GPs and the “Dementia Challenge”

On the 3rd October 2013 I was invited as one of the speakers at the Royal College of General Practice Annual Conference in Harrogate. The Debate was in the main auditorium and was entitled “GPs and the Dementia Challenge”

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Fellow Speakers included:

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The Debate was chaired by Dr Peter Deveson, GP.

We each had only a few minutes to present our argument. I presented the following ten slides (giving a perspective of experience in Scotland of incentivised case-finding) and finished by showing a short film made by me called “Fighting Talk”.

In a vote of hands after the debate the vast majority expressed concern about case-finding of Dementia and the Dementia DES (as it was then proposed).

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Here is my presentation:

SLIDE 1:
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Language used in dementia discourse is important.

SLIDE 2:
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As well as the fear that this kind of language generates in the general population and particularly the elderly it can also colour the relationships between policy makers and health professionals. As an example here is evidence given to the All Party Parliamentary Group on Dementia by the Head of Mental Health for the Scottish Government

SLIDE 3:
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SLIDE 4:
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This has been our experience in Scotland  which was a TARGET set in 2011 by Geoff Huggins encouraging the early diagnosis of dementia as part of a case-finding initiative in response to concerns about under-diagnosis. My experience has been that we have created a climate of fear in our elderly of being identified by cognition alone, and where the only possible route of maintaining autonomy is to avoid contact with NHS Scotland

SLIDE 5:
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Sube Banerjee, Professor of Dementia, University of Sussex, is a passionate advocate of proactive agency.

He said that the language of “screening” was unhelpful, but that it was “cruel to allow inaction to continue”

And that early diagnosis is crucial to end “toxic uncertainty” for both patient and family

Again this demonstrates the language being used.

SLIDE 6:
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Recent opinion does seem to have shifted from early diagnosis of dementia to timely diagnosis of dementia, however my concern is that Government policy lags behind here. For example, in the body of this report the word ‘early’ appears 40 times in total whilst the word ‘timely’ is mentioned 4 times.

SLIDE 7:
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There has been a lot of argument about the language of screening versus case-finding. Jeremy Hughes, the Chief Executive of Alzheimer’s Society, who is fond of military metaphors himself, has stated that case-finding is not screening,

SLIDE 8:
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Not everyone would agree. In a recent article in the International Journal of Clinical Practice Dr Chris Fox gives his view of the Direct Enhanced Service for Dementia:

“This new initiative is effectively a mixture of population screening and case finding despite the clearly articulated lack of recommendation for population screening reflecting the lack of robust evidence for either”

SLIDE 9:
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The important thing really is whether the Dementia DES will benefit patients. There is obviously a concern that it will divert already limited resources away from those most in need and also raise false hope for medical treatment even though the benefits of current drug treatments are small.

Despite there being a widely-held “folk belief” that drugs can modify the progression of dementia evidence shows that at best there is a small symptomatic benefit.

The problem is that we do not really know the balance of risk to benefit as so little research has been done on the potential harm associated with screening or case-finding. To “put the policy cart before the research horse” risks repeating the mistakes of the past in so many areas where an intervention which intuitively seems to be a “good idea” is later proven to cause significant harm.

This DES proposal reminds me of the Royal College of Psychiatrists’ 1992 Defeat Depression Campaign. Far from relieving the suffering of vast numbers hitherto hidden, many people with milder depression, which might have been self-limiting, were medicalised.

SLIDE 10:
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To conclude we must remember that cognitive impairment is not synonymous with dementia. Cognition has a continuous distribution in the population, which changes in a continuous manner across the life course in older populations – as there are no clear delineations between abnormal and ‘normal’, most very old people will have some impairment.

I finished my presentation to the RCGP Annual Conference, with this very short film:

Fighting talk from omphalos on Vimeo.

Prof Clive Ballard

In this Royal College of Psychiatry debate it was agreed beforehand that Prof Ballard could present first.

The debate centred on this RCPsych Motion: “This house supports the early detection of dementia”.

This meeting was not recorded for archive, though the organisers have since asked if “presentations” might be shared.

In what follows is my best (yet naturally rushed) capture of Prof Ballard’s argument. It may be that Prof Clive Ballard accepts the opportunity to display all his slides and associated words for the public.

clive ballard

Here is what I heard and recorded of Prof Ballard’s riposte:

Prof Ballard gave no declarations of interest in either the programme or on any slide. He did not mention any potential conflicts during his talk.

