They travelled to London in the mid-1990s, each carrying or pushing a child. A dozen anonymous families with 11 boys and one girl, who were to trigger the health scare of our time. The children had brain disorders. Some had autism; others, Asperger’s or epilepsy. And nearly all of the parents had come to believe that the cause was the measles, mumps and rubella (MMR) vaccine.
I think it was I who later dubbed them “the Lancet 12”, after the medical journal from which they leapt into the headlines. Written up in February 1998 by Dr Andrew Wakefield and other doctors at the Royal Free hospital, in north London, their cases at first appeared to provide credible grounds for the panic that took off over the vaccine.
Whether or not I named them, the moniker has stuck. And over the past 2½ years, in a central London committee room, their numbers have been called like pedalos in the park during the longest medical misconduct inquiry ever held.
“Now, sir, Child 5 … If the panel would turn to Child 9 … We’ll resume with Child 4 after lunch . . .”
With each call of a number, at the West End offices of the General Medical Council (GMC), lever-arch files have been yanked from cardboard crates. Front covers have been lifted. Tabs pulled. And then five QCs, five disciplinary panel members, the three doctors under investigation and a witness have together located a page — say, a GP’s note from 1996 — to be read aloud.
“Mum taking her to Dr Wakefield, Royal Free hospital, for CT scan, gut biopsies, query Crohn’s. Will need ref letter. Dr Wakefield to phone me.”
Throughout 29 widely spaced weeks of evidence and submissions, such notes have been pored over like the Dead Sea scrolls. What was wrong with these children? Why were they brought to the Royal Free? How did their medical problems end up in The Lancet?
I can answer all of that. I can name the 12 from memory. They’ve been part of my mental landscape for half a decade. As the reporter whose investigations exposed the flaws in Wakefield’s research and sparked this unprecedented inquiry, I’ve sometimes felt that these kids and I were mysteriously in it together, like the passengers on the Orient Express.
Most of their parents would be outraged by the idea: some of the mothers have grown to hate me like satan. I’m the man who pulled the rug from under the idea that, however painful, helped them to make sense of their world, and I feel for their grief.
This week, more of the saga of MMR will unfold, with “findings of fact” on who did what at the hospital. After nearly 200 days (the trial of OJ Simpson lasted 134), a panel of three doctors and two lay members will open the latest, but not the last, chapter in the story, with rulings on a raft of extraordinary charges of professional misconduct.
Strenuously denying them are three of the men whose Lancet report set off a tsunami of anxiety in 1998. That report claimed that within days of receiving MMR, eight of the 12 children showed the first signs of what was called “regressive autism”, and 11 later developed bowel disease.
At the time, the three doctors were consultants at the Royal Free, where the kids were brought for a battery of investigations. John Walker-Smith, now 73, was the most senior. He was professor of paediatric gastroenterology. Short and white-haired, with his voice betraying Australian origins, he has seemed to age as each lever-arch file has flopped open.
To his right at the hearing was Simon Murch, 53, a paediatrician whose speciality was colonoscopies. Tall and languid, he’s now a professor at Warwick University and, as the mammoth hearing has progressed, he has written and selfpublished a novel about old chums going boating on the Thames.
The sharpest spotlight was on Andrew Wakefield, 53, who sat to their left, amid a phalanx of barristers and solicitors. In the 1990s he was a researcher in the Royal Free’s medical school. And for two years before the Lancet report, at £150 an hour, he had been helping a Norfolk lawyer to gather evidence about MMR for a planned lawsuit against its manufacturer.
A former trainee gut surgeon and champion amateur rugby player, Wakefield had double Walker-Smith’s presence. He was quizzed for 22 days but called no witnesses. Then he flew to Austin, Texas, where he now runs an autism clinic, and arrived back in London last Wednesday morning.
I suppose I might call them “the MMR Three”. But, after breaking innumerable stories on how the vaccine scare was contrived, I found the doctors — like the hearing room’s dry air and ochre carpet — less memorable than the stories of the 12.
