We all have Mental Health – a puzzle of genes, upbringing and life experiences; and each person is wired differently. For those charged with the unravelling of our idiosyncrasies, it must be a challenge to analyse something that’s hard to see or understand. When someone has high blood pressure there’s a machine to measure it. A little torch can reveal a throat infection or a blocked ear. A thermometer shows just how high a temperature can jump. And a broken bone will be revealed by an x-ray. But diagnosis of a troubled mind is a different matter. Especially when it’s so hard to even get an appointment!
Research by Autistica shows that seven out of ten people with autism have mental health problems. Yet, for them, gaining access to mental health services is a serious barrier. There seems a reluctance to accept anyone with a dual diagnosis. And they are often left to make sense of their issues without the necessary support.
Our experience
This is backed up by the experience of many Talkback members. Because, unfortunately their continued attempts to access mental health services have been to no avail. With this in mind, Simon Steed from Talkback approached the Central North-West London (CNWL) NHS Trust, who oversee Mental Health Services in Milton Keynes. The purpose was not to apportion blame, or dwell on what was wrong with the system. Rather to explore a new way forward for the benefit of people with dual diagnoses of autism and mental health.
A productive virtual meeting with the Director of Mental Health Services in MK followed. Stephanie was extremely interested to hear directly of people’s lived experiences. As a result, CNWL and Talkback began to work together.
Setting up an engagement forum
An engagement forum was convened, where the CNWL team had the chance to learn from autistic people’s personal experiences. After listening to Talkback members and their parents, the focus was on possible solutions and recommendations. So we can pave the way for smooth access to services in the future. CNWL also invited our members to consult with them on planned sensory pods and a sensory garden, commissioned for the secure MK mental health unit.
The new year brought some quick positive news. Because the CNWL are now planning two conferences dedicated to Autism this year. They want to continue to listen and learn from the experiences of autistic people and their parents. As well as discuss Autism training opportunities within CNWL teams.
Access to mental health services isn’t a problem exclusive to Milton Keynes but, by working together, there is now a more positive outlook there. Thanks to the Talkback members, who spent many hours with us on their personal stories for the forum. And thanks to CNWL for embracing the members. And, crucially, committing to fix the dual diagnosis accessibility issue.
The first steps to winning the duel for diagnosis.
Simon Steed and Tony Flower
