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Psoriasis (young people)

What help can I get from medical professionals for psoriasis?

Of the people we interviewed who had medical help with psoriasis, the main sources were:
  • General Practitioners (GPs)
  • Dermatology consultants and nurses (healthcare professionals specialising in skin)
  • Pharmacists
Overall, people said they had good experiences seeing health professionals about their psoriasis (see also the section on ‘What makes for a supportive doctor/nurse when you have psoriasis?’). Most people had seen both GPs and dermatologists about their psoriasis, but a few had only seen GPs. The difference between GPs and dermatologists for many was important: they saw dermatologists as having more knowledge about psoriasis and able to prescribe a wider range of treatments. Some felt dermatologists were more open to discussing different treatment options. Lucy thought it was good that her GP recognised “he doesn’t know enough to help me enough” and so recently referred her back to dermatology. 

Those who saw a dermatologist sometimes still saw GPs for repeat prescriptions of steroid cream or to get antibiotics for infections. Pharmacists sometimes helped by recommending over-the-counter things that don’t need a prescription like medicated/tar-based shampoos for scalp psoriasis.
 

Abbie talks about the medical help she had when she was younger.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Could I ask what the first appointment with the GP about psoriasis was like?

I can't really remember it because it was so long ago but obviously Mum took me in and they just give me steroid creams. I think it started off with the same that my dad had, just cos obviously he'd used it for so many years; then just over time that didn’t work so I was going back and forwards being given different steroid creams just to try until I got referred to go to a dermatologist, and that was mostly because of my scalp and because of the state that it was in where I had to go and have special treatment a few times a month where I'd sit there and they'd put in the cream. I'd have to sit there for a few hours while it settled in, then they'd have to sit and just scrape out all the loose bits. 
 

Jack had mixed experiences with GPs but is pleased his current one has a special interest in skin.

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Age at interview: 24
Sex: Male
Age at diagnosis: 20
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Altogether about my psoriasis I think I’ve seen maybe six or seven doctors, different doctors. But this doctor’s is a special-, is obviously a specialist who knows what he’s talking about and in a way it was quite reassuring to go in and he basically just said, “Right, you know, the things you’ve been prescribed just wouldn’t do anything. I’m not, I’m not surprised.” You know, he just said, “Right, I give you-, I’ve got the Protopic,” which he just said, you know, “This, this will do it. This was, this will, you know, help control it.” And Dovobet as well, I’ve got. But it was reassuring just being with someone who obviously sort of really knows what they’re talking about. I think because of the side-effects or possible side-effects and strength of steroid cream, I think previous doctors probably were a bit cautious about, about prescribing them, especially-. So one of the first doctors, I’ve seen so many doctors [laughs] over the last few years, but one of the first doctors I saw when I was back at home was I believe a junior doctor, so I think, I think she was possibly even, even younger than me when I saw her, so is, it was quite understandable actually that she didn’t wanna prescribe anything strong. And I think she even, she looked-, she had to look it up in some sort of handbook about, you know, what creams she could prescribe and that kind of thing. But yeah, I guess I probably would’ve appreciated seeing someone a bit earlier but I think I’m not a very forceful person so I probably, yeah, I’m not the kind of person to say, “Can I see a dermatologist please?” Even though it was quite a struggle. 
 
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Adam became frustrated with seeing different GPs about his psoriasis.

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Age at interview: 24
Sex: Male
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When you have an illness or, or a disease or, or something that you live with, you’re the expert on it almost and, especially if you go see a GP. If you go see a dermatologist they do probably know more than you. But if you go see a GP they’ll know like snippets of it. And you go and you know this, this and this. And so I, I always went in and basically told them what I needed and they often listened to me. So, but I’d go in and then sometimes they would just kind of want to see what stage, how bad my psoriasis looked at the moment. So, and I often wouldn’t go back to the GP until I’d run out of treatment. And then, even then I’d be like, “Oh, fuck’s sake.” And then, and then I’d then have broke out and I’d often get an emergency appointment with a new, it would be a new GP because obviously I’d just get an appointment with whoever’s there. So they’d obviously want to see what, what was going on. So it would just be like a simple, “just lift your top up”. Because I would tell them where it is on my body. They would ask me where, where it is mainly. And I would say, “It’s mainly on my front and my back.” And then I said I had bits on my legs. So they would often just ask me to lift my top up and kind of like, and then I would show them. And then “Okay, okay, okay. Have you, have what you want” and stuff like that. 
Young people visited medical professionals for: What happens in doctor appointments?

