No faith in doctors or the nhs

Posted Wed 23 Aug 2017 02.22 by Gemma100

I have completely lost any faith in doctors or the NHS helping me. My story dealing with the NHS. I was diagnosed with psoriasis in January this year. After waiting two weeks for an appointment to see a doctor I was prescribed Dovenex. Within. A few days it began to severely burn me. After my doctor told me this could happen and insisted on me carrying on with it. Because he said my body would get used to it and the burning would stop. How wrong he was. The burning increased and the plaques got bigger. Next I was prescribed dovobet. I told my doctor I had read that people had had problems with it because it contained a steroid and may trigger a flare. He said don't believe everything you read we are only going to use it for three weeks then come back and see me again. At first it seemed to reduce the redness for the first couple of weeks, then I noticed that other areas of my body were starting to get small pale rashes and the plaques were getting redder again . I went back to my doctor pointed out what was happening. To which he replied so there is some benefit then. I repeated what I had said and he took no notice. He then told me to carry on using for a further four weeks. Out of pure desperation I did. Four weeks to the day from starting using it I woke up one morning almost covered head to foot in Psoriasis I had had a massive flare. I stated with only around a dozen small patches on my back around four on my chest a couple of small patches on my shins to being covered. After finally managing to an emergency appointment I was just sent home with no medication to as they said let my skin settle, their way of fobbing me off. After about a week some of my plaques became very painful and sore. I managed to get another doctor from the surgery to come out who basically though I a exaggerating. They said psoriasis may be unsightly but it is not painful and palmed me off with some anti histamines for the itching. After a couple of days I couldn't stand the pain anymore so went to the infirmary. A doctor examined me and informed me some of the plaques were infected and prescribe antibiotics. They asked me if I had been referred to a dermatologist. No I said, the doctor said she would write to my doctor and recommend it. Within a week I got a letter saying I had been referred for Puva treatment but not for another eight and a half weeks. I thought there is no way I can cope waiting that long. That is when I found out about uvb treatment at home. I bought myself a canopy and decided to start treating myself. It took a while before I saw any improvement. But once it started it worked wonders on me and cleared quite a lot of the areas by the time my appointment came round. Then I made a big mistake I let the NHS take over again. I had to attend only twice a week , which I have read most hospitals do it three times a week, and would only receive a maximum of twenty four treatments. So after getting up to two and a half minutes of uvb which was clearing me I dropped down to seventeen seconds for my first treatment of Puva. I have attended every appointment for around eleven weeks and to be honest not seen that much improvement compared to what I had with uvb infact the areas where I still have it have turned to looking like bruises rather than clearing. On my twentieth appointment the bottom of my legs got badly burnt and not surprised they had me in there ten and a half minutes. I was not able to have treatment the following week Because I was still too sore. So yesterday after the majority of the soreness had gone they decided to carry on. I reminded the nurse who had carried out the last teatment I had been burned. She said don't worry we are going to lower it back down. So I stood in the cubicle for my treatment the machine switched off and I got out. As usual the nurse had gone and was nowhere in sight. I hunted round and found her. I said I seemed to be in there along time, how long was I in there for. She said ten minutes fifty seconds at 319 joules. I said hang on a minute that what power it was on when it burnt me and not only that you had me in there an extra twenty seconds. So guess what happen as I write this here I am again with the bottom of my legs flame red and severely burnt. Needless to say I will be not be attending any more appointments and when the soreness has gone I am returning to treating my self at home. I have no faith whatsoever now in doctors or hospital helping me all the have done so far is make my condition worse. Is it just me or has anyone else lost faith?

Posted Thu 24 Aug 2017 17.12 by Metarie1985
Beauty standard ignorer, unapologetic P sufferer for 10 years, determined to stay positive!

