Health Boards
Wed-11-09-2024, 14:36 PM
Well a very brief summary of where I am at first. Started on Methotrexate worked well for a number of years until I was taken off it due to poor liver score which is now back to a 0-1. I then went on to Acitretin which nearly killed me! Severe reaction did something to my blood counts and I got called to come off it straight away and stay at home for 2 weeks so I didn't get so much as a cold. Then Apremilast and which didn't work and my consultant had me taking Apremilast with Skilarence. These didn't work either. Lastly for the past 2 years I have been on Cislosporine.
Now I have to come off Ciclosporine as you can only be on it for 2 years.
Now, my consultant prescribed me Skilarence again and I declined as it didn't work and he said he had not prescribed it and he had no record of it! Great, not keeping proper medical records.
He tried again to get me to go on it but I have insisted on a referral but he has stated I cannot be referred to the biologicals team until I have a PASI. However, I am now not on any medication and I know that in the coming months my psoriasis will flare up again. His secretary stated NICE guidlines which I have read and none of them prevent hinm referring me, what the guidelines are is a PASI of 10 and a DLQI of 10 to be prescribed biologicals.
I will easily hit these when my current medication wears off and not looking forward to a flare up. I am tempted to push to get the referal as there is a wait after he refers me anyway, he can do it immediately and I am in the queue and my take is that I have a condition that will deteriorate and now I am in a position where they are doing nothing about it.
Interestingly I know its about cost and I asked to go back on methotrexate as my liver scores indicate there is no damage, the NICE guidelines he states suggest methotrexate as a first line of defence followed by other treatments.
Today I am at a loss as to escalate via PALs, ask for a second opinion or even go full nuclear and report incorrect records keeping and duty of care.
Any advice greatly appreciated any questions feel free to ask.
Thanks and sorry for the rambling rant.
Now I have to come off Ciclosporine as you can only be on it for 2 years.
Now, my consultant prescribed me Skilarence again and I declined as it didn't work and he said he had not prescribed it and he had no record of it! Great, not keeping proper medical records.
He tried again to get me to go on it but I have insisted on a referral but he has stated I cannot be referred to the biologicals team until I have a PASI. However, I am now not on any medication and I know that in the coming months my psoriasis will flare up again. His secretary stated NICE guidlines which I have read and none of them prevent hinm referring me, what the guidelines are is a PASI of 10 and a DLQI of 10 to be prescribed biologicals.
I will easily hit these when my current medication wears off and not looking forward to a flare up. I am tempted to push to get the referal as there is a wait after he refers me anyway, he can do it immediately and I am in the queue and my take is that I have a condition that will deteriorate and now I am in a position where they are doing nothing about it.
Interestingly I know its about cost and I asked to go back on methotrexate as my liver scores indicate there is no damage, the NICE guidelines he states suggest methotrexate as a first line of defence followed by other treatments.
Today I am at a loss as to escalate via PALs, ask for a second opinion or even go full nuclear and report incorrect records keeping and duty of care.
Any advice greatly appreciated any questions feel free to ask.
Thanks and sorry for the rambling rant.