A mother of three has died from cancer after her family was forced to pay £20,000 for treatment she was denied by the National Health Service because she had bought a drug privately.

Carole Simmons, 59, died last Tuesday, the third person known to have died after suffering from the government’s policy of withdrawing NHS care from patients who buy top-up drugs.

Her death comes in the middle of a government review of top-up treatment, which was ordered after a campaign by The Sunday Times exposed the scandal. The review panel is due to report to Alan Johnson, the health secretary, later this month.

This weekend relatives of Simmons, who lived in Yapton, West Sussex, spoke out in the hope of sparing other families from suffering the same tribulations. Simmons’s husband Kevin, 59, a former divisional officer in the fire service, described what happened when she was diagnosed with bowel cancer last December.

“They more or less said that Carole had no hope, that she only had weeks to live,” he said. “They were sending Carole home to die.”

In an attempt to give Simmons more time, her family paid privately for a drug called Avastin, which was not available on the NHS. They believe it prolonged her life.

However, under government rules their NHS treatment was then withdrawn. As well as the cost of Avastin, the family had to pay about £20,000 for routine drugs, scans and consultant appointments that would otherwise have been available on the NHS.

“We got nine precious extra months with Carole which we may not have had if we didn’t have the money,” said Simmons. “We want Carole’s legacy to be that this policy will be changed so that this doesn’t happen to anyone else and top-ups are allowed.”

During the extra time she was given, Simmons, a former teaching assistant, saw a grandchild start school, enjoyed a family holiday in France and attended her sister’s 40th wedding anniversary in Jersey.

Simmons’s youngest son, Chris, 28, a solicitor, said: “Some people may be able to raise the money for the extra cost of the drug but they may not be able to pay for all the treatment, such as scans and consultant fees. Instead of ordering a review, Gordon Brown should have ended this immediately and allowed people to pay just for the extra cost of the drugs.”

He added that paying for Avastin had given “us time to put our affairs in order and to say our goodbyes”.

Simmons’s daughter Kate, 30, a civil servant, points out that her mother had paid for her NHS care. “Our mum worked all her life, apart from when she was bringing us up. She never claimed unemployment benefit and always paid her national insurance and taxes,” she said.

“Our mum really wanted us to speak out so that this would not happen to another family.”

The Simmonses paid for the drug and basic NHS care from savings and a loan. “This was my parents’ pension savings. They didn’t have the money lying around,” said the eldest son Colin, 35, a local government manager.

Simmons was treated at St Richard’s hospital in Chiches-ter before her NHS care was withdrawn. She then paid for Avastin and her treatment, including scans using NHS equipment, at the Spire Portsmouth hospital in Havant.

The Royal West Sussex NHS Trust, which runs St Richard’s hospital, said it was following government guidance by refusing to allow Simmons to continue to receive NHS care while paying for the Avastin.

The government inquiry, which is being carried out by Professor Mike Richards, the government’s cancer czar, was ordered in June following the disclosure in The Sunday Times that another bowel cancer patient, Linda O’Boyle, 64, from Billericay, Essex, had died after her NHS care had been withdrawn because she paid privately for the drug Erbitux.

In May last year Sandra Baker, 62, from Walgrave, Berkshire, died of bowel cancer after being denied NHS treatment because she paid for a drug.

Simmons is the first patient known to have died during the government inquiry after being denied NHS treatment. She would have celebrated her 40th wedding anniversary today.

Her local MP, Nick Herbert, the shadow justice secretary, said: “I am horrified that my constituents have had to use their savings in this way. The awful situation at the moment is that if you do manage to scrape together the money to buy these drugs yourself, your NHS treatment is withdrawn. This puts patients in a terrible dilemma.”

The Sunday Times Right to Pay campaign has been fighting on behalf of NHS patients who have been denied care because they have paid for drugs to give them a better chance of survival. The campaign has won the backing of the medical establishment.

Most leading health organisations, including the British Medical Association, the Royal College of Nursing (RCN), the NHS Confederation, which represents hospital managers, and the King’s Fund and Reform think tanks, have said top-ups must be allowed.

The Roy Castle Lung Cancer Foundation and the Patients Association have both backed top-ups in their submissions to the inquiry.

While the RCN accepts that allowing top-ups is necessary, nurses’ leaders warn that the change could create “business class” treatment for NHS patients who can afford it and thus potentially undermine the founding principles of the NHS.

Others argue that there is already a two-tier health service, as those who can afford to pay for all their care go to private wings of NHS hospitals.

The government inquiry, to be published at the end of this month, is expected to propose that patients should be allowed to pay for additional drugs without losing their NHS care.

Kate Spall of the Pamela Northcott Fund, which campaigns on behalf of patients denied drugs on the NHS, said: “Let us hope that Carole’s tragic story will bring about the end of this situation for patients.”

- If you have been affected by NHS drug rationing please contact us at health@sunday-times.co.uk

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