After serving in the Royal Navy for almost 40 years and working his way up from the lower decks to become a lieutenant commander, Lionel Winston was putting away some money so that he and his wife Diane could enjoy their retirement.

The Winstons had hoped to spend their savings visiting Dominica in the Windward Islands, where Lionel was born, with their sons Sonny, 30, and Tel, 28, and their grandchildren. They had also looked forward to enjoying treats that they had not been able to afford during their working lives, such as going out for meals.

In October 2006, however, Diane, 52, a former healthcare assistant, was diagnosed with kidney cancer. She went through the early stages of treatment and had the diseased organ removed.

Doctors told the Winstons late last year that the drug that could give her the best chance of survival was only available privately. The couple were prepared to spend all their savings on the medicine. They also organised craft fairs and sponsored runs to raise cash to fund future supplies.

The couple, from Gosport, Hampshire, were not prepared for the next blow, however. Doctors told them that because they had chosen to pay for the drug, Nexavar, they would have the remainder of their free National Health Service care withdrawn. They are now faced with bills for every scan, blood test and appointment with a consultant.

Diane Winston will soon undergo a series of scans at an estimated cost of £800 each, adding to the £3,000 that they pay for Nexavar each month.

The Winstons, like dozens of others, are victims of a government policy which dictates that cancer patients who pay for drugs not funded by the state must be denied free NHS care.

Lionel Winston, 57, said: “If we choose to pay for a medicine that is licensed but is not yet approved by Nice [the government’s drug-rationing body], I do not see why the NHS should turn on us and say, ‘You will need to pay for the rest of your NHS care as well’.

“We have paid into the system all our lives and I feel let down. This is almost saying to people like us, ‘You have chosen to help yourselves, therefore we are going to penalise you for that’. I am absolutely disgusted by it.”

Since last December, The Sunday Times has been campaigning to change government policy so that patients like Diane Winston can pay for the cancer drugs that consultants recommend without the NHS hitting them with a bill for the rest of their care. The campaign, which has been backed by a group of almost 1,000 leading doctors, called Doctors for Reform, last week won the support of the medical establishment.

On Wednesday the annual consultants’ conference of the British Medical Association (BMA) voted to allow NHS patients to top up their care in this way through so-called “co-payments”.

The presidents of the Royal Society of Medicine and the Royal College of Surgeons have also criticised the government’s policy.

Ministers are under increasing pressure to change the policy. Last weekend David Cameron, the Conservative leader, said he was “tempted” to support co-payments.

What is at the root of the issue and why are ministers defending the policy so vigorously?

THE problem has arisen because numerous cancer medicines have been approved by the drug-licensing authorities as safe and effective, but the NHS has refused to fund them.

According to Nice, these medicines are not “cost effective” – considered good value for the taxpayer in terms of the cost versus the typical outcome of the treatment.

Meanwhile, cancer specialists point to clinical trials showing many drugs that are not Nice-approved can prolong patients’ lives. These include Sutent for kidney cancer, Erbitux for bowel cancer and Avastin for bowel and breast cancer. The doctors feel they must tell the patients about the most promising therapy, but know that these drugs can cost up to £30,000 a year.

For those faced with a terminal illness, this seems a price worth paying. Many patients are prepared to cash in their savings or remortgage their homes to buy life-prolonging medicines. Some, like the Winstons, embark on fundraising.

Yet the government’s policy of charging patients for basic NHS care, if they choose to co-pay, can more than double their bills. This can cause huge anxiety among people who should be using all their energy to fight their illness.

The government defends its stance as one of principle. Alan Johnson, the health secretary, argues that allowing co-payments would create a two-tier health service, with patients in adjacent beds on the same ward being prescribed different cancer drugs depending on their ability to pay. He told parliament this would hasten “the end of the founding principles of the NHS” – that patients should be treated privately or publicly, but not both.

Doctors argue that co-payments are already commonplace in the NHS and elsewhere in the public sector.

NHS dentists routinely offer patients a choice between an amalgam filling covered by the health service or a private white filling. Patients are also offered a choice between NHS and private mouth guards to prevent teeth grinding.

Last week Gordon Matthews, a consultant orthopaedic surgeon in Buckinghamshire, told the BMA conference that he regularly treats patients for sports injuries who pay for physiotherapy or sports braces privately. In addition, some NHS hospitals allow women to pay to secure a one-to-one midwife during labour.

Critics also point out that parents pay for their state-educated children to receive private tuition without the pupils being banned from school.

Some doctors and health charities fear, however, that if co-payments were allowed, the government would have an excuse not to fund expensive cancer drugs.

Yet others argue that Britain should be doing whatever it can to improve what are among the worst cancer survival rates in Europe – which is partly the result of patients not having access to the most advanced medicines quickly enough.

The latest statistics, covering 2000-2, show that only 8% of English patients with lung cancer are alive after five years, compared with 16% of patients in Belgium and 15% of patients in Germany. Similarly, 17% of stomach cancer patients are alive after five years, compared with 33% in Belgium and 31% in Germany.

For many cancer patients, the co-payments campaign has come too late. Last week it emerged that two more patients have died while fighting for the right to pay for a cancer medicine without their NHS care being withdrawn.

