NAIT Adult Neurodevelopmental Pathways report

Recommendations and next steps

There are some actions which can be taken forward in the short term, to build service capacity and improve experiences for adults with neurodevelopmental differences.

Local Areas: For local areas to better meet the needs of adults with neurodevelopmental conditions we recommend the following:

Recommendation 1: An adult neurodevelopmental pathway strategy and planning group to be hosted in all HSCPs

• Including neurodivergent people to identify a local action plan priorities
• Actions at all four tiers of the stepped care pathway to work towards providing a joined up autism and ADHD service
• A plan to support all mental health staff to engage in professional learning focussed on up to date Neurodevelopmentally Informed practice at skilled level
• Engagement with Primary Care Mental Health teams in relation to including AHP and nurse led neurodevelopmental teams offering assessment, diagnosis, psychoeducation, prescribing and health review and other brief direct access interventions with a focus on environmental modification and supports in naturally occurring environments
• Development of information for referrers and people seeking support
• Review of how communication accessible and inclusive the local health care settings are, with reference to the RCSLT Communication Access^[15] training and 'More Than Words'^[16] guidance
• Review of partnerships with third sector organisations to join up information and local support provision, with consideration of diagnostic assessment being part of a shared governance agreement

Recommendation 2: Support to develop local Neurodevelopmental Pathway action plans:

• The National Autism Implementation Team should support development and review of local action plans overseen by local strategy groups.

National: A national programme of work to support local areas could include Short Term actions (over the next 12-24 months):

Recommendation 3: Establish a Neurodiversity Affirming Community of Practice:

• NAIT will provide leadership to the Adult Neurodevelopmental Professionals network to build relationships and support and combine expertise as work progresses. This network will be aligned to a new Community of Practice.

Recommendation 4: A focus on 'Post Diagnostic Support' or 'Support before, during and after diagnosis'

• 'Post Diagnostic Support' for adults seeking and receiving diagnostic assessment should be relevant, proportionate and individualised. There is a role for online and face to face support and access to informed peers and multi-disciplinary professional teams.
• Local services to work in partnership with third sector organisations funded by Scottish Government to provide support under the umbrella of 'Post Diagnostic Support'.
• Further development of resources, signposting and supports before, during and after diagnosis, which are relevant across co-occurring neurodevelopmental conditions.
• Undertake a review and tests of change with a focus on 'Support Surrounding Diagnosis' to understand key components and the optimal range of provision (for example SPARKS programme in Glasgow and the Fife psycho education programmes). This work, building on current work underway in local areas, could develop materials and guidance for local delivery with the combined expertise of neurodivergent people, AHPs, Psychologists, Nurses and Third Sector staff.

Recommendation 5: Build a Neurodevelopmentally Informed workforce in Scotland

Workforce development and professional learning. The focus on this is important in the short and longer term and will continue to be informed by the Scottish Government Leadership and Engagement work with neurodivergent people. NHS Education for Scotland (NES) is a key partner in the development, provision and implementation of the range of up to date professional learning, that will build capacity in the workforce across informed, skilled, enhanced and specialist levels across professional groups.

• The delivery of an Informed level neurodevelopmentally informed professional learning resource led by NES, in partnership with key stakeholders for all health and social care professionals.
• The delivery of Skilled – Enhanced level neurodevelopmentally informed professional learning building on the work from NAIT, Pathfinder sites, NES, professional bodies, stakeholders and inclusive of NES co-ordination of ADOS training, ADHD training and other related professional learning planning.
• Dedicated resource for Speech and Language therapists and Occupational therapists working in all neurodevelopmental teams to undertake diagnostic assessment and to deliver supports focussed on psychoeducation and environmental modification in naturally occurring environments.
• A national focussed programme of work to increase provision of non-medical prescribers to work in all neurodevelopmental teams.
• Develop core neurodevelopmentally informed practice materials for health professional pre-qualification training programmes and require their inclusion in accredited courses in the same way as the Initial Teacher Education Autism resources, developed from the Scottish Government Autism Round Table and Action Plan are now being used in all initial teacher training programmes.
• Formal planning in collaboration with Primary Care Mental Health leads, to enable alignment and implementation of services which are neurodevelopmentally informed and part of a stepped care pathway.

Based on the work outlined in this report and the wider context, we recommend Longer Term actions to improve experiences of adults with neurodevelopmental differences:

Recommendation 6: Development of Adult Neurodevelopmental Pathway standards and guidelines for assessment, diagnosis and support

• A co-produced National Adult Neurodevelopmental Specification and Standards would provide integrity to the work underway.
• Update SIGN guidelines relevant to autistic people and people with ADHD.
• Develop a 'Once for Scotland' neurodevelopmental conditions information and signposting resource, to include self-help resources and links to sources of a range of support.
• Development of a position statement on self-identification, which explores risks and benefits and associated support needs.

