Improvement goggles

What follows are three slides taken from a talk given by Dr Brian Robson, Executive Clinical Director, Healthcare Improvement Scotland and IHI Fellow, given at the Edinburgh International Conference of Medicine in September 2016:



 

I most certainly agree that culture is important. But what kind of culture? Is it healthy just to follow one? In this case the Institute of Healthcare Improvement, Boston.

The “Improvement Goggles”, it would seem, come as part of the “toolkit”?

As a doctor who is passionate about improving care it matters to me that I follow science that does not risk being pre-determined.

It is important that there is philosophical depth to the approaches that we take to healthcare.

I understand the overwhelmingly good intentions of all those involved in “improvement science”, however I would suggest that we should carefully consider the potential benefits and harms of a most determined “one organisation” approach that starts and ends with reductionist and mechanical algorithms.

 

 

Courage to care













 

Why I have decided to leave Social Media

I have been asked by a few friends why I decided to leave Social Media.

For sometime I had a twitter account @PeterDLROW but I closed this account on the last day of 2014. The-Lumen---on-twitter

There are several reasons why I have decided to leave social media behind however the primary one is that as an NHS employee in Scotland I do not feel safe in using social media.

CropperCapture[4]

The personal consequences for me in raising ethical considerations on twitter to try and help improve care for our most elderly have been most significant. The organisation that appears to have struggled most with my ethical questioning has been Healthcare Improvement Scotland. There are individuals who have not shared my views who have associations with Healthcare Improvement Scotland and may have contributed to this response.

ggg

I miss twitter for sharing with others my many interests which include film-making, the arts, architecture, medical humanities and most things outdoors.

How-drs-use-twitter-7-Dec-2

 

 

[Out-of-office replies] and “disconnect”

This blog post was written after reading the report on the review of the quality of care at Aberdeen Royal Infirmary. I was both shocked and saddened to read this report:

ARI1

In reading this report I was struck by how often staff mentioned the word “disconnect”:

Entry 9.24 of the report seems to capture the disconnect, with words used like “disengagement” and “detached”. It also raises the experience of frontline staff where concerns were “not being satisfactorily addressed” or “being met with silence”:

ARI4

This report left me reflecting on my recent experience as an NHS doctor working in Scotland. I have two examples of such “disconnect”.

The first example consists of replies from a very senior NHS manager. This communication related to my considerations about care for the elderly whilst in hospital:

Sent: 16 January 2014
[my secretary] has helpfully jogged my memory and I must apologise. I dropped the ball having received your correspondence whilst out of the country in December ….and never caught up fully!

Date: 2 July 2014
I am out of the country for the next week and there will be a delay in responding to your email. If your message is urgent please contact my secretary

Date: 2 October 2014
I am at a conference for the next few days. If your message is urgent please contact my secretary

Date: 9 October 2014
I will be out of the office  [dates redacted] If your message is urgent please contact my secretary

My second example concerns communication about service pressures with a service manager:29 May 2014 Cassidy

James cassidy 3 June 2014 James Cassidy 4 June 2014 James cassidy 5 June 2014 James Cassidy 6 June 2014

My experience is that this “disconnect” is not new. Here is a very short film that I made over a year ago:

Disconnect from omphalos on Vimeo.

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. I leave with an unblemished record.

It 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.

As a consultant 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.

NHS Forth Valley decided that an “External Review” would be held. I was unaware that it had been documented ahead of this  External Review, by the Medical Director, Dr Iain Wallace that“ the main concern is with PG [Peter Gordon]”.

Increasingly isolated, and no longer 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 certain Consultant Old age Psychiatrist colleagues 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 with NHS Forth Valley was that I no longer felt that my concerns about staffing levels in the team of which I was part were being taken seriously.

Update: March 2017:

NHSG003: Dr Peter J Gordon written submission on NHS Governance in Scotland:

I want to very briefly summarise my experience relating to two of the requirements of the NHS Reform (Scotland) Act 2004, which requires all boards to demonstrate
that staff are:

(1) involved in decisions;

(2) treated fairly and consistently, with dignity and respect, in an environment where diversity is valued;

I have worked as an NHS doctor in Scotland for 25 years. In 2014 I resigned from NHS Forth Valley after working for 13 years as a Consultant because of my
experience that the Board were not complying with the above. I now work for NHS Lothian. I plan to retire early because of my experience when working in NHS Forth Valley.

