NAIT Adult Neurodevelopmental Pathways report

Conclusions

The ultimate aspiration of this work is that there will be timely access to support, assessment and diagnosis for adults with neurodevelopmental conditions through local stepped care pathways, led by a multi-disciplinary and cross sector workforce with relevant knowledge, skills and resources and including strong partnerships with neurodivergent people.

This has the potential to lead to better participation, experiences and outcomes for neurodivergent adults with earlier and more local support and less escalation of distress, thereby reducing the need for more expensive or longer term support.

Four pathfinder site areas received funding in 2022, to support focussed local work to take initial actions towards the development of a local Stepped Care Neurodevelopmental Pathway. We are not there yet but we are heading in the right direction. There is no route map or existing plan to emulate and roll out, so collectively we are learning as we go with the benefit of implementation science principles. There will be mistakes and actions we look back and learn from, as well as successes and unintended consequences.

The highly committed teams within pathfinder sites and across Scotland are taking very practical steps to understand local priorities and make the changes needed. They are looking for ways to best use the resource and time of the most skilled and experienced team members to support capacity building. There is an undoubted need for workforce planning which includes opportunities for a more diverse and neurodevelopmentally informed workforce across health, education and social care at informed, skilled, enhanced and specialist levels.

Where services are being developed, currently demand is growing rapidly and there is a need to gather data to understand demand and to take explicit steps to manage expectations of referrers, people seeking assessment or support and employees. Although resources are in high demand, there will be a need to consider ways that existing resources can be used differently or ways teams can work differently, along with the need for new resources to meet a previously unmet need.

Diagnostic rates are high which suggests that there is often little doubt about the diagnosis, it just needs a local team member to make the decision and share it. Although in some areas waiting times are very long, there are examples where assessments happen well within the time standards set. Most waits are for assessment to start and once assessment starts, most are completed within time standards set for children's services.

Work is required to agree a consensus on time standards for adult neurodevelopmental assessment, at different tiers of the service and for more straightforward or more complex differential diagnosis, as part of a neurodevelopmental service specification.

The NAIT Adult Neurodevelopmental Network is forming a community of practice to bring together research and practice guidance in a way that local teams can support implementation and the hard but rewarding work of making changes happen.

National and local leadership is required to build on the work of 2022 in the years ahead.