Good afternoon to all psoriasis sufferers.

I am writing this as a UK member on here and this is based on my observations of fellow psoriasis sufferers and what I myself have had to put up with from the NHS, please bear with me on this OK, it is a long story.

Now, as we all know, P & PA is an awful thing to have.

It’s bad enough for us that we scratch to relieve ourselves & we bleed if we scratch hard enough but as you, my fellow P sufferers, we are very conscious of people staring at us like we are lepers when we are out on the streets, we wrap up like it’s winter when the sun is blazing & every Tom, Dick & Harry is wearing shorts & t-shirts.

Me, I wear long sleeve t-shirts & trousers or jogging bottoms (all 100% cotton) and I cook my conkers off in the heat during the summer time.

So, we all ask out GP’s for creams, potions etc until we get to see a dermatology doctor.
Now for me, I have had to wait nearly 2 years since having my last Enbrel injection to the next course of treatment which was Imixiflab (Remicade).

2 years nearly, doesn’t should long but the question is, WHY ?

Why on earth should I or anyone suffer this long with P ?

I live on Exmoor in a pretty little village & the nearest hospitals (non A&E) to me are Minehead & Tiverton, both a few miles away and once upon a time, the derm doc would come & do clinics there but not anymore !

So, I have to go to taunton hospital which is an hour’s drive, on a good day, longer on a bad day.
Taunton dermatology in my experience has got to be the worse I have ever come across in my 'P' life ever.
Their attitude stinks, uncaring etc etc.
I had to complain to P.A.L.S about the so called derm nurse because I have never met a more obnoxious uncaring nurse like it in my life. (She is now on long term sick & taking early retirement, surprise surprise).
It appears that these dermatology people just don’t care at all.
Unlike other hospitals over the years that I have been too, Christchurch was the best, fantastic, lovely, caring, helpful & very concerned about your welfare etc !
West Yorkshire, Calderdale hospital dermatology, again, the same as above, fantastic they were when I lived there.

When I read on here from Scottish P members & others around the UK waiting 3 or 4 months just to see a derm doc, my heart goes out to them because I know & feel their suffering.

With my bad experience & it’s still ongoing at taunton, I had an appointment on Wednesday to see the ‘clowns’ & I had, for the first time ever, to use my military veterans priority treatment form. (it is a form that the MOD gives veterans that were injured in war/peace time & claim a military sick pension & so on)
This form gives us veterans that have it, priority & jump the queue.
I didn’t want to use it because I know when I look around the waiting area in hospital there are so many others suffering P or PA but I had too because as you all know, psoriasis gets you down, you feel low, depressed etc and I too feel low.
Yes, I might act a clown on here, put lots of jokes on the joke thread to boost morale but i am fed up with waiting.

I moved area (Exmoor) and was under the impression that my care would continue without any break. I was given another prescription of injections (Enbrel) which kept me going until Feb/March 2014. When I phoned up to ask for some more I was told that I would have to wait. What for, I don’t know ?
I finally got my first dose of Imixiflamb ( Remicade ) in October in 2015 nearly two years waiting for something.
To cut an already long story short, I had horrendous side effects and was taken off of it (although my skin did clear completely for the first time since 1990 when i found out that i got it)
Since then I’ve been waiting and waiting for new treatment (stelera) I’ve nearly got there and am waiting for it to start really soon.

In amongst all this I was treated with disdain by the nurse whom as i said is retiring and was actually asked by her if I really did want the treatment (I kid you not) !!!
I think the whole system is a travesty, not just me but how others are treated by the NHS.
We P & PS sufferers go through hell with our condition and the lack of duty of care by the NHS is disgusting.
There are times when I think what’s the point in carrying on.
It’s put me under great strain and I have become reclusive but i know that i am not alone, NOR should you that has P or PA or both, have to put up with it.

Yes, the nhs has lot's of other things going on whether it be the dreaded C word etc etc but at the end of the day, we are all human beings, we shouldn't have to suffer & put up with it.


I do hope that you that reads this feels that you are not alone on this planet with your P & PA because you ARE NOT !

Where ever you are, whom ever you are, i wish you all the very best in the future.

Come & pop in here & join up & chat to us.

Take care

GB

I can sympathise with all that you have, and are going through GB .As you know we also have had horrendous problems with the NHS and if I was you I would contact one of the ex service organisation plus send a copy to my MP with a copy to Hunt all by e mail which is very easy to do plus a copy to the local paper. I would not let it lie , by the way I have found that PALS is a waste of time.
If there is anything I can help you with GB just PM me.

Good post Andy definitely written from the heart and well done you on having your say about the NHS. Unfortunately we hear this so often on Psoriasis Club and there are people in some areas that are not getting the same service as others. I thought when I left the UK 12 years ago now that the postcode lottery was something that needed sorting, but it has obviously not even been looked at in all that time.

