We are the Thalidomide Trust
Welcome to the Thalidomide Trust, a registered charity, supporting a unique community of people who are living with disabilities as a result of their mothers taking the drug, thalidomide during the first three months of pregnancy.
Primarily marketed under the brand name Distaval, thalidomide was licenced in the UK for less than four years before it was withdrawn, so our beneficiaries are all a similar age and experience similar issues and challenges – but they are definitely not all the same.
The history bit
The Thalidomide Trust was set up in 1973 as a discretionary Trust, as part of the £20 million legal settlement between Distillers Company Ltd and 429 children with thalidomide-related disabilities. Back then, we were called the Thalidomide Children’s Trust.
Since then, we have accepted 541 people as beneficiaries. Sadly, 92 have passed away and today we’re supporting the 449 who remain.
In 1997 Diageo (formed by a merger between Grand Metropolitan and Guinness, who took over Distillers in 1990) inherited the thalidomide legacy and has made a long term financial commitment to support the Thalidomide Trust and our beneficiaries for the rest of their lives.
How we work
Our beneficiaries are at the heart of everything we do and they inform and shape the Trust’s activities.
One of the key ways they do this is through our National Advisory Council (NAC) - a group of 12 beneficiaries, elected by the whole beneficiary community - who provide ongoing advice to the staff and trustees on a wide range of issues.
Our work is overseen by a Board of 10 highly skilled trustees who bring a wealth of knowledge and experience to the charity.
What we do
The Thalidomide Trust administers two funds set up to support people affected by thalidomide:
Annual compensation payments– funded by Diageo
Health Grants– funded by the four UK Health & Social Care Departments
But we don’t just distribute grants, we do so much more:
- We offer a unique holistic health and wellbeing service to support beneficiaries to help them achieve the best possible health, independence and quality of life
- We provide emotional support and understanding
- We support beneficiaries who don’t have the capacity to make decisions to make sure their needs are met
- We provide support with finances and future planning
- We fund research projects to uncover the evidence that will shed more light on the needs of people living with thalidomide in the UK.
- We provide information and advice to professionals who work with beneficiaries to ensure they understand and respond to their needs
- We encourage and support peer to peer support through trained beneficiary volunteers
We work hard to make a tangible difference to the lives of our beneficiaries
This video was made with the support of Diageo to highlight the important work at the Trust and the difference it makes to the lives of our beneficiaries.