James Whale Blog: May/ June 2008
21 May 2008
Firstly, let me say thank you to everyone for their messages of support during a couple of turbulent weeks in my career; I appreciate them very much.
So, yet again we here the terrible news of a sick person being bounced around the country like a ping pong ball chasing a PCT which will prescribe vital cancer drugs. I was appalled to hear Ian Walker’s plight: At 69, on top of being told he has kidney cancer, he may have to suffer the additional stress and indignity of having to move house to 100’s of miles away simply to receive the care and support he needs. West Berkshire doesn’t prescribe Sutent, Newcastle Upon-Tyne and others in the North East do! Yet again, those words ring out: POST CODE LOTTERY. When will we see the end of it? You could live or die depending on where you live; it is a down right disgrace and it has to end. I thought his daughter Sarah put it very succinctly; "If Dad should lose his life to cancer, it would be devastating, but to lose his life to bureaucracy would be far, far worse." We at the fund will continue to fight for all PCT to be free to prescribe Sutent and Nexavar. Ian and his family are appealing against the ruling and we wish them the very best of luck. But, this should not be a process that a cancer patient should be put through in the first place. It is shameful.
We also have to look at why, if say, Ian Walker did want to fund his medication, the NHS should not continue to fund the remainder of his treatment. It beggars belief that should you actually be able to cover the cost of your cancer drugs the NHS will then refuse to have anything to do with any area of your treatment. If an individual can fund approved drugs when the PCT have run out of funds – which is often the excuse they give for not prescribing Sutent or Nevexar – surely this can only help everyone? Where is the problem, PCT... ?
Our patient survey’s been out there for a little while now and has been a huge success. It promises to yield some very enlightening and vital facts which we will be sharing with the worlds media once dissected by our analyst bods. If you have taken part and not returned or completed your survey, please get it back ASAP. And, it's not too late. If you are a late comer and want to take part, click here to start the process. The data we will be able to glean from the survey is vital in our fight for better care ad treatment for kidney cancer patients across the UK, so thank you to everyone who has taken part thus far.
You may have noticed some changes to our website over the last few months, least of all the missing ‘Forum,’ sorry about that, there will be an announcement about what is happening there very shortly. A major development over the next few months will be the inclusion in our over all mission and support of Wilms Tumour. Wilms Tumour, or nephroblastoma, is a tumour of the kidneys that typically occurs in children, rarely in adults. It takes its name from Dr. Max Wilms, the German surgeon who first discovered the disease. We will have special consultation and support from leading lights who work within the Wilms Tumour field to help us support families affected. We hope to have this incorporated into the site within a month or two.
We have some great supporters raising funds for the fund, Rhodri of course did a sterling job running the London Marathon and from the 31st May to the 2nd June James Blackett and friends will take on the mammoth charity cycle ride from his home in Norfolk to Westminster, London where he will be meet by his local MP Richard Bacon and will be demanding better treatment and care for kidney cancer sufferers like his father David. I wish him a safe journey and The Fund looks forward to cheering him across the line in London.
Meanwhile, are you preparing to get involved with our Britain’s Biggest Curry Party annual event in October? No, well get involved, you’ll have great fun. If you would like to join the fun with a Curry Party of fund raise in our name click on our ‘Support Us’ page, you’ll find information and lots of ideas of how to help there.
Good health to you all.
James Whale.
