05-Aug-2007 VJ & SH
From Kidney Cancer Resource
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05-Aug-2007 - Presentation to PCT
This is the text of the presentation made by Val Jones supported by her daughter Kathleen and also Susan Howe to Warwickshire PCT after forcing their way into the PCT Board meeting.
We are reliably advised it was a full sitting of the Warwickshire PCT chaired by Mr. Stoten with the only members of this QUANGO not present to hear this presentation and receive a printed copy were a Mr. Rose & a Mr. Tim Davis who had offered their excuses for failing to attend.
The presentation given was verbatim as follows:
To the Board (of Warwickshire PCT)
We make no excuses or apologies for standing here today and requesting your attention. We understand that Primary Care Trusts are responsible for improving the health of their local population. Alas, in Warwickshire this does not appear to be the case and we represent our husbands, both of whom have been denied life sustaining drugs by this Primary Care Trust.
My husband, Anthony Russell Jones suffers from an extremely rare form of stomach cancer called GIST (Gastro –Intestinal Stromal Tumour) When he became resistant to the front line drug, Glivec, he became suddenly very ill and his oncologist indicated that he had just weeks to live if he could not access other treatment. In these circumstances the next line of treatment is a drug called Sutent. Every expert of GIST in the world agrees that this drug should be given routinely when a patient becomes resistant to Glivec. This happens in every developed country in the world with the exception of the UK. Fortunately most PCTs who have been approached for this drug in recent months have followed the advice of the health experts and allowed access to this drug often without the need for an individual case panel. Recently there have been only nine such applications in England and Wales and seven have been successful. Only my husband and a gentleman in Bromley have been denied this drug. Is this not postcode lottery at its very worst?
The first letter that my husband received denying him the drug was patronising and insulting. The author wrote to my husband, a retired headmaster, as if he were a rather simple child asking if he realised that Sutent had side effects. The second letter he received was so badly written and so contradictory in its content that it was difficult to make any sense of it. The main message seemed to be that the panel had made up its mind not to fund the drug before the Individual Case Panel meeting as prolonging my husband’s life was considered of ‘small impact.’ We wrote requesting an appeal four weeks ago and have still not been given a date for the appeal. If my husband was waiting for your decision before he could access the drug, he would have died by now. You have decided to act as judge and jury and have totally disregarded the expert opinion of my husband’s consultant, who does have some knowledge and expertise in this very rare and complex illness. I know with absolute certainly that no-one on the panel has any knowledge of, or experience with GIST at all.
Colin Howe has advanced kidney cancer and was diagnosed in August 2005. He had an operation to remove his left kidney and a further operation in 2006 to remove half of his pancreas, part of his diaphragm, his spleen and several tumours in the renal bed and against all the odds he still has a good quality of life. This particular cancer is resistant to both chemotherapy and radiotherapy and there are only two options for treatment. He had a three month course of Interferon that was not helpful and Sutent is the only other option that he has to prolong his life.
Funding has been refused by this PCT and he now has to appeal to the Individual Case Panel to prove exceptionality. He has waited three months for the PCT to process his case and in the meantime Colin has received no treatment. In Birmingham, less than 30miles away, patients are receiving Sutent. This all comes down to funding and living in the wrong postcode. Colin is only 47 years old and deserves this treatment to give him a chance- a chance to see his family grow up! Only you can give him this chance.
Up to 70 trusts in England are now funding this treatment for people in Colin’s situation and we recently heard that entire North East Strategic Health Authority covering 13 PCT’s have combined together to allow immediate access to this drug. Again, this is another case of postcode lottery! In a civilised country surely location should not determine that someone dies sooner than they need. Colin and Russ feel that they have been abandoned by the National Health Service that promised to nurture them from the cradle to the grave. We want our husbands to have the same treatment that you would expect your loved ones to have!
We were appalled to learn that Mr Rose is planning to spend public money employing a public relations company to help the PCT handle the media interest when they refuse drugs to patients. In other words, your image is more important than patients’ lives. We want the people of Warwickshire to know this.
You had all the information to make the right decisions in the right way - instead you chose the path of obstruction, cowardice and legalised killing. Shame on you all. Your patient led, patient centred NHS is a sham and we are prepared to shout from every roof top and name and shame the so called public servants who have acted with an absolute disregard for very people they should be serving. The people of Warwickshire deserve better and should be aware of the way you have written off the lives of two men. I would request that the Chief Executive and Chair of the Board telephone our husbands tomorrow morning and tell them yourselves what you decide. We always believed the role of the NHS was to save lives - how wrong we were.
Comments
Hi Everyone
Just to update you all on our latest events.
Today myself and another lady called Val Jones whose husband also needs the drug Sutent interupted a meeting of the Board of Trustees of Warwickshire PCT. We stood together in front of a board of 16 members and the statement attached was read out by Val. Each board member also had handed to them a copy of the statement. The board members lowered their heads and avoided any eye contact until the part about them employing a PR company to make themselves look better when refusing patients the drug they need.
On Sunday evening last week we found out that they had employed a PR company to help them with the media interest concerning two individual patients requesting a cancer drug. (Colin Howe and Russ Jones) Little did they know that we would find out and make this public knowledge that they were spending public money on employing this company instead of giving the money to fund the drugs. What a PR disaster that was for them!!!!!!!!!!!
Today went extremely well and after reading the statement we left the room before they had time to make their reply. We had however left our press guys behind to cover their reactions, three newspapers turned up to support us and two photographers.
We are now waiting to see what their response may be! We already have an article going into the national Times newspaper hopefully on Monday (may be the following week). This is going to be a feature article in the Times 2 mazagine. We also believe some of the national papers will now pick up the story of our interupting the PCT meeting.
You get all the latest news on Sutent by googling news.google.com and then type into the search box Sutent this will bring up any news nationwide covering the latest news including ours should we hit the papers.
Best wishes Susan
Susan Howe
Colin Howe Cancer Care Appeal: www.colinhowe.org
06-Aug-2007 Greg L-W.
My personal congratulations to Val & Susan and thanks to others who have helped them with support, media coverage,data, political assistance and publicity including Ken & Peter and others at The Rugby Advertiser, Barbara Lantin writing for The Times, some members of kcUKForum JWFForum and other Kidney Cancer paients and relatives also Chris Heaton-Harris MEP & many others.
Chris Heaton-Harris MEP their representative is raising the issue in The EUropean soviet to seek to enforce anti discrimination laws that should protect people against the devolved irresponsibility of regional decision making by QUANGOs discriminating on a Post Code Lottery basis. He contends that there is no difference in discrimination be it based on gender, race, creed, colour or need when differentiated by Post Code!
www.KidneyCancerResource.com aims to give informative factual coverage and opinion is confined to Comments and The User Forum which can be accessed from the left side menue near the top. For additional information you can find my contact details at User: Greg L-W.
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