Adult ADHD Lived Experience Group

Meeting Summary Minutes

Date: 29th April 2025

Time: 5:45 PM

Chair: Amanda Rafferty (NHS Greater Manchester ICB)

Attendees: Amanda Rafferty, multiple anonymised stakeholders from NHS Trusts, ICBs, and affiliated organisations or/and people with lived experience of ADHD.

1. Welcome and Presentation Overview

• Amanda Rafferty presented key updates on the current progress of the neurodivergent pathway work.
• Emphasis was placed on structuring workshop materials clearly and accessibly for all participants.

2. Feedback on Presentation and Materials

• Stakeholders suggested:
• Separating complex options on presentation slides (e.g., Option A and B) to enhance clarity.
• Printing alternative formats of materials for workshops, especially to support individuals with dyslexia or other neurodivergent conditions.
• A brief discussion highlighted:
• The need to reduce visual busyness on slides (e.g., font variation, NHS logo prominence).
• The potential benefit of colour changes (e.g., avoiding white/black contrast, using pastel or blue/yellow backgrounds).
• A link to dyslexia-friendly design guidance (e.g., fonts, font sizes, layout) was shared in the meeting chat.
• Amanda committed to exploring organisations that may be able to support redesigning materials in a more accessible format.

3. Additional Clinical and Lived Experience Considerations

• Participants highlighted that:
• Some individuals may appear to be doing well but could be masking underlying difficulties.
• Body dysmorphia and dysregulation can be prominent concerns, potentially leading to self-harm or eating disorders.
• The importance of recognising how hormonal cycles impact people with ADHD and autism, especially in relation to PMDD (Premenstrual Dysphoric Disorder).
• PMDD is under-recognised but can contribute to relationship breakdowns, mental health crises, and misinterpretation of clinical presentation.

4. Accessibility and Inclusion

• Recommendations were made to:
• Design PowerPoint materials using dyslexia-friendly formatting.
• Consider producing printed copies for those who may struggle with digital accessibility.
• Amanda and another attendee agreed to:
• Share relevant guidance.
• Explore collaboration with organisations capable of delivering neurodivergent-friendly designs.

5. Future Planning

• Meeting Cadence:
• Meetings will continue fortnightly at 5:45 PM, with the next meeting confirmed for early May (one week into the consultation period).
• Communication and Follow-Up:
• Amanda to ask Scott to send out reminders for future sessions.
• A participant will email Amanda regarding prioritisation of key areas, which will then be shared with other team members, including Sandy.
• Amanda will forward an email template for stakeholder engagement (e.g., unions) to support broader outreach.

6. Closing Remarks

• Amanda thanked all attendees for their contributions.
• The meeting concluded with appreciation for the thoughtful feedback and agreement to continue collaboration at the next session.