Gary Skyner and Freddie Astbury had waited a long time for the meeting. The man they had arranged to see, Chris Matijasevic, was the managing director of the UK subsidiary of Grünenthal, a German company that is little known in this country to those outside the pharmaceutical industry.

Skyner and Astbury, however, had been aware of it since their earliest days. The firm had had a devastating effect on their lives before they were even born.

In the late 1950s, Grünenthal launched the drug thalidomide in 46 countries around the world. Marketed as a cure for morning sickness, it produced terrible deformities in the children of some mothers who had taken it while pregnant. Skyner was born with a short left arm and no thumbs, Astbury with neither arms nor legs.

In the thalidomide rights movement, Skyner and Astbury are known for their uncompromising attitude. “Let me give you an analogy,” said Skyner. “We’re like armed robbers. We smash the place up, put everyone in the vaults, and tell the manager that we’re going to make a cup of tea while he tries to remember the combination for the safe.”

The pair had told Matijasevic beforehand that they intended to secure adequate compensation from his company. They wanted a payment to each of the 3,500 surviving victims around the world of £1m, spread over 10 years and index-linked.

Perhaps their reputation had preceded them. Ten days before the meeting was due to take place, in September 2006, they were told that it had been cancelled. What’s more, Matijasevic said “urgent matters” meant he would not be available for meetings “for the foreseeable future”.

Rebuffed by Grünenthal, the campaigners tried a new tack. Jonathan Stone, a lawyer who is a special adviser to the Thalidomide Trust, sought a meeting with the German ambassador to discuss the firm’s negative attitude towards British “thalidomiders”.

The meeting at the embassy was cordial, and the ambassador, Wolfgang Ischinger, seemed sympathetic. However, Stone’s subsequent communications were answered by a less senior diplomat, Armin Jungbluth.

His attitude was perhaps best summed up in an e-mail he accidentally sent to Stone. It concerned one of Stone’s earlier messages, and was intended for one of Jungbluth’s colleagues. It read: “Herbert, what should I do about this? For my own part, I would prefer to ignore it. I don’t think that it is taking us anywhere.”

The victims of thalidomide have grown used to being fobbed off, both by the companies that promoted the drug and governments that accepted without question the firms’ claims that they had not known of its devastating effects. Even the otherwise irrepressible Skyner, who is an occasional stand-up comic, can sometimes sound fatalistic about their plight.

“This is bigger than 9/11 [in terms of the numbers affected], but it’s not sexy because we weren’t all killed or maimed on the same day,” he said. “And now we’re older and uglier, people don’t want to know.”

The victims are approaching 50th birthdays that many thought they would never see. Yet, incredibly, it is still difficult to predict when they will win the battle to secure adequate compensation for their “man-made” condition. THALIDOMIDE was first produced by accident, in 1953, by German chemists trying to create an antihistamine. It did not work in that way, but was found to be an effective tranquilliser with no apparent harmful side effects. It went on the market in Germany in 1957.

Demand proved strong and the drug was used to treat many anxiety conditions, including morning sickness. It was launched in Britain the following year.

Then the problems began to emerge. With no central authority in Germany responsible for assessing doctors’ concerns, they were obliged to take them to the manufacturer. Grünenthal received some 1,500 such reports, but consistently denied any link to their product.

In 1961, however, an Australian obstetrician, William McBride, proved the link between deformities in children and thalidomide. He informed the drug’s distributor in Australia but the drug was not banned there until 1962.

Campaigners estimate that thalidomide caused the deaths of up to 100,000 babies in the womb. Of the 10,000 born alive, nearly half died in their first year.

Those who survived were left with a range of disabilities: typically these were short limbs, with flipper-like arms and toes sprouting from the hips, although some were also left deaf and blind. The majority of cases were in Germany, but in Britain about 490 victims were eventually identified.

Attempts in the 1960s by the thalidomiders’ families to win compensation were fought fiercely by the parties involved, often aided by the authorities. In Britain, the shamefully low compensation offered to victims by the drug’s UK distributor, Distillers, caused a national outcry after it became the subject of a Sunday Times campaign (see panel). Eventually, a better settlement was reached.

Today the problem is that all previous settlements assumed the thalidomiders would not have long lives. Many, though, are still going strong in middle age, and their principal carers – their parents – are either dying or becoming too old to care for them.

Sadie Galvin is the mother of Dominic, 49, who was born with deformed hands and clubbed ankles. On that basis alone, Dominic’s father rejected him and left Sadie.

Dominic’s problems were not restricted to his limbs: he also has massive brain damage. “His IQ is high but without drugs he has more than 100 fits a day,” said his mother. “It’s a 24-hour-a-day job. I have to bathe him, shave him, dress him, feed him.”

Is she worried about what will happen to him? “I have got this far with God’s help. I will make it. I brought him into the world and hopefully I will see him out of it.”

Other thalidomiders are experiencing the devastating effects on the body of compensating for their birth defects. If you’ve spent decades opening bottles with your teeth instead of your hands, you’re bound to need a lot of dentistry. Similarly, if you have hands growing out of your shoulders, then you will have placed extraordinary strain on your torso by stretching and twisting to reach things.

