Pain Management Research

Introduction to the Thalidomide Trust

The sedative drug, thalidomide, was approved and licensed for distribution in the UK in April 1958, primarily under the brand name Distaval, and was withdrawn in December 1961 when it was found to have caused serious birth defects in babies born to women who ingested the drug during the first trimester of their pregnancy.

Thalidomide affected the development of the fetus in different ways and the resulting disabilities include damage to the upper and lower limbs, musculoskeletal problems, facial damage, sensory impairment (including vision and hearing) and damage to internal organs.  A small number of individuals were also born with cognitive impairments.

The Thalidomide Trust, a UK registered charity, was established in 1973 to provide assistance and support to individuals living with thalidomide damage. The majority of their beneficiaries are now in their early 60s and most are feeling the impact of using their bodies in ways they were never designed for. In addition, as they age, beneficiaries are experiencing a wide range of age-related health problems that are exacerbated by their original thalidomide damage.

The Thalidomide Trust meets these increasingly complex needs through the provision of financial support and a range of information, advice and advocacy services. To underpin this we gather evidence on the needs and experience of our beneficiaries and undertake more detailed research on topics that are of greatest relevance to them.

The Thalidomide Trust’s Vision …. is that each and every beneficiary of the Trust has access to the resources and support they need to live their best life for the longest time.

Thalidomide Damage and Pain

Evidence shows that our beneficiaries experience significantly worse physical and mental health than the general population of the same age.  Our data show that there is a higher prevalence of all those categories of ill health measured by the Health Survey for England (HSE) compared with non-thalidomide age matched population.  Pain is the health issue which is most reported by beneficiaries - with 91% reporting pain in four different sites, frequently experienced on a daily basis. This seriously impacts their quality of life and ability to remain fully independent and suggests that beneficiaries are enduring significant discomfort in multiple locations of their body every day.

There are a number of barriers to beneficiaries seeking help and treatment for their pain, including a reluctance to take tablets due to their formative experience with thalidomide, poor experiences of multiple interventions and surgeries as children, and difficult experiences with health care professionals who do not understand their unique and complex needs. Our experience indicates that these barriers can prevent beneficiaries from accessing standard NHS pain management services and that standard pain treatment pathways are often inappropriate for the beneficiary group.

For this unique beneficiary group with such a significant extent and experience of pain the lack of an effective bespoke approach to pain management is a significant gap and the need to develop one is paramount.

Aims of the study

• To define the experience of pain suffered by beneficiaries.
• To identify and describe best practice approaches to pain management and their likely efficacy for the beneficiary group.
• To define and describe an effective pain management pathway that reflects and will meet the unique needs of beneficiaries of the Thalidomide Trust.

Overall design - Scope and Stages of Project

The scope of this project includes the following stages:

1. Undertake an analysis of the extent and characteristics of pain in the beneficiary group
   

   Using existing quantitative data gathered by the Trust.
   In reviewing these data, we would expect the researchers to identify any information gaps and make recommendations to address these gaps.

2. An investigation of the beneficiary experience of pain and managing pain.

   What interventions are used, or tried in the past, and the nature, extent, and effectiveness of these. To include an understanding of the experience of accessing NHS or private pain interventions, from GP to pain clinics.

   This requires new primary research with the beneficiary group to provide an in-depth exploration of how beneficiaries currently experience and manage their pain. The outcome would be an analysis of beneficiary experience and requirements that can be mapped against the analysis at stage 3.

3. An investigation of models of pain management, the current pain interventions/ services available
   

   On the NHS and privately - for example surgical, pharmaceutical, cognitive and lifestyle approaches. This will include evidence of their effectiveness, availability, waiting lists etc. and identifying best practice.

   The outcome would be a review of current pain management pathways and interventions available in the NHS and private sectors, as well as emerging and new approaches to managing pain and should include factors such as costs of models, the evidence base of their effectiveness, their likely availability and accessibility and their patient acceptability.

4. Gap analysis of the investigations at stages 2 and 3 and the development of recommendations to the Trust to address the gaps and define a pathway to meet beneficiary needs.

   Recommendations could include:

   • Services/programmes/advice delivered by the Trust.
   • Specialist clinical services commissioned by the Trust.
   • Recommendations to clinicians (e.g. GPs/nurses) available from Trust website.

5. Timescales

   We expect the research to be completed within 12 months of the agreed start date.

6. Further Information

   Any questions or requests for further information should be directed to Katy Sagoe, Director of Health & Wellbeing at [email protected]

   The research project will be overseen and supported by the Research Committee of the Thalidomide Trust, which includes beneficiary representatives.

   Read more information about the Thalidomide Trust