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Teresa

Age at interview: 55
Brief Outline: Teresa is Elly's mum. Elly has juvenile idiopathic arthritis (JIA). Teresa was upset when she heard that Elly had arthritis but please to hear that few children are now in wheelchairs because of arthritis.
Background: Teresa is married and has 4 children. She is white British.

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Teresa is Elly’s mum. Elly has juvenile idiopathic arthritis (JIA). Elly’s symptoms began with a painful finger. Teresa took Elly to see her GP because the pain did not go away in three days. The GP first thought that Elly had an infection and prescribed antibiotics. The antibiotics did not work so the GP referred Elly to a doctor who specialises in hand injuries. The specialist suspected that Elly needed an operation. By this time Elly had pain in several fingers. The specialist referred Elly to a rheumatologist who diagnosed her with JIA. 
 
Teresa was shocked by the diagnosis and found it upsetting. She did not know much about arthritis and had an image in her head of an elderly lady who had difficulties using her hands. She said, “You do instantly think they won’t be able to do anything. […] But then you just get on with it really.” Teresa said that Elly had always been “perfectly healthy” and that she only ever had “normal childhood illnesses”.
 
Teresa wanted to be sure that Elly was getting the best treatment and phoned around different rheumatology clinics asking for advice. Elly also visited a new rheumatology team. Teresa said that there were seven or eight people in the room and she was impressed with how pro-active they all were. Elly was admitted to hospital for more tests and observations. She had steroid injections and was given hydrotherapy and physiotherapy. Splints were also made for her. Teresa said, “It was very good but they were upbeat about it, very positive […] Ellen was fine with it, because there were things for her to do, play, I don’t think she was scared by it”. Teresa was reassured by staff who said that it was rare to see young people in wheelchairs nowadays because of arthritis.
 
Teresa and her husband took their children to an activities weekend called “Children have arthritis too” run by a group of volunteers. Teresa was not sure if Elly liked the weekend because it drew attention to her arthritis. Elly’s parents, brother and sisters enjoyed the sessions and learned about the condition. Parents could go along to these sessions and talk about their experiences. Teresa said she learned a lot by speaking to young people who have lived with arthritis for several years.
 
Elly’s brother and sisters would always accommodate Elly. For example, they would walk slowly if Elly was having a bad day. Teresa said, “Nobody would ever complain if we couldn’t do something because Ellen couldn’t do it.” Because Elly talks to Teresa about her arthritis more than other people in the family she understands her moods better and sometimes explains things to others when Elly is having a bad day.
 
 

When Teresa and her daughter, Elly, went to a consultation there were 7 or 8 people in the room....

When Teresa and her daughter, Elly, went to a consultation there were 7 or 8 people in the room....

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We went there, my husband came too, so the, we toddled along and I can’t remember how long we had to wait for a first appointment, I don’t think it was too bad. We went along and there were, I can’t remember how many adults were in the room but there must’ve been seven or eight whereas before we’d only ever seen a consultant and his nurse, and this time there was the consultant, there was the senior reg or whatever you call them, and there was an OT and a Physiotherapist. And there was the social worker and there was the nurse specialist and I think there was a student probably, and somebody else. 
 
 And they were very good. They were very proactive. And within a week they had Ellen in hospital for a week to get a good look at her and she had, I think she had a couple of steroid injections and something else. And then she had a lot of hydrotherapy and physiotherapy and splints made. I mean it was absolutely astounding, you wouldn’t think they were all treating the same illness. It was very good but they were very upbeat about it, very positive and very, I mean Ellen was fine with it, because there were things for her to do, play, I don’t think she was scared by it. So it was quite different.
 
It sounds very different?
 
It was very different, well it was, as my husband said it was proactive, so it was like, “Okay, well yeah, but let’s get on with it. Let’s do something.” Not, “Oh we’ve got to live with what you’ve got.” It was, “Let’s get on with it and make life better.”
 
Can you give me an example of the kind of things that they were proactive about?
 
Well it was, well for a start getting her into hospital and taking it seriously was proactive. And, and giving her hydrotherapy, showing her how to do the exercises. Showing her you know the splints, showing us how to that kind of thing. So I don’t think at that stage they got involved with the school ‘cos she was still at junior school. No, not at that stage. But it was just a general interest and the quite positive thing about, “Well we, you know we will be able to make life better really.”
 
Okay.
 
It was good. Very positive. And the other thing they said, I do remember this, they said, “Ten years ago you would have seen children in wheelchairs here,” and all the time we went to that hospital I think only once did we see a child in a wheelchair with arthritis. And they were saying that that’s because actually we do stuff now, we don’t just say, you know treatments changed. And treatment had changed. I mean the drugs have changed yeah, so they were very positive. I hope it’s even better now, I don’t know.
 
 

Elly never liked talking to doctors when she was younger so her mum, Teresa, spoke on her behalf.

Elly never liked talking to doctors when she was younger so her mum, Teresa, spoke on her behalf.

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She didn’t like answering questions when she was younger, so...
 
No.
 
she’d be quiet?
 
Yeah.
 
So you’d have to speak for her?
 
Yeah. She would never, yeah she would never, you’d sit there and think, “I can’t ask her,” I don’t know how, ‘cos they always ask the children, they always ask them the questions, “How long does it take you in the morning until you’re not stiff anymore?” I can’t answer that question, I don’t know, but she would never really answer it, or she would always just, or they’d say, “How are you?” And she would always say, “I’m fine.” “It’s fine.” And the, ‘cos she didn’t like answering, she, I think she’s, well she’s better now but I, I imagine that’s not atypical of children, of people anyway. But they just don’t want to make a big fuss actually. I don’t know; it must be very hard for the doctors.
 
It’s quite hard to articulate as well for children.
 
Yeah.
 
“What kind of pain is it?” “It just hurts.”
 
“Well it just hurts.” “Well what do you mean on a scale of 1 to?” “Well what do you mean? It just hurts.” And, and you kind of forget, if it’s not hurting then you deliberately draw a veil over things don’t you? ‘Cos it might go away then.
 
 

Teresa’s daughter, Elly, had an “absolute fear” of medication and used to fight, scream and run...

Teresa’s daughter, Elly, had an “absolute fear” of medication and used to fight, scream and run...

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She was awful. She turned into the most horrendous child. She knows that, she turned into the child from hell. I had to take her every week, for a blood test she had no problem with the blood test. Fine with the blood test, and an injection, the weekly injections. So by that stage she was probably about 11 or 12, and she would kick me, she would scream, she would hit me; you had to hold her down. It was a nightmare. It was a fight every time. And once at the hospital where she was meant to be having one done, I can’t remember why they were doing it there, or perhaps that was still blood tests in those days ‘cos she wouldn’t, she didn’t like either of those, actually. She ran off down corridors, we all had to go to find her. Absolute fear of the medication, and now she gives herself weekly injections, but she was absolutely terrified.
 
Wow.
 
Yeah. Nightmare. Awful. She turned into this like mad woman. She just, these eyes just went, it was nothing to do with the arthritis, it was the treatment. But that wasn’t anybody’s fault it was just the way she was. Actually they referred her to a, I’ve forgotten that they referred her to a hypnotherapist and all sorts. Psychiatrist at one point.
 
They actually saw her, did they?
 
They saw her, yeah.
 
Did they give her strategies, or things to do or?
 
I don’t know what they did. It didn’t work. Nothing worked. We saw the psychiatrist and Ellen could see straight through all those I’m afraid; she had the most ridiculous questions so she wouldn’t answer any of them. There was nothing wrong with her she was just being awful.
 
She mentioned that.
 
And she was scared actually.
 
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