reply to Professor June Andrews

sent to LRB just now after this http://www.lrb.co.uk/v37/n06/letters

Professor June Andrews says, of dementia that “The sooner someone sues a GP for failure to diagnose as early as possible, the better.” It is disturbing that Andrews, responding to Francis on the subject of dementia screening, is seemingly not aware of the evidence base.

Screening is always a balance of benefit and harm. The UK National Screening Committee exists to scrutinise where the balance of benefit vs risk lies, and this year, and unchanged with its’ previous pronoucements, stated that screening for dementia should not be offered. Why? False positives are rife. If the background rate of dementia for 65 year olds is 6%, screening would find 4 of the 6 (meaning that two are given a false negative result) but 23 other people would be told they have dementia when they do not. (1) This is not just bad medicine, but harmful medicine, and is why the UKNSC do not recommend it.

Further, Andrews promotes the use of litigation to drive earlier diagnosis. This creates several problems. When it is possible to diagnose dementia ‘earlier’? We know that imaging can pick up signals from within the older brain which may or may not be abnormal. Most will never progress to a clear pattern of dementia. Would Andrews like each of these patients to be told that they ‘might’ have early – or earlier – signs of possible future dementia? Should doctors do this in order to prevent litigation against them? What about mild cognitive impairment, MCI?  This is not ‘dementia’, but is also not clearly ‘early dementia’ – given that while  5-10% of people with MCI progress to dementia each year, but 40-70% of people with MCI actually improve. (2)What then? Would Andrews like to stipulate that all should be under the dementia ‘net’, just in case?

And then there is the real life situation where people have noted memory problems. Would Andrews like me to tell my severely depressed patient, in whom I am almost certain that their minor memory difficulties are related to their overwhelming illness, that they ‘might’ have dementia? Will this prevent  me being sued, even if my patient, distressed by this news, comes to harm through my desire to protect myself?

Instead, it is far better to try and achieve ‘timely’ diagnosis, which ensures that diagnosis is done carefully, sensitively and appropriately. The truth is that making a diagnosis of dementia can be difficult, and even the experts that we call on to assist us often find the diagnosis uncertain, and use time itself as a useful way of making the diagnosis clearer and more certain. Andrews is of the view that threatening doctors with litigation will do good. I argue that a culture of fear and ‘covering ones’ professional back’ has a great capacity to harm patients through testing and ‘too early’ diagnoses which do little good, or indeed cause harm for patients, while taking resources from the people most likely to benefit. And this is usually the people who do have dementia and who are left with little support in the community. This is where the focus should be.

As for the assertion that early diagnosis can result in interventions that can prevent later disability: there is a good argument that all older people should take steps to plan their future care choices, including power of attorney,  and stopping smoking, physical activity, and a healthy diet and social interaction can benefit us whether or not we have dementia. A recent study has shown that an early psychosocial programme for people with mild Alzheimer’s disease did not improve people’s functioning. (3) We should not make promises we cannot deliver on. If professionals cannot support each other in the delivery of good care, what hope is there for patients?

Yours sincerely

1) Clinical Recognition of dementia and cognitive impairment in primary care: a meta-analysis of physician accuracy. Acta Psychiatr Scand 2011; 124;165-83

2) Political Drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis. BMJ 2013; 347;f5125

3) Efficay of psychosocial interventions in patients with mild Alzheimers’ disease: the multicentre, rater blinded, randomised Danish Alzheimer Intervention Study. (DAISY) BMJ 2012; 345:e4693

8 Responses to “reply to Professor June Andrews”

  1. Louise April 12, 2015 at 8:21 pm #

    I have tachycardia probably caused by slightly over active thyroid. My GP wanted to be prudent so sent me to a specialist GP centre for an ultra sound.
    The ultra sound technician was incompetent and failed to obtain a reading.
    The doctor sat me down and without hesitation informed me I very likely had cardiomyopathy.
    No family histor, no symptoms – nothing but a desire to prove I had heart failure. He said whenever I felt unwell it was my heart failure. He asked if I suffered chest pain. I replied in the negative – he concluded it was ‘ silent angina ‘
    He asked about family history stating he was certain a few relatives had suddenly dropped dead. AgainI answered no and challenged his diagnosis.
    He wrote a referral to the chest clinic.
    We went home – steamed open the referrals and copied them prior to attending the clinic.
    The cardiologist looked annoyed and said it was highly unlikely but referred me for an MRI and stress test.
    I was completely freaked out and while waiting for the MRI could not sleep with the light off.
    I would have paid for the scan but the local hospital has a state of the art one.
    I waited over two months for the scan.
    My GP was furious and hurried it up.
    The scan gave a complete all clear.
    The radiologist said the results would be available within five days.
    I called the hospital after hearing nothing and was told ‘ if it is serious you will find out in two months’
    If it is nothing you will wait four months.
    I asked for a private appointment with the cardiologist.
    At this point I finally got lucky – he called and told me my heart was in fine shape.
    I have PTSD from this shocking incident. If I win the lottery I will not rest until I sue the specialist GP. I have flash backs and nightmares.
    Meanwhile he gets patted on the back and given extra money for detecting heart disease.

