NHS: Discovery to improve autism diagnosis pathway

As a parent or carer of a child with suspected Autism, you’re told that early identification and intervention is critical for your child to live their best life and to avoid the risk of mental health crises later on. And yet getting an Autism diagnosis can currently take up to two years. 

We know that this wait can be difficult for parents, unsure of what they are waiting for and dealing with a challenging and sometimes escalating situation. Feedback from parents is that meetings with healthcare and educational professionals could be more productive and less repetitive. As well as a focus on diagnosis, more attention could be given to what the child or young person needs right now.

Together with our technology partner MadeTech we were invited by NHS Healthier Together and One Gloucestershire, to consider how digital might help improve the experience of the diagnosis pathway. They already knew that digital tools would have a huge, transformative impact on the experience of parents, carers and health and educational professionals but the challenge was where to start.

What we did

Through a combination of research, design and co-creation, we uncovered what would have the most impact for the people involved.

Stakeholder engagement and a review of existing insight made sure we were building on what the organisations already knew. Then we got straight into considering potential design ideas, including 14 different sketched concepts and four prototypes:
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We always try to shorten the feedback loop - sketching out rough things, and then running 1-2-1 research sessions to show them to the intended user of those things. We then work out what is working or not working for them - and use the feedback to make the next version better.

This design-led approach was new to the NHS people we were working with, and they found it instrumental in speeding up normal decision making processes.

What we learnt

Our work revealed a set of user needs that fell into six modes of interaction: 
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Four were explored in detail: 

Supporting the Orientation Mode means providing a map: a visual tool for Parents and Professionals alike. Providing a high level lay of the land, and the ability to plot a clear course through the assessment pathway.

The Support and Learning Mode requires a different set of interactions. The tool needed in this area is perhaps best thought of as a guide or a reference tool. Something you can use it to look up things that will help you or recommend to others.

The Record and Update Mode needs to culminate in a collaboratively produced picture; a holistic shared understanding of an Autistic person. What’s happening for them at home, in school, out and about. It should include everyone’s perspective, with a bias towards respecting the people who know the person best.

The Monitoring and Communication Mode includes progress tracking interactions, and the ability to spot problems that need attention and investigation. 

We explored how a dashboard might look if it were sent via email. We felt this would give us an opportunity to explore the elements before committing to a fully blown logged in system.

Results

Our work helped created a vision for significant improvements to the pathway. We left the team with:

• An evidenced set of user needs for the autism assessment pathway
• Some initial prototypes based on those user needs
  
• Recommendations on the first steps to take (taking action now, without waiting for too many technical enablers)
• A good grasp of how to use Design Thinking / Service Design methodologies for future initiatives
  

Feedback

“It has been a brilliant experience, I have learned so much and feel like we have made a giant leap forward in our autism work”
- Geraldine Bates, Head of Children’s Services, Therapies, Autism and SEND (BNSSG)

“Our ICS is delighted with the outcome of this project and the four digital products, once developed, will make a significant and sustainable contribution in supporting our young people with social communication challenges and their families and in our efforts to move the focus from diagnosis to a “needs led” approach”- Mark Hemmings, Head of Children’s Transformation (SEND), NHS Bristol, North Somerset & South Gloucestershire CCG‍

“The highlights for me were seeing the insights from parents and carers and the prototype based on all the valuable insights.”- Timothy Clarke, Head of Digital Transformation, NHS Gloucestershire CCG