Why the Leveson inquiry needs to investigate the MMR scandal

This is a long post - nearly 3000 words - and is slightly off-topic as regards autism parenting. However, it touches on subjects which a lot of autism parents will be very familiar with and the way in which autism is often used as a media bogeyman, so I think it's relevant. I also think the coverage of autism and other medical conditions ought to be more to the fore in the ongoing debate on media standards. This post is also going up on my journalism blog at http://wordsforpress.wordpress.com.

My main line of work – journalism – has been in the spotlight a lot recently, thanks to the Leveson inquiry into media standards. It has been uncomfortable viewing for everyone in the business who has any kind of conscience left. On Monday the editor of the Daily Mail, Paul Dacre, a man rarely troubled by such liberal encumbrances, took the witness stand. It should have been a watershed moment. Instead it was a washout.

Mr Dacre performed well at the inquiry. He championed his newspaper’s campaigning journalism, highlighting its front page identifying the murderers of Stephen Lawrence. He mounted a smart defence of those much-derided stories about light switches that cause cancer and launched a spirited attack on Hugh Grant, who had directly attacked the Mail’s newsgathering practices in an earlier session. With all due respect to Hugh Grant, however, it all felt like a bit of a sideshow. No doubt the world-famous film star was a little irked by the predictable arrival of press photographers on his doorstep demanding a snap of his new baby. But it’s not as if anybody died, or was made seriously ill as a result. Which is more than can be said with confidence for the Daily Mail and Mail on Sunday’s coverage of Andrew Wakefield and the MMR vaccine.

The unravelling of the MMR scare is well documented. In 1998, Andrew Wakefield published a research paper in The Lancet which found traces of the measles virus in the guts of some children with autism who were admitted to the Royal Free hospital in London. The sample was tiny - just 12 patients - but the coincidence of the two elements, measles virus and autism spectrum disorder, was remarkable enough to warrant further research. Wakefield, then a researcher, did not attempt any. Instead he held a press conference at which he launched a campaign for the triple MMR injection to be scrapped and replaced by single vaccines. This was despite the fact that his research did not turn up any direct evidence that the measles virus had got into the children’s guts through the vaccine. He justified the claim on the basis that eight of the 12 sets of parents believed MMR was to blame. “It's a moral issue for me,” Wakefield said. “I can't support the continued use of these three vaccines given in combination until this issue has been resolved.”

With a single leap of faith, the germ of a health crisis was sown. At first the UK media was slow to pick up the story. Then, towards the end of 2001, it exploded. Wakefield published a review paper, producing no new evidence but again questioning the immunisation programme. Then in February 2002 the BBC’s Panorama broadcast a documentary, Every Parent’s Choice. It was based on Wakefield’s campaigning in the US, where he had been embraced by the vocal anti-vaccination community. Although the programme pointed out that a succession of studies had failed to reproduce or substantiate Wakefield’s initial findings, it left the impression that there were two competing viewpoints of equal merit, when the bulk of scientific opinion, even at that stage, was against Wakefield. It also featured the “disturbing stories” of three families who were “convinced” the vaccine had caused autism in their children.

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This was the point at which the Daily Mail entered the fray. In December 2001 the Prime Minister, Tony Blair, had refused to answer a question about whether his baby son, Leo, had had the triple vaccine. The Blairs thought this was an intrusion on their privacy and a breach of their agreement with editors that their children would be kept out of the spotlight. The combination of a health concern and a prime minister on the back foot proved to be irresistible, and over the coming months the Mail mounted a diligent campaign demanding answers from Blair while stoking parents’ worst fears that they may be injecting autism directly into their children’s bodies. As Peter Hitchens wrote in a column celebrating his pre-eminent place in the vanguard of unreason: “Has he spoken to the parents of a child with autism, parents tortured by the thought that they may have brought about this misery by taking their doctor's advice, and Mr Blair's advice come to that?” You know, autism, that dreadful condition where children sit in the corner groaning and rolling their eyes. You don’t want to live with the guilt that you might have been responsible for creating such a monster, do you?

