Based on their experiences of having psoriasis, the young people we talked to had advice for health professionals. Sometimes these messages also applied to others, such as their family, friends, partners, school/teachers and university/lecturers, and work colleagues. Many highlighted the emotional impacts of psoriasis that can be overlooked if only the physical symptoms are focused on.
Key messages for health professionals treating young people with psoriasis were:
Some people also wanted information on lifestyle factors. Russell finds diet and a lack of sleep has a “big impact” on his skin, but weren’t mentioned by his doctors. Sofia says that doctors “should try and explain in a way that a small child will understand” rather than talking only to their parents or guardians.
Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.
Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.
Age at interview: 17
Sex: Female
Age at diagnosis: 14
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I remember thinking ‘I really don’t want this to be psoriasis because I know it’s never gonna go away.’ And I did feel a bit disheartened when they said, “This is psoriasis.” And they printed- out, on my first doctor’s appointment they printed out this massive leaflet and they said, “Do look at websites,” and it kind of-, they said it’s linked with heart diseases when you’re older. They didn’t tell me it’s linked with arthritis, they didn’t tell me it’s linked with depression, they didn’t really-, what was annoying is that we’ve kind of had to find out a lot for ourselves. They didn’t tell me the different types or- of psoriasis that there, or where I could like, they didn’t tell me where to look out for it in a way which is annoying because it’s kind of you’re finding out for yourself. So I think my main like annoying point is that I knew I could never get rid of it and it’s always going to be there and especially when I’m stressed, which is kind of handy knowing that like when my skin flares up I know I need to change something.
- be aware that the emotional and social impact of psoriasis on young people can be enormous
Let people know it is okay to talk about emotional distress and that support (like counselling) is available. Don’t rely on the young person to raise the topic. Ask the young person how psoriasis affects them, physically but also emotionally and in their daily lives. A few people had completed questionnaires about the emotional impact of psoriasis at their dermatology appointments. However, they were often disappointed that the results are never discussed with them as they would like more of a conversation about these with their doctors and nurses.
Lucy encourages doctors to take a “psycho-dermatological” approach to psoriasis.
Lucy encourages doctors to take a “psycho-dermatological” approach to psoriasis.
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.
Adam says the emotional impact of psoriasis outweighed the physical aspects for him.
Adam says the emotional impact of psoriasis outweighed the physical aspects for him.
Age at interview: 24
Sex: Male
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So for me the effect of psoriasis is purely, it’s purely emotional. So it’s not, I get no physical like, what’s the word for it? But I’m not inhibited physically or like I don’t get physical pain from psoriasis. I don’t get, like I’m not hurting or something, I can walk or something like that. So like things like psoriasis arthritis or things like plaque psoriasis that people are physically like in pain or they’re itching or they’re uncomfortable or they can’t walk or, or something like that and they’re in a wheelchair part of the time or can’t get upstairs. So like they’re like the real physical kind of impacts that psoriasis has on their life. Whereas for me with guttate psoriasis or the type I don’t know if it’s different for other people with guttate, but it’s purely emotional. So it’s stopped me from doing this, it’s stopped me from doing that. And it’s stopped me from kind of going into uni one day, it stopped me from sitting my exams. It’s stopped me from, it’s stopped me from going to work sometimes, all of those things. It’s stopped me from having relationships. That’s all purely emotional and I don’t think that’s kind of given enough consideration.
Hannah completes questionnaires about emotional impacts of psoriasis at her dermatologist visits, but the results aren’t usually talked about.
Hannah completes questionnaires about emotional impacts of psoriasis at her dermatologist visits, but the results aren’t usually talked about.
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.
- be friendly and respectful
Megan felt “inspired” by the medical professionals she had seen because they tried to cheer her up. Steven finds rapport and light humour help him feel comfortable with medical appointments. Hannah thinks the age of the patient should be “factored in” by medical professionals treating them. She says that psoriasis and treatments can add extra pressures on young people that many of their peers don’t have, such as worrying more about ill health and impact on socialising.
Louis thinks it’s important that doctors recognise that they are examining a person and not ‘just’ psoriasis.
Louis thinks it’s important that doctors recognise that they are examining a person and not ‘just’ psoriasis.
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.
- give people treatment choices
Don’t automatically re-prescribe the same thing if the person doesn’t find it’s helping or if they’re struggling with side effects. Simon feels it would have been easier to manage his psoriasis if he had been given a steroid topical treatment for his scalp sooner (rather than a medicated shampoo). Be careful when talking about changing to new treatments though, the uncertainty of whether the psoriasis might return or become more severe can be frightening. Aspects of treatments, such as the smell, feel and look of topical treatments should be considered as these can be off-putting and draw unwanted attention to the person with psoriasis. This was a key reason why some young people stopped using the treatments prescribed.
Jack wishes he had played a bigger role in choosing treatments and going back for another if it wasn’t working.
Jack wishes he had played a bigger role in choosing treatments and going back for another if it wasn’t working.
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.
Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.
Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.
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.
- talk to the young person about how much medical help they would like
Adam appreciated that his GP suggested seeing him weekly for a short appointment to keep an eye on his skin.
- listen to what the person with psoriasis has to say and be open to talking to them about things they’ve read online, heard from others or tried out for themselves
This includes over the counter/shop bought products and alternative therapies. Be careful not to come across as dismissive, but do talk to them about why another approach could work better.
Carys tried a body scrub to help reduce skin flaking and itchiness. The dermatology nurse she told about this was dismissive.
Carys tried a body scrub to help reduce skin flaking and itchiness. The dermatology nurse she told about this was dismissive.
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.”
- stay up-to-date with research and information about psoriasis, which you can share with the young person
Many people felt their GPs didn’t know much about psoriasis or, at least, that they didn’t share it with them in detail. For Carys, this meant a long and frustrating wait before she was diagnosed and phototherapy was the first treatment option.
Hannah encourages GPs to refer to dermatologists (if they are unsure about treating psoriasis) and counselling (if the person with psoriasis is struggling).
Hannah encourages GPs to refer to dermatologists (if they are unsure about treating psoriasis) and counselling (if the person with psoriasis is struggling).
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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To talk about counselling as an option and to make people realise, make their patients realise that it's completely normal to feel like depressed. And ask them how they are and how their skin makes them feel. I think that's being done a lot more in hospital. So I, every time I go in now I get a survey on how, similar questions to what you've asked, “How has it effected work and study and life in general?” And then that is made into a score and they look at that score every time I come in and see if it's improved. So that is happening a lot more. And I'd just advise them to, I don't-, I mean I would just also say don't have this sort of attitude that you know best because it's not a bad thing for a patient to have done their own research. And with something like psoriasis there is a chance that people will have, you know, really read up and looked online at stuff. And that's not necessarily a negative thing. I have found it, like previous experiences, not so much with dermatologists, but definitely with GPs where I've had to be like, “Look you know what I've done loads of research on this and it isn't your, it, you, you don't specialise in psoriasis, I really want to see someone who does. I don't want to like keep coming to see you.” And sometimes you have to be firm and say like, you know, “I deserve to see someone who, who specialises in this condition”, instead of like going to see the GP again and again and again.
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