Doctors usually examined the person’s skin. Most people said they were okay with this because they saw it as part of the doctor’s job. Skin examinations were painful for Zara though as the doctors would spread her toes apart to see the psoriasis. Lucy had a biopsy (a small skin sample) to confirm the diagnosis of psoriasis.

Many people talked about how treatment decisions were made. This included choosing a treatment, the dosage and the best way of using it. Some trusted their doctors to make decisions for them, but others preferred to have more of a role.
 

Louis thinks it’s important that doctors recognise that they are examining a person and not ‘just’ psoriasis.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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It was quite sort of, "Take your shirt off." Microscope out. "Let's have a look." Poke it, prod it, see if it changes colour, that sort of thing. When I had my first consultation, there was another medical student in the room. And the doctor says, "Oh come over here, have a look at this, have a poke around." And I was sort of- I was literally just sort of sitting there, just while they- they had a look at it. And [sigh] it's, it's a really- it's a strange experience to just- to just walk in and just sort of be this rash. So I think for anyone who's dealing-, who's coming into contact with someone who's got a skin condition, whether they're a GP or whether they're a friend, whether they're a stranger - try to think that this person isn't just a rash or a boil or a whatever. They are a person who happens to have this quite inconvenient problem with their skin. And they'd much rather you treated them as the person they are than just a skin condition. 
 

Hannah researched treatment options and asked her dermatologist to prescribe biological injections.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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And if you've, sometimes it’s good to just go with your gut feeling – if it doesn't work or you have side-effects, then you move onto another thing. But this has really worked for me and I'm really pleased that I decided to go on this particular one. And I went on it because the forums-, like they seem to have the most positive feedback on the forums. And I just kind, you to learn to trust that when you see so many people giving similar feedback and you tend to trust people with the condition more sometimes than your own dermatologist cos you just feel like they know what it feels like to go through so many things and have it not work. And they are just following the protocol of, “We'll try this first, then this, then this, then this.” So that's why I kind of sort of trusted them over my dermatologist and went with this. And they were happy to prescribe this. It would have been somewhere along the line, I would've, had it had the thing they wanted me to go on not worked. So they were fine with it, but I think it was unusual to kind of decide yourselves this is what you want.

So it was a treatment the dermatologist would've got to at some point?

Yeah it was definitely an option, it wasn't like something that they didn't have in the hospital and nobody else was on it or anything. They just tend to always starts with some-, a certain one and then go onto another. And I think because the injections, the injections are quite expensive I imagine the protocol is that you start with the least expensive and then only get to the most expensive if you need to. But that's obviously the wonderful thing about the NHS, is that you-, we don’t really have to worry about that situation. I just thought ‘this is what I really want, so I'm gonna push for it’ and, you know, like they agreed in the end, so that's fine. 
 

Steven’s dermatology nurse gives him detailed instructions about using dithranol topical treatments which are different to those in the leaflet.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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So, how do you go from the gradations of the medications that you’ve brought in, like how’s the timing of them work?

So these ones I have been to the hospital twice last week. Kind of every, twice a week, beginning of the week just to check in with the nurse and she just checks that my skin’s okay and it isn’t blistering or anything like that, cos that’s quite a common side effect. And then she says, “Right, go up to the next one”. I have to test it on a really small patch of psoriasis that I’ve got. And then when that’s, you kind of test one with the next dose and carry on with the same dose. And then when you, like the next day, if everything is okay, you go up to the next dose. So it’s kind of controlled under her, there are labels on it with like dates and stuff. She said, “Just kind of ignore that and like whatever I say, do”. You have to be careful, because I mean she said me, there’s a little leaflet I’ve got and she crossed out every time it says half an hour and left it on for an hour. Because depending where you get different treatment from depends on what they can, how long they can tell you to have it. And what happened with me with the doctor, told me, GP, said “Use this for half an hour.” Went to the hospital and she said, “Oh, sleep with that in overnight.” And you just have to kind like make sure that the doctor kind of y’know, has got, can tell you that. 

