Survivors say government’s £80m grant ‘is huge relief to thalidomiders’

Thalidomide survivors have welcomed a 10-year, £80 million government grant that will help fund the increasing support needs they face as they grow older.

The grant will enable additional financial support for England’s 325 surviving “thalidomiders”, who have impairments caused by the drug being taken by their mothers during pregnancy between 1958 and 1961.

It will pay for the cost of support such as personal assistants, adaptations to homes and vehicles, and wheelchairs, and will be administered by the Thalidomide Trust, which manages the compensation paid by the firm that marketed thalidomide in the UK.

EDRIC, a Europe-wide group set up by thalidomide survivors – which runs the DysNet online community on dealing with limb loss and deficiency – welcomed the announcement.

Geoff Adams-Spink, EDRIC’s chair, said: “This news comes as a huge relief to myself and the several hundred other survivors in England who have to cope every day with the damage caused to us by thalidomide.

“It’s a sad fact that many affected have not lived to see this day but those who have are in our sixth decade [and] are facing increasing costs to help us stay as healthy and independent as possible.”

He added: “The effects of thalidomide aren’t just what you can see such as shortened arms or legs, but there is also often damage to internal organs, vision and hearing and, as we age, an increasing loss of the mobility we do have.”

The funding was first piloted in 2010 with a three-year grant of £20 million. Weeks after that grant was announced, the government finally expressed its “sincere regret and deep sympathy” for the “injury and suffering” caused by thalidomide.

Norman Lamb, the Liberal Democrat care services minister, this week repeated that expression of “deep sympathy”.

He added: “This deal represents our clear acknowledgment that thalidomiders should be supported and helped to live as independent lives as possible, and we hope that this grant will aid that cause and provide an element of long term financial security.”

The new funding only affects those survivors living in England.  Scotland has announced a 10-year grant of £14.2 million to help its 58 known thalidomiders, while Wales and Northern Ireland are expected to make announcements in the next few days.

The Department of Health said the Thalidomide Trust would produce an annual report detailing how the money was being used, including how it was “reducing loss of independence and preventing or delaying further damage to health, mobility, and well-being”.

Martin Johnson, director of the trust, said: “We are receiving many emails from beneficiaries saying how this will now enable them to plan various ways of developing their personal support to remain independent.

“I believe the news will help many to relax and get on with their lives without the anxiety that has been plaguing them up until now.”

News provided by John Pring at http://www.disabilitynewsservice.com

Survivors seek online route to spreading their lived experience

A group of thalidomide survivors from across Europe are hoping to share the knowledge they have gained from half a century of living with their impairments through a new online community.

They are hoping their website will connect people affected by congenital limb differences (dysmelia) and ensure the knowledge they have gained is “preserved and built upon”.

They also hope to share their experiences of leading independent lives with younger people with dysmelia across the world.

The Dysnet website was set up by the European Dysmelia Reference Information Centre (EDRIC), which was itself set up three years ago by the UK’s Thalidomide Trust and Sweden’s thalidomide organisation FfdN.

Thalidomide was finally withdrawn from circulation 50 years ago, following mounting evidence that the drug caused birth defects, particularly shortened arms and legs.

EDRIC’s four board members are all thalidomide survivors, from the UK, Germany and Sweden, and they are now hoping to expand the board to include people with other forms of dysmelia.

The site will provide support and information, but also act as an archive of research and historical documents, encouraging contributions from across the world.

As well as the website, Dysnet has launched an online community on the RareConnect network, which connects people across the world with rare health conditions, and will be available in English, French, German, Italian and Spanish.

EDRIC also wants Dysnet to draw together the many small support groups for people with dysmelia that are scattered around the globe.

EDRIC is chaired by Geoff Adams-Spink, a thalidomide survivor, the BBC’s former age and disability correspondent and now a disability equality consultant.

He said he was expecting conversations through the site about how to access the right kind of medical expertise, advice on daily living, such as car and home adaptations, and pain management, issues that will be shared by people with dysmelia across the world.

One of the main reasons for setting the site up was to address health inequalities.

He said: “It is such a rare condition that surgeons and physios just do not know how to treat us.”

The hope is that Dysnet will build up a network of experts and eventually organise conferences and even raise funds for research.

Adams-Spink said they hoped to prevent people with dysmelia needing to “reinvent the wheel” when seeking a solution, as it was likely that “some group somewhere else has already solved that problem”.

He said: “As a critical mass, thalidomide people are around 50. We have had a few milestones. We think for younger people we can provide a bit of guidance and as we age we will be learning ourselves as well. The more of us there are the better.”

Another aim of Dysnet, eventually, is to establish a worldwide register of people with dysmelia. There are an estimated 30,000 in the European Union, but many countries do not keep their own registers of birth defects.

A global register could help identify clusters of people with impairments linked to environmental factors, such as in Fallujah, Iraq, as a result of the US assault in 2004, or survivors of the use of Agent Orange in Vietnam, or of the Chernobyl nuclear disaster.

There has already been contact from campaigners in Sicily concerned about a cluster of babies born with impairments possibly caused by environmental factors.

Adams-Spink said: “One of the things we want to do is shed some light into these areas.”

News provided by John Pring at www.disabilitynewsservice.com