Whilst I understand the meeting was partly sponsored by LILLY it is not the case that any of the speakers on the day were paid for talks

Outline-of-conference-26-Se

Prof Ballard’s presentation:

First slide: “90% of people want an early diagnosis” (AD International, 2011)

First Slide: would seem to conflate: “early dementia” with “mild Alzheimer disease” and Prof Ballard continues to use these terms interchangeably throughout his argument.P1030874

First Slide: 50% of people never diagnosed” then elaborates with “Alzheimer Society Map” … “still only 46% diagnosed” thus “54% with dementia, 42800, are un-diagnosed”

Professor Clive Ballard: “Early Alzheimer’s disease: we should be diagnosing at this stage”

Prof Ballard gave no definitions at all at any time in his full argument today

Prof Ballard then moved on to talk of drug benefits: Cites RICHIE, CW et all, 2004

Prof Ballard stated at this talk that “anti-dementia drugs” [bring] “significant benefit for mild to moderate Alzheimer’s disease”. Prof Ballard mentions NICE.

Prof Ballard: “Alzheimer’s disease is a terminal illness with just 4 years to live.”

Prof Ballard: Combining acetylcholinesterase inhibitors with memantine “much better outcome” ATRI et al, 2008

Prof Ballard cites DOMINO study to support acetylcholinesterase inhibitors as “anti-dementia” drugs with “significant” effects [pers thought was I wonder what Jim Thornton would make of this? see: http://ripe-tomato.org/2012/04/24/memantine-andor-donezepil-for-moderate-alzheimers/

Prof Ballard said at this conference that for “mild Alzheimer’s disease a new generation of further symptomatic treatments are now coming available”

Prof Ballard finishes by stating his view that we should be diagnosing pre-clinical dementia and that services should now be offering the early diagnosis of “mild Alzheimer’s disease”. Prof Ballard said we should allow all “patients” to choose this option if they wish and that this is the basis of “informed consent and choice”…. and that “we should present this choice”. At no point in his ten minute argument or in his riposte did Prof Ballard mention potential harms of such an approach. Professor Ballard presented only potential benefits.

Prof Ballard stated that “we should not be consigning people to annual follow up as most people do not want such uncertainty”

Prof Ballard concluded his riposte: “I would say a timely diagnosis is the same as early diagnosis”

Royal College of Psychiatry Debate: “This House supports the early detection of dementia”

Debate-as-set-out

This debate was part of  the Northern and Yorkshire Autumn Conference of the Royal College of Psychiatrists and was held in Durham, on Friday 26th September 2014.

The motion was worded as “This House supports the early detection of dementia”.

For the motion was Professor Clive Ballard. Below is the biography he supplied for the printed programme:

Prof Clive Ballard Bio 26-9-14

Against the motion was myself. Below is the biography that I supplied for the printed programme:

PJG bio 26-9-14

In what follows I will present the slides and the text of my spoken words that were given with each slide of my main argument. Opposing debaters were confined to a ten minute argument so unfortunately a vast subject like this has inevitably had to be reduced. In my argument I decided that it was most important to concentrate upon definitions, evidence and ethics.

Just before you read my presentation [as given on the day] I want to offer my sincere gratitude to Dr Tom Hughes, Academic Secretary (Northern & Yorkshire RCPsych) for being a perfect host and most balanced Chair. I also want to offer my thanks to Prof Clive Ballard for debating this difficult subject with me and for his professional and gentlemanly manner. Whilst we disagreed most significantly on this motion I am certain that Prof Ballard is of the same view as me that this is a complex matter and not one for a simplified approach. I also want to thank the RCPsych organisers: Eva Davison, Division Manager, and Leanne Lane, Divisional Administrator. Both Eva and Leanne were most helpful and the meeting was organised with most professional care.

My argument against the motion [as I presented it on the day]:

SLIDE 1:
I am grateful to have been invited here today to oppose the motion: that this House supports the Early Detection of Dementia.

My name is Dr Peter Gordon and I have worked over the last decade as a Consultant in Psychiatry for Older Adults in NHS Scotland. I have had a longstanding interest in the issues surrounding early diagnosis

I hope to explain to you why a timely approach to the diagnosis of dementia is preferable

slide-1

SLIDE 2:
It is perhaps important that we try and establish definitions for the key words in this motion.