This crude caricature of autism was the cornerstone of the Mail’s campaign, encapsulated in a column by Julia Carling in June 2002 headlined “Why I wouldn't give my baby the MMR jab”: “When I see my daughter running around and playing with her toys I feel sick at the thought that I could possibly be the one responsible for changing all that if the fears of MMR and its association with autism are true. How would I feel if I never again saw my daughter play in the same way?” Instead, Carling turned her back on medical science and placed her trust in a trainee homeopath who, in her words, “takes a rounded approach by offering homeopathic and nutritional treatments which can complement a vaccination programme by strengthening the immune system.” Exactly what these treatments were, or how they helped, remains a mystery to this day, but mercifully, Carling did still immunise her child against measles. Thousands of others would not.

The effect of this coverage has been chronicled by the Economic and Social Research Council, which surveyed 1,000 people on their understanding of the MMR controversy in April and October 2002, the year of the Panorama programme. This was the height of the panic: more than 1,200 items in the media covered the issue that year, and more than half of those appeared in the month of February. In April, 30 per cent of those questioned were aware that the bulk of scientific evidence indicated that the MMR vaccine was safe. By October, that figure had dropped to 23 per cent. In April, 53 per cent of people said they would give their children the combined shot for measles, mumps and rubella; by October this number had declined to 47 per cent. In both cases about 30 per cent said they would opt for single vaccines and about five per cent would not vaccinate at all. (It’s worth considering, in the context of these figures, that single vaccines were only available privately at that time. People were not asked what their choice would be if the only options were MMR or nothing.) But there is strong evidence that public confidence had declined as a result of the intense media coverage. As the ESRC report noted, somewhat charitably: “The coverage was unintentionally misleading in creating the impression that the evidence for the link was as substantial as the evidence against it.”

I should pause here to observe that in 2002, and even 2003, the MMR-autism link was the subject of legitimate journalistic inquiry. Andrew Wakefield’s study had highlighted a matter of scientific interest which was of genuine public concern. There was no evidence at this point that his methods might be flawed or his motives less than honourable. And the medical community took great interest in his findings, for the good reason that if any link between MMR and autism could be established, it would yield valuable insights in both fields, particularly the nature of autism, which remains the subject of intense investigation. But all this was about to change as we started to learn more about Dr Andrew Wakefield.

In 2003 Brian Deer, at the Sunday Times, began investigating Wakefield’s background and the substance of his research. Within four months he had compiled a dossier of evidence detailing how Wakefield was paid with legal aid money to examine children for a case being brought in King’s Lynn, Norfolk, against vaccine manufacturers. Four of the 12 children he examined for his Lancet paper were from the same group. Wakefield had failed to disclose his involvement in the King’s Lynn lawsuit, which constituted a conflict of interest, and hidden the fact that some of the autistic children used in his study had been selected from the same families who were involved in the court action. On the back of this, The Lancet said Wakefield’s study was now “entirely flawed” and should never have been published. The following month, 10 of the 12 co-authors of Wakefield’s study retracted one of its key findings, that they had “identified associated gastrointestinal disease and developmental regression in a group of previously normal children”.

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It was clear from February 2004 that Wakefield was not to be trusted, and his Lancet paper was somewhat less than 24-carat metal. Nevertheless, you would have had to search high and low in the pages of the Mail titles for any such revelation. It ploughed ahead with its campaign, by now far removed from the question of whether or not Tony Blair should have cleared the air about little Leo's MMR jab. Blind fear, as the Mail stable know better than anyone, is a steroid for newspaper sales. And “revelations” about the MMR vaccine and its link to autism poured out of the Mail titles’ pages like raw sewage. A typical example came in the Mail on Sunday in May 2006, which reported on a study of 275 children with regressive autism and bowel disease by Wake Forest University in the US. Under the headline: “Scientists fear MMR link to autism”, it noted in the second paragraph: “The study appears to confirm the findings of British doctor Andrew Wakefield, who caused a storm in 1998 by suggesting a possible link.”

