Learning about arthritis and treatment

People who are newly diagnosed with arthritis often want to learn about and understand their condition and how it will affect them in the long term. They may have questions about treatment or the impact arthritis can have on day-day living. Sometimes people want to know where to go for emotional support or how to tell family or friends that they have arthritis. There are lots of things that people feel they need to know and there are many places where they can go to find answers.

Doctors, nurses and other health professionals

Some of the young people we spoke to said that they relied on what doctors and nurses have told them about arthritis and the different treatments. They said that they could trust their healthcare team more than anyone else because they were the experts with the specialist training. Some described how they could phone, text or email their healthcare team whenever they liked. Usually a nurse would reply but the nurse would speak to the doctor if needed.
The people we talked to often stressed the importance of being confident around healthcare teams and asking lots of questions. Some said they went to the doctor and suggested possible new treatments that they had learned about from friends or on the internet.

Kerrie trusted her healthcare team and could talk to them about anything and not feel embarrassed.

Age at interview 25

Gender Female

Age at diagnosis 22

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For me it’s the fact that they’re, I am confident that I can comfortably talk to them about any concerns that I’m having no matter how embarrassed I might be feeling about it or something like that. So I mean it’s not necessarily they’ve put me in touch with a counsellor as such, it’s just having the confidence in those people as individuals, that they know what they’re talking about, that they will always try and help me try and find the right information if they don’t know themselves and that fact that, you know, they all work together. I think it’s very clear that the team of people that I see now is, in fact, a team, you know. They communicate with each other, whereas I never had that before in the in the group of people that I was seeing at a previous hospital. It was, you know, so different to the kind of experience I had there and now I think I just feel so much more relaxed that my care is in the hands of people that do exactly that. They care. I’m not just another number, you know. Everything is considered and I’m always offered above and beyond the support that I need, just in case I might ever need it, you know. Things like counselling are always suggested to me and even though I might not necessarily need it right now, I’m comfortable because I know that support is there if I need it.

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Lu always has a list of questions to ask when she sees her consultant. She also tries to take…

Age at interview 26

Gender Female

Age at diagnosis 13

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Did you or your parents feel confident in asking questions during the consultations?

Yeah. I felt confident. I’d always have a list of questions, and we’d make it a bit of a joke, you know it would be like, Oh the [name] family with the list of questions But I think it’s important to ask the questions, and I always, even now try and take someone with me because I feel like I’ll come out and just forget the questions, or you sort of digress from you know the point or something like that, so I always go in with a list of questions. I think that’s really something that I would definitely recommend. Knowing what you want to get out of your appointment, and you know sort of quizzing the consultant as much as possible, asking what sort of the other options are, that’s something I always do as well. But that’s something that’s taken you know what 13 years now to sort of do, I didn’t feel confident doing that at the beginning at all. The same sort of you know with recently that I’ll happily go in and ask them, you know, Can I do this or Can I do that Or If I move abroad you know what are the options for medication or treatment abroad Stuff like that.

So as an experienced patient the one thing that you would recommend people doing, well just from diagnosis is take in questions?

Yeah.

So to have that strategy to begin with?

Ask as many questions so that you understand what you’re going to be going through. And also take in a list of questions, and take someone in for support. Because if you don’t ask the question they can always ask the question for you. And you’ve, you also, you come out of the consulting room and you’re thinking, How often am I supposed to be having a blood test or What did they say? I should be increasing my medication to So always write everything down and then if you’ve got someone with you as well you’ve got that person to be like, They said this? Or they said that So I definitely recommend that.

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When people try to learn about the medical side of arthritis it helps if doctors explain what the scientific words mean. Some said that they did not know what ‘juvenile’ meant for a long time and said it would have been useful to know earlier (juvenile means young people).
Some of the people we spoke to were happy with how doctors explained things. Others found the doctors difficult to understand and some relied on nurses to explain what was said. Some people felt that they did not have enough time with their doctors. Zoe said that she sometimes gets confused when doctors “go all science on her”.
People with medical or scientific knowledge or training understood the terms being used. Some wanted as much information as possible. Emma said she “asked for every information sheet under the sun”. People also emphasised how important it was for health professionals to tailor the information to the individual needs of each person.
To help people learn about arthritis healthcare teams sometimes give out leaflets or information packs to read, DVDs to watch, websites to visit or helplines to call. Sometimes people go to a “breakaway camp”. These camps are sometimes organised by doctors and nurses but charities also organise them. They usually last between a weekend and a week and involve outdoor activities as well as talks about arthritis.

