Re-labelling (and a bit)

I read this book recently [below].

I am approaching fifty. With age-related sight changes I find that my arms need to be longer!. So if I have misread “and a bit”  please do forgive me:

Now we are sixty and a bit

This book reminded my of a protocol issued by an NHS Board in Scotland:

4 april 2014 all over 65 MUST

As a doctor who tries his best to follow evidence-based medicine, I argued against this approach. I found that neither this NHS Board nor indeed NHS Scotland shared my concerns:

Brian Robson

With the recent publication of the Care Standards for Older People, the Chair of Healthcare Improvement Scotland confirmed:

Letter4b

It would appear to me that this “screening instrument” has been re-labelled by Healthcare Improvement Scotland

The 4AT was developed and promoted as:

010Tools

Recently the 4AT has been re-labelled as:

4AT validated UK Gov

The authors  4AT describe its key features:

(1) “brevity” (takes less than 2 minutes”), and

(2) that “no special training is required”

I should confirm that I use rating scales with patients as part of my daily professional life.

However I would never start out with a rating scale. To me, that would seem most disrespectful.

Rating scales can add to wider medical understanding. This is why, despite my awareness of any intrinsic shortcomings, that I continue to feel that they can be helpful.

The 4AT has recently been re-branded an “assessment test”. The 4AT was promoted for several years, with the support of Healthcare Improvement Scotland, as a “screening tool”. The validation studies, still underway, describe the 4AT as a “screening” tool.

Given that there has been no change to the test itself, I would suggest that this is re-labelling (and a  bit.)

 

Promises to listen to our elders

The “Care Standards for Older people in Hospital”, which replace the previous 13 year old standards, were published this month.

1345

As a doctor working in NHS Scotland whose work for twenty years has been dedicated to our elders, I submitted feedback on the initial draft. I started out by saying:

002-comment-on-care-standards-2015

With the recent  publication of the Standards I wrote to the Chair of Healthcare Improvement Scotland asking for clarification on the involvement of “older people” in the development of these NHS Scotland standards.

Letter1

In the Scotsman, the Chair of the the group developing the Standards, Dr Christine McAlpine stated that “we need to involve patients”:

Care Standards 12 June 2015a

In this article, Dr MacAlpine said:

Care Standards by Dr MacAlpine1

The Editor of the Scotsman summarised:

Care Standards in Scotsman - 9 June 2015b

Healthcare Improvement Scotland and Dr MacAlpine have stated the following:

care-standards-by-dr-macalpine2b

[please note: my appreciation is that 1345 may not actually 
represent 1345 separate individual comments. I say this as my 
two-page feedback on the drafts was separated into more than a 
dozen entries.  This would appear also to be the case for 
other "stakeholders"]

Having read though all the responses I found that none of the responses read as if ‘first-person’ comments. The comments read as if almost entirely by “stakeholders”. If so, this would represent Scotland’s elders by-proxy.

Unsure about this, I wrote to the Chair of Healthcare Improvement Scotland, for clarification. The following was confirmed:

Letter2

Healthcare Improvement Scotland have fully listed the “stakeholders” involved in the Consultation:

Consultation Feedback Report (stakeholders) Care Standards 2015

Having read carefully through all 1345 comments I am still left wondering whether the voices of our elders have been given reasonable opportunity to be heard? [proportionate to the experts, the stakeholders, and those directly tasked with authorising the final standards]

The ‘ladder of participation’ [below] has been widely cited in collective approaches to developing and drawing-up the best approaches to care:

ladder of involving our elders

In my letter to the Chair of Healthcare Improvement Scotland I asked for the average age of those directly involved in developing the Care Standards.

I also specifically asked if anybody deemed an “older adult” was part of the group who were tasked with drawing up these Care Standards for “older people”.

The reply I received from Healthcare Improvement Scotland stated that such information is exempt “in line with Data protection policy.”

Long before the final Care Standards were published I gave the following personal considerations on the draft Care Standards :

016 comment on Care Standards 2015

In the same week that the Care Standards for Older People  this analysis was published in the BMJ.

2

Haloperidol prescribing to Scotland’s elders

In a previous post the FOI returns on Haloperidol prescribing in NHS Scotland were shared.  This followed on from my consideration of a BMJ report regarding the scale and potential harms of  such “off-label” prescribing to our elderly in hospital.

