I am, in general, distinctly sceptical about mass screening programmes. Politicians, however, just love them. They use the complex scientific principle of ‘A stitch in time, save nine.’ Or else the concept of pure logical reasoning known as ‘Better to be safe than sorry.’
On a very superficial level screening is obviously a good thing. You pick up a disease early, then you ‘treat’ it, then it is gone. Huzzah! Pink ribbon anyone? Indeed, how could anyone possibly argue with such an obviously sensible thing to do? So sensible that we are drawn to this idea like moths to a flame. We flutter around it, unable to break free from its mesmerising power.
I am not suggesting that all forms of screening are useless. My favourite screening test is to take someone’s pulse. You can tell within about twenty seconds, or less, if someone has atrial fibrillation (AF). If they do, this is a condition that can be effectively managed, reducing the risk of stroke by nearly a half.
This test costs nothing, requires no great skill, is non-invasive, and…… of course it is not on any screening programme anywhere in the world (as far as I know). Strange, as it fulfils virtually all of the criteria of a successful screening test. As outlined by the WHO as far back as 1968
World Health Organization guidelines on assessing the value of a screening test
- The condition should be an important health problem.
- There should be a treatment for the condition.
- Facilities for diagnosis and treatment should be available.
- There should be a latent stage of the disease.
- There should be a test or examination for the condition.
- The test should be acceptable to the population.
- The natural history of the disease should be adequately understood.
- There should be an agreed policy on whom to treat.
- The total cost of finding a case should be economically balanced in relation to medical expenditure as a whole.
- Case-finding should be a continuous process, not just a “once and for all” project
Instead, we have vastly expensive, poorly sensitive tests for diseases where our treatments are poor, and our knowledge of the natural history of the disease is virtually non-existent. I am not discussing cancer screening here as that is a far more nuanced area.
What I am talking about here, specifically, is dementia screening. Which is the latest bonkers, poorly thought though, damaging bit of stupidity that the UK Govt is now intent forcing on General Practitioners in the UK – and the US. And that was the polite version of my real views.
Here is what the BMJ has to say about dementia screening:
‘Conclusions—Current policy is rolling out untested and uncontrolled experiments in the frailest people in society without a rigorous evaluation of its benefits and harms to individuals, families, service settings, and professionals.’
In fact, the entire article is a paean of common sense, and I would recommend anyone to try and get hold of it, and read it. But journals place themselves behind pay for view barriers nowadays, so you probably can’t.
However on of my favourite passages is the following
‘What will be the effect of encouraging more widespread and earlier diagnosis of dementia? A meta-analysis of the diagnostic accuracy of clinical tools used by general practitioners, including 15 studies on dementia, estimated that if, a clinician saw 100 consecutive community based patients with a prevalence of dementia of 6%, using current criteria he or she would correctly identify four of the six but would incorrectly identify dementia in a further 23 people.’
In short, if there were six out of a hundred patients in the community with early stage dementia. The average clinical would miss two of them, and state that twenty three without the condition had it. My, how fantastically accurate.
A good screening test needs to pick up (or not miss) well over ninety five per-cent of people who have the condition, and not misdiagnose more than one – or two – in a hundred. A misdiagnosis (false positive), is not a trivial thing. ‘I am sorry to tell you Mrs Smith, that you have dementia.’ The effects of being told this can be utterly devastating.
Finances, family planning, the sense of despair that you are going to end up unable to recognise your close family. Dribbling to yourself in a nursing home, doubly incontinent. These are all the things that flash through people’s minds when told they have dementia.
‘But don’t worry, we haven’t got any effective treatment for it either….. you will be glad to know….’ The doctors shall then happily inform the three out of four people that they have MISDIAGNOSED. Whilst thirty per cent of those with dementia wander off happily, reassured that they don’t have dementia – when they have actually got it.
