AGM and Conference 2026
The Thalidomide Society Annual General Meeting and Conference 2026
A central part of the meeting included the formal approval of the previous year’s minutes, followed by the Chair’s report, which highlighted achievements such as the oral history project, enhanced personal support initiatives, and the relaunch of The Independent newsletter. The Treasurer presented the financial overview, reporting an income of £32,069 against expenditure of £76,539, with total reserves standing at £435,665. Trustees Mandy, Geraldine, and Darren were re-elected, and Elaine was formally elected to the board after being co-opted in April 2025.
Following on from the AGM, a key highlight of the Conference was a detailed presentation by independent living advisor Neil Spooner on direct payments and the employment of personal assistants (PAs). His session offered practical insights into the assessment process, the responsibilities of being an employer, and the flexibility that direct payments can provide. Members shared their own experiences, discussing both the benefits, such as increased independence, and challenges, including recruitment difficulties, administrative burdens, and navigating local authority processes.
Sally and Claire from the Thalidomide Trust provided an overview of the wide range of support services available to beneficiaries. This included health and well-being support, guidance for social care assessments, and resources such as PA recruitment packs and support planning tools. They also highlighted funding opportunities through the Grunenthal Foundation, including support for personal assistance.
This was followed by an inspiring introduction to a new community outreach initiative and volunteering opportunity, Living with Thalidomide. This project aims to empower members to share their personal stories within local communities. Mandy shared her positive experience of delivering talks, highlighting the strong and meaningful responses she has received from audiences.
Reflecting on her growing involvement, Mandy noted that she has another talk scheduled next week and is continuing to receive bookings through to the end of the year. She encouraged others to consider getting involved, describing it as a truly worthwhile experience and emphasising how audiences are often amazed by the full and accomplished lives lived by members of the community.
The volunteering opportunity will include training and ongoing support for those interested in taking part. For more information, please email info@Thalidomidesociety.org.
As a mark of respect, the morning finished with Simone Illger reading her poem and a minute’s silence for those friends lost in the past year.
The afternoon session provided an opportunity to support the project, ‘Personal Support, Maintaining our Dignity and Independence,’ for important discussions around daily living challenges and evolving care needs, while maintaining independence. Members exchanged valuable peer insights on topics such as managing direct payments, building relationships with carers, and adapting to changing health conditions.
The 2026 AGM/Conference demonstrated the strength of the Thalidomide community, highlighting both shared challenges and collective progress. With continued collaboration, advocacy, and support, the Society remains committed to empowering its members and shaping a more inclusive future.
