“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.

The Politics of Dementia

At the recent leaders Debate, David Cameron commented specifically on the progress made in  increasing dementia diagnosis rates in NHS England:Leaders-debate2I have long had concerns about the ethics of such an incentivised target based approach. Dr Martin Brunet has given this personal view:MartinNHS England’s policy became known as “cash for diagnosis”:Leaders Debate, dementia 2 April 2015 (2)Dr McCartney in her current BMJ “no holds barred” offers her view regarding political involvement in matters like this:Politicians screening for dementia 4 Apr 2015I have tirelessly advocated for timely approach to the diagnosis of dementia. This has now been enshrined in the “Glasgow Declaration”

The Glasgow Declaration from omphalos on Vimeo.Leaders Debate, dementia 2 April 2015Professor June Andrew’s recently gave the following robust opinion which I do not share:LRB - cash for diagnoses - June Andrews To conclude, I share the concerns expressed by Dave Forrest:Leaders Debate, dementia 2 April 2015 (4)

Freedom to speak up

Freedom05I am very grateful to the Scottish Government for replying to me on behalf of Jamie Hepburn, MSP, Minister for Sport, Health Improvement and Mental Health. Below you will find the Scottish Government reply and my response to it.

In NHS Scotland I have not found freedom to speak up.

David Berry, Scottish Government

Dear Peter
I refer to your email correspondence of 11 January to the Minister for Sport, Health Improvement and Mental Health. I have been asked to respond to you.

Your main concerns in your email are about the ethics and relative risks and benefits of cognitive screening for older people, including those with dementia. I know that this is an on-going concern and note that you have previously raised this issue with Healthcare Improvement Scotland.

The implication of your email appears to be that you are concerned that there may be what is effectively a national programme of screening for people with cognitive impairment (including dementia) in acute, and that older people do not have the benefit of information or the option to opt out of such screening. I hope I can reassure you that no national programme of that kind has been initiated. HIS have for some time had a focus on improving service response on delirium and I understand you have information on that from HIS.

As you may know, we have a three year strategy to improve dementia care in hospitals, including a 10 point action plan to drive up standards of care. Our approach includes development of clear standards, ensuring strong senior and clinical leadership, getting right staff in the right place and giving healthcare staff the support and training they need to provide safe, effective and person centred care to every patient, every time. Appropriate identification and assessment of dementia is a part of this overall approach. This work is supported by the networks of Dementia Nurse Consultants and Dementia Champions.

The Focus on Dementia in Acute improvement programme, launched in July 2014, has a specific focus on leadership, workforce development, working as equal partners with families and minimising and responding to stress and distress. The aim is to improve the experience, safety and coordination of people with dementia, their families/carers and staff.  Progress to date includes the identification of executive and operational leads within NHS Boards and Boards are currently reporting on progress to date on implementing the 10 Care Actions.

In addition, you know that Healthcare Improvement Scotland’s inspections of care for older people in acute hospitals include a specific focus on dementia and cognitive impairment – and this continues.  You can access their most recent overview report on the HIS website.

With regard to your point about raising concerns and the implication that you feel that recording your concerns has been discouraged at times, I would reiterate that we welcome open debate and discussions around these and other matters and we would welcome the opportunity to get the value of your perspective directly if you should choose at any time to take up our offer to get involved in the implementation of dementia policy.

We do recognise your passion, interest and expertise in these areas and hope you will reconsider the offer.

With best wishes

Scottish Government 
Directorate for Health and Social Care Integration
Mental Health and Protection of Rights Division

Reply to David Berry

Monday 1st April 2015

To the Scottish Government
Directorate for Health and Social Care Integration
Mental Health and Protection of Rights Division
St Andrew’s House, Edinburgh

Many thanks for replying on behalf of the Minister for Sport, Health Improvement and Mental Health after I had written following the debate on Mental Health that the Minister led in the Scottish Parliament on the 6th January 2015. I attended parliament that day to observe the debate. I am writing to acknowledge your reply which I received on the 30th March 2015.