There are times, when I look at the direction of travel in medicine, that I almost give in to despair. There is not enough money to pay for many proven and effective treatments. We are closing hospital beds and making nurses redundant. Our psychiatric services are virtually exterminated due to lack of funding, with severely distressed people unable to access any support.
Yet we can find money – it seems- to fund a completely useless. Sorry, not completely useless. Dementia screening is far more that completely useless – it is actively damaging. We have money to pour into an actively damaging, vastly expensive screening programme to pick up a disease that we cannot actually treat in any meaningful way. Gasp…thud. Noise of head hitting desk.
Luckily, there is always malt whisky to dull the pain.
’Political drive to screen for pre-dementia:
not evidence based and ignores the harms of diagnosis.’
Dr. Malcolm Kendrick 
Makes a lot of sense.
Start a No 10 petition?
DEMENTIA… hum…… I just wrote a letter to the politicians in Australia encompassing information – real science – on this subject amongst others.
http://justmeint.wordpress.com/2013/09/23/an-open-letter-to-the-new-australian-government/
Sorry Doc also meant to congratulate you once again on a great piece.
Ah! Indeed, ah-bloody-ha! Just last week a friend, in her late sixties, told me about her recent appointment with her GP. Apropos of nothing he suddenly enquired about her memory while on his computer screen came up the large heading “Dementia”. She quickly analysed the situation and decided that the NHS was trying to save money by assigning the demented to the “do not waste money treating this sad, old thing” bucket. So she lied brazenly and said her memory was as sharp as ever.
At least that is what she remembers doing…..Sorry, couldn’t resist. I think more people should use their own judgement nowadays in a world of bonkers medicine. I have nearly finished ‘Deadly medicines and organised crime, how big pharma has corrupted healthcare.’ and it becomes more and more obvious that, behind screening lies drugs (or drug lies). Drugs where the data on their benefits has been so manipulated that it is utterly depressing. The only reason for dementia screening, that I can see, is to ensure a bigger market for almost completely useless Alzheimer’s medication. So, that is why it is happening. It must be….mustn’t it?
Unfortunately, that makes complete sense to me!
Dear Dr Kendrick,
It is quite interesting that you have decided to take a shot at dementia, and you may well be right that increased dementia testing is biased to a greater subscription of medication, although I am sure Government would like to say that it is in the guise of better diagnosis. However if you have read the paper that i have already sent to you it highlights a much greater issue of possible misdiagnosis that has been allowed to manifest in the dementia guidelines. It is slowly being forgotten that there are reversible forms of dementia, and one of the causes is hypercalcaemia, of which 90% of cases are caused by hyperparathyroidism (HPT) or malignanacy. this is fine and it could be argued that the dementia guidelines cover this with the use of the calcium test, however this does not take into account for a little known variant of HPT, called normocalcaemic HPT, which is defined by patients who present with calcium values within normal parameters. It has therefore been argued that the introduction of the PTH (parathyroid hormone test) to the dementia guidelines and even more general usage could reduce the diagnosis of dementia, and possibly other conditions such as heart attack and stroke since both are linked to elevated calcium levels. In fact I am in the process of preparing papers on this and why also why Statins, your favorite subject, can cause dementia in certain patients. Normocalcaemic HPT is not a new condition, although only recently recognised by an international group, it was first identified by Willis et al in 1967.
Out of interest the first Alzheimer’s patients were diagnosed twenty years before HPT was discovered in humans, and it was after a conference on Alzheimer’s in 1976 that what was previously known as senile dementia became known as Alzheimer’s in order to allow these patients to have a real diagnosis and treatment plan. It is amazing that this last pint was recently glorified in the national papers.
None of this distracts from your blog which really is a start to breaking public fear in dementia.
Thanks for your thoughtful reply. As you have probably gathered, there is so much more to be said on issues, and in my blog I can merely scratch surfaces. Hopefully a big enough scratch to cause irritation, and to get people to look more deeply into things
On Mon, 23 Sep 2013 14:38:01 +0000
Governments everywhere seem to know what’s best for us.