Lucy went to a breakaway camp with her rheumatologist and thought it was funny watching her…

Age at interview 10

Gender Female

Age at diagnosis 7

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So you go to camp. What is this camp can you describe what it is?

It’s just a camp where the doctors and nurses go and other people.

And it’s a camp so does that mean you stay in a tent?

No I don’t, we stay in a hostel.

How long do you go for?

We went for two nights.

And what do you do?

We do like activities like rock climbing and then abseiling, canoeing and bouldering and stuff like that.

Can you do all those activities?

Yeah

Doesn’t ache, doesn’t hurt?

No

How often do you do this?

There’s a, it’s my first year at camp and we do an activity each day or maybe two.

What do the doctors and nurses do?

They do the same activities.

Did they ever teach you anything?

No not really.

They never talk about arthritis or anything like that?

No

Are there other young people there?

Yup

What are they like?

Same

What do you mean the same?

They’re the same as me

And what does that mean? Does that mean they’ve got arthritis?

Yup

All of them?

Yeah

Do some of them have different kind of illnesses or problems?

No they have just arthritis.

How many boys and girls are there?

There were eleven at the camp.

OK and how many doctors and nurses?

It was five or something.

About five yeah OK. So you all stay in a hostel, do you stay overnight?

Yeah

What’s that like?

It’s OK

Is it fun?

Yeah

What makes it fun?

You make friends.

Oh wow. So you’ve come in making friends with people with arthritis? What are they like, arthritis like?

The same as mine.

So I mean I was wondering whether or not you had people in wheelchairs or whether or not you had people that

No they’re all like walking and all.

Have you learnt anything from them?

No not really

Can you stay in touch afterwards with them?

Yeah if you go to the other camps at all and meetings.

OK do you think you will?

Yeah

What was it like seeing your doctor outside the hospita

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Deni gets very nervous around doctors in hospital and would like to speak to her doctors outside…

Age at interview 26

Gender Female

Age at diagnosis 2

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it’s lit a little fire in me just hearing that so, you know, like to go away for a weekend with a rheumatologist to have that that resource there, just to be able to ask a question without it being as formal as being in a hospital, maybe that would, especially for me. Being inside a hospital freaks me out and I think that’s because of being in a hospital when I was so young and not understanding what was going on. it’s really, became something quite bad for me to have to deal with. So I think from a younger age, to have that rheumatologist just speaking to you like you’re a normal person and giving out information would have helped me I think. Out of the hospital environment, I think that’s a very clever idea.

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People we spoke to often felt unhappy with the amount and type of information they had been given. Some said that there was too much information. Others said that they received no information at all.
Ryan said the language was sometimes too difficult to read. A common complaint was that the information was not written for young people. Tom said he was given a booklet that was “frightening” to read. It was designed for older patients who needed surgery, had heart problems or were using catheters (a tube to help with peeing).
Another problem was that the leaflets were not designed for specific types of arthritis, so people with systemic JIA or ankylosing spondylitis had to seek out information in different places.
Some found the information boring.

Kyrun was given a story book about arthritis when he was first diagnosed. It did not talk about…

Age at interview 16

Gender Male

Age at diagnosis 6

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Did you know anything about arthritis when you were diagnosed?

No. They said, Yeah, you’ve got this, and I remember one of the nurses like finding like an A4 booklet of like explaining like, I think it was a story of a, I think it was, My name’s Sam and I’ve got arthritis. I’ve still got the book today, I remember like a nurse bringing that and that explained a little bit, but it was just arthritis, so there were bit’s like well why do my lungs hurt? Why the, or why have I got a rash? Why have I got swelling? Cos that book didn’t, it was just like arthritis in general, as in just yeah arthritis and that was, it said, oh I think I was worried about my whole body aches and when someone’s got arthritis it’s just one particular joint. And then it could be like when that joint’s died down and got better it could be another joint. But I had like the pain all over. So that was like one of the main like things that was like why haven’t, why has it said that or why have I got that?

Was it a story book?

