Fighting for justice: Jackie Fletcher and her son Robert, who developed autism after being given the MMR jab as a toddler
By GILL SWAIN
Last updated at 08:43 11 July 2007
A first word book for babies lies open on a table in Jackie and John Fletcher's living room. Each page is devoted to one single-syllable word. Robert, their 15-year-old son, sits quietly, gazing at the simple, colourful pictures. He cannot read or say the words, but studies the images intently, just as he did when he was 13 months old, before his development was halted.
A month after his first birthday, Robert had a devastating epileptic fit. Dismissed initially as a febrile convulsion common in young children, it turned out to be the first of thousands of fits, damaging Robert's brain. His ill health has dominated his parents' lives.
Fighting for justice: Jackie Fletcher and her son Robert, who developed autism after being given the MMR jab as a toddler
The change in their bright, loving toddler was sudden. Ten days before his first fit, Robert had been vaccinated against measles, mumps and rubella (MMR). Unlike his two older brothers, who had been given the jabs in single doses, Robert had been injected with three viruses at once.
To the Fletchers, the connection seemed obvious - especially when Jackie heard about other children who had also apparently reacted to the MMR jab, developing bowel disease, autism, epilepsy, arthritis and other conditions within two weeks of having the vaccination.
Now a recent study has shown that as many as one in 58 children in Britain may have some form of autism - a far higher number than was previously thought to have been affected.
Two of the seven academics at Cambridge University who were involved with the research believe this may be linked to the MMR vaccine. Their colleagues, including autism expert Professor Simon Baron-Cohen who led the study, reject this view.
Thirteen years ago Jackie, a former bank clerk, set up a pressure group JABS - Justice, Awareness and Basic Support. This body became the main voice of protest and source of advice for parents who believed their children were seriously damaged by the MMR injection.
Almost single-handedly she has answered the hundreds of phone calls, letters and e-mails JABS receives every week. There are 2,000 members, but many other parents have sought its information and advice about MMR.
Jackie has worked tirelessly to get compensation for affected families and force the NHS to offer single jabs.
In 1995, she contacted gastroenterologist Dr Andrew Wakefield after he published a study suggesting a link between bowel disease, autism and the measles virus, and began advising parents to request to be referred to him. She met the then Health Secretary Tessa Jowell to suggest a Government investigation.
The official view is that MMR is safe. Several recent studies have found no link between the vaccine and conditions such as autism.
Dr Wakefield's work itself has been discredited. Next week, he will appear before a disciplinary hearing at the General Medical Council to answer a number of charges, including publishing "inadequately founded" research.
The Department of Health says the fact that some children who had the MMR jab subsequently became ill is a coincidence, with experts pointing out that children receive their MMR at an age many illnesses are first manifested.
Meanwhile, Jackie and others who questioned the safety of the triple vaccine have been accused of scaremongering and putting children's health at risk. Whatever the criticisms, the campaign clearly struck a chord. The take-up rate of the MMR vaccine dropped from 92per cent in 1995 to 1996, to below 80per cent in the late 1990s - in some parts of London it was as low as 61per cent.
Even now, the controversy is far from over. Last November, Dr Peter Fletcher (no relation), a former Government medical officer responsible for deciding whether medicines are safe, said he had seen a "steady accumulation of evidence" from scientists worldwide that the measles, mumps and rubella jab is causing brain damage in certain children.
He added that if it is proven that the jab causes autism, "the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history".
Jackie and John feel that parents are the victims - indeed, Dr Fletcher recently criticised the "very powerful people who have staked their reputations and careers on the safety of MMR and [who] are willing to do almost anything to protect themselves".
While the controversy has raged, Jackie has had the daily struggle of looking after a son increasingly disabled by his epilepsy. Robert suffers one or two fits most days and a cluster of half a dozen every eight or nine days.
He uses a wheelchair, is incontinent and speaks only the words he knew as a baby. Yet he is good-natured and affectionate, reaching for his mother to plant a kiss on her cheek whenever she passes nearby.
Jackie sleeps alongside him as most of his seizures occur at night. In the morning, she and John lift him out of bed, wash him, change his nappy, feed him then drive him to his special school.
Taking Robert out socially causes mayhem, and holidays - rare as they are - usually end in trauma.
"Birthdays and Christmases are the most difficult times because you normally buy presents reflecting your child's development, but all I get for Robert is replacements for his toys which have been lost or broken," says Jackie.
"Occasionally, I see little flashes, maybe a sudden smile, of the boy he might have been."
To compound the tragedy, in March the family's legal battle for compensation came to an end - not because a link between the MMR jab and Robert's epilepsy has ever been dismissed in court, but because of a legal technicality.
"We recently had a report from Professor Marcel Kinsbourne, a Britishborn paediatric neurologist, now working in America, who told us that Robert would have qualified for compensation in the U.S."
He said that the measles vaccine was a 'biologically plausible' cause of seizures, that Robert's first fit happened soon enough after his MMR jab to be caused by it and that there was no evidence of any other cause.