The startling thing about this story was that at the very same time, Wake Forest University was putting out a press release with the title: “Wake Forest researcher warns against making connection between presence of measles virus and autism”. Dr Stephen J Walker, whose study was the source of the Mail on Sunday’s story, said in the release: “We haven’t done anything to demonstrate that the measles virus is causing autism or even causing bowel disease.” There was nothing in his research to support the Mail’s contention that any scientist “feared” that the two were linked. The main justification for that claim came from the discredited Wakefield, who told the paper: “'The Department of Health and some of the media wanted to dismiss our research as insignificant. The excuse was that no one else had the same findings as us. What they didn't say is that no one else had looked.” This was a simple untruth: as Ben Goldacre notes, a paper had been published in March that year, in the Journal of Medical Virology, which studied children with regressive autism who had had the MMR injection to see if there was any trace of the measles virus in their bodies. None was found. Dr Stephen Walker’s study, which was less than a third complete when the Mail on Sunday pounced on it, was never concluded and its findings have not been published in any journal.

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In the meantime, something far more concerning was happening. This was the point at which the Daily Mail and its sister paper graduated from being pernicious, chauvinistic rags and became a menace to public health.

The panic that ensued after Andrew Wakefield raised the spectre of autism being linked to MMR had coincided with a sharp drop in the number of children receiving the jab. At the beginning of 1995, just after the national MMR programme was introduced, 92 per cent of children had received the triple vaccine. By 2004, this figure had dropped to around 80 per cent. The following year, following Deer’s exposure of Wakefield and the Lancet’s criticism of his paper, there was a slight upward trend, to 81 per cent, for the first time in a decade. But four years later, the Department of Health warned that immunity levels had “stalled” at about 85 per cent. Professor David Salisbury, the government’s director of immunisation, warned that “MMR uptake is still not sufficient to remove the serious threat of measles outbreaks”. And the evidence backed him up: the preponderance of measles rose rapidly in the early years of the 21^st century, peaking at 1,370 cases in 2008, and remain high today. In 2011 there were 1,030 cases in the UK, nearly three times as many as the year before. In France 15,000 cases were recorded, including six deaths, while in Germany there were two cases of subacute sclerosing panencephalitis (SSPE), a rare late complication of measles which leads to “progressive deterioration of behavior and intellect, followed by ataxia (awkwardness), myoclonic seizures, and eventually death." One of the victims, a 13-year-old girl, is thought to have developed measles after being exposed to an unvaccinated child at her local doctor’s surgery.

Unless somebody interviews parents in detail about why they chose not to give their children the triple MMR jab, we will never know the exact sequence of cause and effect that led to the fall-off in immunisation from the 92 per cent figure of 1995. Today the figure is back up at around 90 per cent, still short of the target of 95 per cent for so-called herd immunity. The consequences are clearer: measles, once on the verge of being wiped out in the western world, is virulent again in Europe, and children are dying as a result. It is almost wholly preventable: figures show that in 95 per cent of measles cases, the infected person did not have the two shots of MMR that give the strongest immunity. And there is a great deal of circumstantial evidence that the Mail titles’ distorted coverage, drawing heavily on the public statements of a doctor whose integrity had been widely questioned and topped by shrill headlines about unsubstantiated “links”, was itself intricately linked with the fall in immunisation rates across the UK. The continued prevalence of measles remains a concern with the NHS, to the extent that secondary schoolchildren are now being sent letters urging them to boost their immunity, in case their parents withdrew them from the vaccination programme during the last 10 years.

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The Mail titles kept the faith with Wakefield right up until 2010, when the General Medical Council concluded a three-year fitness to practice investigation with a damning report that found he had shown “callous disregard” for the children in his study and acted “dishonestly and irresponsibly” in the way he publicised his research. The Lancet at last retracted his paper from the public record. A year later, Mr Wakefield was struck off the medical register for good. With the crutch of its story removed, the Daily Mail and Mail on Sunday finally ditched their star witness and stood down the anti-MMR campaign. Even so, the papers remain unrepentant about their coverage. On January 29 2010, the day after Wakefield had been castigated by the GMC, the Mail published a leader column headed “MMR and the lessons doctors must learn” in which it placed the blame on Tony Blair’s stubbornness in 2001, and the government’s refusal to offer single vaccines as an alternative, for the whole ugly circus. (More recently the paper has reverted to type by blaming the French for last summer's measles outbreak.) The rejoinder 'physician, heal thyself' has rarely been more apt.