Let us deal with DEMENTIA first. You will be familiar with internationally accepted definitions for dementia. The essential features being that this is a clinical syndrome that manifests with SIGNIFICANT cognitive and functional impairments across a RANGE of DOMAINS of assessment.

For the remainder of my ten minutes I am going to address what we mean by “EARLY” and then lastly consider what we mean by “DETECTION”.

slide-two

SLIDE 3:
It has been said that “Early Diagnosis is Everywhere”.

In 2012 The Westminster All-Party Parliamentary Group published its report: Unlocking Diagnosis. In this report the focus was that on EARLY diagnosis of dementia. The word timely was not used once.

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SLIDE 4:
Scotland’s National Dementia Strategy included the early diagnosis of dementia.

Dementia Strategy

SLIDE 5:
Instrumental to Strategy in Scotland was HEAT Target 4. All NHS Boards in Scotland set about ensuring that this early diagnosis target was reached.

HEAT-target-4-and-ealy-diag

SLIDE 6:
At meetings similar to this one today, around this time (2011 onwards), we were presented with new criteria for diagnosing “early Alzheimer’s disease”, including the use of biomarkers:

Wright copy

SLIDE 7:
The new Lexicon offering definitions for Alzheimer’s disease were quickly criticised. A report in the Lancet said of DUBOIS criteria: “but they proceed as if such biomarkers are already available. Moreover, the presence of biomarkers must not be confused with the disease itself. Thus, this new framework for Alzheimer’s disease might represent a Tower of Babel rather than a coherent Lexicon.” New Lexicon

SLIDE 8:
Since 1962 we have had 12, yes 12 different terminologies for mild cognitive impairment. No matter what we call it, we have not yet found a way of accurately predicting which of these people will go on to develop dementia: Pre-dementia2

SLIDE 9:
Continuing the theme of definitions. It has been suggested by some academics and clinicians that early diagnosis “is simply screening rebranded”.

To complicate matters even more, policy makers have drawn a distinction between “screening” and “case-finding”.057Iphigenia-copy

SLIDE 10:
The World Health Organisation has clear definitions of screening. Drs Wilson & Jungner defined screening through a set of ten criteria. This specifically applied not just to population screening, but also to case-finding, opportunistic and specific target groups.WHO2

SLIDE 11:
This is criterion number seven:

“The natural history of the condition, including development from latent to declared disease, should be adequately understoodWHO3

SLIDE 12:
A few years back, in the BMJ, Marcus Richards and Carol Brayne asked “what do we mean by Alzheimer’s disease?” This is a question that I would contend that we do need to consider how ever obvious it may sound, and in particular for our most elderly old.What do we really mean by AD

 SLIDE 13:
“In its most common late onset form, the term Alzheimer’s disease is unlikely to refer to a discrete neuro-pathological entity..”Richards-and-Brayne1

SLIDE 14:
“but to a diffuse clinical syndrome that represents the gradual accumulation of risk factors over the course of life” Richards-and-Brayne2

SLIDE 15:
Professor Carol Brayne’s Team are researching this area.CropperCapture[1]

SLIDE 16:
NEITHER the US Preventative Task Force NOR the UK National Screening Committee recommend cognitive screening as there is “insufficient evidence to assess the balance of benefits and harms” US statement on cognitive Screening March 2014

SLIDE 17:
The “intuitive and nearly religious belief that early diagnosis is a good thing has not gone away: government and charities now lobby to promote early signs of disease and to “educate” primary care doctors” 062Iphigenia

SLIDE 18:
My main concern is that “unlike in screening, the concept of early diagnosis generally has no intellectual framework, rigour, or systematic reviews” 058Iphigenia-copy

SLIDE 19:
Nearly all policy leads have justified “early detection” as case-finding.

There has indeed been much debate on what constitutes case-finding and what constitutes screening.

The main difference is that there is an internationally-agreed definition of screening with a specification of ten criteria which must be fulfilled before any policy can be recommended.

Screening thus considers the potential for harm whilst case-finding does not.Case-finding-and-Screening-

SLIDE 20:
This is the cover from the BMJ when they launched their too much medicine campaign.

