This week is the seventh anniversary of BBC Panorama’s exposure of the systematic abuse of people with learning disabilities at Winterbourne View hospital in Gloucestershire.
The abuse viewers saw routinely taking place at the NHS-funded assessment and treatment unit (ATU), seemed like a watershed moment. A government investigation and official report promised that lessons would be learned and committed to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.
Since 2011, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda introduced in 2011, which developed new procedures aimed at reducing admissions to hospitals like Winterbourne View. But as of the end of April 2018, official figures show that more than 2,000 learning disabled or autistic people are still living in such units. And although 130 people were discharged in April, 105 others were admitted, even though the investigation into Winterbourne View concluded that patients at hospitals for adults with learning disabilities and autism patients “are at risk of receiving abusive and restrictive practices”.
Last year it was the abuse of adults with learning disabilities at residential care homes in Devon, run by specialist care provider Atlas Project Team. And in February this year, a review highlighted the mistreatment of adults at a National Autistic Society care home in Highbridge, Somerset.
This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population. With 1.5 million learning disabled people in the UK, including my sister, Raana, that’s unacceptable. Yet this report was not the first to show how people die earlier due to poor care. Mencap’s Death by Indifference and the Department of Health-funded confidential inquiry into the premature deaths of people with learning disabilities in 2013, both concluded that many of these deaths were avoidable.
The NHS investigation was partly a response to the preventable death of 18-year-old Connor Sparrowhawk in 2011 at a Southern Health NHS foundation trust ATU. The subsequent campaign for justice sparked an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin. And still people with learning disabilities are dying unnecessarily, leaving their grieving relatives having to battle to get answers, let alone justice, and to raise money for legal representation at inquests (families do not get legal aid for inquests).
Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, including Richard Handley, Danny Tozer and Oliver McGowan. Andy McCulloch, whose autistic daughter Colette died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who have lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for a judicial review (families do not get legal aid for inquests). If there is any hope, it is in the growing momentum behind grassroots campaigns such as I Am Challenging Behaviour, which protests against the unjust labelling of people with learning disabilities and Rightful Lives, which focuses on people’s human rights.
It is appalling that seven years after Winterbourne View, learning disabled people still get poorer care. Although some die earlier than they should, these avoidable deaths aren’t properly investigated.
For all the talk of learning lessons, the biggest one of all is that if you want a national scandal to go unnoticed, make sure it involves someone with a learning disability.
• Saba Salman is editor of Made Possible, essays on success by people with learning disabilities. unbound.com/books/made-possible