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Stacey

Age at interview: 40
Brief Outline: Stacey is Bradley's mum. Bradley has enthesitis-related juvenile idiopathic arthritis (JIA). She was devastated when Bradley was diagnosed but is pleased with his healthcare team and how well the methotrexate has worked.
Background: Stacey is an administrator. She is married and has two children aged fourteen and eleven. She is white British.

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Stacey is Bradley’s mum. Bradley has enthesitis-related juvenile idiopathic arthritis (JIA). Bradley was fourteen at the time of the interview and was diagnosed when he was twelve.
 
Bradley first had a problem with his elbow. He had difficulties doing his tie for school. Stacey assumed that he slept funny and thought nothing of it. Several weeks later Bradley’s ankle swelled and he struggled to walk. Stacey thought that he twisted his ankle. Bradley’s groin then became swollen. It was at this point that Stacey knew “there’s something really wrong here” and took him to Accident and Emergency (A&E). 
 
The doctor in A&E said that Bradley had pulled a muscle. They gave him painkillers and sent him home. When the swelling did not go down Stacey took Bradley back to A&E. Bradley had an x-ray but nothing was found. Stacey felt that the A&E staff did not know what they were looking for. They said he had a pulled muscle and sent him home on crutches. Stacey was unhappy and paid to see a doctor privately. The doctor said that Bradley needed surgery. Bradley’s parents were not convinced that surgery was the answer so they paid again to see another doctor privately. The doctor did an aspiration of Bradley’s groin and first suspected that he had gout. He referred Bradley to hospital for further tests. Bradley stayed there for a week and was given painkillers which did help with the pain. His symptoms got worse. He developed swelling in his elbow and leg. Stacey said that it was “frustrating” and “soul destroying” waiting for a diagnosis. Several different doctors in hospital saw Bradley. One suspected that he had arthritis. He referred Bradley to a specialist children’s hospital. At the hospital a rheumatologist conducted various tests and diagnosed Bradley with arthritis.
 
Stacey said was “devastated” when Bradley was diagnosed. She thought Bradley might end up in a wheelchair. She also tried to remain practical and said “now I have the diagnosis we need to face it, we need to deal with it”. Bradley was given methotrexate to take. Although he was often sick after taking his medication the arthritis has improved. Stacey said it “doesn’t affect his life. He’s walking, he’s running, he’s playing football twice a week […] he’s in remission so we just thank the methotrexate”.
 
Stacey had lots of positive things to say about Bradley’s healthcare team. She said she was pleased with how quick the consultant diagnosed Bradley. She said that she gets good information from the consultant and nurse. She sometimes goes to the clinic with a list of questions which she gets answers to. Stacey likes the fact that the consultant talks to Bradley directly. Stacey said, “I feel like we’re not just a statistic”.
 
 

Bradley’s parents did not agree with the A&E doctors who said that his groin pain was caused by a...

Bradley’s parents did not agree with the A&E doctors who said that his groin pain was caused by a...

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I mean the first time we went I think, I'm trying to think back, we were there for a while and they felt his leg and doing all this poking around and I don't even think he had an x-ray that time. It was just, "No it's not a hernia," they were looking for and, "Oh it's just a pulled muscle, go away, take some Nurofen (ibuprofen), he'll be fine." But the second time when we went he had, he did have an x-ray, they call it a Frog x-ray where he had to open his legs out to take an x-ray of the groin and again I don't think they really knew. It was just, "Oh yes, he's pulled a muscle,' sent him out on crutches and I just thought, 'You know what, this is not a pulled muscle, this is more…' In fact I think it was twice we went because now I recall that it was after that second time that I said, "This is, we've got to go further, we've got to go privately because we need, he needs further tests."
 
So we then went to see a doctor privately because we just, we had to know, we couldn't wait any longer and watch him be in pain. Which is what we did and after various tests and being told that Bradley needed an operation we then ended up back in, through NHS where they kept him in actually for a week. More tests and eventually he was referred to hospital which is where, again more tests and then he was diagnosed that he has JIA and also enthesitis.
 
 

Bradley’s symptoms improved lots when he started taking methotrexate. His mum said he had not had...

Bradley’s symptoms improved lots when he started taking methotrexate. His mum said he had not had...

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Can I ask if your thoughts and feelings about arthritis have changed over time then?
 
