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Psoriasis (young people)

Repeat visits to medical professionals for psoriasis

Everyone we talked to had seen doctors about psoriasis more than once, including getting a diagnosis. People didn’t always see the same doctor, sometimes because they had moved (such as going to university), chose not to or their GP was unavailable. Louie felt he had been “bounced around to all different GPs” but, since being referred, likes seeing the same dermatologist each time. A few continued to visit the same doctor throughout – Damini travels home from her university city to see her “family doctor [who] knows me better” than a new GP would.

Many people had been referred to dermatology at some point. Some hadn’t known at first that they could see a dermatologist, didn’t want to go onto “harsher” treatments yet or their GP refused to refer them. Adam remembers a time when his GP said his psoriasis wasn’t considered severe enough for a dermatology referral. Carys, whose psoriasis was severe when she was finally diagnosed, wishes she had been “a bit more pushy” with her GP about getting a dermatology appointment sooner.
 

Simon hopes to see a dermatologist in the future but doesn’t know what to expect.

Simon hopes to see a dermatologist in the future but doesn’t know what to expect.

Age at interview: 22
Sex: Male
Age at diagnosis: 17
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I’m not sure entirely what I’ll get [sighs]. The GP mainly said he’ll try and set up an appointment for me to see a dermatologist locally. And I would imagine what, going through it, what we’ll end up discussing are the effects of psoriasis and how, and the different methods that can be taken in order to help treat the psoriasis. 

Yeah. Is that something that you there are other treatments that your GP can’t prescribe you that you hope the dermatologist might?

I have had heard things through the grapevine through friends that you can, which is a steroids, and you inject them straight into the psoriasis and it’s supposed to clear it right up. Now, steroids are a big part of psoriasis treatment. Like, for example, Dovabet and Betnovate, they both have  quite a few steroids which means that essentially you can only put them in very certain parts of the skin. Otherwise what happens is that skin will start to thin out. So it means that you have to be very careful about what you’re applying, and where you’re applying it, even if it looks like that it’s working. 
 

Hannah was able to choose which dermatology department she could be referred to. She researched this and chose one at a medical teaching hospital.

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Hannah was able to choose which dermatology department she could be referred to. She researched this and chose one at a medical teaching hospital.

Age at interview: 24
Sex: Female
Age at diagnosis: 16
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The GP just referred me, but I picked where I wanted to be referred to. So I basically said, “I don't want to be referred anywhere, like to a local hospital, I want to be referred to a bigger kind of teaching hospital where there would be a psoriasis team.”

That's really good that you had that.

Yeah, yeah. And I think my mum sort of had to push me to do that because like it is better to go somewhere where there is a team. And also, it’s interesting to go somewhere where there is research, medical research being done. So like I’m involved in research at the moment which is looking more into like different kind of treatments. So whenever I go to the hospital for my normal regular check-ups, I also have extra tests done which help them. And it's good because I guess you just feel like you are part of the process of trying to like help discover something that really works. 

I'm in a teaching hospital where they've got a big psoriasis department where they’re constantly like teaching new people. So I tend to often have like five or six people see me at once. All keep coming in to the room and like, like will check over me like multiple times, so I'm quite used to that. But I have found it like, you know, really positive, that the hospital that I'm at is like has a, you know, really, like a lot of psoriasis research going on and people really interested in like my experience with different medications. And yeah I've found it, I've like found it a really positive experience with the nurses and doctors.
Those who were referred found there can be a long waiting time. Louie was told to expect to wait six weeks but it ended up being four months.
 

Lucy’s parents initially paid for her to see a dermatologist privately.

Lucy’s parents initially paid for her to see a dermatologist privately.

Age at interview: 24
Sex: Female
Age at diagnosis: 11
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When I was first diagnosed there was a very long waiting time for it. For the NHS appointment. And so, my mam and dad decided to get me an appointment privately, because that meant I could be referred within like two weeks. I’d already waited a long time, cos I’d been back and forth to the GP. And mam and dad must have spent so much money those first few years, because we had like private appointments. And we don’t have private insurance or anything like that. It was just like the private appointments, so they were very expensive. But I suppose that’s a testament to how much they cared and how much they wanted me to get my treatment straight away. And I really, really appreciate them doing that. But it’s difficult to keep up with a long term condition like that – you can’t. Unless you can afford it, you can’t have, you know, private appointments all the time. When I was first diagnosed, they did that cos they wanted to get the treatments going. And so, yeah, sometimes the waiting times can be frustrating. It’s often three months waiting time, I think; sometimes longer. And it’s frustrating, cos I’ll go to the GP, cos my skin’s really bad and they’ll say, “Yeah, I’ll refer you,” but then it’ll be another four months. 

