Faster diagnosis for those with autism

We spoke to Healthwatch Cheshire East to find out more.

What made you investigate this issue?

We have listened to the experience of over 200 carers. Through the conversations we had from visiting carers groups and events, we found that an overwhelming majority of problems were faced by families with children on the autism spectrum. As a result, we decided to do more research into this.

What did people tell you?

People’s main concerns and frustrations were about lengthy delays in getting an appointment to confirm whether their children had autism.

People told us that they were waiting at least 18 months, with many waiting three years and some waiting over five for an appointment.

Not having a diagnosis impacted on every part of a family’s life - from everyday coping strategies to schooling.

One carer told us:

What happened as a result?

Autism diagnosis waiting times for children was the number one complaint received by our local Clinical Commissioning Group . We got in touch with them to say that we had spoken to a lot of local people about their experiences and that we wanted to talk to them about it.

After meeting our CCG, we worked with them to help plan a better service. We shared people’s experiences and their ideas for a better approach that is based on what people want and need. The new approach is now approved and we are hearing really positive things from families.

To help make sure that families feel less isolated, we’ve also created an informal support group, linking families with similar issues together to help them feel less isolated. This is working well although at an early stage.

What feedback have you had so far?

Families have told us that after waiting years for a diagnosis, they have finally received appointments. People have told us they feel like they finally have hope. Although the support group is new, those who have attended have been really positive.

For us, this project has been a huge learning curve. You can never underestimate the emotional impact of a project like this, or the power the patient voice can have in leading to positive changes being made to services.

The professionals knew that the old system wasn't working and wanted to do something, but I think families found it hard to speak about the really negative elements with them.

They felt able to share what wasn’t working well with us and the results make hard reading – but in turn we were able to use this information to influence change.