Correspondence with Healthcare Improvement Scotland (HIS)

I want to thank Dr Brian Robson, Executive Clinical Director for Healthcare Improvement Scotland, for agreeing that I can include his letter to my employers, NHS Forth Valley, dated 22 May 2014. I explained to Dr Brian Robson that I would like to include here his entire letter and my letter of reply.

But first a few quotes from a psychiatrist and professor for older adults (these are not quotes by me):

“I want to make a case and I want to argue why ethics is as important, if not more important than quality” 2011

“Quality is a by-product of ethics and not vice-versa”  2011

“It is extremely important for healthcare organisations to invest in ethics. Who should be trained in ethics? Each and every person in our healthcare organisation: Chief Executive, Directors, Managers, medical and nursing staff, as well as support staff. Each and every person.” 2011

Below is Dr Brian Robson’s letter to my employers and below the full html transcription:

HIS1

HIS2

From: Dr Brian Robson
Executive Clinical Director,
Healthcare Improvement Scotland
Delta House
50 West Nile Street
Glasgow
G1 2NP
0141 225 6999

22 May 2014

To: Dr Peter Murdoch
Interim Medical Director NHS Forth Valley
Carseview House
Castle Business Park
Stirling
FK9 4SW

Dear Peter,
Re Dr Peter Gordon – commuunications and media relationships

It is with regret that I am formally raising my concerns about this individual with you.

Unfortunately Dr Gordon has persisted in his unprofessional, highly selective and concerning approach to providing misinfor rmation in relation to improvement work in the field of older people’s service in NHS Scotla and. These behaviours are now having significant impact on the wellbeing of our staff and I have set out below a selection of the informatiion raised with me in relation to his activities.

Healthcare Improvement Scotland has attempted through discussion and correspondence, to engage professionally however we have exhausted this route with him as an individual and we have modified our approach to attempt to redirect readers to the sourcce of reliable information e.g. our website.

Whilst I appreciate the limitatio ons of your role as employer, I would be grateful for your formal consideration around how his damaging behaviours could be reflecting on NHS Forth Valley, causing unnecessary patient and public concern and also on what consequences these may be having in other aspects of his performance.

I also recognise the risk in raising this formal complaint in that it could be misinterpreted as censorship or worse however I am now sufficiently professionally concerned that I believe this is now necessary.

Oppressive use of social media
The OPAC twitter page has recceived frequent attention and criticism. He frequently attaches his blog to correspondence between OPAC and clinicians. HIS cannot engage with anyone on Twitter without him sending his blog to the clinician in an attempt to start debate with anyone engaged with us.

Misinformation and scaremongering
The content of the blogs often quote our engaged clinicians out of context. He clearly does not understand the improvement science approach stating that we need to submit a peer review and engage all over 65s. He also complains about his lack of engagement in the programme but continues to write factually inaccurate pieces regarding the work.

Political disruption
He copies his tweets to Alex Neil , MSP etc stating that the improvement work boards must comply with cognitive screening in all over 65s. This is not the case, delirium screening has been very much lead by Boards who have realised that they need to improve recognition and management of delirium, we a asked that over 75s where the group targeted in the testing phase. One ward per hospital.

Staff distress
It is distressing to the team and our clinical colleagues that this individual resorts to self made videos, blogs and other avenues to distort our work and message. He has been respectfully challenged by respected colleagues regarding his one way criticism of the work. He does not engage when challenged stating he ‘feels uncomfortable’ He has made everyone uncomfortable with his actions.

Waste and impact on improvement for patients
It is very distracting to have daily attention from this individual and efforts to assist his understanding and allow progress to be made have, to date, been ineffective.

Yours sincerely
Dr Brian Robson

Executive Clinical Director,

Below is internally published NHS Forth Valley position on Delirium Screening:

NHS Forth Valley

Below is my reply to Dr Peter Murdoch, Interim Medical Director, NHS Forth Valley, after I had been made aware of this letter:

My-reply1

My-reply2

My reply3

To Dr Peter Murdoch
Interim Medical Director
Carseview House
Castle Business Park
Stirling
FK9 4SW

13thJune 2014

Dear Dr Murdoch,
Many thanks for sharing this letter from Dr Brian Robson.

I welcome the opportunity to respond to the points made.

First of all I would like to make it clear that I did try to use local mechanisms to feedback into the “improvement” process. The local response was that “improvements” in delirium screening (i.e. mandatory cognitive screening of all over 65s admitted to the acute hospital – see attached) were guided by HIS. I therefore contacted HIS by letter to clarify the ethical considerations and the evidence base behind changes which I could foresee would have an impact on my day-to-day clinical practice and which caused me concern for a range of reasons.

After a partial written response by HIS Inspector, Ian Smith, I was invited to take part in a teleconference with four employees of HIS. I found this experience disappointing in that none of the four appeared to be willing to answer any of my concerns. My overall experience of HIS was of an organisation which was not willing even to consider ethical points or discuss the validity of “screening tools” the use of which it is recommending across Scotland.

My approach has always been one to encourage discussion and debate. I do not expect HIS to necessarily agree with me but I do expect them to consider my concerns seriously.

Oppressive use of social media:
I have only ever written two blogs about delirium. Both relate to ethical considerations and also look at validity of “screening tools”. My first blog “the faltering, unfaltering steps” is based entirely on evidence and material in the public domain, all of which is cited. This is not “misinformation”. My second “blog” called “Delirium Screening” was a summary produced at the request of Professor Alasdair MacLullich. I have had no response from Professor MacLullich or anybody involved in delirium improvements on the legitimate ethical issues which were raised in it. I am of the view that the public deserves a balanced presentation of the complex issue of delirium.

HIS and OPAC use social media very extensively but it appears that only content that accords with the outlook of OPAC or HIS will be considered acceptable responses. Debate is not being allowed by HIS and OPAC and runs counter to HIS claim to be “engaging”. Dr Robson’s letter makes it clear that to be allowed to be “engaged”, one must not question anything in their predetermined approach.

It is certainly not the case that “HIS cannot engage with anyone without him sending his blog to the clinician”.

I have made no films about delirium.

Misinformation and Scaremongering
These are very bold words indeed and I would like to see examples of where I have quoted “out of context”. I agree that I “do not understand the improvement science” if it is a “science” which does not require evidence (e.g. internal and external validation of “screening tools”) and consideration of ethics (e.g. consultation with the population directly affected).

Political disruption
I have come to understand that there has been significant confusion between improvement work for delirium (which are undergoing local pilots and which target patients aged 75 years and over) and the recommendations made to NHS Scotland Boards about routine cognitive screening (which are assessed by HIS Inspection visits and generally refer to all patients aged 65 years and over). From the viewpoint of a grassroots clinician the conflation of these two processes has been unhelpful. It is unfair to say that routine cognitive screening is led by NHS Boards when in fact this is a recommendation against which they are inspected by HIS. My understanding is that this recommendation is based on the Clinical Standards for Acute Care (2002) which are more than a decade old and that the Convener of the Parliamentary Health Committee (January 2013) expressed concern that these need updated. Given this clear political involvement I reserve the right to communicate with elected representatives.

Staff distress
It is not my intention to cause distress to anyone. On a point of principle however, and here I would make reference to the findings of the Francis Report, it is surely essential that critical voices are not silenced because of potential to cause “upset”. There is always a power imbalance between any organisation and any individual and a number of recent examples have illustrated the risks of always assuming that the organisation is right.

The reason that I have stated that I felt “uncomfortable” relates to a specific conversation on twitter. Although HIS and OPAC use twitter extensively it has its limitations in discussing complex issues and it was my intention to move the discussion onwards using more traditional methods of communication.

Waste and impact on improvements for patients
Given the amount of my own time that I have devoted to “engage” with Dr Robson, Prof MacLullich, Scottish Delirium Association, HIS, and OPAC it is disappointing to hear that my contributions have been a “waste” and had only negative “impact”. This is all the more so in that the responses I have had from the above parties have not “assisted my understanding” but have comprehensively failed to address my concerns.

Dr Robson states that he fears that this formal letter to my employers might be “misinterpreted as censorship”. I think that this would indeed be the view of anyone, who like me, has struggled to raise ethical issues.

History tells us that the spirit of scientific progress requires open-minded enquiry. Any organisation which is aiming to take a scientific approach must take care to remember this. My recent experience makes me feel that the headline promise that HIS “engage” meaningfully is but a hollow sound-bite. HIS is going struggle to find more “engaged clinicians” if absolute agreement with the organisation’s approach is a pre-requisite for engagement.

I am replying via e-mail for speed but will be following up by letter to yourself and to Dr Brian Robson.

It would be helpful if you could confirm if I have breached any NHS Forth Valley Policy on the matters covered in this communication.

Yours sincerely,
Dr Peter J Gordon

cc. Dr Brian Robson, Executive Clinical Director, Healthcare Improvement Scotland

I copied my letter to Alex Neil, MSP, Cabinet Minister for Health and Wellbeing, Scottish Government. I attach the reply below:

Scot-Gov-reply

A Freedom of Information Request has confirmed that Healthcare Improvement Scotland have no Social Media Policy for staff. This is surprising as Healthcare Improvement Scotland Staff use social media routinely for work. I follow NHS Forth Valley’s Social Media policies (both Personal and Business). I thus never use social media at work and when at home I use it no more extensively than Healthcare Improvement Scotland. For complex subjects like this I feel that 140 characters is limiting and so prefer more traditional means of communication.

Social-Media1

Social-Media-2

The 4AT Screening Tool

The 4AT is a new screening tool for delirium and cognitive impairment. This poem considers the 4AT screening tool. It is the work of an artist, made in a personal capacity and does not reflect the views of anybody else or indeed any organisation whatsoever

 

The 4AT screening tool
“Brevity” (less than 2 mins) is what this poet
with “no special training” so now aspires.

But words of life seem to come in the
many
and not the few.

Born backwards this poet
cannot yet spell the world
in the same way.

Today we have a “new Screening tool”
that in order of the months –
listed backwards
may “alert” us:

DECEMBER
We have darkness without consent

NOVEMBER
You are “elderly” (65 and over) so you are “at risk”

OCTOBER
Please do not be fearful. We wish to “reassure”. Please be “aware” of this.

SEPTEMBER
The way to “detect” is “simply” a “brief” “tool”
to you as a whole person

AUGUST
Internally or externally the small and large worlds
of this “new screening tool”
have yet to be validated

JULY
Peak summer, or should it be winter
(beds are counted)
this “pilot” peaks.
Is this a national experiment?

JUNE
The 4AT “compliance” is being measured

MAY
But we are reckoning with risk
and this should start and finish with the person

APRIL
Reductionism carries risks:
many unintended
many not considered.

MARCH
Tests that include sentience
are not.
Just not
the same as measuring our pulse

FEBRUARY
“Improvement work”
it sometimes seems to this untrained artist
may not welcome even artistic “scrutiny”?

JANUARY
We must start and finish our calendar year on evidence and ethics
Wilson and Jungner would agree.

Yes, I was born backwards
All so long ago
Yet I cannot spell world backwards.
The 4AT screening tool for
“Delirium and cognitive impairment”
no TA 4 me.

CropperCapture[1]

If you are interested, further personal considerations on delirium screening can be read here:

Delirium Screening

The faltering, unfaltering steps

 

My reply to Tripathi and Kumar

I thank Assistant Professor Tripathi and Dr Kumar for their reply. (1) I do prescribe the “anti-dementia” drugs, explaining to my patients that this is because they may produce mild symptomatic improvements in the short term. We may argue about definitions, but to me this is not “improving outcomes”.

After judicial review in 2010 it was confirmed that National Institute for Health and Care Excellence (NICE) “was not irrational in concluding that there is no cumulative benefit to patients after 6 months treatment with these drugs”. (2)

NICE review June 2010

The Alzheimer’s Society has much more recently stated through its Dementia Ambassador Fiona Phillips that “current treatments only help with symptoms for a short while”. (3)

The point of my letter was to highlight the difference between what evidence shows and what the “prevailing view” can be and also how this can shift in a short period of time.

Alz-Society-14-Jan-2014

References:
(1) Tripathi, S & Kumar, A. “Anti-dementia” drugs improve the outcome. 15 July 2014. http://www.bmj.com/content/348/bmj.g2607/rr/694590

(2) Outcome of judicial review for NICE guidance on drugs for Alzheimer’s disease. 24 June 2010. http://www.nice.org.uk/newsroom/features/outcomeofjr.jsp

(3) Alzheimer Society film: Dementia Ambassador, Fiona Phillips. 14 Jan 2014 http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1629

Reply by Tripathi and Kumar

This is the BMJ rapid-response reply by Assistant Professor Shailendra Mohan Tripathi Ambrish Kumar, Department of Geriatric Mental Health, King George’s Medical University, Lucknow, India. It is dated 15th April 2014.

“Anti-dementia” drugs improve the outcome
The author has been very judgmental in reaching a conclusion that anti-dementia drugs neither modify the disease nor improve the outcome. I differ on his statement that anti-dementia drug do not improve the outcome. It is true that anti-dementia drugs do not stop the progression of the disease but the statement regarding non-improvement in outcome is a little harsh. It is clear that there remains no medical or pharmacological treatment for dementia especially Alzheimer’s disease that can reverse or stop the progression of the disease. Anti-dementia drugs, particularly the cholinesterase inhibitors for people with mild to moderate Alzheimer’s disease and memantine for people with moderate to severe Alzheimer’s disease, are intended for symptom management to help improve cognition, function, behaviour, language and quality of life. Even combination of the two can be tried with very beneficial effect. By working with Geriatric patients I have come to know that symptomatic improvement can be brought in patients with Alzheimer’s dementia. This may not be that beneficial for other kind of dementias.

Improvement in patients with dementia is based on many factors. Recent studies have investigated whether specific domains of cognitive or non-cognitive symptoms respond to different treatments. An analysis of three mild to moderate Alzheimer studies showed that memantine had particular benefits in domains of orientation, following commands, praxis and comprehension (Mecocci et al., 2009). Gauthier et al. in 2008 found non-cognitive benefits for delusions, agitation/aggression and irritability through anti-dementia drugs. At the same time it was found that cholinesterase inhibitors can help behavioural symptoms by improving attention and concentration. Feldman et al. (2001) showed particular benefits for apathy, anxiety and depression.

