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.

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.

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.

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.

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.

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.

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.