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.

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.

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.