On education, we are mandated to send our children to school which delivers a mandated system of learning. Schools have targets to reach based on test results so they teach to the test. The end result are students who know very little about the real world but know a lot about how to pass tests.
We are almost at the stage of a mandated pension system where the middlemen in the City get rich for doing diddly-squat and ends up costing pension payers around 25% of their pension.
Government offers special deals so people can buy their first, second or third overpriced home the result of which will cause another housing asset price bubble.
Governments know best about IT systems which are so poorly thought out, an eight year old would know it will never work as intended and if it did would cost ten times more than estimated to get it there.
So, my assumption here, is that our Government will know what’s best for our health. Screening must be good because they say so and will no doubt have a system of targets which our GP’s will have to hit.
I think I need that Red Pill taken by Neo in The Matrix or perhaps reality is there for all of us.
Personally I have decided to adopt my own system. Just counter everything the Government wants and live reasonably content if not happily ever after.
It is depressing that the government just want to label us all and shove us into boxes. Patients have little enough time with their GP without the GP having to try to fit in all these unwanted screenings as well. Actually would the ethical thing not be to ask the patient if they want to be screened for dementia rather than doing it without first seeking consent? This government is hell bent on removing our privacy and confidentiality in relation to medical matters and it ain’t right. Why can’t GPs be allowed to do what they trained to do rather than be a source of data for the government? The government only want to manipulate statistics as usual and once again the stats will be manipulated to falsely present a bucketful of fantastic reasons why we should be screened for dementia. I bet they won’t publish the stats about the damage and misery that false diagnoses, testing and treatment can cause.
My father (a lifelong diabetic) had a serious hypo when he was 78 and had a cardiac arrest. (He’d had a good life, he should have died – I wear a ‘DO NOT RESUSCITATE’ bracelet.) As a result of anoxia, he was brain damaged and lost his memory of the previous 20 years and had absolutely no short term memory. After a few years of caring for him at home, eventually he had to go into care, it had got to the point where he couldn’t be left alone for a moment and was a hazard to himself and others, and in truth, all my sons, who jointly helped to care for him, had gone off to Uni. I was faced with the decision of whether to continue working, and continue supporting my 3 kids through Uni, or give up working and care for my father. Social Services ‘care in the community’ was lamentable – and the Health Service (I discovered that the District Nurses, charged with giving him his insulin every day, otherwise he was likely to give himself 10 injections a day as he had literally no short term memory – were ‘teaching him how to give himself insulin’ which he had been doing for 60 years. I decided that my sons’ needs were my priority (my ‘old’ father would have said that,) and dad went into care. The assessments for dementia were a complete farce. I was told, on several occasions, that, “Of course Alzheimers is progressive and your father constantly deteriorates”, which was a total nonsense – he lost it all in an hour and never got any worse! He ended up in an EMU unit – you wouldn’t do it to a dog! Bring on Euthanasia, hopefully in time for me!
Assessments for dementia – on my observations, conducted by ‘Consultants in Care of the Elderly’ are a complete farce. Rolled out to the entire population of over 70s as another ‘tick box exercise’ for GPs – well, it would be laughable – but it’s more likely to make me cry! Can I sign up for ‘Dignitas’ now?
Dear Maureen,
Thank you so much for sharing your and your family’s experience. You should send a copy to Number Ten, recorded delivery.
Glynis
All rather sadly familiar
One of my sons worked in the Home Office where good research was ignored for quick fixes & politically popular policies. No doubt the same in the Dept of Health. The problem for experts is getting past the generalist, ambitious top civil servants , who distort research to suit the Minister’s political needs, then get promoted & move on, never caring whether the policy actually works. The saying in Whitehall was that experts should be ” on tap, not on top “. Probably correct, but the policy makers are often ignorant of the area they make policy in [ read classics at Oxbridge ].
