Transforming Care: our recommendations
  • In depth research with families confirms what the statistics are telling us about unacceptable inpatient care for people on the autism spectrum, with a learning disability or both
  • The National Autistic Society is calling for urgent improvements to be made to the implementation of NHS England’s Transforming Care programme after families’ experiences expose serious failings
  • The interviews with families, which began in 2016, reveal concerning cases in inpatient care, including incorrect medication, unnecessary use of restraint and an absence of staff trained in autism
  • The National Autistic Society’s report has developed six key overarching recommendations to be taken forward to improve inpatient care and help get people out of units and into the community

The National Autistic Society is calling for urgent improvements to be made to the implementation of NHS England’s Transforming Care programme after families reveal serious failings within inpatient care and setting up the right support up in the community. Since September 2016, our charity and Mencap, with the support of the Challenging Behaviour Foundation, worked together to interview the families of individuals in, or at risk of being in inpatient care. 

Thirteen families across England, of different ages and backgrounds and with very different needs were interviewed. However they all shared similar concerns that their loved ones wellbeing was deteriorating and their needs were not being met. Our Transforming Care: our stories report outlines serious failings of care including incorrectly supplying heavy doses of anti-psychotics when no psychosis was present, unnecessary use of restraint and 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. 

David, the father to 35 year old Stephen, who has Asperger syndrome has ongoing problems getting appropriate care and treatment for his son:

Stephen has often had to be hospitalised due to his behavioural problems, but as he does not have a learning disability, he does not receive any autism support whilst in hospital and is treated as if he has a mental health problem.

“This is exacerbated by staff who have little or no autism training and have to resort to restraining him or putting him in seclusion because they do not understand the triggers that cause the increased number of behavioural episodes.”

“Because of his Asperger’s, he falls between the gaps of health, community mental health and social services with no one ultimately taking responsibility for defining his care package and finding a suitable home in the community that meets his hopes and aspirations. The process has taken nearly three years thus far and we are still no nearer defining, let alone finding that place.”

Tim Nicholls, Policy Manager at The National Autistic Society, said:

In 2015, the Government and NHS England made an important promise to improve the lives of thousands of people on the autism spectrum, with a learning disability or both, who didn’t need to be in inpatient care, by making sure the right services are available in the local community. But their families and other advocates are still often having to battle for many months or years to bring them home. To make the Government’s aspiration a reality, we need to see stronger legal rights so that people can leave hospitals and move into the community as soon as they are able to. Commissioners also need to make sure the right services exist in local areas, as no-one can leave hospital if we aren’t creating the right support for people to live in their own communities.

Autistic people have the right to the standard of care in health and community settings that maintains their wellbeing. We need to not only aspire for better, but also deliver it.”

To make Transforming Care 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 CQC 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.

The National Autistic Society will be taking these recommendations forward with these organisations to try an improve Transforming Care for all children, young people and adults on the autism spectrum, with a learning disability or both.

Follow this link to read the full report.

The National Autistic Society also worked with Mencap and the Challenging Behaviour Foundation to conduct the interviews and compile this report. We have also produced resources to help support people on the autism spectrum, with a learning disability, or both get involved in local decisions about Transforming Care.

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