We need to defend the principles of our NHS

Until a few years ago a diagnosis of advanced gastrointestinal stromal tumour (GIST) was accompanied by a life expectancy of less than two years. Since the early years of this century the introduction of new, targeted drugs has revolutionised the treatment available to patients and their prognosis has improved significantly. Despite this scientific progress, some patients are finding it difficult to obtain the full benefits of the new treatments from the NHS. These difficulties explain why British advocacy groups supporting patients with this rare form of cancer recently signed an international declaration identifying the basic standards that should be adopted in treating GIST.

The drugs becoming available represent a major development in the treatment of cancer. Decades of research are now producing results not only for GIST but for other forms of the disease. We should be celebrating the breakthrough we have all been hoping for over so many years. Instead, when doctors recommend new drugs that can prolong or improve the quality of life, some Primary Care Trusts (PCTs) refuse the necessary funding and decisions vary widely throughout the country. It therefore becomes difficult to identify who is publicly accountable for making such important, life or death decisions.

I must declare my own interest. In 2002, I had a five-kilo GIST removed from my abdomen. A year later, the cancer had spread to my liver. Chemotherapy had no effect and my outlook was poor until my consultant decided to try a recently introduced drug. I am now very fit and the condition is at present stable. Should I develop a further resistance to my current drug, other appropriate drugs have recently been approved or are entering clinical trials.

The new drugs are expensive; but the cost will come down after the original research costs are paid and as further research builds on existing knowledge. Our present experience is leading to further scientific advances and to cheaper ways of achieving the same effects. The new drugs have been developed by an international collaboration between both publicly and privately funded researchers. The NHS has not, therefore, had to bear the major part of the research and development costs. British researchers have, of course, contributed to the basic research involved.

Despite the present benefits and future prospects for developing new forms of cancer treatment, the NHS, as we have noted, has no consistent policy for ensuring the availability of the drugs throughout the country. When an oncologist prescribes a drug after considering the needs of his or her patient, a PCT may review the decision not on the basis of clinical need but on the basis of cost and on the state of their local budget. Moreover, if patients seek to fund the drug themselves by selling their home, for example, or by raising a fund supported by family and friends, they may face another huge financial burden. They may be classed as private patients who have to fund every other aspect of their treatment – including scans, blood tests and any hospital care that become necessary! What has happened to the principles of the NHS: the pledge that treatment should be free at the time of need?

The total lack of public accountability for decisions affecting the availability of the drugs is another major concern for cancer patients and their support groups. Last November, I wrote to the Department of Health in support of a fellow patient in another part of the country. Like me, she is suffering from GIST; but she had been denied the drug that is extending my life. The Minister passed me on to a Regional Health Authority (RHA) as ‘this is a local matter’. After five months, I received a reply from the RHA. They wrote: the local ‘PCT in consultation with the clinician has the responsibility for deciding on funding priorities’; but we know that the views of the clinician are often ignored! PCTs, when challenged, will also point out that they can only work within budgets and policies set by central agencies! Understandably, no one is prepared to stand up and say: ‘the decision to let that patient die prematurely was my responsibility’. And there is no elected public representative whom we can hold to account with our votes.

At seventy-eight years of age, I lead an active and fulfilling life, but I am alarmed by the growing trend within the NHS to deny patients a wide range of proven beneficial drugs. Moreover, I am concerned that politicians are neither articulating nor challenging these developments: there is a silence in our public discourse. No government minister declares openly that the NHS cannot afford care at the point of need. Instead, the government passes the buck to unelected bodies. Both government and local administrative bodies are then able to say: ‘it ain’t my fault Gov!’ The international declaration signed at Bad Nauheim in Germany in July 2007, calls for all patients to receive the treatment recommended by their specialist doctors informed by the latest evidence from scientific and clinical research. We must demand that our elected representatives adopt the principles of the declaration so that we and our families continue to receive care at the point of need from our NHS.

Potted biography of Emeritus Professor William Hampton

Professor Hampton worked in the Division of Adult and Continuing Education, University of Sheffield until his retirement from full-time teaching in 1994. His first book, Democracy and Community (OUP 1970), was a study of politics in Sheffield and he has published widely ever since including an involvement in two books in the past four years. He continues to be a Governor at the Northern College of Adult Education.

Postscript
Sadly Bill Hampton died in July 2009