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Networking

Just to let you know, that over the past few weeks, I have been contacted by two people now who have picked up on what I've been posting around the world!

The first was a friend from the past, whose wife is a trustee of Leuka (check out their website)who raise money for research at Hammersmith and the second I received this morning from someone who is part of a group I belong to...

My wife is a Nurse Practitioner and
sits on the Camden Primary Care Trust Executive Commitee which deals
with NICE etc, feel free to email you thoughts. A friend of ours is a
GP in Devon and recently spent three days in Amsterdam, care of a large
drug co.

I have today written to her and will give her the relevant links if she feels able to involve herself.

I'm sure there are a lot of us who are networking in this way and it all helps to keep the momentum going.

ATB

This is the response that I have received having written to my contact as above...

It seems the Party line is that " if the NHS paid for every drug availiable on the market then it would soon be bankrupt"

BUT, it has been the case that NICE has recinded its judgements in the past. If enough Consultant Oncologists were to lobby for the case of Dasatnib providing testaments that the drug DOES actually effectively work for their patients then maybe they could change the outcome. This has worked in the past.

Just because a drug is not NICE compliant does not mean that a patient cannot receive it on the NHS. It is, in fact, up to the local Primary Care Trust to decide what it funds. In Jo's practice they prescribe a drug for Type 2 Diabetes to a few of their patients that is not NICE compliant. The patients' consultants have lobbied her PCT and the partners have decided to fund the treatment. NICE was originally set up to prevent the "Post Code Lottery" for patients receiving differing treatments according to budget. It seems it has failed and that it very much is the case that some PCT's will fund offlist drugs if it is shown that the treatment works for an individual patient.

I don't know how much help this is to you or your CML group apart from the fact that a NICE decision is not the final say for the prescribing of a drug treatment.

If you have any questions regarding NHS/PCT protocol or anything medical please don't hesitate to email and I will pass it on.

Vickie

Dear Vickie,

Yes your contact is correct and reimbursment of therapy can be applied for in that way. However that is not at all ideal and it is a very difficult process for patients to go through. There have been several people that have been refused by PCT's even thought their doctors have put a good case.
Please take a look at the booklet called 'Treatment We Need' on the left of this page, which is written by Peter Telford, a barrister who works with individuals who need access to treatment not funded by NHS.

Sandy

This took me months of hard graft and serious strain an stress, and that was using the excellent booklet Sandy suggests. Also had Consultant, GP and MP on the case.

This is a terrible process to go through and involves loads of paperwork, letter writing and phone calls if my experience is anything to judge by.

Terrible that there should be not just a post code lottery, but that two patients in the same PCT will have to fight the same way to get their own individual treatment. There is no way one persons success means that another person even treated at the same hospital living in the same area will get the same decision. ITS A LOTTERY of the worst type.
Pennie.

Totally agree....I posted the response that I had because of the sheer frustration that even the most helpful of our contacts in the end, can't help. I do appreciate that this is all stuff that you guys have been through before which must make it even more of a frustration for you....not only is there the personal battle of the Leukaemia...it's various treatments to overcome, whilst also being as involved with family life as we can...but we must almost humiliate ourselves with these monstrous battles..and then there's the obscene responses from some members of the public to recently publicity, that public money must be used for the good of all ...Well, hey, why not just donate the occasional grounded Chinook that cant be flown after costing millions of quid because it doesn't have the right equipment on board....We could raffle it and the winner gets their treatment for another year...
Sorry guys,,,,got a problem with an abcess at the moment which isn't responding to anti-b's and I'm off to see the Occupational Health (again) because of recent time off due to severe, undiagnosed pain...in the meantime, I continue to walk on the abscess in order to be at work...I think they'd like me gone and I don't have a pension...
Vickie