Working towards an integrated autism and ADHD assessment pathway

The waiting list initiative

We recognised that, whilst support should be based on need rather than diagnosis, the diagnosis and identification of a neurodevelopmental condition can lead to the most appropriate and tailored support, as well as a greater understanding and acceptance of self for the young person.

There are also additional benefits that efficient and high-quality assessment can bring, including better health, education, and social outcomes for young people. Diagnosis is complex, and there is a need for the process to be improved for children and families as well as clinicians.

Transforming Autism Assessments

In 2021, we secured six months of funding from South West NHS England and Improvement’s autism team/Learning Disability and Autism Programme transformation fund, which was later extended. A waiting list initiative (WLI) steering group was established and a new dedicated multi-agency team was created to pilot and evaluate the project.

The aim was to trial an innovative partnership model, with a multi-agency team acting as a satellite resource to target multiple children and young people’s autism diagnostic waiting lists across services within Bath and North East Somerset (B&NES), Swindon and Wiltshire (BSW).

Additional assessment capacity was created for children and young people within BSW, including those awaiting a neurodevelopmental assessment with the BSW Child and Adolescent Mental Health Services (CAMHS). Research was carried out, including stakeholder engagement with young people, parent and carers, local parent and carer forums/councils, commissioners, and colleagues in education, health, and social care.

During 2022/2023, the initiative focused on several key areas. These included evaluating the population’s needs, with a specific focus on analysing the complexities of cases awaiting autism assessments. We collaborated with local parent carer forums and councils, gathering feedback and experiences related to past and present assessments using evaluation forms and face-to-face events.

The initiative also aimed to actively engage young people in influencing the future of the BSW assessment pathway. We spoke to young people during group and individual sessions to listen and consider their views.

The project also involved scoping pre-assessment support by trialling online information sessions, which were designed to provide parents and carers with advice, strategies, and essential signposting.

Furthermore, the initiative sought to consult with colleagues across BSW to determine the potential structure and features of an integrated autism and Attention Deficit Hyperactivity Disorder (ADHD) assessment pathway. This collaborative effort aimed to shape a pathway that effectively addressed the unique challenges posed by these conditions.

Impact

As a result of the project the following has been achieved:

• Between April 2022 to March 2023, the Waiting List Initiative Team invited 410 children and young people to partake in assessments. Between April 2023 and January 2024, 503 children and young people were invited to be assessed.
• A total of 128 parent/carers responded to the evaluation survey, contributing valuable feedback on their respective experiences.
• Research into the assessment requirements and complexity of cases involved evaluation of data from 335 children and young people. The findings indicated that the majority of children and young people require a ‘standard’ assessment (65%), where as 28% were considered complex, therefore requiring additional assessment resources.  A further 7% were evaluated as having an enhanced level of information, thereby requiring less assessment resources.
• Throughout 2023, the Waiting List Initiative collaborated with the Wiltshire Parent Carers Council and B&NES Parent Carer Forum to host five listening events to engage with parents/carers about their experiences, and their ideas for how to enhance and develop future services. Events also took place with Swindon SEND Families Voice.
• In partnership with Swindon STEP, young people were consulted to capture their views and experiences about autism assessment.
• Six pre-assessment online information sessions for parents/carers were piloted. These have been continued to provide information and essential signposting as children and young people progress through the assessment pathway.
• Colleagues across B&NES, Swindon, and Wiltshire engaged in discussions and events, to plan new and innovative approaches to conducting autism assessments and ADHD assessments for children and young people.

The project has supported children, young people and their families in the community. This is evident by the positive patient feedback that has been received.

“It helped me know why I am like I am” – young person

“It was lovely that [child] was listened to as much as they were and that it was really important to [child] that she had her say” – parent

“It’s been really useful and helpful to have all my questions answered and the support recommendations were just right” – parent