Arthritis (young people)
Money and financial support
Living with a long term condition like arthritis can cost a lot. People may need money for things like transport to and from the hospital, medications, or home adaptations (such as adapted baths, walk-in showers, wheelchairs, stair lifts and ramps – see ‘Getting around, home adaptations and daily living’).
Sometimes spending time in hospital can mean taking time off work which may result in a loss of wages.
People may also struggle to work full-time and have to settle for part-time hours. These costs can affect the young person’s whole family if they are living at home.
As young people with arthritis grow up, they too have to live with these costs. It can be hard for young people to live independently if they are not able to earn enough to support themselves; some of the young adults we talked to were still living with their parents who supported them financially.
Several people said that they couldn't afford to live independently while on benefits. Ruth described it as 'dehumanising' having to depend on state benefits. It makes her angry that she is always being checked up on to see if she qualifies, and having to explain that she may not look disabled but still needs support.
In this section we talk about the sources of financial support that young people and their families received.
Information about financial support
There are several different sources of financial support available to families and young people, but people we talked to often thought it was a complicated system and found it difficult to know what they were entitled to. The lack of clear, coordinated information could be very frustrating.
People discovered what was available and how to claim it through various channels, including other people with arthritis and their parents.
Charlotte Z’s parents talked about spotting people with Blue Badges in a car park and asking them how to claim one. Having the confidence to ask others about financial support and being “proactive” about it was something that young people and parents recommended.
Robert and Karen were proactive in finding out about the financial support their daughter, Charlotte Z, was entitled to.
Robert and Karen were proactive in finding out about the financial support their daughter, Charlotte Z, was entitled to.
Health and social care professionals like doctors, nurses and occupational therapists were also said to be good sources of information.
Debbie got good advice from a GP, while Ruth got help filling out benefit forms from a social worker who was himself disabled. Karen and Robert recommended contacting the Citizen’s Advice Bureau.
Students at college or university could contact their disability support services about accessing funds which could be used to buy equipment such as laptops, specialist transcription software or special chairs (see ‘School, College and University’).
Sources of financial support
The type of financial support available to young people with arthritis will vary from person to person and depend on where they live in the UK.
In this section we talk about the support that young people and parents applied for. If you want to read more about the types of support discussed here you can click on the links at the bottom of this page.
Young people get free prescriptions up to the age of 18 if they are in full-time education. If people have to pay for prescriptions then buying a Prescription Prepayment Certificate (PPC) for a year is a way to reduce the cost.
Allowances and benefits
At the time of these interviews some people we talked with were receiving Disability Living Allowance DLA, a tax-free benefit for disabled people to help with the costs associated with having a disability. DLA for over 16s is now replaced by the Personal Independence Payment (PIP), but Disability Living Allowance can still be claimed for a child under 16. This is called DLA for children. What people get depends on how their disability affects them.
Carer’s Allowance is also available for people looking after someone with substantial care needs. Sometimes people applying for DLA or PIP need to have a medical assessment to determine how much money they are entitled to. At the time these interviews were collected nobody talked about Personal Independence Payments.
Chantelle receives DLA and Attendance Allowance. Somebody at her local hospital helped fill in the forms and explained how much help Chantelle needed.
Chantelle receives DLA and Attendance Allowance. Somebody at her local hospital helped fill in the forms and explained how much help Chantelle needed.
The Motability Scheme is a private scheme that enables disabled people to exchange part of their DLA to obtain a new car, powered wheelchair or scooter. For this to happen people have to be on the Higher Rate Mobility Component of the DLA or the enhanced rate of the mobility component of the Personal Independence Payment (PIP).
Dan got a new car through this scheme.
Dan's life transformed when he got a car through the Motability scheme. He spent more time out of the house and met new people.Dan's life transformed when he got a car through the Motability scheme. He spent more time out of the house and met new people.
Dan's life transformed when he got a car through the Motability scheme. He spent more time out of the house and met new people.Dan's life transformed when he got a car through the Motability scheme. He spent more time out of the house and met new people.
People with mobility difficulties can also apply for Blue Badges which lets them park close to where they need to go. They can use disabled parking bays and park on single and double yellow lines if it’s safe.
Some of the people we spoke to used Blue Badges. Others didn’t apply for one, either because they didn’t need one or because they didn’t believe that they would be awarded one.
