NAIT Adult Neurodevelopmental Pathways report

Adult Neurodevelopmental Pathways – Pathfinder Sites

Introduction

This paper reports outcomes of Scottish Government Mental Health Recovery and Renewal Fund allocated to four health board areas in 2022, which has focussed on understanding the key requirements and practical steps involved in developing and implementing adult neurodevelopmental pathways. The pathfinder sites have been supported by the National Autism Implementation Team (NAIT) and a range of partners in setting aims and a 12 month action plan.

The ultimate aim of the work is to inform the delivery of sustainable, local provision across Scotland, which meets the needs of autistic adults, those with ADHD and those with other neurodevelopmental conditions. New approaches developed are intended to work towards delivering timely access to diagnostic assessment and proportionate and neuro-affirming support before, during and after diagnosis. Recommendations for next steps are based on learning from this work in real world settings.

Background

There is an identified need to improve experiences of adults with neurodevelopmental conditions in Scotland, which affect 10-15% of the population. Although mental health conditions are not inevitable, up to 70% of people with neurodevelopmental conditions seek mental health support and this group makes up a significant proportion of adults involved with mental health and criminal justice services.

Scottish Government are leading a programme of related Leadership and Engagement work with autistic people and people with intellectual disability. Work is underway to develop 'Post-diagnostic Support' for this group and to look at provision which take account of the likelihood of co-occurring conditions.

Public Health Scotland analysis on ADHD prescribing for adults in 2019, highlighted that alongside a steady and large rise in prescribing, there continues to be significant under-diagnosis of adults with ADHD, with significant variation between Health Boards and a range of 0 to 14% of the adults we would expect to have ADHD in Scotland being prescribed medication. (Publication available on request).

In particular young people and adults with untreated ADHD are more likely to develop substance misuse disorders which is particularly pertinent in Scotland where addressing drug related deaths is a national priority area.

Scoping

Scottish Government asked the National Autism Implementation Team (NAIT) to undertake scoping work in 2020-21, to better understand needs and make recommendations. This work included:

1. A Feasibility Study^[1] to inform future adult ADHD pathways and to scope views around development of adult neurodevelopmental pathways. This study was carried out Nov-Jan 2021.

2. A report on the current provision of neurodevelopmental, autism and ADHD pathways (May 2021 - see Appendix).

3. A rapid systematic review and evidence summary of Mental Health in Autistic Adults^[2] which included prevalence of co-occurring neurodevelopmental and mental health conditions.

4. Engagement with a) a neurodivergent partner network and b) a network of professionals leading on neurodevelopmental, autism and ADHD work in Health and Social Care Partnerships across Scotland.

NAIT have led related work on Practice Guidance for the Implementation of Neurodevelopmental Pathways in Children's Services.^[3] (Rutherford et al., 2021).^[4] Although there are clear differences in the context for support and service delivery, there are also principles for practice which are relevant across the lifespan.

In 2022, NAIT have concurrently conducted a wait times review to support understanding of demand and provision for diagnostic assessment of neurodevelopmental conditions in children and adults.

Key findings

NAIT and pathfinder teams have asked neurodivergent people about their experiences and the value of knowing and having your diagnosis confirmed is a strong message. The ever increasing demand for diagnostic assessment speaks for itself and the overwhelming evidence highlights that diagnosis really makes a difference, when the process supports individuals to understand what it means for them. Living as a neurodivergent adult without a diagnosis often has a negative impact on mental health and wellbeing and participation in daily life. Adults we have spoken to describe diagnosis as 'like opening a door'. Most people describe always being aware of feeling different or wrong but not knowing why.

Although everyone has a different experience and response to diagnosis, some key benefits are:

• Understanding 'I am different not broken'
• 'Finding my people' and realising other people have similar experiences and preferences
• Understanding why mental health treatments and therapies had not worked
• Accessing neurodevelopmentally informed treatments, therapies, adjustments and peer supports that do work
• Having words to describe sensory responses and preferences, communication differences and thinking styles
• Understanding masking, autistic burnout and meltdowns and why terms like 'anxiety' and 'depression' or other mental health diagnoses have not fully explained individual experiences
• Accessing more appropriate support, knowing what reasonable adjustments to ask for and learning how to do this
• Changing how others see you – it's not that you are being difficult, it's that you need things to happen differently to be able to take part in naturally occurring environments of home, education, work, healthcare and in the community
• Transitions and times of change can be particularly difficult for neurodivergent people. Diagnosis helps with self understanding, knowledge and autonomy so that individuals can be involved in planning and feel in control in preparing for and living through transitions.

