Cancer drug hope for brave fireman
Richard Batson A terminal cancer patient has won hope of getting the drugs that could lengthen and improve his life.But retired fireman Barry Humphrey's joy is tempered with frustration at the way the local health authority handled his case.
A terminal cancer patient has won hope of getting the drugs that could lengthen and improve his life.
But retired fireman Barry Humphrey's joy is tempered with frustration at the way the local health authority handled his case.
And a campaigner battling 300 similar cases across the country says she is horrified by the way he was treated - and is calling for other people refused by an NHS Norfolk panel to also have their cases reviewed.
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Mr Humphrey's MP Norman Lamb, who is the Liberal Democrats health spokesman, says the Norfolk case is a nationally-important victory. He is demanding that the local primary care trust now pays for the treatment, and quickly.
Former fireman Mr Humphrey, 59, saved countless lives during 25 years of service in London, but was earlier this year refused funding for Sorafenib, a drug which his doctors said could extend his life during treatment for a rare liver cancer.
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NHS Norfolk said that until such drugs were evaluated by the National Institute for Health and Clinical Excellence, it would only fund exceptions that could prove clinically effective.
The North Walsham man, his family and MP, took their case to two unsuccessful appeals, but eventually got it independently reviewed by the Suffolk health authority, which overturned the decision and recommended funding approval.
The Suffolk panel disagreed with the Norfolk decision, saying Mr Humphrey met the criteria for getting the drug.
It also said the Norfolk panel failed to take into account social and personal circumstances which would have made him an exceptional case.
Mr Humphrey had been caring for his 91-year-old mother, deaf-blind daughter and insulin-dependent wife, who has angina. And it criticised them for poor communication with the patient and his doctors, which saw him wait a month to learn about the original refusal.
Mr Humphrey, who will now get two months of trial treatment worth £5,000 if Norfolk follows the recommended U-turn, said: “We are happy. All I ever asked for was to try a drug doctors say will help me.”
He said the Norfolk PCT would look “really stupid” if it failed to act, and that he was prepared to take the matter to a high court judicial review if necessary.
Mr Lamb said he was demanding that NHS Norfolk made the decision to fund immediately, and calling on the authority to carry out a “fundamental review” following the scandalous delays, lack of openness and poor communication throughout the handling of the case.
Campaigner Kate Spall, who has helped 70 people win drug-funding battles and has another 300 in her pending tray, said she was horrified by the Norfolk case, having “never seen such incompetence” and was concerned that Mr Humphrey had missed out on six months of treatment time.
She asked how many other local cases had suffered similar flawed judgments, and called for a review of all other refusals by the Norfolk panel.
NHS Norfolk refused to reveal if they would now agree Mr Humphrey's funding, how many other cases had been turned down, or answer the criticisms.
A spokesman for its exceptions panel simply said: “We have now received the report and comments from Suffolk PCT in relation to this case and will urgently review the recommendations within it. This matter will be dealt with expediently.”
To contact Kate Spall at the Pamela Northcott Fund, visit www.EDP24.co.uk/dailylinks