'I wish the GMC could live a day in my life and see what I have seen'

The doctor who linked the MMR vaccine to autism appears before a disciplinary hearing this week. But for the families involved, the sentence is already life. Britain is running out of scientists but the star of 'Coast' wants to inspire a new generation. Her planned series on evolution could spawn a whole new species the celebrity osteoarchaeologist

Published: 15 July 2007 http://news.independent.co.uk/health/article2770999.ece

 
Aimee was a happy, communicative baby for the first year of her life. "Then she was given the jab," says her mother, Christine Collinson. "She started burning up and stopped talking. From that day she was never our Aimee again."

Now Aimee is 17 years old but cannot wash, clothe or feed herself. She needs constant attention day and night, her bottom wiped and a band attached to her mother's wrist when they go out, to stop her running off.

When the frustration of being barely able to communicate gets too much, she lashes out. "Aimee was up early this morning, before four," says Christine. "She got upset. Hence the bruises." The marks on Christine's back and arms are real. She has more to say but the story she is going to tell which takes an even more heart-breaking turn after the birth of a second child cannot be true. Not if you believe the Department of Health. It says she is wrong to go on believing that her daughter developed severe autism as a result of being given the triple vaccine against measles, mumps and rubella (MMR).

"There is now overwhelming evidence that MMR does not cause autism," says the DoH in its official guidance and almost every medic and scientist in the country agrees, at least in public. Tomorrow, the one doctor who has been prepared to challenge this universal wisdom will appear before a disciplinary hearing which may lead to his being struck off.

It is nine years since Dr Andrew Wakefield raised doubts about MMR, suggesting it may be linked to bowel disease and by extension autism. His paper in The Lancet medical journal and the media firestorm that followed triggered one of the great public-health scares of modern times. Who should parents believe? The experts and officials who insisted Dr Wakefield was scaremongering? Or the lone doctor who said the needle might destroy their baby's chance of a healthy life?

For many the risk was too high. Vaccination rates have plummeted. In London, even now, nearly half of all five-year-olds have not had the MMR jab and its subsequent booster.

Alarmed health experts have warned many times that a deadly measles epidemic may follow. It never has and relentless government information campaigns have slowly regained the trust of some parents. And questions have been asked about Dr Wakefield's methods and his motives. Critics say he is a peddler of bad medicine and hope that the fears he has raised will now be killed off once and for all.

Tomorrow, Dr Wakefield faces the General Medical Council's Fitness to Practise panel in a hearing that could last several months. The long list of charges relate to a study on children which he carried out with colleagues at the Royal Free Hospital in Hampstead, north London, and published in The Lancet in February 1998. Two of the five doctors involved have since distanced themselves from the findings. The other three will also appear at the hearing.

Among the allegations are that Dr Wakefield, Professor John Walker-Smith and Professor Simon Murch did not follow the guidelines laid down by the hospital's ethics committee; they carried out research for which they did not have approval; and they included young patients in their study who did not have the appropriate symptoms. They are also said to have carried out investigations that were not in the best interests of those patients, such as colonoscopies and lumbar punctures. Dr Wakefield is also accused of abusing his position of trust by taking blood from children at a birthday party in return for money. And he did not tell the editor of The Lancet he was involved in seeking a patent for a new vaccine, it is claimed.

It is alleged that Dr Wakefield gave advice to lawyers who were acting on behalf of children said to be damaged by MMR. He was receiving funds from the Legal Aid Board but did not tell his ethics committee, the GMC will hear. He is also said to have been "dishonest and misleading" in his dealings with the Board.

Dr Wakefield is now based at the non-profit Thoughtful House centre in Austin, Texas. He has chosen not to discuss the accusations ahead of the hearing but said last week: "My motivation is the suffering of children I've seen and the determination of devoted, articulate, rational parents to find out why part of them has been destroyed, why their child has been ruined." He could not be sure that MMR caused autism, "but the Department of Health can tell you with 100 per cent certainty that it doesn't ... and that concerns me greatly."

The number of autistic children is far higher than previously thought, it emerged last week. One child in 58 may have a related condition, believe researchers at Cambridge University. The previously accepted figure was one in 100. Professor Simon Baron Cohen of the Autism Research Centre, whose team discovered the high rate, does not believe it is due to the jab. "Evidence does not support the idea that the MMR causes autism," he says. The causes are a mystery, but many believe the neurological condition is genetic and the rise in cases is a result of better and wider diagnosis.

There have been 500 million MMR doses given in this country since the triple jab was introduced in 1988. Measles can kill, and used to do so in large numbers, but the World Health Organisation says that if 95 per cent of children are vaccinated "the herd" will be protected. Here the rate peaked at 92 per cent just before Dr Wakefield went public. The figure has crept up again, to 84 per cent.

Jabs, the parental support group formed in the early Nineties, claims there may be as many as 2,000 children affected by MMR half with autism, the rest with brain damage and related conditions. "We are still getting loads of calls every day," says Jacqui Fletcher, who started the group with her husband, John, when their son, Robert, became sick after the jab. The 15-year-old has the mental age of a baby, and Jacqui has to sleep beside him to stop him choking when he has epileptic fits. "I know everyone thinks this is over," she says, "but it's not over when you have to live with it."

Jabs believes both the vaccine damage compensation scheme set up by the government and the legal aid system are weighted against MMR cases. At one stage there were 1,400 claims before the courts but there are now only two test cases left, which may be heard later this year. The lawyers will be watching the GMC closely.

"If Wakefield is struck off," says John Fletcher, "it will discourage any doctor from asking questions about the safety of vaccines and it will leave the policy making to the government and the pharmaceutical industry. Parents who complain will be disregarded, and the research on better treatment for these children will stop. That is unthinkable."

Government arguments for MMR have always been based on civic responsibility: the jab is the best way to protect society. Yes, there is a "very, very small risk" of some kind of reaction, as one expert put it last week, but that is the case with all vaccines. However, parents act primarily on behalf of their child, not society. For those who visualise a doctor hovering over their baby with a needle, the words "very, very small" can sound like a whisper, and the word "risk" like a warning shout.

That is how it seemed to Christine Collinson when her second child was born in 1992. Like his now autistic big sister Aimee, Richard had inherited a weak immune system. "There was no way I was going to have the jab again," says their 40-year-old mother, at home in Castleford, west Yorkshire, "but the specialist told me I was being irresponsible, the stories about MMR were scaremongering and my extreme views could result in Richard being brain damaged through measles."

So she allowed him to be injected. And watched in horror as he reacted in the same way as Aimee, becoming severely autistic. He is now 15, weighs 11 stone, but can talk only in babyish code. Christine says there are still good times, and she loves her "lovely kids" with a passion. But the guilt burns. "We could have saved Richard from all this, if only we had stuck to our guns."

She knows doctors would say it was coincidence, that autism often reveals itself around the same time as the jabs are given. She knows Dr Wakefield has serious questions to answer. But when Christine looks at her children and remembers the babies they once were, she says: "That man reported something that parents like me know in ourselves to be true. I wish the GMC could live a day in my life, and see what I have seen."