What ‘they’ (which is the Department of Health (DOH) in this case) have done is to launch a publicity campaign advising anyone with a cough for more than three weeks to see their GP, because it could be a sign of lung cancer. GPs are all for helping people with lung cancer, but no-one was saying that this was a good idea. There was a mixture of stress about a tidal wave of expectorating patients flooding our Tuesday surgeries (why does the Government have to launch these initiatives on a Bank Holiday weekend when we only have a 4 day week to mop up the fallout?), to concern about raising unnecessary anxiety, the harm of unwarranted chest x-rays and the overall cost to both patients and the health service of this newly trumpeted advice.

Anyone with a cough? Really? Taken at face value, the advice would mean that a baby with a cough for more than 3 weeks should see their doctor to exclude lung cancer – clearly this is ridiculous, but if the campaign makes no mention of age then how are the public meant to know who is too old and who is too young? And 3 weeks? Did they really mean 3 weeks? Don’t the DOH know that 35% of people with a simple viral respiratory infection will cough for 3 weeks? Of course they do – their own publicity poster on coughs and colds states that ‘Colds can last about 2 weeks and may end with a cough’ so don’t worry, and certainly don’t think about antibiotics – about 2 weeks must mean that some last 3 weeks, surely? Now this means that the public are meant to understand that a normal cough can certainly last 2 weeks or more and is nothing more than a harmless virus, but if your cough lasts 3 weeks then DON’T DELAY, IT COULD BE CANCER! Hmmm…can’t help feeling we need a large dose of common sense here!

So why have the DOH done this? Well, lung cancer is worth looking at because survival rates are currently very poor – with approximately 40% of patients being alive 1 year after diagnosis, and only 15% surviving 5 years.  Earlier diagnosis could make a difference in some (but not all) lung cancers, and who would not want to achieve better survival from cancer? Lung cancers associated with cough are more likely to be in a place where they can be fully removed (and so cured) by surgery, and so cough is a better symptom to focus on than, for instance, breathlessness or chest pain (by the time you have these symptoms with lung cancer you are not very likely to be cured with treatment). They have chosen 3 weeks in part because of something called ‘slippage’ – the tendency for public health messages to be watered down. If you say ‘drink no more than 14 units of alcohol’, people are likely to assume that 21 wouldn’t be too bad, if you advise people that their cholesterol should be below 5.0 then 5.5 sounds ok, and if you say 3 weeks for a cough, then people might just go to their doctor after 4 or 6 weeks. The problem is that we are all wonderfully different when we behave as patients. Some will ‘slip’ far further then 6 weeks (or even not go at all – maybe if it could be cancer they don’t want to know) while others will now present to the doctor without fail on day 22 of any cough.

Let us assume that a person has lung cancer, and is just beginning to get symptoms from it. We could put that person into one of four categories like this:

Those in the blue sections do not need this campaign, as they will see their doctor early anyway, while those in the white quadrant will not be helped by the advertising either, as sadly their cancer will already be too advanced once it has started to give symptoms so going earlier will not change the outcome. The red quadrant, therefore, is the target group – those who have cancer which could be treated, but whose natural tendency is to see their doctor late. The questions then, are these: How large is this group? Will the campaign reach them, or are they the sort of people who don’t respond to advertising campaigns? And will the earlier pick up really lead to a better survival? On the other side of this argument also lies the potential harm of the campaign – how many people who don’t have cancer will see their doctor unnecessarily, worry needlessly and be exposed to chest x-rays that do not reveal anything of concern?

Well there has been a pilot study that answers some of these questions. In response to a similar, local advertising campaign people were nearly twice as likely to see their GP if they had a cough for more than three weeks, and the referral rate for chest x-rays went up by 20%. While this was hailed in the study as evidence that the intervention was successful, we must remember that these are not, in themselves, good things. In fact appointments with a GP and chest x-rays must be seen as costs in this programme, not benefits, and the question is – is it worth it? More positively there was an increase in the lung cancer diagnosis rate of 27% in the study period. Even this, however, is not the ultimate goal, which is better survival from lung cancer. The extra cases of lung cancer were spread across all stages of the disease from early to advanced, and so many of them would not fall into the crucial red quadrant in the above diagram. The study authors concluded that a larger study was required, but, as so often happens with pilot studies, it has been hailed as a success and a national programme rolled out.

