NAIT Adult Neurodevelopmental Pathways report

Pathfinder Sites: Mechanisms for change

The Adult Neurodevelopmental Pathways Interim Report,^[6] June 2022 summarised the early work undertaken across all 4 sites.

Overall aims of the work in pathfinder sites were to:

• Prepare to introduce a single stepped care pathway for adult Autism and ADHD, with staff confident to identify, assess and diagnose both conditions.
• Develop local pathways which deliver graded and proportionate support before, during and after diagnosis with strong links between Tiers 1, 2 and 3 to avoid unnecessary blockages and waiting lists.
• Undertake work linked to four key areas summarised below: Workforce development; Mechanisms for change; Identifying where this service will be offered and Developing support to meet needs.

Pilot sites (Fife, Borders, Lanarkshire and Highland) are undertaking focussed work, adapted to local priorities and intended to inform future service structures and an adult neurodevelopmental pathway approach across Scotland. The areas of focus for pilot sites include:

Workforce development:

• Broadening the range of professions involved in assessment, diagnosis and support.
• Recruitment and retention.
• Development of professional learning and understanding needs.
• Demand – Capacity Modelling.
• Leadership models.
• Models of multi-disciplinary working.

Where do autism and ADHD support, assessment and diagnosis happen? Potential changes might include:

• New Primary Care mental health teams.
• Allied Health Professionals and Nurse led ND teams at primary and secondary care levels.
• New partnerships between health professionals and third sector teams.
• Third sector partnerships, with shared governance of clinical roles undertaken out with NHS teams.
• Changes in mindsets in mental health teams around the value & therapeutic importance of neurodevelopmental diagnosis.

Mechanisms for change:

• Involvement of people with lived experience in local decision making.
• Local neurodevelopmental and autism strategy groups (including neurodivergent people).
• The NAIT Adult neurodevelopmental pathways national professional's network.
• Development of professional learning to encompass a neurodiversity informed approach to practice across professions.
• Development of a Community of Practice interested in environment and participation focussed approaches.

Developing support to meet needs:

• Trial a range of evidence informed support provided before, during and after diagnosis (e.g. Psychoeducation; Group and individual information sessions; Self-help materials and guides; Signposting to peer-to-peer supports).
• Develop 'patient information' resources about neurodevelopmental assessment.
• Review of evidence for current and new practices.
• Share resources developed across Scotland.
• Liaison with Further Education establishments to develop autism informed practice.
• Exploring links with local employment support provision.

Mechanisms for change

The plans for developing neurodevelopmental pathways should be grounded in an understanding of modern change theory, which supports whole systems change and is focussed on a shared purpose rather than separate interests. There is no single or linear path to identifying a problem, solutions and outcomes but rather the complex inter-related factors should include an understanding of real world context, mechanisms and outcomes. Small teams can leverage big change at a systems level through the right mechanisms, for example, through new partnerships and networks, which challenge historical assumptions, silos and hierarchies and support people to take action because people experience connection with shared values. There was a strong sense across the pilot sites of the real desire to better meet the needs of neurodivergent people and that all involved were glad of the chance to take time to focus on this, with old and new partners and to bring their skills, passion and experience to this challenge.

In pathfinder teams, mechanisms include:

• Passionate, informed and motivated local leaders with influence, vision, positive relationships, persistence and understanding of local processes, are central to making this work happen. This has been strongly evident as a factor in achieving all that has happened in the first 12 months of this work.
• Involvement of people with lived experience in shared planning and local decision making. This means that the focus of change is more likely to feel like the right thing to do and more likely to meet the needs of neurodivergent people.
• Establishing a local neurodevelopmental pathway strategy and planning group, which includes cross sector and lived experience membership. All four sites now have these in place, to develop a locally relevant plan; to maintain a shared focus on implementing the plan, reviewing it and learning. The group is more than the sum of its parts and there is power in the relationships which are inter-dependent and collaborate across the whole system.
• Writing down a shared purpose and values, which helps team members to step outside of the operational complexity, seek solutions to the apparent barriers imposed by the system and to ask why can we not do this differently? or how can we do this differently?
• Finding your people. Within local areas and through the NAIT professional networks, practitioners have reported the value of finding other people who share their vision, passion, motivation, experiences, knowledge, learning, questions and who notice and understand the huge achievement of a seemingly small step or who understand when things you work really hard at seem to take forever to move forward.
• All four sites have been open to sharing resources and practical materials they develop, e.g. job descriptions, FAQs for referrers, local websites, patient information resources and have contributed their expertise and feedback to national NAIT Neurodevelopmental pathway resources.
• Community of practice: this pathfinder work has highlighted the desire for a community of practice which will be led by NAIT going forward and will underpin a national endeavour to improve experiences of neurodivergent people across Scotland, within a neurodiversity paradigm. This community brings a point of focus on evidence informed ideas and opportunities for learning and professional development.
• Having ways to articulate the focus of change is an important factor. This year's work has provided opportunities to have conversations about changing mindsets, stepped care, interventions which focus on environmental modification, neurodiversity affirming language and practice and neurodevelopmentally informed assessment and diagnosis. Partners have shared that they have learned from listening to different perspectives from within and outside their usual circles of contact.
• Access to practical guidance and resources to enable professionals to feel confident in assessment, formulation, sharing diagnoses and providing supports in line with evidence informed guidelines.
• Engagement with and access to relevant professional learning is another key mechanism to build the capacity in the workforce to meet the aspirational action plans set. There is an ongoing requirement from local teams, NAIT and NES to understand needs and to look for ways to meet this need.
• Managing expectations has also emerged as an important mechanism. There is a fear amongst teams setting up new services (from a position of there being no previous way of meeting the need) that they will be inundated and this has indeed been the case in some areas. Just as staff are developing skills and confidence, teams can feel like they are letting people down by not having the capacity to meet the demand. For neurodivergent people, clear expectations are important. People often understand about waiting when they feel informed. The pathfinder sites working with NAIT and neurodivergent people, have developed FAQs for referrers and people seeking assessment which explains a phased approach and why some people may not yet be able to access assessment.

Workforce development

NAIT have worked in partnership with pathfinder sites to provide support for sustainable change, in the following ways:

• Identification of pathfinder site areas and support to write proposals and action plans
• Hosting monthly pilot site meetings, to support ongoing monitoring
• Providing responsive support to services to address practical issues arising
• Hosting a National Adult ND Professionals Network which will continue to meet four times per year
• Hosting the NAIT Neurodivergent Partners Reference Group which meets regularly and works with us to inform the range of work underway
• Regular liaison and partnership with NES to identify shared and complementary roles in relation to Adult ND pathways and professional learning
• Engaging in discussion with a range of professional partnerships, networks and organisations (e.g., Professional bodies, FASD Hub, Inspiring Scotland, ARC Scotland and UK wide networks)
• Development of resources to support delivery of professional learning and application of a neurodevelopmental approach in pilot sites:
  • Hosting a national webinar – Supporting Adults with Neurodevelopmental Differences^[7]
  • Offering three Adult Neurodevelopmental Assessment Workshops for pilot sites (April, May, December 2022)
  • Writing the Adult ND Assessment Workbook^[8] to accompany workshops, with guidance on assessment tools and processes for neurodevelopmental assessment
  • Supporting the completion of a trial version of the Fife Adult Neurodevelopmental Questionnaire (Fife Adult NDQ) developmental history assessment tool
• Adult ND Assessment Tool: NAIT Early Neurodevelopmental Questionnaire^[9]
• Adult ND Assessment Tool: NAIT Assessment of Sensory Preferences^[10]
• NAIT Sensory Preferences Checklist for Adults^[11]
• Hosting ACE+ ADHD Training
• Hosting ADOS Training for pilot sites
• Writing NAIT Guides^[12] in response to issues arising in pilot sites, A full list of relevant NAIT resources is provided in the appendix - for example, guidance on:
  • Language Matters – Terminology Guide
  • ADHD Prescribing and Private Diagnosis
  • ICD-11
  • Autistic Masking
  • Using ADOS with Adults FAQs
  • Guide to Who can Diagnose ADHD
• Sharing of resources developed in pilot sites (e.g., FAQs on the new pathway; web resources, psychoeducation materials)

