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Nice Can Be Nasty


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NICE (The National Institute for Clinical Excellence) says if patients can or can't receive new, life-enhancing drugs.

NICE says if your NHS doctor or Consultant is allowed to prescribe drugs. These same drugs are freely given to patients in Europe, but NICE drags its heels when going through the approval process in Britain (one wonders why?).

Recently the Daily Mail had a story that NICE had paid top PR company Webber Shandwick a fee big enough to give 5,000 Alzheimer's patients their £2.50 a day drug for one year - or nearly 200 kidney patients get the drugs they would be automatically be given in Europe to help extend their lives. In all, the Mail claimed that the PR budget was £4.5 million, but NICE spent £3.5 million on approving drugs.

Most would agree the £3.5 million spend - but the £4.5 million? To give another Government agency a ‘nicer’ PR spin profile? Isn't it about time the NHS realised that we need medical care, not customer experiences?

In saying which drugs can be administered to patients, and paid for by the NHS, NICE's website says it gives “guidance on . . . treating ill health", but - there is a sting in the tail - it “provides cost- effective templates" for those drugs.

As a result, cancer patients have had potential life-saving or life-prolonging drugs withheld from them, and in many cases have had to go to court to obtain these - even though these drugs are already licensed for prescribing in Europe, where cancer treatment is far better handled than in Britain.

Sutent (Sunitinib) is one of those drugs; a type of anti-cancer drug known as multi-targeted receptor tyrosine kinase (RTK) inhibitors.

Professor John Wagstaff, Professor and Honorary Consultant in Medical Oncology, South Wales Cancer Institute, Swansea has said “sunitinib is producing a remarkable effect on survival for patients with this difficult-to-treat cancer, and clearly confirm the role of sunitinib as the first line treatment of choice. "

Patient Jean Murphy had been told Sutent would help shrink her tumour, but Salford Primary Care Trust has just spent more than £17,000 in legal costs battling the 63 year-old cancer patient. She had the incredible ordeal of having to go to Court, in a frail state of health, to force the Trust to allow her this drug, even though the original cost of the drug would have been £10,000. Under the Freedom of Information Act, Salford PCT had to disclose the fees they had paid solicitors to defend their action in court, although the sums given out didn't include staff or executive time.

Across Britain, PCTs use the term ‘Qualies’ to assess drug suitability (i. e. what will it cost?) “Qualies" stands for Quality of Life, and a team assesses each case before deciding if the patient will gain this mysterious ‘qualie’ if given the drug. Attending a meeting at the Department of Health, we all gasped as one of these “qualie" merchants explained, in the baldest terms possible, how they assessed patients. When turning down an application, it seemed to depend on what panel members thought was an allowable ‘qualie’ rather than the same rules guaranteeing everyone the same treatment. At least that would be fairer, and cut down the post-code lottery when issuing drugs.

Yet many PCTs recently voted to spend upwards of £6,000 changing their names. Believing the public doesn't understand PCT, the name has been changed to NHS PCT (Primary Care Trust). There are 152 of these trusts, and frankly, one doubts if the average patient would care what they are called. Patients want value for money, and paying for name changes or Public Relations doesn't figure in their priorities.

With many patients backed by charities set up to fight their case for them, or the pharmaceutical company making the drug funding a court case, patients and PCTs are bracing themselves for another round of court appearances. The NHS is fighting ‘middle Britain', unhappy at the way that drug funding is allocated - and believing it should be fairer. So many would like to shout about their treatment from the rooftops, but there is an inbuilt fear. As one told me, “if I say anything, dear, they might withdraw all my treatment and make me pay for medicines".

Sunitinib may help to stop cancers from growing and spreading by inhibiting these processes both of which are implicated in tumour growth. So how many more patients will have the ordeal of going to court to plead for a drug - when, if they lived in Europe, they would get it automatically? And live longer; Europe's post cancer survival rate is far better than Britain's.

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