The age of deference to doctors and elites is over. Good riddance

Mary Dejevsky in The Independent

There was something about the story of five-year-old Ashya King that went beyond the plight of this one small, sick child, wrapped up in his blanket and connected to a drip. It was not just the public relations savvy of his family: the elaborate preparations for their flight, recorded and posted on the internet that drew such all-consuming public interest. Nor was it only the drama of the police chase across Europe, and the nights spent in a Spanish prison. It was much more.

There was a profound clash of principles here at a junction of extremes: a child with a terminal brain tumour, a fixed medical consensus, and parents who hoped, believed, there could be another way.

You probably remember – I certainly do – how forcefully Ashya’s father, Brett, argued his case. He had, he said, set about learning all he could about treatment possibilities for his son’s condition on the internet and in medical journals and concluded that a particular form of therapy was superior to the one being offered by the NHS.

Now, 18 months on, Ashya King’s story has a sequel beyond the so-far happy ending of his recovery announced last March. The sequel is that the treatment his family fought for so hard has indeed been found to be superior to that generally offered by the NHS, and in precisely the ways that the Kings had argued. A study published in The Lancet Oncology – an offshoot of The Lancet – concluded that the proton beam therapy, such as Ashya eventually obtained in Prague, was as effective as conventional radiotherapy, but less likely to cause damage to hearing, brain function and vital organs, especially in children. 

In one way, that should perhaps come as no surprise, given King’s claim to have scoured the literature. There is also room for caution. This was a relatively small study conducted in the US. There was no control group – with children, this is deemed (rightly) to be unethical – and harmful side-effects were reduced, not eliminated. But such is the nature of medical research, and the treatment decisions based on it. Things are rarely cut and dried; it is more a balance of probability.

This may be one reason why the Lancet findings had less resonance than might have been expected, given the original hue and cry about Ashya’s case. But my cynical bet is that if the study had shown there was essentially no difference between the two treatments, or that proton beams were a quack therapy potentially hyped for commercial advantage, sections of the NHS establishment would have been out there day and night, warning parents who might be tempted to follow the Kings’ path how wrong-headed they were, and stressing how the doctors had been vindicated.

Instead, there were low-key interviews with select specialists, who noted that three NHS centres providing the therapy would be open by April 2018. Until then, those (few) children assessed as suitable for proton beam treatment would continue to go to the United States at public expense. (Why the US, rather than Prague or elsewhere in Europe, is not explained.)

It may just be my imagination, but I sensed an attempt to avoid reigniting the passions that had flared over Ashya’s treatment at the time, and especially not to raise other parents’ expectations. But I don’t think the controversy should be allowed to rest so easily. The King family’s experience raised serious questions about the practice of medicine in the UK and the attitudes of the professionals to their patients. And these latest research findings on proton therapy mean that it still does.

When Brett King presented his arguments, he did so not just with understandable emotion, but with enviable lucidity. He patently understood what he was talking about. This treatment was there; he wanted to give it a go, and he was prepared to raise the funds to pay for it. To the medics, he may well have come across as difficult, and there were those who genuinely felt that he was acting against the best interests of his son. In that case, the arguments should have gone to court – as they had done with eight-year-old Neon Roberts and his contested cancer treatment half a year before. That the Kings are Jehovah’s Witnesses may also have cued particular caution.

However, what many, especially in the medical establishment, seem reluctant to recognise is that change is afoot in relations between the professional elite and the rest – and not only because the so-called “age of deference” is dead.

Increasingly, it seems, we lay people are invited to make choices, only to be censured, or worse, for making the “wrong” one. Lawyers, for instance, will repeatedly tell you that they offer only advice; it is up to us to act on it, or not. So it is, increasingly, in the NHS. 

In theory, you can choose your GP, your hospital, your consultant – and, within reason, your treatment. In practice, it is more complicated. You may live too far away, the professionals may try to protect their patch, and the actual consultant is not there.

In the crucial matter of information, however, things have been evening up. The internet-nerd who turns up at the GP surgery convinced he is mortally ill may be a time-consuming nuisance, but such self-interested diligence can also help to point a time-strapped GP in the right direction. Not all are hypochondriacs. Patients may have more time and motive to research new treatments than their doctor. We old-fashioned scribes may have misgivings about the rise of citizen-journalism. But not all challenges to professional expertise are ignorant – or wrong.

In the case of Ashya King, everyone behaved questionably, even as they genuinely believed they were acting in the child’s very best interests.

But the days when the professionals – for all their years of training – had the field to themselves are gone. In medicine, we lay people are getting used to that. Are they?