Lauren Cooper (Janis Revell)

Janis Revell, a young white woman with long dark hair wearing a plaid shirt with a long necklace of pearls hanging from her neck, smiling as an older woman (her mother, Audrey Revell) spells something into her hand.

This morning it crossed my mind to Google the name of Janis Revell, a young lady who was deafblind who died an agonising death in a British hospital in 1999 whose poems and writings I had read many years ago. As a teenager she had appeared on TV in 1984 after composing a musical tribute to princes William and Harry; at the time she had been blind for more than 10 years and was in the process of losing her hearing, so composing was increasingly difficult as she could not hear most of what she was playing. As an adult she wrote poetry and song lyrics and kept a website which detailed how she lived with her multiple impairments and her struggles with the Department of Social Security, as was (now DWP). Her mother, Audrey Revell, wrote a book about her life and how she died; published in October 2006, it is called Take My Hand and is still in print. Her death was, her mother believes, the result of a reaction to psychiatric medication she was given for depression in her last year or so; however, a coroner recorded a verdict of natural causes and the NHS ombudsman found against them also.

Reading Audrey Revell’s interview from 2006, I am struck by the similarities with the case of Oliver McGowan, a young man with mild learning difficulties and autism who also died in an NHS hospital as a result of a reaction to a psychiatric drug he was prescribed called olanzapine. Both Oliver and his mother had warned the doctors not to give it to him as he had had an adverse reaction in the past; they gave it to him anyway, and it caused a reaction called Neuroleptic Malignant Syndrome (NMS) in which his temperature spiked and his brain swelled up such that it started coming out of the base of his skull. He had been taken to the hospital in October 2016 after suffering a seizure (and not for any mental health reason); while at the hospital, he became agitated because police officers stood around him and demanded answers to questions rather than one person talking to him at a time calmly. The coroner decided that the drug had been prescribed properly and the parents said they were very disappointed with the verdict, that the doctors had been arrogant and the coroner overly protective of them.

One of the drug involved in Lauren Cooper’s case was carbamazepine, sold as tegretol (among other brand names). She had first been prescribed this in 1983 when she was about 18 and it was thought to be a “wonder drug” for the treatment of epilepsy, which she did not have, but as she described, “my neurologist in Nottingham gave me the drug experimentally to see if it would benefit my symptoms of acute neuritis and involuntary muscle spasms in my arms”. It resulted in an acute deterioration in her hearing and also her sense of touch, such that she could no longer read Braille, and when her mother stopped her taking it, she suffered horrific withdrawal symptoms. Later on, she had a breakdown after the birth of her daughter, Holly, and was admitted to a psychiatric unit where her condition continued to deteriorate; staff there persisted in assuming that her symptoms stemmed from an attachment disorder and did not allow MRI scans when her parents, and Lauren herself, demanded them. She was left on the floor on the assumption that if her ‘behaviours’ were not indulged, she would snap out of them. Her condition continued to deteriorate, she was admitted to the intensive care unit of the hospital where she subsequently died.

Her writings were published on her website; the original site has since expired, but archived copies exist on the Wayback Machine. There is a set of videos on YouTube showing her interviews following the tribute to William and Harry. Ironically, one of her poems later attacked their mother for refusing to touch her hand when the two met in hospital. I wonder if Diana knew who she was or remembered the tribute.

It goes to show that the attitudes that may have brought about Lauren’s death, or at least made her final months an undignified misery, have not changed much in nearly 20 years. Today people talk of how a diagnosis of Borderline Personality Disorder (BPD) or other psychological disorder commonly obscures physical symptoms and results in medical and other professionals treating someone as less believable or as a mere nuisance rather than a genuinely ill person. It seems that women are more prone to this kind of treatment than men, but where race or disability such as autism is a factor, men are prone to lethally neglectful treatment, to “death by indifference”; another notorious recent case is that of Kane Gorny, who died in St George’s hospital in south London when he was refused water, despite his notes clearly stating that his condition required it. As in so many other cases, nobody was prosecuted over it. It is rare for anyone to be held to account, to suffer severe consequences in their career or to lose their liberty, for the death of a disabled person in hospital, whether they are adult or child, male or female.

(If you were wondering why Lauren Cooper had two names, the answer is that Janis Lorraine Revell was her birth name. After losing her hearing, she changed her name to Lauren Jan because she could only hear the hissing sound of the final consonant in Janis. Cooper was her married surname.)

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