adults, clipboard, discussionThe appalling situation faced by autistic people stuck in inappropriate Assessment and Treatment Units (ATUs) has been brought to the nation’s attention in the last week, following a series of powerful and distressing newspaper reports. 

Investigations by the Mail on Sunday, The Times and Sky News and others, revealed distressing stories of unnecessary use of seclusion, restraint and over medication. We have raised this unacceptable situation with the Secretary of State for Health and Social Care and NHS England and will continue to campaign for the right community services to be put in place, so people can live close to their family and friends

Background

In 2011, shocking abuse was uncovered at Winterbourne View Hospital, an inpatient unit for people with learning disabilities. This scandal led to the acknowledgement that there are over 2,000 people who are autistic or have a learning disability in inpatient settings – largely because services to support them in the community simply do not exist.

In 2015, the Government and NHS England launched Transforming Care which made an important promise to thousands of people who are autistic or have a learning disability: they would make sure the right services were available in the local community so people were not stuck in inappropriate in-patient hospitals.

But since then the number of autistic people living in these units has actually increased by almost 40% - and we’ve continued to hear concerning stories of unnecessary use of seclusion, restraint and over-medication, as we recounted in our 2017 Transforming Care: our stories report. It’s clear that Transforming Care, despite its welcome aims, has not succeeded for autistic people. 

What’s happening now

Following high profile investigations in the media, Matt Hancock, the Secretary of State for Health and Social Care, this weekend recognised the scale of the problem and ordered the Care Quality Commission to conduct an in-depth review. He also reaffirmed the Government and NHS England’s 2015 promise.

This is welcome recognition but real change will only happen if there’s a change in funding arrangements. This means NHS England finding a new way to put the millions spent on the wrong type of care into the right community services, so people can live close to their family and friends - and free from trauma, over-medication and frequent restraint. 

We have raised this with NHS England, including encouraging our supporters to respond to their recent consultation on its upcoming Long Term Plan. As mentioned in the Mail on Sunday this week, we’ve also reached out to Matt Hancock, writing to him most recently two weeks ago to encourage him to visit an Assessment and Treatment Unit without any prior notice. He needs to see first-hand the reality of the care being offered to some of the most vulnerable people in society.

We will continue to campaign on this incredibly important issue with families and advocates, including encouraging MPs to act, helping journalists with their investigations, and sharing stories through our networks.

How you can help

Our campaigns team is working with a number of families whose sons and daughters have been - or are - stuck in ATUs, and recently met to discuss what actions to take next. We will share more information soon, including how you can be involved in campaigning. 

What we’ve said in the media 

Our media team have been helping journalists to explore and report on this issue, introducing them to families, briefing them and providing comments, including this:

Jane Harris, Director of External Affairs at the National Autistic Society, said: "More and more autistic people are stuck in inappropriate Assessment and Treatment Units miles away from their friends and family – and being subject to traumatic and unnecessary seclusion, restraint and over-medication.
 
"NHS England promised to address this scandal in 2015, by moving people into specialist support in their own communities. But the number of autistic people living in these units has actually increased by almost 40% in this period. Their families too often feel powerless to challenge the people making decisions about their care, even if it’s clear that their sons and daughters are becoming increasingly distressed and traumatised. This is unacceptable.
 
“We have written to the Secretary of State for Health and Social Care to encourage him to visit one of these units unannounced. He needs to see first-hand the reality of the care being offered to some of the most vulnerable people in society.

“NHS England must live up to its promise and address this appalling situation. But this won’t happen without changing funding arrangements.
 
“NHS England has announced 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 community services so people can live close to their family and friends - and free from trauma, over-medication and frequent restraint.”

Further information