On my resignation I received this feedback from patients, carers, colleagues and staff in many sectors. I have actively spoken up for patients when I have come across harm (unintentional or otherwise). I spoke up regarding two main areas:

(a) the Timely diagnosis of dementia

(b) Transparency of competing financial interests in NHS healthcare staff

Timely diagnosis has now been adopted right across Europe.
This approach had no support whatsoever in NHS Forth Valley. In terms of the 2004 Act I was not “treated fairly and consistently, with dignity and respect, in an environment where diversity is valued” for advocating a timely approach to the diagnosis of dementia.

Parliament: PE1493: A Sunshine Act for Scotland.
This was taken forward by me as an individual as a petition to the Scottish

The petition was closed last year after a Public Consultation found the Scottish Public supported my petition. In terms of the 2004 Act I was not “treated fairly and consistently, with dignity and respect, in an environment where diversity is valued” by NHS Forth Valley or other NHS Boards for advocating such transparency.

At the time before and after resigning from NHS Forth Valley I was not “involved in decisions” as required in the 2004 Act. There were communications about me with other NHS Boards such as Healthcare Improvement Scotland and NHS Tayside. I now believe I was “blacklisted” and that my references were influenced negatively by input from senior staff in NHS Forth Valley.

I have long since realised that there is no possibility of individual redress for me regarding my past treatment as an NHS Scotland employee. It is my hope that the committee will be able to encourage a genuine change in culture so that other employees working in NHS Scotland feel empowered to put patients first. It is essential that this is the case even when that employee finds him/herself in the minority amongst his/her colleagues or indeed challenging government policy.

CANTABmobile

It is now over four years since I found myself under pressure from a local GP to expand my diagnosis of Alzheimer’s disease to include people who were not found to have symptoms of dementia:

Dr Neil Houston 01

I spent a considerable amount of time examining the evidence behind current guidance which I was following and explained this to Dr Houston but he persisted:

"My question was not whether this patient had dementia associated 
of Alzheime'rs type but rather if he had Alzheimers disease so 
that we could give appropriate education and support to him and 
his family and possibly cognitive enhancers at an early stage 
as per current guidance."

I then reminded Dr Houston that 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 had previously sent him the evidence that these drugs do not prevent the development of dementia in any patients. I also reiterated that the provision of support is not dependent on any diagnosis but determined by the needs of any individual patient.

Dr Houston was a local advocate for CANTABmobile and wrote to me describing it as:

     "a very sensitive test for Alzheimer's disease."

Following this I felt it important for patient safety to establish the evidence behind this test.

Posted below are the written communications I made and received about CANTABmobile

CANTABmobile-homescreen-log

Sent: 20 October 2012 21:25
To: ‘contact@privatehealthscreen.org’
Subject: CANTABmobile

I am writing to ask if you know anything about CANTABmobile which one of our local GP practices is piloting.

The company can be found here: http://www.cantabmobile.com/

The company, Cambridge Cognition have been promoting locally and I think also UK wide?

The CANTABmobile film states: ‘early detection makes the journey easier’ and the promotional videos say it is ‘highly sensitive and specific’. I have been unable to find further data about this screening test though I do know CANTAB has a long history in pharmaceutical studies. It might be a perfectly reasonable and robust test but I would like to know far more about it. My concerns are heightened as conceptually early memory loss is difficult.

Just wondered if you knew anymore about CANTABmobile?

Kind wishes,
Peter Gordon
NHS Psychiatrist for Older Adults

CANTABmobile-homescreen-log

From: David Hart [David.Hart@camcog.com]
Sent: 25 October 2012 17:36

Dear Peter,
Thank you for your email.

Please find attached (above) the science rationale document for the CANTABmobile system.