So, like that is a frustrating aspect of it. But then again, like I say, I understand how busy dermatologists are and the health care system is. And so I’m not sort of angry at the wait. 
 

Occupational Health at Carys’ workplace helped her see a dermatologist quicker, as her psoriasis was impacting on her job as a nurse.

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Occupational Health at Carys’ workplace helped her see a dermatologist quicker, as her psoriasis was impacting on her job as a nurse.

Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I was referred to dermatology at the hospital and I was seen within a few weeks, so the process was a lot quicker going through Occupational Health which surprised me, actually. Didn’t expect it to [laughs].

Do you know how long you would have had to have waited otherwise to see a dermatologist?

I think my appointment probably came through about six weeks after the original appointment in the community with dermatologists. Cos they, yeah, they said it wouldn’t be till the Christmas and the New Year or actually yeah, cos I saw on Facebook, well you know, you ‘go back in time’ thing. And it said-, I’d put a status on saying that I needed phototherapy but that I wouldn’t get it till the New Year and that was this week, so it was probably a good six weeks that I was probably waiting for the appointment. And I’d got the letter asking me to go when I, the day after I’d had my first session of phototherapy at the hospital so it was quite a wait, so I think it’s one of those things that’s probably in quite high demand but not a lot of people can do it.
Most people went to a general dermatology clinic, but some had been to a clinic specially run for children and young people (paediatric dermatology). Zara now attends a “teenage clinic which means that I only have to leave school about ten minutes earlier” and so she doesn’t miss out on classes as much.
 

Ella will soon be treated under adult dermatology and thinks this will mean being more independent.

Ella will soon be treated under adult dermatology and thinks this will mean being more independent.

Age at interview: 16
Sex: Female
Age at diagnosis: 3
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Is it at 18 that you'll probably be referred onto the adult dermatologist?

Yeah.

Yeah. Have they sort of talked about what the differenced might be with adult dermatology?

Not really because whenever I go it's with my parents, and because I've had it from such an early age, they’ve always dealt with the creams and the prescriptions and the treatment and everything like that. And I've just like been there as the person who needs the help with it. So I think I do really need to get-, start getting into like knowing more about it myself and like knowing what my treatments are and like maybe even going to the appointments by myself to-, cos otherwise it will just be my mum talking to the dermatologist rather than actually me and my experience talking-, talking to him. 
Seeing doctors and having treatments was an ongoing part of having psoriasis for most people we talked to. Even if a treatment was successful, some still saw a dermatologist every few weeks or months as they knew it might return at any time. Simon highlighted that psoriasis is a chronic condition, meaning it’s likely to come and go over time. Zara sees her dermatologist every 3-4 months “just to discuss where we are and what option [of treatment] we’re going to look at next”. Phototherapy treatment can be demanding because it usually involves attending hospital several times a week for several weeks. Some treatments, like methotrexate and biological injections, require going for frequent blood tests. People mentioned that it can be frustrating going back to the doctors and trying treatments all the time, as well as:
  • expensive (prescriptions costs, private medical care, travel costs)
  • time-consuming and require time off school, university or work for appointments. Lucy had to take time off from her job for a dermatology appointment when her psoriasis was severe, but found her boss wasn’t very understanding.
 

Zara felt fed up having to spend time in hospitals and seeing different doctors without her psoriasis improving.

Zara felt fed up having to spend time in hospitals and seeing different doctors without her psoriasis improving.

Age at interview: 16
Sex: Female
Age at diagnosis: 2
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When I was younger I, well I suppose when I was younger and older it felt kind of awkward - I suppose that I didn’t, when I was younger I didn’t totally understand why they were taking photos and why there were so many people, but I hadn’t had a great experience of hospitals so. When I was older I went to we used to get called in for like there used to be a regional or whatever and people come from all different hospitals and then they’d just people there would take photos and ask some questions that was, that was quite stressful and it was also quite annoying because I used to waste a lot of time at hospitals and in the back of my mind I always knew that whatever they came up with wasn’t going to change anything. But yeh.

Why do you think you thought that it wouldn’t change anything?

Cos you know when I started going to these, you know, I’d been there, I went to them about 12 to 14 years old and nothing had changed yet and I didn’t see why a doctor from Newcastle was going to come up from any, come up with anything different from the doctor from Oxford so. 
 

It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.

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It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.

Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I realised it on my scalp, on my head and the doctor said it was some sort of fungal disease which is obviously- we know now it’s not. And they gave me some creams for that and, yeah, I did go to the doctors and they just said it was that and it turned away as something else.

