A new report, published by patient organisation Healthwatch Kent, details the challenges families face when trying to get support for a child with autism.

Healthwatch captured feedback from 127 people about their experiences which they have used to inform a number of recommendations about how peoples’ experiences could be improved. You can find the report here.

Key findings include:

  • more than 50 per cent of young people didn’t feel they got enough information when they were diagnosed
  • parents said they wanted training on how they could support their child much earlier. Currently they have to wait until they have an autism diagnosis which can take many months
  • eighty per cent of parents told Healthwatch Kent they hadn’t received any support
  • parents said the route to getting a diagnosis of autism for their child was ‘confusing’ and ‘unclear’
  • parents talked about the lack of support in schools especially for children who had high functioning autism
  • families shared stories about the complicated and confusing referral system saying they ‘felt lost in the system’

Healthwatch Kent has made a series of formal recommendations which they have shared with key decision makers across both health and social care in Kent. The findings have already been used to inform Kent’s response and action plan to Ofsted’s recent report on Kent’s Special Educational Needs and Disability (SEND) services. The Ofsted report also highlighted the lack of parent and carer involvement.

Healthwatch Kent’s Steve Inett said, “We regularly hear about the challenges that young people and their families face when trying to use Kent’s autism services.  This report gives us the evidence we needed to set out some clear recommendations which we have already taken to decision makers.  We’ll be working with the relevant commissioners and providers of autism services across Kent to ensure this picture changes and it becomes easier and clearer for people to get treatment and support for autism in a timely way.”

Rachel Jones, Senior Responsible Officer for children’s services for Kent and Medway Sustainability and Transformation Partnership, said: “We are grateful to Healthwatch Kent for the work they have done to highlight concerns of parents, carers, children and young people and the report on services for children and young people is sad reading. Despite changes and some improvements in these services, we are aware we still do not have it right.

“Throughout the summer we have been talking at length with families using these services to better understand where we can improve. This will be a priority area for us as councils and NHS organisations across Kent and Medway work closer together to address health and social care needs and develop a plan for improving services for children and young people.

“We are now working directly with children, young people and their parents to re-design the whole pathway for autism and other similar conditions.”

Healthwatch’s Steve Inett continued, “If you are reading this report today and thinking this resonates with me, maybe you’d like to get involved and help us to improve the service? We are urgently looking for volunteers to work with us specifically on improving autism services. We don’t want these words to stay on the page, we want to make change a reality. So if you can spare some time, get in touch with us.”

 If you are interested in getting involved, check out the website for more information www.healthwatchkent.co.uk