Tony Blair’s decision not to reveal Leo’s immunisation status in 2001, at a moment of high public anxiety about the MMR vaccine was a misjudgment. The prime minister and his wife had form when it came to shady medical advice, having placed their trust in alternative healers such as Carole Caplin and her mother. Similarly, it is a matter of regret that The Lancet took 12 years to retract Andrew Wakefield’s paper, and that the General Medical Council did not begin disciplinary action against him until three years after the first serious allegations about his integrity were made. But none of these misjudgments were as reprehensible as the Mail titles' decision to continue with the MMR campaign, particularly in the six years from February 2004 onwards, when Wakefield was increasingly being exposed elsewhere as a fraud. To borrow one of the Mail’s favourite lines, nothing can excuse such reckless and irresponsible behaviour. Many other media outlets covered the MMR-autism link when the controversy was at its height and questioned the wisdom of administering the MMR vaccine amid such public hysteria. But the Mail papers turned it a campaigning issue, sustained the myth of a connection between MMR and autism long after it had ceased to be a subject of legitimate public investigation, continued to portray Wakefield as a credible and diligent researcher, and in doing so complied in his deceit.

Paul Dacre is due to return to Lord Justice Leveson’s courtroom later this week. Unless he is asked about MMR – and it may now be too late – one of the most egregious episodes in recent journalism history will merit barely a footnote. It is a grave omission: a catalogue of bad practice and bad faith that went beyond mere distortion and sensationalism and may have had a detrimental effect on public health. The inquiry will have failed in its fundamental role of scrutinising ethical and professional standards in the British media, and its authority to pronounce judgment on them will be diminished. Because if helping to expose thousands of children to a virulent disease isn’t unethical or unprofessional, I can’t for the life of me think what is.

For this relief much thanks

Last week Euan had his first night in respite care. It was an odd experience. Unlike other eight-year-olds he’s not really set up for sleepovers, and our nearest family is 300 miles away, so we could count the number of nights we’ve been separated from him on two hands. Not always easy when your child rarely gets to sleep before 10 and turns every mealtime into an impromptu karaoke session.

So we were deeply grateful when, after a year of quiet lobbying, the social work department (yes, we’re known to social services. Too right we are) managed to find a place at a respite home a few miles away. At the same time, we were anxious about the idea of him going away and being cared for by strangers. Professional, dedicated strangers, but even so. Euan’s communication is slowly improving, but he lacks the ability to say what he’s thinking or how he’s feeling. He can tell you what he wants or what he doesn’t like, but he still can’t say why. And if something is seriously bothering him, he dissolves into a fierce tantrum. So asking anybody else to look after him means investing an enormous amount of trust.

We had a tour of the facility a few weeks ago. It’s a child’s paradise - soft play area, swimming pool, TV room and sensory garden (which means things that make noises in the wind or have knobbly surfaces that you can run your fingers over). And four basic bedrooms: this was the point that I realised he really was going to be spending nights in here. Eventually it’ll be whole weekends. Weekends when we can pretend to be a bit more like an ordinary family, with only one autistic child who can enjoy a couple of days out of the shadow of his noisier older brother. Ah, bliss.

We went to pick up Euan on Friday morning, after his first night away. As soon as he saw us, he pulled his shoes on and made a dash for the door. You might have thought he was desperate to get away. But this is just how Euan divides his life: home is home, school is school and respite is respite. There can be absolutely no seepage from one into the other. He might make a good secret agent.

What I do know is that all of us felt refreshed for the change of routine. In the light of this, I was interested to read recently that respite care often reduces the need for other forms of intervention. It’s now acknowledged that the stress of raising autistic children puts a strain on the mental health of the parents and makes the children more anxious, which in turn increases the demand on the health service. In the worst situations, the child or the parents, or both, end up in institutions. So it’s disappointing to read that many local authorities are shutting down or restricting respite services as part of the ongoing budget cuts. It would be a shame if short-sighted politicians and their accountants took the view that respite care is some kind of dispensable luxury when for many families it’s the difference between coping and breaking down. And that, ultimately, is a more costly business in every sense.

