Evaluation Of The Health Grant To Thalidomide-Impaired People
The Trust commissioned Firefly in 2010 to undertake a three year study to provide evidence of the impact of the Health Grant on the health and well-being of individual thalidomide-affected people in the U.K.
The evaluation began in May 2010 and ran for three years until summer 2013. Its main aims were to:
1) Provide evidence of the impact of the grant on the health and well-being of individual thalidomiders
2) Assess how the provision of the Health Grant has (or may have) enabled individual thalidomiders to reduce or avoid predicted future health needs
3) Bring together the learning from the evaluation to support a decision on whether and how to create a permanent scheme after the current three-year pilot has ended
4) Examine the effectiveness of working through a national organisation to meet the needs of other geographically dispersed groups with highly specialised needs
What was found
There are two main parts to the evaluation – a review of the operation of the Health Grant scheme which took place in the first and last years of the evaluation and an in-depth study of the experiences of 60 thalidomide-impaired people (the ‘study group') of using their Health Grants, which ran across all three years.
The key conclusions are summarised:
Over the three years of the Health Grant evaluation a number of clear themes have emerged. The final year of the evaluation has confirmed and developed them, as well as highlighting wider issues about the potential of the Health Grant ‘model’ for addressing the health needs of other groups of people with rare conditions or specialist needs.
Thalidomide-impaired people are experiencing deterioration in their health. In the final year of the evaluation, concerns about further deterioration and new or additional health problems were again evident.
For many people the things they had been able to do, or the lifestyle changes they had been able to make, as a result of the Health Grant, were helping to either slow down this deterioration or at least enable people to manage it. People felt the impact of the Health Grant had been overwhelmingly positive, even “life changing”.
View the full published reports for all 3 years here: