Daily Mail (KC) 10-May-08

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How the NHS is letting my father die - by a top hospital consultant

By SARAH ANDERSON - More by this author »

Eye specialist Sarah Anderson works at York Hospital. Her father Ian has been refused Sutent, a new cancer drug, which could provide the only real chance of prolonging his life. Sarah, 40, lives in York with husband, Bill, a computer programmer and their twins, Douglas and Ryan, five.

As an ophthalmologist, I have spent my working life in the NHS. And for all its perceived failings, I have been proud of its fundamental role in our society - to provide equality of care for all.

Of course, I've heard the term postcode lottery but as a doctor I've only ever provided my patients with the best course of treatment available.

So when I've read about people being refused particular drugs simply because of where they lived, I've always believed there must be another reason - even if it wasn't immediately obvious at the time.

I never for a moment thought that a life could be decided by something as arbitrary as one's address.

Injustice: Sarah Anderson is furious that her father's Primary Care Trust will not fund Sutent

Yet that is what has happened to my father. And it is only now, sitting on the side of the patient, that I have seen the injustice inherent in our system and the devastation it can cause.

Ian & Mary Walker

A year ago, Dad was a happy, active 68-year-old, living in Newbury, Berkshire, with my Mum, Mary.

A former electrical engineer, in his spare time he helped build the replica Bombe - the machine used by the British to break the German Enigma codes during the Second World War.

Then, last summer, he began to feel a little off-colour. At first he was tired, then he stopped eating. By the autumn he didn't even have the energy to walk his Jack Russell dog.

In October we discovered the reason why. Dad had a large tumour on his kidneys.

It was explained that the kidney could be removed but the cancer may have spread and that chemotherapy and radiotherapy do not work for this type of cancer.

It was therefore a great relief when he was told that research had shown that a new drug, Sutent, can give a glimmer of hope and that his consultant had already used the drug to help other patients.

And he was further reassured that even though the drug had not yet been assessed by NICE (the National Institute of Clinical Excellence), his Primary Care Trust (PCT) had funded its use for seven patients in the past year.

Powerless: Sarah's father Ian with his wife Mary

My father then underwent major surgery to remove his kidney. It was found that there was still some cancer left and that it may have spread to his lungs.

His consultant told him they would apply for Sutent to be funded.

Imagine his surprise when he was told that West Berkshire PCT would no longer fund that treatment because of a change in policy.

His only option was to go on Interferon Alpha, an old drug his consultant does not think is as effective as Sutent. It also has significant side effects.

My father was left with two options: to die early, or spend the rest of his life on a drug that is likely to make his life not worth living.

The predicament was made even worse as my father had made a brilliant recovery from the surgery and he wanted to live as healthy a life as possible, free of the horrible side effects of Alpha Interferon, which makes you feel as if you have flu.

Would you like to spend the rest of your life with a bout of flu? It's not a tempting prospect.

As someone who works on the basis that each patient should have the care they need regardless of their ability to pay, I believed - naively - that this was simply an aberration.

I thought there would be something we could do to remedy the situation.

I contacted a kidney cancer support group and it was only then that I realised how many other people are in the same forbidding situation.

Although Sutent has been licensed in Europe since 2006, NICE has yet to decide whether it is effective enough to warrant the cost to the NHS.

It is not due to pass judgment until next January, and in the meantime each PCT is entitled to form their own policy on its use.

Tony Wilson, the former boss of Factory Records who died last August, was refused Sutent. Last September, Chris Heaton-Harris, Tory MEP for East Midlands, asked the European Commission to look into the case of Russ Jones, a former headteacher who is using his lifesavings to fund the drug.

And last month, Jean Murphy, a 62-year-old grandmother from Salford, Manchester, said that the refusal of her PCT to fund Sutent was tantamount to manslaughter.

Of the 3,100 patients a year who discover that they have advanced kidney cancer, fewer than 200 have succeeded in getting funding from their PCT.

This is despite a head-to-head clinical trial comparing Sutent with Alpha Interferon, which showed a doubling of the time it took the cancer to get worse in patients on Sutent, with more than 30 per cent of patients responding, compared with six per cent on Alpha Interferon.

So far, 35 PCTs have agreed to fund Sutent, yet almost twice as many have decided to wriggle out of paying the extra cost.

Alpha Interferon costs about £600 a month, while a trial of Sutent is just over £1,100 a month increasing to £2,200 if it is successful, as the drug company helps with the cost for the first three months.

If the drug does not work it is no longer given. Obviously, if it works the costs are greater and ongoing - a fact that seems strangely unpalatable to the NHS.

It is, in fact, illegal for a PCT to say it will never pay for a patient to have a particular treatment, but at least 65 trusts in England have decreed that the consultant has to show that the patient has "exceptional circumstances" before they will allow funding for Sutent.

Given that "exceptional" remains open to interpretation, it is impossible to predict in which cases the PCT might pay for treatment.

Certainly, when my father asked West Berkshire about this they couldn't give him any rules which decided who would be regarded as "exceptional".

Yet whose life isn't exceptional? Certainly, being told that you are "not exceptional" can have a dreadful effect. A man in Eastbourne committed suicide last year when he was refused the drug.

You might ask why we do not fund the drug ourselves? My sister, Fiona Walker, is a successful novelist and our family is lucky in that we could manage to find the monthly cost of the drug and offered to do so.

Yet the NHS told us that if we pay for the drug the NHS will not pay for any of his care. All blood tests, scans and doctors' visits will have to be paid for as well. The NHS will wash its hands of him.

Worse, if the drug works and he lives so long that we run out of money and he must become an NHS patient again, the drug will be withdrawn from him so that nature can take its course.

There is nothing to stop the PCTs changing their policy before the NICE guidance on Sutent is published next January.

They can provide this drug if they want to. That they won't is not just unfair, it is cruel.

If Dad should lose his life to cancer, it would be devastating but to lose his life to bureaucracy would be far, far worse.

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See Also SundaySun (KC) 18-May-08

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