In our report, Children and young people with autism, we heard from over 1,000 people about their experiences of using autism services and the improvements they’d like to see.
Although most people are happy with the care they receive from their GP, we heard that for many a visit to the doctor can be stressful for both people with autism and their families.
In West Sussex, Healthwatch spoke to over 100 members of Autism Support Crawley to understand what changes could be made to help improve services for children with autism. Based on their findings Healthwatch West Sussex created six ways staff in GP surgeries can improve patient experience.
Six ways GPs can improve the experiences of people with autism and their families
1. Improving the waiting room experience
Many families said that waiting rooms at GP surgeries can be stressful. As autism is not a physical disability, they said that people with autism often receive disapproving looks or negative comments from others who may not understand their behaviour. Making the waiting experience autism-friendly can help alleviate this stress. One way of doing this is to consider having appointments for people with autism at the beginning or end of the day when the waiting room is less crowded and the waiting time is minimised.
2. Providing resources to help patients with autism prepare to see a doctor
85% of respondents thought that having visual resources, booklets or videos could help to prepare people with autism for an appointment and would reduce the anxiety of a trip to the doctor. The Royal College of General Practitioners has produced an example leaflet.
3. Better notes on files to help identify when patients are autistic
99% of people felt that having better notes on a patient’s file would remind staff at GP surgeries when someone has autism. This would make appointments more productive, as parents wouldn’t need to keep explaining themselves.
4. Improving knowledge of the referral process for diagnosis
People thought that some GPs need to develop their understanding of the referral process for autism diagnosis. Parents also wanted GP practices to improve their communication with other services and how to access support such as Child and Adolescent Mental Health Services (CAMHS) or respite care.
5. Better support for parents, including regular check-ups and flu jabs
Many parents who care for children with autism don’t have enough time to look after themselves. Nearly seven out of ten people felt that their GPs did nothing to support their needs as carers. A regular programme to support parents, including check-ups and flu jabs and making sure they are on your carers register could help.
6. Regular training for staff
Some staff at GP practices find it difficult to spot the signs of autism consistently. Regular awareness training would not only help people to be referred for diagnosis, but also ensure that staff can understand and support families of people with autism.