So where does that leave us? In need of a good dose of common sense! The DOH know that a public health message has to be simple in order to hit home – and so they have reduced this to a one-liner: Cough for 3 weeks = see your GP. The GP is left to fill in the details. Well here’s my take on it:

Certainly we should be mindful of lung cancer in people who are at risk. A smoker over the age of, say, 40 with an unexplained cough for 3 weeks would do well to take the advice at face value – I would want to do a chest x-ray. If the same person coughed up blood, I’d be concerned enough to do an x-ray even if it only happened once. On the other hand, if you are young or have never smoked, but your cough is dragging on, we might decide to do an x-ray at some stage, but are far more likely to sort your cough out if we look for other causes – like asthma, allergic rhinitis or heartburn. Certainly a cough that goes on much beyond 4 weeks is worth seeing your doctor about – but in most cases this won’t be because we are worried about lung cancer, it will be because the cough is driving you and your family mad, and there might be something we can actually do about it!

So with Yann Martel’s marvellous novel Life of Pi, and more specifically chapter 56 – a single page offering that is the most powerful, emotive and yet eerily accurate description of fear that I have ever come across. It is worth quoting here in its entirety. If you have ever experienced the overwhelming power of panic, you will relate to every word and find relief that someone can so reliably describe how you felt. If you have never been to the depths of fear, it is worth reading all the more so that you can  understand better those that have.

I must say a word about  fear. It is life’s only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unerring ease. It begins in your mind, always. One moment you are feeling calm, self-possessed, happy. Then fear, disguised in the garb of mild-mannered doubt, slips into your mind like a spy. Doubt meets disbelief and disbelief tries to push it out. But disbelief is a poorly armed foot soldier. Doubt does away with it with little trouble. You become anxious. Reason comes to do battle for you. You are reassured. Reason is fully equipped with the latest weapons technology. But, to your amazement, despite superior tactics and a number of undeniable victories, reason is laid low. You feel yourself weakening, wavering. Your anxiety becomes dread.

Fear next turns fully to your body, which is already aware that something terribly wrong is going on. Already your lungs have flown away like a bird and your guts have slithered away like a snake. Now your tongue drops dead like an opossum, while your jaw begins to gallop on the spot. Your ears go deaf. Your muscles begin to shiver as if they had malaria and your knees to shake as though they were dancing. Your heart strains too hard, while your sphincter relaxes too much. And so with the rest of your body. Every part of you, in the manner most suited, falls apart. Only your eyes work well. They always pay proper attention to fear.

Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you’ve defeated yourself. Fear, which is but an impression, has triumphed over you.

The matter is difficult to put into words. For fear, real fear, such as shakes you to your foundation, such as you feel when you are brought face to face with your mortal end, nestles in your memory like a gangrene: it seeks to rot everything, even the words with which to speak of it. So you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never fought the opponent who defeated you.

This ‘wordless darkness that you avoid’ is the hallmark of fear. The key question to ask if you suffer from anxiety is this: Do you avoid anything that most people see as routine? Avoiding activities such as bungee-jumping is most people’s idea of common sense, but what about using a lift, getting on a train, going into a room with a spider in it, or having an MRI scan? The military analogy works well here; fear is like an invading army that can annex part of your life if it is left undefeated. The greater the fear, the more restrictive the occupation can become, and negative phrases like ‘I can’t’ and ‘I don’t’ become commonplace. Avoidance behaviour seems so natural and logical that it often creeps in unnoticed and unchallenged over years.

It is possible to reverse this trend, to reclaim the occupied land and plan a strategic advance into enemy territory. It is not easy, as it involves facing up to fear and staring it down until eventually, like any bully, it reveals itself to have less substance than first seemed (it is, after all, ‘but an impression’). Each victory over fear, no matter how small, diminishes its power – making the next step in the campaign seem possible, and ultimate victory a realistic goal.

