winterbourne 180x120The families of the people who were abused at the former Winterbourne View hospital have signed an open letter to Prime Minister David Cameron expressing their anger at the “painfully slow” rate of change towards improving care for people with a learning disability.

Their call comes on the fifth anniversary of the BBC Panorama documentary, which uncovered the abuse at Winterbourne View, and eventually led to the conviction of 11 people for their crimes.

The open letter, signed by family members Steve Sollars, Ann Earley, Wendy Fiander and Claire and Emma Garrod, called again for an end to institutions like Winterbourne View. 

“Despite clear commitments and plans from government and the NHS, today, around 3,500 people, including over 160 children, are still stuck in places like Winterbourne View; often hundreds of miles from home, and at risk of abuse. Lives have even been lost,” the letter said.

“The rate of change has been painfully slow, and people with a learning disability and their families continue to suffer as a result. Government and the NHS must end this outdated model of hospital care and tackle the inappropriate use of restraint, seclusion and anti-psychotic medication, which is devastating lives.”

The families were supported by Dr Margaret Flynn, author of the Winterbourne View Serious Case Review; Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation.

Further figures from the Learning Disability Census 2015 revealed that of the 3,000 patients receiving inpatient care included in the Census:

72% had received antipsychotic medication, yet only 28.5% were recorded as having a psychotic disorder

1,670 had experienced one or more incidents (self-harm, accidents, physical assault, restraint or seclusion) in the 3 months prior to census

The average length of stay in an institution is 4.9 years

670 people are 100 kilometres or more from home, an increase of 17% year-on-year.

The families of those abused, along with Mencap and The Challenging Behaviour Foundation, have campaigned for better care for people with a learning disability since the documentary was shown, but these figures show that very little has changed.

Ann Earley’s son Simon was one of residents who faced abuse at Winterbourne View. Simon is now living back in his local community receiving good care which is tailored to him. “It was only when we were visited by two of the Panorama team that I learned of what had happened to Simon and fellow residents of Winterbourne View,” said Ann. “They told us Simon had been subjected to abuse and they had footage and documentary evidence to prove it. I’ll always remember seeing the footage – the disbelief. I was utterly speechless to see the cruelty, the physical abuse, the mental torture and the systematic nature of it all.

“Five years on Simon is thankfully doing a lot better. He is living in his own house and has become a central part of his community. Simon is now safe and living a full and happy life. All this, and his package of care now costs about half as much as it did when he was at Winterbourne View.

“I am devastated that 5 years on from Winterbourne View people with a learning disability are still stuck in inpatient units like Simon was, and families are still forced to battle a system of care that is outdated. It breaks my heart every time I see a photo of someone who is shut away, far from home or hear the distressed voice of a parent.  

“After everything that Simon went through, after all the things that have been said by those in power, it is unforgivable that things have not changed for so many people.”

Five years of failure

In a joint statement, Tregelles and Cooper said: “Five years on, despite all the promises, reports and action plans since Winterbourne View, the number of people with a learning disability in inpatient units has not changed, and it is appalling that the number of children in these places has increased over the last year.

“People with a learning disability and their families have endured nearly five years of failure by national and local government, and the NHS, to bring about meaningful change for the 3,500 people in in-patient units. Many of these are far from home at increased risk of abuse and neglect, with their families still fighting to bring loved ones home.

“NHS England recently announced a 3-year closure programme. This means that the right community-based support should be being developed for people with a learning disability and behaviour that challenges. But it means nothing until families see change on the ground.

“It is vital there is action now for the people currently stuck in these units, and those who are being inappropriately medicated and restrained. There must be independent checking put in place to make sure that change is real and rapid.  

“The Panorama expose of Winterbourne View created a rare opportunity to focus attention on tackling these outdated services, which are failing people with a learning disability and their families, and to get care right. We cannot, must not, waste any more time.” 

Rt Hon Norman Lamb MP, Former Minister of State for Care, added that the lack of progress was a “shocking indictment” of the health and social care system: “When I was Care Minister I was always deeply shocked by stories of families whose loved ones were stuck in places like Winterbourne View.  I spent much of my time trying to make a difference, trying to get the system to work better and to get the right support in local communities. In March 2015, we also published proposals in a green paper to give new powers to people with learning disabilities and their families to decide where they were cared for, and power to challenge decisions about their care. Sadly, the government has still not legislated to introduce those powers, and there seem to be no plans to do so in the near future.

“It is deeply frustrating that five years on from Winterbourne View we are still yet to see the change needed for this group of vulnerable people.

“What is clear to me is that hospital settings like Winterbourne View mean people with a learning disability and behaviour that can be described as challenging are too far from home, for too long, at an increased risk of abuse. It is a shocking indictment of our health and social care system that there has been such a failure to action change. People need to be moved out of these places and into more appropriate care in community settings, where they will be able to live in the way them and their families choose.”