Judicious use of antidementia drugs is required by an expert. Doses, best time to start of antidementia drugs are important which can be addressed only with experience. A patient must be free from delirium, his physical problems should be properly taken care of otherwise the patient will be at receiving end of adverse after effects of the antidementia medications. A patient on antidementia drugs would be managed better by the care giver than the patient off the antidementia drug. Clinically there is definite improvement with antidementia drugs on activies of daily living and behavior which is not possible without improvement in cognition.

References:
1. Gauthier S, Loft H and Cummings J (2008) Improvement in behavioural symptoms in patients with moderate to severe Alzheimer’s disease by memantine: a pooled data analysis. Int J GeriatrPsychiatry 23: 537–545.
2. Mecocci P, Bladstro¨m A and Stender K (2009) Effects of memantine on cognition in patients with moderate to severe Alzheimer’s disease: post-hoc analyses of ADAS-cog and SIB total and single-item scores from six randomized, double-blind, placebo controlled studies. Int J Geriatr Psychiatry 24: 532–538.
3. Feldman H, Gauthier S, Hecker J, Vellas B, Subbiah P and Whalen E (2001) A 24-week, randomized, double-blind study of donepezil in moderate to severe Alzheimer’s disease. Neurology 57: 613–620.

My reply, submitted as a BMJ rapid response is here

Delirium Screening

Some people have asked me to try and summarise my considerations on delirium assessment. In what follows I will also try and outline an alternative approach to the one currently being recommended across Scotland following Healthcare Improvement Scotland (HIS) Inspection visits.

1. DETECTION: I have been asked the entirely understandable question as to what approach I would advocate for detection of delirium if we were to depart from the Healthcare Improvement Scotland (HIS) mandate to screen all those 65 or over for “cognitive impairment”. Here, I shall try to make clear that my principle concern is with screening rather than with the brief rating scales themselves. These scales have a place, even if not yet fully validated. However, in my view, and that of NICE, they should be used for clarification, and for on-going assessment, of those who are determined – by professional nursing and medical assessment (including routine history and examination and collateral history) – of being at risk. It was in this sense, the patient-centred sense, that I used the word “holistic”. I apologise that I was not clearer about this in my lengthy piece, “the faltering, unfaltering steps”.

I use the word “holistic” in the general sense: time-honoured professionalism of person-centred nursing and medical care. This is the “professional excellence” that I am certain that we all support and wish to improve. I would like nurses and doctors to have training in delirium, and so provide a reasonable level of such care, ahead of deciding if a rating scale for triage is necessary. I am not aware that any RCT study has been done to compare: (1) current standard approach (which evidence demonstrates fails to detect 50-70% of delirium), with (2) brief screening tests, with (3) improved staffing levels, improved staff time and education (education, that the likes of HIS are undertaking) on delirium and cognitive disturbance?

2. THE 4AT SCREENING TEST: I was recently provided with two papers on the 4AT screening test which I now have had the chance to read closely. I had not intended commenting specifically on any one screening test as there are many that are currently being studied in the acute hospital setting. However, I thought it would be helpful to look at this study published in the journal of Age and Ageing by Bellelli et al: “Validation of the 4AT, a new instrument for rapid delirium screening: a study in 234 hospitalised older people” as it highlights some of the considerations I raised in my blog. I would suggest that the other paper, set specifically in a Stroke Unit is less generalisable in terms of HIS Improvement work, so I will make no further comment on it.

My view, in terms of being an evidence basis for Improvement Work in Scotland, that the title of this paper may be misleading. The Bellelli study only considered rapid delirium screening” whereas the 4AT test also “screens” for “cognitive impairment”. As the 4AT screening test is used for both we can only, at best, state that it has been validated for the former.

One of the four main features, following brevity of the test, is that “no special training is required”. In the Bellelli study the 4AT assessments were “performed by experienced physicians, though no specific training in the 4AT was given. Further research is needed to assess the ease of use of 4AT among other professional groups of varying levels of seniority.” Furthermore the Bellelli study “did not assess inter-rater reliability for the 4AT or the reference standard assessment” or the “clinical outcomes in relation to ‘possible delirium’ as assessed by the 4AT.” The Bellelli study was not set in A& E or hospital front-door settings. Additionally, as stated in the paper “because of insufficient power, we were not able to analyse the characteristics of misclassified (false negative and false positive) patients.” Thus we do need to be cautious in generalising the findings of this “validation” study.

I retain the view that we must also measure metrics such as patient/clinician acceptability before we can be confident for general application of any test.

The Bellelli paper concludes “future studies in larger populations and other centres should further assess its performance, including the determination of whether detection of delirium using the 4ATmay improve the clinical outcomes of patients.”

3. DEMENTIA and DELIRIUM: Screening for cognitive impairment. This has yet to be validated for the 4AT. As you may know I have concern about the delayed diagnosis of dementia. However I am also concerned about the potential for wrong diagnosis. Here, in the acute setting we have an almost intractable problem that I wonder if the 4AT can address. We will need to wait for further studies. However the incorporated AMT4 test for cognitive screening is one of the most basic (some would say “reductionist”) tests available to clinicians. How it then performs when one has delirium has not yet, to my satisfaction, been established. The Scottish Government have confirmed in a letter of response to Anne Begg, MP, that “there are no plans at present to introduce such a national screening programme for Scotland.”

I have noted that the use of screening tests (AMT4, CAM or 4AT) is being measured in many Scottish health Boards in terms of each Board’s “compliance”.

I must confirm that I have no issue with rating scales. Some are better than others. I use them all the time, to the best of my ability, in an evidenced-based way. However if used for screening or “case-finding” – though I note that Scottish Delirium Association (SDA), Older People in Acute Care (OPAC) and Healthcare Improvement Scotland (HIS) generally refer to “screening” – most public health experts would recommend that they need to be very carefully considered (as per the ten Wilson & Jungner World Health Organisation criteria). Please note the clear definitions of screening by the World Health Organisation and that this does not need to be whole (entire) population.

4. TIME: Taking delirium seriously should involve taking appropriate time. I am certain that we all agree on this. We also know the reality of staffing resources. Should we not be spelling out this shortfall to Scottish Government as part of improvement recommendations?

5. INVOLVEMENT:
The point I was making in my blog was that, for improvement work like this, we need to engage beyond clinicians and improvement staff. I know that HIS have fully engaged with those who have experienced delirium. I suggest that we also need to give all those over 65 an opportunity to give their considerations. There are of course many others, in professional disciplines across medicine and beyond acute care, who may wish to have an input. I also wonder if the Mental Welfare Commission may have a view of starting out with a screening test without any perceived need (as per HIS recommendations) for individual consent?

6. ETHICS. There are unforeseen consequences of tests that are about the person, being, sentience rather than a unitary bodily process (I have reasoned many times why taking a pulse, for example, has quite different implications to that of cognitive testing.)

One unforeseen consequence of wider cognitive screening is the heightening of fear, as expressed clearly by Dr Iona Heath (Past President RCGP) and John Sawkins (VOX). It is possible our elders may become even more fearful of hospital if they understand that they will be cognitively tested whether they agree or not. Just today it was reported that a woman who was turned down by ATOS for benefits – as based on a screening questionnaire – then took her own life. The Mental Welfare Commission have investigated this and in the report express concerns about a short-cut approach to overall and proper understanding of this woman’s medical history and life situation. This is a most extreme example but we must consider the wider effects of screening however well intentioned and reasoned by the clinical argument. For those who want to learn more I would thoroughly recommend that you might read The patient paradox by Margaret McCartney.

7. INVERSE CARE: With any screening programme there is a potential risk of unintentionally precipitating inverse care. Since mandatory screening was introduced following HIS inspection, referrals to the older adults’ liaison service in my Health Board area have risen to 230 per month and the majority of these individuals are referred on for further community assessment. The community services are already stretched. The risks are that community services may struggle to meet the need of those who need it most and that those with mild cognitive impairment are wrongly medicalsised as suffering from dementia.

8. PEER REVIEW: A recent correspondent asked that I submit my considerations for peer review in formal academic journal. It is my view that those behind improvement work on delirium in Scotland need to do this first and I am of the view that this might be an important element of improvement work before policy recommendations are embarked upon. The Clinical Standards, on which screening recommendations for delirium have been based, are 12 years old. The involvement of Healthcare Improvement Scotland in pilot work, as guided by the Scottish Delirium Association is most welcome. The limitations of other avenues of communication about this improvement work have been pointed out to me. Yet we must acknowledge that OPAC, HIS and SDA are using other avenues extensively (tweets, blogs and videos), thereby inviting responses.

To conclude, I have no major issue with the use of validated scales as a form of assessment. However I agree with NICE that evidence, and wider consideration is currently not there to support use for screening or case-finding. Yet this has become the basis of Healthcare Improvement Scotland recommendations, recommendations that have been made with the guiding support of the Scottish Delirium Association.

One and the same

In this short film I will explain to you why I have come to understand that case-finding and screening are actually one and the same.

One and the same from omphalos on Vimeo.

All around us national clinical leads and disease champions argue that early detection policies are exercises in ethical case-finding. They insist that such policies are not screening. This is important because criteria have been set for the introduction of any national “screening” programme. It appears that by calling any programme “case-finding”, these criteria can be ignored.

In this film I will briefly look at the historical development of case-finding and screening. This provides clear evidence that these terms have been consistently used one and the same. This film will argue, along with Dr James Maxwell Glover Wilson, that the ten principles that are considered necessary by the World Health Organisation for screening, should also apply to case-finding. One and the same.

As an approach, case-finding emerged in the first few years of the 1930’s: “to designate the pre-clinical stage of a tuberculous pulmonary infiltration, when it is demonstrable by x-ray examination but does not yet manifest itself clinically by symptoms or signs perceptible to the patient or by the usual methods of classical physical examination.”

The success of this case-finding approach led to its use for detection of other diseases. By 1968 the World Health Organisation had listed ten requirements necessary for the introduction of a public health screening programme. Note that this list refers to case-finding. Screening and case-finding are one and the same.

  1. The condition sought should be an important health problem.
  2. There should be an accepted treatment for patients with recognized disease.
  3. Facilities for diagnosis and treatment should be available.
  4. There should be a recognizable latent or early symptomatic stage.
  5. There should be a suitable test or examination.
  6. The test should be acceptable to the population.
  7. The natural history of the condition, including development from latent to declared disease, should be adequately understood.
  8. There should be an agreed policy on whom to treat as patients.
  9. The cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole.
  10. Case-finding should be a continuing process and not a ‘once and for all’ project.

Into the next decade and case-finding moved into many other areas.

In 1970 diabetes was considered as one area that might benefit:
“Many are truly asymptomatic, even on direct questioning. Despite this, diagnosis of the diabetes is not usually difficult, for random or post-glucose blood sugar levels are sufficiently high to allow of no doubt. Nevertheless, when screening by blood sugar level is employed for case finding, diagnosis becomes more problematic.”

As the 1970’s progressed case-finding of hypertension became a priority.

Hypertension in general practice
21 April 1984
“SIR, I support Dr John Coope’s comments on the lamentable state of management of patients with hypertension, benefits can be achieved from treatment. The practical answer surely lies in case finding.”

Into the 1980s and case-finding methods are underway to detect dementia:
Do general practitioners miss dementia in elderly patients?
Oct 1988

Some of the difficulties of this were discussed at this time and reveal that the Wilson & Junger principles for screening were considered necessary:

“We have made some progress with the problem of assessing mild dementia. However, there are as yet no widely accepted criteria for mild dementia, nor are there any clinically useful biological markers. Consequently, whether normal ageing, benign senescent forgetfulness and mild dementia lie on a continuum, or whether mild dementia is categorically distinct, is uncertain.

Thus, prospective longitudinal studies using a range of reasonably standardised diagnostic criteria are imperative, as they may show which of the existing criteria most effectively distinguish those cases which progress from those which remain stable.”

Those who know me and my writings will realise that it was with the early diagnosis of dementia where my interest first started in case-finding and screening, one and the same thing. It was clear to me that early diagnosis of dementia could not just side-step the ten principles as established by the World Health Organisation. However it took the support of doctors like Dr McCartney, Heath, Brunet and Cosgrove (the Grassroot doctors) to reason why a timely approach to the diagnosis of dementia would be a better, and less harmful approach than case-finding or screening, one and the same.

The UK National Screening Committee have been approached by policy advisors to tabulate similarities and differences between screening and case-finding. Having looked at these carefully it is clear to me that the majority of differences are in fact interpretational and demonstrate that case-finding has been, in recent years, wrongly separated from screening. The main cost of this is that the ten principles need not to be followed.

For example with screening one is generally invited and formal information of benefits and harms are shared. This generally does not happen with case-finding.

For example with screening there is generally formal quality assurance whilst with case-finding this is generally not so.

Time to finish but first let me dispel a myth. It has been argued that for case-finding one has already “symptoms” but with screening generally one does not. This is a false divide. Symptoms are not all or nothing and may or may not be experienced. Dr Wilson and Jungner made no distinction here and the World Health Organisation agreed.

Screening and case-finding are one and the same thing.

The faltering, unfaltering steps

INTRODUCTION: “Sensitive to the faltering steps of age”[1]
In what follows I will attempt to explore many of the issues around the experience of confusion in those people 65 years or older (most scientific journals refer to this age group as “elderly people”) admitted to acute hospitals. In the medical world this is now generally termed delirium. Delirium is an acute disorder of attention and cognition that is common, serious, costly, under-recognised, and often fatal. This is therefore a most serious matter. Yet the issues surrounding delirium are many and complex and far more difficult than this simple one word term may first suggest.

And slowly we go down.  And slowly we go down.
And slowly we go up. And slowly we go up.
The faltering, unfaltering steps[2]

two

With delirium, I think all involved would agree that we are at the starting steps of understanding. The title of this essay – The faltering, unfaltering steps – comes from a poem by Scotland’s Machar, Edwin Morgan.2 I deliberately chose this as the title as it occurred to me that it reminds us that scientific understanding generally comes in steps that may need to be climbed up or down, and generally many times, before the best understanding is reached. The title, for me also suggests that our “elderly” should not be collectively understood for their “faltering”.

three

Before I move on to explain today’s understandings and approaches to delirium, I should point out that apart from Edwin Morgan, I include one other Literary giant to highlight the not so simply medico-biological considerations that I would argue should be part of our understanding of delirium. That other writer is Gabriel García Márquez and the work of his that I will cite is Love in the time of cholera. Whilst I am not at all like the character Florentino Ariza in this novel, I do share his sensitivity.1

one

I have separated what follows into three steps. Of course there are many more than three but I am trying to avoid faltering.