Nevertheless, I promised to report back the response of the giants in the supermarket world to my humble request to remove the label “Children’s” from its close attachment to certain types of sugary, chocolatey cereals. This on the seemingly reasonable grounds that separating cereals into those suitable for children, and those suitable for adults, is a false dichotomy that sends completely the wrong health message in these times of increasing obesity.

I sent letters to the local managers of both Tesco’s and Sainsbury’s and am disappointed to say that they scored 0-0 in their response – not a word or a peep or even an automated acknowledgement from either of them. Customer service is not what it used to be! The regional Customer Services offices at least wrote back, and I attach a scanned copy of their letters. Sainsbury’s were non-committal and advised me that they will be considering my comments at their next marketing team meeting – but they have not committed to responding again after this meeting and I am not holding my breath. Tesco’s gave a fuller report – full of PR babble that had little bearing to my concern. They commented on problems with space on the shelves and not wanting to take anything away from children, when all I am concerned about is the sign coming down from the ceiling. Maybe my letter was confusing and I need to restate my case – or perhaps they prefer not to understand and would rather waffle away my objection than seriously consider it.

Let me be clear. I have no problem with the fact that cereal companies manufacture sugar-coated products – some regulation here to try to keep them healthier is important, but freedom to buy unhealthy food if you so choose is necessary in a liberal democracy. I have no issue with supermarkets stocking them and giving them ample self space. Unlike cigarettes, I have no wish to see them in plain packaging or behind protective screens – they are not that bad for you after all. However, why, oh why, oh why do the supermarkets feel the need to separate them into “Adult” and “Children” categories? Granted, you won’t want to give hard-to-chew lumps to a 7 month old baby, and may prefer to avoid nuts altogether in the under 3′s, but with these minor exceptions there is no reason why an adult should not choose Frosties for breakfast, or a child prefer Shredded Wheat - or am I missing some vital nutritional understanding here?

So I shall write again, and enclose photographic evidence this time to make my point clearer. And my MP happens to be Anne Milton, Health Minister – I think a letter to her might not go amiss either. Once more into the breach…

Sainsbury’s Letter of Reply

Tesco’s Letter of Reply Page 1

Tesco’s Letter of Reply Page 2

Letter to Anne Milton MP

Letter to Tesco’s

Letter to Sainsbury’s

There have been two new studies published recently, with mixed fortunes emerging for the latest technological assault on prostate cancer. Proton beam therapy, disappointingly, has not fared well. This treatment is not much used in the UK, but a large study in America has shown that it is no better than conventional treatment, and may even have a higher incidence of complications. Side effects – in particular impotency and incontinence – are frequent, and a major problem with both radical surgery and brachytherapy, the standard treatment for early prostate cancer. Ultrasound treatment does seem to offer early promise in this regard, and the widely reported results of treatment in 42 men has shown an encouragingly low incidence of serious side effects. Far more work is needed, however, as this was a small study with only 12 months follow-up.

We also have to note that these men had early cancer – which means they were picked up through screening – and the major question remains – should these men be treated at all? I have blogged on this before, and we must remember that it is hard for a new treatment to have fewer side effects than no treatment at all.

My brief flirtations with the little blue bird were not helped by the dominance of @ signs and # tags, coupled with confusing, abbreviated hyperlinks, which hampered my attempts to decipher anything at all. I thought it best left for those with more time than sense, and left it sitting comfortably next to day time television as something to avoid.

Recently, however, I have become a convert, and like all new converts I feel a need to evangelise. If you have no desire to succumb to my attempt to persuade you to join up, you would do well to stop reading now – but if you enjoy reading new things on the internet, like this blog, then the chances are that Twitter is for you. The first thing to say about it, is that it is not at all like Facebook. The latter has the potential to both connect you to your family and friends and bore you silly in equal measure, while the former has almost nothing to do with people you actually know, and everything to do with people you would like to be influenced by. If you like where someone is coming from then you can follow their tweets, read what they are reading and be challenged by their point of view, all with the assurance that if you become irritated or offended by their utterances then the unfollow button is just two clicks away.

