EDRIC welcomes ten year funding grant for English thalidomide survivors from UK government
LONDON, 20 December 2012: A European-wide organisation set up by a group of thalidomide survivors has welcomed the announcement by the UK government that an £80 million grant has been put aside for over 300 people affected in England.
The announcement confirms that the Department of Health will continue to fund ongoing health costs encountered by survivors as a result of their disabilities for the next ten years.
EDRIC, which runs the DysNet online network, was set up to bring together thalidomide groups and other organisations dealing with limb loss and deficiency across Europe.
Its chairman, Geoff Adams-Spink, a former BBC correspondent 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 are facing increasing costs to help us stay as healthy and independent as possible."
In the past year, the company responsible for developing the drug, Grünenthal, issued its first ever apology to survivors across the world whose mothers were given the drug in the 1950s and early 1960s to combat morning sickness. It was rejected by many as "too little, too late".
One woman in Australia, Lynnette Rowe, won a multi-million dollar settlement against Distillers, who sold the drug and its successor, Diageo.
The UK government agreed to three years of assistance in 2009 in a pilot funding scheme. It has also since expressed 'sincere regret' for the physical hardship and emotional difficulties faced by the families affected by thalidomide that was prescribed by the NHS.
The award will cover, for example, the cost of personal assistants, expensive adaptations to homes and vehicles and in many cases, wheelchairs, that enable a level of independence.
Mr Adams-Spink said, "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."
His organisation, EDRIC, has this year recruited 17 member groups of people living with limb deficiencies of various types and it intends to hold a conference in 2013 to gather together medical experts and patient groups to help improve patient care for people affected by congenital limb loss and amputations.
EDRIC member, the UK's Thalidomide Trust, which administers the funding, has welcomed the award that will be paid through an annual grant.
Thalidomide Trust Director, Martin Johnson said, "The announcement of a 10-year continuation of funding for UK thalidomiders on 20th December has been received with great appreciation by the UK group. 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. One person told me today, 'It is truly brilliant news and will help make life less stressful'."
One thalidomider, a professional artist, said, he would now be able to employ a part-time studio assistant and a home-carer to help him maintain independence, while another said it would enable them to continue with physiotherapy and the services of a naturopath, as well as make home improvements.
The average age is 50 so the grant means that England's 325 Thalidomide survivors, many of whose disabilities mean they cannot work, will receive financial assistance with their living and health needs for the next decade. Towards the end of this ten year period the Department of Health will review the funding arrangements once again.
The Scottish Government has pledged a separate £14.2m over the next ten years to help the 58 Thalidomide survivors in Scotland as they grow older. Proportionate funding contributions are also expected from the devolved health administrations in Northern Ireland and Wales in the next few days.
- EDRIC is the European Dysmelia Reference Information Centre.
- Dysmelia is the medical term for congenital limb deficency of all types.
- The DysNet website is at www.dysnet.org. Facebook: www.facebook.com/dysnet Twitter: @DysNet_org
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