There is certainly a risk that we might over-diagnose “early dementia” given remaining uncertainties about pathological basis for dementias.BMJ-on-overdiagnosis

SLIDE 21:
In the current BMJ Professor Illife states “subjective memory complaints are a poor predictor of dementia syndrome … a case finding method that misses most cases is an unusual choice.” case-finding-fudge-19-Sept-

SLIDE 22:
This has not stopped the Alzheimer Society in their push that Policy should be based on Case finding. Their Chief Executive goes further and has stated that “Case-finding is not screening”. Unfortunately this view is diametrically opposite to that of the World Health Organisation'case-finding is not screening' JH July2013

SLIDE 23:
This is the recent voice of one “old man”, J K Anand a retired doctor

“I want my doctors to treat me when I seek their help instead of wasting their time looking for abnormalities that they have neither the time nor the ability to alleviate” J K Annand on case finding 31 aug 2014

SLIDE 24:
Last year this paper was published in our Yellow Journal. It covered ethics.ethics1

SLIDE 25:
I would just like to highlight the following:

    • Risk of making a diagnosis too early or too late because of reasons related to differences in age- or gender-related disease frequencies
    • Risk of making inappropriate diagnoses related to varying definitions of mild cognitive impairmentspectrum

SLIDE 26:
In a 2011 study by the Preclinical AD Workgroup, it was found that “out of 126 cognitively INTACT people with mean age of 83.7 years at death” Nearly-1-in-2a

SLIDE 27:
“post-mortem found that 53 out of 126 or 43% had pathology of pre-clinical Alzheimer’s disease” Nearly-1-in-2b

SLIDE 28:
Thus the risk of over-diagnosis in our most elderly is very real. 1 in 2 of our cognitively unimpaired elders could be wrongly labelled with Alzheimer’s disease.The-diseased-other-2

SLIDE 29:
Research has actually been around for some time that confirms the risk of mis-diagnosis, for example PALMERS study, the Path-through-life study and this study, the 2007 InDDEx study which concluded:

“the overall rate of progression from mild cognitive impairment to Alzheimer’s dementia in this randomised clinical trial was much lower than predicted” Evidence4

SLIDE 30:
Published recently in the BMJ Open was this study looking at CSF biomarkers and MRI brain scans as potential biomarkers. They found that “after the administration of a brief test of memory, MRI or CSF does not substantially affect diagnostic accuracy for Alzheimer’s disease in patients with mild cognitive impairment” Richard-E,-Schmand-BA,-Eike

SLIDE 31:
Delayed diagnosis concerns me but the response to this should be to aim for a timely diagnosis. The risks with “early” detection are mis-diagnosis, over-diagnosis and ultimately the potential for services to be so stretched that those who most need help, those with dementia, are disadvantaged. This is known as inverse-care.2-July-2014-dementia

SLIDE 32:
This is my last slide. It is my view that a lot of care and support can be provided for those living with dementia and that you can live well with dementia. Let us care even if as yet we cannot cure. This is why I support timely diagnosis of dementia. The evidence and ethical base for “early detection” has not yet been made.Living-well-with-dementia

In my Next POST I will present some of the argument that Prof Ballard presented at this Debate in support of the motion. For that full argument I would suggest you contact dr ballard.

Why I resigned from NHS Forth Valley

I resigned from work on the 6th June 2014. Some folk have been wondering why. Below I offer briefly the background to my decision to resign and why it was a matter of more than just principle.

I have worked for NHS Forth Valley as a Consultant in older adults in Clackmannanshire for nearly 13 years. This has been hugely rewarding for me and indeed a privilege to share in the lives of the wonderful elders of Clackmannanshire often in a time of need. The team of which I was part worked with dedication, compassion and professionalism even though at times we had to make difficult decisions due to the demands placed on our service. The support from colleagues in primary care, social work and third sector was greatly valued and our joint-working a source of satisfaction long before integration of services was ever considered.

I also wish to thank my employers for their support, particularly as I faced the steep-learning curve of the non-clinical aspects of today’s medicine and the shifting sands of political mandates and targets.

What follows is a brief account. It is to help explain and perhaps allow wider reflection, including my own. It seems to me that finding the words to express complex matters in writing helps me to “see” better. I am aware that this will be one account, open to challenge as none of us (thank goodness) will have the same view on life.

