A sliver of hope for abused patients?

Published by The i paper (4th November, 2019)

This is already the most depressing general election of my lifetime. I despise both the men seeking to become prime minister, a pair of party leaders united only by their unsuitability for the task of salving the wounds of our troubled nation. Yet we desperately need our democracy to function better and politicians to inspire faith they can solve huge problems confronting our country.

So as we stand on the cusp of this crucial election, one that could shape Britain for decades, I would like to offer a sliver of hope that Westminster can sometimes rise to the challenge. As regular readers know, I have been campaigning to end the abusive detention of people with autism and learning disabilities. Hundreds are held in horrific conditions in secure psychiatric units: locked in solitary confinement, forcibly sedated, violently restrained and fed through hatches like wild animals. They have fewer rights than dangerous criminals.

Their treatment intensifies stresses rather than helping them, yet some families are legally silenced from talking about cases. This barbarity often costs much more than good community care, yet dreadful private firms can pocket up to £730,000 a year for each patient.

My revelations, backed by brilliant journalism on the BBC, Sky and ITV, were based on the bravery of patients and families prepared to speak out. Their courage led to a series of official inquiries. Last week came the verdict of the Joint Committee on Human Rights, an influential parliamentary body representing both houses. The MPs condemned the terrible suffering, shredded care system failures and savaged the Care Quality Commission watchdog. Gratifyingly, they grasped this is an issue at heart of grotesque human rights abuse and saw that ending systemic failure relies on empowering patients and families.

This scandal is, after all, a long-running sore that first exploded into public view in 2011 when a BBC Panorama exposed criminal abuse at Winterbourne View care home. Politicians and health chiefs promised to empty secure units of people being warehoused in such grim places due to lack of community support. Instead the horror stories have continued – a disturbing reflection of dismissive wider attitudes towards citizens with autism, learning disabilities and mental illness. I singled out Matt Hancock M for attack in the media, although his predecessor shares much blame for inaction.

But I was dismayed the health secretary’s emotive talk of action was followed by weakening of discharge targets and dismal failure to assist Beth, the teenager whose awful plight sparked my campaign. At one point, after discussions with his team, I helped facilitate an eight-point action plan with families, patients and a former government adviser through an activist group called Rightful Lives. It led nowhere. The sense of being strung along grew stronger.

One month ago, after a particularly brutal tweet, Hancock suggested a meeting. I said I would only do so if he was prepared to take real action since his department was overseeing state-sanctioned torture that made no sense on medical or financial grounds. He responded by saying he shared my frustration over snail-like progress. ‘I haven’t got a magic wand but I do want to solve this and I’m up for radical solutions if they work.’

When we met, I was surprised to find waiting a second minister and several key officials. They briefed me on what they were doing and shared data. I was pleased they had compiled comparative figures on regional incarceration rates, but argued to solve this long-running problem would need tenacious leadership from the top along with firm pressure on local commissioners failing on their jobs. I also pointed out it was discriminatory to define autism as a mental disorder under the law, which entrenched bigoted attitudes from the top while making it simpler to consign such patients into psychiatric prisons.

After consultation with Rightful Lives, I sent through more proposals. Hancock was admirably open to fresh suggestions and admitted he had not fully appreciated the symbolic importance of the legal definition. Now he is announcing new measures including a review and discharge plan for everyone incarcerated within 12 months, release of comparative regional data, separation of autism from mental health law, a pledge to free the first 400 people in five months and possible appointment of a powerful ‘tsar’ to drive the release programme.

These are significant steps. But there have been several false dawns. People need specialist support to live in their own homes while detained patients are often left traumatised. There are many more things needed such as better social care funding, ring-fenced budgets, decent housing and crisis support to fix problems confronting people with autism and learning disabilities so they can enjoy fulfilling lives. Ultimately, the care system must be based on respect and trust, revolving around patients and families rather than bean counters, bureaucrats and doctors. We need acceptance of shared humanity, not incarceration in hellholes.I am left pondering Hancock’s action.

It is to his credit that he responded to attack by reaching out for solutions. Yet was it really driven by dismay over vile events taking place inside the health system? Or simply a bid to restore his own battered reputation? Perhaps just an opportunistic ploy to stymie criticism before an election in which the NHS will play a central role? Yet ultimately, does it matter why the proposals are introduced if – and that remains a big if – they help free people from abusive detention?

Perhaps this issue proves democratic politics based on popular consent remains a dynamic and progressive force. The alternative is too grim to contemplate: that people with autism and learning disabilities might be abused as political props in an election. Let us hope Hancock is finally opening up pathways to freedom and preventing more citizens ending up traumatised behind locked doors after seeking help. For if this initiative fades away after an election, whoever wins, the fury will be even greater.

Categorised in: Disability, Health, home page, Public policy