adults, clipboard, discussion 

A new National Autistic Society report lays bare the extent of the scandal of autistic people being left behind in mental health hospitals* (including Assessment and Treatment Units) - often miles away from their friends and family and subject to unnecessary seclusion, restraint and overmedication. 

Our report, which was launched exclusively in The Times  this morning, reveals: 

  • 24% rise in autistic people without an accompanying learning disability reported in mental health hospitals since 2015**; 7% increase in all autistic people
  • One in four (28%) autistic people reported in mental health hospitals have been there for five years or more.
  • Four in 10 autistic people reported in mental health hospitals (505) are under the age of 25.
  • 355 autistic people in mental health hospitals have been identified as not needing inpatient care anymore. This is 30% of all autistic people under Transforming Care.

NHS England’s Transforming Care programme has failed autistic people; the upcoming Long Term Plan must help to transfer money from inpatient care to homes in the community. Please sign Kevin Healey’s petition on the Parliament website, calling for an end to the detention of people who are autistic or have a learning disability in mental health hospitals. 

Download the full report

The report is based on analysis of both publicly available and unpublished NHS data**. We found an alarming increase in the number of autistic people reported in mental health hospitals - despite NHS England promising in 2015 to reduce reliance on inpatient settings with its Transforming Care programme, which is set to end in a few months. 

Our analysis of the unpublished NHS data shows a 24% rise in the number of autistic people without a learning disability reported in these hospitals since 2015 (up from 440 to 545) – and a 7% increase in all reported autistic people (up from 1,100 to 1,180). NHS England has told us that these increases may be at least in part due to under-reporting in the early stages of data collection. Nonetheless, far too many autistic people are currently ending up in mental health hospitals. 

Inpatient settings should be avoided wherever possible. If someone in crisis is admitted, their stay should always be short and focused on discharge. But one in four (28%) autistic people reported in mental health hospitals in October 2018 have been there for five or more years; one in five (20%) have been there for between two and five years.       

Of the 2,350 people under Transforming Care, 665 have been identified as not needing inpatient care anymore but are still in hospital. Over half (54%) are on the autism spectrum.  

NHS England’s Transforming Care programme is set to end in March 2019 and aimed to reduce the number of people on the autism spectrum or with a learning disability in mental health hospitals by between 35% and 50% - by moving people into specialist support in their own communities.

What needs to change 

We believe that Transforming Care has failed autistic people. We have written to Simon Stevens, Chief Executive of NHS England, and Matt Hancock, the Secretary of State for Health and Social Care, to demand that:

  1. Government and NHS England sort out the funding problems that makes it easier to spend money on hospital care than on good quality care in the community. At the moment, care in mental health hospitals is paid for by the NHS, whereas support in the community is covered by local authorities. For someone to move into the community, and near their home, councils need to pick up the cost. Unless the upcoming NHS Long Term Plan changes the funding model, people will be stuck in hospital and at risk of being traumatised by the wrong care.  
  2. NHS England puts in specialist autism teams in the community, to stop people going into mental health hospitals. These teams would run diagnostic services and support some people directly, as well as training and working with other services in the area to make sure they have the autism expertise that they need.
  3. The Government make sure mental health law reflects the needs of autistic people, including removing autism from the definition of mental disorder in the review of the Mental Health Act.
  4. The Secretary of State visits a mental health hospital unannounced, so he can see first-hand the reality of the care being offered to some of the most vulnerable people in society. Caroline Dinenage, Minister of State for Care, has just replied on behalf of Matt Hancock, and confirming she will be accompanying the Care Quality Commission on an upcoming inspection of a provider.  

Reaction

Jane Harris, Director of External Affairs at the National Autistic Society, said: "This alarming data shows that more and more autistic people are getting stuck in mental health hospitals. In many cases they’re miles away from their family and friends. We are deeply disturbed by stories of unnecessary use of seclusion, restraint and over-medication – we need Government and NHS England to act decisively now. 

"NHS England promised to address this scandal in 2015, by moving people into specialist support in their own communities. But NHS data shows that the number of autistic people without a learning disability reported in mental health hospitals has actually increased by almost a quarter in this period. Their families too often feel powerless to challenge people making decisions about their care, even if it’s clear that their sons and daughters are becoming increasingly distressed and traumatised. 

“We can’t address this appalling situation without changing funding arrangements. NHS England has promised that autism will be a priority in its upcoming Long Term Plan and that must include a new way to put the millions spent on the wrong type of care into the right care, near family and friends.”

Further information

Read more stories about autistic people who’ve been stuck in inpatient care in our Transforming Care: our stories report.

For information about what to do if an autistic family member is at risk or has been admitted to or discharged from a mental health hospital, visit our page on autism and mental health.

Bringing us Together have produced this very useful Survival Guide for care and treatment reviews. 

Please sign this petition on the Parliament website, calling for an end to the detention of people who are autistic or have a learning disability in mental health hospitals.

Read our recent blog, setting out what’s wrong with mental health hospitals and what we can all do to support the vital campaigns to change this unacceptable situation.

We are looking to increase the direct support and guidance we offer to families whose loved ones are stuck in mental health hospitals and are exploring ways we could fund this as quickly as we can. 

References

* This covers all inpatient mental health hospitals, including Assessment and Treatment Units, secure hospitals, forensic units and others. The NHS’ Assuring Transformation data cover all these settings.

** NHS Digital. Assuring Transformation: Learning Disability Services Monthly Statistics (October 2018). Published 15 November 2018. Accessed 16 November. 

The publicly-available data has been supplemented by new analysis of NHS Digital’s Assuring Transformation data undertaken by NHS England. These new, and previously unpublished figures, reflect the revised and most up to date information from commissioners on the numbers of people on the autism spectrum, with a learning disability, or both in mental health hospitals from March 2015 to October 2018. The publicly-available Assuring Transforming data tables on autistic people in mental health hospitals since March 2015 are not retrospectively updated and so suggest a much higher increase in autistic people. This shows that the number of autistic people – with or without a learning disability – in mental health hospitals was originally underestimated and has continued to be in the publicly-available statistics.

NHS England has advised that some commissioners were not reporting autistic patients in the early stages of the data collection. They say it’s not clear to what extent the apparent increases represent real term increases – and that it’s likely that the increases are at least partly due to improved reporting of autistic people. The National Autistic Society believe this data issue and the apparent increase warrant proper investigation.