'How can we ever trust them again?'
(Filed: 10/02/2002)

TWELVE years ago, the government gave assurances that the first version of MMR was safe. It wasn't - it was linked to meningitis and withdrawn. So why should parents believe that the current triple vaccine is any better? Lorraine Fraser reports

As the door to the emergency ward slammed shut Juliet Parsons opened her mouth and screamed. All that was left to her was a vision of ashen-faced doctors crowding around the lifeless body of her baby son.

Nearly two hours earlier, Matthew, her first child, had gone into a fit and now he was no longer breathing.

For an hour she waited in a side ward at York District Hospital paralysed by a fear that she would never see her 14-month-old son alive again.

"I thought I was going to lose him," she said. When they took him to intensive care the consultant told me they had stablilised him but he had meningitis and would be brain damaged or deaf at best.

"It should never have happened. It is on all Matthew's medical records that this was a complication of MMR, a complication that they knew about even before they brought the vaccine here.

"As long as the majority are OK, it seems, it doesn't matter about the children who are damaged. It happened to Matthew then and it's happening to other children now.

"The government was wrong before. They said the vaccine was safe. But it almost killed my son. How can we trust them this time."

Mrs Parsons has a letter, dated 1994, from Norman Begg, a consultant epidemiologist at the Centre for Disease Surveillance in Colindale, north London, saying how sorry he was to hear that Matthew, now 12, developed the brain illness after his measles, mumps and rubella vaccination in 1990.

The letter explained that Matthew's illness, which was caused by the mumps part of the MMR vaccine, affected one in 11,000 children vaccinated with MMR in Britain.

He sought to reassure her with the information that the two vaccines most likely to cause this problem had been withdrawn from use in Britain in September 1992.

He added: "Fortunately, a majority of the children recovered very quickly without any long-term effects."

Dr Begg omitted to disclose, however, that in 1987, just as public health specialists in the Department of Health were drawing up plans to launch MMR, doctors in Canada had begun to suspect that there could be a problem with a version of the triple jab which contained a particular strain of mumps virus, known as the urabe strain.

By February 1988 the Canadians had seen eight suspicious cases of meningitis in children who had recently been vaccinated.

The use of MMR vaccines containing the urabe strain was stopped throughout Canada pending the results of tests to see whether the virus was to blame.

Nevertheless, on October 3 of that year an MMR campaign was launched in Britain using two vaccines, Pluserix and Immravax, which each contained, alongside live measles and rubella virus, urabe mumps virus.

Eighteen months later, in May 1990 the Canadian ban on MMRs containing urabe was made permanent. Two and a half years went by and millions more British children were vaccinated with the risky virus before Britain followed suit.

Jackie Fletcher, of the parents group Jabs, said yesterday: "What parents find very hard to understand is why the Department of Health did not wait for the outcome of the investigations in Canada before pushing ahead.

"It is inconceivable that they didn't know what was going on. Matthew was lucky, but other children were left deaf. One died of a heart infection that her parents now believe to have been mumps.

"These are the same officials who are now dismissing out of hand the studies Andrew Wakefield has been doing on autism and bowel disease in children who have had MMR. Its not hard to see why so many have little faith in what is now being said."

It is this question of trust that has left Tony Blair appearing unusually flat-footed. Before Christmas he hinted that he had given his son, Leo, the inoculation, leading one newspaper to declare that he had indeed done so.

The careful, legalistic form of words he used was less reassuring when studied closely.

In his statement he said that he would not advise parents to accept a treatment "knowing it to be dangerous". But nobody had accused him of knowing that MMR was dangerous, only of perhaps sharing their parental anxieties.

Ten days ago it emerged that Leo had only recently been given the jab. It now appeared to many that Mr Blair's hint had been wilfully misleading.

Last Wednesday, when the Conservatives switched policy to demanding that parents be given a choice of single jabs, the Prime Minister countered aggressively.

The Tories were "totally irresponsible" and guilty of "scaremongering", he declared.

But the failure of his government and his health offcials to reassure parents was made clear in a poll for The Telegraph yesterday which showed that three quarters of the public wanted the choice of separate jabs.

Four in 10 parents of small children said that Mr Blair's equivocation about his son's treatment had dented their confidence in MMR.

Mrs Parsons, who now lives near Lincoln with Matthew, his nine-year-old brother David, and her husband Chris, an Air Force engineering officer, feels let down by the public health officials who assured her that she was simply being a responsible parent to have Matthew vaccinated with MMR 12 years ago and that she had nothing to fear.

She was "furious" for a long while. Her son made a good recovery, although he continued to have fits for three years afterwards.

The arguments over MMR, its possible links with autism and the anger of parents denied separate jabs on the NHS have brought her experience back vividly.

She cannot understand how the government could possibly have allowed the urabe virus, which nearly killed her son, to be used in Britain when there were concerns about it elsewhere.

It makes her wonder how the public health officials can be so sure that they have all the answers on MMR this time.