  2. Prof June Andrews April 13, 2015 at 6:27 am #

    Dear Dr McCartney
    You are jumping to the conclusion that I support screening. Of course I don’t. There’s no evidence for it. I work with areas with low “prevalence”. You could argue that the numbers are wrong, or they’ve got an atypical population etc. But no. When I talk to the doctors they frequently tell me they don’t know how to do it or they’ve chosen not to do it because “there’s nothing I can do”. If that was my doctor and my parent had dementia I’d be really cross. I’m not saying catch them early. I’m saying don’t let them die without the benefit of a diagnosis. A significant number of doctors think there is no benefit from diagnosis and I don’t agree. I could only go to law if there was good clear evidence do dementia with no appropriate GP response, and I’m afraid I see that a lot. You guys all get so indignant about the principal and the science. I’m looking at unnecessary trouble and suffering for families. Happy to communicate more directly on June.andrews@stir.ac.uk
    Professor June Andrews

    • margaretadmin April 13, 2015 at 9:09 pm #

      The article Gavin wrote was about money for diagnosis and the LES to do this was about screening. Screening is what the UK government, supported by Alistair Burns and enacted by LES, was about. It is what Gavin wrote about and what I responded to. I therefore am at a loss, if you say that you do not support screening, to understand why you have written what you have in the LRB.
      Indeed, you say ‘I’m not saying catch them early’. This the opposite of what you said in the LRB. You said “The sooner someone sues a GP for failure to diagnose as early as possible, the better.” Are you going to retract your earlier statement?
      The numbers are indeed wrong: no one knows what the true ‘correct diagnosis’ rate of dementia is. We frequently detect memory problems but do not enter coding until investigations and formal diagnosis has been made. This is not negligent. It is good clinical care because memory problems often do not signify dementia. Or do you think doctors should be vilified for failing to diagnose ‘earlier’ even with this problem?
      Then you make an assertion that because you have talked to some doctors (where? who are they? Where do they work? In what scope did you communicate with them? ) who ‘frequently tell you they don’t know how to do it’ there a problem. Well: if I were a trainer to help fellow professionals with a difficult problem, I think I would approach the issue with an open mind, and try and find out why other people disagreed with my point of view. I am aware that many doctors work in environments where there is little or no community support for their patients, families or carers. I support timely diagnosis, which is holistic, sensitive, careful, aiming for accuracy together with safety.
      I am not sure what you mean by ” I could only go to law if there was good clear evidence do dementia with no appropriate GP response, and I’m afraid I see that a lot.”
      I’m also not sure what you mean by ‘You guys get so indignant about the principal and the science’. I’m an individual, not part of some kind of cabal, and capable of independent thought. I am unsure whether you mean that principles or science are unimportant. If you do, obviously I disagree.

      Suffering and ‘unnecessary trouble’ for families, carers and patients is also a direct consequence of false positives and negatives which have been caused by the dementia screening LES. These harms have not been systematically gathered, thus multiplying avoidable harm. It is for each individual person and or family to be helped to make choices in a timely and sensitive manner. Sometimes the diagnosis of dementia is relatively easy. More often it is complex, difficult, and requires time. It is entirely possible to do serious and lasting harm through a ‘pushed’ early diagnosis. Instead of supporting colleagues in these difficult areas, you have encouraged litigation if a diagnosis is not made as early as it could be. I think this will do harm to patients, families, carers as well as doctors and nurses.

  3. ken nielsen April 14, 2015 at 7:52 am #

    Well argued MM. The original letter in LRB bothered me.
    As a potential patient I simply cannot see the value of a diagnosis that cannot lead to useful treatment.
    No where has JA explained the “benefits of diagnosis” in these cases.

  4. Peter Gordon April 14, 2015 at 4:15 pm #

    Dear Dr McCartney,
    I fully agree with all that you say in your reply to Professor Andrews.

    I am afraid that Professor Andrews has left me confused.

    I feel muddled, as in the published reply to Dr Gavin Francis, Professor Andrews states “The sooner someone sues a GP for failure to diagnose as early as possible, the better.” In reply to you, Professor Andrews states “I’m not saying catch them early”.

    It would be most helpful if Professor Andrews could clarify her position. Is Professor Andrews going to retract her published statement in LRB?

    I have previously written about confusion amongst professionals involved in developing policy in this area: https://holeousia.wordpress.com/2013/03/07/confusion-is-everywhere/

    Recently Scotland introduced the “Glasgow Declaration” which enshrines a timely approach to the diagnosis of dementia. Across Europe, 48 organisations have now signed up to this.

    The Mental Welfare Commission, Alzheimer Scotland and Scottish Government signed this declaration. Unfortunately Alzheimer Scotland has since back-tracked on this with their current “campaign”: https://holeousia.wordpress.com/2015/02/12/alzheimer-scotland-in-a-muddle/
    As for “cognitive screening” Healthcare Improvement Scotland have made this a mandatory recommendation in all of Scotland’s acute hospitals for those aged 65 and over). As a result consent has been marginalised to allow “identification” using “brief” “screening tools” for which “no special training is required”. This is instead of time-honoured nursing and medical assessment that considers the whole person.