“We are falling to bits in every direction,” said one thalidomider. IN THE early years, the best interests of thalidomiders were attended to by able-bodied supporters whose efforts were channelled through the Thalidomide Children’s Trust, now the Thalidomide Trust. In recent years, however, the grown-up victims have started to fight their own battles.

After all, many thalidomiders have become prominent success stories. They include Geoff Adams-Spinks, a BBC correspondent and Matt Fraser, an actor.

The best known of the thalidomider activists are Nick Dobrik and Guy Tweedy. By their own account, both are relatively able-bodied. Each one runs his own business – Dobrik in jewellery and Tweedy in property – and admit that until recently they were largely unaware of the concerns of fellow sufferers. Indeed, Dobrik says he had not even met a fellow thalidomider until 2002.

In that year Gordon Brown, as chancellor, started to tax the benefits payable through the Thalidomide Trust. Dobrik and Tweedy were outraged.

They started a campaign and eventually managed to reverse the decision.

The pair then opened fresh negotiations with Diageo, which had acquired Distillers, to secure an increase in the funds available to British victims, which had been gravely reduced by inflation. Again, they managed to pull it off, securing an additional £160m over 30 years, or about £10,000 per person a year.

Having taken on and beaten the Treasury and Diageo, the thalidomiders found they had become skilled campaigners. Indeed, both Dobrik and Tweedy hope to become MPs, albeit for different parties.

As their next move they decided to tackle Grünenthal, which is currently valued at £2 billion but has paid nothing to British thalidomiders.

“We don’t want to offend other disabled people,” said Dobrik. “But we’re not like them. We are more like the victims of a car crash. Our problems were not caused by an act of God; they’re man-made. And we should be compensated accordingly.”

In carrying out their research, the British thalidomiders became aware that their “brothers and sisters” overseas were worse off than even they were.

In the UK, the average amount paid in support to victims is £18,000 a year. The payment is linked to the severity of disability. In Germany, where there are more than five times as many thalidomiders, the maximum annual payment is £4,000.

In Italy, Spain and Austria, where the numbers of victims are unknown, there is no financial compensation at all. Indeed, it is only in the past year that the Spanish government has even acknowledged that thalidomide was used between 1959 and 1961.

The British thalidomiders decided to make their campaign international. IN January, Tweedy and Dobrik went to speak to German thalidomiders who, despite their larger numbers, have felt demoralised because they believed an out-of-court settlement made with Grünenthal in the 1960s forbade them from complaining or campaigning.

The effect of Tweedy’s and Dobrik’s visit on the German thalidomiders was electrifying, according to two Germans who witnessed it.

Claudia Schmidt-Hertevich has hands growing out of her shoulders; her husband Udo has feet where most people have thighs.

“Nick and Guy gave hope to a thousand people,” she said. “They gave these people a real hope for independence and dignity.”

It had been only late last year that Grünenthal finally abandoned the policy of refusing all contact with thalidomiders and their representatives.

A meeting was held in December after which the chief executive, Sebastian Wirtz – grandson of the man who ran Grünenthal when the drug was launched – said he was “deeply touched by the thalidomide tragedy”. No offers of financial help were forthcoming, though.

In an attempt to change that situation, the campaigners are taking their protests to the street.

Thalidomiders from around the world are flying in for a rally outside the German embassy in London on April 3. The protest, which marks the 50th anniversary of the drug’s launch in this country, promises to be combustible.

As Dobrik hinted last week, perhaps with an eye on generating publicity for the march, passions might boil over with unpredictable results.

The authorities have been warned: the thalidomiders will continue to fight hard for justice.

The Sunday Times campaign for the victims

— The parents of British thalidomiders were forced to fight a protracted court battle for compensation. Eventually, in the late 1960s a deal was negotiated with Distillers, the UK distributor, which gave the 370 known victims a pitiful amount – £3.25m over 10 years. This equated to about £15,000 for the worst affected. Actuarial assessments reckoned they would need £100,000 to support them for life.

— The Sunday Times, under the editorship of Harry Evans, decided to act. Some compensation cases were still continuing, so contempt of court laws meant that the newspaper could not challenge Distillers’ negligence in distributing the drug. Legal advice, however, suggested that the newspaper could assert that the children deserved better on “moral grounds”.

— In September 1972, The Sunday Times published the first in a series of articles under the headline “Our Thalidomide Children: a Cause for National Shame”. Cheques and offers of help flooded in from readers. Jack Ashley, the Labour MP, took up the issue in the Commons and shareholders in Distillers revolted. Within months, the firm had reconsidered its offer and a deal worth £32.5m was finalised.

— The newspaper then decided to fight the injunction on its investigation into the origins and testing of the drug. The case went right through the British legal system and up to the European Court of Human Rights, which decided that the injunction violated the right of “freedom of expression”. The full story of thalidomide could eventually be told in 1976, revealing that both Grünenthal and Distillers had not met the basic testing requirements of the time.

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