Governance Review

The Thalidomide Trust has changed out of all recognition since it was set up in 1973.

Its role then was to distribute compensation money to us. It had an annual running budget of £30,000.

Today the Trust employs 24 people (up from 6 in 2014 when the current CEO took over) and has an annual running budget of £1.8 million.

Over the last 5 years, the Trust has become a doctor, social worker, financial planner, research organisation and disability advice bureau to the beneficiary community.

We have the Exceptional Needs Fund and the Private Health Scheme as well, which are available to some but not all of us.

The question we are asking is whether this is all sustainable in the medium to long term without impacting our annual allocations and health grants? Financial security is of paramount importance to many of us who rely on the Trust for our income. This becomes more and more critical each year.

We believe there should be a fully independently instructed governance and financial review of the Trust to ensure it is being run in compliance with the original settlement and the Trust Deed which means treating all beneficiaries with fairness, respect and transparency.

If you agree or would like to find out more please join us.