Securing Our Future: The Disability And Health Costs Of UK Thalidomide-affected People

Aims

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.

What was found

Thalidomiders are now experiencing premature, excessive, painful and debilitating wear and tear on their bodies after 50 years of having to use them in extraordinary ways to compensate for missing, shortened or malformed limbs and organs – damage which has been compounded by their inability to invest in their special needs through lack of funds.

The Securing our Future (SOF) study, initiated and managed by thalidomiders, collected data on and investigated the financial costs of living with disabilities caused by thalidomide, over and above the general costs of living.

Over a 2-year period (2010-2012) 80 of the 430 or so UK-born thalidomiders recorded their costs of coping with their thalidomide disability.

The headline finding is that an average thalidomider spends £40,594 per annum on needs directly attributable to thalidomide disabilities, and that for many, there is still a gap in their ability to invest in their real needs.

Never before have the true financial costs of thalidomide been calculated – costs that thalidomiders live with every day due to the damage caused 50 years ago. The evidence from this study is that the ever-increasing cost of trying to stay mobile, independent and healthy, combined in many cases with the cost of reduced family income, has resulted in the financial cost of thalidomide-related disabilities increasing year on year.

View the full published report here:

Securing our Future: the disability and health costs of UK thalidomide-affected people

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