Death of an advocate

Decisions on how money is spent on healthcare should be based on need and not on special pleading

“We tend to get at the summit of our professions,” the great surgeon Wilfred Trotter once wrote, “only those rare geniuses who combine real specialist capacity with the arts of the bagman.”

I was reminded of this observation when I read that the Oncologist Prof Gordon McVie had died on 20 January at the age of 75. In the 1990s, McVie was the public face of cancer medicine in Britain. The obituaries in both The Times and The Daily Telegraph featured a 1999 photo of the charismatic McVie, astride a ladder with a bucket in one hand and in the other a brush aimed at the female bottom featured on an enormous billboard poster.

The poster, according to The Daily Telegraph, “raised awareness of bowel cancer by attracting the wandering eyes of passers-by.”

McVie was Director General of Cancer Research Campaign (CRC) from 1996 to 2002, when it merged with the Imperial Cancer Fund to become Cancer Research UK. In early January 2000, the CRC issued a press release, written by McVie, with the headline “End to cancer in sight”. With the expansive optimism of the new millennium, McVie predicted that within the lifetime of his sons, cancer would be “beaten” – not necessarily cured, but readily controlled, like diabetes.

Shortly after, on 15 January, The Lancet carried an editorial entitled “Overoptimism about cancer”: “There is no doubt that the cancer charities are doing good work; that there is steady progress in cancer research and therapy, with substantial reductions in case-fatality from some cancers and improvements in survival for others; that clinicians and patients are frustrated by limited resources for cancer care; and that competition for funds is stiff. Even so, there is no case for flagrant exaggeration.”

The editorial concluded that “maintenance of public confidence is crucial for fundraising. Such confidence will be shattered when the public starts to see the gap between what is being said and what is being achieved.” An outraged McVie wrote to The Lancet, accusing the journal of giving succour to “misconceptions” and “nonsense”; he relished this kind of spat, as it attracted even more attention to his cause. McVie was described in a 2005 profile in the book European Cancer Leaders as “a master of the media soundbite” and “the unofficial chief advocate for UK cancer patients”.

Advocacy, according to the Medical Council’s Guide to Professional Conduct and Ethics for Registered Medical Practitioners (8th edition, 2019) is one of the core duties of a doctor: “You should speak on behalf of individual patients, to make sure they receive appropriate healthcare. In addition, you should support all patients [my italics] by promoting the fair distribution of limited resources and fair access to care.”

The concept of advocacy, however, is often misinterpreted by players of the game of “My disease is better than your disease”, in which doctors are pitted against each other in pursuit of “limited resources”. The winners in this sharp-elbowed game are those who can convince the politicians, the media and the public that their case is more deserving. The Lancet editorial which rebuked McVie warned: “If the claims are seized upon by disease-specific advocacy groups to lobby for resources, the result could be a very inequitable distribution of healthcare funds.”

For a small country, Ireland has a large health lobby sector, and our politicians are unduly influenced by local concerns and single-issue campaigns. In 2016, Prof Joe Harbison (of St James’s Hospital and TCD), then head of the HSE’s National Stroke Programme, wrote an article for The Irish Times entitled “Stroke patients are no less deserving than cancer patients”, in which he argued that “deciding priorities by whoever can gain the attention of the media and politicians will eventually create more losers than winners.

Those with the least resources for advocacy and those least able to articulate their case will end up with the worst care.” I should add that since 2016, provision of stroke services has significantly improved – deservedly so, given the proven effectiveness of thrombectomy.

But other causes are not so deserving. On more than one occasion, Irish health ministers have funded highly expensive drugs of debatable benefit – bypassing the usual process of assessment by the National Centre for Pharmacoeconomics (NCPE) – because of pressure exerted by the media and advocacy groups. Another striking example is the special fund set up in the UK by the Prime Minister David Cameron to pay for cancer drugs that had been rejected by the National Institute for Health and Care Excellence (NICE) or were awaiting assessment.

Of the 47 drugs funded, only 18 (38 per cent) improved survival, and then by a meagre average of three months. Between 2010 and 2016, the fund paid out £1.27 billion, a sum which would have paid for the running of every hospice in the UK for a year-and-a-half. British hospices rely on charity for two-thirds of their running costs; several have closed over the last couple of years because they ran out of money.

Advocacy is about justice, fairness and equality: decisions on how money is spent on healthcare should be based on need, not on special pleading.

Prof Seamus O’Mahony’s new book The Ministry of Bodies will be published by Head of Zeus on 4 March 2021