In the INTRODUCTION I will try to cover what is today meant by delirium and why this is a condition that vitally matters to us all.

  1. In the first section – “SIMPLY” COMPLEX – (the first step) I shall explore current approaches to delirium assessment.
  2. In the second section – THE ETHICAL MANAGEMENT OF FORGETFULNESS – I will outline what I think may be missing in current approach to delirium: namely considerations of consent and the determination to screen all those admitted to hospital who are 65 years or over.
  3. In the third section – WHAT IS REQUIRED NOW – (for now the last step) I borrow the words of Robert Francis QC61 to offer some personal considerations as to how we may further improve the assessment and care of those in hospital who may be confused and thus most vulnerable.

What is Delirium?
Delirium (sometimes called ‘acute confusional state’) is a common clinical syndrome characterised by disturbed consciousness, cognitive function or perception, which has an acute onset and fluctuating course. It is a serious condition that is associated with poor outcomes. However, it can be prevented and treated if dealt with urgently.5

Although a single factor can lead to delirium, usually delirium is multi-factorial in elderly people. The multi-factorial model of the cause of delirium has been well validated and widely accepted[3]

Why focus on delirium? [4]
Older people and people with dementia, severe illness or injury such as a hip fracture are more at risk of delirium. The prevalence of delirium in people on medical wards in hospital is about 20% to 30%, and 10% to 50% of people having surgery develop delirium. Reporting of delirium is poor in the United Kingdom, indicating that awareness and reporting procedures need to be improved.

People who develop delirium may: need to stay longer in hospital or in critical care; have an increased incidence of dementia; have more hospital-acquired complications, such as falls and pressure sores; be more likely to need to be admitted to long-term care if they are in hospital; be more likely to die.[5]

“Because patients discharged home from the emergency department with unidentified delirium have 6-month mortality rates almost 3-fold greater than their counterparts in whom delirium is detected, unrecognized delirium in the acute care setting presents a major health challenge to older adults.”[6]

Delirium and Improvement work (in Scotland)
In 2011, the Cabinet Secretary for Health and Wellbeing announced that Healthcare Improvement Scotland would carry out a programme of inspections to provide assurance that the care of older people in acute hospitals is of a high standard. In launching the programme of work, the Cabinet Secretary said:

“Quality, compassionate care for older people that protects their dignity and independence, is one of the most sacred duties of any civilised society. It is something I believe we generally do well – but that is not good enough. We must do it well for every older person on every occasion, in care homes and in hospitals.”[7]

Inspections began early in 2012 and by the end of this month (March 2014) Healthcare Improvement Scotland will have carried out 18 announced and 6 unannounced inspections. Healthcare Improvement Scotland was asked to carry out these inspections because of its experience inspecting acute hospitals throughout NHS Scotland. The aim of these inspections was to provide assurance that the care of older people in acute hospitals was of a high standard and to encourage improvement where it was needed. The Inspection process (see later) includes a number of equally important areas, but for the purpose of this paper, I am concentrating on the following:

  • that the Inspection process would “put the patient first” and would “focus on ensuring older people are treated with the respect, compassion, dignity and care that they deserve”[8]
  • dementia and cognitive impairment

Healthcare Improvement Scotland states explicitly that as an NHS organisation that it is committed to equality:” We have assessed the inspection function for likely impact on equality protected characteristics as defined by age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation (Equality Act 2010).”[9]

(1) “Simply” complex
“It’s a complex issue” Penny Bond, Team Leader, Acute Hospital Inspections (Healthcare Improvement Scotland)[10]

As Professor Alistair MacLullich has described, for delirium we have all struggled with what he terms “terminological chaos” in that we have, across the United Kingdom, and indeed world-wide, many clinical expressions used as alternative ways of recording delirium (see table 1 below). Professor MacLullich is absolutely correct that this condition is ill-defined” and that this is “confusing.” Across Europe and the United States of   America, consensus has grown that such a range of terminologies is not helpful and thus why Professor MacLullich has suggested most strongly that it is “best to use the term delirium” [11]

TABLE 1:

“acute confusional state” “toxic psychosis”
“a bit muddled” “acute brain failure”
“acute confusion” “ICU psychosis”
“not themselves today” “Organic brain syndrome”
“connfusion” “a bit knocked off”
“post-operative psychosis” “cerebral insufficiency’“
“agitation” “vague”
“metabolic encephalopathy” “acute befuddlement”
“non-compliance with examination” “poor historian”

In Love in the time of cholera, Lorenzo Daza, states that “the only thing worse than bad health is a bad name.”1  I have to admit that I am not sure what the best term is for acute confusion, perhaps because it is such a complex and variable condition. I do though agree that we need to avoid loose language regarding a most serious condition/state of being. In Love in the time of cholera the word delirium is used in a context entirely outwith the medical frame: p69, “delirious with joy”; p104, “delirious with hope”; p298 “deliriums of passion”1 I am fully of the appreciation that medical delirium is a very serious state that can cause much suffering. It can often contribute to death. I raise other contextual and cultural understandings of the word delirium to remind us that this is a wide-ranging mental state (for all its seriousness) that we have struggled to define. It is important to remember that delirium, even in its medical form, is a clinical presentation with a multiplicity of potential causes, not a disease in its own right. The high mortality associated with delirium is a consequence of multiple factors including both ageing and disease.

The use of the words delirium throughout Love in the time of cholera no doubt reflects an underlying theme that the novel explores: that emotion, circumstances, life factors in a diverse yet individual way can mimic a medical condition in their presentation. In the case of this book, that emotion was of course the pain and the confusion of love that Florentino Ariza had for Fermina Daza.

“. . . and his mother was terrified because his condition did not resemble the turmoil of love so much as the devastation of cholera”1  

(a) The tools of their tools[12]
The title of this section is from a quotation by the writer and philosopher Henry David Thorea who suggested that “Men have become the tools of their tools.”

As a practising NHS psychiatrist for older adults I use rating scales every working day and I generally find them a useful way of contributing to my overall approach which seeks to be as holistic as possible. However, in using rating scales I have come to the scientific and philosophical conclusion that rating scales have limitations and that some rating scales are more scientifically valid than others.

In this section (part a) I shall briefly explore rating scales for delirium as currently being recommended in delirium assessments in Scotland’s acute hospitals. In the section that follows (part b) I shall then consider the current policy that makes use of these tests for mandatory screening of every adult 65 years and over to NHS acute care.

The 4AT test is a “new screening tool for delirium and cognitive impairment”, authored by Prof Alasdair MacLullich, Dr Tracy Ryan and Dr Helen Cash of the University of Edinburgh and NHS Lothian.[13] This test incorporates the AMT4, “a validated very brief screening tool for general cognitive impairment.”14 The 4AT test benefits from (1) “brevity” (the authors state that it takes less than 2 minutes to complete), and (2) “that no special training required” and finally (3) that it “incorporates general cognitive screening”.14

The authors of the 4AT test confirm that this screening test “underwent several waves of piloting before reaching the form it is in now” and that “formal validation studies are in progress”.13 However I remain uncertain whether the aim of this test is the detection of delirium, or of cognitive impairment.

At the end of last year, one of the nurses in the community team of which I am a part handed over to me the Journal of Mental Health Nursing and suggested that I read an article by Grant King who is a lecturer in mental health nursing with the University of Dundee. In this paper Grant King described a personal experience which made him consider a professional situation in a new way.16   In Grant’s paper he described his experience of writing about the MMSE[14] (a rating scale of cognitive function that is now copyright) as an undergraduate student and then witnessing his father being tested with this by a healthcare worker (in this case a doctor)

Grant King begins his paper thus16:

“An axe can be a wonderful tool. It can be used for many activities but is probably best known through history and across the globe as a tool for felling trees and chopping wood. The wood, in turn, can be used to sustain life with a hearty fire providing essential heat and light.”

“Indeed, an axe can be a wonderful tool. An axe can also be a terrible weapon.”

The paper then goes on to give the narrative of his father’s experience of being tested with the MMSE and the thoughts and emotions that this stirred in his father and for Grant. At the end of this real-world account, Grant confirmed “Though it may not seem like it, I have no issue with the use and utility of the Mini Mental State Examination.”16

Grant then confirmed what he was really trying to get across16:

“I just want to publicly remember that these clinical tools, as ‘useful’ as they may be ‘to better inform care planning’ are potentially so powerful in changing lives and families that the hands that handle their haft need to be well trained and skilled in their wielding.”

Grant’s experience of his father being tested with the MMSE, left him reflectively wondering16:

  • “Do we ever really take enough time to genuinely reflect on the potential ramifications of even supposedly routine tests upon our clients and their families?”
  • “Can we fully appreciate the widest impact of our interventions until we encounter them at close proximity from the other side?”
  • As mental health nurses let us be mindful of the power in our hands, and the sensitivity and compassion required, as we wield the tools of our trade.”[15]

The following words are those of Consultant Geriatrician, Dr Graham Ellis, who is working with Healthcare Improvement Scotland on improving care in acute hospitals (here he is talking about the “frailty triage screening tool”) but the words seem to be equally applicable to the other flagship improvement, mandatory cognitive screening for all those 65 or over who enter acute hospitals in Scotland:

“The sooner we are able to identify at the front door of the hospital at the very point that they arrive at the hospital we need some simple measure, some simple tool that identifies that this patient needs to be handled differently. . . the whole drive of the improvement work is to identify a simple way, a simple tool something that will capture that as early as possible and as consistently as possible”[16]

It occurs to me, and I will return to this in more detail later, that this is a big ask of a “simple” tool that is to “screen” and then “triage” our older generation. The risk is that time-honoured holistic nursing and medical assessments are replaced by brief, un-validated screening tests and that, as a consequence, “treating people with dignity and respect”9  may actually be less likely to happen for our elders at a time of great vulnerability.

(b) On the edge[17]
I sometimes wonder, and I speak here most generally, that our respected elders, the older generations of society, are left on the edge of involvement in decisions that will affect them and that are being determined by policy makers who tend to be in the middle period of their life. In establishing policies that will affect our elders we need to remember that they have experience that we, the policy makers, do not have.

In the NHS area that I work the local policy for screening for delirium is that it is currently “mandatory”[18] for all those 65 years and over admitted to the acute hospital to be screened with the AMT4 test[19]  and/or CAM test[20].

five

Healthcare Improvement Scotland has recently published Identification and Immediate Management of Delirium, version 2.[21] As I am not involved with this improvement work, I have been faltering in my understanding of this initiative. I am not clear on at least the following questions: which age ranges are these interventions aimed at and are they for testing or national implementation?

However we can be absolutely clear what Healthcare Improvement Scotland have recommended to specific NHS Boards following inspection visits to their acute hospitals:

For Raigmore Hospital, Inverness:
“We found that further improvement is required in the following areas. There is no routine screening for cognitive impairment taking place when older patients are admitted to hospital.”[22]

For St John’s Hospital, Livingstone:
“We found that further improvement is required in the following areas. Screening for cognitive impairment was not routinely carried out in patients over 65 years when they were admitted to hospital.”[23]

Western Isles Hospital, Stornoway:
“There is no routine screening for cognitive impairment taking place when older patients are admitted to hospital.”[24]

I was made aware of the report of Healthcare Improvement Scotland’s Inspection of Forth Valley Royal Hospital (FVRH) by reading the positive comments by Professor Angela Wallace, Director of Nursing, NHS Forth Valley:

We welcome this report which highlights many areas of good practice in the acute hospital care provided to older people in NHS Forth Valley.

It recognises our commitment to maintain the dignity of patients and ensure they are cared for with compassion and respect. Inspectors also commented on the warm, caring and meaningful way which our staff interact with patients and the strong leadership provided by senior nurses in our wards.

Independent feedback from patients about the care and help they received while in hospital was also very positive.

Work is already underway to address the report recommendations and we expect these to be completed within the next few months.”[25]

I then took the opportunity of reading the full Inspection Report.[26] Having read this report, I wrote to the Chief Inspector, Ian Smith to say:

“It was most encouraging to see the areas of strength as noted by your inspection team when visiting NHS Forth Valley in relation to the care provided to older people in acute hospitals. It was especially welcome to note that the inspection team found ‘warm, caring and meaningful interactions between staff and patients.’”28

In my letter to Healthcare Improvement Scotland I also shared the basis of my concern:

“In your summary of your visit Healthcare Improvement Scotland recommended that further improvement was required in ‘screening for cognitive impairment’ that ‘was not consistently carried out in patients over 65 years when admitted to hospital’.”[27]

My letter continued:

“As a Consultant in Old Age Psychiatry I have always believed that our elderly are particularly vulnerable in hospital and that impaired cognition can add to this. The approach to this matter is important and should, I would argue, follow the principles of good medical and nursing practice which has a fundamental basis in holistic assessment. Isolated ‘screening tests’ such as the mandatory use of the AMT4 test for all those 65 or over in Forth Valley Royal Hospital take away from holistic professionalism and risk creating an artificial assessment that does not reflect the true overall presentation.”

“If we are talking about ‘screening tests’ it is important we follow the systematic evidence-base and ethical analysis of the impact of isolated tests. As far as I know has no such meta-analysis evidence basis and what little research has been done on this test shows it lacks in both specificity and sensitivity. This is actually true for a number of the tests currently being recommended in a pathway by the Scottish Delirium Association and I strongly believe that they should not be used in isolation.”

“I am reminded of the recent controversy over the Liverpool Care Pathway[28]. No one had any argument with the aims behind this, nor the elements within it. However, when it was applied inappropriately on a background of inadequate training and understanding, and with poor communication with families, patients undoubtedly suffered. This is why I believe a professional holistic assessment is so important.”

I concluded my letter to Healthcare Improvement Scotland asking if they might give some consideration and comments of the points that I had raised.

