Transforming the Autism pathway in partnership with parents

In 2018 NHS Hartlepool & Stockton-on-Tees Clinical Commissioning Group (CCG) consulted with parents about their experience of the Autism pathway, to understand more around the gaps in support.

The Stockton Parent Carer Forum and 1 Hart, I Mind, 1 Future Parent Carer Forum in Hartlepool provided invaluable advice as to the wording of the survey and supported us in the distribution. Across Hartlepool & Stockton we received 140 responses. To enhance the responses we received, we attended Parent Carer Forum meetings to hear people’s views and to enable a 2 way conversation to take place as to how things needed to be improved.

They key messages which came out of the consultation were:

  • Unclear processes
  • Poor communication between organisations and with parent/carers
  • Lack of support for behaviour, anxiety, sensory, practical, siblings, social & emotional welfare
  • There was also significant differences in the support children received in school depending on where they attended

To begin to meet these needs, we are working with Daisychain to pilot a Family Support service. To access this service, children will not need to have a diagnosis –they will have to have a need which could be linked to a Neurodevelopmental problem such as ASD or ADHD.

We worked with the Parent Carer Forums leads to develop a service specification which was flexible enough to begin to meet the needs identified. The service will have a weekly drop in facility in both Hartlepool & Stockton and will also offer:

  • Support on a one to one basis with families
  • Workshops/training which parents will be able to access. For example; behaviour, practical tips/skills etc.
  • Support for children, young people and their siblings

The Parent Carer Forums have agreed to review the service with us to ensure it meets the needs of parents and children in Hartlepool & Stockton.

In addition to this new service, working groups have been established to look at developing a needs led pathway of support which will lead to a more co-ordinated response from health, local authority, education and voluntary and community groups.  This group is looking at how existing services can be improved or reshaped to meet the presenting needs of children and their families. There is a parent carer representative on these groups and we are currently developing a plan as to how a wider parent carer voice can be captured.

The CCG and Local Authority has agreed to attend parent carer forums to ensure we keep families up to date as things progress and to listen to feedback with regard to  what is and isn’t working.