Autism services report

With an awareness of the national context of ASD and issues reported by local families to Healthwatch Norfolk we looked to explore this further. Healthwatch Norfolk wanted to explore families’ perspectives and experiences of trying to access help and support for a child with ASD/suspected ASD (0-18 years old), from local health and social care services. Many individuals and families are affected by ASD and come into contact with a wide range of services. Healthwatch Norfolk wanted to understand whether families were getting the right help and support. A mixed-methods approach was adopted, involving quantitative and qualitative data capture through the use of patient questionnaires, attendance at parent support groups and local ASD public events. Healthwatch Norfolk wanted to reach out to parents across Norfolk and of the 170 families that 6 6 showed an interest. A total of 112 families completed a questionnaire representing 133 children across Norfolk.

There were mixed views on accessing health and social care services demonstrating the contrast of experiences across Norfolk. Unfortunately many families had received what they regarded as poor services, and often felt that little had gone well. Despite this, some felt that once you got into ‘the system’ the service they received was good but there were never enough appointments to allow for timely access to services.

The undertaking of this project and further analysis of patient feedback has clearly demonstrated five key findings:

1) his was closely linked to the frustration commonly held amongst parents about the long waits they experienced to access health and social care services including an ASD diagnosis. Many understood services are stretched but recalled the reality of what this meant for their child. This highlighted the need for services to change and improve locally, emphasising the need to listen and engage more with families and service users using the service.

2) Families felt that professionals did not understand what it was like to live with ASD and the effect this has on individual’s everyday lives. Physically getting to an appointment could also prove a challenge, especially if it fell outside of the child’s usual routine. It was felt that there was lack of understanding of ASD across all health and social care services, to facilitate attendance and effective communication at appointments.

3) Parents stated the need for reasonable adjustments to be made in health and social care services, with particular regard to waiting rooms in clinical settings. Waiting rooms in services were commonly referred to as noisy and unsuitable for children with ASD (who commonly experience sensory overload), especially when they found waiting quite difficult. Small changes to the environments could make a big difference to autistic children and parents felt this needed to be closely considered to improve services.

4) Frequently parents recalled not being aware of the process involved for an NHS ASD diagnosis, due to a lack of information and communication. The pathway process was not explained to them. They stated this needed to be addressed to understand what to expect from the service and to enable them to explain the process to their anxious child. A lack of communication also led to parents often feeling forgotten due to the considerably long waiting times they experienced and not knowing where they were in the process.

5) Many parents identified the lack of support available to the families across Norfolk, especially once the child has received a diagnosis. Many described the continuous fight they had to undertake to get the right support for their child. Some expressed the need for more support to wrap around the wider family unit, including the child’s siblings. They believed the siblings received no support and needed help to understand and ensure that all of their children felt supported and comfortable.