I think if you’ve got treatment that you find is working, but it’s not kind of like working-, you’ve kind of got a bit stable with it – it might be worthwhile asking the doctor, “Is that the longest you can leave it on for? Can you do something else with it?” Because if that’s working, I did have that with one of them a few years ago, it was working, but it wasn’t quite clearing it. I said, “Is that all I can do?” and she went, “Oh, you could wrap yourself up in cling film,” glamorous, really glamorous. Wrap yourself in cling film for like an hour and keep that in and kind of like makes it more- working. And then wash it off. And then that did kind of really help me. So it’s worth, if you’ve got something that you know works kind of like asking if there’s any other way you can do it. 
Not everyone was happy with the treatment choices they were offered, but didn’t know of alternatives or feel confident speaking up. Simon thinks his GP gave him “the wrong kind of medication [tar-based shampoo]” for his scalp psoriasis at the start which wasn’t enough – he thinks a topical steroid would have “nipped [it] in the bud”.
 

Jack wishes he had played a bigger role in choosing treatments and going back for another if it wasn’t working.

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Age at interview: 24
Sex: Male
Age at diagnosis: 20
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I think it probably goes back to just sort of taking every doctor’s sort of word as, as it is so I just ended having so many doctor’s appointments and I’m quite accepting of like if a doctors says something, I’ll be like, you know, “That’s, that’s brilliant,” but I probably should’ve taken more on board of what I’ve read, seen someone who knows what they’re talking about and said, “This is what I think,” you know, rather than going in and saying, you know, “So, I’ve got this psoriasis, help me doctor,” sort of thing where the doctor often either don’t-, aren’t 100 percent sure what they’re doing or prescribing me things that don’t really work. I’m also the kind of person that I don’t necessarily feel not comfortable doing it but I wouldn’t book a doctor’s appointment then like a week later. You know, unless I was asked to come back. So even though, even when sometimes I had a cream that didn’t work, I still ended up waiting six months or whatever before coming back whereas it’s best to just attack it straight on. 
 
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Adam has sometimes argued with GPs about psoriasis treatments.

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Age at interview: 24
Sex: Male
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Usually they do, so usually they do listen to what I have to say. They might go and double-check it or something like that. They, what was it? Like they would, they would tell you to steer away from ointments. And I would often have to fight and, I’d get their reasoning behind it. I’d get that kind of the, “Steroids, and it’s not good to pump your body with like, or apply all of these things to your body all the time.” So they do, they used to try and kind of like move me away to some of the softer treatments, especially if it like, if it cleared up a bit. And then I would go to, to the GP. I would kind of ask for like what I’d been used to and then they’d ask to see my skin. And then they would be like, “I think we should take it down a couple of notches because your skin’s looking all right at the moment.” And I would say, “No.” Because I’m like, “It might look all right at the moment. But when it’s gonna be bad I don’t want some shit kind of like thing that’s not gonna work. I want the strong stuff.” And I would have to almost fight them for it. 

And I do get their reasoning behind it. And I think that’s when you have to like, there’s the, obviously for your body I get what they’re saying in terms of, “Okay, maybe you should try and, kind of like something weaker and see how that goes.” But in terms of my mind, my mentality and how it’s making me feel, I don’t care. I want the stuff that’s stronger. So, and they often do kind of bow to that cos they see that’s, kind of like you’re quite desperate.

I remember this one time actually, again I actually went GP’s. And there’s nothing against them or anything like that. But I remember they, so Dermovate, you’ve got like the cream and you’ve got the ointment. And the ointment works better. The cream’s better in terms of like, I don’t know why the cream’s better, for some things. But I know the ointment works faster. And I remember I kept asking for ointment m-, because it said it worked faster. And the GP was like, “No, the cream works faster.” And, and I was like, “No, the ointment does.” And, and it wasn’t until I went back to see a dermatologist again because this doctor sh-, for some reason wasn’t giving me ointment. And I went to see, no, it wasn’t a dermatologist, I went to see someone else. And I was just like, and they were like “Ah, do you not want the ointment? Cos it’s faster.” And I was like, “I knew it, I knew it was faster” and stuff like that. So, and then since then I’ve been back on the ointment. 
 

Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.

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Age at interview: 16
Sex: Female
Age at diagnosis: 3
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I think one of the things that I've always had is the doctors going, "Right, here's your creams and you have to put them on twice a day, every day, you have to use these certain shampoos, these certain soaps and everything like that, and you have to use them." And I think while obviously they know exactly what they're talking about, it can be difficult to- to do exactly what they say, like I probably should be putting my creams on twice a day, every day, but I only put it on once a day because I literally don’t have the time in the morning to put them on in the morning, and if I did put them on in the morning then my skin would not feel very nice – like it would feel greasy especially on the places that I put it, especially on my face. If I was going to try and put my cream on and then put my make-up on, like I would have greasy skin for the rest of the day and that’s not something that I really want to deal with. So, I think doctors, while they do know what they're talking about, they should think about how the treatments are going to affect the patient's day-to-day life. Like some people don’t have the time to- to do like what the doctors have told them, twice-, if they have to do it twice a day – they don’t have time to do that.
For those who had psoriasis most of their life, their parents had usually first taken them to see doctors. As they got older, they went more on their own but sometimes talked to family members about what had happened at appointments. Some people liked having someone with them at their medical consultations. Zara’s mum drives her to her dermatology appointments and sometimes sits in – she finds this helpful as “I always feel mum can explain it better”.
 

Lisa prefers if her parents aren’t at her medical appointment.

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Age at interview: 20
Sex: Female
Age at diagnosis: 11
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With your hospital appointments and your dermatology appointments would you tend to go to those with a parent?

No, normally I go by myself. My mum did come with me once, but I, I find it awkward to talk about it when they’re there, because they sort of butt in and it’s a bit really awkward, so I try and go alone. 

At what age do you think you started going to appointments on your own?

From about 16 cos I didn’t-, I don’t really like talking about problems if my parents are there because then they’ll be like, “Oh, you didn’t tell me that.” And I’d just be like ‘yeah, I didn’t want to tell you that’. So yeah. 

Were they okay about when you told them that you’d rather be on your own?

Yeah, they-, they were fine about it. 
 
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Megan’s sister briefly had a psoriasis flare-up and they went to dermatology appointments together.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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One of my other sisters got diagnosed with psoriasis, so me and her used to go together; we used to be like, wake up early and be like, "We've got the hospital today." But I felt better when she came, cos I like felt like I wasn’t on my own, it made me feel a bit like more secure. Like going on my own to the hospital, I got really scared. Like, loads of people would look at me when I was sat on the bus, and like I felt really self-conscious, but when my sister was there, me and her were just like, "Well, there's two of us, you can't really look at one of us weirdly," like. 

But hers went really quickly, she only had it for like a year so hers went really quickly, so then she stopped coming to the appointments with me. 

It's still easy to talk to her cos she kind of understands everything. So, we kind of like talk to each other and make sure everything's OK. And she's kind of like, I guess she's like my best friend; like I can talk to her about anything, so as soon as I come from the hospital, she'll be the first person that asks me. Like she'll walk in the door, and like it'll be the first thing she says. She won't say “Hi” or anything, it goes like, "How was the hospital?" and then like that makes me feel better that I know I can talk to her about it. 
Everyone we talked to had seen doctors about psoriasis more than once and for some repeat visits to medical professionals was part of ‘having psoriasis’. You can read more about this here.

Mental health support referrals

A couple of people had asked for professional help or a referral for mental health and self-esteem issues related to psoriasis. Many people felt doctors should be more aware of the emotional impacts of psoriasis and raise it in appointments. Adam and Damini think doctor appointments are usually too short to go into enough detail about the everyday experience of having psoriasis. 

