UK Research

Clinical Research

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.

Read a summary of the research findings here: Beneficiary summary
Read the full report here: H&W Survey 2015 (May 2016)

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.

Read a summary of the research findings here: Firefly Summary (March 15)
Read the full report here: Firefly report March 2015

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