People with chronic illness may experience financial hardship. Some people we talked to had given up work or reduced their working hours because of illness and so earned less. Some received a pension because they had retired due to ill health (see 'Work'). Chronic illness can have various cost implications. Many people talked about the cost of medication and those regularly taking several types of drug had found it more economical to buy a pre-payment voucher. Some people had purchased special equipment for around the house e.g. bath lifts, riser chairs, handrails and sometimes had to replace things they already had e.g. a higher bed or sofa, a walk in shower or had bought a microwave oven to make things easier. People had to be paid for ironing, cleaning and gardening which were additional expenses. Living alone could add to costs e.g. a few women had to pay for a hairdresser to visit to wash their hair.
Transport costs invariably increased. Automatic cars with power steering, taxi fares and air travel rather than train travel were all mentioned. Shopping for food at local shops rather than supermarkets, having groceries delivered and buying specific clothes and shoes added expense. One woman summarises the additional costs she experienced. Social outings to theatres cost more as the expensive seats are downstairs and people with a disability are often charged a higher premium on holiday insurance. (See 'Personal life and changes to the home', 'Mobility, driving and transport issues'.) Extra money was also spent on complementary treatments and food supplements (see 'Diet and food supplements' and 'Complementary and alternative approaches').
Describes many things that cost more because she has arthritis.
Describes many things that cost more because she has arthritis.
Age at interview: 49
Sex: Female
Age at diagnosis: 36
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Clothes, yes, you're restricted on what clothes you can buy because you can only really buy st, I can only really buy stuff that I can fasten from the front. And shoes are expensive. Although I've now found a shoe shop one of these I don't know what they are, anyway, but it's a great big shoe shop and you can get training shoes for 25 quid, which should be 50. I mean, that's, you know, 'cos I, usually it's '50 or more a go to get training shoes. I mean these were 50 quid. I mean, again I can afford that but, but for people who are not working or whatever, or low paid jobs, it is a big thing. And you can end up buying shoes that aren't any good to you. So then you, you know, you've wasted the money and all that kind of stuff.
So all those things do add up really. And if you had, if you had a family you might, you might have to, to pay for help, like I do have help and, I mean, you do have to pay for, for more.
Yeah, I think that's it really. I can't think of anything else that might cost more. Well, yeah, it's equipment like this, you know, you, you can't just get the standard computer. If you want the voice activated that costs money. The, the ones that come with the computer packages are not all that wonderful. You really need a, for me I'd rea, I really, you know, the, the proper one. You know, that, a sophisticated one rather than a basic one.
Yeah, and if you can't use public transport and you cant' drive a car then your only option is to use taxis which can run very expensive. Although in a city like [city] it's probably cheaper than driving a car, or could be 'cos you don't have to buy the car and pay for the tax and pay for insurance etc etc. And, but I keep a car on anyway because it's easy for shopping and stuff. So that's probably it. Isn't it?
Yeah, it's just generally day to day life costs more. And if you want any fancy handles on your spoons or whatever you know anything like that costs an absolute fortune for what they are, you know, anything, it's, you know, really. The other thing, these lap tray thingies I got from a market stall, they're quite cheap but you know, if you need, if I need any, any other equipment you start to have to pay for, if you have to pay for it yourself, it all starts adding up.
Sandra says that she has had lots of extra expenses following her diagnosis of RA.
Sandra says that she has had lots of extra expenses following her diagnosis of RA.
Age at interview: 51
Sex: Female
Age at diagnosis: 51
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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’ve… on 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.
Help from Social Services
Sometimes social services can help. People can contact social services and request a Health and Social Care Assessment. A social worker then visits and decides what equipment or services are needed and works out a 'Care Plan' - a written statement of a person's needs. Some people are given cash payments in lieu of social care services. These 'Direct Payments' are made to people who have been assessed by social services as needing assistance. One woman explained how the Direct Payments scheme helps people to make their own decisions about how care is delivered. Another young woman said that she had had to pay for most things herself but that social services had paid for a bath lift, a special chair that lowered her into the bath. Financial help may come from other sources too. An elderly man said that the local council had borne most of the cost of adapting his house.
Explains how the social services Direct Payments scheme works, which gives people control over...
Explains how the social services Direct Payments scheme works, which gives people control over...
