The Big Lie from The Daily Telegraph and the Alzheimers' Charities

Dr Vernon Coleman MB ChB DSc FRSA

There is an organisation in the UK called the Independent Press Standards Organisation (known, rather snappily, to any friends it may have, as IPSO) which is the replacement for the much unloved Press Complaints Commission. It is the watchdog which the British press has appointed to look after itself, and it claims that it exists to promote and uphold the highest professional standards of journalism in the UK and to support members of the public in seeking redress when they believe that the Editor’s Code of Practice has been breached. I doubt if many people have heard of IPSO but the idea is that people who are unhappy about stories printed in newspapers or magazines can send in their complaints to IPSO’s surprisingly large staff. The authority of IPSO is, however, not recognised by all newspapers. For example, if you have a complaint against The Guardian (and who hasn’t) you can go whistle because The Guardian is not a member.

For some weeks, I have been having a very strange correspondence with IPSO.

The Daily Telegraph does recognise IPSO and so, when the newspaper published a front page story quoting an Alzheimer charity worker as saying that dementia cannot be cured, I made a formal complaint. Back on 21st November 2016 I pointed out that it is not true to say that dementia can’t be cured. I explained that: ‘The second commonest cause of dementia is normal pressure hydrocephalus which affects thousands and can be cured with a simple operation.’

Todd Stammers of the IPSO wrote to ask me to send a copy of the article about which I was complaining and Mel Huggett, also of the IPSO, wrote saying: ‘I note from the following link (link supplied to an NHS website) that dementia is said to be one of the symptoms of Normal Pressure Hydrocephalus, rather than a form of dementia itself. I would be grateful if you could confirm whether you dispute the information contained in the link.’

On the 23rd of November, I wrote back pointing out that the dementia which is part of normal pressure hydrocephalus can be cured. I also pointed out that dementia is not a disease.

I then immediately received a reply from Tonia Milton who said that according to the NHS’s webpage on dementia: ‘The concept that dementia is a disease rather than an inevitable side effect of ageing (so called senile dementia) has been around for over 100 years. But after a century of research, there’s still a lot we don’t know about the condition and if dementia can be cured. However, many areas of research may lead to more effective treatments and possibly, a cure for dementia. Inevitably, such treatments are many years, probably decades, of hard work away. Dementia charities have argued, with some justification, that there is a lack of funding for research into dementia compared with research into treatments for other long-term conditions, such as cancer. Even without a cure, there is reason to believe that a continuous improvement in the standards of dementia care can be achieved.’

I wrote back and pointed out, again, that between 5 and 10% of dementia patients can be cured now because their dementia is caused by normal pressure hydrocephalus which can be cured with a simple operation.

I also explained that the quote the Daily Telegraph used came from a charity which specialises in Alzheimer’s and that the charity has drug company links.

`Look around the Web,’ I said, `and you will see that neurologists and neurosurgeons are increasingly frustrated by the failure to diagnose and treat normal pressure hydrocephalus. I suggest you put ‘dementia caused by normal pressure hydrocephalus’ into a search engine. The Daily Telegraph (and most of the other papers) perpetuated a myth that results in hundreds of thousands being left untreated when they could be cured.’

I pointed out that the NHS website is quite wrong in describing normal pressure hydrocephalus as rare when it patently is not.

‘The Daily Telegraph made a serious mistake,’ I concluded, ‘ in helping to perpetuate a myth which is a result of commercial influences and widespread ignorance. Many cases of dementia can be cured now – cheaply and permanently.’ On 2nd December I had a note from Isabel Gillen-Smith to say that the IPSO Complaints team were looking at my complaint and on 22nd December she wrote to say that IPSO had decided that the Daily Telegraph had merely quoted a statement from Alzheimer’s Research UK and the Alzheimer’s Society and had not been ‘significantly misleading’ in reporting that dementia is not curable. She also reported that the NHS’s position is that dementia is not curable.

I then appealed this absurd decision. I pointed out again that the word dementia is a catch-all word like ‘infection’ or ‘cancer’ and that just as there are many causes of cancer and many causes of infection so there are many causes of dementia.

`Some types of cancer are incurable,’ I wrote, ‘and some types of dementia are incurable. But the corollary is true. But do the Alzheimer’s charities want anyone to understand this? I believe they have a vested interest in promoting their own agenda. I suspect they want the words dementia and Alzheimer’s to be synonymous. They are not.’

On 25th January, Ciaran Cronin of IPSO wrote apologising for misunderstanding the nature of dementia and acknowledging that dementia is not a disease but a catch-all word used to describe a number of different diseases.

IPSO concluded, however, that since Alzheimer’s disease cannot be cured the article in the Daily Telegraph was not significantly misleading in claiming that dementia is incurable.

My scream of frustration was probably heard on the other side of the planet.

The IPSO clearly still didn’t understand that when dementia is caused by normal pressure hydrocephalus it can be cured.

Every year tens of thousands of patients are diagnosed as suffering from Alzheimer’s (and are thrown aside as incurable) when, in fact, they are suffering from normal pressure hydrocephalus and could be cured.

Does no one care?

It appears not.

Copyright Vernon Coleman

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