Patients rights. I think we should all know this document or have it to hand. This one is for Scotland

[cathie]

This is the Charter of Women's Rights for Scotland

hris.org.uk/patient-informa...

I've been told that my anti-tnf treatment will be withdrawn from mid-november. I'm not happy about this (see below!!) and this document (p.9) says that NHS staff cant make decisions about my treatment without my agreement; that I'm entitled to a second opinion and that I'm entitled to be given proper relevant information.

This is worth studying!

[Hidden]

Haven't read the document yet but will later. It sounds as if you have now been given an ultimatum??

I know nothing about anti-tnf's etc. really but I think you are so right to be cautious. Yes, it would be ideal if you could sustain remission without these powerful drugs, I'm sure that is what you would want. But with so much uncertainty surrounding whether you will be okay without them and, as you said elsewhere, about how easy it would be to resume the treatment, you have to be very careful.

And it does sound as if a period of reflection & consultation is exactly what you are entitled to.

How are you going to proceed?

Good luck,

Christina xx

[cathie]

On 1st October I was told that the consultant had decided I was in remission and that the two meds I'm on (infliximab + methotrexate) would be withdrawn. I argued for a delay, given that my father had just died and there was all sorts of uncertainty, so she agreed for me to have one more infliximab in mid november. She didnt examine me, had asked me how I was and I said OK which was true.

So what am I going to do?

I've seen the GP but he wants to wait til he receives letter from hospital - or end of next week. But the patients charter suggests that I can get a second opinion and a rethink.

I've written to NRAS asking for help

I dont know the rheumy nurse but am thinking of trying to contact her for advice on what to do.

I'm seeing the gastroenterology people next week (about the non-alcoholic fatty liver disease) and am hoping that will provide more ammunition.

I've written to the dermatologist I saw to get more info on that.

So at the moment - given that the RA consultant didnt have information I am going to try to assemble as much as possible myself.

When I see her I'm going to argue that

a. we need more information before embarking on what could be a life-changing decision

b. couldnt we withdraw treatment gradually? ie. reduce methotrexate

c. I need to have scans and xrays and things to see where the disease is at.

d. what guarantees would I have that I wouldnt have to start all over again with years of treatment which may not work very well. I'm nearly 66 and these are precious years!

If I'm not happy I will tell her that I want a second opinion - though if its in the same hospital unit I suspect that wont get me very far. I might write to the consultant I used to see in England for advice privately. He was very good at reining in his more impetuous colleagues.

Thanks for your interest - I hate to think of other people in this situation but it feels to me that while we are benefiting from treatment, it could be removed at any time unless we are vigilant.

[Tillytop]

Hello Cathie

I have just replied on your "remission" thread so won't repeat it all here. But glad you have a plan - and it sounds like a sensible one to me.

Thinking of you and really hoping you can get this sorted very soon.

Tillyx

[cathie]

I have just had a really helpful message from NRAS in response to a question to their helpline. I'll say more on my remission thread. NRAS is brilliant!

[earthwitch]

Yes, very glad you have a plan now.

In England the PALS service is the one who coordinate complaints about the NHS. In Scotland its a designated NHS liaison person at your local CAB. Definitely worth lodging a complaint and getting them to investigate for you and act as your advocate. In my experience they can really hasten a response and get things looked into quite quickly, and with good result. Probably worth letting them know what is going on and how you are planning on dealing with it even if you don't want their help right now (as your issue will then get recorded and noted).

The other place I would consider going to in Scotland for this kind of treatment issue, would be my MSP. Depends a bit on how approachable yours is, but in our very rural area he is great, and excellent at asking the right kind of questions about what is going on, and whether it is an issue for more than just you that needs dealing with.

[cathie]

Thats a good approach. Thankyou. Ill let you know how i get on

Cathie