Age at interview: 40
Sex: Female
Age at diagnosis: 2
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I have now gone onto the direct payment scheme, which is a new scheme where they provide you, Social Services provide you with a carer or a personal assistant as you call them, they're not really carers, and I have somebody in that comes in and helps me with my housework, helps me dress if I need assistance and since that moment I have been a lot better because I am doing less around the home, I was struggling to hoover, do things, and now I've got this person in I don't have to do anything and I have been a lot better, and I think mentally as well because I am not worrying, gosh how am I going to cope with this, how am I going to do that. So I think sometimes stress can bring on, I think for me stress brings on a flare up. So since I've had someone from the direct payment scheme my life has improved and I feel better.
'. after my joints deteriorated and then I went to work for a local disability place and it was them that told me about this Direct Payment Scheme and when I spoke to quite a few people with disabilities, no-one's heard of it, its not very widely, in fact you can ring Social Services up and some of their advisors say what's that, and I say well you actually run the service. So it is, but it is out there they will assist, if you need the assistance.
Do they call it Direct Payment '
Yes Direct Payment scheme.
'because you're sort of choosing when to have things?
What they do is Social, you're, you're given Social Services come out and assess you and you decide on the level of care that you feel you need and then they say we will allocate you twenty two hours a week or whatever and with that you can decide, you employ your PA, they give you some money each month for you to find the PA, it covers advertising costs, or they themselves can give you a carer, but that's from an agency that really you don't know who is coming in from day to day, so older people perhaps would prefer, they don't want the hassle of trying to advertise for someone, but for me, being a younger person I wanted to be able to know who I was getting each day and get to know the person, because often they are doing quite intimate things, that you want to know them really. So I chose to do that option.
And did you find it difficult to recruit somebody?
At the time, I've been on it three years now and I didn't. I found people to recruit, but I would like to re-advertise and find another PA and I have now found it difficult to recruit.
Social services paid for a chair to lower her into the bath but wouldn't pay for other items.
Social services paid for a chair to lower her into the bath but wouldn't pay for other items.
Age at interview: 29
Sex: Female
Age at diagnosis: 25
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I mean, it's your prescriptions is one thing which I do buy pre-payment certificate but, you know, I did speak to my doctor whether you can get them free but you can't, not with RA, which he found to be unfair. But it's, probably a month I have to get 6 different prescriptions which does work out quite a lot of money. Which I'm not bothered about doing it, but it's just something you wish you didn't have to do. And I've had to buy a lot of things to adapt the house with, you know, to help me around the house and stuff like that. And I had, my old car was perfectly fine but I had to get a new one 'cos I needed something easier on the steering wheel. It's just silly little things that you don't realise.
You said that you've got a few things round the house. [Yeah]. What sort of things have got, bought?
My mum bought me a wheelchair, that's how bad it had got with me that I, when I couldn't walk. I've got a walking stick, I've got a lot of things to help you open jars, bottles, and like specially adapted forks and knives like if you're hands are swollen they're thicker so you haven't got to bend so far. I had a bath seat and a bath bench but recently social services have actually put in a, a chair that lowers you down now. Another thing we've found, we've got to get a shower put in 'because I find washing my hair, you know, is difficult because of leaning over the bath. Now showers, I prefer baths but I feel we've got to have a shower now 'cos of that, it's just loads of little things that you, you've got to buy.
Do you think you'll get any help putting the shower in?
No, I've been told that, me and my partner we earn too much so, no. 'Cos that's one of the things I did have a social worker come round and she tried to help me with a lot of things but I had the letter back last week saying that I wasn't entitled to anything.
And you mentioned that they, they put a bath lift [Yeah] in for you. [Yeah]. Did you have to pay for that?
No, no. No, which I think that's very good as well. It's, it has helped a lot.
So they'll put that in to help you get in and out of the bath [Yeah] but they wouldn't give you the money to convert to a shower.
No, No. But it's something we will get done now anyway, now that I know I can't have it that way, then we'll just have that done anyway.
The council paid most of the cost of adapting his house.
The council paid most of the cost of adapting his house.
Age at interview: 65
Sex: Male
Age at diagnosis: 54
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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 he's not in work, when he's 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.
Government benefits
Many people with chronic illness are entitled to one or more government benefits. Statutory sick pay is usually paid during the first 28 weeks of sickness (not for the first three days) to people who earn more than the minimum - for current rates see GOV UK. Other benefits can be paid after Statuary Sick pay has stopped. A woman we interviewed found one such benefit invaluable and wished she had known about it sooner.
She finds Incapacity Benefit invaluable and wishes she had known about it earlier.
She finds Incapacity Benefit invaluable and wishes she had known about it earlier.
