THE bus was almost always old and uncomfortable, the long journey exhausting and there were no guarantees of success at the end of it.
But as Margaret Hogg and her family piled on board to join other Scottish victims of the world’s worst drugs scandals, the regular trips from Edinburgh to London to plan their battle for justice was nothing compared to the injustice they had faced.
It was the mid-1960s, and Scots like Margaret were becoming increasingly angry. Their children, born with a range of deformities caused by a prescription drug taken during pregnancy, faced a lifetime of struggle.
Those who were not whisked away by hospital staff moments after birth never to be seen again, often faced countless intrusive medical procedures and surgeries followed by the misery of ill-fitting prosthetic limbs.
There would be playground taunts, schools which didn’t know what to do with them, an assumption they would amount to nothing and a lifetime of trying to figure out how to do even the simplest of tasks – brushing teeth, washing hair and eating – with shortened limbs.
In small meeting rooms in dotted around the country families began their fight against the thalidomide, a mild sedative developed in Germany and distributed in Britain by the Scottish-based drinks and pharmaceutical business, The Distillers Company.
It would be a battle with a particularly Scottish edge due to Distillers’ role. Steeped in Scottish Victorian heritage, the company and its Edinburgh headquarters would become the focus of mounting rage and sympathy for the families.
Margaret, now 81, was a young mother from Loanhead caring for her thalidomide-affected son David and his two siblings when she joined the fledgling Scottish branch of the Thalidomide Society at their first meetings in Edinburgh. She remains a member of its Board of Trustees.
She recalls being motivated by a deep rage.
“What angered me, was I went to my doctor and asked what was in the cough bottle, and he said just a straight-forward cough bottle,” she remembers.
“When lawyers asked for medical notes, there were no medical records for me for when I was pregnant, right up until my second pregnancy – four years and there were no records.
“Once we parents got together and started to talk, there were other mothers that had the same story. That was when I got angry and I really blew my top.”
She adds: “I had youth on my side. A lot of mothers did not have any more children after it happened, some were older, some just didn’t have any more children.
“I ended up in the thick of it.”
The first thalidomide-affected baby had been born in Germany in 1956 to an employee of drug company Grünenthal, which had developed a new sedative, thalidomide.
Within two years, the drug was licensed for distribution in the UK by Distillers Company Ltd., under the brand name Distaval.
Promoted as a ‘wonder drug’ to treat a range of conditions including headaches, insomnia and morning sickness in pregnant women, early adverts emphasised the drug’s safety using phrases such as ‘non-toxic’ and ‘no known toxicity’.
Doctors prescribed it in good faith, but a distressing number of babies born with birth defects had set alarm bells ringing among the medical profession.
Eventually Australian doctor, William McBride, made the link between thalidomide and birth defects. The drug, known in the UK as Distaval and Asmaval, was withdrawn in the UK in November 1961, 60 years ago.
Within months parents – many of whom had no idea they had even been prescribed thalidomide - were exchanging shocking stories of their children’s defects; some obvious limb deformities, others internal problems and some which led to loss of life.
“It is a mystery how people got in touch with each other,” says Dr. Ruth Blue of the Thalidomide Society, which was established just months after the drug’s withdrawal.
“Regional groups started to appear, there was the Scottish group and others in Liverpool, Central London, Northern Ireland. These groups provided places where people didn’t feel like outsiders.
“It was a very difficult time for parents,” adds Dr Blue. “They were at this starting point trying to work out what if their child’s disability was caused by thalidomide or was it something else.
“People were asking questions but the medical profession wasn’t forthcoming at all.
“Some parents left hospital with a baby that had all four limbs missing and were just sent home to try to learn how to live with this. Many were encouraged to put their children into homes.”
Some babies were removed from their mothers at birth and ‘mercy killings’ carried out.
Margaret, 18-years-old and married for only 14 months at the time, recalls pleading with nurses at Leith’s Eastern General Hospital to let her see her new-born.
“The rest of the mothers were going to the nursery but I was in a single room, by myself. I was put in there so I would not upset the other mothers. I kept saying ‘what about me?’ “I was told to just put him in a home, forget about him.” Despite having shortened limb, a deformed foot and one eye, it would be two years before thalidomide was mentioned by a doctor.
It would take until 1968 for the first group of 62 thalidomide-afffected children in the UK to receive damages from Distillers - the result of an initial settlement in the High Court.
A final settlement worth a total of £200 million would not be agreed by Distillers until 1973, after fury at the time taken for parents to be compensated had spilled over.
Councils which held shares in Distillers came under siege from campaigners demanding they took action to press the drink and pharmaceutical company into a better settlement.
While across Scotland, outrage came in the form of an emotional campaign calling for a boycott of alcohol manufactured by the company. Gordon’s Gin became a key target, with “Stay Away From Gordon’s – Make Distillers Pay”.
Two major supermarkets of the time, Wrenson and David Greig which between them took £500,000 of Distillers whisky, gin and vodka every year, launched a boycott.
Bottles of Black and White, Haig, Vat 69 and White Horse whisky were removed from shelves, along with Booths Dry Gin, Gordons, Pimms No1 and Cossack Vodka.
Tesco, however, branded the boycott “a lot of old rubbish”.
Although thalidomide had been manufactured in laboratories in Speke, near Liverpool, Distillers’ Edinburgh headquarters and its strong Scottish heritage, put brands like Johnnie Walker under attack from thalidomide supporters.
Guards were placed on the company’s offices, and the Queen was urged to remove the ‘by appointment’ royal warrant that adorned Distillers’ products.
By today’s standards, the compensation deal was a drop in the ocean. Families would face battles for years to come, to ensure they remained entitled to government benefits.
Margaret believes their persistence not only helped thalidomiders; it also helped drive forward changes in the way disabled people in general were treated by medics, in schools and by the government.
“A lot of changes that came about were down to the Thalidomide Society,” she says. “We campaigned, we got attendance allowance and blue badges, we got them into mainstream schools and fought for better access to buildings.”
Now, 60 years since the tragedy emerged and with thalidomide numbers dwindling, she fears their remarkable battle will soon be forgotten.
“When the last one of our thalidomiders go, it will be a forgotten history, it will be pushed to the back of beyond and no one will think about it anymore,” she says.
“That makes me sad. If it was not for thalidomiders and the campaigning we did for them, so many things would not have changed the way they did.”
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