Additional details are also online at www.cantabmobile.com including an FAQ section at http://www.cantabmobile.com/support.asp concerning the key features, applications and background science relating to MCI and Alzheimer’s disease.

I hope this is helpful. Please call me on 01223 810 722 if you have any additional queries or would like to discuss any aspects of our work in more detail over the telephone.

With best wishes
David

David Hart
Senior Business Development Manager
Cambridge Cognition Ltd.

Daily Mail, front page, 5 November 2012:

Fast-track-dementia---5-Nov

To: David Hart,

Senior Business Development Manager,
Cambridge Cognition Ltd, Tunbridge Court,
Tunbridge Lane, Bottisham, Cambridge, CB25 9TU

Tuesday 27th November 2012

Dear David,
I am really grateful to you for sending on the paper (NMI-008) ‘The use of CANTAB PAL in Alzheimer’s disease’ by Dr Andrew Blackwell, Chief Scientific Officer for Cambridge Cognition. I have now had a chance to read this and to read all the FAQ on your promotional website. I also watched your promotional films which I thought were well put together.

CANTABmobile is an exciting technology with an established base, over many years in research, rather than in clinically based medicine. I can see a role for it. However I have some further questions and some specific concerns. If you do not mind, I shall set these out below?

Your homepage displays the headline “A new touch screen for dementia.” This is, at best, misleading. CANTAB is one single domain (PAL) of neuropsychological tests and is sensitive for MCI not dementia. In fact you state this in your FAQ: PAL is not a diagnostic test, and a diagnosis of dementia can only be made by a qualified physician.” So why do you not state this clearly on your homepage?

The sub-headline on your homepage carries this quote: “Is my memory normal, doctor?” This would suggest you are promoting your test as a screening test. In lines of the WHO[1] you are offering what they term ‘Selective Screening’ defined by them as:

“We use this term for the screening of selected high-risk groups in the population. It may still be large scale, and can be considered as one form of population screening.”

As I understand it, there is no evidence-base to support cognitive screening and it is not supported by any professional guideline. I note that you avoid the term ‘screening’. Perhaps anticipating concern about screening, you do add the caveat: “available only to GPs / healthcare professionals.” The trouble I have, which does not reassure me, is that many GP’s and healthcare professionals have not heard of MCI.

The World Health Organisation, offer ten criteria for screening and it is quite clear to me that at least two of these criteria are not met for screening/early detection of dementia:

Firstly we have “The natural history of the condition, including development from latent to declared disease should be adequately understood.” Mild cognitive impairment and early dementia overlap and both the patho-physiology and natural histories are ill-understood and beyond simplification. As Allen Frances has stated, the risk of false-positive diagnoses of dementia becomes extremely high the earlier one tries to detect memory loss[2]. There has been much recent debate about screening and in particular the harms and benefits associated with breast-screening. This debate has revealed that most people had not heard of DCIS (Ductal carcinoma in-situ) before the debate about the harms of breast-screening reached the wider press; I am sure that most people have not heard of mild cognitive impairment. The parallels are obvious.

Worldwide, large scale RCT’s, have reproduced the finding, that at very worst, no more than 50% of those with ‘amnesic MCI’ go on to develop dementia. Those in this large group of our elderly, generally have mild static loss that sometimes gets better. This is 50% of the patients testing positive on CANTABmobile. Your promotional material makes no mention of this anywhere.

In this context you paradoxically promote that CANTABmobile will help the ‘worried well.’ Your test though, given your headline messages, is likely to worry a large group of our elderly who have non-progressive mild memory loss. The consequences of a false-positive diagnosis of dementia can be life-changing and suicide is a potential risk.[3]

I agree with Dr Margaret McCartney that “The screening of people for disease causes enormous problems which don’t often get acknowledged – not even to the people having the tests.”[4] In your promotional material there is not one reference to potential for harm. Ethical considerations are at the heart of good medical practice and apply to all interventions however well intended they may be. Our elderly cannot be truly informed if Cambridge Cognition presents only benefits and certainties. It is a legitimate question to ask if there are potential harms with CANTABmobile?

