Neurodevelopmental Disorders (NDs) are a group of lifelong conditions that affect the way an individual’s brain develops. They include, but are not limited to, Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Intellectual Disability (ID) and Foetal Alcohol Spectrum Disorder (FASD). The effect of a ND varies substantially (depending on the condition and the individual) but may impact upon a wide variety of areas of a person’s life, such as attention, emotions, and memory. It can affect the way that a person interacts with the world around them, and the way that the world around them interacts with them. This can lead to mental health issues being more common for people with ND conditions than they would be for people without these conditions.
The recent publication of the Scottish Government National Neurodevelopmental Specification for Children and Young People: Principles and Standards of Care (2021) (external website) sets out the standards and availability of services that people aged up to 25 years old can expect. A specification for adults above 25 is anticipated soon. Hence, it is even more important that services are able to use the best methodology to estimate the required capacity to meet anticipated demand.
As highlighted in the Specification, assessment and diagnosis can be helpful to individuals and their families to understand their condition and to ensure that they receive appropriate support, albeit that it is noted that support should not be dependent on diagnosis. Public Health Scotland (PHS) has recently worked in close partnership with clinicians based in NHS Boards in Scotland, and autism charities, to build a trajectory tool to support service planning. This will allow services to estimate the staffing (across a range of disciplines and agencies) needed to meet the demand for assessments.
By understanding existing assessment and intervention pathways, and the potential impact on capacity of change to pathways, the tool can help to inform decision making around patient support and staff training. Can the make-up of the pathway be redesigned to share elements of assessments across a wider group of professionals? Will diagnostic services become rapidly overwhelmed using a current assessment pathway? Can funding be spent in a different way to support children and adults earlier in the pathway, resulting in earlier intervention and removing the need for a diagnosis in order to get support? Could there be an increase in spending on support within education, rather than utilising all funding within diagnostic services?
The trajectory tool is designed to be used collaboratively by professionals and analysts at NHS Board level. It should be noted that currently there is not a Scottish national target for those patients on an ND waiting list, but it can be used flexibly to help services to understand when chosen targets will not be met, depending on demand and capacity. The tool is best used in collaboration with organisations and professionals who are involved with the young person or young adult. This can include teaching staff, paediatric and mental health staff, and others who may provide pre- and post-assessment support. To estimate the level of capacity needed to meet the needs of children, young people and adults, and their families and carers, all relevant professionals must be considered.
We want a Scotland where everyone thrives, regardless of their circumstances. It is hoped by using this trajectory tool, professionals will be in a stronger position to provide more robust assessment pathways that ensure that those individuals with ND conditions and their families are offered the best from services, to promote a safe and fulfilling life experience.