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Robert and Karen

Age at interview: 45
Brief Outline: Robert and Karen did not suspect that Charlotte had arthritis at first. However, once Charlotte's symptoms deteriorated they had to fight against the view that Charlotte was simply experiencing growing pains. As soon as Charlotte was diagnosed her care dramatically improved and her parents are very happy with the services.
Background: Robert and Karen are married and live with their daughter, Charlotte aged 17. Robert and Karen also have a son aged 19 who is in the army and lives away from home. Robert is a Warrant Officer (Class 2) in the army. Karen works in retail. They are white British.

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Robert and Karen are the parents of Charlotte, a 17 year old woman who was recently diagnosed with rheumatoid arthritis. 
 
Charlotte came home from boarding school after developing aches and pains in her joints. Her thumbs were particularly sore. Charlotte was studying for her GCSEs at the time and was also a keen boxer and horse rider. Robert and Karen originally suspected that Charlotte’s discomfort was caused by the stress and strain of too much study and sport. Charlotte’s pain got worse so Karen took her to see a local GP. The GP said that Charlotte was experiencing normal growing pains and prescribed painkillers. At first Robert and Karen trusted the GP’s opinion. However, Charlotte’s pain spread to other joints and some of them began to swell. Robert – a warrant officer in the army – recognised that Charlotte’s pain was inconsistent with sporting injuries. Karen took Charlotte to see several different doctors but was told by each that Charlotte had growing pains and prescribed painkillers. 
 
Karen describes this period as a “real fight” to convince doctors that further tests were needed.  She was worried that others thought she was a “neurotic mother” because of her insistence for medical attention.  Eventually, Karen found a GP that recognised that Charlotte’s discomfort may not be caused by growing and development. The GP ordered blood tests and Charlotte was referred to a rheumatologist. After further tests, Charlotte was diagnosed with arthritis.
 
Robert and Karen were shocked to learn that Charlotte had arthritis. Robert was relieved that a diagnosis was finally made. Although Charlotte’s health care team are still trying to find which medicines and dosage are best for Charlotte, both Robert and Karen are happy with the support they have been given. They feel lucky that they have access to a specialist clinic which is a national centre of excellence. When Charlotte has a bad patch it is Karen who provides support with personal care. Robert has made adaptations to the family home such as fitting a walk-in shower.
 
 

Neither Charlotte Z's parents, Robert and Karen, nor the GP suspected she had a medical condition...

Neither Charlotte Z's parents, Robert and Karen, nor the GP suspected she had a medical condition...

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Karen' I think it was back in February. Charlotte’s always complained of sore knees and we took her to the doctors when she was younger, seven but they always said they were growing pains, nothing was ever, never looked into or anything. And now, when we look back, we think maybe that was the beginning of it but it really became an issue in February. Charlotte used to go to boarding school. She came home ill and she had about a week off and then she went back because she was perfectly healthy before that week and she started complaining of joints hurting, mostly her thumbs started to ache.
 
But we just put that down, she was doing GCSEs at the time, a lot of work and she used to box and we just put it down to all things that connected with that. Then wrists were hurting and we just, once again said it was all the jolting from the boxing and her feet were sore and we put that down to she needed new shoes. Never once connected that she had an illness or anything. 
 
Anyway, it got to the point where her thumbs were so sore we ended up taking her to the doctors and he, once again, said it was loose ligaments and it was normal in a child of her age. Again, about I think about two weeks later, she still she couldn’t write.
 
But like I say, the symptoms were just normal. Nothing out of the, that you’d put down to arthritis. Never once clicked.
 
Robert' However, when she was boxing, she was complaining of how much it hurt her wrists and ankles and stuff like that and getting injured but the injuries weren’t sort of consistent with the boxing making it worse more but she used to just carry on with the boxing and just associated with the normal pain from boxing but it wasn’t.
 
Karen' Yeah.
 
Robert' Her and her energies weren’t sort of getting any better. You know.
 
Karen' But she didn’t complain too much because she wanted to, she loved it, enjoyed her boxing and things so Charlotte never, didn’t tell us the full extent of what pain she was in because she thought we’d stop her from boxing. She wanted to carry on as normal as she could. So, yeah.
 
 

Charlotte Z’s dad, Robert, was frustrated when doctors failed to diagnose his daughter. He...

Charlotte Z’s dad, Robert, was frustrated when doctors failed to diagnose his daughter. He...

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Robert' Well… initially, I was like, well, you know, lazy teenagers type syndrome but then I was thinking, no, something is a bit up now. Something is a bit wrong. See what I mean. But, you know, if you if you’re going to the doctors every week to try and get a diagnosis and they’re telling you it’s loose ligaments and that, then what do you do? You know there’s something up with your daughter but you sort of begin questioning yourself or you’re then trying to question the doctors. See what I mean. But if you go into a doctor and say, “Oh, I’ve just been on the internet. This site here looks really good. It sounds like she’s got the symptoms of arthritis.” Or lupus or any other thing where your bones ache, doctor’s going to kind of look at you like that isn’t he and say, “Well, I’ve just spent ten years at college and you’ve done seven minutes on the internet.” 
 
