Sufferers threatened with the loss of all treatment if they ‘top up’ their care with private drugs tell The Sunday Times of their anguish

When Richard Eckley was diagnosed with kidney cancer, doctors offered him an unenviable choice.

If he stayed with the NHS, he would be offered a drug giving him a one in six chance of beating the cancer. If he was willing to pay, he would receive a drug that would double his chances of survival — but he would lose the remainder of his NHS cancer care.

Eckley, 68, a working farmer from Hay-on-Wye, Herefordshire chose the second option and has been denied consultant appointments, scans and blood tests on the NHS.

His wife Barbara, 69, said: “Once you pay privately for the drug, you have to pay privately for everything else as well.

“We feel very disappointed that, after we have paid all this money into the health service [in tax], it is not there for us when we need it.”

A spokeswoman for Gloucestershire Hospitals NHS Foundation Trust, which has withdrawn state-funded treatment from Eckley, said: “While we sympathise with Mr Eckley’s situation, we are bound by [government] guidelines.”

For the past four months, Eckley has raised enough funding to meet the monthly bill of £4,000 for the drug Sutent and the rest of his care, but does not know how much longer he can do so. He has resorted to asking his daughter, Jane Thursfield, a nurse, to take his blood tests to keep costs down.

He is one of six cancer patients who are taking legal action against the NHS for denying them the right to pay for extra medicines without having the rest of their treatment withdrawn.

Another patient is Jack Hose, 71, from Bournemouth, whose entitlement to health service care was withdrawn by the Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust because he chose to pay for a drug that is not normally funded by the state. Hose has been billed by the trust for £11,500.

Hose said: “It seems outrageous that, having paid national insurance contributions for 50 years, they are now asking me to pay for my care.”

The NHS has agreed to pay for all of Hose’s treatment after his predicament was highlighted by The Sunday Times last week.

A woman with liver cancer is taking legal action against Weston Area Health NHS Trust in Somerset after bosses refused her request to pay for the drug Avastin privately.

Another woman, with bowel cancer, has launched legal action against Velindre NHS Trust in Cardiff after it refused her request to pay for the same drug. These cases are on the verge of prompting a judicial review of the NHS policy.

Melissa Worth, a solicitor at the law firm Halliwells who is representing the patients, said: “My clients can, at a push, get the resources together to pay for the drugs but they cannot afford to pay for all the care associated with the cancer. There are scans, the cost of the administration of the chemotherapy, the radiotherapy, the consultation with doctors and the blood tests.”

The row about co-payment began last December when this newspaper reported the case of Colette Mills, a breast cancer sufferer from Stokesley, North Yorkshire, who was told that if she topped up her medication with privately bought drugs she would have to pay for her entire treatment, some £10,000 a month.

Mills was taking legal action to pay privately for the drug Avastin but the cancer spread to her brain and it is now too late for her to benefit from it.

“I just cannot believe people make these decisions about other people’s lives,” she said. “It wasn’t going to cost them. I was going to pay for it. How can they say this policy is far more important than somebody’s life?”

Linda O’Boyle, from Billericay, Essex, has become the first patient known to have died after fighting for the right to co-pay for a cancer drug. Her husband, Brian, who spent 30 years as an NHS manager, is distraught that she also had to cope with money worries during the final months of her life.

He said: “I felt quite upset about it. We were connected with the health service all our lives. We were quite happy to pay for the drug and to give the health service what it costs them to buy it and to deliver the treatment, but they said they could not do that.”

Southend University Hospital NHS Foundation Trust, where O’Boyle was treated, has a policy of not allowing patients to have private and NHS treatment at the same time.

Alan Johnson, the health secretary, says the government policy of denying NHS treatment to patients who pay for private medicines is necessary to prevent a two-tier NHS, with those receiving top-up medicines being treated on the same ward as those who must make do with standard health service medicines.

In a statement to parliament, Johnson said: “A founding principle of the NHS . . . is that someone is either a private patient or an NHS patient.”

However, Nigel Griffin QC argues there is nothing to stop a patient receiving both private and state treatment for the same condition at the same time. “It would be impermissible for an NHS body to refuse treatment in such circumstances merely on account of philosophy,” he said.

Britain has among the worst cancer survival rates in Europe and doctors argue that the policy of denying NHS patients the right to buy the most effective drugs is contributing to that record.

Dr Christoph Lees, a member of the Doctors for Reform steering group of almost 1,000 doctors who have raised £35,000 to challenge the government ban on “top-up” medicines in the NHS, said: “New cancer medicines are converting the disease from a condition that you might die from to one you might live with for years — often with a good quality of life.

“As it is currently funded, the NHS is unlikely to be able to afford many new and expensive drugs.”

Many NHS trusts have been so eager to avoid putting the issue of co-payment to the legal test that they have quietly agreed to fund cancer drugs that they previously ruled would be unavailable.

The Royal Cornwall Hospitals NHS Trust allowed three patients to top up their NHS care by paying for private medicines before the government guidance was issued last year.

After receiving the government guidance, the Cornwall trust was forced to tell a breast cancer patient, Debbie Hirst, 56, from St Ives, that she could not pay for Avastin alongside the other medicines she was prescribed on the NHS.

After Hirst’s case was raised by The Sunday Times, the trust agreed to pay for the drug.