Who Does What On The NAC?

We are a user-led group that exists to represent the beneficiaries of the Thalidomide Trust by working in partnership with the trustees and the staff.

This involves being part of different committees and teams working towards improving the lives of all beneficiaries.

Find out more about who does what below.

Chair of the NAC

The Chair leads the NAC, chairs NAC meetings and ensures it operates properly. The Chair also maintains close contact with the Trust Executive Director and can publicly represent the NAC or Trust wherever appropriate.

The role is elected by the NAC members.

Current Chair: Geoff Spink

Thalidomide Trust NAC member Geoff Spink

Vice Chair

The Vice Chair works closely with the Chair in carrying out the Chair’s duties, and can also deputise for the Chair if necessary.

The role is elected by the NAC members.

Current Vice Chair: Mikey Argy

Thalidomide Trust NAC member Mikey Argy

Committees and Teams

Health & Wellbeing Committee

This is a joint trustee, staff and NAC Committee that advises the Board of Trustees. It oversees the wide range of Trust activities aimed at supporting the physical and mental health and wellbeing of the beneficiaries, their full participation in society and their quality of life.

The Committee is jointly chaired by a trustee and a member of the NAC. The NAC co-chair is elected by NAC members. Other NAC members volunteer for this committee or are chosen for their interest and expertise.

NAC members are:

  • Carolyn Desforges, Co-Chair
  • Mikey Argy
  • Graham Kelly
  • Helen Shore

Current priority issues:

  • Supporting both physical activity and mental health.
  • Helping beneficiaries access health services in a timely way.
  • Reducing health inequality by monitoring, understanding and tackling health needs.

Finance Committee

This is a joint trustee, staff and NAC Committee that advises the Board of Trustees. It is responsible for all the financial areas of the Trust whether external, such as our investment portfolio and actuarial reviews, or internal matters including grant allocation and budgeting.

The Committee is chaired by a trustee but an NAC lead is elected by NAC members and they play a key role on the Committee. Other NAC members volunteer for this Committee.

NAC members are:

  • Geoff Spink
  • Nick Dobrik
  • Craig Millward
  • Guy Tweedy
  • David Alexander

Current priority issues:

  • Working with investment consultants to implement de-risking strategy, as agreed with Diageo.
  • Monitoring our investment portfolio.
  • Updating our risk register to identify and mitigate against potential risks (e.g. testing cyber security).

Research Committee

This is a sub-committee of the Health & Wellbeing committee. It previews and prioritises research proposals, and makes recommendations to the H&W Committee. It also oversees any research commissioned by the Trust.

The co-chair of the Health and Wellbeing committee is automatically on the Research committee. Other NAC members volunteer for this committee or are chosen for their interest and expertise.

NAC members are:

  • Rowland Bareham
  • Carolyn Desforges
  • Graham Kelly

Current priority issues:

  • Supporting current projects: cardio-vascular risk project, upper limb study, continuing analysis of HNA data, and the care costs project.
  • Evaluating potential research proposals.
  • Identifying future areas of research.

Campaigns Team

The Campaigns Team helps secure additional resources for beneficiaries by undertaking targeted, structured and lawful campaigns.

It is not a formal sub-committee of the Trust’s Board of Trustees and can include beneficiaries who are not on the NAC, however it is accountable to both the Board of Trustees and the NAC.

NAC members are:

  • Nick Dobrik
  • Mikey Argy
  • Craig Millward
  • Guy Tweedy
  • Rowland Bareham

Current priority issues:

  • European Parliament liaison.
  • Informing UK MPs about the use of our health grant and the state of our health and about the lack of responsibility shown by both the German government and Grunenthal to UK thalidomiders.

Additional Roles

NAC Newsletter Editors - Carolyn Desforges

Trust Website Content Development Liaison - Helen Shore

Facebook Group Moderators - Graham Kelly

NAC Budget Holder - Guy Tweedy

Shaping The Future of The Trust

NAC members also play a key role in shaping the Trust’s future activities and plans.

NAC members are involved in the five year strategic planning process and also have a key role in the working groups set up to plan and implement new initiatives (such as the introduction of the new Exceptional Needs Fund) or important processes (such as planning for the recent Health Grant Renewal).

Contact NAC Members

If you have a question for any of the NAC members about their roles or you want to know what a particular committee is working on, please contact [email protected]

Alternatively you can email a NAC member directly using the form here.

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