Official data just published has confirmed that there are still 2045 people with a learning disability and/or autistic people in mental health hospitals and the government has failed to meet their own target to reduce inpatient numbers by 50%.
The charity Mencap estimates at the current rate of change they won’t meet it until 2030. This failed target is yet another broken promise to people with a learning disability and autistic people and their families to transform care following the abuse scandal at Winterbourne View in 2011.
These are not just numbers they are people - people who are not living in their local communities with the support and services they need but are instead detained in hospitals. Mencap’s analysis of data published by NHS England today, shows how far off the government still is from meeting their overall target and also the shocking differences in progress across local areas in England as well.
Nearly three quarters (71%) of local areas have failed to bring inpatient numbers down to the required level. Using NHS England data from 42 Integrated Care Systems (ICS), Mencap’s interactive heatmap reveals a deeply concerning postcode lottery.
Areas with the highest adult inpatient rate include:
- North East & North Cumbria
- Birmingham & Solihull
- Lancashire and South Cumbria
- Lincolnshire
- Shropshire, Telford and Wrekin
The charity’s analysis shows huge variation in progress to reduce the number of adults with a learning disability and/or autistic people in mental health units. In 2019, the government set a target in the NHS Long-term plan for the adult inpatient rate in local areas to be no more than 30 adult inpatients with a learning disability and/or autistic people per million adults in the population.
Yet current rates across the 42 ICS areas are ranging from 19 to 73 adult inpatients per million. Shockingly, for nearly a third (31%) of local areas, their adult inpatient rates are not changing or are actually increasing, rather than going down.
Some, such as North Cumbria and Birmingham & Solihull, not only have the highest adult in-patient rate but have increased their adult inpatient rate in recent years. Others, such as Frimley, and Bath and North East Somerset, Swindon and Wiltshire, were meeting the target in 2019 but over time have increased the number of inpatients and are now over the target.
Currently, over 2000 people with a learning disability and autistic people are locked up in mental health hospitals, where they are at increased risk of abuse and neglect and the average length of detention is nearly 5 years. Many are there not because they need to be in a mental health hospital but because of a failure to provide the right community support.
Once admitted, people can get stuck for years on end in places not appropriate for their needs, with many subjected to over-medication, inappropriate restraint, and seclusion, and too often experiencing lasting trauma, which could be avoided if the right support was available in the community. For the first time, Mencap’s new data analysis shows how where you live impacts your chances of being locked up for years on end in a mental health hospital.
Martha*, mother to Anna*, lives in an area which has one of the highest adult inpatient rates well over the target. She has spent years trying to get her daughter the right support in the community.
“My daughter has a learning disability and is autistic. She has been detained in inpatient units for over ten years and has spent most of her adult life in institutionalised care.
“At one point she was briefly discharged back into the community. But it was still very restrictive care.
“It failed to give her the personalised care she needed, and she was readmitted back to hospital. She never self-harmed when she still lived with us in the community but does now since being admitted to hospital.
“Her injuries are shocking to look at – it breaks my heart to see her suffer.” Thousands of families have to deal with the torment of having loved ones locked away, and many have been tirelessly fighting the system to try and get them released
Leo Andrade, a mother from North Central London, an area that has recently met the target, spent 7 long years fighting to get her son Stephen discharged from a mental health hospital. Stephen has autism and a learning disability and was detained in mental health units due to a lack of appropriate community support. “We were initially told it was only going to be for an assessment and Stephen would be out in 18 weeks,” she said.
“We know now that was a lie. He was trapped in a unit where staff didn’t have the right skills around supporting people with autism and learning disability and who could give my son the support he needed. They mistreated and abused my son.
“He had numerous broken bones: ankles, wrists, fingers and a broken clavicle. Stephen was also drugged with 8 different antipsychotics a day.
“Often, he was kept in a strait jacket for up to 12 hours a day - sometimes longer. It was totally the wrong place for someone with Stephen’s needs. It begs belief that anyone thought this could be an appropriate place for my beautiful innocent son.”
Another parent, Isabelle, opens up about how her son Matthew, 23, was needlessly subjected to neglect and abuse in a unit: “My son thought he was in prison.
“To us it felt like he was being punished for having a learning disability and being autistic. Rather than behaviours being seen as communication of what he might not be coping with, or struggling to understand, my son was medicated and contained.”
Despite such a worrying picture across the country, there are some local areas including the Black Country, Staffordshire & Stoke-on-Trent, and Leicester, Leicestershire & Rutland making the biggest improvements in reducing their adult inpatient rates. Wendy Ewins, Head of Commissioning, Case Management and Key working for people with a learning disability and autistic people at Black Country Healthcare NHS Foundation Trust, has made huge progress helping people avoid inappropriate admission to mental health hospitals with an innovative approach.
She said: "It’s crucial to provide the right support at the right time to help prevent people from reaching crisis. But where people do reach crisis, we need to make sure that the right support is in place to then prevent inappropriate admission to mental health hospitals, where people can get stuck and be left traumatised by their experience.
“In the Black Country, we’ve worked hard to improve the care we offer to people who experience crisis. We now have teams on call 24/7 to support families and aim to reach people within 2 hours.
“We also have a crash pad - a place in the community where people can access round the clock care whether that’s for a few hours or a few weeks. This agile approach means people who would historically end up in hospital, don’t.”
Jackie O'Sullivan, acting CEO at learning disability charity Mencap said: “It’s bitterly disappointing that the government have failed to meet their target to reduce the number of people with a learning disability and/or autistic people detained in mental health units by 50% and at the current pace of change won't achieve this until 2030.
“Our analysis highlights a brutal postcode lottery for people in England. Families across the country are fighting to get the right support in the community for their loved ones but where you live can make the difference between being detained for years or getting the support to live a good life in the community.
“We know many people with a learning disability and autistic people trapped in units right now don’t need to be there and are being put at increased risk of harm and abuse, when they should be receiving the right support in the community. People must be supported to live fulfilling lives in the community and not be shut away out of sight. We need urgent investment in the right community support including suitable housing and social care.
“There must be a revised and strengthened action plan, as a matter of urgency which sets out how the government will bring this brutal postcode lottery and national scandal to an end.” Mencap and the Challenging Behaviour Foundation, along with people with lived experience and other organisations, have launched a petition calling on the government to stop the inappropriate detention of people with a learning disability and autistic people and bring this human rights scandal to an end.
Viv Cooper OBE, CEO of the Challenging Behaviour Foundation said: “Our society claims to have a system of support to enable people with disabilities to exercise their human rights to live fulfilling lives within their local community, accessing the support and services they need.
“We know this is possible, and we know how to do it. Despite this, “the system” continues to channel people with learning disabilities and autistic people to crisis and inappropriate inpatient services, where they are at increased risk of harm, are unable to thrive and where they become trapped and traumatised.
“The Government, despite years of words of “commitment” to transform care, has failed to reach the latest in a long list of targets they set themselves. The consequences of this failure are not borne by the politicians and senior NHS England managers who are responsible, but by children and adults with learning disabilities and autistic people and their families.
“It is time for the Government and NHS England to accept that they need to take a different approach and learn from the past decade. They must co-produce solutions with people with lived experience and key stakeholders and incentivise and invest in community support and services to prevent inappropriate inpatient admission and enable timely and successful discharges.”
