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.
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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.
It is easy to fire out a few tweets when someone with Aspergers appears on I’m A Celebrity… Far harder to snarl and snap at the hand that feeds you so richly, since part of the problem is how organisations are compromised by their activities. So Mencap, despite posing as the key voice for people with learning disabilities and their families, ended up attacking the bereaved parents of Danny Tozer, a man who died in their ‘care’ amid evidence of failures. You might think this famous charity is a campaign group. Yet most of its funding – £163 million out of £191.9 million income last year – comes from running services as an offshoot of the state.
At least the National Autistic Society issued a report on unacceptable in-patient care for people on the autism spectrum last year and has highlighted how families are ripped apart by these revolting policies. But it has also recently shut a residential home it ran in Somerset amid a police probe into hideous abuse and bullying of people with complex needs. Note again that more than eight in every ten pounds of its income comes from statutory bodies. Meanwhile Scope, in a landmark move, has sold off its residential and daycare services to focus on campaigning – yet still insists its voice was not muted when receiving some half its income from the public sector.
I have seen the same situation in the development sector, where ideals have been corroded by the torrent of cash flooding from Whitehall’s coffers. Now household names collude with their paymasters to fend off criticism of profligate aid policies. The most outrageous example was the IF campaign, created six years ago by charities in harness with politicians who were purported targets of their pressure.
Key players included Save The Children, which receives huge sums from the government and whose chief executive Justin Forsyth, a former Labour adviser, worked hard to woo influential Tories before admitting to inappropriate behaviour towards women employees. One source at another charity told me it was made clear “either you do this or there might be repercussions”. I am also told of routine meetings to plot joint fightbacks against media criticisms, not to mention all those questionable junkets for MPs.
The legacy of such self-serving and supine behaviour is the sickening sight of aid charities covering up sex abuse and corruption to protect their valuable brands. This symbolises how they have become powerful corporate entities posing as cheery do-gooders while they flit around the planet preaching their patronising creed and networking with politicians. Note also recent revelations in The Times exposing how scores more charities were signing agreements not to criticise government justice and welfare policies to ensure they could carry on sucking contentedly at the state funding teat. This is contemptible behaviour on both sides.
No wonder public faith in charities has plummeted following a series of scandals from Kids Company to Oxfam, two organisations proved to have moved far from their edgy beginnings as they cuddled up to politicians. Kids Company was found to have taken £46 million in public money after it imploded and the claims of its well-connected founder turned to dust. Trust in Britain’s 168,000 charities stands at its lowest level since checks began in 2005 due to issues such as aggressive fund-raising, high pay, abuse of vulnerable people and greedy growth obsession. Many also overlap each other’s work, especially in areas where state funds flow readily.
An important report this month by the Civil Society Futures inquiry highlighted how charities are seen by a sceptical public as disconnected from their communities and the people they claim to represent. Some are simply brand-obsessed as they chase expansion, others too dependent on their local and central government contracts. “Collectively we must transform ourselves or risk becoming irrelevant,” it concluded rightly. “Some in civil society knew of abuse at Oxfam and elsewhere, and others knew that Kids Company would fail: there is a culture of silence and this undermines shared accountability.”
This was a damning but accurate report, calling for a return to radicalism by putting power back in the hands of the people. It is the latest alarm call for the big players who have become – with a small handful of honourable exceptions – corpulent and complacent corporations with their carefully-buffed brands, shallow campaigns and clutching of celebrities. The big question is whether they will heed the message before it is too late and start standing up for those they profess to serve? Or are they so in hock to the state that activists, families and communities must simply ignore them or even fight them if they seek real change?