Marie

Age at interview: 33

Brief Outline: Marie is the mother of Ryan, a young boy with polyarticular juvenile idiopathic arthritis (JIA). Ryan had a hard time with arthritis until he was placed on a clinical trial. Marie left her job to look after Ryan full-time at home. Marie says that Ryan's care has improved since being on the clinical trial.

Background: Marie has taken time off work to care for her son, Ryan. Before Ryan was diagnosed with arthritis, Marie used to manage a hair salon. Marie lives with her two sons. Ryan is 12 and his brother is 16. Marie is separated from her husband and is white British.

More about me...

Marie is Ryan’s mum. Ryan has polyarticular juvenile idiopathic arthritis (JIA). 

 

By the time Ryan received his diagnosis he had pain and swelling in eleven different joints. He started to receive steroid injections in each joint but this made little difference. He was also given methotrexate injections but this did not work either. Ryan was angry that he had to have so many injections in hospital. A nurse trained Marie so she could give Ryan his methotrexate injections at home. However, on the days that he was due his injections Ryan stopped coming home from school. He missed a number of injections and his pain got worse and his body was seizing up. He was having problems with personal care (bathing, feeding etc.) and Marie left her job to look after him.

 

Ryan was invited to take part in a clinical trial for tocilizumab. The medication took about three months to work. During this time Ryan was absent from school because of the pain and swelling. Once the medication began to work Ryan’s condition improved dramatically. The number of inflamed joints reduced from eleven to four and his pain reduced. Ryan returned to school and has been there full-time for 5 months without a flare up. He now spends more time with his friends and is a lot happier in himself.

 

Marie is pleased that Ryan’s clinical trial medication has worked and that Ryan is more independent and back at school full-time. She is also happy with the clinical trial nurse who has cared for Ryan since the trial started. The nurse is in regular contact with Marie and Ryan and even texts to see how Ryan is. The nurse is very knowledgeable and answers any questions that Marie or Ryan has.

 

Before being placed on the clinical trial Marie had mixed opinions about Ryan’s care and support. Marie would have liked more information about arthritis from clinical staff and suggestions on where to find information. Marie has dyslexia and would have liked literature that was written in simple language and was more specific about the kind of arthritis that Ryan had. Because this information has been difficult to find, Marie feels she lacks confidence in making decisions about what is best for Ryan’s health care. Marie also struggled to find information about where to go for financial help. At one point she felt like she was made to “beg” for assistance – something she refused to do.

 

Because Ryan needed to visit hospital regularly, Marie underwent behavioural therapy to conquer her phobias of hospitals. 

 

Marie's son, Ryan, was scared because he did not know what arthritis was. The doctor could have explained the diagnosis better.

He just thought he’d caught a, because he knew it was a disease, he thought he’d caught a disease that was going to make him old and kill him basically. But I think the doctors could have helped with that though at the beginning to be fair because even through his diagnosis and stuff, they were just saying, they were just saying, “You’ve got polyarthritis, we’re diagnosing you with polyarthritis,” and then they’d say, “This is why your knee’s like that Ryan because you’ve got arthritis.” So he’s just assumed he’s got arthritis and that’s it now, he’s old, he’s got arthritis and he’s going to die but if they’d explained to him that a lot of children have arthritis, he’s not the only one, it can be helped and it he can have a decent life with it as well. I think that should have been explained pretty early on to him so he didn’t; his imagination didn’t run wild in the first place because he, he, his imagination can get the better of you I think especially when you haven’t got a lot to go on.

 

They didn’t explain the juvenile part neither to him that it, that to him, he took that juvenile meant young people but meant he caught arthritis as a young person so he was going to grow old and arthritis, that’s how he took it. But I think if they’d explained when they meant young people because there are lots of young people with it, it would have helped. It’s just not you that’s caught a disease, that’s an old people’s disease, is what he, it can, everyone does consider arthritis to be an old people’s disease to be fair. I think most adults do so he hadn’t gone to; his imagination was there to start I think.

