The below Parliamentary question was asked by Mrs Anne-Marie Trevelyan on 2015-11-09.
To ask the Secretary of State for Health, what steps his Department is taking to ensure that the experiences of (a) children on the autism spectrum, (b) adults on the autism spectrum and (c) family members and carers, during the diagnostic process, are collected and published.
Alistair Burt
The Department issued new statutory guidance in March this year for local authorities and National Health Service organisations to support the continued implementation of the 2010 Autism Strategy, as refreshed by its 2014 Think Autism update. This sets out what people seeking an autism diagnosis can expect from Local Authorities and NHS bodies.
The Department has also discussed with NHS England the difficulties that people on the autistic spectrum can have in getting an appropriate diagnosis in a timely manner. With support from the Department, NHS England and the Association of Directors of Social Services will undertake a series of visits to clinical commissioning groups to discuss good practice in meeting the National Institute for Health and Care Excellence (NICE) Quality Standard 51 Autism, and those that do not, with the aim of supporting more consistent provision. These NICE guidelines already recommend that there should be a maximum of three months between a referral and a first appointment for a diagnostic assessment for autism. We expect the NHS to be working towards meeting the recommendations.
We are aware that Northumberland continues to make significant progress in improving access to services. A child will wait no longer between initial referral and treatment than 12 weeks and the majority are seen within nine weeks. Northumberland has also invested in adult autism diagnosis services and has an agreed programme with Northumberland, Tyne and Wear NHS Foundation Trust designed to deliver the NICE guidelines for adults by September 2016. Urgent cases are seen earlier and those on waiting lists, whose needs escalate, are given access to services as required. There is also a newly developed emotional health and wellbeing strategy for children and young people in Northumberland which will aim seek to identify children with autism at an earlier age and ultimately provide earlier treatment.
NHS England is promoting the engagement services with children and young people. All children, young people and adults, including those with autism or a learning disability, who are receiving care from the NHS, should have the opportunity to provide feedback via the Friends and Family Test. There should also be consideration given to capturing the views of parents and carers. In addition, the autism statutory guidance mentioned above states that NHS bodies and NHS foundation trusts should look at people’s experiences of the autism diagnostic process locally and assure themselves that this is acceptable.