Education: why it's not a matter of choice

I won’t be signing the petition by 38 degrees which calls on David Cameron to reverse his policy of ending the ‘bias towards inclusion’ in schools. Though I agree with much of the sentiment behind it, and I wouldn’t trust the Tories’ plans on education as far as I could throw Michael Gove (the precise measure of which, alas, I have yet to establish under laboratory conditions), I find it too simplistic an approach. Like the petitioners, I’m not convinced that there is a ‘bias towards inclusion’ at the moment, but I’m still less sure that there ought to be one. And the whole debate about ‘parental choice’ risks obscuring a more significant issue about how we support children who need extra help in the classroom.

During the 2010 election campaign Jonathan Bartley, whose son has spina bifida, ambushed Cameron on the issue of ‘bias’. He had spent two years and considerable sums of money going through tribunals so that his child could be educated in mainstream education. But as Bartley himself goes on to say: 'this, at the end of the day, is a question of both resourcing and culture. Either we are for inclusion or we aren't. To include children with special needs in mainstream schools takes commitment and a lot of work.' It’s not (and here I depart from Bartley’s argument) about insisting on a “bias” either one way or the other. It’s about making sure the resources are in place to make sure that children are educated in the right environment, and given enough support to ensure they thrive.

My own experience comes from putting two children into the education system in Scotland. Euan was originally sent to our local primary school, chiefly because he was diagnosed too late to be given a place in a special school. His primary school did everything they could to accommodate him; his classmates, encouraged by his teacher, were hugely supportive of him even though he must have deafened them at times with his singing. But it became clear as the year went on that mainstream primary school was the wrong place for him. On the other hand, when Adam went to school two years later we fought a bitter battle against the education department’s recommendation to send him to a different special school because we felt he could cope in a mainstream primary school if he had the right support. And, so far, he has. So I have experience of arguing the case on both sides.

The problem with insisting on ‘bias’ towards mainstream education is that it implicitly relegates special education to the second division. For this reason I vehemently reject the language that describes special schools as ‘segregation’ and marks children who attend them as ‘written off’. If this is the case, then the answer is to make the education in those schools better, not to shoe-horn children who may be contented and thriving in special education into mainstream classrooms where they may end up being confused, neglected and bullied. Someone I know who works in a mainstream school recently commented on a disruptive child: ‘autism doesn’t begin to describe it.’ Actually it’s more likely that the opposite is true: in many cases autism only begins to describe a child’s condition. The full picture can be a mosaic of subtle disabilities that may need the attention of half a dozen specialists. Some children will thrive in mainstream if they are given adequate support, but sometimes we should accept that it’s too much to ask. Euan is now in a class of four children with two specialist teachers, a level of attention that a mainstream setting cannot possibly provide. There is a sensory room where he goes when he becomes overstimulated and a constant stream of therapists coming and going – again, not services we can reasonably expect to install in every primary school.

On the other hand, where a child is able to cope with the mainstream curriculum, it should be encouraged. Inclusion does have benefits for the whole class and sends out good signals about our attitude as a society to disabled people. But that goodwill is entirely worthless unless it is backed up by practical support. Unfortunately, the Tories’ cuts agenda means that classroom assistants are being laid off and services that might help disabled children, such as specialist after-school care, are increasingly thin on the ground. So more children go into the special school system who don’t belong there, to the detriment of everybody – mainstream education, special education and, worst of all, the child themselves.

The Tories’ answer of ‘promoting choice’ is a distraction from what really matters, which is making sure that children are given the right education in the right setting. That means providing classroom assistance where children are being included in mainstream, and ensuring special schools are adequately resourced rather than tainted with the language of segregation. It means doing that unfashionable thing: investing money in public services. Instead we have the latest alarming development, being pioneered in Lincolnshire, of inviting all schools, including special schools, to become privately run academies. I can’t begin to think how, or why, anybody would run a special school for profit. In fact, if anyone can convince me that Railtrack is a good business model for the education of vulnerable children, I’ll eat a train.

The myth of parental choice is that it is empowering rather than restrictive. It lands parents with the burden of securing a good education when it should fall on the state. It implies that some schools will always be worse than others, and that if your children end up in a rotten establishment it’s your own fault for not choosing wisely. Yet it’s worthless to offer people more choice if you simultaneously impoverish the choices on offer, as the government is now doing. And the reality is that parents who want to challenge the system will have less choice, not more, because of another cost-cutting measure: the withdrawal of legal aid support for education tribunals. Families who find themselves in Jonathan Bartley’s position will no longer have the means to fight the decisions the state has made about their child’s education. The solution is not more choice, but better options. If 38 degrees draft a petition on those lines, I’ll be the first to sign.

