The Journey Begins! AGAIN!!!!

[pingu]

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.

[Fred]

I'm a bit confused, you have been prescribed treatment but they now say you need to be referred. If the person treating you is a dermatologist then they can prescribe a bio. 

Not sure if this is still the same today: NICE issues new guidance for GPs treating psoriasis

Quote:

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In this guideline, first-line therapy describes traditional topical therapies (such as corticosteroids, vitamin D and vitamin D analogues, dithranol and tar preparations). Second-line therapy includes the phototherapies (broad- or narrow-band ultraviolet B light and psoralen plus UVA light [PUVA]) and systemic non-biological agents such as ciclosporin, methotrexate and acitretin. Third-line therapy refers to systemic biological therapies such as the tumour necrosis factor antagonists adalimumab, etanercept and infliximab, and the monoclonal antibody ustekinumab that targets interleukin-12 (IL-12) and IL-23.

[pingu]

Sorry I thought it may be a bit confusing. I have done all the first line treatments. My consultant prescribed Ciclosporine again and I refused as it simply didn't do anything the first time he prescribed it. He wasn't aware he had prescribed it I had to get the pharmacy to pull my old prescriptions, hence he hasn't kept proper records. I am not going to start a course of treatment that didn't work once, I don't see how it will suddenly work this time.

[Fred]

Sorry I thought it may be a bit confusing. I have done all the first line treatments. My consultant prescribed Ciclosporine again and I refused as it simply didn't do anything the first time he prescribed it. He wasn't aware he had prescribed it I had to get the pharmacy to pull my old prescriptions, hence he hasn't kept proper records. I am not going to start a course of treatment that didn't work once, I don't see how it will suddenly work this time.

I'm biased as the bio's have only been the thing that ever worked for me, but if I was in the position you are now I would fight for a bio.

Read up them here: Biological Treatments For Psoriasis

[pingu]

Yea I am just trying to start navigating how to push hard rather than my usual reaction of immediately taking the nuclear option then negotiating with survivors when they realise I was actually really serious at the very start.

I've already been hit with the "it's very expensive" which I assured them I didn't give a monkeys as a tax payer all my life.

[Fred]

Yea I am just trying to start navigating how to push hard rather than my usual reaction of immediately taking the nuclear option then negotiating with survivors when they realise I was actually really serious at the very start.

I've already been hit with the "it's very expensive" which I assured them I didn't give a monkeys as a tax payer all my life.

The doctor doesn't pay for it, like you say "you pay for it with your contributions"

Good luck and give em hell.

[Kat]

Sorry you're having difficulties. I know nothing about how your system works but I hope you're able to get on something beneficial soon!!!

[Forest Walker]

It sounds as though this doctor wants your Psoriasis to get really bad again before giving you a referral.  That is bad medical practice.  AND there is the medical records error.  It also sounds as though he is not accepting responsibility for that.  I don't know how the NHS is navigated.  Do you need the help of an attorney?

It is a bad idea, in my opinion, to wait until you get sick again.  What kind of doctor wants that to happen?  It makes no sense to me.  What gets you well, keeps you well.  You are an adult with a lot of experience of knowing your body and living with Psoriasis.  I'm glad you are able to stand up for yourself.

[pingu]

It is a bad idea, in my opinion, to wait until you get sick again. What kind of doctor wants that to happen? It makes no sense to me. What gets you well, keeps you well. You are an adult with a lot of experience of knowing your body and living with Psoriasis. I'm glad you are able to stand up for yourself.

Exactly this, I ploughed through some most of the NICE docs and nowhere does it say do not refer, they have PASI score and that but thats not preventing them doing something now. I really don't want to escalate but if his dorr is closed I will find another one to kick in.

We don't need to go legal just being a PITA that they decide to deal with now rather than having me pushing every button I can find.

Apologies I feel quite strongly about it so, I will keep you posted. Currently seeking advice from patient support teams.

[Fred]

Apologies I feel quite strongly about it so, I will keep you posted. Currently seeking advice from patient support teams.

You are welcome to vent here, it's why we are here. As long as you don't mention doctors by name then it's fine.

Like you said before, you have paid your dues (as we say in the UK) and you have your rights. I have found in the past if you mention the press or your local MP more gets done, just saying.