The National Health Service has been ordered to start looking into the deaths of patients in mental health units to learn from its mistakes. It’s such a basic idea it seems incredible it’s not already common practice. But it only became a big issue three years ago when it emerged that the atrocious Southern Health Trust had not bothered to examine the deaths of about 1,000 people with autism or learning disabilities in its so-called care – while being run by a highly-paid woman once judged the country’s best chief executive.
This revelation highlighted the shamefully low priority given to people with autism and learning disabilities even in the supposed sanctuaries of specialist units run by mental health trusts. A subsequent national review found their health was being “adversely affected” by issues such as abuse, incompetence, neglect and sluggish treatment. It disclosed the depressing statistic that median life expectancy for people with learning disabilities is more than two decades less than all other British citizens.
So whom should we thank for exposure of this damning data and this long-overdue reform? Not the self-serving medical establishment, nor all those politicians shouting at each other over the despatch box at Westminster. More strangely, nor is it all those noisy big charities with senior executives on six-figure salaries, a ceaseless flow of press releases and carefully-natured brands. No, these breakthroughs are largely down to one grieving mother, whose beloved teenage son drowned in a bath following a series of mistakes.
Sara Ryan was so distraught over the needless death of her son Connor, whom she nicknamed Laughing Boy for his zestful spirit, that she became a formidable campaigner. Desperate to stop other families suffering, and aided by a small group of activists and parents, the academic launched a social media campaign around the hashtag #JusticeforLB. It has had a remarkable impact. Yet ask her about those powerful charities and she tells me I have touched a sore nerve. “They are parasitic, partial and controlling in terms of the families they get behind,” she said. “They are shameful corporate entities more concerned with reputation than the impoverished lives – and deaths – of ordinary people.”
Harsh words. Sadly, however, they ring true. I know her view is shared by other traumatised parents since I have heard this again working on a recent series of articles exposing how people with autism and learning disabilities are locked up in barbaric conditions – forcibly sedated, violently restrained and fed through hatches in solitary confinement – simply due to their conditions. It is reminiscent of Bedlam. But once again, the campaign was led by families, not charities. So why is this?
I fear the answer is simple, if disturbing: many major charities have been captured by the state, becoming so reliant on government funding they have forgotten their purpose and forsaken their roots. Ryan told me a small charity called My Life My Choice fought alongside her from the start – but one household name just wanted her to sit holding a picture of her dead son behind them in a parliamentary meeting while another only jumped on the bandwagon once it took off.
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