Ryan would have liked his mum to get one but she didn’t think it was necessary. Emma has never applied for a blue badge or other benefits and thinks it’s important only to get what you really need.
Emma doesn't feel she needs a blue badge because her arthritis affects her elbows more than her legs. She can struggle carrying shopping so tends to buy just what she needs or asks a friend to help.
Emma doesn't feel she needs a blue badge because her arthritis affects her elbows more than her legs. She can struggle carrying shopping so tends to buy just what she needs or asks a friend to help.
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.
Occasionally people with Blue Badges said that the public didn’t always understand why they were using disabled parking bays if they were not in a wheelchair.
Local councils can sometimes provide parking bays in front of disabled people’s houses if they have no driveway. This lets people park on the road near their house.
Students in higher education in England can apply for Disabled Students’ Allowances (DSAs). DSAs don’t have to be paid back and are given on top of student finances (such as student loans and bursaries). Money is paid to the university and is used to by essential equipment and services to help people with their studies.
Some of the people we spoke to received laptops, digital recorders, transcription software and chairs offering back support. Universities may provide additional financial support for disabled people on top of DSAs, for example to pay for transcribers and transport (see ‘School, college and university’).
Deni received a lot of help from her university including a light-weight laptop, a Dictaphone, library assistance, extra time in exams, and taxi expenses if she was struggling to walk.
Deni received a lot of help from her university including a light-weight laptop, a Dictaphone, library assistance, extra time in exams, and taxi expenses if she was struggling to walk.
Cat received DSA which helped pay for a supportive chair. She would have liked money to mend her car because she had problems walking to her university placement.
Cat received DSA which helped pay for a supportive chair. She would have liked money to mend her car because she had problems walking to her university placement.
Some of the people we spoke to received other types of financial support. For example, Charlotte Z. had a Disabled Person’s Rail Card which gave her and a companion discounted train tickets. She also had a Cinema Exhibitors' Association Card which allowed a carer to go to the cinema for free.
When Jenna was on a clinical trial for a new drug the hospital paid for her travel expenses to and from the hospital. Tina was also able to claim back her hospital travel expenses in Northern Ireland.
Some of the people we spoke to received support from local authorities (local councils). For example, Ryan borrowed a bathboard and wheelchair, whilst Jessica had wheelchair ramp fitted to her front door. Dan was given an electric wheelchair from his local scouts group.
Mary's local authorities paid for a wheelchair ramp so her daughter, Jessica, could get in and out their house. Jessica also needed a chairlift but her parents had to pay for it themselves.
Mary's local authorities paid for a wheelchair ramp so her daughter, Jessica, could get in and out their house. Jessica also needed a chairlift but her parents had to pay for it themselves.
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.
Local authorities can assess people to see if they are eligible to receive 'personal care services'. If they are eligible, the individual can choose to have the money for equipment and personal care paid directly to them from social services (using direct payment), or they may be able to ask social services to find and buy the equipment on their behalf (known as 'commissioned services' or 'direct services').
People who didn’t receive financial support
Not everybody we spoke to received financial support. Sometimes this was through choice.
Mary felt it wasn’t worth applying because it was too much hassle for too little money. Elly stopped claiming DLA because her symptoms had improved so she didn’t feel she needed it anymore. Some people gave up their Blue Badges when their mobility improved.
People sometimes asked for financial help but didn’t receive any (or not as much as they would have liked). When this happened they were sometimes frustrated or embarrassed and wondered why other people were entitled to support when they weren’t.
Not being eligible for home adaptations such as stairlifts or bath equipment was a particular source of frustration and confusion. If they could afford it they would buy needed equipment using a credit card, but not everyone could do so. People were concerned both about lack of financial support for disabled people and lack of clear, consistent rules and advice.
Marie and an occupational therapist went to a showroom to find an accessible bath for her son, Ryan. Marie thought that the bath was being provided for free and was embarrassed when she was asked to pay for it.
Marie and an occupational therapist went to a showroom to find an accessible bath for her son, Ryan. Marie thought that the bath was being provided for free and was embarrassed when she was asked to pay for it.
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.
Finding out about financial support
For more information on the types of support people talked about, visit our Resources section.
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