He thought "on the balance of probabilities" that the jab caused Robert's epilepsy, and a barrister estimated Jackie would have had a 60 per cent chance of success in the States, though now it was too late.
When Robert had his injection on November 23, 1992, the practice nurse noted an incorrect batch number. As a result, Jackie's lawyers spent years pursuing compensation from - as it turned out - the wrong manufacturer.
When they discovered the makers were actually the American firm Merck, it was too late. Jackie was suing under the Consumer Protection Act which has a time limit of 10 years in which actions must be launched; this period had expired.
At her home near Warrington, Cheshire, where Jackie and John live with their elder sons, Andrew, 24, and Stuart, 20, and Robert, she recalls that devastating day.
"To lose in the end on a technicality was extremely hard to accept," says Jackie, 50. "I felt I'd let Robert down. We wanted to pay for male carers to look after Robert in his own home when we can't do it any more.
"But I rationalised that Robert was no worse off that he'd been before."
Robert was born in 1991. She had given up her job to look after her children, and her husband John was doing well as a manager of transport services for Cheshire County Council. "We were delighted to have a third boy. And Robert seemed like a perfect, healthy, contented baby," says Jackie.
When it was time for Robert's immunisations, a health visitor explained to her about the new triple vaccine. "She told us how it had been used in the U.S. for 20 years without problems and that the diseases it prevented were deadly.
"She said the possible reactions were minor, such as a slight rash or swelling, or a small rise in temperature-My dad drove us to the appointment - he still holds it against himself. There is guilt at all levels.
"As a parent, you want to do the best for your children and to protect them. I have beaten myself up about having held Robert on my knee and consoled him when he cried as the needle went in."
Robert seemed a happy, normal little boy, but ten days later an afternoon of drowsiness culminated in his first fit. "I found him with his head twisted upwards, his eyes rolled back, his limbs jerking violently and burning up," says Jackie.
"It lasted three minutes, but afterwards his eyes glazed over, his breathing came in shallow gasps and his body was floppy. It was terrifying: I thought he was dying.
Rushed to hospital, Robert was covered in pink blotches. He woke up screaming and vomited several times before falling into a deep sleep.
"He woke again at midnight, stood up in his cot and said: 'Hi, Mum.' I was so relieved. I thought things were OK," says Jackie. But over the next week his behaviour changed. "He wasn't as contented. He'd always been easy to keep amused, but now he would crawl around looking for things; then, finding them, toss them away."
Three months after the first fit, Robert had another, then another after two weeks and a fourth after ten days. By then, his left side had weakened and he was losing the little speech he had. His father John says: "In photos at that time, he looks pathetic. The light had gone from his eyes."
Whenever the Fletchers took Robert to hospital appointments (he saw a range of specialists, including a neurologist; an ear, nose and throat consultant; and a haematologist), they encountered other parents who said things like "our child was fine until MMR".
They found they had been told the same things by doctors: that there was no connection with the vaccine because it contained dead versions of the viruses, or that they had never come across this before and would take a special interest.
Jackie began trawling through medical books and in 1993 discovered fits can be caused by infections such as measles and mumps. She contacted a local health official, who had come across several cases, and he put a small advert in the local paper asking other parents of vaccine-damaged children to contact him in order to gauge the extent of the problem. A public meeting was attended by 150 people, and Jackie set up JABS.
John, 55, says the negative reaction to their efforts have made him cynical. "We thought that if parents were concerned, the authorities would try to make the single vaccines easily available, not close ranks and pull up the drawbridge," he says.
"It was a shock to discover no one was interested. Tessa Jowell promised to hold a forum on Dr Wakefield's work, but it was a private meeting of 37 experts chosen by the Department of Health behind closed doors.
"The neurologist told us that Robert's ill health was 'probably the vaccine, but why pursue as you'll never get anywhere?'"
The family think Dr Wakefield is being treated unfairly. "Parents have nothing but praise for him. No child has been injured by him.
"It's appalling that the Government is determined to crucify Dr Wakefield to send a message to doctors never to question a procedure it has decided to follow," she says.
Meanwhile, Jackie and John have faced a long personal battle for compensation for their son.
They appealed to the Government's Vaccine Damage Unit, which compensates children damaged by any kind of vaccine, but their case was dismissed as they were unable to prove the "biological mechanism" that linked Robert's jab to his brain damage.
So, the family joined 1,400 other parents in suing the pharmaceutical companies. After many battles over legal aid and running out of time for action, all of these cases have failed.
"Families have been told that their child is an acceptable casualty of the vaccination system or an insignificant detail compared with the numbers saved from the diseases it prevents, but what happened to Robert is not acceptable," says Jackie.
"Part of me still believes that a man on a white horse will come galloping up with the answer and justice will be done. Deep down, I feel that I have caused all Robert's problems by taking him for the MMR jab and I'm trying to fix it for him. But I can't."
? JABS can be contacted on 01942 713565 or via www.jabs.org.uk