NAIT Adult Neurodevelopmental Pathways report

Pathfinder Sites: Context

In 2022, the focus of pathfinder work has been on autistic adults and those with ADHD. The intention is to widen this going forward, to include consideration of other neurodevelopmental conditions, with the recognition that co-occurrence is the norm rather than the exception and that understanding individual profiles leads to better personalisation of support. For example, in time pathways should also meet the needs of adults with overlapping conditions: Pre-natal Alcohol Exposure, Fetal Alcohol Spectrum Disorder, Developmental Co-ordination Disorder and Developmental Language Disorder.

This current programme of work has focussed on assessment and diagnosis pathways, but these inevitably make links with developing access to proportionate, relevant, evidence informed supports before, during and after diagnosis for adults with neurodevelopmental differences, within a Stepped Care Pathway model.

Neurodevelopmental pathway status in 2021: Where did each area start?

NHS Borders

NHS Borders has a population of around 115,000 people, almost half of whom live in rural areas.

• In 2021, there was a nurse led adult autism pathway in the learning disability service but no autism pathway for all adults. The ADHD pathway was in development. Most ADHD assessments were completed by a single psychiatrist for people meeting Secondary Care (Tier 4) criteria.
• Service leads from psychology, psychiatry and nursing identified a strong will to develop a multidisciplinary approach to neurodevelopmental pathways, in which medics input, provide leadership and partnership but are not the sole providers. There was a strong drive to get the right people, with the right skills for an early and proportionate response.
• There was a local funding arrangement with Autism Initiatives about third sector support, which was due for review.
• There was no neurodevelopmental pathway strategy group or involvement of neurodivergent people in planning related services.

NHS Lanarkshire

NHS Lanarkshire is the third largest health board in Scotland with population of 655,000 across rural and urban communities in North and South Lanarkshire.

• In 2021, there was a high quality multi-disciplinary autism service for adults with learning disability but no pathway for all autistic adults. Most ADHD assessment was led by a single psychiatrist, with identified ADHD cases managed within the Adult Community Mental Health Teams (CMHTs).
• Previous training needs analysis highlighted the need for development of workforce skills and knowledge about neurodevelopmental conditions.
• A neurodevelopmental conditions strategy group had recently been established, including psychology, psychiatry, nursing and occupational therapy. The group had links with the local children's neurodevelopmental pathway. They were looking at ways to involve people with lived experience and were actively seeking funding within the health board to develop an autism pathway for all adults.
• Recent Local Authority consultation with service users and carers highlighted where it was felt services could be improved. These included:
  • Pre diagnostic support
  • Post diagnostic support
  • Employment
  • The lack of education, training and awareness raising for health and social care professionals

NHS Highland (North and West and Inner Moray Firth)

NHS Highland is the largest geographical health board area in Scotland including a large remote, rural and island population as well as urban centres. This part of NHS Highland (excluding Argyll and Bute) has a population of around 234,000 people.

• There was a longstanding adult autism service and pathway outwith the CMHT, led by 1-2 practitioners which was the hub for assessment, diagnosis and support. Demand was difficult to meet, with the small staffing allocation.
• Diagnosticians worked in close partnership with the Autism Initiatives led Highland One Stop Shop and there were links with Autism Rights Group Highland (ARGH), NAS Highland Branch and Scottish Autism post diagnosis group leads.
• There was no adult ADHD pathway for those who do or do not meet secondary care thresholds and no specific neurodevelopmental provision in primary mental health care. However, there were some skilled and interested psychiatry, advanced nurse specialists and non-medical prescriber staff interested in taking this work forward.
• A lifespan Neurodevelopmental Steering Group had been recently set up with involvement of children's services, the adult autism team, adult psychiatry, nursing, managerial staff, third sector and autistic people.

NHS Fife

Fife has a population of around 370,000 people, including a large student population, across urban and rural communities in 7 localities.

• Adult ADHD and autism pathways were managed separately.
• The adult ADHD pathway was in development and was managed within the CMHTs with a nurse specialist post supporting transitions, assessment and treatment in 3 locality areas.
• There was an established autism pathway for all adults meeting secondary care thresholds for acceptance of referrals. This was based within psychology for non complex autism assessments and within the CMHT for complex assessments. An experienced team supported clinicians making diagnoses.
• The well established Fife One Stop Shop, led by third sector partners Scottish Autism was an important resource. Recent investment from the partnership was agreed for a half time Occupational Therapist (OT) to be based within the One Stop Shop.
• Close links were established between St Andrews University and the North East Fife CMHT and efforts to work jointly with clinical staff from the university mental health team were underway to support triage and assessment (but not diagnosis or ongoing management). The university have in place an autism support group.
• A neurodevelopmental pathway strategy group had recently been set up, including psychology, psychiatry, nursing, OT and other partnership members. The group were keen to develop engagement with neurodivergent people.
• There are strong building blocks on which to develop an adult neurodevelopmental pathway though it is clear that the pathway will need to be resourced for development of self-help resources, third sector provision and the creation of the primary mental health tier.
• Discussions were in progress developing the Primary Care Mental Health vision for Fife. It was deemed important that the neurodevelopmental pathway would be aligned to these as it evolves.

Key messages underpinning neurodiversity informed services

In partnership with neurodivergent people, NAIT developed and shared key messages for supporting adults with neurodevelopmental differences which should underpin the development of future adult neurodevelopmental pathways. These key principles reflect the importance of approaching this work with a neurodiversity affirming mindset. It is acknowledged that the neurodiversity paradigm^[5] is a relatively new concept and guidance for practice is still evolving through new ways of working in equal partnerships between professionals, neurodivergent people and their allies.

Key Messages for supporting neurodevelopmental differences in adults

1. 'Nothing about us without us'

Meaningful co-production is central to developing a whole systems approach neurodevelopmental pathway that works for all people who access it.

2. Difference not deficit

Neurodiversity is a positive thing in society. A strengths based approach changes how we communicate about people, communicate with people, make adjustments and what services focus on.

3. Environment first

The basis of all effective support is having the right expectations and adjustments in the physical and social environment in every day naturally occurring settings of home, education, employment and the community.

4. Diagnosis matters

People seeking or receiving neurodevelopmental diagnoses tell us diagnosis matters in so many ways – understanding and celebrating personal identity, understanding past, present and future experiences, accessing relevant information and a community of peers, informing which supports and interventions are right for them.

5. Language matters

A range of preferences exist and one size does not fit all – we can listen and adapt the language we use to reflect individual and community preferences.

6. A neurodevelopmental lens

We can expect to meet people with neurodevelopmental differences in everyday life and in mental health services. We can approach everyone with an inclusive and positive mindset and the right lens on support we provide.