I'm so sorry you've had such a terrible experience. I have to say I've had the complete opposite experience with NHS Grampian - this is my second bad flare up and it could not have gone better. I'm afraid the only thing I really suggest is standing up for yourself and I hope that doesn't sound too dismissive or patronising. I'm on my 45th UVB appointment (of this cycle - they do 30 treatments initially then 5 treatment blocks until *I'm* happy to end the treatments. It's MY decision when my skin is clear enough for me to cope). I'm at 4 mins 8 seconds and I'm the palest woman alive! I ask my nurse how long I'll be in for before I get in the cubicle. I've even left the cubicle early if I feel too hot! I've told my dermatologist and GP what I've researched and what I want to try. They understand that after 10 years of suffering from P that I probably have more experience and knowledge than they do. When you say 'doctor' do you mean your GP or your derm? Because GPs are useless in my experience. Thankfully I've found one who actually sits on a board who review psoriasis treatments with patients and she is AMAZING. I'm confused as to how you were referred for PUVA without a derm appointment, that's not right surely? I'm not sure what the criteria for PUVA vs UVB is but I was under the impression that UVB was the first port of call, after topical lotions & potions... I would personally get another GP, ask the clinics before you register if any of the doctors there have any experience with psoriasis - you might find that one of the GPs has family with it, so at least you know they'll be sympathetic and not treat you like you're over reacting. 1 in 10 people have it, you've never far away from another flakey :) Also, complain to your local NHS board! Give feed back, tell them you're not satisfied and you're concerned about the lack of knowledge that's been demonstrated. Considering it is one of the most common skin conditions and has had a lot of press recently, that's just not acceptable. Psoriasis is an utter bugger and the amount of strength it takes to fight for the level of treatment you deserve is huge. Don't let the b*stards get you down. You will find something that works for you! One important thing to say is yes, you will look bruised as the scales clear. It's actually called psoriatic bruising and it does take a while to go. Usually you'll stop getting treatment when the skin is smooth, soft and mostly back to normal texture and colour. The bruising appearance will hang around a while, even when mine had disappeared at first look, it would reappear if I was in a hot bath or particularly cold. So don't see that as it not working, it's just a long slow process.

Posted Thu 24 Aug 2017 23.02 by Gemma100

I am pleased you are having a better experience than me. I did have an appointment with a dermatologist first who to be honest did not seem interested and appeared to just go through the motion. It may be me but I also thought the dermatologist would have checked my progress but I have not seen him since. In a way I blame myself because of my previous experience of the nhs. I researched the condition and purchased a uvb canopy. By the time my appointment came round my psorasis have significantly improved and some areas had cleared. But I thought the best thing to do was keep the appointments and leave it to the experts. But of course now I regret going. Once my burning and soreness goes I am going to return to uvb as and when required. That way I can control it myself. I was never burned while using the uvb in fact if I only got slightly pink it improve my condition and that was only at two and a half minutes. The thing that I found strange was I told my dermatologist I had a uvb canopy and had been using it with good results. When I asked if I could use uvb treatment he said their was a very long waiting list and if I had Puva I would get treatment more quickly. I did infact start teatment within two weeks. What made me surprised and angry was. After using the cabinet a couple of times I noticed only half of the bulbs were lit. When I questioned it I was told half were uva and half were uvb. So why was there a longer waiting list for uvb it was the same cabinet? Maybe it's just the nhs in my area!

Posted Tue 3 Jul 2018 22.07 by lwrightuk

Is anyone in this post still live on the forum?

Posted Thu 17 Nov 2022 16.13 by josh93

The NHS has been absolutely awful for me trying to get treatment.

Posted Thu 24 Nov 2022 15.20 by redsquirrel (edited Thu 24 Nov 2022 15.22 by redsquirrel)

maetarie1985 - loved your reply! definitely complain about any un supervised uvb. yes doctors can know very very very little about ps -its a specialist field and triggers vary soo much from person to person - the vagaries of the immune system... just one thought Gemma100 - Im allergic to anything containing pariffinium liquidium. This is basically petrol. Most creams prescribed by the nhs commissioning system by massive conglomorate drug manufacturers - contain this. So I cant use any of it. It burns my skin like you said. Cosmetic brands have cottoned on to glycerin instead of paraffinium liquidium - if anyone can get the nhs to do the same - I will be sooo happy! they all say to me its impossible...well it shouldnt be! when my skin is really bad the only thing I can use is olive oil. regarding uvb - I tried this about 30 years ago and got burnt. I just wont try it again but may go for sunbeds or a lamp - I know its slightly different but it may be worth a try. Good luck and best wishes - it is a long road but you will learn how to manage Im sure.

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