'It's been a long, hard road but we never ever gave up'

It's almost half a century since the thalidomide scandal broke, but in the intervening years as calls for the Government to make a full and public apology grew, a succession of MPs on both sides of the political divide remained unusually quiet.

Yesterday, that silence was finally broken, when Health Minister Mike O'Brien rose to address the House. It was the final few paragraphs of detailed statement as to how a 20m package of support would be allocated, which Guy Tweedy, one of the 466 surviving thalidomiders, had travelled to London to hear and, for once, the Harrogate businessman, who has been at the forefront of a long campaign for justice, wasn't disappointed.

Acknowledging, on behalf of the Government, the physical hardship and emotional difficulties which have been faced by all those affected by the medical disaster for the last 50 years, the MP for North Warwickshire also expressed sincere regret and deep sympathy for the injury and suffering endured by the victims and their families.

He might not have actually used the word sorry, but the sentiment was there and for Guy it marked the end of a battle which officially began seven years ago, but which many of those disabled by the drug have been fighting all their lives.

"All we wanted was for someone to hold their hands up and take some responsibility for what happened," he said, just moments after the long-awaited apology. He had already been inundated with calls of congratulations and, having become an unofficial spokesman for thalidomiders, Guy, along with fellow-campaigner Nick Dobrick, spent much of yesterday afternoon fielding requests for interviews. He was more than happy to oblige.

"It's been a long, hard road, but we never ever gave up and this statement was more than enough reward for all that hard work.

"Being in Parliament and hearing those words spoken aloud was just incredible. When we heard last month the Government was prepared to give 20m to help those disabled by thalidomide it was a fantastic Christmas present, but an apology was always part of our negotiations.

"The thalidomide scandal was so horrific that as time went on a lot of people wanted to forget about it, they wanted to put a distance between them and it. It was almost as if you don't mention it, it didn't happen. Those affected by it, didn't have that luxury and it is right that all those who allowed the drug to be licensed in this country stand up and be counted."

Yesterday was a day of celebration, but the success was also tinged with sadness. Since Guy began his fight in 2002 – 18 British thalidomiders have died.

"There are a lot of people who unfortunately never got to hear the Government's apology and that does make me sad," added Guy. "However, I hope it will mean something to their friends and relatives. Thalidomide didn't just affect the unborn child, it affected entire families."

The thalidomide scandal spanned the 1950s and 60s, when pregnant women were given the drug to help ease morning sickness. Also marketed as a mild sedative, the drug was used the world over, but led to many babies being born with deformed and stunted limbs. In the most severe cases, some also suffered brain damage and blindness.

Developed by a German pharmaceutical company, it is estimated the drug caused the death of between 10,000 and 100,000 babies in the womb and of the 10,000 babies born with deformities, half died before their first birthday.

It took some time for the birth defects to be linked to thalidomide and, as disability was still very much a taboo, a large number of children ended up in care and suffered the psychological scars of growing up in the "does he take sugar" generation.

The scandal looked like it was set to be covered up and overlooked, but a Sunday Times expose of the drug described as "chemical shrapnel" under the headline Our Thalidomide Children: A Cause of National Shame helped give the victims the attention they deserved.

Securing compensation has not been easy. Money was initially paid out in 1968, but the payments were taxed and it was that injustice which spurred Guy to take action. Devoting much of his spare time to the cause, firing off letters, lobbying politicians and Diageo, the company which marketed the drug, he has also taken on the plight of victims in other countries, organising a mass demonstration outside the German Embassy in London after it emerged German thalidomiders received just 4,000-a-year, compared to the 18,000 paid on average to British victims.

"If you score the severity of thalidomide on a scale of one to 10, I'm a one," he says, admitting that he feels like one of the lucky ones. "The effects of thalidomide have never held me back, but I felt someone had to fight for those most severely affected, those who couldn't fight for themselves.

"It costs 18,000 to buy a special wheelchair, it can cost up to 60,000 for an adapted car. Nothing is cheap and with many of us now entering our 40s or 50s, the problems of mobility are only likely to get worse. Like everyone else, our bodies suffer wear and tear.

"This has always been about justice, not entitlement, and certainly now I do think justice has been done."

The 20m will be managed by the Thalidomide Trust, which was set up in 1973 to administer the compensation package offered by Distillers.

During an initial three-year pilot scheme, the charity will explore how the health needs of thalidomiders can be met as they approach older age. If successful it is hoped the scheme will be extended.

"I've learnt to take one step at a time," says Guy.

"We got what we wanted and I can't think of any better organisation than the Thalidomide Trust to lead the way forward."

In May last year, scientists from the University of Aberdeen believed they had solved the 50-year puzzle of why thalidomide had caused such devastating damage. The team discovered a component of the drug prevents the growth of new blood vessels in developing embryos, leading to stunted limb growth.

Lead researcher Dr Neil Bergesson said the discovery could lead to a safer form of the drug, which is still used to treat leprosy and which last year was granted a licence by the European Commission to be marketed as a treatment for blood cancer.

The breakthrough was the final piece of a long and difficult jigsaw and with yesterday's apology, Guy can finally take a well-earned rest.

"I'm not sure what I will do with myself now," he said. "But I'm sure I'll find something to keep me occupied. There's always something worth fighting for."

Thalidomide factfile

n Developed in Germany in the 1950s, thalidomide was only withdrawn in 1961 after 2,000 babies were born with limb defects and other health problems.

n At the same time as the scandal was developing, it was discovered the drug had a radical effect on some of the painful symptoms of leprosy.

n In the 1970s, the drug's UK manufacturer, Distillers Biochemicals, paid out about 28m in compensation following a long-drawn out legal battle.

n In the 1980s scientists began to look again at the drug, which it was thought could be used as a possible treatment for prostate cancer.