Improvements identified in diagnosis and management of children with Autism in Cumbria

The outcome of an independent report commissioned by Cumbria Partnership NHS Foundation Trust is being used to drive improvements into the diagnosis and management of children with Autism in Cumbria.

The review was commissioned by the Trust in order to identify improvements required and the findings hears the voices of parents, clinicians and all multi agencies who have been involved with the autism service and process. Now the Trust is working with parents in implementing improvements highlighted in the report.

The review, carried out by Dr Karen Horridge, paediatric consultant in disability from Sunderland highlights what is currently working well for CPFT, this includes:

  • Committed staff that are enthusiastic and are keen to improve
  • Excellent working relationships across  multi agencies
  • Senior management support is clear with the willingness to explore all possible drivers for service improvement
  • Positive training opportunities for parents to learn more about autism

A number of recommendations have also been made to restore confidence in families and ensure there is an improved pathway those using the autism service.

Recommendations include:

  • Co-design the autism pathway and process with parents.
  • Develop plans to improve education and awareness of all services that come into contact with children and young people in Cumbria, including providing training to parents in promoting social communication and managing challenging behaviours.
  • Agree an approach and develop plans to build multi-agency competency for all involved in the assessment, management and support of children and young people with autism spectrum conditions.
  • Develop a robust mechanism for care planning and support for families at the point of diagnosis.
  • Identify ways of strengthening partnership working with primary care to support those children and young people with autism spectrum conditions.

Dr Raj Verma, Associate Medical Director/Paediatric Lead is leading a number of sessions with parents, clinicians and partners.  He said:

“Thanks to this review, we know exactly where we need to improve and have some excellent recommendations for improvement that can be translated into various work-streams. 

“Work is already underway to address the recommendations and a stakeholder event has also taken place in Penrith which enabled all individuals with links to autism to come together and present ideas to co-design an enhanced service pathway. This event marked the beginning of robust parent involvement in future developments of the service and the new pathway, which will individualise autism assessment to ensure early intervention and support is the best it can be.”

A further stakeholder event is planned to take place next month in Barrow in Furness.

Janine Wigmore, area policy officer for the North of England at the National Autistic Society said:  “The National Autistic Society has been working locally for several years to raise serious concerns about the poor autism diagnosis and post-diagnosis support service for children in Cumbria. This independent review is therefore very encouraging and demonstrates that Cumbria Partnership NHS Foundation Trust recognises that improving this service is an absolute priority.

“The report describes the current service as ‘grinding to its knees’, with children waiting up to three years for a diagnosis which is far too long and puts families under even more pressure. We agree that many of the changes won’t need extra resources, but the Trust and commissioners must be ready to invest if necessary to see through the recommended improvements to the assessment process, autism training and autism-friendly practice.

“Restoring families’ confidence in the service is, rightly, the report’s primary recommendation. Families have told us how these unacceptable delays have made an already difficult time for them and their children much worse. They’ll need to be confident that there are going to be real changes, so it’s vital that parent groups are involved in developing the new service as the report recommends.

“We look forward to working with local families and the Trust to help realise their ambition to transform the service into one of the best in the country.”

To read the full report click here.