How long did it take for somebody to correctly diagnose it as psoriasis?

Had it for about-, I had psoriasis before someone correctly diagnosed me for about six and a half months, but I had difficulty going to the doctors cos I was young and my mother is a full time-, she works full time so it’s difficult to get doctor hours that correlate with my mums working hours. 

So it was very difficult to go to the doctors unless it really got serious and that’s-, by the time it gets too serious it gets pr-, it gets to the point where it’s not easily as treatable because of the severity of it and so it was about six or seven months.

Did the doctors give you anything during that time for what they thought was the fungal infection?

They gave me a fungal shampoo of which didn’t seem to work because obviously it was doing the wrong thing it wasn’t close to be treating me and then they gave me just like a little steroid cream for my face but that didn’t work either. 

And that didn’t work either so obviously I went back at a later date.
 

Steven likes being able to try different emollients (moisturisers) to see which work for him.

Steven likes being able to try different emollients (moisturisers) to see which work for him.

Age at interview: 22
Sex: Male
Age at diagnosis: 14
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So a friend of mine raves over the Aveeno cream, which is like oat-y. And I remembered like when I first started, in fact it’s just come back to me, when I first started that oats were a thing and someone was like, “Put oats in tights and like put them, wrap them round”. And I was like, “Really?” I did it, it didn't help. And this friend raved over the Aveeno cream. She was like, “Oh, I’ll bring it when I see you, you can try it.” I was like, “This is bloody awful,” like, y’know. It’s not doing it for me. And funnily, at the hospital last week I got given a load of little like test pots. And I think if you can get hold of them, it’s really good. Our, my dermatology department are fantastic. They’ll let you, photo therapy nurses will let you just, they’ve got a cupboard and it’s like, “Help yourself to the cupboard. Try what you like.” And that’s quite good, cos you can then try something. As it happened, a pot of the Aveeno stuff came in. It was a little one, came in this thing. And I actually quite liked it on my hands. And I was like, “Okay, well maybe we won’t use it on all of me, but as a hand thing – we’ll bear it in mind.”

I think also, for me, a lot of it is what comes in like a handy sized packet that you can hide somewhere. Got one in the car. 
Some people didn’t see a doctor frequently but would go if their psoriasis came back again. Damini’s flare-ups happen so quickly that she often doesn’t have time to make a GP appointment before it ‘takes over’.
 

Russell says he manages his psoriasis well with steroid creams and avoiding triggers, so he doesn’t go to the GP often.

Russell says he manages his psoriasis well with steroid creams and avoiding triggers, so he doesn’t go to the GP often.

Age at interview: 20
Sex: Male
Age at diagnosis: 19
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‘Cos the first time it was more like we think it’s psoriasis, we think you should try this if it doesn’t work come back again and we’ll try something else. And then the second time I went back, in my head thinking I know what I want, I know what I need and the doctor more or less agreed, I didn’t sort of say “I need this cream” but I explained that it had worked before and they said well if it worked before it’s probably going to work again but if it doesn’t, then we’ll come back. And yeh that’s basically where I am at the moment so it has worked so I haven’t gone back. So in terms of other treatments or therapies I’ve not tried any and I don’t really know any others but it’s been treated as a kind of as and when you need it. 
 

Louis had a one-off period of ‘post-viral psoriasis’ but his doctors didn’t know at the time how long it would last.

Louis had a one-off period of ‘post-viral psoriasis’ but his doctors didn’t know at the time how long it would last.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Yeah, so it was- [sigh] my dermatologist effectively told me that he didn't know when it would go away. So he said, "I’ve given you all of these things to do, you're doing all the right things; however the nature of psoriasis is that I just don't know when it'll go away. So, all you can do is just keep doing what you're doing, and hope for the best." Which isn't the best sort of prognosis that you can be given. He said, "It may last-, it may last days, it may last weeks, it may last months, it may not go away. Hopefully it'll calm down, but you might have-, you might have this for pretty much indefinitely." Which was quite a scary thing to hear because at the time it was really bad. And if it had calmed down and stayed, that would have been okay, but if it had stayed as bad as it was and not really gone away, that would’ve-, that was quite scary, yeah. I didn't-, I didn't particularly want that to happen. So I think in hindsight I was relatively lucky, because I was given a sort of ‘hopefully it'll go down in the next few months’ prognosis. And it went away probably within a few weeks. Other than odd bits on my arms and my knees, everything was sort of calmed down relatively quickly. I say relatively, it was about a month, yeah. A month, six weeks.
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