I later phoned them and had a phone discussion with Ian Smith, Senior Inspector. Following our conversation, I asked Ian Smith if could confirm what we had shared in our discussion in writing:

“Our discussion regarding the use of screening/assessment for cognitive impairment was an interesting one, however, as we discussed we are very much guided by the Older People in Acute Standards (2002), which state that those patients over 65 years should be screened for cognitive impairment.”[29] Ian Smith, Senior Inspector, went on to confirm that he was “not qualified to be able to comment on the merits of cognitive screening and evidence surrounding it. As such, I have copied this letter to Healthcare Improvement Scotland’s Medical Director, Dr Brian Robson who might be better able to discuss these issues with you.”30

Following this a teleconference was arranged between myself and three staff of Healthcare Improvement Scotland, including Dr Brian Robson. It was clear to me from the outset that my genuine questions about the evidence behind the improvement work led by Healthcare Improvement Scotland were not welcome. It appeared that the “Inspectors” did themselves not like any scrutiny of their national recommendations for acute care of our elders. Dr Robson sent a letter that followed up the teleconference:

“Inspection of Older People’s service and use of ‘Screening Tools’
The Clinical Standards for Older People in Acute Care (2002) are the extant standards and are the basis of our current inspection process. These standards are scheduled to be reviewed in 2014. Within that review there will be consideration of the evidence base for assessing patients for cognitive impairment and indeed the evidence base and best practice around ‘screening tools’ if that is relevant.”[30]

I replied to this letter, as follows:

“I am writing to re-confirm that my view is that mandatory cognitive screening for those 65 or over has neither a scientific nor ethical basis (whatever the setting of such screening). I am fully aware that HIS follow the Guidance of the 2002 Care Standards.”[31]

As Dr Robson confirmed, the Clinical Standards for Older People in Acute Care were published in 2002 and are now 12 years old. These standards were most clearly enshrined with the following principles

• are evidence-based and have been developed and finalised in consultation with many people across Scotland

• regularly reviewed and revised to make sure they remain relevant and up-to-date.[32]

These standards also confirmed an “overarching principle that there should be no discrimination on the basis of age, but that specific needs at different stages of life need to be recognised” and went on to state that “for this reason, they did not seek to identify a specific age group, but instead emphasises the need for appropriate and individual multidisciplinary assessment and care.”35

On the homepage film for Healthcare Improvement Scotland, Brian Robson states 18

“Healthcare Improvement Scotland works with clinicians who are working with patients every single day. What we do is help those clinicians work with us across all areas …. Such as working on our improvement work in hospitals. It’s about making sure clinicians are involved across the full range of activities of Healthcare Improvement Scotland[33]

“We’ve been listening to the voices of clinicians and healthcare professionals like you. We understand that you want to be at the very heart of healthcare improvement and not at the edges.”18

In his letter to me Dr Robson, Executive Clinical Director for Healthcare Improvement Scotland stated: “You set out your enthusiasm to be personally involved in the design and governance of the national programme and referenced our commitment in our Clinical Engagement Strategy to involve clinicians in our work. I attempted to emphasise that this commitment does not confer an individual’s ‘right’ to be included in such groups.”33  He referred me back to local mechanisms of engagement.

The Francis Enquiry concluded that NHS culture was struggling to allow voices of concern to come forward and that improvement culture needs to take great care not to exclude or isolate staff or voices who express concerns about patient care.  The Medical Director for NHS Forth Valley, Dr Peter Murdoch has undertaken consultations across the organisation in reviewing the Francis Enquiry Report and came to the conclusion that “local context and action was essential”[34] but that NHS Forth Valley “were already beginning to see things changing.”[35]

What is required now

(click anywhere on the picture above to play film)

Just last week, NHS Forth Valley had a “Delirium and Dementia Study Day” with involvement from Healthcare Improvement Scotland amongst others. Unfortunately I had not been personally made aware of, or invited to, this Study Day. I expressed my disappointment as this had not been the first instance of such “forgetfulness” on the part of the organisers.[36]

Healthcare Improvement Scotland has a rhetoric of engagement but this has not been my experience. I wrote to the Cabinet Secretary for Health and Wellbeing about this and the short reply, on his behalf, was as follows:

“Mr Neil is aware that you have also raised these issues directly with Healthcare Improvement Scotland and thanks you for your continued interest in these matters.”[37]

(2) “The ethical management of forgetfulness”[38]

(a) Consent
“Obtaining consent should be an ethical duty first and foremost, one central to respecting the autonomy and dignity of patients”[39]

Informed consent is crucial for patients but it is not truly informed unless they are given full, reliable, evidence based information about the treatment alternatives and the likely benefits, harms, and uncertainties of each of these. Obviously, in the case of cognitive screening there are potential difficulties here in that a patient’s capacity to consent may be impaired.

It is my view that ethically we have a duty to respect individual autonomy, and no screening, even for cognitive impairment, should over-ride this human right. Even in our belief in a procedure’s value, or out of a concern not to worry the patient unduly, we cannot side-step asking for consent.43

The issue for us—the crucial one around older people, in particular—is the culture of care.”[40] Dr Denise Coia

Availability of time in casualty departments for example may be another barrier to seeking consent for testing. “Hurry is the devil,” wrote William Osler. In my biased view rushing consent (or establishing that consent may not be possible) should be avoided in the same way that a medical procedure should not be rushed.  On this, Leon Eisenberg has offered his thoughts:

“… we can change this mindset and view obtaining consent as an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients, then we will have taken a major step .… we must take the time to demonstrate to our students how the information the patient needs to have can be presented clearly and more than once, in order that the doctor can support the patient’s right to choose among alternatives.”[41] Leon Eisenberg

When Healthcare Improvement Scotland gave evidence to the Health Committee last winter, Drew Smith (Glasgow) (Lab) opened with the comment below. Respect and dignity can be considered in so many ways, but here I wonder if Drew Smith is expressing, what sometimes seems to me as the prevailing view, that cognitive testing is a necessary requirement for both respect and dignity:

“When HIS was in Glasgow last year and examined Glasgow royal infirmary, its report said that there was a consistent failure to respect the dignity of older people. Two examples of that are the failure to assess for cognitive impairment and dementia, and specific instances of, for example, people being showered in cubicles without screens, which I think Dr Coia would describe as being ‘unforgivable’ or ‘unacceptable’.”44

Here is a different take on this:
“It confuses me why signed consent for minor surgical interventions yet often not for things with devastating consequences”[42]

The NICE guideline on Delirium starts with person-centred care[43]
“Treatment and care should take into account people’s needs and preferences. People with delirium or at risk of delirium should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If patients do not have the capacity to make decisions, healthcare professionals should follow the relevant national guidance on this”47

Balansnummer

(click anywhere on the picture above to play film)

(b) Screening
Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or a condition. Many screening programmes aim to reduce death from a disease by early detection. Screening has important ethical differences from clinical practice as it targets apparently healthy people. However, there are risks involved and screening cannot guarantee protection against a disease or condition. In any screening programme, there are false negatives (wrongly reported as not having the condition) and false positive results (wrongly reported as having the condition.)

Screening assessment tool: The examination of people without symptoms to detect unsuspected disease or problems.”[44]

In the 2002 Care Standards, upon which Healthcare Improvement Scotland base their inspection visits, in section 2a, it states that for “older people being treated in A&E or admitted – even briefly – for care are assessed for cognitive impairment, functional problems and existing home support” and that it is “essential” that a “brief screening assessment tool is in use and documents cognition.”[45] It also states, in Standard 8that all patients are enabled to be partners in making decisions about their own care and the extent of patient involvement in making decisions about their care is regularly and systematically monitored to ensure its effectiveness”[46]

Healthcare Improvement Scotland have confirmed that the approach that they take to screening, follows, in addition the 2002 Care Standards “we will develop national standards and/or indicators for NHSScotland that reflect UK National Screening Committee standards for new and existing programmes.”[47]

I have had previous, most helpful discussions with the UK National Screening Committee (UKNSC) regarding the Dementia DES in NHS England. I therefore wrote to Dr Hugh Davis to ask about their involvement with Healthcare Improvement Scotland:

“Thanks for your enquiry regarding Healthcare Improvement Scotland’s planning to undertake cognitive screening. I must admit I haven’t heard of such a plan for screening up in Scotland.  I wonder if you have any documents or resources that you could send or point me in the direction of that detail Healthcare Improvement Scotland’s plans so that I can understand more about the exact nature of what they’re planning on introducing?”[48]

The current position based on Inspection visits to nearly all Scotland’s Acute Hospitals, is reflected in this recent minute by Healthcare Improvement Scotland “In five hospitals inspected, we found that older people were not always being screened for cognitive impairment on admission to hospital. In the sixth hospital, where we carried out a follow-up inspection, we identified an improvement in the number of patients being screened for cognitive impairment.”[49]

It is important to note here that the NICE Guideline on Delirium (there is no SIGN Guideline equivalent) does NOT advocate screening. In fact the word screening never appears once in the whole document.

Professor Alistair MacLullich, Secretary of the Scottish Delirium Association, in a film on improvement work that has just been posted on HIS website states: “Healthcare Improvement Scotland have greatly accelerated the process through encouraging the use of standardised measures such as the 4AT and I think very importantly they are engaging with various health boards and practitioners to see which methods work so this is an evolving process. The fact is that even though we have had a lot of tools available for delirium detection it hasn’t really been implemented anywhere in the world until very recently. The crucial difference is that we are engaging with clinicians and practitioners in their organisations the best way of dealing with this.”[50]

“…. the product of the collaboration between the SDA and other interested clinicians and HIS and we are now seeing the results in terms of very positive reactions from all the different test sites from the clinicians who are using the tools right the way up to the Chief Executives.”55

The 4AT test13 is “a new screening tool for delirium and cognitive impairment” and can be “administered by any healthcare professional without the need for training.”

[1] ALERTNESS

[2] AMT4 – Age, date of birth, place (name of the hospital or building), current year.

[3] ATTENTION – Ask the patient: “Please tell me the months of the year in backwards order, starting at December.”

[4] ACUTE CHANGE OR FLUCTUATING COURSE

Professor Emma Reynish, Chair of the British Geriatrics Society Dementia and Similar Disorders, advocates mandatory cognitive screening “It is vital that all older people admitted to hospital receive an assessment of their memory function as part of a holistic evaluation of their needs so that they can be managed and treated appropriately. Professor Reynish also states that “Assessment [with screening tools such as the 4AT] also leads to the identification of people with dementia. This is an essential part of how we can improve dementia diagnosis rates.” [51]

“Furthermore, assessment of memory identifies all individuals with cognitive impairment (whether this is delirium, known dementia, or symptoms of dementia but no diagnosis) so that individual care plans in acute hospitals can be designed to meet people’s specific needs. This leads to better communication, nutrition and orientation and makes it easier for health professionals to work in partnership with a patient’s caregivers.”56

John Sawkins, wrote to me with important thoughts that Professor Reynish has not considered:
“As a concerned citizen who reached the age of 65 in September 2013, I must confess that I am alarmed by the decision to routinely screen all those aged 65 and above for cognitive impairment and delirium. How much distress and fear do you think this engenders in a section of the population already wary of the euthanasia agenda, as well as the widely publicised abuses of the ‘Liverpool Care Pathway’? How on Earth can this approach fit in with the maxim, ‘Nothing about me without me’?”

John Sawkins continued: “The A4T test, freely downloadable and available to be administered by virtually any professional could have serious unintended consequences for the patient upon whom it is used: the surrender of one’s driving licence, for a start. But, as I clearly observed at a recent gathering to look at the impact of welfare changes on services, despite advocating partnership working and consultation with the service-user, professionals still retain the view that they, and they alone, know what is in the best interests of the patient.”

Professor MacLullich confirms that the 4AT screening tool he developed is a “screening instrument designed for rapid and sensitive initial assessment of cognitive impairment and delirium.”58 This being one of the tools advocated for mandatory screening in all Scottish Acute Hospitals by Healthcare Improvement Scotland. Yet the Clinical Executive Director for Healthcare Improvement Scotland stated in his letter to me that improvement work was based on “early identification and appropriate management of delirium. It is not focussed on the diagnosis of dementia.”33 As a result of one of the recent pilots in an Orthopaedic ward, one of the recommendations being made is that given “challenges with CAMthat screening should “move to the 4AT”[52]

A recently published meta-analysis by LaMantia et al has looked at screening tools for confusion in A & E settings. The study concluded that “despite there being a need to identify delirium in A & E geriatric patients, there are no validated instruments and there is a paucity of data on this topic.”6

Specifically on the CAM test which is a mandatory test for all patients over 65 admitted to NHS Forth valley, the LaMantia study concludes: “a variety of tools have been used to identify delirium among older adults in A & E research studies, though to date only one, the CAM, has undergone initial validation, albeit in relatively small study populations and in studies that did not strictly follow the Standards for the Reporting of Diagnostic Accuracy criteria.”6

Ultimately the LaMantia meta-analysis concludes that the best approach, based on current evidence, is that “patients who are at high risk of poor outcomes from the sequelae of delirium should be targeted for study within research” 6 This is the same conclusion as in the NICE Guidelines on delirium and quite different from the mandatory screening that is a key part of the Healthcare Improvement Scotland recommendations.

The Scottish Delirium Association was formed in 2012. It is formed by a group of healthcare workers, all practising doctors and nurses in care for the elderly. There does not appear to be any wider representation such as public health, ethics, or indeed any of our elder citizens themselves.

The Scottish Delirium Association have developed two pathways for delirium; (1) the Delirium Management Summary Pathway, and (2) the Comprehensive Delirium Pathway. These pathways aim to address the lack of understanding on severity delirium, the variability in approach to clinical management, the Low rates of detection and the adverse outcomes of delirium. These are goals that we would all surely support. However I am less confident than the Chair of the Scottish Delirium Association that we have sufficient evidence that these “pathways improves all” these vital areas.[53]And we certainly do not know if there may be unintended consequences of pathways that ignore consent and that place reductionist screening tests before any holistic assessment or even assessment of risk. With any screening test there is risk of false-positive and false-negative results.

A recent view expressed on social media: “Mandatory scares me, especially when the quality of that screening could be very questionable.”[54]

Whilst Healthcare Improvement Scotland have not waited for fully validated and ethically considered studies to implement mandatory cognitive screening, those 65 and over will have to wait as Healthcare Improvement Scotland have confirmed that “our revised inspection methodology is due to be published shortly.” 53

With cognitive screening we are very much dealing with the person, sentience, being and who we are. This, in my view cannot be considered as the equivalent of “routine” examinations such as taking pulse or blood-pressure. Though even for these we should be seeking consent and not simply taking assent as granted.

To conclude, I would prefer that cognitive testing is not mandatory and used when there is clinical suspicion of delirium following a careful and holistic assessment by healthcare staff trained in medicine for the elderly.

