Health Boards
Fri-11-03-2016, 15:38 PM
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 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