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Understanding Autism - a Canterbury and Coastal CCG pilot project

Canterbury and Coastal CCG is running a pilot study to improve the experience and outcomes of children and young people referred for an assessment for autism. They work with parents and carers and their children and NELFT NHS Foundation TrustSNAAP and HeadStart Kent to make the pilot as effective as possible.

The pilot is taking a ‘whole-system’ approach to improve support offered to all children and young people whether they have been referred for an assessment, are waiting for an assessment or those with a diagnosis.

Initially the pilot researched the issue and heard the voice of parents via a survey sent to parents and carers whose children are currently on a waiting list for an assessment for autism, as well as those parents whose child has been diagnosed with autism over the last 12 months, in the Canterbury and Coastal CCG area.

The survey asked parents to tell us:

  • their concerns and needs,
  • how and what support could be put in place to improve their experience and outcomes, and
  • their views on the support offer currently available and what could be improved.

We used the results of the survey and worked with a group of parents and carers to shape an event for families in October 2019. At the event there were sessions to provide information, and organisations had stalls presenting what support they offer families.

Responses from both professionals and families who attended the first event felt it was a really successful day and it was valued greatly by those who attended.

We printed an information handbook to give to families who attended the event and a  session was run to ask for feedback on how we might improve it. We also held a focus group in January 2020 with families to look at further possible improvements to the handbook.

A high number of families expressed an interest in coming to the first event, and it was oversubscribed so a second event will be held on in February 2020. We used the feedback from the first event and worked with parents to further improve the second event.

Families who attend the second event can attend three sessions to access specialist advice:

  1. NELFT will look at topics such as emotions, relationships, and everyday difficulties for children and young people with autism
  2. Kent County Council will look at Special Educational Needs (SEN), Education Health Care Plans (EHCP) and other support available in school
  3. An organisation called “So, You’re Autistic?” will run a family session which explains to children and young people what being autistic means, learning coping strategies and how they can feel proud to be autistic.

Attendees will also be able to meet other families and share their experiences, and talk to a range of organisations which provide care and support to families in their situation.

A mid-term review has been produced and the pilot will be further evaluated and lessons applied across Kent as part of the implementation plans of the Kent Local Area SEND Written Statement of Action that was produced following an OFSTED/CQC inspection.