The factors involved in my resignation were complex. Life is complex after all. The beginnings of all this go back many years when I was faced with a difficult situation. I was concerned that our most elderly were more at risk of mis-diagnosis of dementia. This was at a time of incentivised targets for the early diagnosis of dementia (HEAT target 4 in Scotland) and increasingly I found that elderly patients were being diagnosed with “early Alzheimer’s disease” but in fact did not fulfil internationally accepted clinical definitions of dementia. My concern was that in the late stages of life individuals who would never develop dementia were being told they had it. What was in truth an increased risk of developing dementia was being expressed to patients, families and carers as a definitive diagnosis. My dilemma in speaking out about this was that very few others seemed to share my concerns. This seemed to me to be the case across a range of professions and jurisdictions.

My approach was first to discuss this with colleagues, which only confirmed that my view was that of the minority. I then raised the matter through the appropriate channels of line-management. Initially I was supported in raising my concerns. However this did not last: the most likely reason for support being withdrawn was that I was diverging from the majority.

From that time on my professional life got tough. I wrote an account of my concerns called “Peter’s Lost Marbles” the transcript of which I turned into a short film. This transcript and film were praised by the then Chief Executive of the Mental Welfare Commission and by the then Lead Policy Officer for Alzheimer Scotland. Both these National leads suggested that the transcript should be published in a journal and that the film version be used to encourage wider understandings of the complexities involved in the early diagnosis of dementia.

Dr Peter has one or two marbles left, and written on one of the more brightly coloured ones is the oath he took on graduation: primum non nocere (above all, first do no harm). Yet Dr Peter has found that his medical colleagues, Alzheimer associations and indeed politicians show little inclination to look at this singular marble.

NHS Forth Valley decided that an “External Review” would be held. It was documented ahead of this  External Review, by the Medical Director at the time:  “but the main concern is with PG [Peter Gordon]”. Increasingly isolated, and not included in strategic meetings to improve “joint working” it was difficult to know how to proceed. Through stress I was signed off by my GP and was off for 6 months. Interestingly having been off once before in 2004 (my only severe depression caused by discontinuation of Seroxat) I found that I was re-defined by some as a case of “recurrent illness”.  I have found it very difficult to escape this stigma and my experience has been that my profession is just as likely as any other to see “illness” before the person.

I have always taken a pluralistic approach to science and have been a lecturer in Medical Humanities. I am interested in ethics, professionalism, philosophy and their crucial contribution to the evidence-based medicine that I aspire to follow. It was my interest in professionalism and my concern that medical education was inextricably linked to marketing that led me to advocate greater transparency in financial conflicts of interest. I have pursued this with some determination. I have petitioned the Scottish Government for ‘A Sunshine Act’ and have argued that we should at least have transparency of financial interests equivalent to that which we expect of our parlimentarians.

My experience has been that it is not easy to pursue transparency in the health service. If anybody is interested much of this can be followed here.

The final straw for me was that I no longer felt that my concerns about staffing levels in the team of which I was part were being taken seriously.

I am deeply sad to have left NHS Forth Valley an institution I hold dear. I leave behind many friends, colleagues and special people. My career is now in limbo. But the main reason I write is in the hope of wider reflection and perhaps even a change of culture.  I have been honoured and privileged to be part of the lives of the wonderful and inspirational elders of Clackmannanshire. I have learned so much from them all.

Below is the last formal letter I received from Dr Peter Murdoch, Interim Medical Director of NHS Forth Valley. It is dated 21st May 2014. Dr Murdoch has kindly agreed that I can share this letter in its entirety on my blog. I have taken perhaps unusual route of making this open to all as I passionately believe that transparency is better even if the portrayal of me is not one that I recognise.  I accept any errors of judgment and frailties on my part (but these are not illness).

Letter-Peter-Murdoch-21-May

Link to letter to Dr Peter Murdoch, Interim Medical Director of NHS Forth Valley, from Dr Brian Robson, Executive Clinical Director for Healthcare Improvement Scotland, dated 22 May 2014

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 misinformation in relation to improvement work in the field of older people’s service in NHS Scotland. These behaviours are now having significant impact on the well-being of our staff and I have set out below a selection of the information 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 source of reliable information e.g. our website.

Whilst I appreciate the limitations 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 received 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, 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.

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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