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Psoriasis (young people)

What makes for a supportive doctor/nurse when you have psoriasis?

When a person gets on well with their doctor or nurse and feels there is progress being made with their skin, frequent appointments were reassuring. Zara says her dermatology doctors and nurses are “lovely” and “couldn’t have been more helpful”. Steven thinks “rapport” between doctors and their patients is important, especially if treatment (such as phototherapy) is “life changingly intensive”. Having seen different medical professionals meant some people could compare them.
 

Megan would like to be a nurse – something which is inspired by the positive experience she’s had with her dermatology nurses.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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What about a job in the future, do you think your psoriasis might affect any future jobs you'd like to do?

I really hope that it doesn’t affect what I want to do in the future. But, as I want to be a nurse, like a play nurse, because of obviously my story of psoriasis I kind of learned to know most of the nurses there, so I kind of like, they inspired me to be like a nurse when I'm older, and that’s what I want to do. And I think – I don’t think it would affect that because of like I'd be more worried about other children, and making them happy.

Yeah. Could you say a bit more about the nurses, and how sort of meeting them and getting to know them has sort of inspired to want to do something like that?

I've met loads of nurses over like the period of my nine years, and they all like made me feel really special and happy. And it’d just be some of the comments they'd say to me sometimes like, I'd be walking for a blood test, and cos I didn’t like them I'd get myself really worked up, especially when I was like nine. And they'd always used to put in little comments that would make me smile.

Or when I was having blood tests they'd play with me, and like make me happier, and like that’s kind of inspired me because they made me happy, and I want to make other children happy, so that they feel what I felt when I was at the hospital. 
 
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Louie says his dermatologist is understanding about the ways psoriasis affects him.

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Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I know she’s very good at her job, Dr [dermatology doctor’s name] she’s very, very nice lady and she’s very empathetic and she’s does really know what you’re going through because obviously she’s seen it a lot of times before and she’s very good with trying to help you, specifically for me. For example my swimming, I know I told her when I first went in there that I used to swim and etcetera and she said, “My goal is to get you back swimming again,” and at the moment I’m already swimming again so she was very happy with stuff like that. And she remembered that cos I went back couple of weeks ago and I told her that I was swimming and she was over the moon that I was swimming again and obviously that made me happy and obviously she felt some sort of happiness from it, I don’t know how much but she did seem rather joyful that I could swim again comfortably and. I don’t know if she does specialise in children but she’s very good with children, adults, everyone. 
 

Russell has had two main flare-ups and saw different GPs for each. Although they had different ‘bedside manners’, both diagnosed it as psoriasis.

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Age at interview: 20
Sex: Male
Age at diagnosis: 19
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One of them was, I can’t remember which time round it was but one of them was very, very business-like about it, it was the first time. ‘Cos I went, I went in there thinking I need to explain every detail, everything about the timeline and be very, very precise about it all and the doctor was more or less “Yeh it’s psoriasis” and I’d say a few more details, “No it’s psoriasis.” She was very, very business-like. And I sort of came out think oh that’s quicker, quicker than I expected. yeh I just felt they were quite shut-off about it whereas the next time I went round the doctor, they were both female but they were both so different, the second was much more kind of sat down, listened, engaged like listened to everything I had to say first and then kind of made a diagnosis whereas the first lady kind of cut me off when she knew what it was. so they were two quite different experiences, I’m not saying I came out the first one crying or anything but I did think oh that’s sounded business-like for a doctor.
However, not everyone had positive experiences with all their medical professionals.
 
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Carys tried a body scrub to help reduce skin flaking and itchiness. The dermatology nurse she told about this was dismissive.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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So my friend worked at Lush and I read in a magazine that somebody with psoriasis had used something called Angels On Bare Skin, I think. And I was like, I read it and it said, “It worked wonders for my psoriasis,” and I was grasping at straws by this point. So, I was like, “Oh, I’ll try that.” And I mean it, I got that and at that, that did actually help it. It was just like a natural like body scrub but it meant I could almost itch without causing any damage. So, and you could use it on a daily basis. So that was quite, quite a good one and it, like I say, cos it’s all natural and it has things in to help calm the skin down. It did, I found it helped. And I, when I told the dermatology nurse this, she just rolled her eyes at me and I was like, “Well you asked me what I’d used.” I said, “And I’ve been waiting for months.” I said, “I was grasping at straws by this point.” But I felt like it helped to, I didn’t like to replace my prescribed ones, but it, I added it in. So, like I say, I saw like that it worked and I have to agree I think for symptom relief it did, it did help. Like I say, it was like being able to itch without itching. 

Why do you think that the dermatology nurse had that reaction of rolling her eyes?

