Lethal psycho-babble

Picture of Claire Dyer, with some family photos in front of herI’ve been unable to get the ongoing case of Claire Dyer (right), currently being threatened with forced transfer to a secure hospital unit 185 miles from home under a wholly inappropriate section of the Mental Health Act, out of my head this past week; the post I wrote about it last Monday has received the biggest number of viewings of all my articles for the whole of the past month, despite being less than a week old (see earlier entry on Claire for an update). What is happening to Claire reminds me of what happened to a number of other young people subject to misguided psychiatric interventions for physical conditions, which in a lot of cases led to long-lasting, very damaging consequences. In one case, a young woman died.

“Psycho-babble” is used to mean speculative or spurious psychological or psychiatric explanations for physical symptoms. It tends to arise when medical doctors cannot find physical explanations for things, but not always. Although Multiple Sclerosis, for example, was identified by French neurologist Jean-Martin Charcot in the mid-19th century, until it could be positively identified by MRI scans, many doctors regarded it as hysteria, and Hillary Johnson noted that some sufferers were released from psychiatric hospitals when MRI scans proved that they were physically, not mentally, ill. More recently, the main victims have been people with ME, often with very severe, noticeable physical symptoms but which doctors could not put their fingers on and for which tests came back negative. The stigma of the “all in the mind” disease persisted, influencing the way physicians interpreted new physical symptoms. Ironically, this often left a legacy of mental trauma that had not been there before the onset of the original illness.

Picture of Sophia MirzaThe most notorious case of someone having treatment for their physical illness hijacked by psychiatrists was that of Sophia Mirza, who lived in Brighton and died in 2005. She had severe ME and had spent several years living in a dark room, in bed with her eyes covered, to keep out the light that hurt her eyes. Local doctors became convinced that her illness was psychological in nature, and shopped around for a psychiatrist who would agree (to their credit, several did not). Ultimately, she was taken into hospital under “section”, referring to the sections of the Mental Health Act that authorises treatment of mental health patients without consent if it’s deemed necessary. Her family won an appeal against the section days later, but the damage was done; her illness deteriorated drastically and she died about two years later. An autopsy found abnormalities in her spinal cord, which proved that she was indeed physically ill. Right now, a 24-year-old woman with ME named Karina Hansen has been in a locked unit in Denmark since last February; she has also been denied visits with her immediate family, but those who have visited have said she showed no sign of recognition, while prior to removal she could speak coherently. The family is in no doubt that her incarceration has caused a drastic deterioration in her condition.

Even when the intervention is not fatal, it cause entirely unnecessary trauma to a vulnerable person, which may make their recovery more difficult or less likely. The case of another ME sufferer, Lynn Gilderdale, may be an example: she developed ME in 1991 following a routine vaccination, and over the next nine months deteriorated to the point where she was bedridden, could not speak, and depended on tube feeding as she was unable to swallow. She also had extremely poor memory, often forgetting who members of her family were, and was unable to tolerate having people around her. In the early phase of her illness, desperate for any hope of a cure, her parents admitted her to a child psychiatric ward at Guy’s Hospital in London, assured by the consultant that he believed her condition was physical; however, it soon turned out he had lied about both that and the conditions Lynn would be living in while at the hospital. They allowed other children to harass her, ignored her symptoms and asked her parents questions as if her illness was entirely the product of family problems of some kind. While in the unit, Lynn lost the ability to speak (permanently). Her parents removed her after 16 days.

