This week the inquest into the death of Thomas Rawnsley, the young man with Down’s syndrome and autism who died in 2015 in a privately-run care home, Kingdom House, where he had been placed by the Court of Protection after his family campaigned to free him from abusive hospital confinement, concluded with a verdict of death by natural causes after the assistant coroner ruled that the jury could not consider the background to the circumstances of Thomas’s death, only the events of the last five days. This was because, as he was in private rather than state care (even though this was against his and his family’s wishes and on court order), it was not an “Article 2 inquest”, meaning the right-to-life clause of the European Convention on Human Rights, which applies when someone dies in prison or an NHS hospital. The family are not satisfied with the verdict; his mother Paula Rawnsley, quoted in a BBC report, said “we are left wondering how it can be natural for a fit and healthy 20-year-old to die from a chest infection” and her supporters are calling it another example of “death by indifference”. The charity Inquest called the verdict ‘shocking’ in a Twitter thread and called for “clearer guidance for coroners” about Article 2 in a Twitter thread.
I had been following Thomas’s story as part of the online activist community that built up around Mark Neary after his son Steven was incarcerated for several months in 2009 after an incident in a respite unit; the community gives support to parents who are trying to free their children, who are usually autistic, from unsuitable or abusive hospital placements. When I first heard of him, Thomas was in the Assessment and Treatment Unit where he had been sent after a supported living placement broke down after he came to mistrust staff because one of them had been violent (he was convicted of this). In the ATU, according to his mother, he was over-medicated with anti-psychotics to keep him docile and had been lying in a corridor with just a quilt over him. At some point, the local NHS trust came up with a plan to house Thomas in a bungalow in his mother’s home town with trained staff, a similar arrangement to that found for Josh Wills and others, but the plan fell through for reasons unknown and the plan was then to move him to a “specialist unit” in Peterborough, which his family also opposed because it was too far and his mother did not drive. When he was ultimately sent to Kingdom House, where he was initially the only resident, the care also raised serious concerns; his family noticed unexplained injuries such as a carpet burn during a visit, and the home first agreed to allow him home for Christmas and then reneged, claiming he would not want to come back and would “act up”, though they subsequently backtracked.
The inquest that concluded today took five and a half years to be heard; there were pre-inquest hearings to decide the scope of the inquest, but when adjourned last September, it was understood that it was to be an Article 2 inquest. This was reversed after that coroner retired and the assistant coroner found that Article 2 did not apply; his family’s lawyer said it was “deeply concerning” that private care homes were not held to the same standards as prisons or hospitals. As a result of that ruling, neither the effects of the medication Thomas had been forced to take over the years nor the standard of his care prior to his collapse in February 2015 were allowed to be considered by the jury.
This saga demonstrates the extreme difficulty in securing justice and accountability when disabled people, especially those with learning disabilities, are abused or die in either private or state care. Inquests are delayed for many years, often at the request of the care provider, are often reduced in scope, and coroners are notorious for deferring to ‘expert’ opinion, often that of the medics held responsible for the person’s death (as in the case of Oliver McGowan, whose death is only now being re-investigated). When an inquest fails to find neglect, the media then lose interest in the story, treating the verdict as authoritative rather than looking into why, say, it did not find that neglect contributed to the death of someone who had been shut in a room on her own for seven years and fed on junk food for that whole period, because it did not look at the role of the NHS’s commissioners or whether the hospital responsible for this treatment should have been involved in her care at all, or indeed, anyone else’s; in this case (Stephanie Bincliffe’s), interviews and features which had been planned were cancelled. No neglect, no story. A blinkered inquest can also result in the wrong lessons being learned; it can make it appear that the solution to suicide is to make the act more difficult (by removing anything that could be used for that purpose, regardless of legitimate other uses), rather than improving the conditions or treatment, and that the solution to respiratory distress is to check someone every few minutes, disturbing their sleep, rather than to maintain the physiotherapy they had been receiving until moving to the unit where they died.
Families who have lost relatives to poor social or hospital care rely on inquests to expose the truth about how their loved ones lived and died; besides being a legal judgement which carries weight with the media, they may also be the gateway to legal action and to holding the individuals and organisations responsible and ensuring that they cannot harm anyone else. There is a legal fiction that inquests are non-adversarial; organisations (including NHS trusts and large private hospital chains) are able to pay for legal representation so as to minimise the risk of being found to have contributed while families are forced to pay for legal representation themselves. They are frequently subject to delay, often taking years to be heard as in this case. Of course, the entire legal system has been subject to financial cuts since the Tories came to power in 2010, with courts closed and sold and legal aid cut to the bone, resulting in widespread delays across the system even before the Covid-19 pandemic took hold. It must be reformed so that it conducts robust investigations into the deaths of disabled people in any kind of institutional care, be it a prison, a hospital or a care home. Families must be funded to have legal representation and be able to call expert witnesses; they must examine the standard of care the disabled person received and the conditions they were living in; they must be wise to delaying tactics; they must be consistent in their application of the law. Coroners must abandon the false distinction that their role is to investigate “how someone died, not why”. The inquest must be about justice for the deceased if they died because of wrong, not fulfilling a legal formality. As things stand it has been a continual source of disappointment, and is part of a system that appears to consider some people’s lives as being worth less than others’.
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- How we still let our learning disabled down
- Burning your child’s past