Thalidomide campaigners have reacted with relief and joy after the chancellor, Rishi Sunak, pledged a “lifetime commitment” of funding to support survivors of the scandal.
Announcing the budget on Wednesday, Sunak said funding to support survivors of the thalidomide scandal was due to out in 2023, adding: “They deserve better than to have constant uncertainty about the future costs of their care. So not only will I extend this funding with an initial downpayment of around £40m, I am today announcing a lifetime commitment, guaranteeing funding for ever.”
Sunak also announced £19m to tackle domestic abuse in England and Wales, with funding for a network of “respite rooms” to support homeless women, and £10m to support veterans with mental health needs across the UK.
“We’re all so happy, relieved and grateful,” said Nick Dobrik, a thalidomide survivor who has long campaigned for the victims’ compensation funding to continue past 2023.
“These funds are vital to ensure that we have dignity and independence in old age. I’m 61 but feel like I’m in my 80s. Because of my disabilities, I’ve had to use my body in ways it wasn’t meant to be used. As a result, I have constant pain in my shoulders and my fingers, which means that finding gainful employment is very difficult.”
The Tory MP Simon Hoare, the vice-chair of the all-party parliamentary group for thalidomide, also welcomed the announcement. “I am incredibly grateful to Rishi for hearing our case and responding so warmly and fully. The relief that the thalidomide community feels in the knowledge that this is an issue resolved for life is incalculable.”
The thalidomide scandal was one of the world’s worst drug disasters. Caused by a medicine prescribed to pregnant women as a treatment for morning sickness in the late 1950s and early 1960s, about 10,000 babies worldwide were born with severe and life-changing deformities before the drug was withdrawn in 1961.
There are 312 remaining survivors in the UK. Their disabilities range from the mildly affected to those who have severely disfigured hands and feet, or have no arms or legs, and who are dependent on others in every aspect of daily living.
As this community ages – the average age is now 59 – – their mental and physical health needs were growing, said Deborah Jack, the chief executive of the Thalidomide Trust. “The worry that the surviving thalidomiders have had looming over them in recent years is that the funding would run out just as they were facing increased health issues as a direct result of their disabilities,” she said.
The trust has been working closely with the Department of Health and Social Care and the Treasury to get the funding extended. Data collected by the trust and submitted to the government shows that thalidomide survivors live with significantly worse physical and mental health than the general population of the same age and that there has been a marked deterioration in recent years.
The research found that in addition to poorer physical health, beneficiaries experienced a greater prevalence of poor mental health than the general population.
“As they age, it is becoming increasingly clear that the normal deterioration in health associated with ageing has a disproportionate impact on thalidomide survivors because of their disabilities,” said Jack.
“Many beneficiaries have been reliant on informal family care throughout their lives and in recent years this support has been disrupted by children leaving home, parents sadly becoming infirm and passing away, and relationships breaking down or partners becoming unwell and needing care themselves.
“As a result, an increasing number now require paid professional care.”