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Another idea regarding NICE

Dear All,

I would like to encourage those of you who have good relationships with your CML doctors to ask them to contact Prof. Mike Richards regarding the ACD on nilotinib and dasatinib.

There is no doubt that Mike Richards is a very sympathetic and humane man and he might be able to help persuade NICE that they are making a mistake and therefore change the recommendation of this ACD.

It would be very powerful if, rather than patients, the expert CML clinicians, who are no doubt as upset as we are by the prospect of not being able to effectively treat their IM resistant/intolerant patients, were to contact Mike Richards directly and share their concerns from a clinical point of view.

If you would like to help me with this idea, please contact me directly with the name of your doctor so we can be sure that we are asking the right people to help and also not subjecting the same doctors to multiples of the same request.

Sandy

Sandy
Do you mean Professor Mike Richards CBE, National Clinical Director for Cancer at the Dept for Health?

I do wonder if the more of us that approach our specialists re the idea the more it will add the extra emphasis that some of them might need to do this? Also perhaps an outline letter plan could be a good idea. I did this personally when I had to battle with PCT earlier this year. It cuts down on the paperwork for the Docs.

Should we also think in terms of GPs, Some GPs may be prepared to write on behalf of individual patients? Or do you think it will not have the desired impact?

Pennie.

Hi Pennie... yes that is the Mike Richards that I am referring to. Do you think you could contact your specialist and ask him to contact Prof. Richards? I think CML specialists who understand the impact a negative decision from NICE will have on their clinical practice and patients are in a unique position to argue the case. Mike Richards as the so called 'Cancer Zsar' is hugely influential.

Best.....
Sandy

Hi Sandy,

I'm seeing my Haemotologist tomorrow, so did send an email through as you asked for people to contact you direct? Anyway, the info you would want is that it's Dr Grace, Eastbourne DGH.
I think Pennie has answered a query I had on who Mike Richards is and I've made a note of that to ask doc tomorrow.
Vickie

I only saw the Registrar today and when I asked him what their department (or Dr Grace) was doing to support the use of these drugs, the answer was "nothing, we're leaving it to those who know more than us and who can put forward stronger arguments". I requested that an argument was put forward to Prof Mike Richards, but no response to that. He did also say, that the department would continue to supply it to those who are responding, but that doesn't really help those who are not yet on this drug who might need it! My Specialist Nurse wasn't on today either and the nurse who was in attendance said "I can't be bothered"...
It made me very angry to hear these responses in the light of just how hard people are working who are ALSO unwell....humph...
BTW, Dasatinib continues to work for me and maybe next time I'll be approaching the zero club which is amazing after seeing such a poor response over 18months on Glivec.
Vickie