Bosses in the National Health Service have refused to administer a drug to a patient with advanced kidney cancer even though the medicine is being provided free.

Barrie Clark, 61, was told in May that he could receive a free supply of a new kidney cancer drug on compassionate grounds from the pharmaceuticals company that makes it.

Clark was then astonished to be told by the NHS that he could not take up the offer at his local hospital because it was against management policy.

He could receive the drug, which has been approved as safe, only by paying for nurses to administer it privately.

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BACKGROUND

• Ministers rethink ban on private drugs in NHS

• ‘We’ve paid into the system all our lives. Why has the NHS turned on us?’

• Doctors' anger at cruelty to patients

• Cancer patients ‘betrayed’ by NHS

• Voters call for end to ban on private drugs

Dying cancer victim was forced to pay

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• Cancer victim told to pay for his own drugs by NHS

• Doctors for Reform fight NHS order to halt cancer care

• Fighting cancer and the ‘unjust’ health service

Related Links

• Banned cancer drugs better than NHS ones

• ‘We’ve paid into the system all our lives. Why has the NHS turned on us?’

Clark is in a similar predicament to patients being denied NHS care if they choose to pay for drugs that the health service does not fund. Campaigners are outraged that the ban on allowing NHS patients to pay for private drugs has now extended to letting them receive additional medicines for free.

In a letter of complaint to NHS Grampian, which runs Aberdeen Royal Infirmary where Clark is being treated, the father of four said: “I have been denied a free drug for a long time when there was no alternative treatment.

“We find this appalling and demand that the drug be offered free of charge immediately. How many other people has this happened to? You have jeopardised my life and caused great anguish to me and my family. That is disgraceful.”

The medicine, temsirolimus, which has the brand name Torisel, was granted a licence for the European Union in November. The European Medicines Agency (EMEA) has ruled that its benefits outweigh the risks. Dozens of NHS patients have received it on compassionate grounds from Wyeth, the manufacturer, in advance of its commercial launch in Britain.

The National Institute of Health and Clinical Excellence (Nice) is assessing whether Torisel is cost-effective enough to be prescribed on the NHS.

Managers at NHS Grampian told Clark that he could not receive it because it was not yet on its list of prescribed drugs, known as the hospital formulary. The trust says it will not be placed on the formulary until it is assessed by Nice or the Scottish Medicines Consortium.

Clark, a manager in the oil industry, has been helped by Kate Spall, a cancer drugs campaigner with the Pamela Northcott Fund.

Spall said: “I have never heard such rubbish. They are saying this medicine cannot be given because it is not on a drug list, but patients elsewhere across the country are getting it. Are we now in a position where a terminally ill patient is denied a free medication?”

Cancer professors dismissed the explanation as “bureaucratic nonsense”. Will Steward, a consultant oncologist at Leicester Royal Infirmary, said: “I really do not understand the decision not to allow a free drug to be administered from the hospital. We do this frequently.

“Many trusts have allowed this in the past and this decision is perverse.”

Jonathan Waxman, a consultant oncologist at the Hammersmith hospital in London, added: “This is an effective treatment. This shows the mess we are now in.” After Clark told the hospital he was going to speak to the media, managers said he could pay to have the drug administered privately. He would need to pay about £1,000 a month as it is taken intravenously.

Clark said that, although appalled at his treatment by the NHS, his own oncologist had done his best. NHS Grampian declined to comment on the individual case.

The Sunday Times has been campaigning to end the ban on NHS patients paying for private drugs that the state does not fund. Last week two patients won appeals to receive cancer drugs on the NHS after they featured in the Sunday Times Right to Pay campaign.

Sheila Norrington, 59, a cancer patient from Maidstone, Kent, was denied NHS care after paying privately for Erbitux, which costs about £3,000 a month. After the paper highlighted her case, the Peggy Wood Foundation, a charity, agreed to pick up the bills, but last week West Kent Primary Care Trust reversed its decision.

Barry Humphrey, 59, from North Walsham, Norfolk, was told that if he paid for Nexavar, the only available treatment for his advanced liver cancer, he would be billed for his NHS care. His local trust refused to fund the drug but neighbouring Suffolk Primary Care Trust has recommended that the NHS should provide it.

The British Medical Association and the NHS Confederation, which represents hospital managers, support a patient’s right to co-pay for cancer drugs without losing NHS care.

Read Sarah-Kate Templeton's articles in the Sunday Times campaign to highlight the plight of cancer patients denied NHS care if they pay privately for a top up medicine:

Private drug helps cancer man left to die

Doctors back top-up drugs

Cancer pair win right for top-up drugs

Banned cancer drugs better than NHS ones

‘We’ve paid into the system all our lives. Why has the NHS turned on us?’

Cancer victim told to pay for his own drugs by NHS

Doctors for Reform fight NHS order to halt cancer care

Fighting cancer and the ‘unjust’ health service

Cancer patients fight to stop NHS withholding care

NHS threat to halt care for cancer patient

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