Yeah it was, it was based on a true story but had to be like oh just Sam and that was it. It didn’t have like any other names or anything else in it. So it was like there was, it was like very basic as well, didn’t really have any like feelings or anything that a young person would say in it. So it was a bit, yeah well not, looking at it now so I could have made this a lot, so much better, so

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It was often parents who processed and helped people understand the information, especially if the son or daughter with arthritis was very young. Marie read the information and then told her son, Ryan, what she thought he needed to know. Marie did not want Ryan reading about the possible side effects of medication and getting worried. Some people said they only relied on their parents for information and did not want to search for themselves.

Charities

Some of the people we talked to were members of an arthritis charity, such as Arthritis Care or the Children’s Chronic Arthritis Association (CCAA). Sometimes charities cater for specific types of arthritis, such as the National Ankylosing Spondylitis Society (NASS). Arthritis Research UK also provides information for young people with arthritis and for health professionals. These charities often have websites with information on or a helpline people can ring if they want further information (see Resources). Some of the people we spoke to had used these helplines to find out about various things, such as disability living allowances (DLA) and information about treatment. Some charities send out information in the post or have magazines people can subscribe to. Some also organise camps and activities for people with arthritis and their families.

Jazmin volunteered for CCAA. She learned lots by listening to talks by healthcare professionals…

Age at interview 20

Gender Female

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What about the role of CCAA (Childrens Chronic Arthritis Association) then? What do they do or what have they done for you?

I think we first came into contact with them as we went as a family originally like we were invited originally in early teenage years and obviously, I don’t know, I like, we really gained a lot from it and it sort of just like, just more the science behind it, we got from CCAA and obviously then we got different perspectives from different other families and different kids and you know different, then we got like, loads of different health professionals came like – podiatrists and dieticians and obviously physiotherapists and rheumatologists, like all these different, different health professionals that came for this one common factor really to this weekend and to obviously we like we got involved actually passing on our knowledge to other families and children and we just, we like, it would be so passionate about it we like, we learn as much as we can and then we want to pass it on to others and I love it. I love it like this year like in the past few years I was the photographer of the charity but now I’m like want to pass that role on to someone else to like actually my friend who has arthritis as well actually who’s Mum is a physiotherapist which is mind-blowing who used to actually be my physiotherapist which, so it’s like, yeah it’s just, and just like I want to actually get involved in teaching, educating the kids now. I actually want to do that, think about going into education myself so it would be like a great experience for me and like I’ve been in like the parents sessions and it’s always interesting. Like obviously I get the perspective from, I know what the kids would be like, feeling like but being in the parent’s sessions I like to see what the problems they face if that makes sense? So it’s like parents and kids, they obviously have different views on this disease and being involved in CCAA I get to see both and I get to know part of some knowledge from both sides really I would say and everything and it’s like, it, it’s a great charity, I love it to bits.

Good stuff, great stuff. So you’ve, you’ve kind of got friends with arthritis then?

Yes and I’ve met through CCAA and I love them all, I really do because they’re like, they’re just normal kids like me. Well they’re not kids anymore, most of my friends arearound my age or a little bit younger and you know be like, we’re just like normal young adults, you know, getting up to mischief and everything and because, I don’t know, I don’t how, like I see it as if the families, parents are positive about having this disease then the kids grow up positive about it because like all my friends, we’re all positive about the fact, we don’t, we see it as in, it’s just part of us, just deal with it sort of thing. We don’t, shouldn’t just complain about it and just like think it’s the end of the world because it’s not; there’s worse diseases out there. So like, we’re like just lives our lives normal as we can, well we do, live our lives normally, we just have this, well actually a little problem to deal with really, that’s how we see it and yeah we all, we all get on great and yeah we’re just all brought together by having arthritis I would say really and yeah.

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The internet

When it comes to using the internet people had mixed feelings. Some thought that the internet was a great help and did a lot of online research. They used the internet to find out about symptoms, medications and surgery. Sheri and Charlotte X used the internet to find out information about their consultants. The internet was also used for emotional support. By reading or writing blogs, chatting in forums or using Facebook and Twitter, people could get things off their chest and learn how others cope emotionally. They also enjoyed helping others learn about the condition.

