Live in Manchester - understanding your experiences of using dermatology services

Posted Thu 11 Apr 2019 08.40 by ValerieBB

Hi my name is Val and I work for NHS Manchester Clinical Commissioning Group. We are reviewing our dermatology services and would like to better understand patient experiences of people affected by psoriasis. This review will affect people registered with a GP in Manchester. I am keen to listen to patient experiences and happy to use this forum to understand what has worked well and what we need to improve on. I can organise an informal coffee morning or meeting for people to share their experiences with commissioners. I can also be contacted directly by email val.bayliss-brideaux@nhs.net or by telephone on 0161 765 4168. Many thanks and I look forward to hearing from you, Val

Posted Sat 4 May 2019 09.35 by anotherone

You can certainly have mine. I was not born in the UK and recently lived for a period in Manchester, where I discussed with my GP about psoriasis. I am 41 years old and have psoriasis since I was 19. It originally started from the scalp, in following years flared a bit up on my back, but small patches. It cleared up a bit over the years, with periodically ups and downs. No particular reasons. I did not drink to an exaggeration neither I used to smoke. We could probably say, 2 glasses of wine a week. Now it's even less. Scared, in my early twenties, about this small but visually awful thing, I went to consult some doctors. The first one told was seborrheic dermatitis, and the next ones told it is psoriasis. All of them, prescribed creams based on cortisol. I remember dovobet. The effect of these creams, is basically useless. They clear up the patches. their effect cleans up for a full week or two, and then, even with maintenance hydrating creams, patches come back. From my experience, one month of cortison or bethamethasone, equals a week or two of clean skin, and 6-8 month of altered body functionality. My skin gets thinner and I recently had nose bleeding. At the age of 27, I started smoking, but really nothing changed. Psoriasis did not increase neither decreased. I use to smoke 20 cigarettes a day. I quit at the age of 38. Psorias worsen since then. So, am pretty sure, for as much unhealthy smoking is, definitely does NOT play any role in psoriasis. Or at least, not more than living in a city with air pollution such as Manchester. I used to scratch my scalp, thus causing more flakes to build up and skin looking more irritated, but nothing really exaggerate. I quit. It's a year now I quit this habit. Again, psoriasis did not get better at all. On the contrary, I am now at a point, I can wear anymore my usual clothing. I grew used to psoriasis, so decided to do nothing about it, and just accept it. At some point, on the pressure of my mother asking me "why don't you see a doctor", around I guess the age of 35, I decided to go back and talk with some doctors and some specialized universities. They prescribed me treatments, but not cures. Like they prescribed me initially creams, when I explicitly told them I did not want any cream based on cortisone, and then uv light therapy. Another useless cure attempts. During spring and summer, I use to push myself to go out and spend more time in the light. During summer, I went for a week by the beach. It was definitely an experience to be among other people, bathing in sun to get a better look, while going around whiter and with these red pulsing patches. Because, under the sun, your skin sweat and the effect is the patches get worse. After you tan, on the other side, your skin darkens and dries up. This helps hiding a bit the patches, but, unless you plan to live by the beach for a couple of month to achieve a sufficient effect, it's not really effective. None the less, the money you would need to live like that. So, when I went to discuss with the GP in Manchester, I found a really inexperienced doctor, but a well academically prepared one. Sure of himself, he prescribed me creams and solutions, dovobet hydrocortison cocois calcipotriol without and with bethmethasone daktacort betacap and after that, epaderm cream. He was surprised when after three months I went back and I had patches coming back. Without options left, he asked me if psoriasis was particularly bothering me. I said no, case closed. So, how could you do better. My experience is that cortisone and similar creams, do not help, if not just morally. I decided, if there is no cure, I prefer to live withouth harming further my body up until I'll be able to resist. I think these creams should be reviewed and should not be prescribed unless severe conditions. The effect is that you take them, and then psoriasis comes back stronger than before. So, would have a better effect to show our "creepness" (because that is how we really feel) to the world, and diffuse a culture where beauty is not in a clean skin, but in a smart mind. I feel bad to be around other people with my patches uncovered and have them stare at my patches. Are they mean? No, it's just weird to them, as it would be to me, and the stare the odd ones. I don't see other people with patches too go around. So am I the only creep? No, in the forums they say "dress to cover your patches". That's wrong. Psoriasis is a condition where the skin renovation accelerates, it thins up ok, but starts from accelerating. Psoriasis is not contagious. it just look to me that is something that is part of our nature. So, what would really help, would be to be clear there is no cure. There is no cure. Study is on its way. Researchers are studying it. There are "patches" for the patches. But just patches. As, there is no cure, do not expect to find a cure. And if you accept this, it will become the best cure itself. Well alway have something to complain about. We can do most things anyway even with psoriasis. Please, treat this as my personal opinion. Like a help to make people feel better. I do not intend to command anything or anyone. I just know what for me is basically bullshit and what really helps. Hope this helps, A.

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