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Paul

Brief Outline: Paul's daughter Elizabeth (Interview 31) was diagnosed at 18 months with JIA. Paul has helped his daughter develop strategies for dealing with health professionals.
Background: Paul is married with three grown up children, aged 26, 22 and 19. His youngest child Elizabeth has juvenile idiopathic arthritis (JIA). Paul is self-employed, and is white European.

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Paul and his wife noticed that their daughter Elizabeth experienced difficulty coming down the stairs when she was 18 months old. Initially they thought that Elizabeth had problems with her balance because of an ear infection, but this problem did not clear up and they took her to the local GP practice. A paediatric-trained locum referred them to a consultant rheumatologist and Elizabeth was diagnosed with juvenile idiopathic arthritis (JIA).
 
After this the family attended a weekend for parents and children run by Arthritis Care. They found this helpful and it made them feel less isolated.
 
Paul describes himself and his daughter as “a self-taught expert” about arthritis. Paul has encouraged his daughter from an early age to seek clarification from health professionals when they talked about something she did not understand. 
 
Paul sees a difference between services provided for children, and those for adults, and has encouraged his daughter to “bang all the doors” before she moved to adult services “because the funding seems to dry up a lot more”. When Elizabeth became older Paul took less of a role at his daughter’s clinic appointments allowing her to take more “ownership” in preparation for her move to adult services. 
 
Paul recommends parents or partners share and take turns going to the clinic so that this does not become one person’s responsibility. Paul also feels it would be useful to bring together educators, social services, and professionals to discuss a child’s support needs.
 
Paul suggests keeping a diary of treatments and decisions made over the years so it is easier to look back at pathways taken at earlier stages of treatment.
 
 

Paul’s daughter, Elizabeth, was having difficulties walking down the stairs. He made an...

Paul’s daughter, Elizabeth, was having difficulties walking down the stairs. He made an...

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When she was 18 months old she started coming downstairs walking and all that and we noticed that she started hanging onto the banisters to come down the stairs and so it was something to do with balance. We thought it was an ear infection because she had a bit of a sniff and cold and a bit of a sort of a virus at the time. And so it didn’t clear up and she still hung onto the banisters so we actually went down to the doctor and no disrespect to our GP, but luckily he was on holiday and we had a stand-in locum who was paediatric trained. 
 
And after the first consultation he referred her to a super-fast clinic, direct to the local area consultant rheumatology and the next day we saw the consultant NHS. And that consultant in 1993 is still the same consultant seeing Elizabeth what 17 years later with the same physiotherapist and the same rheumatology team. 
 
So from the outset that was our experience of the NHS. So we’ll go on from there.
 
That’s quite remarkable then so was the diagnosis quite quick?
 
The diagnosis was after a few blood tests and other things I can’t remember, was literally you know within a week I would think, or on that day it could be because we were obviously shell shocked
 
 

Paul encouraged his daughter’s independence by encouraging her to think about what she wanted out...

Paul encouraged his daughter’s independence by encouraging her to think about what she wanted out...

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Do you think parents play a role in that transition?
 
I think the transition as well as “Right well you can, you can go there, I’ll sit outside perhaps.” I’ll drive the car but I’m only the driver. And just taking less of a role in each of the interviews, starting from 14 or even earlier than that. Less of a role. Talk about what you want out of out of a visit, a consultation, what are we here for? We’re not here just to be guinea pigs to be looked at, prodded. We’re here because we want to know something, we want to get to somewhere. We want a hip replacement. We want to train the doctor to think about something. You know introduce a new topic. And sometimes you, it might take a year for the doctor to sort of like cotton on and even if it, after a year the doctors thinks, “Well that’s a, that’s a good idea of mine,” yeah let him think it’s a, like you’ve introduced it two years before. So it’s about, it’s about letting the child take more ownership, more and more and more, until you sit in the corner and you open the door and let, and you, and that’s it. And I think it’s perfect, you’ve achieved, if you don’t have to say anything, they just say “Thank you, thank you, bye.” You have achieved it. Because then that child or young adult is then ready to face adult services. Yeah.
 
 

Paul’s daughter, Elizabeth, passed her driving test when she was 16. Her driving examiner didn't...

Paul’s daughter, Elizabeth, passed her driving test when she was 16. Her driving examiner didn't...

