We are far more than our labels

“National Improvement” work for older people has focused on Frailty and in NHS Scotland we are reminded by healthcare Improvement Scotland to “THINK frailty”

This short film is based on “thought for the day” by Anna Magnusson, BBC Radio Scotland, Friday 5th August 2017.

Music is “Seeing the future” by Dexter Britain (under common license)

We are far more than our labels from omphalos.

Improvement science and consent: a failure of NHS Governance

I am an employee of NHS Lothian and have been ‘sign posted’ to the “New Capacity and Consent intranet page: important information for all staff.”

This is a screenshot taken on Friday 2nd June 2017:

The Capacity and Consent intranet page begins by reminding all NHS Lothian staff of the ‘Obtaining Consent’ Policy (2014):

The NHS Lothian ‘Obtaining Consent’ Policy (2014) informs staff that “failure to secure consent may constitute assault under common law in Scotland”.

All NHS Lothian staff are also reminded that “acquiescence when a patient does not know what the intervention entails, or is unaware that he or she can refuse, is not consent”.

Two years ago I wrote about national improvement work undertaken by Healthcare Improvement Scotland for older people in hospital in NHS Scotland and my concern that “compliance” had replaced consent.

Given my experience that the guidance from my employers (NHS Lothian) on consent and the explicit requirements of “compliance” mandated by Healthcare Improvement Scotland seem to go in opposite directions, I wrote seeking further guidance. I have had this reply from Healthcare Improvement Scotland.

In conclusion: I would suggest that a failure of NHS Governance in Scotland has led to a confusion about the rights of older people to give consent.

‘Have you ever noticed that certain days are injury days?’

I was filming in our garden today as the sky was beautiful, the spring bulbs colourful, and the green as fresh as can be.

By chance, an NHS Forth Valley lorry passed in front of the camera. My heart missed a beat. The lorry was advertising the Minor Injuries Unit.

Three years have nearly passed since I resigned from NHS Forth Valley. When an employee with NHS Forth Valley I championed an ethical and evidenced-based approach to the diagnosis of dementia and for transparency in terms of financial interests of staff.

As a consequence of this, I myself left NHS Forth Valley with injuries. Not physical injuries but just as real.

Looking back, I am proud to have tried my wee best to put ethics at the very heart of my practice. To stand up for those who may not be as able or who may feel frightened to stand up for themselves.

The title of this film comes from the novel “Vinegar Girl” by Anne Tyler

The music is by Steven Lindsay – “Exit Music”

To learn from and cherish

In the Scottish Herald on the 1st October 2016:

the-elderly-should-be-valued-and-respected-1-oct-2016-2

reminded us all that:

the-elderly-should-be-valued-and-respected-1-oct-2016-1

and suggested that we:

the-elderly-should-be-valued-and-respected-1-oct-2016-3

Rebecca McQuillan  worried, as I do, that:

the-elderly-should-be-valued-and-respected-1-oct-2016-4

Our treasured NHS and those who educate us might consider:

the-elderly-should-be-valued-and-respected-1-oct-2016-5

As an NHS doctor for those who I value and respect I worry about the promulgation of a reductive language of loss. I often hear our older generation described as a “challenge” and that complex, and unique situations have been reduced to a single word, such as “frailty”, “capacity” and “delirium”. Language evolved over tens of millennia to avoid such simplification.

Rebecca McQuillan closes beautifully:

the-elderly-should-be-valued-and-respected-1-oct-2016-6

I shared this post with the British Medical Journal. There was 
an interesting reaction on social media to my post and to those made 
by others by the original columnist:

"some truly bizarre responses to what was a mainstream common 
on acute frailty"

"I am thinking of changing my BMJ column from 'acute perspective' 
to 'everybody must get Stoned'"

“It deprives you of your identity, and supplies another, simpler one”

Submitted as a rapid-response to the BMJ, 6 March 2013: http://www.bmj.com/content/341/bmj.c4670/rr/634772

As a psychiatrist for older adults I have noticed not just a scientific but also a cultural change in our appreciation of memory function as we age. Ten years ago those waiting for my clinic had a range of reasons for presenting but today one predominates: concern about memory loss.

It is not uncommon to hear that whilst in the waiting room our elders are anxiously practising with their family: who is the Prime Minister and how to spell WORLD backwards.[1]

My concern is that a reductionist approach to memory loss in our elderly is now prevailing and that it is not based upon available evidence. The timely diagnosis of dementia is important but we must remember what the evidence tells us: that there are a range of reasons for mild memory loss. It is important that we do not ourselves forget that early amnesia may be age-related and non-progressive for a significant majority of our elderly.