So but my feelings on it, frustration really because you think, you was thinking all sorts, whether I remember thinking its cancer or something else more life threatening. But you just want that diagnosis. Once you’ve got it, I was happy with it, you know, and I shook the blokes hand when he gave us the diagnosis. I said, “Oh, thanks for that. Cheers. Fantastic.” Because I knew, you’ve then got a diagnosis, haven’t you. You’re not questioning your own mind then.
 
 

Charlotte Z has a teaching assistant to carry her bags, a laptop so she doesn’t have to write by...

Charlotte Z has a teaching assistant to carry her bags, a laptop so she doesn’t have to write by...

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Robert' Right, she’d already we’d already applied to put her in at college. When we applied for her to go that college, she didn’t have arthritis. We didn’t know anything about it. As soon as we found out, we told them and they were really good weren’t they.
 
Karen' Yeah. They have a nurse that works at the college. I don’t know if every college has got a nurse but this college has a nurse and Charlotte and I, as soon as we found out Charlotte had been diagnosed, we went and had a meeting, couple of weeks later, with the nurse and with, I don’t know if she was a lady that does the funding for the college. I can’t remember now, unfortunately, but she came down to the meeting as well and they were asking what support Charlotte needs, what equipment she needed and that that’s how she’s got the, they recommended to my other.
 
Robert' She’s got a laptop in class, so she doesn’t have to write, because it’s easier to tap your fingers than it is to write. So that helps. 
 
Karen' The TA she’s got.
 
Robert' The teaching assistant was already, they’d already got her in, or something, for some other girl in the class but, to a degree, the college have been helpful because the funding is there for a TA for whatever reason is keeping that TA employed isn’t it. Charlotte sometimes finds it a hindrance but if you need a TA or somebody to help you even carry her bags I think.
 
Karen' Yeah, she’s there for, they did say that she’s there for everything.
 
Robert' But if you get, but some, you know, she’s there to carry her bags as she gets off the train because from the train station to the college is about, you know where you come in the front gate, just to where you turn round the bottom, just down there, that is about the distance she has to walk. So it isn’t that far but then she has to get go up to the like top floor where she can use the lift. All the other students have to use the stairs. So they you get teachers saying, “Why are you using the lift?” You see what I mean. And she goes, “Oh, I’ve got arthritis and that. Oh.” See what I mean. It’s like when she goes in the disabled toilet and walks in there perfectly normal, “Why are you using that then?” Because they think oh, she’s a student trying to like get away with like breaking the rules. But in regards to, I mean she had three days off this week, so it’s just a case of phoning in. They’re good because most of the stuff they e-mail and all the work she’s been submitting in submitting anyway has all been distinction standard.
 
Okay. So her work isn’t necessarily affected?
 
Robert' No and I would say she’s doing she’s probably doing better than anybody else in that college but that’s only because.
 
Karen' She’s determined.
 
Robert' She’s used to go to boarding school and they used to force prep periods on her at night, so she’s had that sort of discipline of learning. 
 
 

Robert and Karen were proactive in finding out about the financial support their daughter,...

Robert and Karen were proactive in finding out about the financial support their daughter,...

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Robert' You have got to go and look for it although, when they tell you this is the number you phone then a lot of people might not phone it because they might be too embarrassed or they don’t want to or they just want to crack on and, so you might as well take all the help that’s out there because it’s there.
 
But we’ve pushed it haven’t we. It’s like when we took, when [name] was taking her down the hospital going, “I’m not happy with the GP saying she’s got growing pains.” And we just kept pushing it. So I don’t know, if I was honest with you, the information is out there and if people aren’t getting that information, I’m not going to say it’s their fault but then get on a computer, phone people up, there’s helpline support out there. Citizen’s Advice Bureau, everyone knows.
 
Karen' They were really good.
 
Robert' There’s a phone number for that in the Yellow Pages. They’ve been there years, haven’t they.
 
Karen' They were very helpful with the disability, they filled the forms in for me.
 
Robert' Obviously, yeah.
 
Karen' Helped me, not filled them in, helped me fill them in.
 
Robert' We filled the majority of them in and he just.
 
Karen' Yeah.
 
Robert' Checked them and said, “Put that in, put that in, that bit there might help you.” 
 
Karen' As for the Blue Badge bit, you said that people had asked you about that, that that’s your local council. That that’s you just phone your local council and they’re the ones that decide whether.
 
Robert' She’s even got, I don’t know how she got it, but she’s now got a cinema ticket to get in the cinema.
 
Okay.
 
Karen' Yep.
 
Robert' If she goes, is it the carer?
 
Karen' Yeah, the carer gets in free to the cinema.
 
Robert' It’s something to do with the cinema association or the guild or whatever because they’re then showing that they’re complying with the disability act of 2010, which used to be like disability discrimination act isn’t it, but they’ve now enshrined it into all the other ones.
 
Karen' And then there’s also the trains. She gets.
 
Robert' She’s got disability on the trains.
 
Karen' A discount on trains.
 
Robert' But then Charlotte’s got.
 
Karen' But that’s pure luck we found that one because I was looking for ways of getting her a cheap travel card to go to college.
 
Robert' Because a student railcard, can’t use it or get discount.
 
Karen' Before nine o’clock in the morning.
 
Robert' So when do student’s go to college.
 
Karen' So pure luck.
 
Robert' At nine o’clock in the morning. So it’s pretty pointless isn’t it?
 
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