coproduction and parent participation

Autism and ADHD Pathway Experiences

In November 2021 we started work with Jenny Wilkinson, Designated Clinical Offer for SEND in Bolton to better understand the experiences of parents and carers as they negotiate the autism diagnostic pathway in Bolton.
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Listening sessions.

We invited parents and carers who have had experience of the autism or ADHD pathway within the last 4 years. This included parents whose children were eventually diagnosed, those who weren’t diagnosed and those that had had concerns but not been able to be referred. Parents were representative of a wide age group from pre-school through to college, and included those in mainstream and specialist settings

We wanted to understand the experiences of parents and carers at all stages of the journey:

  • When you have concerns
  • During the diagnostic pathway
  • After diagnosis 
  • Any other concerns

Parents worked in small groups to enable all voices to be heard, and towards the end we came together to discuss each groups conversations. 

Parent carer feedback

The wealth of experience that parents were able to share at this session, along with exeperiences shared during our workshops and other sessions enabled us to be able to prepare a report about parent carer experiences. The headlines of which you can read below. 

 What has happened since?

The feedback from parents and carers has gone on to be part of the following local developments:

  • Changes have been made to the information in letters sent to parents during the diagnostic journey. This includes a better explanation of what will happen during the diagnostic pathway.
  • The Local Offer has a new page dedicated to Autism The content of this page was based on parent feedback. Having better information on all aspects of the journey was a key ‘ask’ of parents.  
  • An improved post-diagnostic support offer is being considered to sit alongside the Early Bird offer.

How has parent carer participation made a difference in this project?

The parent carer voice within this project came from a wide range of parents and carers, different ages and different levels of need for their children.

It was the specific examples of the journeys that the parents and carers has been on that enabled the report to be written with such a wealth of detail. It was useful to be able to demonstrate that the change that is needed isn’t massive – there are a number of small changes that will have huge impacts on parents and carers journeys, for instance having improved information on the Local Offer to demystify the BSCIP process.

Without parent carer participation, the assessment of the current pathway, by the professionals that are involved, would not have picked up on the experiences of the parents at all.