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.

CropperCapture[1]

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

Reply by Tripathi and Kumar

This is the BMJ rapid-response reply by Assistant Professor Shailendra Mohan Tripathi Ambrish Kumar, Department of Geriatric Mental Health, King George’s Medical University, Lucknow, India. It is dated 15th April 2014.

“Anti-dementia” drugs improve the outcome
The author has been very judgmental in reaching a conclusion that anti-dementia drugs neither modify the disease nor improve the outcome. I differ on his statement that anti-dementia drug do not improve the outcome. It is true that anti-dementia drugs do not stop the progression of the disease but the statement regarding non-improvement in outcome is a little harsh. It is clear that there remains no medical or pharmacological treatment for dementia especially Alzheimer’s disease that can reverse or stop the progression of the disease. Anti-dementia drugs, particularly the cholinesterase inhibitors for people with mild to moderate Alzheimer’s disease and memantine for people with moderate to severe Alzheimer’s disease, are intended for symptom management to help improve cognition, function, behaviour, language and quality of life. Even combination of the two can be tried with very beneficial effect. By working with Geriatric patients I have come to know that symptomatic improvement can be brought in patients with Alzheimer’s dementia. This may not be that beneficial for other kind of dementias.

Improvement in patients with dementia is based on many factors. Recent studies have investigated whether specific domains of cognitive or non-cognitive symptoms respond to different treatments. An analysis of three mild to moderate Alzheimer studies showed that memantine had particular benefits in domains of orientation, following commands, praxis and comprehension (Mecocci et al., 2009). Gauthier et al. in 2008 found non-cognitive benefits for delusions, agitation/aggression and irritability through anti-dementia drugs. At the same time it was found that cholinesterase inhibitors can help behavioural symptoms by improving attention and concentration. Feldman et al. (2001) showed particular benefits for apathy, anxiety and depression.

Judicious use of antidementia drugs is required by an expert. Doses, best time to start of antidementia drugs are important which can be addressed only with experience. A patient must be free from delirium, his physical problems should be properly taken care of otherwise the patient will be at receiving end of adverse after effects of the antidementia medications. A patient on antidementia drugs would be managed better by the care giver than the patient off the antidementia drug. Clinically there is definite improvement with antidementia drugs on activies of daily living and behavior which is not possible without improvement in cognition.

References:
1. Gauthier S, Loft H and Cummings J (2008) Improvement in behavioural symptoms in patients with moderate to severe Alzheimer’s disease by memantine: a pooled data analysis. Int J GeriatrPsychiatry 23: 537–545.
2. Mecocci P, Bladstro¨m A and Stender K (2009) Effects of memantine on cognition in patients with moderate to severe Alzheimer’s disease: post-hoc analyses of ADAS-cog and SIB total and single-item scores from six randomized, double-blind, placebo controlled studies. Int J Geriatr Psychiatry 24: 532–538.
3. Feldman H, Gauthier S, Hecker J, Vellas B, Subbiah P and Whalen E (2001) A 24-week, randomized, double-blind study of donepezil in moderate to severe Alzheimer’s disease. Neurology 57: 613–620.

My reply, submitted as a BMJ rapid response is here

Delirium Screening

Some people have asked me to try and summarise my considerations on delirium assessment. In what follows I will also try and outline an alternative approach to the one currently being recommended across Scotland following Healthcare Improvement Scotland (HIS) Inspection visits.

1. DETECTION: I have been asked the entirely understandable question as to what approach I would advocate for detection of delirium if we were to depart from the Healthcare Improvement Scotland (HIS) mandate to screen all those 65 or over for “cognitive impairment”. Here, I shall try to make clear that my principle concern is with screening rather than with the brief rating scales themselves. These scales have a place, even if not yet fully validated. However, in my view, and that of NICE, they should be used for clarification, and for on-going assessment, of those who are determined – by professional nursing and medical assessment (including routine history and examination and collateral history) – of being at risk. It was in this sense, the patient-centred sense, that I used the word “holistic”. I apologise that I was not clearer about this in my lengthy piece, “the faltering, unfaltering steps”.

