Core values

The drug thalidomide, which was prescribed to pregnant women in the late 1950s and early 1960s, caused serious damage to unborn babies. 

 

This included shortening and absence of limbs, malformation of hands and digits, damage to ears and eyes, sensory impairment, facial disfigurement and palsy, and damage to the brain, internal organs and skeletal structure. 

 

The Thalidomide Trust was established in 1973 as part of a legal settlement between Distillers Company Ltd and the affected families. The charity supports 468 beneficiaries, who are aged from 52 to 59. It provides information, advice and advocacy with a focus on maintaining independence and quality of life through improved health and wellbeing outcomes  See the website here. 

 

Most people affected by thalidomide experience musculoskeletal problems, particularly pain or loss of movement in their backs, shoulders and hands.People with short arms often overuse their bodies through moving in abnormal ways to compensate for their reduced reach and many use their legs for everyday tasks. 

 

As a result, they develop early arthritis and experience excessive muscle spasm and weakness between the shoulder blades and in the back. Problems with falls or balance are common and a fear of falling affects daily life, causing some people to give up prosthetic legs and become wheelchair-dependent while some  become housebound. For individuals who have been fiercely independent throughout their lives, the resulting loss of freedom can have profound practical and emotional impacts.

 

Our beneficiaries say that a combination of exercises and stretching under the guidance of a supportive and confident physiotherapist can help reduce pain, maintain mobility and improve balance.

 

One beneficiary, Simone, says: ‘With my physio I have developed a stretching routine lasting about 45 minutes. I focus on my upper and lower spine, shoulders, neck and improving my core strength. which definitely helps with reducing pain levels and also enhances balance and stability. I [also] have a fortnightly deep tissue massage.’ 

 

We are delighted to be working with the CSP to develop support and information for beneficiaries and physios to help them work together. Katy Sagoe is director of health and wellbeing, the Thalidomide Trust.