The first, Child 1, was a little boy from Lincolnshire. His mother brought him to the hospital in July 1996, when he was just 3½ years old. He was autistic, like his brother. After being admitted to a sixth-floor ward, he endured five gruelling days of tests, in what appears to have been a hunt for vaccine damage.
The other 11 kids were brought in over the following seven months: a sporadic, sad procession of broken dreams. Some were severely retarded and irrevocably autistic. None was from London. Two were brothers. One was American. Two were registered at the same GP surgery on Tyneside. Three were patients at another hospital clinic.
I’ve met many of their parents, and even some of the children. The most memorable was the American: Child 11. Now a dark-haired teenager, he recently came over for Wimbledon fortnight.
All 12 underwent similar procedures. They had an ileocolonoscopy under anaesthetic — a method of inspecting the bowel. It is a rare investigation in children, listed in ethical guidelines as “high risk”. Nearly all had lumbar punctures, MRIs and EEGs.
What was going on here? The Royal Free had no department of, and little expertise in, children’s development disorders. The GMC’s case is that the 12 were enrolled in unapproved medical research. It says Wakefield’s mission was to find evidence, in gut tissue and brain fluid, to prove a theory about how MMR could cause autism.
That theory, now discredited, proposed that autism and bowel disease were caused by the measles virus, found in the vaccine. And to show this, the council says, Wakefield wanted to examine children’s bowels and other organs.
“No one doubts or has questioned the tragedy of these children’s disorders, nor the love of their parents,” Sally Smith QC told the panel last March, closing the council’s submissions. “But this case is about the nature of the doctors’ duties towards their patients. And, of course, it is the child who is the patient in every case.”
In addition, she said, the hearing was about the reporting of research: the “accuracy and honesty and transparency” of the Lancet report. And third, she told the panel, chaired by a GP, Dr Surendra Kumar, it was about “conflicts of interest” on Wakefield’s part. “It’s a case about breaches of some of the most fundamental rules in medicine,” she said.
These are among the gravest professional charges any doctor can face, striking at the heart of medical ethics. After Germany’s experience in the second world war, volumes of regulations have evolved to protect patients, especially children, from any possibility of being treated as guinea pigs.
Against the council’s case, Wakefield and his colleagues say the tests on the 12 were solely in the children’s interests. Although no Royal Free witness or document verified this narrative, the doctors each assured the panel that every investigation, every blood test, was part of the children’s normal clinical care.
“Dr Wakefield had a profound interest in, and concern for, these children, many of whom were known to him as a result of initial contact by the parents,” said Kieran Coonan QC, Wakefield’s lawyer, closing his remarks.
Only one parent sat in the witness chair: the mother of Child 12, who had spoken of her grief on being persuaded, in the summer of 1996, that the child’s condition could be due to the vaccine. She gave evidence to the hearing back in August 2007, although she stressed that her six-year-old son was kindly treated. She had originally gone to Wakefield after contact with an MMR campaigner and the Norfolk lawyer Wakefield was working with, four years after the boy received his shot.
On Thursday this week the panel is expected to give its judgments. Vaccine safety will be back in the news. Not the old chestnut about whether MMR causes autism: this time the debate will be about the extent to which those who proposed the link can or cannot be trusted.
As for the Lancet 12 themselves, they are now young adults. Only one came, briefly, to listen. Others are in institutions, either full-time or during the week. Just a handful might comprehend their place in history.
What was reported on these children in 1998 triggered an epidemic of fear. But there have been other — forgotten — victims of the scare: the parents, who for years believed it was their own fault that a son or daughter had a brain disorder. The debate over MMR stalks their souls.
Before vaccination, their children appeared healthy and happy. Some time afterwards, there were signs of a problem and parents were led to believe it was caused by the vaccine. “I had this perfectly normal child,” said Mrs 12, giving evidence. “It was like a jigsaw puzzle that seemed to fit into place.” More of the picture will be visible on Thursday. By Brian Deer, The Sunday Times
