Identifying how to support people waiting for neurodivergence referrals and assessments

We are currently running a 12-week discovery in collaboration with the Welsh Government’s neurodivergence and learning disabilities team. 

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 are received while they await their assessment. 

CDPS aims to work collaboratively with the Welsh Government’s neurodivergence and learning disabilities team to identify how we might provide people waiting for a neurodivergence referral or assessment, and their support network, faster and easier access to resources and support, and how we can make providing and gathering information to support a neurodivergence referral and assessment more effective and efficient. 

We are also gathering evidence about the value of pursuing digital solutions to address and support these problems as through desktop research we have learned that other countries in the UK such as England are using digital solutions in this area. As part of our research, we have conducted desktop research to explore the pros and cons of this solution. 

We are working with our stakeholders Sian (Neurodivergence Programme Manager) and Einir (Senior Neurodivergence Manager) from the Welsh Government’s neurodivergence and learning disabilities team. 

As a team we conducted desktop research based on recommended materials from the Welsh Government’s neurodivergence and learning disabilities team to create an overview of the existing neurodivergence assessment and referrals service for our benefit and understanding. 

This also served as a useful tool to utilise during our user research interviews as we were able to check with participants whether our understanding was an accurate reflection of the existing service and use it to guide us through our participants experiences throughout each stage of the process.

The team referred us to the Welsh Government’s neurodivergence network which consists of neurodivergent Welsh Government employees. We shared our discussion guides with them along with all other content for the project that we would be sharing externally to ensure that our language used was user friendly and that we were using correct language in our reference to neurodivergence. We worked through a handful of iterations on the discussion guides as the subject matter was of such a sensitive nature that we wanted to ensure that we were providing due diligence to our approach when interviewing participants who would be detailing their lived experiences of their referral and assessment journeys. 

Based on our map of the existing service we identified 3 key 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 

We decided to interview 10 participants from each of the 3 user groups, totalling our number of research participants to 30 which we believed would provide ample data for each user group and would be a manageable amount of data to analyse based on our project timeline. 

Although we had decided on our user groups, we acknowledged that we needed to be more specific on our criteria for interview participation with each group. 

During user research, it’s important to ensure that data being collected on a subject matter is as up to date as possible. We decided that we wished to speak to individuals who had received neurodivergent assessments and diagnosis within the last year. Where individuals had received assessments and diagnosis that were exceeding one year, we decided should we wish to speak with them, we would ensure that the assessment and diagnosis was no more than three years ago. 

We also wanted to ensure that we were hearing from participants across Wales, and as part of our screener, we requested that prospective participants disclose the regions in which they had received their assessments and diagnosis and proceeded to interview participants from each region in Wales within each user group. 

Building services bilingually is one of our Digital Service Standards for Wales and as part of this research, we wanted to provide Welsh language service users with the opportunity to feedback on their experiences of their referrals and assessment where they had conducted and received these through the medium of Welsh. We were successful in recruiting Welsh language users of the service and were able to facilitate Welsh interviews for these individuals. 

As an organisation, we also strive to ensure that any research we conduct, provides an opportunity for seldom heard voices to be heard. As part of our recruitment, we tried to reach seldom heard groups and were able to reach a wide demographic with our recruitment. However, this project was constrained to a tight timescale, and we have recommended to the team that further time should be allowed and taken to recruit and speak with these groups further to ensure that their experiences are considered and captured. 

We chose to conduct virtual interviews due to the user group types as we felt that the ability to take part in interviews with us virtually would add flexibility to participants ability to meet with us, especially working professionals and parents. 

We are currently in the process of reviewing and analysing the data collected from our interviews and will use this to construct a detailed report of findings and recommendations for the Welsh Government’s neurodivergence and learning disabilities team. 

We will also organise a show and tell upon completion of our report where we aim to revisit our work as a project team and explain our approach to our work, in addition to presenting our findings.