Beware the grief farmers

At the risk of raking over old ground, and fairly morbid old ground at that, I wanted to revisit the subject of grief and autism. Firstly, because it was the catalyst for an intense and fascinating discussion a while ago on the Facebook page hosted by The Thinking Person's Guide to Autism. Secondly, because of some events I'd experienced at close quarters (though I wasn't directly involved) in which real, raw, agonising grief was a factor. And thirdly, because the concept is still mixed up with feelings of guilt, shame, and a sense that it is somehow the "wrong thing to feel".

The most common objection to grieving an autism diagnosis is that grief should be reserved for an actual death. Therefore parents who grieve for an autistic child are treating them as if they are dead. This will become a source of tension and resentment when the child gets older. I'd begin addressing this point by directing people towards Jim Sinclair's essay, Don't Mourn For Us, in which Sinclair (an autistic man who was non-verbal for most of his childhood) sanctions the grief response, on the condition that people understand that what they are really grieving is their own dreams and aspirations. They mourn a child who never actually existed. If it helps you to realise this, and accept that the child who was born is fundamentally different from the child you imagined, grief is an acceptable mediator.

I've made the point before that grief is a healing process: it allows people come to terms with overwhelming and irreversible setbacks in their lives. It is often confused with misery and self-pity when its true purpose is to overcome them. On the other hand, I have had it brought into sharp focus lately that the grief felt for a child who was never born is different in nature from the grief that accompanies actual death. Recently I read a heartbreaking, unflinchingly honest memoir by the Dutch novelist Adri van der Heijden about his son Tonio, who was killed in a cycling accident in Amsterdam last year. At about the same time, somebody I know in real life lost a close relative in similar circumstances. I wouldn't try to compare my own feelings with what those people must have gone through: the bewildering sense of random injustice, the raw shock and devastation, the evaporation of hope, which is all the more intense when a young person dies. At the same time, I reject the suggestion that other people's grief can somehow console me or diminish my own. The refrain that "other people have it worse" is invoked too cheaply, too often.

Grief is a healing process, but it has to be worked through. This is the other reason why I would argue it is not misplaced in the case of autism. The alternative is to be locked in a state of unresolved grief. There are, sadly, organisations out there which depend on parents being in this state. They want people to resist, angrily and vociferously, the idea that autism is an indelible element of their child's make-up. They want them to take up cudgels and campaign to "get their child back". They will offer them all manner of snake-oil remedies and false hopes of a "cure". And they will charge a hefty premium for spurious treatments, many of which are no better than witch doctors' potions. I think of them as the grief farmers, harvesting the misery of others for their own gain. They will play on the guilt that repressed grief engenders, telling parents that if they are not prepared to sacrifice everything they own for their children, they are betraying them (why do unproven treatments, as an aside, cost so much more than medically approved ones?). All of this misses the whole point that Jim Sinclair eloquently puts forward - that you cannot "reclaim" a child who never existed in the first place. You can give them therapy, acceptance and love, you can respect their autism rather than abhorring it, and they will have a chance to thrive. And you are much better placed as a parent to offer these things once you have worked through your grief. That's why I'll go on arguing that it's OK to grieve, because to deny grief is far more damaging.

A minor milestone

The other night I had a conversation with Adam that blew my socks off. Here’s how it went.

‘Hello Adam.’

‘Hello Dad.’

‘Is mummy reading you a story?’

‘Yes.’

‘Which book is she reading?’

‘This one, it’s this one.’

‘Adam, I can’t see it. You have to tell me its name. What’s it called?’

‘The Snail and the Whale.’

It went on a bit longer, but you get the idea. What made it so noteworthy is that it’s the first time I’ve managed to talk to either of my children on the phone. Despite a few conceptual struggles – I can imagine Adam’s concentrated face as he holds the book up to the phone, not understanding that my voice and my eyes are four miles apart – he came through it pretty well. Adam is almost six and Euan is eight, so I’ve been looking forward to this moment far longer than most parents (some of whom struggle to get their children off the phone at this age), and perhaps it’s a little bit more special for that.