    Short-cuts, for “screening” I have argued, can be harmful. Rating scales, on the other hand, can have an adjunctive role. The Mental Welfare Commission have given a statement to me which would confirm that they support Healthcare Improvement Scotland in mandatory “cognitive screening” If you type “ethics” into the search field on Healthcare Improvement Scotland you get exactly zero returns. I have always argued that ethics should be fundamental to “improvement science”. However the Executive Clinical Director forHealthcare Improvement Scotland wrote to my former employers that my interest in ethics in this area amounted to “scaremongering”.

    In terms of the UK approach to the diagnosis of dementia we have to go back in time. Scotland pioneered. The Scottish Government were the architects of the first dementia strategy and HEAT target 4. These were all based on early diagnosis. The word timely was never mentioned. Those involved included Geoff Huggins as lead; the National Clinical Lead for Dementia (Dr Gary Morrison, now Medical Director for Mental Welfare Commission); Dr Peter Connelly (previously Chair of SIGN guidelines developing SIGN 86 on Dementia) https://holeousia.wordpress.com/2013/12/31/dementia-guidelines-research-and-clinical-criteria-are-not-simply-interchangeable/

    Dr Peter Connelly and Geoff Huggins were quite literally triumphant about Scotland’s success of the incentivised HEAT target based on early diagnosis of dementia. This evidence they presented to Westminster was given in most robust terms: https://holeousia.wordpress.com/2015/03/22/do-we-care-enough-about-consent/
    I have tirelessly advocated for a timely approach to the diagnosis of dementia. I was concerned that the Western world seemed to have FORGOTTEN the parabolic distribution of cognition alongside ethics, in favour of a target: https://holeousia.wordpress.com/2014/11/17/the-parabolic-pattern/

    To conclude this narrative: I am not a “disgruntled GP”- I am a specialist in cognitive assessment – amongst a number of other areas. In my view, to invoke lawyers and blame GPs is wrong and double wrong. This is a harmful approach to care and the wrong direction for the NHS.

    It is my deeply held view that my GP colleagues are the polymaths of our profession as they see the whole person through time. I have always found general practitioners deeply caring professionals with a pluralistic outlook. To describe them as a “mob”, as Professor Andrews has, in reply to Dr McCartney, I find offensive.

    Dr Peter J Gordon
    Locum Psychiatrist for Older Adults, NHS West Lothian

  5. Sunny April 20, 2015 at 6:04 pm #

    I’d like to say something from a lay perspective. My father has vascular dementia and I’ve looked after him for a number of years now. The early stages of diagnosis were secondary to falls. We weren’t initially consulted as to whether he wanted a diagnosis.

    Looking back on it, what I feel angry about is when the message comes from the prime minister down that it is very important for people to get an early diagnosis so that they can get help. What help? You get passed from pillar to post, speaking to people who don’t let you get a word in edgeways except brief yes and no type answers, and then tell you they do/don’t think that you may be entitled to help elsewhere.

    Practical help when you do get it is limited, like the OT who, as Dad’s dementia grew more advanced, kindly supplied a raised toilet seat to him without actually sitting him on the loo and without observing that he has unusually short lower legs. I told her if she wanted him to use it, she could jolly well tell the GP to prescribe extra laxatives because my father wouldn’t be able to bear down properly perched up in the air.

    I know that for various types of dementia there are things that can be done to help, but how many need to be done in the early stages? I thought the only things where early treatment is relevant were things like blood pressure and vitamin B1 deficiency where you don’t need to diagnose dementia to treat them. The public is told that drugs for Alzheimer’s don’t work in the very early stages, so that’s not much use. If my understanding is wrong, tell people what use early diagnosis with dementia is for, because if I can’t work it out, nor will many others.

    Being very cynical, I think that what’s actually behind the government’s drive towards early diagnosis is the privatisation of the NHS and outing patients that their friends in the private insurance industry won’t want to insure. (Sorry, don’t trust politicians.)

    Early diagnosis is a double whammy. You have the horror of discovering you have dementia followed by the horror of discovering that all this help that a diagnosis supposedly brings with it doesn’t exist.

    I wonder how many people realise that in a number of areas, including where I live, 4 x 15min visits a day is described as “a full package of care”.

    I’d say to anyone who wants to promote early diagnosis, tell people first there’s no expletive help out there for them, that they can look forward to losing their mind whilst praying their relatives/neighbours/friends keep doing their shopping and cooking, washing them and sorting out their money and paperwork. Then see how many people have the stomach to want a dementia diagnosis, early or at all.

  6. David Colquhound April 28, 2015 at 12:13 am #

    It is high time that someone was sued for needlessly alarming people by giving them a false positive diagnosis. Of course I don’t mean that literally because courts should have no place in such questions. But a false positive diagnosis would be devastatingly cruel.

    I presumed that the lunatic “payment for positive diagnosis” idea was a political stunt by a government minister. It was appalling that some people actually approved it.

    Thanks Margaret for yet another excellent post. You are needed more than ever now that the lunatics are in control of the asylum.

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