NIHR evaluation of the Thalidomide Health Grant
What is the issue?
Background
Thalidomide is a drug that was prescribed in the late 1950s and early 1960s to pregnant women to relieve nausea and vomiting in early pregnancy, among other conditions. In the 1960s, it was found to cause severe birth defects and was formally withdrawn in the UK. People born with thalidomide damage experience a range of disabilities, including damage to their limbs and internal organs, facial damage and sensory impairment, collectively referred to as ‘Thalidomide Embryopathy’ (TE).
Multiple thalidomide survivors are living with TE and are now at a stage in their lives where disability and ageing are intersecting. Due to the thalidomide damage, they are aging differently from their peers in the general population. They are experiencing new health problems and deterioration in their original impairments, alongside the accumulated disabling consequences of a life lived with their condition.
To help thalidomide survivors address their health and care needs, the UK government provides them with a Health Grant to enhance their health, well-being and quality of life. The Health Grant is administered by the Department of Health and Social Care in England, and is matched proportionately by the Scottish, Welsh and Northern Irish administrations, creating a UK-wide grant. In 2023, the Department of Health & Social Care and the Thalidomide Trust (the charity that administers the grant) entered into a new grant agreement, and it was agreed that after four years, there would be a review of this agreement, taking into account the number and needs of beneficiaries at that time. The Cabinet Office Complex Grants Advisory panel recommended that an independent evaluation of the Health Grant should be undertaken to review the current grant agreement.
Why is this important?
Currently, there are relatively few studies on the evolving experiences and health and care needs of thalidomide survivors as they are getting older. For thalidomide survivors and those with early-acquired disabilities, the normal aging process is compounded by existing impairments, and it is important to determine how the Health Grant can best accommodate their evolving needs. Further, the experiences thalidomide survivors have of aging with disabilities, and the responses they receive from health and care services, offer important lessons for supporting others with lifelong disabilities.
Our evaluation aims to explore how survivors’ needs are changing as they age and to provide information that will help ensure that the Health Grant is addressing them in the best way possible.
How are we helping?
The National Institute for Health and Care Research (NIHR) has awarded a grant to RAND Europe and The University of York to conduct an evaluation between October 2025 and March 2027 to answer the following questions:
- How are the health and wellbeing needs of thalidomide survivors evolving with age?
- How are thalidomide survivors currently using their Health Grant and how this might change in the future?
- What are the implications for the current and potential alternative distribution of the Health Grant?
The key objectives of our evaluation are to:
- Review the international literature on the health and wellbeing of thalidomide survivors.
- Evaluate the current health and wellbeing needs of the Health Grant beneficiaries through surveys and compare the results with data from 2015.
- Conduct biographical narrative interviews and focus groups with beneficiaries to understand the value of the Health Grant within their broader lived experiences.
- Conduct interviews and focus groups with experts and review literature to understand the distribution of the Health Grant and potential alternatives to it.
- Analyse and integrate quantitative and qualitative data to address the overall project’s research questions.
Project Team
Additional team members
- Maggie Bradford
- Jenny Bousfield (RAND Europe Associate)
Project team at the University of York
Liz Newbronner
Sarah Nettleton
Karl Atkin