I support the science you offer but insist that a lot of unknowns remain. To be fair to our elderly these need to be acknowledged. Given these unknowns, I would like your evidence base to include properly piloted studies of CANTABmobile as a screening tool in primary care. It is this evidence base that is vital along with epidemiological and ethical considerations. Meantime your test has been promoted in my local NHS area and one GP practice is already using it.

One possible consequence, counter to actual intention, is that such screening will increase the fear of ‘Alzheimer’s’. There is also the potential to re-define what we mean by Alzheimer’s disease by wide application of a screening test i.e. a cultural change in diagnosis. Not to be ignored is the inadvertent risk of heightening stigma in our elderly (where cognition becomes all defining) – what Stephen Post calls a ‘hypercognitive culture.’

David, having reviewed the literature you have provided and considered it carefully in the context of my interest in ethics, medical humanities and the neuroscience of Alzheimer’s disease I am concerned that technology like the CANTABmobile is being promoted before its full place in widespread clinical settings is properly understood.

Finally, I am concerned that ‘informed consent,’ based on your promotion, is impossible.

We all want to pick up progressive memory loss that leads to dementia and give as much support to this group as we possibly can. But early memory loss is a most complicated area. It needs a very careful approach. There are a great deal of unknowns, and just as many misunderstandings: my apprehension is that this is the sort of milieu that has the potential to make society disproportionately fearful of ageing.
Yours sincerely,
Dr Peter J. Gordon

CANTABmobile-homescreen-log

From: Gordon Peter 
To: Grassroot doctors
Sent: 08 December 2012
Subject: CANTABmobile

I thought you might be interested in this.

The first screenshot is of the homepage, headline advert for CANTABmobile as on the web (date 24 Nov)

The second screenshot is from today (date 8 Dec)

Previously I sent you a copy of the letter I sent to Cambridge Cognition which I sent on the 27th November.

You will notice that CANTABmobile have changed their headline from “a new touch screen test for dementia to “a new touch screen test for memory impairment.”

CANTABmobile-screening-test

Am I alone to be worried about this? This company has widely promoted a test for “piloting” across the UK but they seem not to know or are undecided what their test actually tests? Especially as primary care doctors are implementing a screening test that they are ‘educated’ about by the promotion of the company,

Yours sincerely, Peter

CANTABmobile-homescreen-log

From: David Hart [David.Hart@camcog.com]
Sent: 10 December 2012 
To: Gordon Peter

Dear Dr Gordon,
Many thanks for taking the time to give us your feedback about CANTABmobile.

You are quite right that screening for dementia is a thorny issue – we are very aware of the debate and as a result we do not promote nor recommend the use of CANTABmobile for general population screening. Our intention is that CANTABmobile is used to aid referral decisions by allowing doctors to make an objective assessment of memory in patients who are seeking help for memory complaints. I accept that our position with respect to screening was perhaps not clear enough on our website, and we have now added an FAQ to explicitly address this point.

We have also changed the wording on the website to clarify that CANTABmobile is a test of memory impairment, not dementia per se.

Thank you again for your interest in CANTABmobile.

Yours sincerely,
Cambridge Cognition

The letter below was published in the BMJ the 15th October 2013:

cantabmobile-its-misleading

Implementing the Scottish Patient Safety Programme in Primary care - Dr Neil Houston

I have been reflecting that it may have been the claims initially promoted by Cambridge Cognition which made Dr Houston so reluctant to accept the evidence that I presented him:

Dr Neil Houston 03

This surprises me as Dr Houston has been National Clinical Lead for Safety Improvement in Primary Care, Healthcare Improvement Scotland:

Dr Neil Houston and Dr Brian Robson


[1] Wilson J. M. G, & Junger, G Principles and Practice of Screening for Disease. World Health Organization 1968

[2] Frances, A. Psychology Today. Published 16 February, 2012

[3] Brian Draper, Carmelle Peisah, John Snowdon, Henry Brodat Early dementia diagnosis and the risk of suicide and euthanasia Alzheimer’s & Dementia 6 (2010) 75–82. New South Wales, Australia

[4] McCartney, M. The Patient Paradox 2012. Pinter & martin Ltd. p6