Last Wednesday the secretary of state for health, Jeremy Hunt, made a speech at the King’s Fund on “the quality of care”, in which he alleged, among other things, that there had been a “normalisation of cruelty” and gave as examples “patients left to lie in their own excrement in Stafford Hospital”, “the residents kicked, punched, humiliated, dragged by their hair, forced through cold showers at Winterbourne View”, “the elderly woman with dementia repeatedly punched and slapped at Ash Court care home” and “the cancer patient at St George’s, Tooting, who lost a third of his body fluid, desperately ringing the police for help, because staff didn’t listen or check his medical records”. He claimed that this culture of cruelty was “perhaps the biggest problem of all facing the NHS”, apparently ignorant of the fact that the second and third of these examples were not in NHS facilities at all — a pretty staggering oversight.
Ellie Mae O’Hagan, in yesterday’s Guardian, argues that nurses really haven’t stopped caring as it has become fashionable to claim; nursing is a low-status, lower-middle-class profession and any attempt to raise its status is met with ridicule, as with the common perception that degree nurses are “too posh to wash”. She also notes that when there is misconduct in a public institution it is deemed to be a sign of a disease in the system, while when the institution is private, it is “a few bad apples”, and that “when a government wants to dismantle a beloved institution, it is expedient to suggest that it is suffering from a malignancy”, as others have observed about the flurry of horror stories about cruel nurses — and it seems to be always nurses and never doctors). In fact, few people who are not extremely rich can afford to support its dismantling.
The other day the BBC London presenter, Jumoke Fashola, ran a feature on this issue of cruelty in healthcare on her Sunday morning programme. I called and was allowed to speak on the programme, but got a few sentences in and had to end the call because there was an echo on the line. However, I did get as far as saying that mistreatment is a particular problem in the experience of chronically ill people, young and old, and that most of these people do not want to see the NHS dismantled; it is a problem with the professions rather than the NHS as such. It does, of course, save people’s lives and there are a good many people who are grateful for the care they received and found that the staff who cared for them really did care and did a very good job. I had planned to tell the story of Lynn Gilderdale and the terrible experience she had in a number of hospitals in southern England, and the culprits there were, for the most part, senior doctors who refused to accept that her illness was genuine (I didn’t get as far as mentioning Lynn), on one occasion mistaking her ringworm rash, acquired from her cat, for “dermatitis artefacta”, a self-inflicted skin inflammation. This is an elementary error, and one that two people I asked who are not doctors responded by saying they could spot ringworm and they were not doctors. However, the issue of abuse of chronically ill patients is overlooked in both the general media and in books about the issue (a recent example being Michael Mandelstam’s book, How We Treat the Sick, which I have discussed previously here).
I have heard many people tell of cruelty, as well as various other types of unprofessional behaviour and stupid and dangerous mistakes, from nurses, and in some cases these encounters have led to lasting trauma. However, they are not the people who make most of the decisions — managers and senior doctors do. It is quite ironic that it seems to have been open season on nurses recently while the establishment clubs together and protects the senior figures who sometimes foster a climate of disbelief and hostility to people with chronic illness. This past Sunday, the Independent on Sunday published a letter from Esther Crawley, signed by 26 other doctors and professors in various hospitals and universities, once again complaining of the “harassment” meted out to Prof Simon Wessely (others have complained of similar harassment, including some of the signatories to that letter) and describing him as “one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field”. Malcolm Hooper, writing for Invest in ME, describes the signatories as “supporters of the psychosocial model of ME/CFS” and accuses them of conflating the “extremists” with those who present rational critiques of the psychosocial model.
There is no doubt that patients with various chronic illnesses, particularly those diagnosed (rightly or wrongly) with ME, have been subjected to years of abuse and ridicule from members of the medical profession precisely because of the psychological theories advanced by the likes of Simon Wessely. His supporters like to claim that, before he came on the scene, ME was widely dismissed as “yuppie flu” and it was he who advanced a theory that led to the illness being taken seriously, albeit not in the way the patients had wanted. On the contrary, before the mid-1980s, ME was acknowledged as an enteroviral neurological disease, and 25 years of Wessely’s research have, at best, not changed the fact that many doctors regard patients as malingerers and are over-eager to seek psychological explanations for both the ME itself and for unrelated physical symptoms in people with ME, as with the ringworm incident. There are numerous reports from both ME sufferers and others that he or members of his team have tried to tell people that they are making themselves or their children ill by one aspect of their behaviour or another (e.g. having disabled friends or frequenting online support groups), when in fact their disability or illness was the product of a demonstrable physical condition (and they often say that healthcare professionals’ attitudes and behaviour towards them dramatically improves if an ME or CFS diagnosis is replaced by one of a better-understood condition, such as Ehlers-Danlos syndrome as in six cases I know of personally). His theories also do not explain the recurrent findings of pathogens in people with ME, as found in the 2010 Dundee study and by John and Andrew Chia’s research, and elsewhere.
We have ways of disciplining errant nurses, although in cases where such a catastrophic failure has occurred as led to the death of Kane Gorny, who was left to die of dehydration because the staff did not believe he was in distress and mistook his signs of distress for aggression (as often happens when young men are seen to ‘act up’, especially non-white young men), it may be necessary to replace an entire cohort of nurses so as to get rid of the culture that may have built up among them (it is possible to charge them with manslaughter by gross negligence in such circumstances, and it is a mystery why that did not happen in Gorny’s case). However, the media heavily concentrate on reports of cruelty and neglect by underpaid nurses, and politicians conflate NHS nurses with entirely unqualified care workers in privately-run institutions, while fawning over the senior doctors whose theories underpin the culture of abuse and disbelief against vulnerable chronically ill people, portraying the patients as the abusers.
This culture of disbelief and preoccupation with psychological explanations for physical illness is a major plank of the abuse problem in British hospitals, and the people affected are often young, disabled and cannot say they have worked, paid taxes all their lives and fought in the War, but are still vulnerable and still suffering. As long as these highly-paid men and women go on being defended by the health establishment and media along with their cranky theories, the abuse, the egregious quackery by members of the mainstream medical profession and the suffering it causes on top of already severe illness will continue.
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- Fear-free healthcare, revisited
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- Review: Kids in Crisis