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Autism in the NHS Long Term Plan

Members of the Department of Health and Social Care’s Autism Strategy Executive Board and associated task and finish groups, are to welcome the inclusion of autism as a clinical priority in NHS England’s upcoming Long Term Plan.

Over one in 100 people in England are on the autism spectrum. Every autistic person is different and while some may be able to live independently with little support, others need round-the-clock care and support. But every autistic person will, at some point, need to rely on the National Health Service – just like anyone else. Yet emerging evidence from the UK clearly shows that autistic people face unacceptable health inequality in this country, which cannot be allowed to continue. The NHS England Long Term Plan, therefore, is an opportunity to remove the barriers that autistic people face in getting the support they deserve that must be taken and fully resourced.

Research suggests that people have to wait far too long for an autism diagnosis, with children waiting on average over three and a half years for a diagnosis after first seeking help, and adults waiting on average two years. The results of Freedom of Information requests undertaken by Rt Hon Norman Lamb MP earlier this year further highlighted the postcode lottery that exists across the country. This autism diagnosis crisis must be tackled in the Long Term Plan. Members believe it should set out ambitious established specialist autism teams across the country. These would provide diagnostic services and post-diagnostic support, as well as working with other services in the area to meet autistic people’s needs. Crucially, to drive down waits, members also believe the Plan should set out a clear waiting time standard of no more than three months between being referred for an assessment and being seen. This is an action outlined as a priority by the Executive Board.

Beyond diagnosis, access to post-diagnostic and ongoing support is vital. Although autism is not a mental health condition, research shows that 70% of autistic children develop mental health problems. This is also true for many autistic adults. When that happens, it is vital that NHS mental health services are on hand to offer the right support. However, autistic people tell us that professionals don’t understand how to adapt their mental health therapies to work for autistic people. It is vital, therefore, that the Long Term Plan secures access to mental health services, makes sure that adjusted interventions, underpinned by research, are available and that specialist input from autism teams is available when it is needed.

To be successful, members believe that support from specialist autism teams would be vital and current good practice shows the value of these teams upskilling other local services.

This is also the time for the NHS to state its commitment to the principles of the Transforming Care programme, to reduce the reliance on inappropriate mental health hospitals for autistic people, beyond its March 2019 deadline. NHS data shows that the number of autistic people appears to have increased in the last three years. We are concerned that this is because there are not sufficient services in the community to meet autistic people’s needs. Commissioners need further guidance and support on commissioning for autistic people, to avoid the current – unacceptable - situation of many autistic people being deprived of their liberty in hospitals for months or even years.

In order to make sure that autistic people are kept in good physical health, it is important they get the support they need from primary care. Yet, currently, many autistic people struggle to access their GP. Emerging evidence suggests that autistic people may be at risk of dying early. This is unacceptable. A GP register on autism, as recommended by NICE last summer and used with success for people with a learning disability, will allow our health service to make sure it is meeting the needs of autistic people, just like it would anyone else. This important step has just been committed to by the Welsh Government. England’s NHS should follow its example.

Finally, all of this must be underpinned by understanding and training; in which specialist autism teams would play a key role. Despite clear duties in the Autism Act statutory guidance, it is clear that not all health and care staff have the autism training they need. Following the welcome commitment last month for mandatory training on learning disability, this clinical priority in the Long Term Plan creates the opportunity to roll out a comprehensive training package for health and care professionals across both autism and learning disability.

Members say “We believe strongly that the health needs and interests of autistic people have been overlooked for too long. The Long Term Plan is our chance to put this right, but it cannot happen without ambitious goals to establish and fund the services that autistic people in England need”.

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