You state that it appears to you that I am “concerned that there may be what is effectively a national programme of screening for people with cognitive impairment (including dementia) in acute care, and that older people do not have the benefit of information or the option to opt out of such screening.” I am writing to confirm this is indeed my concern as an NHS clinician in Scotland who has followed closely developments in this area. It is clear that the screening for cognitive impairment in NHS Scotland fulfils all the criteria of the World Health Organisation definition of screening.

You say “I hope I can reassure you that no national programme of that kind has been initiated.” I am afraid that I am not reassured. Following inspections Healthcare Improvement Scotland ask that all NHS Boards “cognitively screen” all patients 65 and over admitted to acute hospitals. It is also the case that Healthcare Improvement Scotland measure NHS Board “compliance” with “cognitive screening”. Given the dual role that Healthcare Improvement Scotland have (for scrutiny and improvement), it is my view that, not only do patients have no choice whether to be screened or not, but hospital managers and every employee in each NHS Board are disempowered to question such an approach.

Regarding my “implication” “that recording my concerns has been discouraged at times”, the truth is that after raising concerns I felt that I had no other option but to resign from my NHS post of 13 years. This followed a letter from the Executive Clinical Director of Healthcare Improvement Scotland to the Medical Director of the NHS Board I worked for. This letter went much further than “discouragement”. This letter made all sorts of defamatory statements about my professionalism and character, none of which I accept. This has been my experience of raising concerns about patient safety and wellbeing in NHS Scotland. I am glad then to appreciate that the Cabinet Minister for Health, Wellbeing and Sport has indicated that Scotland will be considering the “Freedom to Speak Up” review by Robert Francis. I am very grateful to hear that the Scottish Government “welcome open debate and discussions around these and other matters”. Unfortunately damage has been done to my career in NHS Scotland for raising such matters.

I am grateful that the Scottish Government “would welcome the opportunity to get the value of my perspective.” Currently I do not have time for such a commitment but as I confirmed recently to you I am happy to help, if I can, on specific matters.

In summary, in NHS Scotland we currently find:

  • Cognitive screening (as defined by the World Health Organisation)
  • that the potential harms of such an approach are not being discussed
  • that the individual’s right to consent has been marginalised

I realise and appreciate that the Scottish Government, along with many other organisations, may continue to disagree with me on the above. However I wanted to put my view on record. As this is a matter of public interest I will share your reply and my response on my website Hole Ousia.

I want to thank you again for your reply.

Kind wishes
Peter signature

Dr Peter J Gordon

Cc: Jamie Hepburn, Minister for Sport, Health Improvement and Mental Health
Cc: Shona Robison, Cabinet Minister for Health, Wellbeing and Sport
Cc: Geoff Huggins, Acting Director for Health and Social Care Integration
Cc: Penny Curtis, Acting Head of the Scottish Government’s Mental Health and Protection of Rights Division

Cash for dementia

Today a friend of mine sent me a copy of this article by Dr Gavin Francis:LRB - cash for diagnoses - Gavin Francis

Professor June Andrews of the Dementia Development Centre gave this published reply:LRB - cash for diagnoses - June Andrews June Andrews

Dr Francis replied in turn: LRB - cash for diagnoses - reply to June Andrews

More than two years ago I shared my concerns with Professor June Andrews about the potential harms associated with the early diagnosis of dementia:June Andrews (7)

Professor June Andrews has remained consistent over the years in advocating the early diagnosis of dementia. I have long advocated a timely approach to the diagnosis of dementia. The debate between timely and early diagnosis is summarised here. A timely approach was recently enshrined in the Glasgow Declaration which has now been signed by 38 organisations across Europe.

dementia-services copy

Professor Andrews states that a failure to diagnose as early as possible should result in legal action. I am extremely disappointed that such an influential individual appears to fail to grasp the complexity of this area and advocates the practice of defensive medicine.

It is to Dr Francis’ credit that he has replied with such restraint.

ethics1 (1)