Picture of Lynn Gilderdale, a white woman with dark hair, wearing a light blue nightdress, with a naso-gastric tube and intravenous lines visible, and a pained and sad expression on her faceLater on in her illness, another group of doctors mistook a skin rash that was caused by ringworm, acquired from her cat, for “dermatitis artefacta”, a self-inflicted skin inflammation, suggesting that she had caused the irritation by mixing together common skincare products and rubbing them round in circles. This is a very elementary error; ringworm is something one does not have to be a doctor to identify, and her family identified it by looking in a cat owner’s magazine. It was assumed to be self-inflicted because the doctor was prejudiced from not believing in ME. Prejudices of this sort have beset other people seeking medical help for serious physical ailments; a fellow health activist once told me that a teenage girl with a serious gastro-intestinal disorder was presumed anorexic because she vomited persistently and failed to put on weight, and ended up being sectioned in a psychiatric ward. An ME sufferer I know wrote that when her illness was at its worst, doctors assumed the same of her, because anorexia is just the reason why teenage girls lose weight dangerously. Another friend, recently diagnosed with Ehlers-Danlos syndrome, was told (by a Simon Wessely associate) not to associate with her disabled friends, see any more doctors about her symptoms or use a wheelchair or walking aids, as this would constitute adopting a “disability lifestyle”. (I know other people with EDS who have also been subject to mental health labelling by doctors who did not know about EDS, which is a hereditary multi-system impairment. Some of them are now terrified of spending a night in hospital.)

Lynn, as long-time readers of this blog will remember, did not recover. She remained bedridden all her life (although some of her cognitive abilities returned and she was able to make friends online), and she took her own life, after several more hospital disasters including one that nearly killed her, in 2008.

More recently a young girl from Connecticut, Justina Pelletier, was admitted to Boston Children’s Hospital last February, on the advice of her clinical team, one of whom had recently moved there. Not long after arrival, however, a different team began insisting that her symptoms, which doctors at Tufts (where she had been receiving treatment) diagnosed as mitochondrial disorder (a disease that mainly presents as muscular dystrophy, but also as a form of diabetes and an ME-like debilitating illness), was in fact a product of “somatoform disorder”; in other words, they were a psychological problem, and her parents’ following of the treatment for that was deemed a kind of medical child abuse. When her parents tried to remove her from Boston to take her back to her old hospital, the hospital alerted the state and Justina ended up being held in a secure adolescent psychiatric unit at the hospital until last week, and allowed only an hour’s visit and a 20-minute phone call each week with her parents. Press reports about this affair reveal that both the unit and the child protection department at Boston Children’s Hospital have been the subject of numerous complaints about this kind of behaviour, and while parents agree that the care on offer there is world-class and that “a few radicalised individuals” are responsible for the abuse, an institution is responsible for bringing these kinds of people to heel. A patient (of any age) should not be held prisoner for a year because of a dispute between two groups of doctors over their diagnosis; the stakes should not be so high in a respectful disagreement between two eminent physicians, or groups thereof. Mitochondrial disease, although rare, is not a controversial diagnosis.

Picture of Simone Blake, a white woman with bright red hair wearing a silver necklace and pendant and a long-sleeved black top, in front of a window, believed to be at Winterbourne ViewClaire Dyer’s tribunal is tomorrow, and I hope it will become a landmark case, particularly in terms of exposing and ending the misuse of the Mental Health Act to control behaviour stemming from learning disabilities, as well as exposing the sort of abusive practices that some in the profession think is fine when the person affected has a learning disability and challenging behaviour, as well as the psycho-babble used to justify it (I am referring to specific things that have been said about Claire, including by ‘experts’ who have never met her). Then again, such attitudes may be more widespread, judging by the incidents of people remaining in short-term units for years or being transferred to hospitals or units hundreds of miles from home for lack of more suitable facilities nearby — the ongoing situations of Simone Blake, the woman shown being violently abused in the Winterbourne View exposé, now in a unit hundreds of miles from home where her parents cannot visit her, and Joshua Wills being classic examples. Units for providing critical care for people with learning disabilities are considered vital, but decent long-term residential or community care isn’t, nor is it glamorous.

The problem of psychiatric interference in physical medicine is a wider one, however. Such explanations are appealing because they are awfully clever — who’d have thought a psychological affliction would cause people to vomit and suffer extreme pain? — and because they appeal to doctor’s existing prejudices and get them off the hook when they have long waiting lists. However, the effects on patients when these explanations are wrong can be devastating: they can delay treatment until someone’s condition has declined irreparably, they can result in abusive hospitalisation and treatment and lasting trauma, they can result in inappropriate and harmful treatment, and at worst they can kill.

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