John Burrell, a retired financial adviser from the Isle of Wight, died on May 18 from kidney cancer at the age of 63.

He was told in his dying months that he would be denied NHS care because his family chose to pay for the drug Sutent, which doctors told him would give him the best chance of fighting the cancer.

His daughter, Kate Tasquier, 36, said: “The consultant told my dad he would be billed for all of his treatment such as blood tests and scans. My dad was so worried about that.” At one point he was so concerned that he was reluctant to go to hospital for treatment.

The whole island was so moved by Burrell’s predicament that residents raised funds to help to pay for his medicines.

Sandra Baker, who was 62 when she died in May last year, was denied state-funded care after she chose to pay for the drug Avastin, which NHS doctors said would aid her chances of survival.

Baker, a secretary from Wargrave, Berkshire, and her husband Peter were forced to spend about £16,000 on treatment in her dying months, in addition to the £9,500 bill for Avastin.

Peter Baker, 66, a retired engineer, said: “We both worked hard all our lives and had given a lot into the NHS.”

NEWS of these deaths has emerged following the tragedy, highlighted by The Sunday Times last week, of Linda O’Boyle, from Billericay, Essex, who died aged 64 after being denied NHS treatment in her final months because she chose to pay for the drug cetuximab.

At least six patients have launched a legal action to trigger a test case to force the NHS to allow them to top up their care with private drugs.

Melissa Worth, a solicitor at the law firm Halliwells, who is representing the patients, said three of the cases would shortly prompt a judicial review of the government ban. She said there was no legal reason why patients should not co-pay.

“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,” she said.

“There are scans, the cost of administration of the chemotherapy, the radiotherapy, the consultations with doctors and the blood tests.”

Some NHS trusts are so keen to avoid a public outcry over the policy that when cases have been highlighted in the media they have agreed to pay for all of the patients’ treatment, including the drug that the cancer sufferers were prepared to pay for themselves.

An indication of defiance in the medical community is the action of doctors in Birmingham who are finding a way round the ban. About 16 oncologists at University Hospital Birmingham NHS Foundation Trust are writing prescriptions for their patients to receive private cancer drugs at home.

The patients have the drugs administered to them by nurses from a private company in their homes and do not write cheques to the NHS hospital. So far managers have overlooked the anomaly.

Professor Nick James, one of the Birmingham doctors, said they had defied the ban because they believe the government is being “vindictive” towards patients who wish to pay to improve their chances.

“There is no question of us turning away these patients,” he said. “I believe that to do so is punitive and vindictive. We remain responsible for the NHS care of these patients.”

This week the campaign to allow patients to top up their cancer care will gather pace. John Baron MP, a former Conservative shadow health minister, will lead a debate in the House of Commons demanding that the ban on co-payments is lifted.

In addition, Frank Field, a Labour MP and respected former welfare minister, has tabled an early-day motion, asking for cancer sufferers to “be encouraged, and then not penalised, to pay for additional drugs which are prescribed for them by their NHS consultant but are not made available to them on NHS prescriptions”.

The NHS Confederation, which represents hospital chief executives, is also consulting its members about how to resolve the crisis.

Meanwhile, the Winstons will continue to raise funds to pay for private supplies of Nexavar for Diane, while hoping that the bills for her basic NHS care will not mount up.

Lionel Winston said: “In a few weeks Diane will need to have scans to see how she has responded to the drug. We believe the scans will cost about £800 each.

He added: “We don’t want to be rewarded for buying the drug – we just don’t want to be penalised.”

What are co-payments? And why is the government against them?

What is co-payment?

Co-payment allows National Health Service patients to pay privately for medicines or treatments that are not routinely funded by the health service, without losing their entitlement to state-funded care.

Why has the government banned it?

Ministers say it would result in a “two-tier” health service because patients on the same NHS ward with the same condition could be given different treatments based on their ability to pay.

Government guidance states that patients must accept the drugs that are provided by the NHS, or pay for all their care privately, thus incurring bills that can run into tens of thousands of pounds.

It is a particular issue for cancer patients where new drugs are being developed all the time.

Why won’t the NHS pay for the extra drugs?

The NHS does not routinely fund certain advanced drugs because they may not have been approved by Nice, the body that gives the go-ahead for NHS treatments. Nice decides what drugs offer value for money to the taxpayer.

The advanced drugs include Sutent and Nexavar for kidney cancer, Erbitux for bowel cancer, Avastin for breast and bowel cancer, and Tarceva for lung cancer.

A course of one of these cancer medicines can cost more than £30,000 a year.

Can private insurance pay for the drugs?

Yes, they are usually covered under conventional medical insurance policies. WPA. a medical insurance company, has also brought out a policy to cover cancer medicines that the NHS does not routinely provide. The policy, called mycancerdrugs, offers insurance for expensive medicines from £55 a year.

How many people are involved?

The Sunday Times has already featured reports on eight cancer patients who have battled to co-pay for their medicines since we broke the story last December. An additional four patients are known to be taking legal action.

Rose Woodward of the Kidney Cancer Support Network is aware of about 120 kidney cancer patients who may wish to co-pay for medicines.

Doctors estimate that thousands of patients in total could be affected.

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