Two days before he died of faecal impaction on November 17th2012, Richard Handley had 10kg of faeces surgically removed from his body. His family raised the alarm because his distended abdomen made him look as though he was ‘full term pregnant’and he was taken into hospital. He reached this condition in the context of a supported living complex which had previously been a care home. He took, like upward of 50%of adults with learning difficulties, regular laxatives for constipation and before he went into care his family endeavoured to provide a fibre rich diet for him. With the transition from care home to supported living, the quality of Richard’s diet went down and there was reduced monitoring of his bowel movements. Both of which contributed toward his premature death.
The move from institutionalised residential care settings to independent living was, in part, the result of extensive and exhausting lobbying from the disabled community. They were, quite rightly, enraged at what was essentially lifetime incarceration. Dumped in large buildings away from local communities with strictly enforced schedules, disabled people experienced unacceptably restricted lives, with limited acknowledgement of their individuality or humanity. Led primarily by disabled people with physical impairments, the move for those with learning difficulties from institutions to independent living, as with many of their ‘gains’, was largely state-orchestrated. Stacked high with rhetoric and buzz words of choice, inclusion and dignity.
Two days before he died, Richard Handley had 10kg of faeces surgically removed from his body. Such was the indignity of his supported living experience. One can suppose that the reduced quality of Richard’s diet reflected his personal ‘choices’. In the context of an unproblematised promotion of the principle of choice, combined with the prevalence of cheap unhealthy food (plus associated multi-million-pound advertising machine) and added to a limited state welfare income, how would an individual service user maintain a healthy diet? How do you explain the long-term implications of a poor diet to someone who has an individual understanding of time, or a limited capacity to understand the connection between what they eat, and physical discomfort? This is complex, rife with ethical and moral complications, and almost entirely the responsibility of an underpaid and undervalued workforce. Though not in any way a justification for the deleterious lack of adequate support Richard received, it is indicative of structural failures that go far beyond this one individual care setting.
Two days before he died, Richard Handley had 10kg of faeces surgically removed from his body. It is an affront to believe that a circumstance such as this would not warrant further investigation. The extraordinary persistence and strength of Richard’s family and supporters meant that, unusually, in January 2018 an inquest was held. INQUEST, a charity that provides expertise on state related deaths and their investigation, stated that “most so called ‘natural cause’ deaths of people with learning disabilities… are not afforded proper scrutiny and never have an inquest”. However, despite Richard’s unspeakably deficient care, at his inquest, diligently reported by George Julian, the coroner did not reach a finding of neglect.
The inevitable handwringing and apologies from the care providers, though not the confrontational stance witnessed in the case of Connor Sparrowhawk(another young man failed by state provision) were a revolting shade of tokenistic. The tedious and empty refrain ‘lessons will be learnt’ resonating like an incessant and discordant wind-chime against the ugly reality of a young man’s death. What is the lesson that has been learnt? There is little evidence of meaningful change since the first publication of Death by Indifference from Mencap in 2007. Like so many of the insults levied at people with learning difficulties throughout their lives, and deaths, to grapple mentally with Richard’s material and physical experience is an exercise in nihilism. When writing this blog, the expectation had been to speak widely about the myriad of ways in which we systematically punish people with learning difficulties for being. Punish those who love them and undervalue those who care for them. But words are abstract and sit in a parallel universe to a man who was allowed to die from constipation.
In the weeks following Richard’s inquest, care providers, in the spotlight once more, were quick to offer opinions and semi-promises. But with words that lodge somewhere between throat and diaphragm, one CEO blogged that he ‘cannot offer a 100% guarantee’ that no-one supported by his organisation will die of faecal impaction in the future.
Two days before he died, Richard Handley had 10kg of faeces surgically removed from his body. Though this does not define him as a person –he was engaging and friendly with a mischievous personality– uncomfortable and appalling truths lay bare the inadequacies of the system. We owe it to Richard, and all other mistreated people with learning difficulties to address the scandal of their ‘support’, and not nullify the unpalatable. It is with this ammunition that organisations such as INQUEST, families, supporters, and people with learning difficulties will force a channel for change.
It can’t come soon enough.
You can donate to INQUEST here.
An audio version of the blog is available here (5m32s):
Derek on May 3, 2018
We know dozens and dozens of individuals on the ASD spectrum that suffer exactly the same. Some regular laxatives would have made a difference, plus the carers were ignored.