"The attitude is, 'Oh Matthew is fine now', as if what happened to him doesn't matter. That is not the point. Matthew could have died. I could have lost him at 14 months.

"If they knew about the risks, how could they have let it come into the country without proper testing and proper safeguards? It was the sacrificing of the minority for the majority good."

Matthew fell ill three weeks to the day after his MMR vaccination with a high fever and the telltale swollen cheeks of mumps.

His father had taken him for the jab at a clinic held by a visiting paediatrician at RAF Church Fenton in Yorkshire where they lived.

Mrs Parsons said: "The doctor told Chris that we might notice reactions such as a fever in Matthew in three weeks' time, but that was perfectly normal because he had the virus in his system. Give him Calpol and he'll be fine.

"Interestingly, two weeks after the vaccine - the incubation period for measles - he was a bit spotty and hot but we gave him Calpol and he was fine.

"Three weeks to the day after the vaccine he was very hot and swollen around his neck. Being an intelligent person I thought, 'Oh well, that will be the mumps part and he's obviously suffering a little bit.' But I didn't really worry too much. We even went out for a barbecue and had a babysitter.

"When we came back in the evening he was projectile vomiting. The next morning he was very hot and listless. I picked Matthew up and he was just staring. I had seen fits before and I recognised that that was probably what was going to happen.

"I stripped him off and thought it would last a couple of minutes. That was the point at which I started to worry because it went on and on and on and on.

"We called the RAF medics who came quite quickly. They were absolutely terrified which made me almost hysterical. They were spongeing him down, this little naked sprat, and the fits weren't stopping.

"By the time the local doctor arrived, Matthew had been convulsing for almost an hour. He asked me to leave the room while he called the hospital which made me very anxious. Matthew then stopped breathing. I thought I was going to lose him.

"In the ambulance he stopped breathing again. They couldn't work the oxygen. The doctor had to use a bag to resuscitate him.

"He wasn't breathing when we got to the hospital. The doctor ran into the casualty and they took him into a room with rows of people waiting for him and the door just shut on me. I just screamed my head off. I thought I would never see him again."

The arrival of the three-in-one injection in Britain was announced by Edwina Curry, then Health Secretary, 14 years ago.

Leaflets encouraging parents to take it answered the question, 'Is it safe?' with an unequivocal 'yes'. They made no mention of the meningitis risk or the action taken in Canada.

Some health officials had deep misgivings, however.

One, who asked not to be named, said: "The people at the top knew the risks. Some advisers thought it was madness to take a chance with the urabe strain when other vaccines could have been used and were worried that the literature said MMR was totally safe. Some felt afterwards that millions of children had been part of a big experiment."

Then, as now, the MMR jab was safe for most children. Unfortunately, for some these concerns turned out to be well founded.

The parents of more than 300 children have now indicated that they want to sue for ill health allegedly caused by Pluserix or Immravax. More than 50 of the cases relate to meningitis.

The government was forced to act when in 1992 public health specialists in Nottingham reported that vaccine-related meningitis could be affecting up to one in 3,800 children, a figure later revised down.

Two weeks before the results of that Nottingham study were made public in the British Medical Journal, Kenneth Calman, the then Chief Medical Officer, announced that the vaccines containing urabe mumps (which had made up 80 per cent of the MMR vaccines distributed) were to be replaced with MMRII.

This was a version made by Merck Sharp & Dohme which contained a less potent mumps virus known as the Jeryl Lynn strain.

He was careful to make the point that the rate of meningitis after natural mumps (one in 400) was far higher than that found with MMR, and that the balance was still in favour of giving "any MMR vaccine". Nevertheless, in the circumstances MMRII was "preferred".

On Thursday Dr Liam Donaldson, the Chief Medical Officer, tried to allay parents' concerns about MMR and the risk of autism.

He ruled out allowing single measles vaccine on the NHS as an alternative for parents concerned about MMR, saying that single jabs would be playing "Russian roulette" with children's lives.

Dr Wakefield is working on the hypothesis that the measles virus from the vaccine can damage the gut of susceptible children, leading to autism, and that the presence of mumps virus at the same time - as in MMR - makes this more likely.

In a paper published last week he reported that tests had confirmed findings of measles virus in the bowel of children with a combination of bowel problems and autism.

Dr Donaldson dismissed the research as flawed and said that scientists had "already picked up a number of inconsistencies".

Last night Dr Wakefield, who has branded the government's stance "unsustainable and reprehensible" said: "I have been told by a senior official in the government that the decision to use the MMR vaccines containing the urabe strain was made despite repeated warnings about safety.

And the clear implication was that these vaccines were chosen because they were cheaper.

"It is time for a full investigation of exactly what has gone on in private in offical circles in relation to MMR."

Mrs Parsons, 39, decided that she could no longer trust what the government said on MMR 12 years ago. She would not allow her younger son, David, to have the vaccine.

"I feel so sorry for parents at the moment." she said. "I just cannot understand why the doctors at the Department of Health are being so strident in their approach; why they will not do the research to see if there is a problem and look at the children who have been damaged?"