David uses NASS to find information about his type of arthritis and meet people using the NASS…

Age at interview 21

Gender Male

Age at diagnosis 21

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Yeah, I am aware predominantly of NASS and, National Ankylosing Spondylitis Society and that’s a UK based support group. That’s why I focus a lot of my attention with them because it’s much more closer to home and I can relate to it more but there are there are a lot of strong groups in America. There’s, I think it’s called the Kick AS Society in America, which is directly involved with ankylosing spondylitis but there’s a, I think it’s called the Spondylitis Society of America, which deals with the broader spectrum. So that being the all, I think it’s called, All Types of Spondyloarthropathy, which is quite a long word, but it involves, it takes into account AS, psoriatic arthritis and other types of, so it’s quite general in that respect. So they can offer quite a lot of general advice but in terms of AS, my mainstay would be NASS in the UK because they do a lot to bring the awareness of AS, not just to the public, but to government because there’s a lot of problems with the diagnosis like time from the onset, which is about eight to ten years I think. And the funding for the TNF, which is which is potentially depriving a lot of people from medication that could change their life and halt progression, you know, entirely. And also, it’s the best thing you can get to meeting people with AS because they have forums, which you can talk to other people and they can share experiences such what they do to cope with their pain, how they find different medications, how to deal with the side-effects. More general things, talking about maybe family life, working life, so it’s very it’s very good for support and the people that organise NASS also they’re easily contactable. it’s not as if, you know, they’re in a corporation high above and they’re uncontactable. You can send them an e-mail and they’ll reply to you and it’s very open and transparent. it’s very nice.

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Some people struggled to find relevant information on the internet. Others did not feel that they could trust what was written. This happened when the information was not written by medical experts, or because the information appeared inconsistent. Some said they went to the internet for help and came away even more worried.
Rob said that the websites were full of “doom” and negative stories. Kerrie found “all sorts of scary stories” when she first started browsing the internet for information.
Not everyone wanted to share personal information on the internet forums. Learning how to filter the information found on the internet was a key skill that developed over time.

When Kerrie first started using the internet to find information she found it difficult, but as…

Age at interview 25

Gender Female

Age at diagnosis 22

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Could you tell me a bit more about where you’ve been and what you’ve found?

To be honest, it’s quite difficult to remember where is actually what I found. I remember initially, just literally searching the topic on the search engines online and all sorts of scary stories were coming up. You know, lots of different health websites, community forums, charities, all that kind of thing, you know. All relatively helpful but also, at the same time, quite contradicting like one thing necessarily say the same as another, so it was very hard to distinguish what was right and what was wrong. And I couldn’t really find much about people’s personal experiences as such and that’s really what I wanted to know. I almost wanted to find someone who was exactly the same situation as me, what happened to them, did they get better, but it was kind of like searching for a needle in a haystack I suppose. I didn’t really know what I was looking for, how to go about it. So I was coming up with all the wrong information that that really just frightened me to death.

And this was, you were diagnosed in two thousand and nine.

Yes, yeah.

Is that right? Obviously, it’s eleven now so it’s not that long ago.

No, not really. Even in that short space of time though, I think things have improved a hell of a lot or although whether it’s just simply the fact that I’m more knowledgeable now so I know what I’m looking for but I think things don’t seem as scary, I suppose, as such to me anymore online. I kind of know what things to look for and what to avoid because I know that they’re probably dramatising something or they’re drawing off just one particular experience. Whereas obviously, I understand now that there is a wide range of experience what people can expect to suffer with and treatments and things like that. So there’s always a wide range of information. it’s just finding the right information, I suppose.

So are you able to now to filter the information?

Yeah, I think I’m a bit more knowledgeable of what to look out for and again, I almost know rather than Googling of a wide subject, I’m more specific to what I what answers I’m looking for now. So I think it’s easier for me to find out the information I need.

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Sabrina tried to find out about arthritis on the internet but didn’t understand the information…

Age at interview 16

Gender Female

Age at diagnosis 11

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Well when I just found out I had it I used to go I used to go and research about it and what the like the treatment and things like the history about behind it and that and I used to like I used to be like whatever used to research on, I used to bring up the information and like it would it would, at first it wouldn’t make sense but when I got a little a bit older, it made sense because I was young at that age and you don’t know much, anything about it but when you grow older you get to know like about everything, you get to know about loads of, you get to know loads of things.

Absolutely. Okay then. I was wondering whether, over the years, the doctors and the nurses helped you learn about arthritis?

They have, yeah.

How do they do that?

Getting me leaflets and booklets and they gave… they told me to come to a kind of a… I don’t know, like a kind of a youth, I don’t know. I could call it a youth centre like with different where different people have different conditions and they talk about their experience and like she used to give me some websites to go on, learn a bit more about my type of arthritis and that.