Recommendation 7: Understand demand and capacity within the system, to meet the needs of neurodivergent adults

• Develop a systematic approach to understanding demand and capacity within the system, in partnership with Public Health Scotland.

Recommendation 8: Neuroinclusive Further Education and Employment environments

There is a greater need for support which do not seek to 'fix' or 'cure' a person or to work to make them more neurotypical, rather there is a need for updated approaches which start with anticipatory or early support and adjustments to enable participation and engagement in naturally occurring environments (e.g., education, employment, home life, community, leisure and health and social care settings).

• Identify ways to involve these sectors as mechanisms for support within neurodevelopmental pathways.
• Review the provision and professional learning needs in Universities and Further Education establishments for people with neurodevelopmental conditions.
• Promote the public sector as inclusive employers– building on the NAIT systematic review and national research programme to understand experiences of autistic people working in the public sector, develop guidelines, information and resources to support our peers, colleagues and employees who are neurodivergent.
• Aim to increase the proportion of autistic and neurodivergent people in employment. Continue to make local and national connections with regard to people with expertise in support for training, recruitment and maintaining employment including how to ask for and access individualised reasonable adjustments and use of Individual Placement Support (IPS).

Recommendation 9: Build a shared expectation that support should be available at any stage for people who identify as neurodivergent

• Support across the lifespan; before, during and after diagnosis.
• Recognition that diagnosis, where considered important to an individual, should be made available.

Recommendation 10: Seek to understand the changes needed to effectively meet the mental health needs of neurodivergent people

• In partnership with neurodivergent people.
• Considering anticipatory and responsive approaches for all levels of distress.
• Including recognition of both neurodevelopmental and mental health needs.
• With trauma informed and neurodiversity affirming models of care.

Proposed standards for Adult Neurodevelopmental Services

This report and work that has contributed to it provides a strong basis for the development of standards by consensus. These should reflect the range of sources of evidence and perspectives and both support and challenge those leading and working in contexts where the standards will apply.

Recommendations

Based on learning so far, ten recommendations are provided to support the development of services in Scotland, locally and nationally, which better meet the needs of neurodivergent people. These include short term steps, over the next 12-24 months and longer term work.

1. An adult neurodevelopmental pathway strategy and planning group to be hosted in all HSCPs.

Including neurodivergent people and cross sector multi-disciplinary partners, who can support a Stepped Care approach and local action planning.

2. Support to develop local Neurodevelopmental Pathway action plans.

The National Autism implementation Team (NAIT) should support development and review of local action plans, overseen by local strategy groups.

3. Establish a Neurodiversity Affirming Community of Practice.

NAIT will provide leadership to the Adult Neurodevelopmental Professionals Network to build relationships, facilitate support and combine expertise as work progresses. This network will be aligned to a new Community of Practice.

4. A focus on 'Post Diagnostic Support' or 'Support before, during and after diagnosis'.

Develop relevant, proportionate and individualised support for neurodivergent people. Provision to include online, face to face support, access to informed peers and multi-disciplinary professional teams.

5. Build a Neurodevelopmentally informed workforce in Scotland.

This is important in the short and long term. It will continue to be informed by the Scottish Government Leadership and Engagement work with neurodivergent people, with NES and NAIT as key partners.

6. Work towards development of Adult Neurodevelopmental Pathway standards and guidelines for assessment, diagnosis and support.

Including a co-produced National Adult Neurodevelopmental Specification and Standards, which would provide integrity to the work underway and updated SIGN guidelines.

7. Understand demand and capacity within the system, to meet the needs of neurodivergent adults.

Develop a systematic approach to understanding demand and capacity within the system in partnership with Public Health Scotland.

8. Neuroinclusive Further Education and Employment environments.

Develop updated approaches to anticipatory or early support and adjustments to enable participation and engagement in naturally occurring environments.

9. Build a shared expectation that support should be available at any stage for people who identify as neurodivergent.

Whilst recognising that diagnosis, where considered important to an individual, should be made available.

10. Seek to understand the changes needed to effectively meet the mental health needs of neurodivergent people.

In partnership with neurodivergent people and considering anticipatory and responsive approaches for all levels of distress; including recognition of both neurodevelopmental and mental health needs, with trauma informed and neurodiversity affirming models of care.