really. You know, yeah it’s got to be done I suppose really. I am a bit nervous about it cos I do feel as if I’m a grabber maybe, I shouldn’t be getting them as I just don’t like anything like that. I definitely don’t think I’m going to appeal anyway. I don’t think I’d cope with it really, it’s just not a nice feeling and me friends had to do it, you know when they stopped, she was very similar to me and they stopped her things and she’s just a complete nervous wreck having to go to tribunals and it’s just dreadful.

I personally do feel that oh no, I can’t cope with all that if they don’t think I deserve it, well there’s not much we can do really, you know.

But how would you cope financially?

Well I’ll be v

I don’t know I just feel I’m not as disabled as a lot of people and I think if I’m thinking that then obviously they’re going to think that as well, I don’t know what it is. This I don’t know an awful lot about benefits anyway, I know theres mobility and things like that, but because I’d been turned down for it, I’ve never really re-applied for them.

And how long ago was it when you were turned down?

Quite a long time, but you see a lot of it, on the forms and things it’s how far can you walk, how many steps can you go up before you’ve got to stop and take a breath and all this sort of thing. Some days I can walk up and down the stairs fine, some days I can walk to the top of the street, other days I can’t and if they were to assess me, with my luck it would probably be on a day when I could do it. Which that particular day, when he came to see me it was, so he just turned me down for it.
The system is very awkward I think because they tend to go on what they see. I feel that if they were to see me on day when it was really bad, then I probably would get it but if they saw me today I probably wouldn’t. They go on what they see a lot of the time, well I feel this anyway, I don’t know, because other people that I know that have been turned down as well. But then, I’ve also seen people that are on that many benefits there coming out their ears and I think myself well how come you’ve got all those, you can do a lot more than I can, but maybe they just caught them on a good day.

Or maybe you’re seeing them on a good day [Yes, exactly] and they have other days that are bad?

I’ve just done, yes, yes. That’s it you see you don’t know. Looks are deceptive, but unfortunately it seems a lot goes on the looks, you can fill as many forms in as you like, but if they see you on the day and they think you can do a lot more than it actually says on this form, but if they’ve caught you on a good day, that’s you’ve got no chance that’s my feeling anyway.

Yes, Disability Living Allowance and Personal Care Allowance. I get the highest rate of disability and lowest rate of personal care. That’s the only ones I get.

And what made you sort of apply for those or..?
Well, I didn’t know about them for a long time, I didn’t know there was any such thing and then one of my friends, one of her friends actually came to stay with her and she just said to me one day, ‘Do you claim any benefits?’ and I said ‘No because I didn’t, no-one told me, no-one said anything about them. And she said ‘Ooh, just phone up DLA and they’ll send you them forms’ which frightened the life out me, twenty page booklet that you fill in and they ask you every question possible and was very shocked to realise that I could actually claim. Didn’t know, didn’t know anything about it because you’re not told anything like that you’re not told anything about that which I think is, is actually wrong.

Hmm, and so, was the process, once you’d filled forms in, was the process reasonably straightforward or did you have any ?

Yeah. It’s quite straightforward. It takes a long time. Takes a long time, bear with it if you do it because it’s worth it in the end but the timescale of them actually sorting out what your benefit is and when you get it and everything takes a long time but you get it in the end.

Benefits, definitely benefits, it is an absolute minefield and it’s I think it took me 10 years before I was even put on the right benefits and that’s horrendous and you feel so, again it’s the word isolated, until somebody who happens to be on it themselves sort of plucks up the courage, no I wouldn’t say courage but plucks up and says, ‘Well this is what, aren’t you on this?’ and ‘Aren’t you on”, it’s all word of mouth, the authorities, doctors don’t seem to put you in touch with social workers, OTs [occupational therapists] or whatever and I don’t think I had a particularly good experience, some people have had a wonderful experience with OTs and social workers and they’ve helped the necessary people out enormously and I don’t seem to have had that so I wouldn’t say it’s just my experience has not been particularly great but yeah.