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.
Jenna is a student studying for her GCSEs. She lives with her parents and younger sister. She is white British.
Financial support, do you receive anything?
Not for Jenna no, no we don’t get any help. The only help we do get with being on, since we’ve been on the drug trial, we used to get travelling expenses to go down to [Hospital] but I presume, they haven’t told me, but I presume now that we’re not on the drug trial even though she’s having the same drug, I can’t see that they’ll pay us to go so we’ll probably have to find that cost ourselves, which is quite substantial really when you add it all up. The petrol to get there, it’s a good three quarters of an hour each way if the traffic’s good and then you’ve got the car parking and then you’ve got the food while you’re there and the drinks while you’re there because you’re there for quite a while. We generally go to the café and have dinner so it, you know, there are quite considerable financial implications on it really.
Do you think that your lack of kind of financial support is because you’re not entitled to it?
Yes I think because my husband is a good wage earner, we’re not entitled to; possibly disability allowance she might be entitled to, I’ve never really gone into it. I’ve gone into for myself. I didn’t know about it until I went to the course I explained about earlier where I met other people with arthritis and one of the other girls who was a similar age to me, she told me about disability living allowance and said she could, qualified for it and suggested that I apply. So I then did go on the internet and looked it up about it and eventually I did get it an award for it so I do get some kind of help. But since I’ve had arthritis I’ve never worked full-time, I only work part-time and I did try going back to work full-time for a short period and it was quite hard actually because arthritis does make you quite tired and as I explained, the medication makes you unwell and I think it would be quite hard going back to being full time now. I’m quite happy to be part-time.
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' 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.
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.
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?
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.
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 denied…” 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.
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 is trying to set up his own web-design business. He is white British.
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.
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 is a full time PhD student in the dermatological sciences. She is white British.
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 is a full-time university student and volunteer for Arthritis Care. She is white Scottish.
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.
Age at interview:
Age at diagnosis:
Cat is a full-time medical student. She is white British.
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
…and 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.
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.
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.
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.
Last reviewed November 2018.
Last updated November 2018.
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