Bristol student Oliver McGowan was eighteen years old when he died following a reaction to antipsychotic medication. Oliver was a sporty, popular young man who was also mildly autistic, with epilepsy and learning difficulties.
Since Oliver’s death, his mother Paula McGowan has been campaigning for all NHS staff to get training in learning disability and autism, to make sure staff know how to make reasonable adjustments to better support autistic people and people with a learning disability. Her petition to the Government was debated in Parliament, bringing this vitally important issue to the face of many of my colleagues in the House of Commons. And now the Government is going to act.
There is abundant evidence of the barriers autistic people and those with learning disabilities face in accessing care. They are vulnerable to mobility issues and sensory impairment and more likely to suffer dental problems, obesity and diabetes. Despite this, Mencap’s Treat Me Well campaign found that one in four doctors and nurses has never had any specific training, even though they are likely to regularly come across people with learning disabilities in their daily work.
The second report from the Government’s Learning Disabilities Mortality Review (LeDeR) programme recommended introducing mandatory training for all relevant staff, highlighting the gap in life expectancy between those with a learning disability and the rest of the population. Currently women with a learning disability on average live a shocking 18 years less than those without, with a 14-year gap for men.
This fact – and stories like Oliver’s – have really stuck with me. I have met his mother Paula to discuss her petition on mandatory training and was delighted to be able to announce our intention to consult on this last autumn.
Our public consultation has now been published and it’s vital we get this right. Many people with learning disabilities are also on the autism spectrum and so our consultation considers how to ensure our hardworking health and social care staff have the right training to understand the needs of people with a learning disability, autism, or both. Not only will patients hugely benefit but staff will be infinitely more informed.
While staff should in principle possess the core skills needed to care for autistic people or those with learning disabilities, it’s clear we can do better.
We are looking at introducing a training framework which would cover all relevant health and social care staff, from hospital porters and receptionists, to those who directly provide care or support. The training would provide an understanding of learning disability and autism and the differences between the two, and cover the skills needed to provide effective care and support. It would also provide a grounding in people’s rights under the law.
The consultation will close on April 12th and the response has been fantastic, with over 700 responses in the first week alone. We have invited a wide range of views, in particular the views of health and care workers, autistic people, those with learning disabilities, and their families and carers are essential. In the final weeks I urge you to have your say here: https://www.gov.uk/government/consultations/learning-disability-and-autism-training-for-health-and-care-staff
We’re proposing that this training would become a legal requirement for health and social care providers and could save lives. Alongside this, learning disability and autism is now one of the four clinical priorities in the new NHS Long Term Plan, supported by plans to tackle health inequalities and ensure all people with a learning disability, autism, or both can live happier, healthier, longer lives.
I hope this work will help bring about a step change in how we care and support some of our society’s more vulnerable members.