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School and studying

Sometimes people talked about how they learned about the biological side of arthritis by studying science and PE in school, college or university. Some university students read medical research papers on arthritis.
People who did not study science found the papers difficult to read. Catherine studied psychology. Through her studies she found a meditation technique that helped her cope with the pain.
When it comes to finding out about arthritis people said that “you learn as you go along” or you “muddle through” and gain experience.

Experience

Often people learned most about arthritis from living with the condition day-day. People developed knowledge about their bodies and limits overtime. People said it was important to “know your limits”, “pace yourself” and “make plans”. Parents talked about knowing their children better than anyone else and said they learned about arthritis by raising a child with the condition. Jazmin’s mum was very confident around doctors and was happy asking lots of questions. Jazmin said she learned to be confident by watching her mum.

Cat thinks that only other people with arthritis can fully understand what it feels like. You…

Age at interview 24

Gender Female

Age at diagnosis 14

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Just more the feelings about it like the frustration that we’re talking about earlier. Just, what it’s like to be in pain all day, every day because; I’ve even once, I’ve even once sat in a, in a consultation as a medical student where a patient, he didn’t have arthritis but he had some kind of condition where he was in pain and he was telling the GP that he was, that he was really struggling with the pain and the GP pretty much word for word said, "You’re just going to have to get on with it because you’ve got to deal with it." And I just think it just shows that you can’t understand what it’s like to have to put up with that twenty four seven. No you’re going to have put up with that twenty four seven for the rest of your life.

Unless you’ve actually been in that situation you can’t, you can’t possibly. I think the only people that I’ve ever spoken to that they say something about the disease and I go, ‘That’s exactly it, explain it better than I could,’ are the people that have also got RA. They’re the only people that just, it just makes sense to me what they’re saying and I think you can’t, you can’t, no doctor and you can’t learn that out of a text book, you can’t, you can’t learn that from a leaflet saying no parent or no, no doctor is ever going to understand those things properly. They can understand how drugs work, they can understand roughly how the disease works but they can’t understand what it’s like to actually have that disease.

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Sometimes people do not remember how they learned about arthritis but assume somebody must have told them in the past.

Beth feels like she knows a lot about her condition as people taught her about arthritis when she…

Age at interview 13

Gender Female

Age at diagnosis 4

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It might actually sound weird but I don’t, I usually just, sometimes my Mum, I think my mum and my family’s just told me about, about it and the hospitals told me more about it, but it’s like I, it’s like I remember when I was little what’s gone on, it’s like it’s all come back, so it’s like my brains just like a new brain. I know exactly what it’s about for some reason, even if no-one’s told me about it I feel like I know way more than anybody else knows about it for some reason.

it’s a bit weird.

So I wonder where that came from?

it’s just like I know everything about it, and I just can’t remember who has told me or what’s gone on, I just feel like I know everything about it.

I imagine it might be a bit of a daft question but do you still go looking for information now?

Sometimes if I go to the hospital for a check-up, they ask, Do you need any questions And I ask some questions like, How come I’m in so much pain in the morning or, And I’m not after school and stuff, but not very much. No, not much.

Okay, and do you ever go on-line or anything like that to find things out?

No. I don’t like, I don’t like going on and knowing about it because it makes me feel a bit, a bit uncomfortable. But it’s nice to know that other people have got it and they know how I would feel. Because we’d have something in common, not like, I like football, you like football Stuff like that, but as in we know what’s, what is going on and we have more in common cos we know how each other feel.

Do you, have you got friends with Arthritis?

Not that I know of, no. My Granddad, I think my Granddad’s got it in his fingers so he knows a bit about it, about how it can be painful and he’s very supportive about it, he likes to ask, If you’re in pain, you have got to tell me cos we’ll have to go back on the injections He’s very supportive but I don’t think any of my friends have got it no. I tell my friends so if I’m in pain they know why and they can take me to the teachers, and I’ve told the teachers well what’s happened and stuff. And if I need to like take a break or anything then I can. If I’m writing for a long time then my fingers start to hurt.

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Information services that hospitals offer can vary from region to region, but one thing that a lot of people we spoke to said is that things have improved a lot over time and that younger people have access to more information now than they ever have.

Hearing the diagnosis of arthritis

When people are diagnosed they are told what condition they have and given treatment. People are usually diagnosed with arthritis after various tests (see Arthritis...

Progression of arthritis in young people

Arthritis treatment has improved considerably over the last 10 years and the outlook is positive for people using modern medications such as biological therapies. Sometimes...