Neurodiversity Strategy
Argyll and Bute Council · 29 November 2023
Back to Argyll and Bute HSCP Integration Joint Board (IJB) — 29 November 2023 and its agenda
Text extracted from the council's PDF. Layout and reading order may differ from the original.
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Neurodiversity Strategy James Crichton - Programme Manager
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What is neurodiversity? • Neurodiversity is a term that refers to the natural differences between people. “Neurodiversity is the statistical normal range of a function in a population at a particular age. A person can’t be neurodiverse; diversity is a trait of the whole group, not a specific individual”. • It most importantly begins from the perspective that neurodiversity is a strength, it brings a range of perspectives and ways of engaging with the world. • We know that some of our most talented and gifted people have neurodivergent conditions such as dyslexia, autism and ADHD. (Can you give any examples of famous people?) It is thought that up to 15% of the population are thought to be neurodivergent. “Neurodivergent is a term used to describe individuals where a selective neurocognitive function falls out with the prevalent societal norm”.
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What is neurodiversity? • Neurodiversity is a term that refers to the natural differences between people. “Neurodiversity is the statistical normal range of a function in a population at a particular age. A person can’t be neurodiverse; diversity is a trait of the whole group, not a specific individual”. • It most importantly begins from the perspective that neurodiversity is a strength, it brings a range of perspectives and ways of engaging with the world. • We know that some of our most talented and gifted people have neurodivergent conditions such as dyslexia, autism and ADHD. (Can you give any examples of famous people?) It is thought that up to 15% of the population are thought to be neurodivergent. “Neurodivergent is a term used to describe individuals where a selective neurocognitive function falls out with the prevalent societal norm”. • The majority of people are neurotypical. “Neurotypical is a term used to describe individuals where a selective neurocognitive function falls within the prevalent societal norm”. • Services are often designed in a way that is more receptive to people who are neurotypical and less accessible to those who are neurodivergent, who think and see the world differently. • People who are neurodivergent, particularly autistic people, can have poorer health outcomes and a higher overall risk for early mortality. • Adults with a neuro developmental disorder are more likely to attempt and complete suicide.
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Neurodevelopmental conditions • Neurodevelopmental conditions in Scotland affect 10-15% of the population. • Conditions which are often grouped under the heading of neurodiverse include: • ADHD • Autism • Dyslexia • Dyscalculia • Intellectual Disability • Tourette's and Tics • Autism and ADHD commonly co-occur. View expressed is that single condition pathways waste resources and extend waits for diagnosis and support.
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Prevalence • The prevalence of ASD (autism spectrum disorder) in adults is approximately 1%. • Most autistic adults do not have an intellectual disability, and most do not have a diagnosis. • Prevalence rates vary for adult ADHD, when using the lowest estimates, it can be anticipated that approximately 2% of the adult population have ADHD. • Adults with a neurodevelopmental disorder are likely to also have a mental health issue / comorbidity being the norm. • 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. • It is estimated that about 5% of the users of UK mental health services are autistic • 15% of adults in psychiatric care have ADHD. • Young people and adults with untreated ADHD are more likely to develop substance misuse disorders
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Why diagnosis matters • Personal identity–not bad, ill or broken, just different • Understanding my own life experiences from a new perspective • Access to the right support, including financial benefits and relevant information • Protection under the Equalities Act or access to reasonable adjustments in a range of places • Finding a community of peers and ‘people like me’ • Access to medication where appropriate.
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NAIT Terminology Difference not Deficit • a strengths-based approach, which considers difference not deficit. • Differences described and experienced by individuals are likely to be lifelong - we do not intend to ‘cure’ or ‘fix’ people to stop them being neurodivergent • the focus is on support for individuals and inclusive environments at home, in education, in the workplace and in the community. Neurodevelopmental disorder • is a term used in DSM 5 and reserved for those who present with a ‘functional’ impairment in day- to-day life due to difference in one or more neurocognitive function which lie at the extreme of, or out with the normal range.
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Adult Neurodevelopmental Pathways Report - March 2023 • Outcome from 4 pathfinder sites • NHS Borders • NHS Fife • NHS Highland • NHS Lanarkshire • NAIT found there are no comprehensive pathways for adults with ADHD or neurodevelopmental disorders who don’t have significant co-occurring mental illness. • No service described comprehensive provision, or proportionate pathways in place that assist with scaling of response dependent on needs. • CMHT referral criteria heavily based on risk and complexity / ND referrals either don’t meet thresholds or are deprioritized. • While CMHTs may be heavily involved in assessment and care – recognised that a Stepped Care Adult Neurodevelopmental Pathway is required in each locality. • Where there are pathways, there are long waiting lists because referrals have been absorbed into secondary care. • Adults seeking assessment often find that there is either no local service that they meet the referral criteria for, or there are long waiting times. • Staff often overwhelmed and not fully trained on neurodevelopmental assessment and support.
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Additional ND Pathway Recommendations Short Term: Local work • Recommendation 1: An adult neurodevelopmental pathway strategy and planning group to be hosted in all Health and Social Care Partnerships. • Recommendation 2: Support to develop local neurodevelopmental pathway action plans. Short Term: National work • Recommendation 3: A Neurodiversity Affirming Community of Practice. • Recommendation 4: ‘Support before, during and after diagnosis’. • Recommendation 5: Build a Neurodevelopmentally Informed workforce in Scotland. Longer Term • Recommendation 6: Development of neurodevelopmental pathway standards and guidelines for assessment, diagnosis and support. • Recommendation 7: Understanding demand and capacity within the system, to meet the needs of neurodivergent adults. • Recommendation 8: Neuro-inclusive Further Education and Employment environments. • Recommendation 9: Build a shared expectation that support should be available at any stage for people who identify as neurodivergent. • Recommendation 10: Seek to understand the changes needed to effectively meet the mental health needs of neurodivergent people.
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Adult Neurodevelopmental Pathways Report - March 2023 Graded Approach To Support
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Adult Neurodevelopmental Pathways Report - March 2023 Graded Approach To Support
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Issues for the Strategy and Planning Group to consider • Training awareness for staff • Workforce issues • Involvement of neurodiverse people in strategy and planning • Engagement on high level strategic aims • Link to regional practice network • Commitment to neurodevelopmental approach • Co-produce proposed pathway appropriate to local context • Review local workforce needs • Develop new roles e.g. non-med prescribers / Nurse or AHP Lead role Wider links to ND pathways and support • 3rd sector partners • Primary Care • Employment Services • Education Services
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Break Out Questions 1 Can you describe our current approach to supporting people with neuro- developmental conditions in A&B? - do we have a pathway? - does it facilitate diagnosis for adults / children? 2 In light of the NAIT report, what needs to change to deliver improvement in support and diagnosis? 3 Who needs to lead the change? Who needs to be involved in the change? 30 mins discussion Nominate a lead in each group to capture and feed back.
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Summary of Next Steps • Capture feedback from today • Establish Strategy and planning Group • Agree membership and roles • Agree work plan for the group • Seek stakeholder involvement • Any other immediate actions? • Any Questions?