The following exchange (written question and answer) took place in the Commons on 19th April, and should be of interest the family carers of any child or adult with a learning disability or ASD.
In recent months charities (notably Autistica) and campaigners have attempted to highlight the issue of premature mortality – an issue which some carers may previously have been reluctant to confront or raise.
The ministerial response indicates that (as is often the case with issues relating to learning disability and/or autism) centrally collated data is not available; and that relevant reviews etc. are only just underway. We will bring news of any further developments…
Q.
Asked by Luciana Berger (Liverpool, Wavertree)
Asked on: 19 April 2016
Department of Health
Autism: Death
To ask the Secretary of State for Health, what steps his Department is taking to reduce premature death among people (a) with autism and a learning disability and (b) with autism and no learning disability.
A.
Answered by: Alistair Burt
Answered on: 25 April 2016
“Information is not collected centrally on how many clinical commissioning groups collect prevalence and standardised mortality data on autistic people as part of their joint strategic needs assessments.
The National Health Service is taking action to reduce premature death among people with autism and a learning disability, and with autism by increasing annual health checks for people with learning disabilities, including for those who also have autism. The NHS is working to reduce variation and improve care for physical health conditions that disproportionately impact on people with learning disabilities who also may have autism, including epilepsy and cancer. NHS England has commissioned the world’s first Learning Disability Mortality Review Programme to support local areas to review deaths of people with learning disabilities and to use the information to improve service provision. This review programme for people with learning disabilities includes those who also have autism.
Think Autism set out a clear, cross Government programme of action, developed alongside people with autism, their families and carers to improve their lives and reduce premature mortality through better access to healthcare by making adjustments to services. This includes supporting the Royal College of General Practitioners (RCGPs) Autism Initiative to improve understanding of autism amongst GPs.
The transcript of this exchange is available on the Parliament website: Autism: Death:Written question – 34636
Note: Luciana Berger asked two related questions Autism: Mortality Rates:Written question – 34635 and Autism: Suicide:Written question – 34634 .
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