About Us
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marketed under the brand name Distaval, thalidomide was licenced in the UK for less than four years before it was withdrawn, so our beneficiaries are all a similar age and experience similar issues and challenges – but they are definitely not all the same.
Our Vision
That each and every beneficiary of the Trust has access to the resources and support they need to live their best life for the longest time.
Our Ethos
We put the beneficiary community at the heart of everything we do. We are supportive, non-judgemental, inclusive and fair - and are committed to beneficiary empowerment and maintaining effective two-way communication with beneficiaries.
Our Strategic Goals
- To ensure the Trust’s income is secure, financial risk is effectively managed and adequate funding is available to meet the increasing needs of beneficiaries as they age.
- To apply the Trust’s resources strategically, effectively and equitably (in order to achieve our vision).
- To ensure that all beneficiaries have access to the best possible information, advice, advocacy, services and support – both within and outside the Trust – as they age and their physical and mental health needs increase.
- To ensure effective (two-way) sharing of knowledge and learning for the benefit of the beneficiary community and for wider public benefit.
- To ensure that the individual beneficiary’s needs remain paramount, even when third parties (families, carers, representatives) have a role in acting on their behalf.
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 543 people as beneficiaries. Sadly, 113 have passed away and today we’re supporting the 430 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.
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
For more detail on the Trust's activities you can read the quarterly Directors' Updates.
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.