The beauty of Twitter is not the occasional amusing comment, but the links to interesting newspaper articles, web-based resources and the general intellectual stimulation that is out there. In all my attempts to find other blogging doctors, a Google search has only every resulted in a handful of contenders. Within a week of tweeting among the health community I now have GP blogs coming out of my ears, each one unique and interesting, tackling the same issues I face, but with its own perspective. I have discovered health resources that I never knew existed, and been prompted by the latest research as soon as it is published.

Twitter works much like a newspaper, and the great thing about it is that it is customisable and personal. My own Twitter Gazette, as you might expect, has a weighty health section with several GPs, Health Correspondents from major newspapers, British Medical Journal columnists and the like. A much lighter general science supplement comes next – with the New Scientist taking a lead here – and political interest is kept going mostly by following programmes on Radio 4. I love the fact that my newspaper can combine both print and audio media, or link to the videos of You-Tube or TED talks. What is more, the Sunday supplements that usually go straight into the recycling in my house – namely Fashion, Travel and Money Matters, can be completely absent with no wasted resources. Most of the content I have chosen is of a fairly serious nature, as I hope to learn something and not just be entertained, but since every decent newspaper has a good cartoonist, I follow Larry the Cat for some light relief. This spoof cat from No10 gives an amusing, irreverent insight into life with the PM!

Like any newspaper, I can read it carefully from cover to cover, or I can skim through it if time is short. Unlike my e mails, or even Facebook messages for that matter, if I miss a day or even a week it really doesn’t matter. I may be a little out of touch with the news, but no-one is going to ask why I haven’t replied to their urgent message, and nor will I have an overflowing in-box when I return. Unlike my newspaper, however, I can choose to interact with my virtual newsfeed if I choose to. I can put my own tweets out there, retweet what I find interesting, reply to tweets and join in conversations.

However, what I like most of all about this new medium is that it has something delightfully subversive about it. I think this stems from the fact that most of the content I read has nothing to do with Rupert Murdoch, or anyone like him. For once, I can choose to follow the thoughts of those without an editor hovering over them to make sure that they follow the political agenda of whichever media mogul owns their pen.

So, I shall be tweeting from now on. Love it or hate it, I’d be fascinated to know what you think about the site, and delighted if you would be interested in following me.

On the whole, it is an ideology that serves us well – whether you have sat on a drawing pin, suffered a heart attack or developed appendicitis, there is a cause for your pain and it can be successfully diagnosed and treated, with complete resolution of pain as the expected result. The problem is when a maxim (something that is generally true) starts to gain the status of an axiom (something that is so scientifically self-evident that it is true by definition), and this subtle shift has happened in the popular perception of pain, leaving a trail of confused chronic pain sufferers in its wake.

When pain first develops doctors will try their best to diagnose and treat it. Usually, either because of these attempts or despite them, the pain will resolve in a relatively short space of time. When it persists this usually results in more tests, scratching of heads, experiments with treatment (every prescription is an experiment) and referrals to clever doctors in specialist hospitals for…more tests and more experiments. Often, this too will result in the cause being found and a successful treatment – but what about when it doesn’t? What about a patient who has chronic regional pain syndrome – where all the tests are normal and there is no prospect of a magic bullet to target the cause of the pain? Or severe abdominal adhesions, where the cause is all too evident, but there is no treatment? Patients with these conditions, and many others like them, are not only left in chronic pain, but also confused and bewildered by a medical mindset that promised more than it could deliver, that seems to work for everyone else, but not for them.

Thankfully, in recent years there have been great advances in the understanding of the mechanisms underlying chronic pain, and pain management has begun to get the attention it deserves. Any changes in the attitude to pain, however, take a long time to trickle down into public consciousness. In the meantime there is a significant need to provide readable, supportive information for chronic pain sufferers so that they can move beyond popular perceptions into a greater understanding of their condition.

The world of Twitter is a great way of discovering new resources, and I have just come across two websites that are well worth a look at. The first is the Pain Toolkit which is a very user-friendly site that encourages people to take control of their situation with pain, and work with health professionals rather than rely on them. The second is an excellent self-help leaflet on chronic pain produced by Moodjuice. The Moodjuice website itself is worth a look at as well, as it covers other aspects of emotional health, and is full of very readable self-help leaflets.