Since that time I have had a response from Professor Jason Leitch, National Clinical Director, Healthcare Quality, Scottish Government:

Letter from Prof Leitch

Today I have sent this reply to Professor Leitch:

To: Professor J. Leitch,
National Clinical Director, Healthcare Quality,
Healthcare Quality and Strategy Directorate
Planning and Quality Division
St Andrew’s House,
Regent Road,
Edinburgh EH1 3DG

8th June 2015

Dear Professor Leitch,
I was most grateful to receive your letter of reply dated 2nd June 2015.

I thought it best to reply to you to clarify the focus of my concerns. I wish to try and keep my reply short and focussed on the points you raise.

Point ONE:
You state that the Scottish Clinical Advisor for Dementia informed you that the “off-label use of Haloperidol for dementia is not especially unusual”. This would seem to diverge from the this BMJ change page made by NHS England’s National Clinical Director for Dementia, Professor Alastair Burns (I attach the full paper)

Dont use

You cite SIGN 86 guidelines on Dementia. These guidelines were issued 9 years ago when it was stated that “they will be considered for review in three years.” SIGN 86 is specifically for dementia and not delirium. The SIGN website indicates that there is no current plan to update SIGN 86 nor to introduce a Guideline on Delirium:

SIGN 86 was criticised in this research: 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. I find it disappointing that an outdated and flawed guideline is still the basis for prescribing in dementia.

Ethical issues

Point TWO:
Haloperidol prescribing is part of the “Comprehensive Delirium pathway” introduced across NHS Scotland by the Scottish Delirium Association (SDA) and Healthcare Improvement Scotland (OPAC). You will be aware of this as I note that you are giving the key-note talk this week at the conference: Transforming delirium care in the real world”. Over a year ago the Secretary of the Scottish Delirium Association asked me to summarise my views on delirium improvements happening in Scotland. I did so and shared these with the SDA and with OPAC. I am disappointed to note that no reply has been forthcoming. I attach this summary for you with this letter.

Transforming delirium care in the real world

Conclusion:
It is welcome to hear that the Scottish Government are taking actions here. It is the case, by Scottish Government figures, that antipsychotic prescribing is increasing year-on-year in NHS Scotland. I seek improved care for individuals with delirium and dementia. I am concerned that current approaches, along with staff shortages and increased demands on staff time, are making it more rather than less likely that our elders may receive antipsychotic medication that can result in significant harms.

Yours sincerely,
Dr Peter J. Gordon

Included with letter:

“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.

The Glasgow Declaration: “the progressive test”

As a tireless advocate for a timely approach to the diagnosis of dementia I was delighted to be there in person when the “Glasgow Declaration” was signed. This rights-based declaration enshrined the right for a timely diagnosis as well as promoting dignity and autonomy.

The Glasgow Declaration from omphalos on Vimeo.

Those that signed the declaration included members of the Scottish Government, Alzheimer Scotland and the Mental Welfare Commission. Since then, over 50 organisations across Europe have signed the “Glasgow Declaration”.

Glasgow declaration April 2015

In my last post I considered consent for “cognitive screening” and whether the current NHS Scotland approach fulfilled the criteria for “the progressive test” as set out by the Scottish Human Rights Commission.

009 Progressive Test

Six months on from the launch of the Glasgow Declaration, I want to ask if recent developments in Scotland, by (1) Alzheimer Scotland and (2) the Dementia Services Development Centre fulfill the criteria necessary to pass “the progressive test”?

004 Progressive Test

(1) In their latest “campaign” Alzheimer Scotland are advising us that we should “have difficult conversations” with our elders. In this campaign, Alzheimer Scotland promote “early diagnosis of dementia” which was not part of the Glasgow Declaration that Alzheimer Scotland signed in October 2014. I have asked Alzheimer Scotland about this, and my questions can be read here. As of yet I have had no written reply though the CEO, Henry Simmons, has kindly offered to meet with me.

(2) Professor June Andrews, Director of the Dementia Services Development Centre has recently suggested in a published letter that “the sooner someone sues a GP for the failure to diagnose as  early as possible the better”. This suggestion has generated a vigorous debate. The suggestion by Professor Andrews would seem to fully diverge from the Glasgow Declaration.

My concern is that both of the cases highlighted above would not pass “the progressive test” as set out by the Scottish Human Rights Commission.

croppercapture1

Ethics, to do the best we can from omphalos on Vimeo.