Impact and learning

• All four pathfinder sites have actively engaged in all of these professional learning opportunities and provided positive feedback.
• Recruitment of staff to the pathfinder funded posts took several months and in some areas is still underway (11 months on). This means that all areas are likely to require further and ongoing opportunities for workforce development.
• There is a shared understanding that attending training is not the only means of building capacity and confidence in the workforce.
• There has been a strong focus on looking for ways to embed a mentorship and partnership working approach which uses the skills of local professionals with expertise and builds a local community of practice that will continue to actively plan to meet workforce development needs and succession planning.
• Lanarkshire have had a particular focus on understanding professional learning needs and will use new funding to employ a training co-ordinator. We look forward to future updates on this work.

The NAIT Neurodevelopmentally Informed Practitioners information below highlights 7 stages of career long professional learning for neurodevelopmentally informed practitioners, which could support future workforce planning and development.

Neurodevelopmentally Informed Practitioners

Graded and career long learning opportunities:

1. Students and trainees

• Course materials and placement tasks support engagement with stages of neurodevelopment, inclusive practice and the neurodiversity paradigm.

2. Newly qualified / New to this field

• Mentoring and coaching, reflective logs
• Watch one, do one, reflect (with supervision)
• ND Informed and skilled level learning
• Online resources (e.g. Symposium, NAIT, NES, Education Scotland resources)

3. Skilled level in aspects of neurodevelopmental assessment, diagnosis and support

• Engage in local programme of professional learning and mentoring, supported by national resources.

4. Enhanced level in aspects of neurodevelopmental assessment, diagnosis and support

• Specialist training (e.g. ADOS)
• Attend and deliver local learning, coach and mentor others (using train the trainer materials).

5. Expertise level in aspects of neurodevelopmental assessment, diagnosis and support

• Lead strategic planning for workforce
• Deliver and develop training materials

6. Accredit post graduate study

• Practice focussed on PGCert, PGDip, Masters, PhD focussed on ND conditions.

7. Professional bodies accrediting institutions

• Learning accredited by professional bodies (e.g. GTCS, Royal Colleges, SIGN, NHS Scotland)

Where does assessment, diagnosis and support take place?

The NAIT recommendation was for pathfinder sites to develop stepped care approaches across all four tiers, from the baseline of there only being provision in Tier 4. There has been no previous research or guidance to refer to in decision making and the nature of pathfinder work is to break new ground and learn from this. Within the time frames, we found that local areas made pragmatic decisions about where to start.