Fabrice Muamba recovering well in hospital - but would screening help to prevent such terrifying events in the future?

Screening in these circumstances may well prove to be an excellent idea, but we must get away from the firmly held belief that testing our bodies can only be a good thing. We need to learn to question these things. What would the screening test involve, for starters? Are there any risks involved? I have heard a lot of talk about screening for causes of sudden cardiac death in young athletes, but very little detail. To perform a simple ECG, for instance, would carry no risk at all in performing the actual test, while a CT scan would involve a significant dose of radiation – not a high risk for an individual, but repeated over thousands of young people it might be of some significance.

If the test is safe, is it a good test? Does it actually pick out the people we are looking for, or will it miss half of them who will be falsely reassured by an insensitive test? More importantly, will the test falsely identify people who don’t have a problem? Presumably, a young footballer who has a positive screening test will have a more in-depth assessment, but is likely to be told at the end of it that they should give up the idea of playing at the highest level – their heart just won’t take it. That might save the life of Fabrice Muamba, but how many budding athletes would be told to give up their dreams who would not actually ever had a problem if they had continued? Ask any player in a youth academy what they think of that possibility, and I think it will be clear that there could be a significant cost to screening that has nothing to do with economics.

It may be that when a positive test is found, that treatment could be offered – which may mean a safe return to competition for the athlete involved. Again, though, we have to ask questions: What are the risks of treatment? How many people would need to be treated unnecessarily in order to save one life? Is this number acceptable? Saving a life, after all, is one of the highest goals in medicine and so some unnecessary treatment is probably acceptable, but how much?

Screening can be one of the most useful tools we have in the fight against disease, but we must be willing to ask hard questions of it, and no matter how disturbing were the scenes of CPR being performed on a football pitch, this will involve using our heads much more than our hearts.

Well, it probably will work, if by that we mean that overall consumption of alcohol will decrease. The evidence for most things is that if you increase the price of a commodity you decrease its consumption, whether it is cigarettes, petrol or chocolate bars, and the evidence is no different for alcohol. Will it make a difference to all heavy drinkers? Hardly – as the critics correctly argue, someone who is truly addicted to alcohol will not be put off by a price hike.  And what about the underlying cause of binge drinking? I can’t see it having much impact here either – there is something about the attitude to alcohol in the UK that is much more to do with culture than economics, and a rise in prices seems more of a sticking plaster solution than a curative operation.

There are questions, too, about the depth of the problem with heavy drinking in the UK. Is it as bad as the media, and possibly the Government, would have us believe? In fact, the evidence points to a sustained decline in the consumption of alcohol over the last 5 years, so there are reasons to doubt whether we need to do anything at all. Maybe it is just a cynical Coalition attempt to draw attention from the bad headlines associated with the Granny Tax hidden within the Budget, and the image of drunken louts laying claim to our city centres is just in the public imagination. This may well be true, but, like many doctors, I am in favour of minimum pricing because I come up against problem drinking far too often, and because it is young people who are not yet dependent on alcohol that worry me the most. This is where we need to look for a difference in consumption that might be achieved by getting rid of cheap alcohol.

While I find many of the arguments against the 40p minimum price to be powerful, even if they do not ultimately convince me, there is one argument that holds no sway with me at all. It is the complaint that the proposal would be unfair to moderate drinkers, and far from winning me over, it leaves me questioning the sort of society that we live in. This argument is usually stated by the supermarkets and suppliers, and I have not heard it directly from a moderate drinker themselves – but as a member of this large section of society I would like to say a loud NO to those who would like to make this argument on my behalf.

The first reason why I find myself getting agitated about this is that moderate drinkers are already paying for the problems caused by alcohol – through our taxes. The extra cost of Friday and Saturday night attendances at Accident and Emergency departments up and down the country, the extra police required to patrol our city centres at night to keep order, the financial strain of alcoholic liver disease, not to mention all the other health problems directly related to alcohol misuse – these might be more hidden costs than an extra few pence on a bottle of wine, but they are no less real. And these costs are bourne not only by moderate drinkers, but by light drinkers and teetotalers as well.