I am not alone in this view. Here is what Dr Iona Heath suggests:
“Once again let’s go for civil disobedience – I shall refuse to be screened!!”[55]

(3) “What is required now”[56]
Robert Francis QC, when addressing the summary conclusions of his report on the failings of Mid-Staffordshre NHS Foundation Trust, began “what is required now.”[57] In this concluding section I will offer some considerations on practical and ethical ways forward in seeking to improve the holistic approach to the care of our elders more generally.

(a) Hole Ousia[58]
As a writer I have collected my thoughts here in my “blog” called Hole Ousia.63 This Ancient Greek expression translates approximately as “whole being”. My view is that at the heart of a liberal education is the notion that human beings need to return to science that is more broad in its inclusion this is an idea which ought to unite scientists, literary intellectuals and artists alike.

Healthcare Improvement Scotland is a developing organisation that has such well-intentioned aims that they could surely only be welcomed across our nation. However it is a small organisation which is aware of the difficulties that it faces in being responsible for such high national ideals. This is why the Executive Clinical Director is rightly so passionate about seeking wider engagement with healthcare staff (and I hope also) patients.

This is described by Dr Brian Robson Executive Clinical Director of Healthcare Improvement Scotland when giving evidence to the Scottish Parliament last year:

“We have a small core clinical team in the organisation with a chief pharmacist, a chief nurse, midwife and allied health professional and a consultant in public health medicine and me. Our engagement strategy means that we bring in national clinical leads from the service experts in their field to work with us. At any one time, 20 or 30 of those will be working with us each session to help us to support our improvement programmes. Beyond that, we have access to thousands of clinical staff across the NHS in Scotland and the United Kingdom as well as internationally, to help us with our work. We do not have a large employed clinical staff, but clinical staff and clinical assurance run across all the programmes.”44  

Robbie Pearson Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland “However, what is fundamental is not the raw numbers but the skills, experience, capability and competence that we bring to our inspection work. Again, that emphasises the importance of the additional expertise that we may bring in from the service. As Dr Robson mentioned earlier in the context of our clinical engagement strategy, we need to consider how we can use the breadth of experience, skills and expertise that are out there to support us in our work as a relatively small organisation.”44

You will recall that we have been told that the improvement work undertaken by Healthcare Improvement Scotland, followed the guidance of the Clinical Standards for Acute Care35. It is interesting then, at Parliament last year, Ian Smith, Senior Inspector, Healthcare Improvement Scotland, stated that “for the inspections of acute care services for older people, we had no baseline from which to work because the inspections were new.”44

Duncan McNeil (Lab) the Convener of the Parliamentary Health Committee followed up this statement by Senior Inspector Ian Smith and asked Healthcare Improvement Scotland: “I understand that a review of the methodology of inspections is going on. When the committee reported on its inquiry into regulation of care of older people, we recommended that there be a review of the national care standards for older people, which were then 10 years old. How is that review progressing and what is your role in it? When can we expect to see the fruits of your work and that of the Scottish Government, which accepted our recommendation?”44

Dr Coia, Chair of Healthcare Improvement Scotland, offered a detailed response, but the Convener was still uncertain and so perhaps a little bluntly asked again: “has the review process begun formally?”44

Dr Coia replied “it has not yet begun.”44

This parliamentary committee met last year, and since then a review, chaired by Pam Whittle, CBE, has been published. This report is entitled National standards, guidance and best practice. As used as basis for Inspections and it was published in November 2013. [59]

The Whittle Report sets out that “the following national standards, guidance and best practice are used to underpin the inspection of the care provided to older people in acute care.”8  This includes 10 separate guidance documents (see table 2). I have read carefully the Whittle Report and I think it is important to confirm what this report does not actually make clear. This being that there has yet been no further update on the 2002 Clinical Standards for Older People in Acute Care which still form the basis for the national standards for inspection of acute care for older adults in Scotland.

It is worth noting that the Whittle Report does not mention NICE Clinical Guideline 103: Delirium.5 It should also be noted that the Whittle Report confirms that SIGN Guideline 86 – Management of Patients with Dementia is one of the guidelines it follows. This guideline, by SIGN’s own timetable, is now four years out of date and has recently been rated in a meta-analysis of 12 National Guidelines on dementia as the second poorest in terms of ethical considerations.[60] I published on-line in the BMJ a letter where I considered the possible reasons why ethical matters were generally not part of SIGN guidelines on dementia: “this appears to confirm an imbalance between the consideration of bio-medical aspects of dementia and those which focus on more general aspects of care. Just because the latter are harder to measure does not make them any less important.”[61]

Table 2; The Whittle recommendations are “underpinned” by the following:

  1. Adults with Incapacity (Scotland) Act 2000 Part 5 – Medical treatment and research
  2. Best Practice Statement for Prevention and Management of Pressure Ulcers (NHS Quality Improvement Scotland, March 2009)
  3. Clinical Standards for Food, Fluid and Nutritional Care in Hospitals (NHS Quality Improvement Scotland, September 2003)
  4. Dementia: decisions for dignity (Mental Welfare Commission, March 2011)
  5. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Integrated Adult Policy – Decision Making and Communication (Scottish Government, May 2010)
  6. Health Department Letter (HDL) (2007)13: Delivery Framework for Adult Rehabilitation – Prevention of Falls in Older People (Scottish Executive, February 2007)
  7. National Standards for Clinical Governance and Risk Management (NHS Quality Improvement Scotland, October 2005)
  8. Scottish Intercollegiate Guideline Network (SIGN) Guideline 86 – Management of Patients with Dementia (SIGN, February 2006)
  9. SIGN Guideline 111 – Management of Hip Fracture in Older People (SIGN, June 2009)
  10. Standards of Care for Dementia in Scotland (Scottish Government, June 2011)

As confirmed already the Clinical Standards for Acute Care35 are now twelve years old despite the enshrined promise that they would be “regularly reviewed and revised to make sure they remain relevant and up-to-date.”35  I am also of the understanding that these 12 year old Clinical Standards were not as broadly inclusive as is suggested: “have been developed and finalised in consultation with many people across Scotland.”35 The membership of the Older People in Acute Care Project Group, the group that determined the final Clinical Standards for Acute Care had only one patient representative, no consultant in psychiatry, no academic neuroscientist, no clinical ethicists, no involvement with medical humanities, no carers. Critical thinking for critical matters that critically may at sometime involve most of our elders requires width rather than narrowness.

My concern, exemplified in this piece of writing about delirium experienced in acute care is that that “improvement” and “assessment” are being undertaken by the same organisational body. Let me summarise this as best I can: Healthcare Improvement Scotland comes along to you as a clinician and tells you that they are “testing” intervention X which, they tell you, they think is going to improve patient care. They then come back to assess how well you are doing this. Are you going to risk failing your assessment by telling them that intervention X is poor? The risk here is of self-fulfilling prophecies.

Robbie Pearson, Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland, confirmed this with the Scottish Parliament:

“The crucial thing is that the NHS board owns and values the inspection improvement plans and that the NHS board demonstrates, within the board’s governance system, that it is making progress.”44 Mr Pearson then goes on to confirm that Healthcare Improvement Scotland “are not a regulatory body with enforcement powers, but we have significant powers under the Public Services Reform (Scotland) Act 2010 that allow us to carry out our duties.”44

Dr Denise Coia, Chair of Healthcare Improvement Scotland, was equally clear on this:
“… what is important is not only the reaction of health boards to our findings but what they do about them. Our organisation is unique in that no other—apart from one, I think, in the Netherlands—provides both a scrutiny and an improvement function44

Dr Coia also outlines the vital need for NHS Health Boards to demonstrate that they have acted on the recommendations made by Healthcare Improvement Scotland following inspections of acute services for older people:

“We can also refer beyond that to the Scottish Government’s performance management unit and to the director-general in our sponsor division in the Scottish Government. From there, the issue can be escalated up to a minister, so there are ultimate sanctions. Scotland is a very small country and you can go up that ladder fairly quickly if you need to.”44

This is why the basis of inspections needs to be evidenced-based, ethically considered and more broadly inclusive. Without such, despite the intention, person-centred care, respect and dignity for the individual in hospital may not have been properly considered.

For a small organisation like Healthcare Improvement Scotland, an organisation that is in its infancy, it is entirely understandable why it cannot cover all matters of healthcare from community to hospital (or vice-versa). The risk however is that improvement work focuses on specific areas and that these lose sight of necessary hole-ousia (the wider journey and the real life and circumstances of the unwell person). In trying to provide the most holistic understanding and care perhaps we may always falter but we should be aware of our falterings and never give up on this.

In evidence to the Scottish Parliament, Healthcare Improvement Scotland was asked by the Health Committee about their role in community services and how this informed approaches to acute care recommendations. Dr Denise Coia, Chair of Healthcare Improvement Scotland, stated that “…. when pathways of care get blocked because there are not enough community services and we find that acute hospitals are managing patients who would probably be more appropriately managed in the community, we might say that the care is inappropriate at that point and we need to do something about it …”44

One member of the Health Committee, Gil Paterson, SNP, asked more about this:
“If, in your expert opinion, some of what is going wrong may be due to funding and may be causing a lack of resource at the coalface, would you put that in your report? Would that see the light of day? Would it get into the public domain in some way if you thought that that was genuinely a problem, as with Southern Cross? Would we get to know about such issues through your work?”44

Robbie Pearson, Director of Scrutiny and Assurance, answered this on behalf of Healthcare Improvement Scotland stating that “I do not believe that that is our role”44

The Deputy Convener of the Health Committee, Bob Doris, SNP then commented “Do you have to wait for the integration of health and social care bill to do that?”44

Considering time-honoured holistic assessment, Bob Doris, Deputy Convener, went on to ask another most important question: “Is any assessment done of older people’s general mental health?”44

Dr Coia answered on behalf of Healthcare Improvement Scotland. It is a reply, I must be honest, that has caused me concern: “I will answer that because I am a psychiatrist by background. We talk about “dementia and cognitive impairment” because many older people who are depressed do not require a full mental health assessment, but they become cognitively impaired as a result of their depression, so that is a good proxy indicator. That is why, when we were thinking about the inspection of older people’s care, I was keen that we looked at not only dementia but cognitive impairment, because that is a good proxy measure of what is going wrong with an older person’s mental health. We do not do a full mental health assessment as such, but picking up on cognitive impairment begins to get us into the area that you talked about.”44

Following this logic, our elders are being understood in a more “holistic” way, in terms of who they are, how they feel and their unique individual circumstances and life-stories (most commonly) by a 4-item screening test, that is a mandatory recommendation for “improvement” that asks: your name, age, where you are and the current year.

I really would ask that Healthcare Improvement Scotland think again about this. I say this as NHS Boards will not do so. They will understandably follow all the recommendations. Whilst our elders, on the specifics of such improvement work, appear to have no voice, either individually or collectively. This can hardly be reasoned as respectful, dignified or plain-simply “patient-centred”

It occurs to me that there are parallels with the improvement work in delirium with the recent drive in policy for early diagnosis of dementia.[62] Both these wide ranging initiatives are based on conditions/diseases that affect the individual. Both conditions can be very serious where ethical medicine and nursing have a duty of care. However, these initiatives must recall they start on a “pathway” that is orientated by the condition and/or disease. This is not the same as starting with the person.

Dr Leon Eisenberg has written about this in less faltering way than I can:

“I have elsewhere proposed the usefulness of distinguishing between “disease” and “illness,” terms employed synonymously in ordinary usage. Physicians are taught to conceptualize diseases as abnormalities in the structure and function of body organs and tissues. However, patients suffer illnesses; that is, experiences of disvalued changes in states of being and in social function.”45

We can, and should continue such improvement work, but I would argue that we must be mindful that we collectively have an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients. The King’s Fund has just this week published a report that concludes that the way that the United  Kingdom manages its ageing population needs to “change radically so that care is coordinated around all of a person’s needs rather than being based on single diseases.”[63]

(b) “Infusion of worldwide teas”[64]
This piece of writing is nearly at an end. I realise that much has been covered in a most complicated narrative. I do not know about you but I have generally found that life is like that. This short closing section has taken as a title a few words from Love in the time of Cholera. I have read this book several times and the Fermina Daza’s tea69 always struck me as a metaphor for the best approach to understanding: that we should try and infuse this with real-world considerations. I could see in this tea, the words of Leon Eisenberg, words that have equally mattered to me in my approach to improving health, understanding and care:

“The very success of biomedicine has exacted a price in the way it has narrowed the physician’s focus exclusively to the biology of disease. However, the remedy does not lie in abandoning reductionism where it is appropriate but in incorporating it within a larger social framework to enable the physician to attend to the patient as well as to the disease.”45

Leon Eisenberg was also of the view that “what has hampered progress is too narrow a view of the sciences relevant to medicine.”45

I am going to conclude, that well intentioned as these pathways to “triage” our elderly by mandatory cognitive screening tests most certainly are, there are risks. This process involves reductionist tests, being recommended for use by non-trained staff. The risk is that such shorthands are regarded as more important and robust than overall holistic assessment. I use validated rating scales everyday and when and used carefully and ethically they are an important part of overall assessment.

In improvement work such as this might we unintentionally be strapping ourselves to isolated measures that are the “quickest” and perhaps cheapest ways of addressing the needs of an ageing population who may present unwell? Would it not be better, for all concerned if we trained and provided more frontline staff, doctors and nurses, who take a holistic, scientific and ethical approach to proactive old age medicine?[65]

The Clinical Standards may be 12 years old now, but these words have surely been found prophetic: “Geriatrician involvement in acute care has increased over the years, but the pattern of service provision and the degree of collaboration with other specialists vary greatly across Scotland. Only a minority of older acute sector patients are cared for by geriatricians. Care of older people is now a major task for most acute specialties.”35

I want to very briefly talk about fear. This matter was actually raised by Dr Graham Ellis in his film for Healthcare Improvement Scotland. In talking to the relatives Dr Ellis has become acutely sensitive, as I have, of “the fear that their loved ones have of being admitted to a Nursing Home.”17 In my job as an NHS  Consultant in the community I see patients recently discharged from hospital. I am of the view that they are more fearful than ever about being understood for their cognition alone. That they are aware that they will have memory tests whether they like it or not. The line of thought that follows may be subconscious, but it often seems to be: “if they think I am confused they will regard this as dementia (or Alzheimer’s)” – “I will not recover from this” – “I am going to end up in a Nursing Home and die there.”