Age at interview: 53
Sex: Female
Age at diagnosis: 30
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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.
In order for a person to qualify for certain goverment benefits a Work Capability Assessment and questionnaire may need to be carried out. For more information on government benefits see GOV.UK website.
We talked to people who had claimed a number of different government benefits and some of the names and types of benefits available have changed since these interviews. Several people objected to certain aspects of this process. One young woman found doctor's examinations 'most dehumanising' while another thought that the qualifying process was fair and that the assessment ensures that everyone gets what they are entitled to.
To obtain benefits she needed a doctor's examination but found it 'dehumanising'.
To obtain benefits she needed a doctor's examination but found it 'dehumanising'.
Age at interview: 28
Sex: Female
Age at diagnosis: 5
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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.
Melissa talks about the application and assessment process for Incapacity Benefit and thinks that...
Melissa talks about the application and assessment process for Incapacity Benefit and thinks that...
Age at interview: 22
Sex: Female
Age at diagnosis: 5
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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.
Pat is receiving Incapacity Benefit and expects to be assessed again soon. She has been assessed...
Pat is receiving Incapacity Benefit and expects to be assessed again soon. She has been assessed...
Age at interview: 54
Sex: Female
Age at diagnosis: 25
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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’s…,” 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
Some people were reluctant to apply or delayed applying for benefits because they didn't feel they were that disabled or they thought they would get better or were used to earning their own money. Some people said that they had not been awarded benefits because they had been assessed on a good day and not on a day when symptoms were bad.
She does not receive benefits because she was assessed by a doctor on one of her better days.
She does not receive benefits because she was assessed by a doctor on one of her better days.
Age at interview: 45
Sex: Female
Age at diagnosis: 17
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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 there's 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.
Those living alone who find it difficult to do domestic tasks, gardening or look after themselves because of pain or fatigue, may also qualify for benefits.
People who have difficulty walking can apply for a disabled badge for parking (Blue Badge Scheme) which is not means-tested ie. does not depend on existing income.
Motability Scheme
An independent organisation, Motability helps people gain access to a car or scooter. For details about eligibility please see their website. One woman said the limited mileage allowed per year in this scheme was a disadvantage because she needed to use her car a lot and so exceeded the limit and had to pay extra.
Explains why she decided to get a car through the charity Motability.
Explains why she decided to get a car through the charity Motability.
Age at interview: 40
Sex: Female
Age at diagnosis: 2
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But I didn't use Motability for a long time, I, I bought the car in my own right and paid for it out of my mobility allowance, it wasn't until I got older that I decided that Motability seemed better for me, and I went down that avenue of doing that. And I've, I think I've had three cars now on Motability, which I have found no problem, but it doesn't suit everybody. And also you've actually got to get DLA for three years as well in order to get a Motability car. So if you are one of those people with arthritis that only gets a two year award of DLA, you can't have a car with Motability.
But you get some money that you can use towards transport, [Yeh but only for the 2] but not a Motability car?
Yeah, but I know that's a pitfall for some people with arthritis, they get a couple of year award and can't get a Motability car because it's a three year award.
And why did you change, what benefit was it for you?
I decided that the problem I was having was that if the car broke down, I had Uncle that was a mechanic who stopped doing mechanical work, so it was taking the car to the garage it was costing me, the car was old that I had, five or six years old, my first car and I decided that Motability seemed better because they repair it immediately, they come and collect it, thy pay the insurance, it's worry free driving and that's what I wanted. And I didn't want my car off the road for days on end because you know without the car I don't go out unless its taxis which of course are expensive.
More advice and information
People had mixed experiences but many felt that health professionals did not give them enough information on financial benefits. People may be unaware that they can claim benefits. One woman said that she only learnt from other patients in hospital that she was eligible for certain benefits. Another said that it took years to sort out her benefits and that she only heard about them from other people with arthritis. (For more help see our 'Resources' section, GOV.UK and Citizen's Advice Bureau).
She wasn't told for a long time that she could claim benefits. She had to fill in a 20 page booklet.
She wasn't told for a long time that she could claim benefits. She had to fill in a 20 page booklet.
Age at interview: 37
Sex: Female
Age at diagnosis: 27
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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.
It took years for her to obtain the right benefits and she thinks she should have had more advice.
It took years for her to obtain the right benefits and she thinks she should have had more advice.
Age at interview: 38
Sex: Female
Age at diagnosis: 21
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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.
Last reviewed August 2016.
Last updated August 2016.
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