Everywhere I now look, whether it is in the BMJ, the latest promoted symposium or in the general media, ‘Dementia of an Alzheimer’s type’ is referred to as ‘Alzheimer’s disease’. With current imperatives for early diagnosis (and increasingly cognitive screening) any early amnesic memory loss is most likely to be labelled as ‘early Alzheimer’s disease.’ It seems that for our elderly the disease model has displaced the clinical classification as set out in ICD10 and DSM-V.

Does this matter? We hear about ‘Alzheimer’s’ (as it is generally now shortened) every day. The definition we assume can only be robust as huge amounts have been spent on research. The director of research at the Alzheimer’s Society recently concluded 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.”[2] It is also quite clear that the pharmaceutical industry, after 40 years of extensive research have concluded that neural plaques have a complicated and far from specific relationship with ‘Alzheimer’s disease’[3]

Currently being promoted are products specifically marketed for ‘early Alzheimer’s disease’ both as tests to assist ‘early diagnosis’ and dietary or vitamin symptomatic treatments. The market is considerable and will no doubt tap into a culture of fear that has been heightening for several decades.[4]

The risk is that far too many of our elderly will be wrongly labelled as diseased: that would indeed be a world spelt backwards.

12umb

This is a copy of a Rapid-response post to the BMJ

Dr Hannah Zeilig gives a fascinating talk in this area: “What do we mean when we talk about dementia?” It starts about 16 minutes in:


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

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

[3] George, D et al Through the amyloid gateway, Lancet Vol 380 December 8, 2012

[4] Zeilig, H. Dementia as a cultural metaphor, The Gerontologist. Feb 2013 doi:10.1093/geront/gns203

The contributions of those “retired” often prove invaluable

The contributions of those “retired” often prove invaluable

BMJ submission by Dr Peter J Gordon.

2nd September 2015

Yesterday I was at a consultation event held by Healthcare Improvement Scotland which sought wider views on a proposed national approach to “Scrutiny” of health and social care in Scotland. At the meeting I met a number of individuals who had been designated “retired” on their name badge. I was not surprised to find that during the course of the consultation event, the contributions of those “retired” proved to be invaluable.

Returning home on the train I thought about this a little more. Names like J K Anand, L Sam Lewis and Susanne Stevens, all regular submitters to the BMJ rapid responses came into my mind. All describe themselves as “retired” and one happily calls himself “an old man”. The contributions by retired folk have always struck me as having a different quality to those by people who are still employees of today’s NHS. In “retirement” there may be a greater freedom to ask questions of prevailing approaches. Our older generation also has great experience which should be considered as “evidence” in itself.

Yet in my job as a doctor for older adults, I see the world around me as seeming to do its best to reduce our elders. The language used in discussing our elders commonly denotes some sort of loss. For example the “guru” of Healthcare Improvement Don Berwick talks about the “Silver Tsunami”. Other healthcare leaders talk of “epidemics” and “challenges”, implying that our elders are a burden to younger generations. To address these “challenges” the healthcare improvers, it seems to me, are devising shortcuts. Today these are often termed “tools” and may be part of “toolkits”.  I have even heard healthcare improvers discussing the need to “invent” a “tool” for patient centredness. I think our elders, or those “retired”, might consider this to be particularly ridiculous.

So I would like to say three cheers for the “retired” folk. To discourse they bring wisdom, to the prevailing methodologies they are more willing to ask critical questions, and when it comes to cutting through to what matters, being true to oneself, our elders are superior to many, if not most, policy makers.

       The following are quotes by Raymond Tallis:

Raymond-Tallis-(30)

Raymond-Tallis-(32)

Unpacking the miracle of everyday life (parcel 2) from omphalos on Vimeo.

“As a critical friend”: awareness campaigns

I have just read:009 as a critical friendIt begins: [we]010 as a critical friend011 as a critical friendAs a doctor who openly asks questions I see great value in being a “critical friend”:008 as a critical friendThe Alzheimer Scotland Strategic Review outlines significant progress:012 as a critical friendThe current campaign by Alzheimer Scotland encourages “difficult conversations”:2 Feb 2015 Alz Scot early diagnosis aThis Alzheimer Scotland campaign promotes early diagnosis. As a critical friend I have expressed concerns about this campaign:014 as a critical friendA few months before this campaign was launched, Alzheimer Scotland:015-as-a-critical-friendThe Glasgow Declaration, signed by the then Cabinet Minister for Health, Alex Neil, enshrined “timely diagnosis” (below). It has now been signed by 1815 individuals and 50 organisations across Europe. This international agreement does not advocate early diagnosis.Glasgow-declaration signed Dr Margaret McCartney asked in her book “The patient paradox”:  001 as a critical friendand offered this concern:002 as a critical friendAge related memory loss (that is not dementia) can be a reality for us all as we age. It is however very far from inevitable. Such mild impairments generally follow a parabolic distribution through life. The following book by Douwe Draaisma covers the science of this:005 as a critical friendDr McCartney raised the following consequence of “awareness campaigns”:004 as a critical friendand concluded that:003 as a critical friendIt would seem to me that is virtually impossible to open a newspaper or watch any form of broadcast media today without being made aware of dementia or “Alzheimers”.

