NAP Board Minutes – 31 January 2024

Date & Venue:
Microsoft Teams (Online Meeting)

Key Highlights:

  • Leadership & Governance Updates:
    • Minutes and action log approved.
    • Ongoing discussions about autistic representation on the Learning Disability & Autism (LD&A) Programme Board.
    • Poll to be issued regarding NAPB joining the Coalition for Change.
  • Diagnosis Waiting List Updates:
    • Adult Diagnosis: 954 adults waiting (48% increase since the last initiative to reduce waiting times).
    • Children & Young People: 6,250 children on the waiting list (Norfolk Community & Health Trust), 3,040 at James Paget Hospital.
    • One-off funding secured to reduce wait times and support transition from children’s to adult services.
    • Discussions on the need for sustainable funding and lobbying for improved resources.
  • Pathological Demand Avoidance (PDA) Statement:
    • Document reviewed, with minor edits required.
    • Board agreed NAPB logo should be used instead of individual organisation logos.
    • Training links to be added before publication.
  • LeDeR (Learning from Lives & Deaths) Presentation:
    • LeDeR reviews deaths of autistic people and those with learning disabilities to improve care.
    • Key findings: Suicide, misadventure, and respiratory conditions are leading causes of death.
    • Concerns raised about underreporting due to a lack of autism diagnosis records in GP systems.
  • Norfolk Autism Directory Development:
    • Task & Finish Group to be formed for co-producing an autism directory.
    • Five planned sessions to design and test usability.
  • NAPB Two-Page Briefing:
    • Drafted to summarise the board’s purpose and priorities.
    • Approved in principle, pending grammar and formatting refinements.
  • Other Key Announcements:
    • Request for autistic representation on the Making It Real Board—autistic members invited to express interest.
    • ICB conducting a survey on long-term dental care plans for Norfolk—NAPB to discuss submitting a response.
    • Signposting documents for autistic adults to be reviewed and published.

Next Steps:

  • Finalise and publish the PDA position statement.
  • Continue work on reducing waiting times and securing sustainable diagnosis funding.
  • Form Task & Finish Group for autism directory development.
  • Review and publish signposting information for autistic adults.

Next Meeting: 26 March 2024, Microsoft Teams.

To read the full minutes click here

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