Fighting cancer and the ‘unjust’ health service

Four months ago, when the cancer had spread to her spine, hips and ribs, Mills, 58, was advised to take a course of Taxol, a form of chemotherapy. She had read about clinical trials showing that Avastin, another drug, appeared to make Taxol twice as effective if used in combination, and asked if she might be prescribed it.

Her consultant agreed that Avastin might be useful, but told her the drug was not available on the NHS as it had not been approved for use by the hospital trust in North Yorkshire. Mills offered to use her savings to pay the £4,000-a-month cost of the drug, plus its administration, herself. But that, it turned out, was not allowed. She could not pay for some of her treatment without becoming a fully private patient and paying for all of it, pushing the cost up to at least £10,000 a month, far more than she could afford.

"So I was put in an impossible situation," she says. "Avastin may only increase your lifespan by six weeks or six months but, believe me, when it's your life, you're not picky. I could not understand the logic. I'd had a scan privately when there was a two-week wait on the NHS - once I said that I'd pay I was able to have it the next day - and the hospital had no problem with that.

"If I go to the dentist I can mix my NHS and private treatment. No one complained when I topped up my children's state education with extra maths and English - the school was very happy to take the credit for their good marks! The government says that to allow some people to buy extra drugs would be to undermine the fairness of the NHS. But this is not about fairness, it's about social control. If one person can't have something, no one should."

Mills's face is becoming quite flushed as she speaks. She apologises. It's not the vehemence of her argument but a side effect of a new drug, Capecitabine, that she has just started taking. She hopes it will keep the cancer in check a while longer and that she may have the opportunity to take Avastin - although the clinical trials have been done in conjunction with Taxol - with this or some other drug.

She has practically lost count of the number of drugs she has taken over the years - the cancer was first diagnosed 26 years ago when her children, Simon and Karen, were four and two. As we talk we can hear Karen in the kitchen. Through an accident of circumstance, Mills tells me, both children are back at the family home looking out over the North Yorkshire moors, but one can't help feeling that the chicks have flown protectively back to the nest in her hour of need.

Mills first noticed a lump on her breast when breastfeeding, but was told that it was a blocked milk duct and not to worry: "So, like a fool, I didn't." Back then she was working nights at Blackburn Royal Infirmary, having come over from Ireland, her birthplace, to train in Liverpool.

She most enjoyed her early years as a nurse in the rough and tumble of A&E, and is clearly a feisty character. "But I don't fight everybody for everything," she laughs. "This is a clear injustice. It's inhuman."

In those days there was no question of "co-paying". The drugs were not very sophisticated and you were grateful for what you got. As she went for her first biopsy, the surgeon told her to "keep an open mind" about what might happen and she woke up to find she'd had a mastectomy. She still winces at the memory of the awful pink prosthesis that was regulation NHS issue and the impossibility of finding nice underwear.

"Nothing fitted and you had to always be careful of dresses that were too low-cut or armholes that were too loose," she says. "My husband and I had a code when we went out. He'd make sure he sat near enough to give me a kick if I leant too far forward, so I'd know to sit up."

She and Eric, who works in advertising, have been married for some 30 years and he is as protective as ever, worrying that the attention Mills's case has drawn is wearing her out. "Sometimes he says, 'If that phone rings once more I'll tear it out of the wall'," she says.

She, in turn, worries about what would have happened to him had she opted for the totally private treatment and spent everything they have. "He might live for another 20 or 30 years," she says. "He has to have something left."

After a number of scares and relapses in the first few years, she was "blissfully" cancer-free for nearly 20 years. Then, in 2003, she had a reconstruction ("It was wonderful, I could wear any T-shirt, any bra") and the trouble started over again.

Lumps appeared on the scar tissue and she had chemotherapy. This time the cancer was aggressive. "I'm a nurse, I knew what was happening," she says. "We got the children home and told them. It was difficult to talk about it without frightening them or painting too bleak a picture . . . very traumatic."

Since then it has been a pitched battle, trying to hold the cancer back as it has inched forward with each scan. Being a nurse, Mills has tried to do everything she can to help herself, using complementary therapies such as reiki healing alongside her conventional treatment and reading her way though medical papers, one of which led her to Avastin and, inadvertently, to becoming a poster girl for other self-helpers who feel cheated by the health service.

As it is now too late to be prescribed the Avastin alongside the Taxol, Mills's legal action is on hold until a doctor agrees to her trying it with another drug. But her willingness to speak up has encouraged a number of other patients to protest, including Debbie Hirst from Cornwall who is in a similar situation, who put her house on the market to pay for treatment but whose trust has just indicated that it will pay for her to be treated on the NHS as an "exceptional case".

In Newcastle, Karen Gault, the mother of three-year-old Grace, is paying to be treated privately with Avastin to halt her bowel cancer - thanks to the generosity of friends and colleagues who have raised the money to allow her to do it. She is also appealing against her local hospital's decision not to treat her on what her husband Paul says is a "slim possibility" that they might be reimbursed.

Mills's solicitor, Melissa Worth, has had call after call from people caught in the same trap.

There is nothing in the NHS guidelines that specifically rules out co-payment, but the thought of allowing patients to supplement their treatment rouses strong emotions and goes to the heart of what it is reasonable to expect the health service to pay for, given finite resources. Alan Johnson, the health secretary, says that allowing some patients to access treatments that others could not pay for is unthinkable: "That way lies the end of the founding principles of the NHS."

Professor Karol Sikora, a leading cancer specialist and adviser to the World Health Organisation, says this is ideology gone mad, medical communism. "Nobody pretends this isn't a difficult issue, but there has to be a solution," he says.

"Yes, it breaks down the principle of everything on the NHS being free at the point of delivery but one has to live in the real world - these drugs are freely available in Calais. Or patients can order them over the internet.

"We need to put this out in the open and ask some pertinent questions. Because it's not just about paying for drugs. If the drug causes side effects that result in internal bleeding, or require surgery or intensive care, who pays for that? It would be simple to add on some insurance to the cost to cover such eventualities. But the real problem is that no politician sees it as a vote winner."

Mills has come in for her fair share of criticism as well as support. Commenting on a story about her in the newspapers, one man said that this was an "end of life issue" and she should "get on with it".

"I was asked how I would feel if I was getting a drug that the woman in the next bed couldn't afford," she says. "That would be sad, but I did not create the system. And this is not about finite resources in the NHS because, don't forget, I would be paying for the drugs I was getting. I would not be taking anything from anyone else."

The whole thinking behind the "one size fits all" approach strikes her as absurd. "Should we all live in council houses even though some of us can afford to buy our own homes?" she asks. "Where does all this stop?"

Perhaps the sense of exasperation and injustice is what keeps her going. The treatment has already taken a frightening toll. As well as losing her hair, Mills has lost the sensitivity in her fingertips. On Christmas Day she burnt her hands while cooking the turkey without even feeling the pain.

She loves to sit in her sunny conservatory, taking in the skyline above the moors, but she can no longer do cross-stitch nor concentrate on a book for long. The chemotherapy makes her tongue feel twice the size, so talking is awkward. And although she was bright and fluent on the day I visited, talking with apparent ease for an hour and a half and walking me through the family photographs that line the walls, I later learnt that such was the effort that Mills had to lie down for the rest of the day.

She has not got long, although who knows with cancer. "At some point I will have to decide whether to carry on with the chemo or just stop it and enjoy whatever time I have left, but I'm not there yet," she says.

Meantime, she keeps searching for an answer and fighting for her right to try whatever she can to prolong her life.