I have taken pulses in 3 man[ including my husband ] & found AF, missed by medics who no longer seem too want to touch their patients these days!
Sue, doctors are too busy gazing at their computer screens to touch patients.
Of course, look where the most ubiquitous screening test has got us. I am talking about the measurement of Brachial Blood Pressure, by incompetent practitioners, using inappropriate or poorly calibrated tools, and ill thought out methods.
Your previous blog on the inappropriatness of current practice pretty much lays it all out.
If we are not skeptical of screening in general, I believe we should be. I have fought, argued and just plain refused to have my BP done by anyone but myself, in the comfort of my own home. I stopped my husband from going foe a needle biopsy following one “abnormal” PSA reading. I steadfastly refused to have a colorectal exam just because I was sixty. I said I would do the FOB test because that is the first line of screening in Scotland, but my US doc refused to do it. I did it myself. She is less than pleased, so she thought that she would scare the wits (well I thought that I should moderate my language) out of me following a recent necessary upper endoscopy. I refuse to go for breast screening annually, if at all. And I think it scandalous that here in the US they still insist on annual Pap smears for women in their seventies and eighties.
So, with an aging population maybe another “screening” will scare the wits and the money out of us. The fact that the “screening” is likely to cause more harm than benefit will be of little import here. I live in Houston, one of the largest health care centers in the world. I call it the “wealth care industry,” a more fitting title.
God help us all if UK and Europe continue to go down this road!!! Rant over.
BTW, I meant to mention that my husband’s PSA settled back to “normal,” and since he refuses to have any further PSA screening It is interesting that his doctor here does not actually order blood tests routinely for anything any more. This interesting observation leaves me believing that the money is in the PSA screening test, not the other “by the way” blood tests.
I will try to find out if screening for dementia has started here and how much it costs. This will be very interesting.
The PSA test should be taken away and sacrificially burned. Screening for prostate cancer most certainly does more harm than good.
I will continue to avoid the medical industry for as long as I can.. I see a dentist and an eye doctor but that is all for the last 19+ years.. I think that is why I remain healthy and prescription free.
There is actually a surprisingly accurate method of diagnosing dementia. It’s a relative (usually a son or a daughter) who says ‘Doctor I think my mother is becoming demented’. They’re generally right and that’s the only screening test I use.
Dr Pev. Nice to hear from you. I fully agree with your screening test. I suppose it isn’t really screening if someone comes in with a complaint, but hey. BTW I have deciding to start calling preventative medicine, delayative medicine. Or, if you want to be posh, I am calling it ‘cunctorative’ medicine. Cunctor being the latin for delay. Because if you trying to make people live longer you aren’t preventing death – just delaying it. On that cheery note, I shall make myself a cup of coffee.
The point being made here about creating anxiety is a very valuable one. I have just been given a diagnosis of possible familial hypercholesterolaemia, and quite frankly, all it’s done is to worry me, which I presume isn’t any good for my heart. It’s not even a definite diagnosis note, but just ‘you might have this’ (or I might not).
I have got high cholesterol, and I have got family members who had early heart disease – but they were all smokers. If you take the smokers out of the equation the heart disease vanishes – I have 3 non smoking brothers over the age of 60 who all seem ok and aren’t using statins, but now I am worried that I should be using statins – although I am a female non smoker and have no other risk factors such as diabetes and my blood pressure is fine.
Trying to get any follow up or advice from the NHS is impossible if you don’t want to attend the lipid clinic – where you are just told to take statins and not even offered a choice of statin, it has to be simvastatin, and told to “ignore the side effects”. Once was enough for me.
I’d really question the value of such so called ‘preventive’ medicine – what is it preventing? Because of the guidelines on familial hypercholesterolaemia, GPs have to advise you to take statins (I appreciate they’re in a bit of a no win situation) and to get cholesterol levels down to a completely arbitrary target. But as far as I can see from my own guesswork – which is all I’ve got to go on at the moment – my risk isn’t that high and the best preventive measures I can take are diet, weight loss and exercise. All of which I am doing.