I think because with Brad it's, people don't know he's got it. We think that he's, he coped really well and thankfully, I touch wood as I say this, he hasn't had any flare-ups, it doesn't affect his life. He's walking, he's running, he's playing football twice a week, he's completely, I mean when we go, when he gets checked out, he's in remission so we just thank the methotrexate, and we don't - we did use to talk about it, we did used to say, you know, if he said, "Well I've got a slight niggle in my foot, can you have a look," but now it, we don't even, it's just the norm, we don't sit, we don't really discuss it unless he has a flare-up. I mean he did have one about coming on for a year ago I think, his ankle, it was the knee actually I think and we had to go for a steroid injection. When we got there for the injection it had pretty much gone down. He has been put on prednisolone in the past and that's obviously worked and he didn't even need the injection so…we just sort of, I think we think we're quite blessed really that yes he has got JIA (Juvenile Idiopathic Arthritis) but it doesn't affect his life thankfully.
 
 

Bradley was in remission but still took methotrexate. His condition improved so much that he...

Bradley was in remission but still took methotrexate. His condition improved so much that he...

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Can I ask if your thoughts and feelings about arthritis have changed over time then?
 
I think because with Brad it's, people don't know he's got it. We think that he's, he coped really well and thankfully, I touch wood as I say this, he hasn't had any flare-ups, it doesn't affect his life. He's walking, he's running, he's playing football twice a week, he's completely, I mean when we go, when he gets checked out, he's in remission so we just thank the methotrexate and we did use to talk about it, we did used to say, you know, if he said, "Well I've got a slight niggle in my foot, can you have a look," but now it, we don't even, it's just the norm, we don't sit, we don't really discuss it unless he has a flare-up. I mean he did have one about coming on for a year ago I think, his ankle, it was the knee actually I think and we had to go for a steroid injection. When we got there for the injection it had pretty much gone down. He has been put on prednisolone in the past and that's obviously worked and he didn't even need the injection so…we just sort of, I think we think we're quite blessed really that yes he has got JIA but it doesn't affect his life thankfully.
 
 

Talk to the young person, not the parent.

Talk to the young person, not the parent.

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I mean it's their sort of bedside manner if you like, they're so helpful and I, when I go with Bradley, you know, they basically, they're talking to Bradley not me. I mean he's old enough to know and they ask him, "Have you got any questions? Do you want to know anything?" It's a very relaxed atmosphere when we go and as I say because we have got to know them now it's not just, I feel like we're not just a statistic if you like. They, they know us, certainly the nurse, I mean she's so good and you know, not only does she speak to me sometimes, she's spoken to Bradley before on the phone as well if ever we've got any issues and she's very kind of gentle and understanding, reassuring, they just, they care, they do care and they certainly, they do know, they know us. Sometimes when you go to a doctor it's, 'Oh we're just another patient,' but they know the history, they do remember. Of course they've got the notes in front of them but we just feel that we know them better now. I can't, I can't even, I can't fault them, I think they're fantastic really, they do look after him.

 

Be determined and speak up if you think there is something wrong.

Be determined and speak up if you think there is something wrong.

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I mean of course I didn't want to see him in as much pain as what he went through at the start but I don't think I would have changed it. I think that we were quite, what's the word? We kept, not demanding but we were very, we knew there was something wrong and you just have to keep going, keep going and not sort of let it lie. We, we just knew, there's something wrong, we have to find, we just have to find what it is and we were determined to and we did. So…we were never in denial. I know some people probably think, 'Oh no it's not that, it's nothing.' We knew we were dealing with something a bit more serious than just a pulled muscle and we were just very determined really and spoke up and you know made it really clear how we felt and how we wanted to move on and made that clear with the doctors as well.

 

Sometimes you have to just “get on with it” and deal with whatever life throws at you. Try to...

Sometimes you have to just “get on with it” and deal with whatever life throws at you. Try to...

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I would say that you do have to really just get on with it and not sort of think and harp on it because we've always just moved forward; we don't move backwards, we just carry on. And if we do get a flare up we'll deal with it. I think, I never expected that Bradley would be the way he is actually, I thought, you know, he's going to be limping for ever because you just do but I just think the methotrexate, it just controls it and the way I see it – we will, well the nurses at the hospital and us, we monitor. We know exactly what's going on in Bradley's body. Some parents haven't got a clue what's going in their children's bodies but I know what's going on with Bradley. I'm very on the ball when it comes to treatment, keeping his appointments, all the paperwork; I keep everything completely in order. I know every appointment date and you've just got to be positive, there's no point in, in really harping on it because you want to make it as easy for the child. You don't want to sit and talk about it all the time and talk about it with other people all the time. He just needs to be normal and I mean his friends all know the condition that he has and it makes absolutely no difference. They don't treat him any differently, they don't see him any differently and that's all that I want. I just want him to be, he's Bradley, that's it.

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