A LIEUTENANT-COMMANDER awarded an MBE for services to the Royal Navy is preparing to hand back his decoration in protest after his terminally ill wife had her free NHS cancer care withdrawn for buying a drug privately.

Diane Winston, 53, who has kidney cancer, is being billed by her local trust for all her NHS care, including scans and hospital appointments, after paying privately for the drug Nexavar, which her health service consultant recommended.

Winston’s husband, Lionel, 57, is so disappointed at the way his wife has been treated that he is prepared to give up the MBE, which he hangs with pride on his wall.

“If this situation is not changed, in protest, I will formally return my MBE,” said Lionel.

“I am so disgusted by the government, and the nation that I have given the last 37 years of my life to, and for which they have awarded me the MBE, that I would give it back.”

The Winstons have fallen victim to the government ban on “co-payment”, under which a patient who pays privately for any treatment cannot receive free state care for the same condition.

Lionel Winston was awarded his Member of the Order of the British Empire decoration by the Queen in 1994. The ceremony was attended by his proud wife and their two sons, Sonny, now 30, and Tel, 28.

Lionel, who was born in Dominica, worked his way up from the lower decks to become an officer.

“From extremely humble beginnings, Lionel has come a very long way and for him to have that medal is hugely important to him. I am extremely proud of what he has achieved,” said Diane.

“To even think about giving it back shows the extent of his disgust.”

In addition to the Nexavar, which costs about £3,000 a month, Portsmouth Hospitals NHS Trust, where Diane is being treated, has also issued bills for scans costing up to £480 each.

Diane’s consultant is so sympathetic to her plight she has given her time for free, but the trust charges an administrative fee for every appointment.

Last week, the couple, from Gosport, Hampshire, discovered that a deposit they had paid of about £3,700, which they believed had contributed to the cost of the drugs, had been used to pay for NHS care such as scans and appointments.

Kate Spall, campaigner at the Pamela Northcott Fund, a kidney cancer group, said: “This couple have had to rely on family, friends and fundraising to buy drugs to keep Diane alive. They are now in a position where they need to pay not only for the drug their NHS consultant desperately wants Diane to have, but also for NHS services, which is absolutely scandalous.”

The trust insists it advised the Winstons that their deposit would be used to pay for scans and hospital appointments and not medication.

A spokeswoman said the trust was following guidelines by charging for the routine treatments.

On October 2, Lionel will hold a fundraising dinner and auction on HMS Victory in Portsmouth to raise more money for his wife’s care.

Diane is one of thousands of patients with advanced kidney cancer who have been denied medication on the NHS that could prolong their lives. Last month, the National Institute for Health and Clinical Excellence (Nice), the government’s drugs rationing body, ruled that four drugs to treat kidney cancer, Sutent, Nexavar, Avastin and Torisel, are not good value for money despite admitting they are effective.

The decision prompted 26 leading professors of cancer medicine to write, in a letter to The Sunday Times, that the current system for assessing new drugs was not working.

The Sunday Times has been campaigning to end the government ban on co-payments.

Public outrage at the way patients have been treated prompted a review of the policy. The inquiry, by Professor Mike Richards, the national cancer director, is widely expected to allow patients to top up their care. Leading health insurers are preparing to offer policies that would enable patients to buy life-saving drugs not funded by the NHS.

Axa PPP and Saga are drawing up plans for the policies in anticipation of an end to the NHS ban on patients “topping up” free care by paying for private treatment.

One company, WPA, has already launched its health top-up policy, showing that the NHS ban on co-payment has begun to crumble in the face of patients demanding the right to buy the latest drugs.

Fergus Craig, commercial director for Axa PPP healthcare, one of Britain’s biggest medical insurers, said: “We are considering introducing policies to enable people to top up their NHS care with privately funded treatment.”

A spokesman for Saga added: “We are looking at how Saga health insurance might be able to provide payment for drugs that the NHS won’t pay for.”

Explore Health News

• Swine flu

Times Recommends

• Fern Britton: 'I still can't see that I was wrong'
• Extreme cooking
• Easy French: Tarte Tatin