The second, more fundamental, objection I have to this complaint relates to the concept of society. If we are all content to live as self-centred individuals whose only way of judging a new policy statement is how it directly affects our own pocket, then we will have to expect to jump up and down shouting ‘not fair’ every time a new proposal even slightly dents our income. Is it not possible, however, that I might be quite content to pay a few pence extra at the checkouts if it means extra protection for the weak and vulnerable in our society? Of course it is, or why else would there be such an attachment to the NHS in the public consciousness – it is not just that we want to know that we will have health care free at the point of delivery should we fall ill ourselves, but also that we want to live in a society where no-one misses out on health care because of a lack of means. If (and it is an ‘if’, I grant you) minimum alcohol pricing will help to protect even some young people from going down a track of ever-increasing alcohol misuse, then I am willing to bet that the majority of moderate drinkers will be more than happy to pay a little more to live in that sort of society.

At the moment the only factors that influence the price of alcohol are the Government’s need for revenue in the form of duty and VAT, and the all-powerful force of the market. We have seen the market for what it is in terms of its ability to securely manage our financial systems – why should the health of our nation be so openly exposed to its amoral power as well?

The latest candidate, Strontium, offers hope. It is a drug used in the treatment of brittle bone disease (osteoporosis) and a new study has shown promising results – a slowing of the decline of the disease on x-rays, and possibly some reduction in pain also. It certainly justifies further research, but we must not get carried away with the results of one study. It will be many years before we know whether it really works, and should be routinely recommended, or whether it will join other promising treatments that failed to live up to expectations.

The problem with trying to motivate people about their health, is that it often involves definite short-term pain in the hope of possible long-term gain – suffer without that cigarette right now and you might avoid a heart attack in 20 years time – not much of a contest on a Friday night at the end of a stressful week. For this reason, I am convinced that the two best opportunities to quit smoking are either to actually have a heart attack – when the gain from breaking the habit becomes very real and very immediate – or to get pregnant – when the gain is for somebody else and your whole outlook on life has been turned on its head anyway. As a male of the species, I find this particularly depressing!

The concept of an anti-charity is all about trying to bring both the pros and the cons of behavioral change very much into the present. The idea is that you set your goal (say, losing 4 lbs of weight every month) and commit to a financial penalty should you fail to achieve it (perhaps £5 each month you miss your target). The money has to go somewhere, and it wouldn’t be right if it went to a bad cause, so the first instinct is to consider giving it to a charity of your choice – only you might like to give to that charity, and so far from motivating you to achieve your aim it may simply reward you for failure as you feel good about yourself for supporting a noble cause that is close to your heart. Someone, somewhere then came up with the genius idea of an anti-charity – a cause that is regarded by society as respectable (as opposed to a terrorist organisation or the Nazi party, for instance!), yet has very different views to your own. Then the horror of finding yourself supporting a body which subscribes to the very antithesis of your values could be very motivating indeed!

The website stickK appears to be the most developed tool for supporting this approach. It is a well-developed site that has come out of the economics department of Yale University. There is no cost to the user, other than money which they pledge to forfeit if they fail to meet their goal, and the cost of running the site (and presumably some profit) comes from a slice of the forfeited money going to the development team at stickK. Some of the anti-charities they offer include all the main British political parties, the George W Bush Presidential library, the ‘Big Four’ English Premier League clubs, and several clever pairings of diametrically opposed pressure groups – such as the Countryside Alliance and the League Against Cruel Sports. Despite being an American site there are plenty of emotionally charged British anti-charities to choose from!

There is obviously an interest in this new approach – currently there is over $10m pledged on the website – and while I am sure it will not work for everyone, I also think it could make all the difference for a fair number of people who want to change. For my own part, I would like to propose a similar approach for football fans. It would involve no money at all, but perhaps packs an extra punch: Each month you achieve your goal, you get to wear your own team’s shirt for the day, while each month you fall short…(you know what’s coming here!) you have to wear your archrival’s shirt. I think it could work!

