These are some of the key findings of our work gathering the views of people with autism and their carers about health, care and support services in Wiltshire.
In a joint project with Wiltshire Service Users' Network (WSUN), which runs the Wiltshire Autism Hub, we listened to the experiences of more than 100 people to understand what it’s like to go for an appointment with a doctor or nurse, and what they think of other support that’s available.
The majority of the people we spoke to felt that there’s a lack of understanding about autism spectrum conditions, and of what can be done to alleviate the difficulties people experience.
Another key theme was the lack of services and groups for people with autism spectrum conditions, with most relying on support from family members.
What people told us
- We heard that an appointment with a doctor or nurse can cause considerable anxiety and stress for someone with an autism spectrum condition.
- People with autism had difficulties explaining things to health professionals and understanding what they were told about their treatment.
- Hospital environments are particularly difficult for those with an autism spectrum condition.
- Experiences of phone and video appointments were mixed, but the responses we received suggested these had benefits for some people.
- Most of those with autism spectrum conditions and their carers did not feel they got enough support related to their condition.
- Other support services were valued but we were told there was not enough of them, or enough information about them, with most relying on support from family members.
Stacey Sims, Healthwatch Wiltshire manager, said: “We have gained a really valuable insight into the experiences of people with autism spectrum conditions and their carers and we’re really grateful to them for sharing their views with us.
“Those we spoke to have identified a range of ways to improve their experience of health and care services, and we’ll be monitoring how these services are developed in the future so they can better support people with autism.”
Louise Rendle, CEO of Wiltshire Service Users' Network, said: “Through our Wiltshire Autism Hub work, we are aware how crucial it is for providers to have a better understanding of the needs of autistic people and their relatives and carers.
"We are hopeful that the findings from the survey will provide valuable information to enable health, care and support agencies to implement real change, to ensure that people are well supported in the future. Thank you to everyone who took the time to share their experiences."
Clare O’Farrell, Director of Locality Commissioning for Wiltshire at Bath and North East Somerset, Swindon and Wiltshire Clinical Commissioning Group (BSW CCG), said: “The report is very timely as we are coming together with system partners as part of the Learning Disabilities and Autism Transformation Programme, and this report will ensure the views and feedback from people, and carers of people that have a diagnosis of autism, are at the forefront of future projects."
Find out more
Read our report to learn more about what people told us, their ideas to improve services, and the recommendations we've made.