Friday, 19 April 2013

BSE, MMR and official trust

This may be my advancing age, but I sat through Tuesday's rather patronising phone in programme on measles and MMR with mounting irritation, and the news that the inoculation programme in Swansea is not going very well has confirmed me in my discomfort.

I have thought hard before writing this particular blog.  But I can't be the only person to feel uneasy about the way this story is being communicated.

Before I upset everybody, let me say that I did, after some thought, have both my children inoculated using the combined vaccine some years ago.  I left it later than I was advised to because I didn't want to overload their immune system, but I did it before they went to nursery.  I don't have any regrets either.  There were no major side-effects.  It was fine.

Looking back on that period, the whole argument seemed a lot more confused than it is currently being painted - and I speak as a non-scientist.  Because I didn't really trust everything I was being told.

It was confused because autism and aspergers rates were rising spectacularly (61,000 per cent over ten years in Illinois), and I've written elsewhere why this was.  As far as I know, it had nothing to do with MMR, but you can see why people felt it might have done.

It was confused also because the previous health scare had been about BSE.  And in that case, the establishment had closed ranks to explain aggressively that there was NO risk in eating beef.  They execrated the reputations of any lonely scientists who said otherwise and bugged their phones.  They battered us with 'evidenced-based' policy, aware that - actually - nobody would be given funding to research BSE.  They took to the TV cameras to feed their children beefburgers.

As we all know, BSE was all too real, though - as it turned out - rare in humans.

So when the same thing happens again, what are people supposed to think?  The establishment execrates the reputation of Andrew Wakefield.  They talk about the 'evidence', when they know that funding is impossible to study the links between MMR and autism - try applying and see what happens to your career.  They put on phone-in programmes with experts who explain ad nauseam that there is no evidence for any link.

So what did people do a decade ago?  People remembered the controversy about Gulf War veterans whose health had collapsed after a cocktail of vaccinations.  Most people know somebody whose child has had quite serious side-effects from the MMR jab, even if it isn't autism (I certainly do).  Do you believe a government when you know that, even if there was a risk, they would probably begin by denying it?

Expediency is Whitehall's middle name.  Would they tell the full truth if there was a health problem linked to one of their pet projects - fracking, nuclear energy, GM food?  I doubt it.

Andrew Wakefield has recently claimed that US courts have paid out compensation to parents whose children developed autism after having the MMR.  I don't know if that is true or not.  All I know is that the Independent was in turn execrated for publishing his article.

The real problem here is only partly to do with Wakefield's research and the controversy that followed.  It is about the breakdown in people's trust in 'official' advice.  Personally, I find the claim that there is NO risk from MMR very difficult to swallow.

I allowed my children to have the jab because it seemed to me that the risks from complications from measles were much greater (also I very much don't want to get mumps, for obvious reasons perhaps).  But I got no help from the government weighing up these risks, just a rather cross phone call from a local health official who believed I was delaying too long.

All this explains why I winced though the BBC phone-in, and found it so unconvincing.  It was too heavy-handed.  It gave me more sympathy for the parents of Swansea who did not respond to official reassurances, because those assurances had been compromised years before.

That doesn't mean that I believe the Swansea measles outbreak is anything other than a disaster.

So is there a solution?  People will only trust official advice if they sense they are being told the whole truth.   If there is a balance of risks - and there clearly is - then that is what needs to be explained.  People are not going to be brow-beaten by experts wheeled out to explain there is NO risk, because there is never NO risk.

I know it would be in the public interest if there was NO risk.  I know that single jabs, if their import had not been banned, would confuse the public further.  But expediency isn't the same as the truth.

What we need is an Office of Health Responsibility, dedicated to the truth beyond expediency and with their own research budget.  Some people will panic faced with a complex message, but they will panic whatever happens.  In the end, trusting people with the full inconvenient truth is the only way to regain a bit of trust.

1 comment:

Mallen Baker said...

Great post David, and I agree completely. If large numbers of people don't follow official advice, you can blame them for being stupid, or you can scapegoat one or two sceptical spokespeople - but really it's a failure of your system and you have to ask why.

It's the responsibility of government with a message to convey to ensure that a message is received and understood. You've explained eloquently here why that became harder with the MMR vaccine leading to the consequences we're now seeing.