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Making Transforming Care work for autistic people

Tim Nicholls, Policy Manager at The National Autistic Society, discusses their latest report, Transforming Care: our stories, which makes six key overarching recommendations to improve inpatient care and help get autistic people out of units and into the community.

Download a PDF of this report

Author: Tim Nicholls

What needs to change to make Transforming Care work for autistic people

Around 2,500 people on the autism spectrum, with a learning disability or both are currently in an inpatient mental health hospital. NHS England’s Transforming Care programme aims to reduce the number of people with a learning disability, autism or both in inpatient units by up to a half, by March 2019.
 
Over 40% of this group are autistic – a proportion that has increased since data collection began in March 2015. We are concerned that this means that autistic people in inpatient care are not feeling the potential benefits of Transforming Care and that community services are not equipped (or simply do not exist) to meet the needs of autistic people with complex needs.
 
We wanted to find out more about the experiences of people, and families, covered by Transforming Care. How did their situation come about? What care did they receive? Were they getting closer to being discharged? And what services were available to them?
 
Working with Mencap and the Challenging Behaviour Foundation, we identified and interviewed thirteen families three times over the course of a year. Each time, we found out more about their relative’s journey. Despite their individual differences, they all shared similar concerns that their loved ones wellbeing was deteriorating and their needs were not being met.
 
Our report, Transforming Care: our stories, outlines serious failings of care including:
 
incorrectly supplying heavy doses of anti-psychotics when no psychosis was present
unnecessary use of restraint
a lack of staff trained in autism.
 
It also shows that the biggest challenge facing the families was the lack of appropriate services available in the local community. The right community based service and support for people on the autism spectrum, with a learning disability or both, can help ensure that people do not face long stays in inpatient units or mental health hospitals, and importantly can help prevent admission in the first place.
 
To make the Transforming Care programme a success, we have made six key recommendations:
 
1. The Government should urgently strengthen the law around the rights of people in (or at risk of) inpatient care. 
2. NHS England must commission more specialist community-based services in line with the Transforming Care Service Model, and closely scrutinise individual plans for discharge to make sure they are acted on.
3. Local health and social care commissioners must commission community-based support and inpatient services, in line with the Service Model, including to prevent admission in the first place. 
4. Inpatient care providers must ensure their staff are properly trained and their practices do not rely on excessive restraint and medication.
5. The Care Quality Commission must robustly inspect and regulate inpatient services. 
6. Professionals working with people with a learning disability, on the autism spectrum, or both must listen to individuals and their families and ensure their voices are at the centre of all decisions about their support.
 
Underneath these overarching recommendations, many things need to change – and we have outlined 43 separate actions that the Government, NHS England and others need to take to make the system work. We’ll be raising all of these recommendations with them.
 
Autistic people have the right to the standard of care in health and community settings that maintains their wellbeing – and the Transforming Care programme has that aspiration. But our report shows that need to not only aspire for better, but also deliver it.

Date added: 3 October 2017