The NHS really needs to get their act together on this, as far as I can see the current approach isn’t evidence based, isn’t suitable for individuals who are ‘resistant’ to taking statins, and needs to take actual family history into account. I accept that family history can sometimes be a predictor of heart disease risk, I accept that in some situations statins can be beneficial but expecting the average person to make a so called informed decision on treatment on the basis of no information and being scared half to death by being told they’re likely to drop dead tomorrow if they don’t take statins, isn’t helping anyone.
I wish there were more doctors like Dr Kendrick. I was put on statins in February 2011. I now know my total cholesterol level at the time was 4.6, which I now understand is considered good. (I can only guess there had been a persuasive drug rep at the surgery before my visit.) By April 2013 I was suffering memory loss, muscle loss, tight tendons and general weakness, which I would not have connected with statins but for a discussion with a Canadian Internist relative.
I read up on statin problems and took myself off the medication. 8 weeks later a blood test showed a reading for my total cholesterol of 3.10, which according to all my research is not at all positive for my health. My new doctor fortunately agreed with my coming off the statins, and I’ve changed back to a normal old fashioned diet. I am still reading, and reading, and reading. I have decided I have to become my own expert, (with a little help from some enlightened experts that I feel I can trust).
Thank goodness for the efforts of the brave few to expose the truth.
Dear Celia,
Dr Malcolm Kendrick has written a very interesting article on statins and their effects when used in the treatment of heart attacks, ‘Why the cholesterol/heart disease theory is wrong’ on THINCS. In the article he questions why some heart attacks patients when treated with statins make fast recoveries whilst others deteriorate. Another doctor has suggested that statins are analogues of vitamin D which raises an interesting theory.
If statins really are analogues of vitamin D they would raise blood calcium levels. If this is the case then it would explain why certain patients suffer memory loss and other side effects. Confusion and dementia are recognised side effects of hypercalcaemia. If you read my earlier posting please note the bit about normocalcaemic HPT, which is a very interesting subject. It could therefore be assumed that the effect of the statin is pushing the patient into a mild state of hypercalcaemia. In the case of heart attack patients the short term use of statins shows amazing similarities in recovery times to post operative HPT patients according to data by Dr James Norman (Parathyroid.com). This suggests a much closer relationship between statins and blood calcium levels.
But there are few in Government or medicine who are prepared to discuss such controversial theories that go against present medical practice. As Dr Kendrick says certain hypothesis are an article of faith, and you cant kill faith with fact. Well we can but try in the hope that eventually fact and reason will prevail in this new era of Aquarius, the homestead of knowledge.
First, thank you for your book and your blog.
I don’t mind non-invasive screening procedures, what scares me is the focus on toxic treatments they bring up. Toxic in the sense that it is not clear that benefits are greater than harms.
It doesn’t bother me screening for dementia. It scares me that it is very unlikely to be focused on replenishing vitamin D levels (they would promote vitamin D deficiency screening long before) or lowering average blood glucose (they would promote HbA1c screening long before) or detecting high homocysteine and treating it with high doses of B vitamins (they would promote excessive blood homocysteine screening long before). Of course all of the three treatments (specially the first two) look low-toxic to me.
Andres, all good points. I do think, however, that all screening carries harm – often difficult to quantify.
In the case of dementia – do we really want to know? Also, the meds are relatively toxic, and provide little true benefit.
As a follow up to some others points here.
I recently changed my Doctor as I wanted someone nearer. They did some initial checks on me and took Urine and Blood. I then got a letter from them saying that most things were okay apart from Cholesterol which was a bit high and a warning that I might need Statins at some point in the future, and an accompanying leaflet which was a suggestion for eating healthily.
On my request I asked to see the full detailed results and had a chance to talk with one of the practice nurses.
I can’t remember the exact specifics but I do remember asking if the practice got paid for recommending certain courses of treatment and or drugs. The answer was yes, they did get paid extra based on some kind of care framework.