I think I might start counting how many times aspirin hits the headlines in 2012 – twice so far and I am sure there will be more to come! Today’s news is a re-analysis of whether or not  the drug can reduce the risk of cancer. Interesting, worthy of further research, but not something that is going to send me running to the pharmacy just yet.

Why the scepticism? Well, three reasons. Firstly, the studies that were analysed were all designed to look at the risk of heart disease, not cancer – this is an important factor as it means the findings are much more likely to be due to chance than had the study been about cancer in the first place. Secondly, if the findings are true, 1000 people need to be treated for 3 to 5 years for 3 people to avoid getting a cancer. That’s a lot of people taking aspirin who were never going to get cancer anyway. And thirdly because there is bound to be another headline later this year about why taking aspirin is not such a good idea – but maybe there I have crossed the line between healthy scepticism and downright cynicism!

What was fascinating to me was the fact that he wants to have this right – but does not want to use it yet. This is a powerful testimony to the remarkable strength of the human spirit. I remain deeply concerned about the effects on our society should euthanasia be legalised, but I have to concede that maybe, for Tony Nicklinson, the reality of being locked-in to his body is easier to bear than the hopelessness he feels by having no control over his destiny.

What made me smile to myself was the implication in the news that what the guidelines say must be what happens in practice, ergo thousands of patients must be being deprived of these drugs once they get to the advanced stages of the disease. In reality, while it may be easy to define the different stages of this tragic disease in a research setting, or in the controlled environment of a NICE guidance panel, in clinical practice the transition is much more difficult to ascertain. The amusing picture that came to my mind was that of a dial on the patient’s forehead clicking over from moderate to severe, with a group of white-coated doctors standing around the patient’s bed, solemnly shaking their heads before striking Aricept from the drug chart with a big red pen. It’s as ludicrous as it sounds.

So how do doctors apply guidelines? Well, it depends what sort of guidelines they are. If NICE declare that a drug cannot be used at all, then they will be adhered to quite strictly. If they advise that a drug should sometimes be withheld on the grounds of patient safety, then you can expect doctors to follow this also. However, to recommend that a treatment, that is likely to be beneficial and is suiting an individual patient, should be withdrawn on cost grounds due to a lack of evidence – well that is a different matter entirely. Doctors like to give patients treatment that they think will work, and the difficulty in defining what constitutes severe dementia gives sufficient wriggle room that in practice these drugs are rarely withdrawn on the grounds of simply adhering to guidance – at least in my experience.

So this research will help to clarify the situation, and to improve the guidelines, but will make little difference to patients on the ground. If we can wind the clock back for someone with dementia, then that can make a significant difference to their lives, and we should do just that  – but there need to be two significant caveats to that principle.

The first is that these drugs do not work for everyone. If the average gain is to reverse the progress of the disease by 3-4 months, then there must be some patients who gain more than this – even six or nine months perhaps – and others who gain less. For some this will mean nothing at all. Then there are side effects. Most patients feel fine on these drugs, but some will not get on with them – and this is a challenge with a patient with dementia. They cannot easily explain how a drug makes them feel, and may be getting side effects that we don’t know about. Only this week we were chatting over lunch about patients of ours with dementia who have had their drugs withdrawn simply because they were at a stage where they refused to take them any more – and sometimes they then got significantly better!

The second, perhaps more important, caution here is that we will not always want to turn the clock back. Dementia can be an interminably slow process both for the sufferer and the family, who can only look on and see their loved one regress as every month passes. If the situation three months ago was intolerable, why would you want to go back to it? Sometimes these drugs can help to settle difficult behaviour in a person who is confused, but dementia can get to a stage even beyond that, where the patient is incapable of feeding themselves, speaking, toiletting or even sitting in a chair. When you get to that stage, there is a fair chance that, far from wanting to wind the clock back, you might actually want to turn it forwards as far as you can.

We can all laugh at this, but if you are at risk of anaphylactic shock from exposure to even a small quantity of peanut then you are unlikely to appreciate the joke. What are we to make of these labels? The British Medical Journal published a helpful analysis of the situation last year, which makes interesting, if sobering, reading. The link to the article is here, although you will need to be a subscriber in order to access it.

