My wife, Ailie Donald, died in March, aged 39. She had been ill with cancer of the oesophagus for two years. As with many of the thousand or so people diagnosed with the disease in Britain each year, the first indication anything was wrong was when she had trouble swallowing as food became blocked by the tumour. She went to her GP; a barium swallow and endoscopy were ordered and the verdict was delivered: "You know you are very ill, don't you?"
We were referred to the Royal Marsden, the specialist NHS London cancer hospital. It is a wonderful hospital: Ailie received the latest treatment protocol - "neoadjuvant chemotherapy and chemo-radiation". This is clever: instead of cutting out the tumour straight away, they first zap it with drugs (chemotherapy) and radiation until it is fried to a residual crisp and only then does the surgeon cut it out. Like so many medical advances, the technique has been pioneered mainly in the US where it is now pretty much the standard approach.
Anecdotal information suggests that many NHS patients outside the leading cancer centres still don't get this treatment, relying on the surgeon's knife alone. We were lucky; Ailie was at one of the few British hospitals using the latest cancer treatments. She responded superbly to the drugs and radiation and went on to have her operation at St Mary's, Paddington. This was a major undertaking: a leading surgeon removed her oesophagus and stitched her tummy straight to her neck. Eventually she made it home and was, everyone hoped, free of cancer. She had received the best care available from some of the top specialists in the country. We just had to wait.
But the cancer came back. We were told the news at the Marsden, the same day the Queen Mother turned 100. Any further treatment, we were advised, was probably palliative. For some time, we had been members of an internet "list" where we swapped stories and information with about 900 other oesophageal cancer patients.
Most of these folk lived in the US, many of them had suffered several recurrences but were keeping "the beast" - as they called it - at bay. They spoke of a wondrous variety of newer chemotherapy drugs that seemed to offer some hope to us in our situation. In particular, they mentioned Taxol, a drug made by Bristol Myers Squibb from yew extract. Indeed, most of them seemed to be on it and I have seen claims for it as the top-selling cancer drug in the world. Surely Ailie would be treated with this or one of the other drugs our American friends were getting?
Oh, no: these drugs are not available on the NHS for her kind of advanced cancer. Of course, we were given other, supposedly less unpalatable, explanations: the drugs concerned were "very toxic", might "make her sick" and impair her "quality of life". She must accept her fate and just go home and die.
Strangely, these toxic characteristics were similar to those of the older, NHS-approved drugs she had already had. Even stranger, the potentially nasty side effects were no longer an obstacle when, in desperation, we went to one of the top private cancer hospitals. And when we obtained a written second opinion from New York's Memorial Sloan Kettering cancer centre, several of the newer drugs, including Taxol, were recommended to us.
And why couldn't she have these drugs on the NHS? The National Institute for Clinical Excellence (Nice) was set up by Frank Dobson in 1999 to advise the NHS and government on which treatments should be funded. An examination of the Nice website reveals a veritable modern medical Circumlocution Office. Beyond publishing self-congratulatory statements, the institution appears to move at the pace of a snail and has, for example, only approved Taxol for the use of certain breast and ovarian cancers. One senses that little of the work done at the top US cancer centres finds its way through the bureaucracy.
So we went private. Luckily I had health insurance through my job. In the private sector, oncologists can prescribe all the top cancer drugs they are barred from using on NHS patients. Ailie received low-dose Taxol, with excellent results.
She died from complications related to the underlying cancer. But at least we knew she had received all the treatment that was possible: by going private she had been allowed to fight to the very end. We had started out with a warm affection for the NHS and its capacity to treat her, but that changed to bitterness and disillusionment when we were denied the level of treatment that so many Americans, in particular, appear to receive.
