Working with Welsh Government’s neurodivergence and learning disabilities team, we ran a 12-week discovery exploring how to support those awaiting a neurodivergence referral or assessment.

There are currently extensive waiting times for individuals awaiting assessments for suspected neurodivergent conditions and gaps have been identified in the level of support and information that they receive while awaiting their assessment.

Based on our map of the existing service, we identified 3 user groups for our research which included:

  • professionals who are part of the neurodivergent referrals and assessment service
  • parents or guardians of neurodivergent young people and children
  • neurodivergent adults

Impact

It's too early to see some of the impact as the discovery has just come to an end, but it helped gather significant evidence that a digital product that gathers information could provide a set of solutions to help those awaiting a neurodivergent referral or assessment get the information and support they need.

Recommendations

Our primary recommendation is to run an alpha (trying different solutions to the problem we identified during the discovery phase) on digital information gathering which would:

  • test the riskiest assumptions of this approach
  • understand the more detailed user needs and define the requirements of a minimum viable product
  • explore different solutions to these requirements, including how to ensure the product is accessible and bilingual
  • explore and understand the challenges around information governance, information sharing permissions and consent
  • identify the best route for implementing the product, for example, whether to build it, buy it, or a hybrid of the two, in which you would work with a supplier to modify the existing product
  • better understand the consequences of embedding this product into the wider service, and how to ensure it contributes to making the overall service more joined-up
  • consider how to support those that will find it harder to access or complete information gathering digitally

Our secondary recommendation is to run an alpha on a centralised resources and support repository.

A centralised resource and support repository requires either the user or a professional supporting them to understand their own needs and signposting them to the information they need. Parents and adults we spoke to perceive provision or signposting to be non-existent – all described resorting to finding their own resources and support and finding this challenging. This indicates a gap in awareness of what is available, as well as a lack of consistent signposting by the professionals that neurodivergent people meet with.

We recommend running an alpha to:

  • test the value of this concept as well as the riskiest assumptions
  • explore sourcing and validating bilingual content in a range of accessible formats
  • explore horizon-scanning for new content and keeping existing content updated
  • explore maintaining national and local support directories
  • explore a model that involves cataloguing and directing users to existing quality online resources, avoiding replication, alongside content created or co-produced by neurodivergent services

We also recommend further research into digital profiling products. Digital profiling products may offer a solution to this and may play a role in reducing demand for assessments. However, we only gathered limited insight into this concept during discovery. We recommend further research is carried out to better inform this concept.

Hear from Sian, Neurodivergence Programme Manager, and Einir, Senior Neurodivergence Manager, at Welsh Government who discuss what’s been achieved so far on this project:

How has working in an Agile way helped this project?

“
I think working in an Agile way has made this project much more efficient than it would otherwise have been. Most people are now used to using virtual platforms, so this has made user research much more timely and avoided the need for anyone to travel, saving on time, expenses and better for the environment. It has enabled regular catch ups, which wouldn’t have been possible in person, often we only needed a 20 min catch up to clarify issues, agree way forward, update on progress, this wouldn’t have been possible if we had needed to do it face to face. Meeting virtually was easier than many emails back and forth on issues and updates.

Agile working made the team more accessible to us, which was invaluable for short ‘between meetings’ catch ups. It also suited many of our client group where ‘face to face’ meetings may have been overwhelming or for timely consultations with professionals who have busy caseloads.

What are you most proud of about what’s been achieved?

“
The outcomes have reinforced what our original thoughts were, so we now have the evidence to enable next steps. We built really good working relationships with the virtual team who were approachable, knowledgeable and flexible in their approach.

What were the benefits of working with CDPS?

“
The benefits of working with CDPS is most definitely the capacity it brings. This project was delivered in 3 months, had we needed to complete it as part of our core work withing the programme it would have taken us years. The benefit is the capacity of CDPS to work intensively and with a focus only on the project to get it done in a timely manner and cohesive manner.

Another benefit is the expertise that CDPS bring to digital issues which is an area outside of our expertise yet key to the success of transforming neurodivergence services.

A further benefit is the objectivity that comes with working with CDPS, a separate organisation to objectively review the area of work, undertake the research, make sense of it without prior knowledge and make objective recommendations based on findings, particularly from a user perspective. The objectivity was also helpful to get the most out of user participants who were able to be open and honest with independent researchers.

A final benefit is that I have learned more about project management, research, and thematic analysis that I will put to good use in other work.

Next steps

Our discovery report and recommendations have been shared with the Welsh Government’s neurodivergence and learning disabilities team. CDPS will meet with the team to discuss how we could provide future support depending on what recommendations they take forward.

How it meets our objectives

CDPS’s objectives:

Objective 1: Supporting the leadership and culture amongst public service leaders to drive good digital policy making and support digital transformation.

Objective 2: Support others to ensure that people can access digital public services by helping them create services that are designed around user needs.

Objective 5: Continuing to promote shared use of the technologies and create and embed common and shared standards in digital, data and technology.

The Five Ways of Working – Well-being of Future Generations Act

  • Long-term
  • Integration
  • Involvement
  • Collaboration
  • Prevention

7 well-being goals – Well-being of Future Generations Act

  • A healthier Wales
  • A more equal Wales
  • A Wales of more cohesive communities
  • A globally responsible Wales