The first thing is to realise the important difference between the labelling requirements of raw ingredients and that of possible contaminants. Under EU law there is a legal requirement to list any of 14 ingredients that are commonly associated with allergy if they are one of the raw ingredients in the product. The full list of these allergens is as follows: Cereals containing gluten (wheat, rye, barley, oats, spelt and kamut), crustaceans, egg, fish, peanuts, milk, tree nuts (e.g. hazelnut, walnut etc), soy, sesame, celery, mustard, lupin (a type of bean rather than the garden flower – I had to look this up!), molluscs and sulphur dioxide or sulphites. On the other hand, allergy information about possible contaminants is entirely voluntary, with no clear guidelines for manufacturers.

Whether or not manufacturers place these advisory labels, and the wording that is used, appears to be alarmingly arbitrary. A 2010 European study published in the journal Food Additives Contaminants - a niche publication if ever there was one! – looked at the presence of peanuts and hazelnuts in cookies and chocolates that did not have either listed as an ingredient. Approximately 60% of the 500 or so products tested carried an advisory label about the possible presence of the nuts. For peanuts the presence of the label was associated with a 33% incidence of detectable quantities of peanut in the product – and for those with no label the figure was 25% – which makes using the label as your guide only marginally better than lucky dip. For Hazelnut the figures were slightly more favourable with the labelled products containing hazelnut in 60% of cases compared with 31% of unlabeled products, although this is hardly a ringing endorsement of our present system.

All of these figures seem very high, which may in part be because this study involved confectionary and biscuits, which are associated with a much higher incidence of cross contamination than other products. A further study in the Journal of Allergy and Clinical Immunology found peanut to be present in 8% of confectionary items labelled with an advisory warning, but in none of 64 non-confectionary products studied, despite the presence of a similar warning. Some caution is needed here, however, as this was a US based study and manufacturing conditions may be very different across the Atlantic.

Despite the problems with interpreting these labels we find it very difficult to ignore warning labels. For many of us it is akin to breaking the rules, or tempting fate. A survey of parents with children with nut allergies published in Paediatric Allergy and Immunology found that 80% of parents avoided products that stated May contain nuts, but only 50% avoided products with the label May contain traces of nuts. This is understandable, but worrying as there is no correlation between the wording on such labels and the chance of finding nuts in the product, or the quantity of nut that could be present.

The answer to sorting out this mess is not easy. If allergy advice labels became compulsory this could greatly restrict consumer choice for those who suffer from allergies – unnecessary advice labels could become even more commonplace as companies try to protect themselves. If the arbitrary placement of advice labels was outlawed you could even find companies adding a small quantity of an allergen to the ingredients so that they can legitimately declare it – the market share commanded by allergy sufferers is likely to be so small that they could easily take the hit, and at least they would know that they could not be sued. The amount of allergen that could cause problems is also very difficult to quantify. For most sufferers there needs to be a clearly detectable level of allergen exposure before they will suffer a reaction, but there will always be individuals who are so sensitive that even the smallest quantities will result in potentially life-threatening anaphylaxis.

Probably the best attempt to find a way forward is the incorporation of a standard risk assessment took called VITAL which has been used in Australia and New Zealand, and has some prospect of being incorporated across Europe in time. VITAL defines a threshold for allergens, with a ten-fold safety factor, and companies are advised to issue a label if their product is found to exceed this level. While this may not help the extreme anaphylaxis sufferer, it will at least give some clarity to the majority who are affected, and help for companies as well who are probably as anxious as consumers in this whole situation.

Ultimately this issue exposes yet again the difficulty in finding real facts and clear evidence when it comes to medicine - which is what motivates me to continue writing this blog. You might call it the pursuit of Truth, but as Oscar Wilde said: ‘The truth is rarely pure, and never simple.’

Dang! There’s that GCSE English – I knew it might contaminate this somehow!

Again, if you have had a hip replacement, the key thing is to find out exactly which hip you have received. This does involve going back to the orthopaedic surgeon who performed your operation – I have looked at the GP records of several of my patients and failed to find information about the specific prosthesis used in any of them.