I have been betrayed by NHS bureaucrats

Unfair decision to deny cancer drug to hundreds of patients will condemn many to a shorter life

For more than eight years I have been wrapped in the warm embrace of the NHS as I learned to live with being a cancer patient. I was lucky to be diagnosed early, placed in the care of the Royal Marsden Hospital, treated with chemotherapy, monitored carefully as I recovered and counselled in dealing with the demons that descend when you hear the “c” word.

Last summer, after a remission of five-and-a-half years, my chronic lymphocytic leukaemia (CLL) returned. By April, it had progressed to the extent that my consultants decided I required treatment again and it was at this point that the NHS betrayed me. It is not the doctors, specialist nurses and phlebotomists who have let me down, but the distant, desk-bound NHS England (NHSE) managers who make life-changing decisions without ever meeting the patients they impact upon. In this case those bureaucrats rode roughshod over the advice of CLL experts to deny me and hundreds of other patients access to the best available treatment.

It is accepted here and in 54 other countries that people like me, whose CLL has returned after previous chemotherapy, should be treated with a relatively new drug called ibrutinib. Unlike chemotherapy, which pounds the bone marrow and does severe damage to the immune system, ibrutinib targets the cancer cells and stops them multiplying. It is a daily pill that has many fewer side-effects than chemotherapy. In most cases it is not debilitating; people on ibrutinib often lead normal lives, going to work to pay the taxes that fund the NHS.

Ibrutinib is not experimental. In January last year, It was approved as clinically and cost effective by Nice, who said it should be “routinely available” to patients whose disease had returned or whose genetic make-up made them resistant to chemotherapy.

Yet two months after Nice approved the drug – after a lengthy, transparent process – NHSE imposed restrictions on its use. In particular, it ruled that ibrutinib could not be prescribed for patients who had relapsed after remissions of more than three years. With a five-and-a-half-year remission, I find myself part of a group that is being penalised for having had long and successful cancer remissions.

A group of 14 specialist CLL consultants protested publicly, warning that the decision removes the ability of highly trained experts to treat patients appropriately, and pointing out that forcing consultants to reuse chemotherapy brings considerable additional risks for some patients. These concerns have fallen on deaf ears. NHS managers claim they have consulted their own “cancer experts” and are continuing to restrict access to ibrutinib for hundreds of people. In weaselly words that seem to have been written by lawyers rather than cancer experts, NHSE insists that it is “reasonable” for it to interpret the Nice guidance the way it has done.

For NHS patients, this situation is anything but reasonable. It is a cold, unkind decision that means more brutal chemotherapy, additional hospital admissions, a quicker recurrence of the leukaemia and, to put it bluntly, a shorter life. It comes at a time when we are being bombarded by headlines hailing remarkable developments in cancer treatment. In May, NHS England chief Simon Stevens declared that the NHS was on the “cusp of a new era of personalised medicine that will dramatically transform care for cancer”.

New era? What I have been offered on the NHS is another six months of chemotherapy, which would include the drug bendamustine, a derivative of mustard gas first synthesised by East German scientists in the 1960s. This chemotherapy is, of course, much cheaper than the new drug, but NHS bosses lack the courage to admit that money lies behind their decision.

I am fortunate to have a private healthcare scheme that allows me to be treated with ibrutinib. I am now at the stage in my illness where I have no option but to take that route, but as someone who believes deeply in the importance of the NHS to our society, I do so feeling guilty that hundreds of other CLL patients are being denied the most effective treatment.