This is why we need to engage our elders in decisions that may affect them. We can and should ask relatives and carers, but we also need to study wider cultural fears in our ageing population generally so that we improve care as we all wish so to do.[66]

Bettina Piko suggested in a paper now a decade old, that medicine should be viewed as an “integrative, biopsychosocial science,” and that “medical education must involve the study of the biological structures and psychosocial functioning of human beings not as separate systems, but as interactive ones.” Dr Piko suggested in conclusion that the “physician needs to become a sort of neo-polymath in a new Renaissance.”[67]

This week a good example of such an approach was published in the BMJ online pages. It was by a Senior House Officer called Dr Sarah Lois Pinninty.[68] One of the points that Dr Pinninty made was the risk of over-burdening services through well-intended improvements that are based on reductionist and poorly validated tests. The potential situation that may arise is that as services are stretched further, those most in need actually may be less likely to get the level of service they require. We must be wary of faltering steps into a world of inverse-care.

I am not recommending this to everyone

(click anywhere on the picture above to play film)


[1] Márquez, G. G. Words from p311 of “Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[2] Morgan, Edwin. In the snack bar. Carcanet Press and Mariscat Press

[3] Inouye, S. K. et al  Review: Delirium in elderly people The Lancet Volume 383, Issue 9920, 8–14 March 2014, Pages 911–922

[4] The Scottish Delirium Association was formed by a group of health professionals working across Scotland. Its aim is to provide a forum for discussion and sharing of best practice.”  http://www.scottishdeliriumassociation.com/

[5] NICE Clinical Guideline 103: Delirium. Issued: July 2010 http://publications.nice.org.uk/delirium-cg103

[6] LaMantia, M. A. Screening for Delirium in the Emergency Department: A Systematic Review. An Emerg Med. 2013;1-12

[7] Section 2.1 Care of older people in acute hospitals.  Board meeting: a public meeting of the Healthcare Improvement Scotland Board 18 December 2013. Boardroom, Gyle Square, Edinburgh

[8] Annual Scrutiny and Inspection Plan: Draft for Consultation – 2014-15 Healthcare Improvement scotland “This consultation has now closed.” http://www.healthcareimprovementscotland.org/previous_resources/policy_and_strategy/scrutiny_plan_2014-15.aspx

[9] The Whittle Report. Report on the review of the methodology and process for the inspection of the care of older people in acute hospitals. November 2013

[10] Bond, P. Team leader for Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014 http://www.healthcareimprovementscotland.org/our_work/patient_experience/opac_improvement_programme.aspx

[11] MacLullich, A. Delirium and “Terminological chaos”

[12] Thoreau, H. D. ‘Men have become the tools of their tools’ Milder, 1995: 63

[13]The 4A Test: Screening instrument for cognitive impairment and delirium”  http://www.the4at.com/

[14] MMSE Folstein M. F. et al “”Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician”. (1975). Journal of Psychiatric Research 12 (3): 189–98.

[15] King, G. Speak Up! The Mini Mental State Examination a tool or a weapon? Mental Health Lecturer, University of Dundee. Mental Health Nursing. Oct/Nov2013, Vol. 33 Issue 5, p14

[16] Ellis, G. Clinical Lead on Frailty for Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014  (brief discussion on the “Frailty Screening Triage Tool”) http://www.healthcareimprovementscotland.org/our_work/patient_experience/opac_improvement_programme.aspx

[17] Healthcare Improvement Scotland. An interview with Executive Clinical Director of Healthcare Improvement Scotland, Dr Brian Robson, on clinical engagement

http://www.healthcareimprovementscotland.org/our_work/clinical_engagement.aspx

[18] NHS Forth Valley: Integrated Model of Care for Patients with Dementia ALL PATIENTS > 65 YEARS MUST BE SCREENED FOR COGNITIVE IMPAIRMENT” 19 Jun 2013

[19] AMT4 – A shortened four-item version of the Abbreviated Mental Test (AMT4) was constructed using the following items: (1) Age, (2) Date of birth, (3) Place, and (4) Year, with impaired cognition indicated by an AMT4 score of less than four.

[20] Confusion Assessment Method (CAM). Adapted from Inouye et al., 1990.

[21] Miller, M & McDonald Identification and Immediate Management of Delirium. Improving Care for Older People (in Acute Care) Version 2 – updated on 5 July 2013 following a period of initial testing http://www.knowledge.scot.nhs.uk/improvingcareforolderpeople.aspx Driver diagrams, change interventions and ideas for testing

[22] Healthcare Improvement Scotland. Raigmore Hospital. Older people in acute hospitals announced inspection 24-26 September 2013

[23] Healthcare Improvement Scotland. St John‘s Hospital. Older people in acute hospitals unannounced inspection 3-5 September 2013

[24] Healthcare Improvement Scotland. Western Isles Hospital. Older people in acute hospitals announced inspection 13-18 October 2012

[25] Care for older people praised. 18 Sept 2013. http://nhsforthvalley.com/care-for-older-people-at-fvrh-praised/

[26] Healthcare Improvement Scotland. Larbert Hospital. Older people in acute hospitals announced inspection  23-25 Jul 2013 http://www.healthcareimprovementscotland.org/our_work/inspecting_and_regulating_care/opah_forth_valley/forth_valley_royal_sept_13.aspx

[27] Gordon, P. J. Letter to Ian Smith, Senior Inspector, Healthcare Improvement Scotland. 23 Sept 2013

[28] Sleeman,E. Editorial: The Liverpool care pathway: a cautionary tale. BMJ 2013;347:f4779 Published 31 July 2013

[29] Smith, I. Letter of reply from Healthcare Scotland. 3 Dec 2013

[30] Robson, B. Executive Clinical Director Healthcare Improvement Scotland. Letter dated 31 Jan 2014 to Dr Peter J. Gordon

[31] Gordon, P. J. E-mail to Healthcare Improvement Scotland following teleconference on 30 Jan 2014

[32] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) page 7

[33] Healthcare Improvement Scotland.Our work and achievements 2012-2013. Interview with Executive Clinical Director, Dr Brian Robson

http://www.healthcareimprovementscotland.org/about_us/interviews_with_senior_staff.aspx

[34] Minute of NHS Forth Valley Performance & Resources Committee 7.1 Francis Enquiry Update on Action. 5 Nov 2013

[35] Forth Valley NHS Board Clinical Governance Committee meeting 6.5 Update on Francis Report 11 Oct 2013

[36] Delirium and Dementia Study Day. Forth Valley Royal Hospital. 6 March 2014

[37] Curran, D. The Quality Unit – Planning and Quality Division. 13 Feb 2014 Letter on behalf of Alex Neil Cabinet Secretary for Health and Wellbeing to Dr Peter J Gordon. ref: 2014/0001500 In response to Dr Gordon’s letter of 31 Dec 2013

[38] Márquez, G. G. Words from p227 of Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[39] Sokel, D. Ethics Man: Informed consent is more than a patient’s signature BMJ 2009;339:b3224 Published 27 August 2009

[40] Healthcare Improvement Scotland. Minutes of evidence given to Scottish Parliament Health and Sports Committee 15 Jan 2013

[41] Eisenberg, L. Science in Medicine: Too Much or Too Little and Too Limited in Scope? Am J Med. 1988 Mar; 84: 483-91.

[42] Wilson, S View expressed on social media on cognitive testing for all 65 year olds and over. 2 Feb 2014

[43] NICE Guideline CG103 Delirium: Diagnosis, prevention and management. This Guideline and the pathway it recommends begins with a chapter on  “Person Centred Care”

http://pathways.nice.org.uk/pathways/delirium#content=view-node%3Anodes-information-for-people-at-risk-of-or-with-delirium

[44] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p66

[45] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p32

[46] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland)  p50

[47] Board meeting: a public meeting of the Healthcare Improvement Scotland Minute 2.3 National screening programmes 18 December 2013, Edinburgh

[48] Davis, H E-mail of reply from UK National Screening Committee 3 Mar 2014

[49] Healthcare Improvement Scotland Care for Older People in Acute Hospitals. Overview report (August 2012 – April 2013) Section 3.0: Key Findings. Report dated July 2013

[50] MacLullich, A. Professor of Geriatric Medicine, University of Edinburgh. Secretary of the Delirium Association. Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014  (Delirium pathways, delirium screening and the 4AT screening test for cognitive impairment and delirium)) http://www.healthcareimprovementscotland.org/our_work/patient_experience/opac_improvement_programme.aspx

[51] Reynish, E All older people should be assessed for memory function 12 July 2013 Professor Reynish is Chair of the British Geriatrics Society Dementia and Similar Disorders Section

[52] Wolff, L. Chair of Scottish Delirium Association (SDA) Improving care for older people in acute care Team Flash report. Preventing and Improving Delirium in Patients over 65 with hip fracture. Improvement Planning Event. March 2014

[53] Wolff, L. THINK Delirium. Delirium Management Pathway: Chair of the Scottish Delirium Association (SDA) and Brian McGurn (SDA) Health Improvement Scotland: Michelle Millar and Karen Goudie Presented August 2013 http://www.scottishpathways.com/wp-content/uploads/2013/08/Workshop-1.3-Thursday-AM-THE-WELLINGTON-Linda-Wolff.pdf

[54] Cleaver Lorraine. Comment on social media on Healthcare Improvement Scotland recommendations to test all our elders admitted to hospital with the 4AT test. 3 Feb 2014

[55] Heath, I. View expressed on social media as to mandatory cognitive screening for all aged 65 and over admitted to acute hospital. 2 Feb 2014

[56] Francis, R. The Francis Report. Mid Staffordshire NHS Foundation Trust Public Inquiry. 6 Feb 2013 http://www.midstaffspublicinquiry.com/report

[57] “What is required now” A short film. A year on from the Francis Enquiry. By Omphalos. https://vimeo.com/87192473

[58] Hole Ousia. The writings of Dr Peter J. Gordon http://holeousia.wordpress.com/

[59] The Whittle report 2.1 National standards, guidance and best practice. As used as basis for Inspections. November 2013

[60] Knűppel H, Mertz M, Schmidhuber M, Neitzke G, Strech D (2013) Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis. PLoS Med 10(8): e1001498. doi:10.1371/journal.pmed.1001498

[61] Gordon, P.J. Dementia Guidelines: research and clinical criteria are not simply “interchangeable” http://www.bmj.com/content/347/bmj.f7282/rr/676567

[63] King’s Fund. Making our health and care systems fit for an ageing population. 6 Mar 2014. www.kingsfund.org.uk/publications/making-our-health-and-care-systems-fit-ageing-population.

[64] Márquez, G. G. Words from p395 of Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[65] Marcantonio art al. Reducing delirium after hip fracture: a randomized trial. J Am Geriatr Soc, 49 (2001), pp. 516–522

[66] Manthrope, J et al From forgetfulness to dementia, Br J Gen Pract 2013; 63: 30–31

[67] Piko, B. Physicians of the future: Renaissance of polymaths?  J R Soc Promot Health. 2002 Dec;122(4):233-7.

[68] Pinninty, S. L.  Senior House Officer Chesterfield Royal Hospital, Calow, Chesterfield, Derbyshire. March 2014. British Medical Journal rapid-response  http://www.bmj.com/content/348/bmj.g1879/rr/689094

“Alzheimerisation”: wandering, wondering and worrying

28th January 2014

Data published this week demonstrated that in 2012 prescribing of “dementia drugs in Alzheimer’s disease” was “50% higher than expected.”[1] In a published commentary about this, it is stated that “experts say that the discrepancy may be because of rising prevalence rates, and an underestimation by analysts of the number of people with Alzheimer’s disease”.[2]

Of course, it is just as feasible that there could be other explanations for this dramatic increase in prescribing. Here, I am going to share with you some of my thoughts against the potential backdrop that some sociologists have chosen to term as “Alzheimerisation”.[3]

(1) Wandering
It is not just our elderly who may wander. Recently I got lost in our new ward designed for those with dementia! I also want to suggest that our “experts” have wandered and may still be wandering. Between 1962 and 2013, roughly the duration of my life so far, we have had twelve different categories for mild cognitive change in the later years of our life.[4]

The wandering of our experts has been between ageing and disease. On expert “maps” they have generally been placed in separate spaces.[5]

Alzheimer’s disease is a pathological diagnosis based on post-mortem microscopic pathological changes in the brain. This is a definition based on the understandings of 1908 and which subsequent research has established as limited. Professor Clive Ballard, one of today’s leading experts in Alzheimer’s disease summarised this in the Lancet in 2011 “The paradigmatic brain pathology of Alzheimer’s Disease – plaques and tangles – is only a post-mortem finding of limited explanatory value in the expression of dementia in the population.”[6] Forty years of research on amyloid deposition has found that it has no simple causative role[7] and indeed post-mortem studies have established that amyloid deposition is generally also found in the post-mortem brains of those who have lived long lives without any cognitive or memory loss.[8]

(2) Wondering
We all wonder[9]. Even with dementia, despite all the bleak reporting, we generally still have much capacity to wonder. The day that science stops wondering is a day that should worry us all.

Using data from 2011 (the year before we find this 50% increase in prescribing of dementia drugs1) it has been established that the prevalence of dementia has actually significantly reduced.[10] Professor Sube Banerjee recently gave commentary to this in the Lancet and stated that “The CFAS data point to substantial added value from existing healthy lifestyle messages. They suggest that lifestyle changes – e.g., in diet, exercise, and smoking – might reduce the risk of dementia and promote more general health and wellbeing. This notion should be incorporated into health promotion messaging. Inclusion of the potential benefit of dementia prevention in communications could drive greater adoption of healthy life-styles with resulting benefits for individuals and society.[11] I would agree. It thus interested me, that in this report, Professor Banerjee never once used the word “Alzheimer’s”. So I am left wondering about a mismatch of language between Professor Banerjee’s report11 and the latest statement that the prescribing for “Alzheimer’s” has increased by 50% in one year.1

Our Prime Minister has talked a lot about the myths that have added to the stigma of dementia.[12] I agree with our Prime Minister that myths should not be part of medical science. I wonder then why the prevailing “understanding” has been that for the four licensed drugs for dementia that they can potentially improve the outcome especially if instituted early. No robust evidence has ever supported such conclusions.[13] The prevailing early diagnosis strategies and targets, promoted by dementia experts, political and charity leads, made very little effort to correct this understanding.[14]

(3) Worrying
I admit that I worry quite a lot. Given my determination to pursue science that is pluralistic and that heeds the lessons of history and cultural change, I have in recent years, started to worry that we have “re-branded” too much of memory loss in old age, and generally, as “Alzheimer’s disease” or even just “Alzheimer’s”.

