Evaluation of the Thalidomide Health Grant
Background
In the late 1950s and early 1960s the drug Thalidomide was given to thousands of pregnant women across the world to relieve morning sickness. The drug caused severe birth defects including missing or short limbs, sensory impairments, and damage to internal organs. The combination of birth defects caused by exposure to the drug are usually collectively referred to as ‘Thalidomide Embryopathy’ (TE). However, Thalidomide is not just a historical tragedy, it is a contemporary disability issue. Across the world more than 5,000 thalidomide survivors are still living with TE, and they are now at a stage in their lives where disability and ageing are intersecting.
Whilst TE is regarded as a non-progressive condition, it is not static. As they age, thalidomide survivors are experiencing new Thalidomide-related health problems and deterioration in their original impairments alongside the accumulated disabling consequences of a life lived with a rare condition. Shifting impairment is leading to efforts to preserve function and the need to rethink independence, which in turn may have implications for mental health and wellbeing.
The Health Grant
In March 2010 the English Department of Health confirmed it was to make a pilot Health Grant of £20 million to Thalidomide survivors in England. This sum was matched proportionately by the Scottish, Welsh and Northern Ireland administrations, creating a UK wide grant of £26.4 million. The grant, which was the result of many years of campaigning by thalidomide survivors, was intended to help them address the increasing health and health-related needs they are experiencing as they grow older with thalidomide damage. At the end of the pilot, the grant was renewed for ten years. Usually at the end of a 10-year grant, the Cabinet Office requires an evaluation to be carried out before it can be renewed, but in 2021, the Chancellor of the Exchequer made a public commitment to lifetime Health Grant funding. In 2023, the Department of Health & Social Care and the Thalidomide Trust (the charity which administers the grant) entered into a new grant agreement, and it was agreed that after four years there would be a review of the 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 feed into this review. So the DHSC asked the National Institute for Health and Care Research (NIHR) to commission independent researchers to carry out the evaluation on their behalf. A joint team from RAND Europe and the University of York are carrying out the evaluation. The overall lead for the research is Dr Jenny Bousfield from RAND Europe. Dr Liz Newbronner from the University of York is Co-Co-principal investigator and Professor Karl Atkin is overseeing the work at York.
Project aims and methods
The main aims of the evaluation are to:
- Provide an up-to-date picture of the changing health and wellbeing needs of thalidomide survivors
- Explore how thalidomide survivors are using their grants to meet current needs and plan for the future
- Examine whether these changing needs have implications for the level and distribution of the grant.
Following ethical approval, we plan to use several different approaches to understand how the Health Grant is working:
- Interviews with key staff at the Thalidomide Trust to understand how the grant is administered and explore how thalidomide survivors are supported to use their grants
- Reviewing existing UK and international literature about the health and wellbeing of thalidomide survivors
- Analysis of anonymised information held by the Thalidomide Trust about the health and wellbeing of Thalidomide survivors, which they have permission to share
- Conduct a short health and wellbeing survey of all UK thalidomide survivors
- Talk to around 50 thalidomide survivors in discussion groups and interviews about how they have used their grants and the impact on their health and wellbeing. We will also seek peoples’ views about the level of the grant and its distribution
- Interviews with Trust staff and other thalidomide organisations, academics, clinicians, policy representatives involved in supporting thalidomide survivors in the UK and internationally
We have prepared a Q&A sheet which we hope will answer many of the questions people from the thalidomide community may have about the evaluation:
, 54kb)We want the voice of thalidomide survivors to be central to the evaluation. Our Expert by Experience Lead is a thalidomide survivor and there will be three thalidomide survivors on the Research Advisory Group. We are also in the process of setting up an Experts by Experience Panel of six thalidomide survivors, who will help shape how the research is carried out. If you are interested in joining the panel, please read the role description for more information about the role of panel members and how to apply.
Timeline and contact details
The project commenced in October 2024 and is due to be completed in February 2027. If you would like further information on the project, please feel free to contact Liz Newbronner or Karl Atkin.