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At 16 get them driving. Motability you know Elizabeth passed her test at 16 and she had just a fight to do that. She went; she did all the driving tests driving lessons, fantastic driving lessons. She went for the driving test, she was on crutches the Driving Instructor went up to the first floor of the examiners’ office and basically had an argument with the examiner saying, “Oh if she’s on crutches, oh she can’t take the test then.” “Well she’s on crutches,” “Well no she’s on crutches because she’s got arthritis.” “Well if she’s on crutches she can’t possibly drive.” And then, that was before she said, “Hang on, she’s 16. You can’t drive a car when you’re 16.” And then the driving instructor said, “Of course you can drive a car when you’re 16 if it’s a Motability, disabled driver,” and the examiner had never heard of it. And so that’s the level of ignorance that you have to fight on a daily basis.
 
Is it quite common to hear these stories?
 
Well I don’t know whether it’s common but it seemed, well certainly the driving instructor was bowled over by the attitude, you know, and sometimes Elizabeth’s so, Elizabeth’s driving now as an 18 year old, that’s not such a big deal, but as a 16 year old you know there was a, seemed to be a big deal. The college for instance didn’t have any mechanism for a 16 year old driving a car. Where does she, where does she park it? Oh no Lower Sixth can’t drive to school. They can’t park anywhere at the college. So she had to negotiate on a one to one basis where to park. So it was that sort of disability rights that makes the character that we talked about earlier.
 
 

Paul wants the doctor to speak directly to his daughter, Elizabeth. He sits further back and only...

Paul wants the doctor to speak directly to his daughter, Elizabeth. He sits further back and only...

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Well I make a point. I sit just off of the eye contact, so I, it’s a triangular, you know and you’re right, I mean he didn’t I think modern training and modern views, that’s certainly when they get to 12 or 11 or 12 they certainly do start talking direct and it’s, it’s only at the end of the interview or consultation that I’d, I’d ask the extra questions that perhaps a parent wants to know. And you know long term effects or drugs or whatever. And but it that can happen, yeah, but I’ve always you know it’s like disabled persons on a different level in a wheelchair, you know you step aside and hopefully the other person will engage direct. Yeah.

 

Do not get “rubbed up the wrong way” if young people know more than you about their condition....

Do not get “rubbed up the wrong way” if young people know more than you about their condition....

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A hypopyon where you get a line across their eye. You know it’s not that common but so when junior staff or younger doctors and nurses have a 14 year old try and tell them what the what it is, or what she’s got, they, they sometimes get rubbed up the wrong way. Professional pride or whatever.
 
Yeah, so they like to say, “Well this is what you’ve got,” and you say, “Well,” or Elizabeth said, “Well I know what I’ve got.” So there.
 
Has that changed over time then?
 
I think it has because I remember the first time you know the doctors sort of looked at her; dismissed her almost you know just as a patient, not as a very young expert of her own condition. And I’ve got to say that the consultant we have with the NHS, there is a fantastic banter between Elizabeth and him and you know he’s obviously a lot older in his, but he’s been with her for 17 years and really you know they’ll negotiate medicine. You know and she’ll say, “Well I don’t want to take that one.” Or “I hate it.” Or, “The methotrexate makes me sick. I don’t want injections.” You know or whatever, “I want a strawberry flavoured,” And they’ll actually negotiate and say, “Well okay, you can’t have that, or you can have that.” And it’s really good.
 
 

Figure out what financial entitlements your son or daughter is entitled to, such as Disability...

Figure out what financial entitlements your son or daughter is entitled to, such as Disability...

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Well it’s, you know as I said before it’s a tremendous shock, its life changing like any illness, long term illness. But treated with strategy it’s hard to do, try and look possibly dispassionately as if someone else would be looking in on your case, and try and work out you know what you’re entitled to, and what, ‘cos sometimes you feel guilty asking for something because it’s your role as a parent, that’s what you should be doing as a parent anyway. But wait a minute, you’re not getting it for yourself, you’re not beavering it away into a stash to go off to Trinidad on a holiday. You know if she’s entitled to disability then you get disability because at the end of the day if you don’t ask for something and you don’t get it in the right, in the name of your child then you will only make it difficult later on in life I think. That’s my personal view. So you are the champion of your child. Do it for your child and but always keep an eye on your own well-being.

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