In the 1990’s the pharmaceutical industry, hopeful that anti-amyloid drugs would be efficacious, employed branding firms, such as Complete Clarity to “build” a “future-focussed market landscape.” [15] At the same time key opinion leaders were employed to “educate” the medical profession on this newly “built” “market landscape”. Many of these Key Opinion Leaders are today still being well paid for educating us all.[16] Perhaps I worry too much about this? Perhaps we should all be reassured that such experts have greater ability to be objective and so are uninfluenced by potential biases that evidence has demonstrated influence the rest of us.[17] Last year for example, Ballard, who had confirmed that “the paradigmatic brain pathology of Alzheimer’s Disease – plaques and tangles – is only a post-mortem finding of limited explanatory value in the expression of dementia in the population”6 published a paper, sponsored by Lundbeck, in which he outlined the “barriers to evidence-based prescribing in Alzheimer’s disease”. In this paper Ballard made a “key point” that “only about 10% of dementia patients receive an acetyl-cholinesterase inhibitor or Memantine”[18]

As I recently described in my blog (the Forgetfulness of others[19]) I am a full supporter of all research and innovation that aims to improve the outcome and the lives of those living with dementia, of whatever stage. I would urge that the approach to such research has a pluralistic base and is led by science that Robert K Merton insisted should be disinterested i.e. not for personal advantage but for the progression of science alone.[20] In this respect, I personally found the big-business framing of the G8 Dementia Summit as an opportunity that actually risked the sort of imbalance that the BMJ have considered as “too much medicine too little care”.[21]

I also was left worried after the G8 Dementia Summit that the recurrent use of military and plague metaphors used by many of the dementia experts and politicians, in effect actually risked heightening the stigma that, in the same breath, they urged us to address.[22]

Nearly two years ago, I made a film called The diseased Other[23] in which I sought to outline my concern that we risk mislabelling one-in-two of our most elderly as “suffering” from “Alzheimer’s disease”. If my worry is valid, then we must consider if we have truthfully explained the scientific uncertainties of the diagnosis of Alzheimer’s disease in this age group. Most of the dementia experts I ask today cannot easily answer this seemingly straightforward question: “What do we mean by Alzheimer’s disease?”[24] Our elders deserve full engagement with both our certainties and uncertainties even if Banerjee considers the latter as “toxic”.[25] Both false-negative and false-positive diagnoses should concern us equally. To worry about one and not the other is simply unethical.

I also worry that our elders are today more fearful than previous generations about dementia, or as “Alzheimer’s” as it now almost seems synonymously misunderstood. I would like to see more research in this area.[26] I have certainly found a disproportionate level of fear in many of those who come to my clinic or who have been discharged from hospital (this is increasingly the case now that cognitive screening is mandatory for any individual 65 or over admitted to hospital.)[27] The controversial Dementia DES has now been well debated, and is based on the view that our elderly need not be asked for consent for memory-testing and that dementia should be “case-found” regardless of patient wishes.[28]

So in summary, I close with three questions:

  1. Do  we risk, through policy approaches and “healthcare improvement”, re-labelling many of our oldest citizens as “suffering” from “Alzheimer’s disease”?
  2. Might this latest report of a 50% increase in prescribing of dementia drugs be indicative of this?
  3. Should the “Alzheimerisation” neologism be confined to room 101 or should it have full light of day?

I proudly sign off as a wanderer, wonderer and worrier.


[1] Health & Social Care Information Centre: Use of NICE appraised medicines in the NHS in England – 2012, experimental statistics,21 Jan 2014 http://www.hscic.gov.uk/catalogue/PUB13413/use-nice-app-med-nhs-exp-stat-eng-12-rep.pdf

[2] Duffin, C. Alzheimer’s dugs ‘overprescribed’ suggest NHS figures. PULSE magazine, 24 January 2014 http://www.pulsetoday.co.uk/clinical/therapy-areas/neurology/alzheimers-drugs-overprescribed-suggest-nhs-figures/20005654.article#.UuoCwOWontx

[3] Giggs, P. and Rees Jones, I Medical Sociology and Old Age – Towards a sociology of health in later life. From Chapter 5 Chapter 5: The death of old age, critical approaches as undertakers. Routledge. 2008

[4] Le Couteur, D.G, Brayne, c. et al Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis. Published 9 Sept 2013. BMJ2013;347:f5125

[5] George, D. R., Whitehouse, P & Ballenger J. The Evolving classification of dementia: placing the DSM-V in a meaningful historical and cultural context and pondering the future of “Alzheimers” Cult Med Psychiatry. 2011 Sep;35(3):417-35.

[6] Ballard, C et al Alzheimer’s disease, Lancet 2011 Mar 19;377(9770):1019-31

[7] George, D.R., Whitehouse,P.J., D’Alton,S and Ballenger, J. Through the amyloid gateway. The Lancet, Vol 380 December 8, 2012

[8] Reisa A. Sperlinga et al Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease Alzheimer’s & Dementia 7 (2011) 280–292.

[9] Tallis. R. In Defence of Wonder and other Philosophical Reflections. Published 2012. Acumen

[10] The Cognitive Function and Ageing Study (CFAS) I and II http://www.cfas.ac.uk/

[11] Banerjee, S Good news on dementia prevalence – we can make a difference. The Lancet. 26 Oct 2013

[12] Cameron, D. The Prime Minister’s Challenge on Dementia. Policy paper Published 26 March 2012 https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia

[13] Drug Discovery Programme – Alzheimer’s Society Dementia Research 14 Jan 2014 http://www.youtube.com/watch?v=F2clNGdQRWs

[14] Midgley, Mary. The Myths we live by. Routledge. 2004

[15] Mapping the Future of Alzheimer’s Disease: The Business Problem http://www.completeclarity.com/see-our-work/case-study-the-future-of-alzheimers-disease/

[16] Moynihan, R. Key opinion leaders: independent experts or drug representatives in disguise? Published 19 June 2008 BMJ2008;336:1402

[17] Spurling, G. M et al Information from Pharmaceutical Companies and the Quality, Quantity, and Cost of Physicians’ Prescribing: A Systematic Review. Published: October 19, 2010. 10.1371/journal.pmed.1000352

[18] Ballard, C. Barriers to evidence-based prescribing in Alzheimer’s disease. March 2013. British Journal of Mental Health Nursing, Vol2 No1

[19] Gordon P., The forgetfulness of others.1 January 2014 http://holeousia.wordpress.com/2014/01/01/the-forgetfulness-of-others/

[20] Merton, R.K The changing production system of scientific knowledge from Hole Ousia http://holeousia.wordpress.com/2013/05/11/the-changing-production-system-of-scientific-knowledge/

[21] British Medical Journal: Too much medicine campaign http://www.bmj.com/too-much-medicine

[22] Ashcroft, R. Why I feel angry, not grateful, after Cameron’s dementia summit. The Guardian. 12 December 2013 http://www.theguardian.com/commentisfree/2013/dec/12/angry-not-grateful-cameron-dementia

[24] Richards, M and Brayne C. What do we mean by Alzheimer’s disease? Published 12 October 2010 BMJ2010;341:c4670

[25] Burns, A and Buckman, L. Timely Diagnosis of Dementia: Integrating Perspectives, Achieving Consensus  Meeting London, June 2013 http://www.dementiaaction.org.uk/assets/0000/3808/NHS_England_BMA_Diagnosis_Consensus.pdf

[26] Manthorpe, J. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. British Journal of General Practice. 2013;63: 30-31

[28] Haynes, J Dementia DES will result in widespread misdiagnosis, expert claims 12 Sept 2013 PULSE

The forgetfulness of others

To grow old, as Simone de Beauvoir said “is to define oneself” and being defined is privative as well as positive”

I have always been interested in the history of my profession. In what follows I am going to offer my personal look-back at the last year in the world of dementia as it reached me as a medical professional. This year is now confined to history, just like every other year before it. I shall try not to leave anything out, but the world is a big place and I was born into it backwards and so I may not spell it out in the same way as you would. My twitter name is PeterDLROW[1]. All I ask is for your forbearance and hope that you may find something of interest in these personal reflections.

For clarity I shall divide what I am about to write into two sections: the first section (PART I) shall explore the language used in discussing dementia, and the second section (PART II) shall look at dementia policy as it has developed in the United Kingdom. Whilst I will look back over the last year, it is quite likely the time-frame may reach back further. Sometimes dates don’t always stay clearly with me and I find this a little more so when I am trying to recall so many happenings.

Written by Dr Peter J. Gordon, 31st December 2013

PART I: Dementia: the “epidemic” of metaphors

PART II: Dementia: who is in the “driving seat”?


[1] Folstein M.F,et al (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician”. Journal of Psychiatric Research 12 (3): 189–98. As part of the mini–mental state examination (MMSE) the rater will ask you to spell WORLD backwards. The MMSE is now under copyright

PART I: Dementia: the “epidemic” of metaphors

At the creative heart of science is a spirit of open-minded enquiry[1]. The history of my profession has revealed this to me alongside the realisation that if dementia is to be understood, then both numbers (that which is quantifiable) and words (the qualitative) should be understood as equal forms of measurement[2]. It has thus concerned me that the words used when discussing dementia in our current culture have kept returning to metaphors in categories of loss. At least five categories of metaphors have emerged to describe dementia. The first category is that of MILITARY metaphors and this seems to be the most prevalent of all. The other four categories include: CRIMINAL metaphors; metaphors of CONTAGION; metaphors of OTHERNESS; and lastly, metaphors of MAPS.

(1) MILITARY:
The Scottish Government, in terms of dementia strategy, have routinely used military metaphors. Indeed the first “target” was HEAT Target 4 which set an explicit, financially incentivised target, for all NHS Boards to attain 61% “early diagnosis” of the Eurodem prevalence of dementia[3]. This Target having been reached has since been hailed by the Scottish Government as demonstrating how the Scottish Government “have been doing quite well[4].”  Geoff Huggins, Head of Mental Health for the Scottish Government who was invited to present evidence to the All Party Parliamentary Group, told Westminster that to improve dementia diagnosis rates for Scotland, this required “occasionally us taking one or two key clinicians or managers around the bike sheds and giving them a bit of encouragement and we [Scottish Government] have been quite careful to take out saboteurs4.

Listening to the recent G8 Dementia Summit[5] in London I struggled to count the number of times the word “fight” was used[6]. The Alzheimer Society use the word ‘fight’ in day-to-day communication as it is a definitive part of their official logo. The word ‘fight’ was also included in the Dementia Challenge as given in the inaugural address by Prime Minister David Cameron[7]. It would indeed be a “challenge” to find an image, about dementia, without “fight” appearing in the background of our Prime Minister. The military nature of the ‘dementia challenge’ was reinforced by David Cameron as he repeated that Britain must take an “all out fight-back” to deal with this dementia “explosion”. It was George Bernard Shaw who once remarked:  “so many words repeated saying the same thing over and over again. That is, as you know, the way to drive the thing into the mind of the world”[8] I addressed the use of such military metaphors for dementia in a published response to the British Medical Journal[9] and also in a film (‘Fighting Talk’) which I presented to the Annual Conference of the Royal College of General Practitioners #RCGPAC in Harrogate in October 2013[10].

I would argue that military metaphors, used to describe illness or disease, have, if not an overt, a subconscious impact on society. I would suggest that by applying such militarism to every individual living with dementia we risk identifying those living with cognitive changes as ‘losers’ or as those who have been ‘defeated’[11]. In short this is the sort of language that risks heightening stigma. The irony is that in using such metaphors: the Alzheimer Society, the “Dementia Challenge,” and the G8 Dementia Summit risk exacerbating the “myths” that they so encourage science and humanity to address. It seems to me that this really is an approach to the WORLD that is spelled backwards and stigmatises our elders.

Along with the notion of those ‘defeated’ through ‘war’ comes the notion of “burden.” Such a notion is certainly neither meant nor explicit but it does seem to linger in the blurred lines between ageism and biological reductionism. It is important that you realise that it is the language used that may risk ageist overtones.

Ray Tallis was one of the first to explore the language used by the medical profession and then went on to consider this in the context of increased longevity. Tallis also reflected upon the common use of the word “challenge” when referring to our elders:

“[My] optimistic tone may provoke disbelief. Surely the longer people live, the more likely they will be ‘a burden’ or (more politely) ‘a challenge’ to themselves, to their friends and relatives who find themselves transformed into (willing or unwilling) carers, to medical and social services and to the economy as a whole? Do not old people cost money; time, effort, patience? Do we not read daily of the burden placed on society by old people.[12]

(2) CRIMINAL
In addition to the use of military metaphors, it is not uncommon to hear metaphors of criminality being used to describe dementia’s effect upon the person. In his keynote address to the G8 Dementia Summit, Prime Minister, David Cameron said:

This disease steals lives; it wrecks families; it breaks hearts and that is why all of us here are so utterly determined to beat it.[13]

I was not alone to share concerns about the language used by our Prime Minister. In a thoughtful piece in the Observer, Professor Ashcroft said:

“The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: “fight-back”, “stealing lives”, “explosion”, “shock”, “timebombs” and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services[14].”

In another reflective commentary, Dr Bob Leckridge asked what our Prime Minister meant by “it”:

“What exactly is this “it”? What kind of creature is it which steals, wrecks and breaks? This is the fundamental problem. Dementia is not a creature, it’s not an alien, it’s not an object even. It’s a process. In fact, I wouldn’t even use the word “it” in relation to dementia (I don’t use “it” in relation to any disease). This is a process which is a process occurring within a human being, a human being who lives within multiple physical, cultural and social environments, a human being who cannot be understood in isolation. If we see dementia as an object we are going to have a hard job achieving sufficient understanding to make a difference.[15]

(3) CONTAGION:
In the summer of last year, under the headline Increasing Burden, BBC Scotland covered a study by The Royal College of Physicians of Edinburgh (RCPE) which found that dementia was present in 25% of all in-patients. Alasdair MacLullich, professor of geriatric medicine at the Royal Infirmary of Edinburgh was quoted:

“Medical training must evolve in line with the evolving dementia epidemic to ensure that medical staff are trained in diagnosing, assessing and treating dementia[16].”

