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Please respond to NICE appraisal.

Hi Everybody,
Please find some time over the next few days to respond to the Appraisal Consultation Document. This link takes you straight there.

www.nice.org.uk/guidance

It is so very very important that we all put our views forward. It will take us some time to fill it in, but

THIS IS TIME SPENT TO HELP US GET LIFE SAVING TREATMENT.

EVERYONE OF US COULD NEED THESE SECONDLINE DRUGS, please SPEND THE TIME AND FILL IN THE FORM.

Sorry to shout - but this is so important, numbers matter and there are very few of us so we all need to do this urgently.

The Petition has until end of dec to sign, and will just take a moment, make that second priority, the ACD is first one.

Come on we can do this!!!

Pennie.

I totally agree that as many of us as possible should respond. The process is simple. It does take some time to get the words together but it is important we all say what we think in our own words. If we all follow a draft so that the same forms of words keep appearing in submissions, they loose some weight. However, there are many points already on this forum so there is plenty to comment on.

I have also arranged to meet my MP this week end to explain how I feel to him. Again, the more people that do this the better. I think referring to the Number 10 petition at that meeting may be helpful.

Simon

I've responded - found it somewhat cumbersome to do this but commented where i thought appropriate. also, good to see over 200 signatures, in one day, to the petition. I have mentioned the petition to my MP, who is quite senior in one of the opposition parties. He hasn't responded to my letter yet but has a drop in surgery which I will visit as soon as I can.

I think the only way I'll be able to do it is by lifting a lot of what's already been said in various postings..regurgitated..when you only get a few hours sleep a night (I love you really Dasatinib)composing fluent responses to a document like that, is going to be hard, hard. Can anyone tell me if you have to fill it in all in one go, or is it possible to save it, sleep on it and continue the next day?!!!
I can see this might need chocolate...
Vickie

Dear Pennie and Simon,
thanks for your posts on the NICE submission and I agree with Simon that using your own words and expressing you own views is important and it carries more weight.

I am not sure the Number 10 petition will help (Michelle knows my views on this) but it can do no harm.

CML Support will be officially lobbying the DH ministers rather than the PM.
As I said in a previous post, I am meeting with representatives from 2 leukaemia charities next week in order to consolidate our official responses to NICE by December 7th.

Simon... it is really good that you are seeing your MP. If you can try to get him to ask a question in parliament then that would be a bonus.

Best wishes,

Sandy

Sandy

It would be very helpful if you could suggest what an appropriate question (presumably to the Health Minister) might be. My email address is simon.clayson@live.co.uk if you would like to contact me "off line".

Simon

Pennie is absolutely right. It is vital that EVERY SINGLE ONE OF US fills in the NICE form. If these two drugs are refused to CML patients, and any of us suffer intolerance or mutations, the only alternatives to Glivec will be Interferon or a bone marrow transplant. Interferon is self administered injections. horrible to endure and to be quite frank, it wont save lives. Interferon, which is what NICE are proposing to move us all back to if we have problems, is something from the dark ages. Apologies if the wording upsets people, but we must have these drugs.
The petition is fine, but, in my opinion, it's not going to change NICE's verdict.

PLEASE FILL IN THE FORM. It could save your life.

I do very much understand what has been said about the petition, but please remember how very much it also means to family and friends for them to FEEL that there is something they can do. One of the things that has upset me the most since diagnosis is just how very much it emotionally impacts on my ageing mother and my mid-twenty-year old "children".
It can do NO harm and raises the whole profile of what NICE are doing to so many cancer sufferers.
C'mon, let's not get negative about this hey?
Vickie

Oh I'm sorry Vickie, it sounds like I've upset you. I didn't mean to do that. My post wasn't directed at you personally, it was aimed at all or any CML'er. There's absolutely nothing wrong with the petition [I think I was maybe the third to sign it]?

NOOO!!!I'm not upset..more upset with my blocked downpipe!!!!
Thank you anyway!!!
Vickie

My mothers MP has responded like this:

"I will shortly be writing to your local Primary Care Trust to encourage them to lobby the NHS on your son's behalf, as they have a commitment to his care. I will also be writing to Mike O'Brien, Minister of State for Health Services asking him to re-evaluate the government's position on what NICE have presented to them. It is NICE's responsibility to make such difficult recommendations on care provision but I hope that by presenting your side of this situation clearly we might change the decision."

Hi Sandy is this enough or do we need more. Like bringing it up in parliament.

Carlos