 

Marie felt like she did not have enough information to make a decision about her son’s treatment...

Are you happy about your knowledge of arthritis now?

 

No

 

No?

 

No, I don’t think I know enough stuff. I don’t, I don’t think I know enough even about Ryan’s particular arthritis. I know Ryan’s arthritis, I know how it affects Ryan but I; no I don’t think I know the ins and outs of it properly. I know it’s to do with the blood like I said and what the medicine’s trying to do but I’d say I’ve still got a basic knowledge but I’ve got a decent knowledge because of Ryan having it but I, from no knowledge to basic, because I don’t think it’s enough. For me, because I’ve got to make a lot of decisions for Ryan you see and I don’t think I know enough and I could actually know enough if the doctors just said well you know what you’re talking about then, I’d, I’d feel more safe, secure in myself to say, with Ryan I can make, I can make this decision for him to go on this drug then, that I know enough to be able to say, “Yeah, OK let’s do this.” But I don’t think I do, I do know enough myself to, to, to have to make these decisions but I’ve got to make the decisions anyway so…

 

Marie and Ryan were stuck at home because he didn't have a wheelchair that fitted. He didn't want...

The wheelchair – he needed it for the year before; he needed it for a long time. I actually borrowed one from my Mum’s boyfriend which was obviously massive to him. It didn’t have a seat belt and Ryan kept falling out of it when I was trying to push him round town because our town is quite a bobbly streets and he got measured for it so he was quite excited then Ryan, thinking, “I’m going to be able to get out now,” so, “I’ll be able to go the shops.” I could then actually go anywhere shopping because I could push him and I could take a basket. So he was quite happy about that but it, actually it took seven months for it to actually get to Ryan, Ryan was actually getting better on his flare ups so he hasn’t actually used it now but for the time I needed it, I didn’t have it and it actually it, when, when it was fitted to him, he had space each side of the wheelchair, now he has no space at all and the back is quite low to the size of him now. So it, it’s not really appropriate for him now anymore but it would have really come in handy, it would have got me and my son out the house a bit more because we were literally stuck in because even if we went out in the car, it’s getting back out the car to do, go round anywhere to the point – his birthday last year which is in January, he didn’t want to go, have a party, he didn’t want to go to the Zoo, he didn’t want to go for a fun fair, he didn’t want to go anywhere because he had no wheelchair basically to get him about and he don’t want everybody; he basically said he did not want to slow everyone else down. 

Marie and an occupational therapist went to a showroom to find an accessible bath for her son,...

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.

Marie had a phobia of hospitals and used to have panic attacks when she went to her son’s clinic....

No I had to go to behavioural therapy because I don’t go to hospitals. I basically wouldn’t go to hospital for anything so because Ryan had to go to hospital all the time, I was on panic attacks and they were getting worse and worse but I had to go because I have to get Ryan seen to and I’ve; I don’t know why but it’s probably something to do with me being a child but whatever reason, I just have panic attacks going to hospital. So I had to go through steps to get, to get into hospital because I could, if, friend used to, Ryan’s seen me freaking out walking into the hospital but I was just having a panic attack and him seeing that wasn’t helping him be comfortable going to hospital. So I went to, it’s called behavioural therapy, so they like try and change your behaviour and your thoughts so you don’t panic and so on whatever. When, now four years on I’m doing pretty well. So I don’t go anymore but I can actually walk in a hospital now where before I’d walk in a hospital, straight to the toilet, try and calm down and then come back out again, sit somewhere for five and then off again. I couldn’t actually stay still and when I’ve got to wait, when it’s got to be Ryan, you know, I’ve got, with me I can choose to walk in and out and not get treated but with Ryan I couldn’t choose that so I had to stay, I had to get through my panic attacks and stuff like that with it but….it worked and I can do the hospitals now with him and he doesn’t see me panicking which then helps him be more calmer about going.