Survivors of thalidomide in Scotland are to receive lifelong financial support for their health and independent living needs, the Scottish government announced today.

Lifetime funding from the government for the 50 known survivors of thalidomide in Scotland, most of whom are now in their 60s, is to be made available from the Scottish government and regularly reviewed to ensure it is meeting their needs.

Thalidomide was prescribed to pregnant women to ease symptoms of morning sickness and insomnia before it was discovered to lead to babies born with life-altering limb impairements and health complications.

The announcement comes as a previous Scottish government 10-year funding scheme, the Health Grant, draws to a close in 2023.

As well as congenital disabilities, many survivors experience secondary health complications and require daily adaptations and support. Jean, a survivor from Central Scotland who was born with damage to all four of her limbs as a result of thalidomide said:

“This is such great news. The Health Grant from the Scottish government has really helped me over the years - assisting me with adapting and extending parts of my house to help me maintain my independence.”

Jean, who is now 61, explained that all most rooms in her home needed adaptations. She said:

“My kitchen, for example, is now completely accessible from my wheelchair (shame it hasn’t improved my cooking!). The foldaway oven-door allows me to lift food onto a shelf which pulls out, enabling me to lift hot food safely from the oven. Other areas in the kitchen that have been made accessible are a low-level hob, a sink with taps at the front, a low-level freezer and drawers to access my fridge.

“My bathroom has also been adapted by having a smaller bath installed and a bespoke shelf-area which I can transfer onto to dress and undress and which allows me to get safely in and out of the bath.

“My bathroom also has a special toilet with a wash/dry function and an accessible wash basin.”

Prescribed to expectant mothers from 1958 to 1961, thalidomide was originally purported to be a valid treatment for morning sickness in the UK by Distillers Biochemicals from Distillers Company Ltd. After thousands of babies were born with disabilities, thalidomide was withdrawn.

In1973, the Thalidomide Trust was established as part of a £20m legal settlement for the 429 children in the UK with thalidomide-related disabilities at the time.

In 2013, an agreement was made to grant survivors £14.2m over 10 years to support their health and living costs.

Separately, following a three-year pilot of the grant in 2010, the developed into the 10-year commitment of funding from the government via the Thalidomide Trust.

Jean has also benefited from this previous funding to keep fit, by having a gym in her garden and one-to-one personal trainer sessions. This helps her with the chronic pain and body stiffness she lives with due to thalidomide.

The Thalidomide Trust currently supports 441 people, with around 50 known in Scotland. Deborah Jack, Executive Director of the Thalidomide Trust added:

“This is fantastic and very welcome news. Sadly, as our beneficiaries age they are experiencing multiple health problems, in addition to their original thalidomide damage, and the costs of meeting their complex needs are significant. Many of them have been really anxious about the prospect of this much-needed funding coming to an end.”

The Scottish government receives annual funding from the UK government from which it then allocates locally. The Scottish government says the extended funding can be used to meet individual needs, including adaptations for specialist equipment, homes and vehicles and assistance with day-to-day tasks.

Deborah Jack said:

“We are really pleased that the Scottish government has recognised this by committing to lifetime financial support and also agreeing to review the level of funding regularly to ensure it is meeting their changing needs.”

As of January 2022, Humza Yousaf confirmed £11.512m of the originally agreed £14.2m has been issued and the projected, set to be £13.15m in total by the end of this year. In today’s announcement, Mr Yousaf said:

“This funding is used to give thalidomide survivors as much assistance as they need to maintain their independence. It has been a vital support in helping people adapt their homes and manage their pain.

“I hope this lifelong commitment to continue this support will reassure recipients and help them deal with any challenges they face.”

Kevin Stewart, Minister for Mental Wellbeing and Social Care, confirmed earlier this year, in March 2022, that the government was continuing to discuss future funding with the Thalidomide Trust.

Jean added to her response to today's news: “Knowing this funding is going to continue indefinitely has given me, and many other Thalidomiders living in Scotland, such peace of mind.”

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