No Dignity, No Freedom, No Life

Analysis from the learning disability charity Mencap based on NHS data and current trends reveals that the number of people with a learning disability and/or autistic people locked away would need to reduce by 600. Based on the current rate of progress, a 50% reduction won’t be achieved until at least August 2028. On average the reduction in the number of patients each month would need to triple.   

People with a learning disability and/or autistic people are at increased risk of abuse and neglect in these hospitals.

• There are currently more than 2,000 people with a learning disability and/or autistic people being detained in inpatient mental health hospitals, with an average length of stay over five years.  

• The government pledged that by March 2024 they would achieve their target of reducing the number of people with a learning disability and/ or autistic people in mental health hospitals by 50%.  

Sara’s son Josh, 19, has autism and ATR-X Syndrome, a rare genetic condition that causes intellectual learning disability. Josh lived with his family in East Yorkshire, but when Sara asked for support from social services 18 months ago, her son was sectioned and locked away in a hospital over 100 miles away from home. 

Since then, Josh has been detained in three different hospitals and despite being approved for discharge into the community by the local authority, he remains trapped as there’s no appropriate social care support for his needs in the community.  Sara says:  

“Throughout Josh’s life my biggest fear was him going into a home or a hospital, and the first time I asked for help he went into the system and was sectioned and abused. Even though he is ready to be discharged Josh remains locked away, hundreds of miles from home. Why is it easier to lock someone up and hide them away than to support them to live a fulfilled life in the community? 

“My son isn’t a criminal and he doesn’t understand why this is happening to him. It feels like he is being punished for having a learning disability. He currently has no education, no friends, no opportunities, and no life. Josh deserves a bespoke care and support package in the community, close to his family, so that he can live a happy and normal life. If I could go back in time, I wouldn’t have asked for help. All this system has done is put my son through hell and destroy my family." 

The national picture also masks a postcode lottery of care around the country. There are 42 Integrated Care Systems (ICSs) across the country, which are local partnerships designed to deliver joined up health and care services to improve lives, Mencap’s analysis has revealed that of these:  

• More than half (60%) of ICSs have not hit the target set for March 2020 for the maximum number of adults with a learning disability and/or autistic people in inpatient units ii  

• 33% of ICS’s are going in the wrong direction with either no change or an increase in the number of people locked away.iii   

• Furthermore, a newly published review by NHS England into the care of people with a learning disability and inpatient units revealed that 41% of patients assessed in 2022 could be supported in the community if appropriate support was in place.iiii  

Dan Scorer, Head of Policy and Public Affairs at Mencap, says:   

“These shocking projections are more than just numbers; they represent people who have been robbed of their dignity, years of their lives and their families put through torment. For more than a decade, the government has repeatedly promised to ‘transform care’ for people with a learning disability and autistic people only to leave them languishing in mental health hospitals at increased risk of abuse and neglect because of a lack of the right social care support in the community.     

“Learning disabilities and autistic people are not conditions that can be ‘treated’. We know these hospitals are the wrong environment for people, and families are tired of ministers burying their heads in the sand and making empty promises. It’s been more than six months since the government published their ‘action plan’ to close these hospitals and develop the right community support, but what credible, alternative provision is available?  

“We’re calling on the Government to urgently review their plan, which, considering our analysis shows how worryingly off-target they are. It is also critical that NHS England, Integrated Care Systems and health and social care agencies work together to drive the change that’s needed to get back on track. While its already too late for many families whose loved ones have lost years of their lives and suffered abuse and neglect in these hospitals, we must stop a new generation being failed.”   

Mencap’s No Freedom campaign shines a light on a human rights scandal that many people have never heard of – over 2000 people with a learning disability or autistic people are being held in inpatient mental health hospitals in England because there is a lack of the right community support. Enough is enough – people should be able to live in homes, not hospitals.  

People can support Mencap’s campaign by sending a message to their MP at www.mencap.org.uk/no-freedom   

Notes to editors:  

Further FAQ’s can be found here: Homes not hospitals FAQ | Mencap 

Notes on the data:  

i Data available from https://digital.nhs.uk/data-and information/publications/statistical/learning-disability-services-statistics. Latest data analysed was published on 16/3/2023.  

• The geographic coverage of the data is England only. Mencap have compiled data from multiple releases for analysis, and projection represents an average across England. The projection is subject to change as new data becomes available.  

• It is based on a linear projection of all available data since 2015 at a yearly basis.  

• The baseline figure for the number of inpatients in March 2015 that is used for the Government targets is 2,890 as set out in a parliamentary question response:  https://questions-statements.parliament.uk/written-questions/detail/2019-03-28/238347. Therefore a 50% reduction would see no more than 1,445 inpatients with a learning disability and/or autistic people in inpatient units at the end of March 2024.   

• Note: original data reported each month gets updated. See table 6.2 in the Assuring Transformation monthly release for scale of retrospective data updates. (As an example, see January 2023 data here: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/at-january-2023-mhsds-november-2022-final)  

• The Government has said that an overall reduction in inpatients of 50% is equivalent to 30 adult inpatients per million (AIPM). Using AIPM we are better able to compare areas with different population sizes. It tells us the number of adults with a learning disability and/or autistic adults in a hospital providing specialist mental or behavioural health care per 1,000,000 adults. Where data is analysed at an ICS level the AIPM figures are used.  

ii The 2020 target was an adult inpatient rate of 37 adult inpatients with a learning disability and/or autistic people per million adult population). Target was set to be reached by March 2020, having been delayed from March 2019, having been set in October 2015.  

iii Adult inpatient rates for all months for ICS data have been calculated based on ONS mid-year population estimates for 2017, as per the March 2015 baseline calculation. Population data for Integrated Care Systems has been derived based on Clinical Commissioning Group (CCG) figures, with old CCGs that have been affected by mergers since 2017 converted to current CCG codes. 

Iiii Safe and Wellbeing Reviews: Thematic review and lessons learned, NHSE, February 2023: https://www.england.nhs.uk/wp-content/uploads/2023/02/PR1889-Safe-and-wellbeing-review-thematic-review-and-lessons-learned.pdf  

Further notes and data available upon request.