Co-occurrence is the norm:

• Autism and ADHD commonly co-occur. Single condition pathways waste resources and extend waits for diagnosis and support.

Current provision does not meet needs:

• In 2021, only 1/14 Scottish health boards provided both autism and ADHD assessment for adults; 1/14 provided for neither and 12/14 provided for one or the other but not both.
• No service described comprehensive provision, or proportionate pathways in place that assist with scaling of response dependent on needs.

• Existing services are in high demand, but this is not matched by capacity to meet the need. The lack of services is compounded by a lack of skills and appropriate interventions within mental health services.
• Adults seeking assessment find that there is either no local service that they meet the referral criteria for, or there are long waiting times.
• Responsibility for providing diagnostic assessment has lain within Community Mental Health Teams (CMHTs). Thresholds for access to CMHTs leads to referrals from people seeking diagnosis and support related to neurodevelopmental conditions being rejected.
• Where neurodivergent people are involved with mental health services, there is a sometimes a mindset that diagnosis of neurodevelopmental conditions is not the remit of the team and there is a focus on pharmacological solutions and psychological therapies for mental health conditions, which may or may not be neurodevelopmentally informed.
• People who seek to access healthcare and professionals have highlighted the need for updated professional learning and a more neurodevelopmentally informed workforce.

New approaches are needed:

• There is limited provision of neurodiversity or neurodivergence affirming practice, psychoeducation, peer led support, environmental modification and supports in naturally occurring environments or access to expertise of allied health professionals.

• Co-production with neurodivergent people in developing services to meet needs was not commonplace. There is consensus on the need to develop meaningful partnerships and practice in line with the principle of 'Nothing about us without us'.
• There is consensus on the need for timely access to diagnostic assessment, better ways of supporting mental health needs and up to date professional learning.
• Adult neurodevelopmental pathways are the logical way forward but this is an uncharted approach in Scotland. This work will be breaking new ground.

Managing expectations, demand and capacity:

• It is important to note that in the short and medium term, it is expected that demand will increase.
• There is significant unmet need and under-recognition of autism and ADHD in adults. As services develop to address the unmet need, demand is expected to grow.
• As services develop new ways of building capacity to meet the need, clear communication and ways of managing expectations should be built in to planning.

Scoping Recommendations

• Neurodevelopmental Pathways: There is a need for neurodevelopmental pathways to replace single condition approaches, with the aim of autism and ADHD assessment and support being accessible in all 14 health board areas.
• Stepped Care: There is a need to develop local stepped care pathway models, which will mean forming new teams and partnerships to meet a need not currently met, with leadership from:
  • Tier 1-2: Third sector and Community services, with access to self help, peer support, psychoeducation and a range of provision before, during and after diagnosis
  • Tier 3: Primary care neurodevelopmental teams, with prescribing and differential diagnosis capability as well as direct access interventions and supports
  • Tier 4: Secondary care neurodevelopmentally informed teams

Good links are required across all levels in the pathway to ensure a 'step up' or 'step down' to best meet individual needs. Tests of change should support the development of effective models.

• Workforce: New service developments should broaden the membership and roles of the multi-disciplinary team.
• Professional learning, knowledge and skills: A planned, and strategic approach is needed to understand professional learning needs across the range of professionals who make up a neurodevelopmental team. Neurodevelopmental assessment and diagnosis can no longer be the role of a small number of 'specialists' rather it should be 'everybody's role' within stepped care mental health teams.
• Adult Neurodevelopmental Specification: In keeping with realistic medicine, we recommend investing in developing a proportionate cross sector adult neurodevelopmental service specification and standards, which are strategically aligned to children and young people's neurodevelopmental service specification in these lifelong conditions. Learning from pathfinder sites should contribute to this development.

While some of the work involves adaptations to existing services and mindsets, with resources being used differently, it is also acknowledged that the creation of new services and pathways requires new resource and the recruitment of a workforce with a broad range of skills deployed with an expectation of meeting the needs of adults with neurodevelopmental conditions. Needs cannot be met through tweaking CMHTs.

The Covid-19 pandemic and recovery process is an important context. The wellbeing of staff, as well as people they support, is central to any effective service development.