Such awareness may have unintended consequences:007 as a critical friendNeil Hay, SNP candidate for Edinburgh South, has followed the awareness campaigns by Alzheimer Scotland, a charity also based in Edinburgh:    Neil Hay 03Last week on social media, Neil Hay, SNP candidate for Edinburgh South expressed that older folk:018-as-a-critical-friendPerhaps then the question posed by Dr McCartney should not be:001 as a critical friendInstead we might ask, all as ‘critical friends’, the evidence and ethics behind such “awareness campaigns”.

Furthermore, in seeking health, should we be more wary of simplified messages that might carry unintended consequences such as anxiety, fear, ageism and stigma.

“battling” [the] “horrible”

Last Sunday I watched and listened to the Secretary State of Health on BBC One:Jeremy Hunt2 The Secretary of state began:battling horrible - J Hunt1 Politicians often use military metaphors when discussing health and care:battle definitionOur Prime Minister, David Cameron, has, along with the Alzheimer’s Society, led this “fighting talk”:

Fighting talk from omphalos on Vimeo.

Jeremy Hunt, the Secretary State of Health, continued from Westminster:They tend - J Hunt1I was struck by the Secretary of State’s use of the word “tend”. Here is the dictionary definition:tend definitionIs it accurate, based on epidemiology and established science, to say that those over the age of 70 “tend to have” dementia? Might this add to fear? Might this even be a form of ageism?

Dr Margaret McCartney said in her recent BMJ column ” we need a revolution where patients truly come first, not politicians.”NHS emancipation from government 18-4-15

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

Confusion is everywhere

Published as a BMJ letter January 2013:

It seems that there is an awful lot of confusion about. It also seems to be the prevailing impression that it is our elderly who are most prone to confusion. The recent BMJ discussion about the screening for dementia has highlighted that it is both incorrect and potentially stigmatising to consider such confusion as the preserve of our older generation. (1)

At least six areas of confusion do seem prevalent when it comes to our understanding and collective approach to memory loss in old age:

1. General confusion: The general population is increasingly using the word “Alzheimer’s” instead of “dementia.” This is hardly surprising when you consider:

2. Professional confusion: NICE and SIGN Guidelines for Dementia both contain definitions of dementia and of Alzheimer’s disease, yet in the body of the guidelines, the terms are frequently used interchangeably. (2)

3. Confused ‘education’: Much post-graduate medical “education” is sponsored by the Pharmaceutical Industry. Much awareness raising by charities is also backed by the Pharmaceutical Industry. Many political imperatives are influenced by lobbyists for the Pharmaceutical Industry. We are certainly confused about where the line lies between these activities and “marketing”? (3)

4. Confusion between research and clinical agendas: Advances in research are too often extrapolated prematurely into a general clinical setting by well intentioned clinicians who may also be responding to the clamour of the latest press-release. (4)

5. Confused about risk: The communication of risk is fundamental to medical practice but is undoubtedly difficult. Every intervention has the potential for benefit and for harm. We are so keen to see the former that we sometimes forget to look for the latter. (5)

6. Confusion about science: Scientific evidence must be taken in context. Many universities are responding to this by making the Medical Humanities an integral part of their under-graduate medical curriculum.

The dictionary definition of confusion is: “a feeling that you do not understand something or cannot decide what to do.” We must resist the temptation to respond to confusion with over-simplification and instead find a way to acknowledge complexity.

CropperCapture[1]

(1) Observations: There is no evidence base for proposed dementia screening. Martin D Brunet, Margaret McCartney, Iona Heath, Jonathan Tomlinson, Peter Gordon, et al. 345:doi:10.1136/bmj.e8588 (Published 27 December 2012)

(2) NICE Guideline on Dementia. CG42. First published Nov 2006 and SIGN Guideline 86: Management of patients with dementia. 2006

(3) Margaret McCartney. The Patient Paradox. Pinter & Martin Ltd. 2012

(4) George, D.R; Qualls, S.H.; Camp, C.J. and Whitehouse, P.J. Renovating Alzheimer’s: “Constructive” Reflections on the New Clinical and Research Diagnostic Guidelines. The Gerontologist; doi:10.1093/geront/gns096

(5) Gigerenzer, G. Reckoning with risk: Learning to live with uncertainty. 2002. Penguin books.