[Intake of breath] Probably cos she hears it all the time about, “Oh I used this and it worked wonders.” And I don’t and I never once said I think it was a treatment. I used it as symptom relief and I was fully aware that’s what I was using it for. And I think sometimes people are set in their ways and that in this, in that profession you think it should be prescribed and it should be you should follow, you know, prescribed medicines and things like that. But, she probably just thought ‘oh, you’ve been wasting your money’ or you know, ‘nothing’s gonna get rid of it.’ But like I say, I never used it to get rid of it. I used it as symptom relief and I told her that and I was like, “Well, if it helps it helps. I’m not-,” and like and I said to her I said, “And at the end of day, even if it was psychosomatic and all in me head, if it gave me symptom relief it gave me symptom relief.” 
 
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Sofia encourages dermatology doctors to think about extra things they may need to do to support young people with psoriasis.

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Age at interview: 16
Sex: Female
Age at diagnosis: 6
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I think as the doctors work with mainly older patients they should be more caring about the younger patients, especially cos they don’t have any knowledge about it. They should like take more time with… discussing the treatments with them and making sure they understand. Because when they were giving me the treatments, I didn’t understand anything, but my parents did. “They should try and explain in a way that a small child will understand and give the most effective treatments.”

Before I was too young to understand like what the doctors were really doing. But now I do understand, so I would like talk to them about it and like ask them questions. And this one that I’m meeting is just generally nicer. She’s a lot more caring as well. “I remember the previous doctor would just want to get rid of us and were unpleasant.”
 
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Steven remembers a time when a dermatologist didn’t even look up from the computer, let alone examine his skin.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Then had another kind of flare up and started using cream for my arm when the other arm popped up. And then, followed by legs and back and sides. So, I was pretty covered. I did get told what percentage I was, but I can’t remember, but it was quite high. It was like, 30% which I think was quite, I can’t remember, exactly. Which is when they decided to put me through for phototherapy. Which was the funniest referral ever, because I sat down at the kind of like doctor and she didn't even look at me. The dermatologist in the hospital and she went, “After what you said, I’ll put you forward for phototherapy.” I was like, “Okay”, like that’s quite-, went and saw the nurse. She referred me straight to the nurse and we got quite a really good nurse-led clinic as well that runs alongside the doctors who kind of like stripped me down [laughs] to everything everywhere, kind of looked at what was going on, asked me all the questions. She went, “Well actually, it was a really good judgement by the doctor, because you are like more than eligible. Come with me, we’ll get you started now.” So I went from like going to the hospital just to see like what cream I could get to like complete full on like, ‘let’s have treatment three times a week’, sort of thing. Which was quite good. 

I think the doctor that didn't even look at anything, that surprised me. And someone said, “Oh, maybe she knows from what you were saying”. I was like, “Yeah, but – “I’ve gone and I’ve waited for like an hour after my appointment time, because the clinic’s running late. Like it would have been nice if you’d just even like rolled up my arms, rolled up my legs, had a glance down and been like, “You’ve got psoriasis”. Like I knew that. But the fact that you’ve looked is just something. The fact that I went next door and the nurse then like went through everything. It was a bit more like reassuring, I was like ‘arr, okay’. But the fact the doctor didn't even look and went, “Some more cream and go for light therapy”. I was like, ‘okay’. 
As well as medical information, doctors can also give advice on the everyday aspects of having psoriasis. Lucy’s dermatologist recommended an emollient for shaving her legs which would be better for her psoriasis than shaving foam. Megan asked her doctor whether it would affect her psoriasis if she were to get her belly button pierced. Hyperpigmentation and scarring is something that Sofia and Hannah have talked to their dermatologists about. Some people pointed out that doctors could learn from their patients too.
 
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Hannah helped educate her dermatologist about online psoriasis forums.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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I talk a lot about the forum with my dermatologist who was quite interested to know because he'd never read about them and he said like, “I've had a few patients who said they they've looked at stuff online,” but doctors always tend to view looking at things online like it's a negative thing. Even though I felt like it really, really helped me. And I just think it's important to be informed. Like it isn't, it's not that the dermatologist is ever wrong, but it's just that there is more than one option, especially with skin conditions where there is so many different medications.

My one dermatologist is the only person I've actually mentioned the forums to but it was sort of a team in the room, and they were all kind of quite interested, they were like, “Oh yeah you know we've never really seen them before, but we've heard about them, patients have spoken about them.” And they were just kind of baffled as to why I'd really decided on Stelara and not any others first. And I just sort of explained, you know, people've had good experiences. I know the issue with it is that there is no long-term research cos it hasn't been around that long but it's really similar to other biologics. 
Other things weren’t talked about with medical doctors though. Damini’s tried herbal medicine but hasn’t talked to her GP about it as she prefers to keep them “separate”. Lucy was nervous at first about talking about psoriasis on intimate body parts but is glad she did to get the treatments she needed.
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