Some people talked to their doctors or filled in questionnaires about how psoriasis affects them. Megan’s dermatology doctors and nurses ask her about how she’s “dealing with it” and try to make her feel better. Filling in a questionnaire wasn’t as helpful as some people wanted, as many didn’t get a chance to talk to their doctors about their answers. The questionnaire score was sometimes calculated with their PASI (Psoriasis Area Severity Index) score so doctors could consider the emotional impact with the severity of their psoriasis. People said it can feel dismissive being told that your psoriasis isn’t ‘that bad’ when it’s causing them lots of distress.
 

Lucy encourages doctors to take a “psycho-dermatological” approach to psoriasis.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I think it’s important to take an interest in the person. And I understand how busy doctors are. But it’s so helpful. It’s so, so helpful. And it puts the patient at ease. Just asking them about them, like “What’s your job?” or “What are you studying?” and “What are your interests?” It doesn’t take long. But it makes them feel that you care. And I understand that doctors have a job to do. But there has to be compassion there. And then, secondly, I think, bringing in the psychological aspect of the conditions. Cos in my experience there hasn’t been much advice or discussion from dermatologists or the medical profession about the psychological aspects of the condition, which, of which there are a lot. So I think by, by merging, you know, mental health and dermatology in some way that would really, really help young people deal, deal with their condition a lot better, cos it brings so many psychological issues and stuff. And if dermatologists addressed that more and GPs addressed that more, it would help a lot. 
 

Abbie says the survey questions aren’t always the ‘right’ ones to find out about the impact of psoriasis on her life.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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So, when I had to go and see the consultant you have to fill like a little questionnaire out, and it always says about –. But the thing being when they do these questionnaires but they relate it to the last month, or the last week, and some of these questions don’t actually relate to in the last week. Like, ‘has it ever affected what you're wearing?’ Well when I went and saw her it was in the winter. So no, it didn’t affect what I was wearing because I'm gonna wear long sleeves anyway, whereas if it was in the summer, yes it would because I wouldn’t wanna wear skirts; I wouldn’t wanna wear shorts. And it's just those things that they don’t really think about. Like when I did see her and she first went and told me that, "Oh OK, we need to try some steroid creams," I broke down in tears in front of her because I said, "No, I’ve tried this for the last ten years and nothing has worked." And it's even like she didn’t really relate to it and she's like, "Well your psoriasis isn't that bad, you - ," and I was just like, "You might have seen the worst cases, but to me this is really not helping me," and that did bring me down a lot when I first saw that consultant this year. 
 

Hannah completes questionnaires about emotional impacts of psoriasis at her dermatologist visits, but the results aren’t usually talked about.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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You mentioned about the surveys that you fill in, the questionnaires which they make into a score. Do your doctors then talk to you about that in the consultation?

Yeah so today I went to the hospital, so it's quite good timing cos it's sort of fresh in my mind. And yeah, so after they do the PASI score of how it-, often basically your psoriasis like severity index which is that, that kind of thing about how much of your body is covered, kind of tends to correlate with this survey they do on how it's effecting your life. So I had a score of like one today because it's hardly affecting my relation with people, what I wear and those things at the moment. You know, at its worst it could be up to like 20 or something. And they talk about it and they're like, “Oh it's good,” but I mean they only talk about it as much as, “Oh OK that's, it's bad,” or, “Oh, that's good.” I, they, they don't, I recall people being like, you know, “What should we do about that, because the score is very high?” It's more that just sort of for their records I feel-

OK

-they don't seem to massively be acting upon it.

OK. So it doesn't tend to open up a conversation with you about sort of elaborating on why you scored that score?

No, that hasn't really happened so much, I mean apart from the one time that I did go to counselling, but that's because I asked about going so before they had the chance to say, “Your score’s really bad,” you know, and talk about it I said, you know, “I'm feeling awful as my survey probably suggests and I'd like to see someone.” But, you know, if I hadn't said that they may well have, have spoken about counselling, but I don't really know. I definitely think that it should be like a two-pronged approach for young people with a skin conditions like psoriasis. They should be saying, you know, “Do you want to speak to someone?” And even if they don't want to do formal counselling, just to have the doctor ask a few questions – “How are you feeling? How's that made you feel?” and, you know, just getting them talking because it's something where it can feel really like, I don't know, insular – like you just don't want to talk to anyone. And you keep it all inside a lot of the time. 
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