“The progressive test”

This commentary has recently been published:008 Progressive TestThe commentary starts out stating that:006 Progressive TestBut makes equally clear:007 Progressive TestA helpful definition of human rights is given:002 Progressive TestThe Scottish Human Rights Commission outline five key questions that comprise “the progressive test”004 Progressive Test One of those five questions relates to:005 Progressive TestNHS Healthcare Improvement Scotland has, over the last few years, introduced mandatory “cognitive screening” for our elderly (generally considered those aged 65 and over). Such “cognitive screening” which I consider as a well-intentioned mandate, is nevertheless an example of a “blanket policy”.

I have found raising the subject of consent for cognitive screening a “difficult conversation” to have in NHS Scotland.020 Progressive TestAs an NHS Consultant I use rating scales every day. As such I have come to appreciate what they can and cannot reveal about a patient.

Using brief scales for “screening”, rather than as part of an overall assessment, I consider a different matter. For screening, ten WHO criteria are required to be met. The UK National Screening Committee and all extant UK guidelines have concluded that these criteria have not been met for cognitive screening.

Notwithstanding, Scotland has chosen to follow “improvement methodology” to guide its approach. Here Scotland is a pioneer.

This is the policy that was introduced by NHS Forth Valley following the explicit recommendations of Healthcare Improvement Scotland:NHS Forth Valley 8on mandatory screeningThe current NHS Scotland hospital guide on consent makes clear:018 Progressive TestWhere consent is defined as:019 Progressive TestIn this week’s Lancet  there is a an editorial that advises that there is “wisdom in the bigger picture”:014 Progressive Test 015 Progressive TestThe above ethos is very much in accordance with Hole Ousia. The philosopher Mary Midgley was one of the first to raise the potential consequences of increasing specialisation (here, might we consider the division of the medical humanities from day-to-day medical care):013 Progressive TestThis week’s Lancet editorial gives a timely reminder of a broader, rather than narrower, appreciation of cognition.016 Progressive Test I have tirelessly offered reminders why a “brief” “screening tool” may likely struggle to be “patient-centred”:017 Progressive TestIt has been argued that cognitive screening in Scotland, using “cognitive screening tools”, is not screening at all but rather “identification”, or indeed “detection”.

I argue that a better approach is for NHS staff to assess patients using their professional skills (trained over many years) and to be given time to do so. This means following time-honoured clinical assessments rather than taking shorthands. I should reaffirm that a rating scale may be part of this overall assessment. I just argue that it should NOT be the starting point.

Robert Louis Stevenson said in one of his finest philosophical essays:010 Progressive TestThe philosopher Mary Midgley, now aged 95 years, has said:011 Progressive TestIn Summary: I am of the view that mandatory cognitive screening introduced by NHS Scotland – as part of “improvement science” – does not meet the requirements of “the progressive test” as set out by the Scottish Human Rights Commission.

“Can’t – won’t – no point”

This article published in the London Review of Books by Dr Gavin Francis has generated much discussion:LRB - cash for diagnoses - Gavin Francis

This BMJ poll asked about the ethics of NHS England’s approach:BMJ poll

Professor June Andrews, “International Dementia expert, consultant, teacher, nurse, writer and researcher” submitted the following response which was published alongside the original article by Dr Francis: LRB - cash for diagnoses - June Andrews

Not surprisingly, the suggestion that GPs should be sued (introducing a stick as well as the carrot of the £55) attracted a lot of responses from GPs. Dr Margaret McCartney, GP in Glasgow, Medical author and regular columnist in the BMJ, replied to Professor Andrews:Mgt replies

Professor June Andrews replied initially on social media, stating:JA quote

Professor Andrews then submitted a fuller reply on Dr McCartney’s blog, which can be read here along with further replies. Professor Andrews appears to have been surprised by the reaction to her forthright suggestion. I have followed the discussions on social media. The responses came from a number of quarters and were largely polite and sought only to better understand the reasoning behind Professor Andrews suggestion.

Professor Andrews final response was: Well the mob got me back. Tons of docs against one nurse. All over now. Never bashed you. All I can do is block you all bye bye”

I wonder if Professor Andrews is a step behind the debate. For many years “early diagnosis” went unchallenged and was the basis of both the Scottish Government Dementia HEAT target and Dementia Strategy. Scotland pioneered here and advocated that the rest of the UK should follow.023

A number of individuals, including myself, GPs, public health experts, carers and campaigners, advocated that a timely approach was preferable. This was because we understood the potential for harm with a blanket policy based on “early diagnosis”. Following this the Scottish Government changed its approach. In October 2014, I was fortunate to be present when the “Glasgow Declaration” was signed which enshrines a timely approach to the diagnosis of dementia:

The Glasgow Declaration from omphalos on Vimeo.