My concern and this is observable everywhere is that the underlying structure will tend to drive behaviour. In the case of Doctors this could mean they will be targeted on some things and not on others. This will almost certainly mean a focus on wherever they are targeted because it means more money and or keeping their job.
My concern is that Government are persuaded by big Pharma and jump on what they suggest all too easily.
So called screening and least based on my research is likely to be a huge waste of resources, cause unnecessary worry and will pile yet more people through a health system which has lost its way.
On my reading of the literature isn’t the risk of dementia increased by a high-carb. diet? I think we’ve heard that about other conditions too.
All screening harmful? Surely screening middle-aged white males of north-west European ancestry for haemochromatosis would be helpful? An acquaintance of mine was very ill before the NHS diagnosed him at age about 55.
The life-long treatment for excessive iron is to donate blood. Diagnosing these people, mostly men, could also help the NHS find more blood donors!
Yes, all screening has associated harms – some are indirect. For example screening all middle aged white males of north-west European ancestry for haemochromatosis would cost one hell of a lot of money. Money that could be spent doing things that could be of greater benefits. Economists call this opportunity cost. This does not mean that benefits do not/may not outweigh the harms.
Well I fell into a ‘trap’ of having a £5 ‘ Health Check’ at the supermarket where ( every little helps)
I was curious to see what my Cholesterol was after being told years ago at the Drs, that it was high 6.9 and I should go back annually for repeat tests, (which I haven’t )
I have 2 brothers who are both overweight, have both been heavy smokers, and eat what they like, pies chips and the like, and like a drink or 3! One had a heart attack at 46 for which he had a stent fitted, and both brothers are now type 2 diabetics, and take all the medicine their Drs dish out.
I have been eating what I consider to be a ‘proper diet’ for a long time, realising that carbs really do make me more hungry and feeling odd.
I’m a bacon and egg or full fat yogurt, raspberries and chopped nuts person for breakfast, and the rest of the day follows in a similar way.
I wasn’t concerned about my Cholesterol, but on the monitor at the supermarket it came out as High, the ‘Pharmacy Assisstant ‘ doing the test said ” oh dear, I’ve never had a reading so high that it hasn’t given me figure. It must be over 7.7 because that’s what our meter goes up to, I will have to get the book out to see what they recommend”
“Don’t worry” I say, “I knew it would be high” I’m not worried about it. “We’ll you might need Statins” she casually said!
Then the blood sugar 6.1 despite fasting for 12 hrs, which I have to say
I was surprised at.
Was given a leaflet from Flora Proactive with my ‘results’ on which went straight in the bin, and was told I should get myself checked out with the GP.
Can’t help but be a little bit concerned about the 6.1 fasting blood sugar, considering I’m already eating only carbs from low carb veg and very little fruit?!! Now what do I do?
Wish I hadn’t gone for the test now.
At 6.1 it is 0.1 above ‘normal,’ whatever normal means. This is well within the range of a cheap poorly calibrated machine getting the level wrong. I would recommend getting it re-checked at your GP surgery to confirm the result. then taking it from there.
Thank you so much for the advice, I will do just that! Do you think I should also get a fasting Cholesterol as well ?
Jennie
Dear Rural Patient, Please see the following article by Stephanie Seneff, PhD. Yes, high carb diets are most definitely linked to increased risk of dementia, as are statins because they decrease brain supplies of cholesterol. OUR BRAINS ARE MAJORITY lovely, velvety lipidy cholesterol
Click to access EJIM_PUBLISHED.pdf
This is from the European Journal of Internal Medicine. Dr. Seneff is a computer scientist at Cambridge Ma, MIT Massachusetts Institute of Technology.
Review article
“Nutrition and Alzheimer’s disease: The detrimental role of a high carbohydrate diet
Stephanie Seneff, Glyn Wainwright, Luca Mascitelli
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