IT is traumatic enough to be told you have to fight terminal cancer without having to take on frustrating flaws in the healthcare system.

But this is the bleak situation Barbara Moss found herself in when she was forced to pay £21,000 from her own pension to fund her own cancer care.

Her bills included not only the cost of private drugs not available on the NHS but also the time of nurses and consultants, provided free to other NHS patients.

Because she paid for her so-called “top-up” drugs privately, she lost her right to free NHS care from the system she had paid into all her working life.

The mother-of-two, who had worked as a teacher in Worcester for 30 years, had every faith in the healthcare system until the time she needed it most – and it let her down badly.

But far from being bitter or angry she is just glad to be alive, convinced she would now be dead if she had not paid for a course of the drug Avastin.

Patients diagnosed with cancer now are far more fortunate than Barbara after the Government announced plans last week to allow patients to pay privately for medicines while still receiving NHS care.

Health Secretary Alan Johnson branded the existing system “cruel”

and announced the reforms to make cancer drugs more accessible.

The National Institute for Health and Clinical Excellence (Nice), which regulates the availability of drugs, will be given “greater flexibility” in approving more expensive drugs for terminally-ill patients.

Primary Care Trusts in each region will decide what to charge patients for these services but should not be seen to “profit unreasonably”, according to the report by cancer expert Professor Mike Richards who compiled 14 recommendations which were fully accepted by ministers.

Barbara, responding to the decision, said: “We have got to be asking for drugs to be available to all. If I had been diagnosed now I would have all my treatment paid for – I wouldn’t have had any costs. I believe the original decision was wrong. The fact that I am still alive after being diagnosed is proof that the drugs work. It’s dreadful to think of all the people who could have enjoyed longer lives. I would have been dead if I hadn’t paid for my own drugs – the situation was immoral. It was so unfair that practices were different from one PCT to the next.

“It was a postcode lottery. But you have to lift yourself up and be positive and live with it, not die with it. The issue should be in the hands of the medical experts, not the accountants.”

Barbara, who has welcomed the changes, spent her own pension on treatment and also received financial support from her elderly mother, 87-year old widow Edna Hart, to help her stay alive.

The 53-year-old of Aconbury Close, off Newtown Road, Worcester, now hopes the fight will be a less arduous and traumatic one for patients.

Barbara was shattered when she was diagnosed with bowel cancer in November 2006 and given between three and five months to live.

She even planned her own funeral.

But a course of Avastin shrank her “terminal cancer” so rapidly that it became operable and the tumour was removed at the Queen Elizabeth Hospital in Birmingham on October 4 last year.

Although the cancer returned in May, having spread to her lymph nodes, chest and neck, Mrs Moss believes the drug has allowed her to have a longer and happier life and given her more time to come to terms with her illness.

She is now fighting for her money back from Worcestershire Primary Care Trust which refused to fund the drug Avastin on the basis of advice from the National Institute for Health and Clinical Excellence which said the drug was not “cost-effective”.

She sent a letter on Friday to Worcestershire Primary Care Trust to ask them to refund the cost of her treatment which included blood tests, aftercare, oncology appointments and check-ups that she had previously received on the NHS.

An appeal for the PCT to fund her treatment as “an exceptional case”

was turned down in March.

Clifford Shore, below, delivered a letter to Worcestershire Primary Care Trust on Friday, the same day as Barbara, asking for his money back.

A spokesman for Worcestershire Primary Care Trust said: “Worcestershire PCT is now reviewing its policy with regard to co-payments and top-ups in light of last week’s announcement and the new national guidance.

“We welcome the clarity that the proposals and the new arrangements should bring to what can be a confusing issue for patients.

CASE STUDY 2: Thanks to Avastin, which I paid for myself, I have gone from being incurabale to possibly curable

CLIFFORD Shore of Fernhill Heath, near Worcester, was diagnosed with bowel and liver cancer at Worcestershire Royal Hospital in June this year.

He was told by medical staff that he faced a choice – between free NHS treatment or the same treatment plus Avastin which would give him a longer life but leave him with a large medical bill.

Mr Shore said: “It was a complete no-brainer.

“I was told I had either the NHS or the “best-chance” option and the best chance I would have to pay for.

I was told the average lifeexpectancy was two and a half years but that with Avastin this could increase by 50 per cent or more.

“Thanks to Avastin, which I paid for myself, I have gone from being incurable to possibly curable and I have had a much longer and more fulfilling life than I would otherwise have had.”

Mr Shore, who has appeared on television, radio and in national and local newspapers, said it was only down to high-profile campaigns by patients that had forced the Government to reconsider.

He feared that if it had not been for a vociferous group of determined and articulate campaigners, the situation would never have changed.

Like Barbara he now wants to claim back the £16,000 he has paid for his own cancer care which includes six cycles of Avastin.

The drug, administered via injection, attacks cancer in a similar way to the way our immune system attacks a virus.