As of today, 50 organisations across Europe have now signed this declaration:Glasgow declaration April 2015

I have always admired Professor Andrews as a gutsy, plain-speaking ‘champion’ for those living with dementia. However I think she made a mistake in targeting GPs in this way and en masse. To advocate litigation, in such a complex area, risks increasing the practice of defensive medicine. The main issue with defensive medicine is that it is not patient-centred and I am sure that this is the very last thing that Professor Andrews would want.

One GP, in reply to Professor Andrews stated in beautifully clear language why this is not a straightforward issue:“Problem is it is impossible to actually diagnose dementia until unable to perform normal tasks. Otherwise only “cognitive impairment” which may not lead to dementia at all.” I have covered this here.

At the height of the enthusiasm for the HEAT target for “early diagnosis of dementia”, I had experience of a GP colleague who I think embodied some of the risks of the approach today advocated by Professor June Andrews.

I was asked by this GP regarding a patient who had evidence of mild cognitive impairment but no evidence of dementia: “Should we not use Alzheimer’s disease as working diagnosis if history indicates it even if [the person] is not at stage of dementia.”

“My question was not whether [this patient] has dementia associated of Alzheimer’s type but rather if [this patient] had Alzheimer’s disease so that we could give appropriate education and support [this patient] and [this patient’s] family and possibly cognitive enhancers at an early stage as per current guidance.”

My reply was as follows: “Regarding the potential for treating [this patient], current pharmacological options are licensed for the ‘treatment of mild to moderate dementia in Alzheimer’s disease.’ The SIGN and NICE guidelines are also for dementia. I have previously sent you the evidence that these drugs do not prevent the development of dementia in any patients. I would also like to reiterate that the provision of support is not dependent on any diagnosis but determined by the needs of any individual patient.”

Although some of this discussion focused around medical issues I agree with Professor Andrews that so many other aspects of care may allow individuals with dementia to live well. However this does not justify the application of a diagnosis before it can be made with reasonable confidence. croppercapture1

The four final slides come from this most helpful paper:003

For me, this paper highlights the complex issues involved in the diagnosis of dementia. We now have 50 organisations across Europe who now appreciate this complexity. It has been my experience that my primary care colleagues understood this from the start whereas the specialist leads appeared not to.

To conclude: Professor Andrews’ characterisation of the response of GPs in their approach to the diagnosis of dementia as “Can’t – won’t – no point” is unfair and unhelpful.

004 005 006 007

“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

“two-thirds of diagnoses would be given to healthy people”

This Scottish report “Adding Life to Years” is now rather old. It once asked about ageism:Ageism in NHS ScotlandcThis week the UK National Screening Committee has expressed significant concerns about screening tests for cognition:Awful & inaccurate 8 April 2015In NHS Scotland if you are 65 and over and need to be in hospital, you will be “screened” for “cognitive impairment”. All NHS Boards in Scotland are being measured, in terms of “compliance” for such “screening”.Increased-screeningWithout consent, and the explanation of what these simple and “brief” “screening tools” can and cannot determine, and further explanation of the potential consequences, I would argue that NHS Scotland is taking an experimental leap, where any reasonable effort to give informed consent has been marginalised.

I have huge trouble with the prevailing idea that “identification” is somehow completely distinct from “screening”. The World Health Organisation covered this matter very clearly a few years after I was born. That work, in my view, is just as relevant today.

The Scottish Government has recently issued this reassurance:aaThe Mental Welfare Commission has confirmed that they support the approach of both the Scottish Government and Healthcare Improvement Scotland.

“The art grows larger and the science grows smaller as I think about it”

Unfortunately I could not make this recent conference. This debate was one that I had wished to attend. I have debated with Professor Alistair Burns before: however it was the subject of this particular debate, given the philosophy behind Hole Ousia, that captured my interest:Science has little placeI have just come across this most thoughtful reflection, following the debate by Professor Susan Benbow, Chair of the Ethics Committee of the Royal College of Psychiatrists: CropperCapture[1]CropperCapture[2]CropperCapture[3]And here is a reply to Professor Susan Benbow by Dr Dave Jolley:CropperCapture[4] CropperCapture[5] CropperCapture[6] CropperCapture[7] CropperCapture[8]I may have missed this conference debate but this communication between two colleagues heartens me enormously.