It was also around this time that I shared an interesting discussion with Neil Chadborn and Shibley Rahman about whether it was helpful, and whether it was scientifically valid, to refer to dementia in our ageing western society as an “epidemic”. My instinctive view was that it was not helpful. I have always considered epidemic to refer to infectious disease and that it implied a “contagious pathogen.” I was indeed concerned enough about this that I had written to Professor Alasdair MacLullich about the language he used in this BBC broadcast. My underlying concerns were three-fold: firstly, might the use of ‘epidemic’ to discuss dementia generate disproportional fear in society at large; secondly, might it simplify understanding that dementia is like a virus, that it is a one-cause disease, and can be mastered by science in the same way; and thirdly, might the use of epidemic encourage a sense of “otherness” in our elderly (those growing old) and thus unintentionally be a form of ageism?

It was Shibley Rahman who followed up our discussion with a most considered review of the extant literature: Does the epidemiology of dementia constitute an ‘epidemic’, and does it warrant a “moral panic”?[17] This review started with the universally accepted definition of epidemic:

“The occurrence in a community or region of cases of an illness, specific health- related behaviour, or other health-related events clearly in excess of normal expectancy[18].”

Awareness campaigns have widely reported, and now reached most levels of society, that over the forthcoming decades, large numbers of people will enter the ages when the incidence rates of forms of dementia are the highest. People sixty years and over make up the most rapidly expanding segment of the population: in 2000, there were over 600 million persons aged 60 years or over worldwide, comprising just over 10% of the world population, and, by 2050 it is estimated that this figure will have tripled to nearly two billion older persons, comprising 22% of the world population[19].

The definition of epidemic makes it clear that prevalence should be in “excess of normal expectancy.” In a recent paper Prof Paradis at Stanford University argues that there has been an ‘epidemic of epidemics‘, with no apparent restriction on the type of disease, on frequency or rates of affliction. Prof Paradis generally found that here was no growth or contagion threshold[20].

Neil Chadborn expressed a salutary warning as provided by research into the communication of obesity as a public health issue. Neil commented that the very fast increase in mass media attention to obesity in the United States of  America seems to have many of the elements of what social scientists call a ‘moral panic’. Furthermore, Neil raised the potential consequences at society level, for making misplaced comparisons (or analogies) between completely different medical or physiological conditions. Sociologists talk of ‘moral panic’ where society has a tendency to exaggerate statistics and to create a ‘bogey-man’, known as a ‘folk-devil’. In recent years moral panic encouraged by media presentation have covered a wide-ranging number of topics from HIV/AIDS in the 1980s to immigrants into the UK in the 2000’s. Interestingly at the recent G8 Dementia Summit, Prime Minister David Cameron said in his keynote address:

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS and we are just as resolute today 13.”

It is absolutely correct that dementia is not an inevitable part of ageing. However it is equally correct that ageing has a stronger correlation with cognitive function than any other factor. There are hundreds of risk factors, and probably more, for cognitive changes in our brains and the majority of these risk factors relate to our lifetime experiences and exposures. The most robust risk however relates to ageing as it accumulates these risk factors (here, I must make clear I do not include early-onset progressive dementias). From a philosophical perspective it has long occurred to me the perils of completely dividing our ageing selves (and in this case brains) from disease. It is here that harmful simplistic notions can set in: notions that ignore the complex reality and notions that may unintentionally stigmatise and even disadvantage our most old elderly. In a recent Editorial in the British Medical Journal, Jeroen Spijker and John MacInnes argued that current measures of population ageing are misleading and that “the numbers of dependent older people in the UK and other countries have actually been falling in recent years[21].”

We must also consider that this difficulty in “drawing the line” is not confined to dementia. Whilst psychiatry is bedevilled by this issue generally there are also huge difficulties with classification boundaries within general medicine. For example in a “major revision to treatment goals”, an expert panel has concluded that older hypertensive patients, those aged 60 years or older, should be treated to a blood pressure target of less than 150/90 mm Hg, rather than 140/90 mm Hg as recommended in previous guidelines[22].

It is my view here, as a historian, who has observed the medical profession and policy makers see-saw between ageing and disease, that we must not stifle discussion and that we must include public health doctors and ethicists in this. These are the words of Iona Heath in a letter to the British Medical Journal about “stage III kidney disease:”

 “Coresh and colleagues write that “the attitude that disease in older people should be ignored and untreated is disturbing.” …. the authors persist in confusing risk with disease…A low estimated glomerular filtration rate and albuminuria are not diseases in themselves but risk factors for future problems. Describing people with risk factors as having a disease is unhelpful and demoralising to these people[23].”

(4) OTHERNESS
In a recent analysis published in the British Medical journal, which was part of the series “Too much Medicine” Professor Le Couteur and colleagues cited concerns about current United Kingdom policy in the early diagnosis of cognitive problems. The article, which was entitled “Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis[24]” generated considerable response which covered a range of views. One of the replies was by Professor Alistair Burns, National Clinical Director for Dementia in England & Wales and included support from fifty-one others including clinical professors, academics, nurses, charity leads and individuals living with dementia[25]:

“[Le Couteur et al] attempt ‎to repudiate three decades of dementia research and clinical practice. It completely ‎misses the main aims of the current political approach and is in danger of being an ‎affront to the millions of people with dementia and their families, who are suffering ‎with this devastating illness, and undoing much of the good done over recent years.” ‎

This response by Burns et al concerned me as it completely misjudged what this analysis was about, which was not about dementia but the inherent possibility of overdiagnosis in the prevailing drive for earlier and earlier diagnosis.

There was one reply to Le Couteur et al that stood out for me and is worth quoting. It was by the surgeon, Professor Basil Jide Fadipe, of Dominica[26]:

“The subject of neurocognitive disorder is something off my street but that of overdiagnosis is everybody’s. I did read Le Couteur and found the paper very informative and persuasive with a reasonable balance of evidence as its basis. Diagnosis is one thing; overdiagnosis another. Le Couteur was about the latter.

When brain scans and bio markers get into the diagnostic armamentaria in sub-clinical neurocognitive disorders, the risk also begins to mount of overdiagnosis given that either of these diagnostic tools will (must) have some false positives. Until their sensitivities, specificities and predictive rates are properly defined, some cases will find themselves within falsely suggestive brackets, the consequence for which will be un-employability, un-insurability, and an artefactual depersonalization with regards to self cognizance on legal matters.

To under-diagnose or encourage delayed diagnosis is clearly not to be advised (and Le Couteur’s article didn’t come across as doing that) but to encourage overdiagnosis through excessive elastification of diagnostic or inclusive criteria could be just as harmful; in the least, it swells the ranks of people who once so included in the brackets of neurocognitive insufficiency become stigmatized.”

Reading this reply by Professor Fadipe my thoughts returned to a round-table discussion on the timely diagnosis of dementia held in London to which I could not be invited as I was employed by NHS Scotland and this was a meeting for NHS England[27]. The minutes of this round-table discussion were most helpful but, from my perspective, disappointingly light on ethical considerations[28]. At the meeting entitled “Integrating perspectives; achieving consensus” Professor Sube Banerjee pointed out that “transforming toxic uncertainty into empowered understanding was a goal27.” I am interested in ethics, and particularly the ethics of risk, and my concern with this statement and the use of the word “toxic” is that it presents risk to health as a battle that only one-side can win. As a key opinion leader in dementia I have great respect for Professor Banerjee but this approach to risk is surely not helpful.[29] To demonstrate the reductionist and harmful fallacy of this, one could, as a thought experiment, turn Professor Banerjee’s statement into its binary opposite: “toxic certainty.”

One recent piece of research illustrates that knowledge is not always empowering. A study published in the American Journal of Psychiatry in October 2013 on the effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults concluded that informing older adults that they have an APOE genotype associated with an increased risk of Alzheimer’s disease can have adverse consequences on their perception of their memory abilities and their performance on objective memory tests[30].

Whilst I share the overall view presented by Le Couteur et al there was one sub-heading that they used that did concern me: “The curse of a diagnosis.” Here I would suggest the concerns I had with Prof Banerjee’s “toxic” language hold just as valid.  It is my view that the language used by my profession and by those who shape policy and public opinion really does matter.  I considered a potential consequence of such language in a paper that I had published in the Journal of Mental Health and Social Inclusion[31].

“Underlying all forms of discrimination, including psychiatric stigmatisation, is an exaggerated attribution of ‘other-ness’ to certain individuals or groups. Here there is an assumption (made by the discriminator) of the existence of fundamental differences between himself and ‘the other’. Considering this, perhaps we have a seemingly insoluble problem as classifications of ‘disorders’ immediately labels us into some or other category of ‘otherness.’[32]

The medical model has a tendency to examine the world through a microscope where light is artificial, and where any such illumination is confined to the pathological. [in terms of cognitive changes] … my concern here is very real and is based on highly replicable research findings that have repeatedly shown that a cohort, far greater than half, do not progress from early memory loss to clinical dementia. To consider early intervention properly requires a social, ethical and philosophical perspective. Conflating “early memory loss” (a common finding in elderly folk), “early Alzheimer’s disease” (a pathological diagnosis which cannot yet be reliably detected pre-mortem) and “early dementia” (which is what we are really looking for) leaves our profession at risk of the pitfalls which have beset other “early interventions”.

I am convinced the diagnostic lens is a stigmatiser in itself. In such a view the doctor (and the wider world) ceases to see the whole person, and can too easily be distracted from what else is going on outside any label. This, in itself, limits understanding. I certainly think that being conscious of the power of diagnosis and of the labelling process might contribute to a wiser use of diagnoses. Angermeyer et al concluded in a recent systematic meta-analysis “[that at] this stage, promulgating biogenetic causal models of mental illness cannot be regarded as a rational, evidence-based strategy to decrease individual discrimination against people with mental illness, but rather entails a risk of increasing stigma.”

I have urged medical professionals to consider their own attitudes and to become aware of them, to involve service users in the development of services, and to stand up against discrimination[33].

(5) MAPS
Mapping metaphors have become very common in medicine generally and probably seem entirely innocuous:  such as “journey,” “sign-posting,” “summit” etc. Certainly, as metaphors go, I have far less difficulty with them when applied to human well-being and I fully agree that we all “journey” through life.

Like the philosopher Mary Midgley I have always been fascinated by maps. In chapter four of her book “The Myths we live by” Midgley considers maps and asks at outset “why is the fascination of this reductive linear pattern still so strong? [34]

My first introduction to “dementia mapping” was the TESCO sponsored map included with a letter from the Scottish Government[35]. This followed the progress of HEAT target 4 which closed on 31st March 2011, and was a target set to increase the rate of “early diagnosis of dementia”. The figure was based on a 1991 study of prevalence of dementia across Europe (Eurodem study) and compared current rates of diagnosis in Scotland based on prevalences reported through QOF. All Boards were required to attain a target of 61% of the Eurodem prevalence for their population.  The letter from the Scottish Government on the success of this target began “we are delighted to draw your attention to a recent publication by the Alzheimer Society that highlights comparative dementia diagnosis rates across the UK by health area at March 2011. The following diagram highlights this performance visually35.” Scotland was coloured green and England and Wales red (see below).

Dementia-Olympics---disease

You would have thought that I would have welcomed this success. However I shall try and explain why this congratulation hides some less welcome outcomes.

There is evidence that, as well as supporting improvement, target-driven activities can have, in themselves, a range of unhelpful unintended consequences. With the “case-finding” approach of HEAT target 4, and the mapping of this, harms did indeed emerge. The mapping was a one-dimensional approach based on an estimated prevalence. It appeared to me that the map was more important than the person and that the need to hit the target was the primary concern. This kind of target has no room for ethical considerations. I wrote twice to the Scottish Government about my concerns but never had a written reply[36]. As a result I spent a considerable amount of time carefully looking at evidence and ethics in the area of early diagnosis of dementia. I came to the conclusion that a timely approach to diagnosis would be a preferable and less harmful approach.

A further unintended consequence of HEAT target 4 was a re-direction of managerial time and resources to meet these targets. This maybe one of the reasons why frontline healthcare workers have felt an ever-greater disconnect from managerial levels that no longer have much of a role in day-to-day services.

Researchers have reported a range of potential harmful consequences of target-driven approaches and a summary of this evidence was documented in “Intelligent Kindness: Reforming the culture of healthcare[37]:

tunnel vision — concentration on areas that are included in the performance indicator scheme, to the exclusion of other important areas

suboptimisation — the pursuit of narrow local objectives by managers, at the expense of the objectives of the organisation as a whole

myopia — concentration on short-term issues, to the exclusion of long-term criteria that may show up in performance measures only in many years’ time

measure fixation — focusing on what is measured rather than the outcomes intended

complacency — a lack of motivation for improvement when comparative performance is deemed adequate

ossification — referring to the organisational paralysis that can arise from an excessively rigid system of measurement

misrepresentation — the deliberate manipulation of data, including ‘creative’ accounting and fraud, so that reported behaviour differs from actual behaviour.

gaming – altering behaviour so as to obtain strategic advantage.

Returning to maps that have been coloured by targets based on assumed prevalences of dementia, I suggest we consider the need for “scientific pluralism” as outlined by the philosopher Mary Midgley:

 “The main need is that this initial map should be comprehensive – should say something about all the main factors that may be encountered34.” p38

This analogy between different maps and different sources of knowledge seems to me very useful. If you pause to consider how many different maps we might have for a landscape: a topographical map, a soil map, a climate map, a vegetation map, a road map, a historical map (of any period), a geological map, a temperature map, a built-space map, a river map etc etc It occurs to me that a map of estimated prevalences of dementia lacks scientific pluralism and that all the potential unforeseen consequences outlined in “Intelligent Kindness” may unfortunately apply:

“Different specialists may be talking about quite different rivers. These clashes are often worth investigating and they can lead to important illuminations. But they never mean that one of these specialties is always right and the rest are superficial or mistaken34.” p39

“We can eventually make quite a lot of sense of this habitat if we patiently put together the data from different angles. But if we insist that our own map is the only one worth following, we shall not get very far34.” p40


[1] Sheldrake, R. The Science delusion: freeing the spirit of enquiry. Published 2012, Hodder & Stoughton Ltd

[2] Paley, J and Lilford, R. Qualitative methods: an alternative view (February 2011) British Medical Journal ; 342:d424

[3] Scottish Government, HEAT Target 4 http://www.scotland.gov.uk/Resource/0039/00396886.pdf

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