• All four sites had a secondary care (Tier 4) CMHT which was the only team with a role in assessment, diagnosis and support of autism and ADHD. Three of the four areas opted to use the additional funding mainly at this tier, with Fife including work at all tiers.
• Highland have developed a new Tier 4 adult ADHD pathway in 2022. In phase 1, this is for those meeting the CMHT threshold (where there previously was no ADHD pathway). This will provide a basis for future work to develop a stepped care and neurodevelopmental pathway. They have also focussed work on professional development of CMHT staff experienced in ADHD, developing skills in neurodevelopmental and autism assessment and working alongside the autism team. And in parallel, trialled assessment of ADHD when co-occurrence is considered as part of an autism assessment, through the specialist autism diagnostic team. No third sector, community or primary care initiatives have been part of this phase of work but are all under consideration as future developments.
• Borders have focussed initially on addressing the waiting list of people meeting the Tier 4 CMHT threshold with separate lists for autism and ADHD assessment. They appointed an OT to lead the neurodevelopmental team and support professional learning and capacity building within the CMHT. The leadership team have also engaged with local third sector stakeholders and have reviewed the commission of work to third sector partners Autism Initiatives (AI) with whom they reached a shared governance agreement for AI to undertake autism assessments for less complex cases who do not meet CMHT thresholds alongside follow up support at Tier 2. This has led to a challenging situation where some on the waiting list do not meet thresholds set for either service and no alternative is being offered at this time. No community or primary care initiatives have been part of this phase of work but are all under consideration as future developments seek to build on this work.
• Lanarkshire have also focussed on Tier 4 and have taken a decision to build on separate autism and ADHD pathways. They succeeded in identifying permanent funding through the HSCP for an all adult autism pathway and recruitment to this team is underway. The focus of pathfinder funding has been to recruit a training lead and build knowledge and skills within the existing workforce for both autism and ADHD assessment and taking a neurodevelopmental approach. Separate work in Lanarkshire has led to the provision of Primary Care Mental Health Occupational Therapists linked to all GP practices. Local third sector and lived experience stakeholders are part of the neurodevelopmental strategy group. There are opportunities to build on the work and partnerships in place this year to develop stepped care provision.
• Fife used the funding at all tiers and have undertaken tests of change in NHS staff working in the University of St Andrews. The pathfinder funding has in part been used to appoint senior staff to co-ordinate and make links across this tiered pathway.
  • Tier 1: Work has been completed to develop self help information and resources for adults with neurodevelopmental conditions, on the NHS Fife Mood Café website^[13]
  • Tier 2: There is a One Stop Shop in Fife, run by third sector partners Scottish Autism. An NHS OT is now working across the One Stop Shop and in the local community team to deliver collaborative support including psychoeducation groups.
  • Tier 3: There is a primary care mental health team test of change underway.
  • Tier 4: There is an ongoing focus on professional learning and building capacity within the CMHT.

The practicalities of setting up new ways of working at all tiers cannot be underestimated. There has been a lot of learning from the work this year and we anticipate using this to undertake further pathfinder work in the years ahead.

Summary of changes in Adult Neurodevelopmental Pathfinder Sites

We asked each of the pathfinder sites to report on 15 key areas of focus over the last 12 months (November 2021-november 2022). This is summarised in the tables below, with red indicating this factor is not in place, amber indicating that it is in progress or partially in place and green indicating that it is in place. White boxes indicate missing data at the point of publication.

This outcome is shown visually below and represents positive changes and the direction of travel for pathfinder sites. These factors could be used by other HSCPs reviewing pathways and could inform standards within a future adult neurodevelopmental pathways specification.

Developing support to meet needs

There was a strong consensus, backed up by research evidence, that diagnosis alone is not the most helpful thing but rather the support surrounding diagnostic assessment before, during and after a decision is made is what makes a difference to people. One size clearly does not fit all and there is a need for choice and access to all of the range of supports shown below over time.

The collective work of pathfinder site teams, in partnership with neurodivergent people, third sector, NAIT, NES and the research community is required to develop, implement and evaluate supports.

• Peer support
• Support surrounding diagnosis – 'Psychoeducation' or 'post diagnostic support' which people can access before, during or after diagnosis.
• Information about local referral process.
• Psychological, OT and SLT therapies which are neurodiversity affirming and take account of neurodivergent thinking styles.
• Practical support for particular issues e.g. to engage in helpful routines; apply strategies in daily life; address sleep, communication and sensory needs; help to understand reasonable adjustments and how to access them in education, employment or other settings.
• Self-help materials and guides reflecting that knowing which diagnoses apply to you makes self help more effective.
• Web based information and helplines.
• There is a need for evidence review and a source of guidance about recommended interventions and approaches to meet different needs.
• Support for families and carers of neurodivergent people.
• Prescribing of medication and ongoing monitoring – where this is indicated, alongside shared care agreements.