It's a huge failing on the NHS and they are putting people in danger of suffering from low self-esteem, depression, and regrettably as we have seen a state of self harm or even suicide.

I fully understand your hesitation in using your military veterans priority treatment form. But it's a right that you have, and I would urge anyone with psoriasis to use whatever means they can to get the treatment they deserve. NICE have obviously wasted time and money on this: NICE Quality Standards for Psoriasis  

Andy I also can understand you sometimes thinking what is the point in carrying on, but those days have gone when we were all getting fobbed off with just a skin problem. (well I thought they had) Today psoriasis is a recognised autoimmune problem and more is being done to give us the help we deserve, there are treatments out there that can give us out lives back and in some cases we just have to keep pushing.

I say to anyone with psoriasis if you are not getting the correct treatment in the UK go and make a fuss and do like Andy has done, name them and shame them.

If anyone from the NHS or Taunton dermatology would like to respond you are welcome to join or use the "Contact Us" button bottom left.

Well done for speaking out Andy.

Great post Grizzly. As you know I have followed your progress or non progress since you joined here and with others here have tried to encourage you and seen you at low ebbs when you are promised treatment by hospitals and then having it snatched away.
I'm glad you have spoken out as your treatment has been disgusting and needs exposing the National Health Service has let you down. Nobody should be left to suffer the way you have

I just hope when you do get the new treatment Stelara that it works well for you and you never have the fiasco that you have had trying to get treatment .

I applaud you for speaking out, and anyone reading this from the NHS should be thoroughly ashamed of the way this ex-serviceman who served his time in war zones and developed this disease probably because of the stress of being  in these war zones

To then come home to be treated worse than an animal is totally wrong.... The people that failed him needed to see him at his low ebb when he was desperately trying to get relief from the hospital and getting terrible attention ... Being asked to travel across the moors for a simple blood test which could be done at a local doctors, travelling to get treatment and coming away with creams or nothing

I despair at the NHS in your part of the world and hope they can get their act together and not let others down as badly as you were let down Andy

You could be here in Oz, Grizzly, where you could contemplate the wonders of banana peels or set up a drug lab and make your own DMF. You might even learn to make friends with your psoriasis, or perhaps even collect the skin flakes from which you could make a papier mache and no doubt fashion some wonderful objets d'arte. You might just have the tools to release your creativity surrounding your whole person like the glittering tinsel on your pics.

(Mon-14-03-2016, 10:52 AM)Bill Wrote: You could be here in Oz, Grizzly, where you could contemplate the wonders of banana peels or set up a drug lab and make your own DMF. You might even learn to make friends with your psoriasis, or perhaps even collect the skin flakes from which you could make a papier mache and no doubt fashion some wonderful objets d'arte. You might just have the tools to release your creativity surrounding your whole person like the glittering tinsel on your pics.

(Mon-14-03-2016, 10:52 AM)Bill Wrote: You could be here in Oz, Grizzly, where you could contemplate the wonders of banana peels or set up a drug lab and make your own DMF. You might even learn to make friends with your psoriasis, or perhaps even collect the skin flakes from which you could make a papier mache and no doubt fashion some wonderful objets d'arte. You might just have the tools to release your creativity surrounding your whole person like the glittering tinsel on your pics.

Would you like an upside down xmas tree sent to you Bill ????

I'll make sure that there are a few funnel webs in it too

Hope your keeping well down under Bill ?

What, a papier mache one? It wouldn't make it through customs, especially with the eight legged expats. Maybe I could send you some DMF powder? You could use it for snow in some Christmas pics and lick them when your annoyance with the NHS boils over. The ensuing discomfort will wipe all attentions on the NHS from your conscience I assure you.

I continue to be very happy with my treatment. I take a bit over 800 mg of DMF twice a week. I would take it every second day if I could, but what I am on seems to be about my best compromise between controlling the disease and the side effects. I take great solace in the fact that my disease is in subsidence (bloody slow though!) and that I dont have to consult you guys about banana peels.

I hope you get some effective treatment soon. I think it wrong that you are kept waiting. I mention circumstances in Oz not because I think you have it too good, but to try to give you some solace in knowing it is tougher elsewhere.

Cheers!

GB I feel your pain.

I have had the unfortunate necessity to have several dealings with the NHS over the last few years. Maybe I am getting older but I would not consider myself a burden and I am OK waiting. However 2 years is far to long and not to have continuity of treatment.

Everyone knows the NHS model is broken, the front end staff do an amazing job while the backend, well, acts like a backend. Just arses making money for themselves with far too many execs on 6 figure salaries. The NHS is unsustainable and it will only get a whole lot worse.