Personal Column: The price of health

Barbara Clark, a 'Mrs Nobody', refused to accept that women weren't to be allowed the drug Herceptin on the NHS. She battled all the way to Downing Street
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The Independent Online

When I look back at what I've achieved nobody is more astounded than I am. I call myself Mrs Nobody from Nowhere. I'm just an ordinary person - a mum and a foster carer. I would never have imagined that in my lifetime I would change government policy.

In February 2005 I found a lump the size of a pea under my arm. I was pretty convinced that it wasn't breast cancer because I'd had a benign lump the year before. I went to my GP and was fast-tracked to hospital. The doctors there thought it was a cyst, but took a biopsy just in case. I felt quite impatient while I was waiting for the results because I had my foster child to pick up. Then they started talking about cell changes. I didn't catch on, despite being a nurse. My doctor said: "Barbara, it's cancer." I remember feeling a flush rising up my face. It was as if the bottom had dropped out of my world.

I left in a hurry. My whole life was a hurry in those days. I broke down in tears in my car, thinking about my boys. I've got a son, Richard, who's 20, and a 13- year-old adopted son called Ash. I also give respite care to a boy of six. Two weeks later I went into hospital for a lumpectomy. I was told I had the most aggressive form of breast cancer. It had already spread to the lymph nodes and they hadn't managed to get a very good margin. It's usual to get at least a millimetre of a margin between the cancer and the good tissue. Mine was 0.2mm. They couldn't get any more out because it was under the arm. I was given a 14 per cent chance of survival with chemotherapy. Later on, a doctor told me that the cancer was expected to come back within four to seven months after chemotherapy. My former partner had come with me and said it was as if I'd been given a death sentence.

Two months after my diagnosis I read a newspaper article about the dramatic trial results of a drug called Herceptin. At the time it was only used in the advanced stages of breast cancer. It had now been shown to halve the disease's risk of progressing in the early stages. For my type of cancer - HER2 - it slashed the risk of relapse by more than half. I had to get this drug. If nothing else, for my boys.

I spoke to my private consultant who said the National Institute for Health and Clinical Excellence (Nice) would have to consider the drug for licensing and approval for use for early-stage HER2 cancer. It could take years and, without its go-ahead, the NHS wouldn't prescribe it. He said it would cost about £50,000 for the first year's treatment.

A friend had nominated me for a local paper "reader of the month" prize for my work as a foster carer. I won, and mentioned to the reporter that I was going to sell my house to fund the treatment. The next thing I knew I was on the front page. When I got back from my cancer support group I had national newspaper photographers sitting on my doorstep and TV satellite vans queued down the road. My reaction was, "I just can't do this." But I thought this isn't just about me, it's about the 5,000 women who die every year from my type of cancer. That's how I found the strength to go on television.

I contacted my MP, who brought the case before the House of Commons. Two of my friends opened a charity account for me and we started fundraising to pay for the drug. I didn't think anyone would care about a little nurse from Somerset. But they did. We had a "Send a pound to save Barbara" campaign. An 89-year-old with cancer sent me £1 and children sent me their pocket money.

Not everyone takes to chemotherapy badly, but I was desperately ill. Once, a cameraman ran after me when I was being sick. But I took strength from thinking about my sons and all the other women who needed the drug. I couldn't live with the injustice.

I carried on fighting through the summer, then I got an email from a woman who suggested using the Human Rights Act against the Government. I went to see a human rights solicitor who thought I had a case, but also thought I had a case to get the drug under exceptional need because Ash has a life-limiting lung condition. He wrote to the Somerset Coast Primary Care Trust. They agreed to give it me and I had my first dose in October 2005. The money given by the public to fund my treatment, almost £30,000, was spent on single doses of the drug for 15 women.

As they had given me Herceptin out of exceptional need it prevented the domino effect I was expecting. It made me very angry. I thought, "Blow it, I'm going to carry on the fight for other women." I kept in touch with Patricia Hewitt, the Health Secretary, and I went to see Cherie and Tony Blair. I did lots of media work. The media saved my life. They wouldn't let the story go.

Last August, Nice announced Herceptin was to be made available to all women in the early stages of HER2 breast cancer. The drug is now available five years sooner than it might have been and this equates to 9,000 lives being saved. It's an astonishing feeling. Nice will also now fast-track all life-saving drugs.

I'm very pro the NHS. What I find appalling is administrators wasting money. They are too keen on setting patient group against patient group, saying if this patient gets that, this patient goes without. But the money that has gone down the drain has been spent on things like artwork - £18.5m in four years. They say it makes patients feel better. Well it's little use to me if I'm dead.

I'm in remission now. I don't sleep very well in the days leading up to the tests. I've got my next mammogram soon, so fingers crossed. Even if it comes back I won't give up. You can live for many years and have quality of life with cancer. In a way I would say my cancer was a blessing because now I stop and smell the flowers. I notice the world around me and I have better quality time with my children. Somehow I was too busy for all that before.

'The Fight of My Life' by Barbara Clark is published by Hodder & Stoughton priced £16.99