Peripheral Nerve Dysfunction in Middle-Aged Subjects Born with Thalidomide Embryopathy
The Thalidomide Trust commissioned a pilot study to evaluate the presence of paraesthesia (pins and needles), numbness and pain (peripheral neuropathy) in adults with thalidomide embryopathy.
To read a short lay summary of the important implications of the study press here: What are the important implications of the study?
To read the full published paper press here: Peripheral Nerve Dysfunction in Middle-Aged Subjects Born with Thalidomide Embryopathy
Health, Wellbeing and Quality of Life Research
Falls & Balance
For some time now there has been anecdotal evidence that, as beneficiaries grow older, falls and/or balance problems are becoming more common, and the associated fear of falling is affecting peoples’ daily lives. Research was carried out with beneficiaries in 2016 to discuss the main problems they were experiencing. To read the full report click here: Falls and Balance Problems Briefing Paper FINAL
Bladder and Bowel
One of the striking findings from the 2015 Health and Wellbeing survey was the number of beneficiaries who reported having bladder and/or bowel problems - 72 (20%) had bladder or continence problems and 98 (28%) had bowel or digestive problems. Research was carried out with beneficiaries in 2016 to find the main problems they were experiencing. To read the full report of these findings click here: Bladder & Bowel Incontinence Briefing Paper FINAL
Healthcare Services – Access, Quality and Improving the Care Pathway for Thalidomide Survivors
The work of the Health & Wellbeing team and the evaluation of the Health Grant have clearly shown that routine NHS services often struggle to provide appropriate diagnosis, treatment and care for Thalidomide survivors. This was confirmed by the Health and Wellbeing survey, which found that (in the past five years) nearly two thirds of beneficiaries had experienced one or more problems with the quality of and/or access to health services. Half perceived a lack of knowledge or understanding of Thalidomide damage amongst healthcare practitioners and a third felt they lacked knowledge or understanding of their particular impairments. The other major area of concern was difficulties or delays in seeing a healthcare professional with the necessary experience and knowledge.
To read the full report click here: Access to Healthcare Services 2017 Report
The Legacy of Thalidomide
A multidisciplinary meeting was held at the University of York in September 2016 and was attended by beneficiaries, historians, scientists, clinicians, and social scientists to explore what lessons can be learned from the history and use of the drug, its impact and ongoing consequences today; and how this knowledge can benefit thalidomide survivors and others with rare impairments.
Read a brief report of the meeting here: "The legacy of Thalidomide" - A Brief Report
Health and Wellbeing
In 2015 the Thalidomide Trust invited all beneficiaries to take part in a survey to find out about their current health and wellbeing, any problems they are currently facing and any (other) challenges they expect in the future. A massive three-quarters (75%) of beneficiaries replied to the survey. This means we can be confident the survey gives an accurate picture of their current situation and future anxieties. Overall, we now have a detailed picture of the challenges involved in growing older with Thalidomide damage.
Health, Quality of Life and Employment among Thalidomide-affected People
The Trust commissioned research in 2014, which was undertaken by Firefly. There were two parts to the research – a survey of health related quality of life and employment situations of all thalidomide-affected people in the UK; and, in depth telephone interviews with 40 individuals.
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.
Read the 3rd year report (2013) here: Health Grant Evaluation (July 2013)
Read the 2nd year report (2012) here: Health Grant Evaluation (July 2012)
Read the 1st year report (2011) here: Health Grant Evaluation (June 2011)
Cost of living with Thalidomide Research
Securing Our Future: the disability and health costs of UK thalidomide-affected people
This study of 80 thalidomide-affected people living in the UK identifies the health problems they were experiencing, the implications for daily living and the costs associated with meeting their increased health needs. It reveals a significant gap in the funding available to meet their needs.
Read the full report here: Securing our Future report
Loss of Earnings and Pensions among UK Thalidomide Survivors
The beneficiaries of the UK Thalidomide Trust, now in their 50s, are experiencing consequential Thalidomide damage that is having an increasingly severe effect on their working lives, incomes and future pensions.
This report provides detailed evidence of the extensive challenges experienced by beneficiaries of the UK Thalidomide Trust in sustaining paid work and careers as they experience rapidly increasing health problems; and of the earnings and pensions entitlements they have consequently lost or foregone.
Read the Executive Summary here: executive-summary-loe-final-november-2016
Read the full report here: loss-of-earnings-report-final-november-2016
The Thalidomide Trust are interested in commissioning and funding a study to explore how Behavioural Activation can be used to improve the mental health of beneficiaries with mild to moderate depression. In particular we are interested in developing a peer support approach. The study must be supported by an approved academic institution in the UK and experience of the thalidomide survivor group is essential. Expressions of interest and study proposals should be submitted to email@example.com by 24 February 2018