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'The NHS is full of hard decisions' 'The NHS is full of hard decisions'
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By Adam Wishart Documentary maker Eric Rutherford has a rare cancer called MyelomaBy Adam Wishart Documentary maker Eric Rutherford has a rare cancer called Myeloma
I first met Eric Rutherford as he lay on a couch in his conservatory.I first met Eric Rutherford as he lay on a couch in his conservatory.
Tubes of blood snaked from his arm into the dialysis machine. His wife, Anne, read its screen and pressed the buttons.Tubes of blood snaked from his arm into the dialysis machine. His wife, Anne, read its screen and pressed the buttons.
Minutes earlier she had placed the needles in his arm, wired up the machine and set it running.Minutes earlier she had placed the needles in his arm, wired up the machine and set it running.
Three mornings a week, the 61-year-old former miner endured this treatment.Three mornings a week, the 61-year-old former miner endured this treatment.
For five years he has been living with a rare cancer of the blood plasma called Myeloma.For five years he has been living with a rare cancer of the blood plasma called Myeloma.
"One of the side effects of myeloma is that it wrecks your kidneys, hence the kidney machine," he told me."One of the side effects of myeloma is that it wrecks your kidneys, hence the kidney machine," he told me.
"I love it because it keeps me alive. I hate being on it for four hours.""I love it because it keeps me alive. I hate being on it for four hours."
That was in October last year, and he was worrying about his next treatment for his disease.That was in October last year, and he was worrying about his next treatment for his disease.
He knew that if he relapsed there was a drug, Lenalidomide, that could help, but he was not certain that the NHS would fund it.He knew that if he relapsed there was a drug, Lenalidomide, that could help, but he was not certain that the NHS would fund it.
I've always been angry when you are told you can't have this or that because of cost effectiveness Anne Rutherford, Eric's wife class="" href="http://www.bbc.co.uk/programmes/b00l9dmw">Adam Wishart's The Price of Life is on BBC Two at 9pm on Wednesday 17 June.
The decision did not come down to his doctor but would depend on a judgment made by the National Institute for Health and Clinical Excellence (NICE), the body which advises the health service about new drugs.The decision did not come down to his doctor but would depend on a judgment made by the National Institute for Health and Clinical Excellence (NICE), the body which advises the health service about new drugs.
I filmed him for my BBC documentary about NICE.I filmed him for my BBC documentary about NICE.
As he worried about his advancing cancer, it seemed cruel that his fate would hang on the outcome of a committee meeting of a government quango.As he worried about his advancing cancer, it seemed cruel that his fate would hang on the outcome of a committee meeting of a government quango.
But Eric and Anne were already hardened fighters. Their home had been adapted, thanks to grants Anne had fought out of the local council.But Eric and Anne were already hardened fighters. Their home had been adapted, thanks to grants Anne had fought out of the local council.
And previously, Eric had been prescribed Velcade - a drug that they and other Myeloma patients had already had to campaign for.And previously, Eric had been prescribed Velcade - a drug that they and other Myeloma patients had already had to campaign for.
In October, NICE announced that it had determined that the cost of Lenalidomide was too much compared to the benefits that it gave.In October, NICE announced that it had determined that the cost of Lenalidomide was too much compared to the benefits that it gave.
The best evidence was that it delayed the disease from progressing for six months. But the cost to the NHS was about £50,000 per patient per year.The best evidence was that it delayed the disease from progressing for six months. But the cost to the NHS was about £50,000 per patient per year.
I've always been angry when you are told you can't have this or that because of cost effectiveness Anne Rutherford, Eric's wife
NewsNews
The news was hard on Eric and Anne. "It's very disturbing, because I am denied this drug," Eric told me.The news was hard on Eric and Anne. "It's very disturbing, because I am denied this drug," Eric told me.
"If things don't go well, then I've got no where else to go. It isn't because that they have said no."If things don't go well, then I've got no where else to go. It isn't because that they have said no.
"It is knowing that there is something out there that you're denied it."It is knowing that there is something out there that you're denied it.
"That is what hurts. That really hurts.""That is what hurts. That really hurts."
Anne was upset. "I'm angry. I have always been angry when you are told you can't have this or that because of cost effectiveness."Anne was upset. "I'm angry. I have always been angry when you are told you can't have this or that because of cost effectiveness."
Their reaction was to fight. Anne wrote emails, and badgered NICE for information. She and Eric also travelled to Britain Against Cancer, a conference organised by the All Party Committee Against Cancer.Their reaction was to fight. Anne wrote emails, and badgered NICE for information. She and Eric also travelled to Britain Against Cancer, a conference organised by the All Party Committee Against Cancer.
In front of 500 people, Anne asked health minister Ann Keen if she supported the appraisals which discriminate against the elderly and those with disability.In front of 500 people, Anne asked health minister Ann Keen if she supported the appraisals which discriminate against the elderly and those with disability.
In the end, the campaigning by Anne and Eric, their patient group Myeloma UK and other patient groups did have an effect.In the end, the campaigning by Anne and Eric, their patient group Myeloma UK and other patient groups did have an effect.
You get tired of writing to people, of writing to MPs Anne Rutherford
In November, Health Secretary Alan Johnson announced that NICE was changing its rules so that it would look more sympathetically on drugs for patients in terminal disease.In November, Health Secretary Alan Johnson announced that NICE was changing its rules so that it would look more sympathetically on drugs for patients in terminal disease.
"We're optimistic," Eric told me. "This was so unexpected it caught us unawares. If it helps one person it is worth having.""We're optimistic," Eric told me. "This was so unexpected it caught us unawares. If it helps one person it is worth having."
You get tired of writing to people, of writing to MPs Anne Rutherford
Despite the change of rules, the fate of Lenalidomide still hung in the balance as a NICE committee had to make a final decision.Despite the change of rules, the fate of Lenalidomide still hung in the balance as a NICE committee had to make a final decision.
In January, they met, determining that the NHS must purchase the drug for all patients that need it because of the new rules announced by the minister.In January, they met, determining that the NHS must purchase the drug for all patients that need it because of the new rules announced by the minister.
Anne and Eric were elated to here the news and it means next time Eric goes into relapse he will be prescribed the treatment.Anne and Eric were elated to here the news and it means next time Eric goes into relapse he will be prescribed the treatment.
"Thank god. Another chance. There is something there for him," said Anne."Thank god. Another chance. There is something there for him," said Anne.
"We don't have to fight anyone anymore to help get this drug that might help me live another two years," he said."We don't have to fight anyone anymore to help get this drug that might help me live another two years," he said.
"You get tired of writing to people, of writing to MPs. To know it is there is brilliant.""You get tired of writing to people, of writing to MPs. To know it is there is brilliant."
This is great news for these patients. But it will cost the NHS £45m for a mere 1,200 patients.This is great news for these patients. But it will cost the NHS £45m for a mere 1,200 patients.
The trouble is that what I have learnt in the making of this documentary is that that money will have to be taken from other services.The trouble is that what I have learnt in the making of this documentary is that that money will have to be taken from other services.
And across the NHS there is enormous unmet need.And across the NHS there is enormous unmet need.
The decision for Lenalidomide will necessarily mean that investment will be cut in services for palliative care, to prevent the deaths of tiny babies, and to help patients with chronic diseases.The decision for Lenalidomide will necessarily mean that investment will be cut in services for palliative care, to prevent the deaths of tiny babies, and to help patients with chronic diseases.
While I sympathise with Eric and Anne and the other patients, I think it is important for us all to realise that there is a fixed amount of money for health spending and that it is right that institutions like NICE make hard decisions about where it should be spent.While I sympathise with Eric and Anne and the other patients, I think it is important for us all to realise that there is a fixed amount of money for health spending and that it is right that institutions like NICE make hard decisions about where it should be spent.
Adam Wishart's documentary, The Price of Life, is on BBC Two at 9pm on Wednesday.