Health Boards
Sat-09-04-2016, 19:07 PM
I would like to say firstly that this is my personal experience and may or may not be indicative of other peoples experiences.
I have had psoriasis for about 35 to 40 years I am now 49 so most of my life. Admittedly in that time the treatments and the efficacy of those treatments has changed. However I want to comment on how to deal with your GP and or consultant.
When I first got psoriasis I was referred to a consultant and went through many different creams. My parents had psoriasis so it was not new but as a child really difficult.
I went through all sort of creams but was never prescribed UVA treatment.
When we discovered a cream that was reasonably effective I was left on that for a very many years. Basically I was a statistic now. A psoriasis sufferer. A sufferer of a chronic illness without a cure. Simply a cost. I received repeat prescriptions at the drop of a hat. At the end of the day I was a patient on my GPs register and he kept me "reasonably content" with repeat prescriptions.
This was not one GP but several as you can imagine in 35 years I moved a few times and every single one was the same. register get a prescription and never see them with reference to my psoriasis again
I discovered sunlight helped so sometimes went on sunbeds and whenever we had sun got some respite there. I was alone. There was no help. OK there were secret remedies guaranteed to cure me on the internet and special diets of knitted oats cooked with the tears of baby unicorns sprinkled with moon dust but they were expensive and dare I say probably not worth it.
In all that time my GP was quite content to have me on steroid creams long term, never calling me in for a consult to see how it was going, offering other therapies or a referral.
It was only when I investigated a little as my psoriasis was getting a little worse and I discovered many new treatments were available.
Now here is the point.
Do not take what your GP or consultant say as gospel, at the end of the day YOU are a CUSTOMER and deserve certain things. Make sure they understand you and your expectations and understand if they are firstly realistic and secondly achievable.
NO that does not mean you always get your own way but certainly I discovered my GP actually knew very little about what was available and I had to request a referral. So first thing is get your referral. Then work with your consultant. You have a lifestyle so some treatments may not be right for you. Some may disagree with you. You also need to give the treatment time.
Bare in mind that this is cost driven, the NHS is a business and somewhere someone has to pay even if its through insurance. If you were paying for your own therapy you wouldn't necessarily go out and get the most expensive when something at a tenth of the cost was effective. Well certainly that's how the NHS works, it works well most of the time. To a degree I feel it is keep the masses at bay with lotions and creams at their GPs. Its only when you ask that you get something a little better. Knowing WHAT to ask is also key.
Educate yourself but be reasonable. You can't expect to go on the very latest high cost treatments if you have not tried the lower cost alternatives. Stick to your guns about getting the right treatment that works for you and your lifestyle, educate yourself and ask questions of your consultant and in here.
It's your life and your skin, work with your consultant. I certainly have been treated a lot better following the little knowledge I have gained through more research. After 4 weeks on MTX I was pretty clear. I was delighted but felt I was a little cheated as I could have been offered the treatment sooner. I had to aks for it though because I would still be on repeat prescriptions if I hadn't.
I have had psoriasis for about 35 to 40 years I am now 49 so most of my life. Admittedly in that time the treatments and the efficacy of those treatments has changed. However I want to comment on how to deal with your GP and or consultant.
When I first got psoriasis I was referred to a consultant and went through many different creams. My parents had psoriasis so it was not new but as a child really difficult.
I went through all sort of creams but was never prescribed UVA treatment.
When we discovered a cream that was reasonably effective I was left on that for a very many years. Basically I was a statistic now. A psoriasis sufferer. A sufferer of a chronic illness without a cure. Simply a cost. I received repeat prescriptions at the drop of a hat. At the end of the day I was a patient on my GPs register and he kept me "reasonably content" with repeat prescriptions.
This was not one GP but several as you can imagine in 35 years I moved a few times and every single one was the same. register get a prescription and never see them with reference to my psoriasis again
I discovered sunlight helped so sometimes went on sunbeds and whenever we had sun got some respite there. I was alone. There was no help. OK there were secret remedies guaranteed to cure me on the internet and special diets of knitted oats cooked with the tears of baby unicorns sprinkled with moon dust but they were expensive and dare I say probably not worth it.
In all that time my GP was quite content to have me on steroid creams long term, never calling me in for a consult to see how it was going, offering other therapies or a referral.
It was only when I investigated a little as my psoriasis was getting a little worse and I discovered many new treatments were available.
Now here is the point.
Do not take what your GP or consultant say as gospel, at the end of the day YOU are a CUSTOMER and deserve certain things. Make sure they understand you and your expectations and understand if they are firstly realistic and secondly achievable.
NO that does not mean you always get your own way but certainly I discovered my GP actually knew very little about what was available and I had to request a referral. So first thing is get your referral. Then work with your consultant. You have a lifestyle so some treatments may not be right for you. Some may disagree with you. You also need to give the treatment time.
Bare in mind that this is cost driven, the NHS is a business and somewhere someone has to pay even if its through insurance. If you were paying for your own therapy you wouldn't necessarily go out and get the most expensive when something at a tenth of the cost was effective. Well certainly that's how the NHS works, it works well most of the time. To a degree I feel it is keep the masses at bay with lotions and creams at their GPs. Its only when you ask that you get something a little better. Knowing WHAT to ask is also key.
Educate yourself but be reasonable. You can't expect to go on the very latest high cost treatments if you have not tried the lower cost alternatives. Stick to your guns about getting the right treatment that works for you and your lifestyle, educate yourself and ask questions of your consultant and in here.
It's your life and your skin, work with your consultant. I certainly have been treated a lot better following the little knowledge I have gained through more research. After 4 weeks on MTX I was pretty clear. I was delighted but felt I was a little cheated as I could have been offered the treatment sooner. I had to aks for it though because I would still be on repeat prescriptions if I hadn't.
