Yet another target missed 13 years after Winterbourne View scandal
The government has “woefully” failed to meet its target of halving the number of autistic people and people with learning disabilities in mental health hospitals.
In 2019 the NHS committed to halving the 2015 level of 2,905 people in such settings by March this year in favour of supporting them to live in the community.
However, latest figures from NHS England show there were 2,045 still living in hospitals by the end of February.
More than half of these had been continuous inpatients for more than two years. The average length of stay is five years costing an average of £237,000 a year, according to a recent analysis by Mencap and ITV News.
The Challenging Behaviour Foundation accused the government of making “empty” commitments.
It’s chief executive Viv Cooper said: “Breaches of human rights are taking place, with many people with a learning disability and autistic people being sent to environments that do not and cannot meet their needs.
“Many remain there for years on end, away from their family and friends and at increased risk of harmful restrictive practices, including restraint and over-medication. The human and financial cost is enormous and indefensible.
“We need strong leadership, political will and a structured and resourced change management programme to transform care – all of which currently appear to be lacking.”
The National Autistic Society said it was a “scandal” that the number of autistic people without a learning disability in mental health hospitals had increased by 100 per cent since 2015 to 900 at the end of last year.
A spokesperson added: “In mental health units, autistic people experience inconsistent and high levels of restraint, seclusion and segregation. This is a deprivation of liberty which poses serious human rights concerns. The Mental Health Act 1983 must be amended as soon as possible, so that autistic people can no longer be detained just because they are autistic. There must also be significant, long-term funding for community mental health and social care services.”
BASW England, which is calling for systemic change through its Homes not Hospitals campaign, also criticised the missed target.
It has joined a new campaign along with a range of other organisations calling on the government to come up with a new action plan to stop institutionalising people.
Professional officer Liz Howard said: "“Successive governments have woefully failed to deliver on promises made since 2011. There have been numerous reports and inquiries highlighting the shocking abuse of human rights that individuals and families are subjected to, identifying the key issues that need to be addressed, yet progress is painfully slow.
"What is needed now is action and a different approach. We call on the government to invest in the right community-based support and housing to prevent people from reaching crisis and to adequately resource local authorities to make the 'named social worker' a reality.”
Of the 2045 people currently in inpatient units, 83 per cent are receiving active treatment meaning “discharge may not yet be appropriate” and 37 per cent are in the criminal justice system, according to the Department of Health and Social Care.
A spokesperson said: “The government is committed to ensuring that autistic people and those with a learning disability have the right support to lead ordinary lives in their communities, which can be a complex process and needs to be tailored to individual needs.
“Whilst we have made significant progress reducing the number of people with a learning disability in mental health hospitals, we know there is more to do, particularly for autistic people.
“In 2023/24, we invested an additional £121 million to improve community support, and we recently published guidance setting out key principles for how NHS bodies and local authorities should work together to support people to be discharged from mental health inpatient services.”
Case study
Emma Austin-Garrod’s autistic brother Ben was among victims of abuse by staff at Winterbourne View.
Speaking in a BASW England webinar on World Social Work Day last month, she said: “He spent 11 months in an inpatient service because his needs weren't met in the community. The impact of that on him is lifelong. He’s hugely traumatised by the period of time that he spent in an inpatient service.”
Emma said Ben’s experience was “sadly not remotely unique”.
She added: “The system fails people with learning disabilities on a daily basis and shoehorns them into services that aren't appropriate.
“People often have to get to crisis before they're eligible for support. Providing good support early on prevents crisis and stops the need for that support being more significant than it needs to be.
“There's a need to get the right support, but at the moment funding is being spent in the wrong places. It’s trying to fit people into existing services instead of thinking of ways in which services can fit around them.
“Unfortunately, if the needs of people with a learning disability are not met in their local community, they can end up being detained in an inpatient unit under the Mental Health Act.
“These units restrict the person, are unlikely to be in their best interest and can be long distances away from their family, their local communities, their friends and everything that is familiar to them. It can be really difficult for a person to get back home from an inpatient service.”
The Challenging Behaviour Foundation asked people with learning disabilities and autism for their views on being in an inpatient unit.
“They felt hopeless, that no one cared and nothing was going to change,” said Emma. “A lot of people are in hospital for a long time just because they're waiting for somewhere. They don't have anywhere else to go.
“They shared how they found it really restrictive and led to being institutionalised, which makes it even harder to return to the community where they belong.”
Emma said with the right community-based support in place her brother is now thriving.
“He has been quite fortunate in terms of the adaptations made around him to allow him to live in the community and to allow him to live successfully in the community.
“He lives in his own home with a dog, and with the support that he needs. He enjoys his life. He lives next door to people who enjoyed having him around. It has been massively important to him and his mental health. But it has also been really important to us as a family – it's allowed us to move forward to support him to live the life that he deserves.”
Emma urged the government to live up to its promises, adding: “If we don't have people with a learning disability as part of our communities, then we are losing out on what I have always experienced as the sister of a person with a learning disability and the brilliant person that Ben is and the brilliant people that he has grown up alongside as well.”
Background
The government pledged to act to reduce the number of autistic people and people with learning difficulties in hospitals after the Winterbourne View Hospital Scandal.
In 2011, BBC’s Panorama exposed horrific abuses of patients by staff at the inpatient unit.
It led to widespread condemnation of people stuck in such settings due a lack of community support.
Inspections of 150 hospitals and care homes by the Care Quality Commission uncovered widespread poor practices in in-patient mental health units.
The government responded with Transforming Care: A National Response to Winterbourne View Hospital, promising that people in hospital would be moved to community-based care as soon as possible and no later than 1 June 2014.
The target was missed, with a report by Sir Stephen Bubb finding more people were being admitted into such settings than discharged.
In 2019, the NHS Long-Term Plan committed to halving the number from the 2015 level by March 2024.
This target was reaffirmed by the government in its Building the Right Support Action Plan.
In 2022 the Care Quality Commission’s Out of Sight Who Cares? report said too many autistic people and people with a learning disability were still languishing in mental health hospitals.
It said they often did not receive therapeutic care and despite the Winterbourne View scandal, were still subjected to overly restrictive interventions potentially breaching their human rights.
The way forward
A failure to put funding in the right places prevents autistic people and people with learning disabilities living successfully in the community, according to the Challenging Behaviour Foundation.
As a result, they end up institutionalised unnecessarily and deprived of the life they deserve.
The charity has produced an action plan calling on policymakers to address failings. Among its key recommendations is providing a named social worker for all children, young people and adults with a learning disability.
Other reforms asked for by the Challenging Behaviour Foundation include:
- Ensuring all children with a learning disability have access to communication and behavioural support
- Expanding access to a key worker scheme from 0 to 25
- Developing community-based alternative accommodation
- Providing 24/7 specialist support teams in every area
- Ringfence funding for developing housing for people with a learning disability in every local authority