I use the word “holistic” in the general sense: time-honoured professionalism of person-centred nursing and medical care. This is the “professional excellence” that I am certain that we all support and wish to improve. I would like nurses and doctors to have training in delirium, and so provide a reasonable level of such care, ahead of deciding if a rating scale for triage is necessary. I am not aware that any RCT study has been done to compare: (1) current standard approach (which evidence demonstrates fails to detect 50-70% of delirium), with (2) brief screening tests, with (3) improved staffing levels, improved staff time and education (education, that the likes of HIS are undertaking) on delirium and cognitive disturbance?

2. THE 4AT SCREENING TEST: I was recently provided with two papers on the 4AT screening test which I now have had the chance to read closely. I had not intended commenting specifically on any one screening test as there are many that are currently being studied in the acute hospital setting. However, I thought it would be helpful to look at this study published in the journal of Age and Ageing by Bellelli et al: “Validation of the 4AT, a new instrument for rapid delirium screening: a study in 234 hospitalised older people” as it highlights some of the considerations I raised in my blog. I would suggest that the other paper, set specifically in a Stroke Unit is less generalisable in terms of HIS Improvement work, so I will make no further comment on it.

My view, in terms of being an evidence basis for Improvement Work in Scotland, that the title of this paper may be misleading. The Bellelli study only considered rapid delirium screening” whereas the 4AT test also “screens” for “cognitive impairment”. As the 4AT screening test is used for both we can only, at best, state that it has been validated for the former.

One of the four main features, following brevity of the test, is that “no special training is required”. In the Bellelli study the 4AT assessments were “performed by experienced physicians, though no specific training in the 4AT was given. Further research is needed to assess the ease of use of 4AT among other professional groups of varying levels of seniority.” Furthermore the Bellelli study “did not assess inter-rater reliability for the 4AT or the reference standard assessment” or the “clinical outcomes in relation to ‘possible delirium’ as assessed by the 4AT.” The Bellelli study was not set in A& E or hospital front-door settings. Additionally, as stated in the paper “because of insufficient power, we were not able to analyse the characteristics of misclassified (false negative and false positive) patients.” Thus we do need to be cautious in generalising the findings of this “validation” study.

I retain the view that we must also measure metrics such as patient/clinician acceptability before we can be confident for general application of any test.

The Bellelli paper concludes “future studies in larger populations and other centres should further assess its performance, including the determination of whether detection of delirium using the 4ATmay improve the clinical outcomes of patients.”

3. DEMENTIA and DELIRIUM: Screening for cognitive impairment. This has yet to be validated for the 4AT. As you may know I have concern about the delayed diagnosis of dementia. However I am also concerned about the potential for wrong diagnosis. Here, in the acute setting we have an almost intractable problem that I wonder if the 4AT can address. We will need to wait for further studies. However the incorporated AMT4 test for cognitive screening is one of the most basic (some would say “reductionist”) tests available to clinicians. How it then performs when one has delirium has not yet, to my satisfaction, been established. The Scottish Government have confirmed in a letter of response to Anne Begg, MP, that “there are no plans at present to introduce such a national screening programme for Scotland.”

I have noted that the use of screening tests (AMT4, CAM or 4AT) is being measured in many Scottish health Boards in terms of each Board’s “compliance”.

I must confirm that I have no issue with rating scales. Some are better than others. I use them all the time, to the best of my ability, in an evidenced-based way. However if used for screening or “case-finding” – though I note that Scottish Delirium Association (SDA), Older People in Acute Care (OPAC) and Healthcare Improvement Scotland (HIS) generally refer to “screening” – most public health experts would recommend that they need to be very carefully considered (as per the ten Wilson & Jungner World Health Organisation criteria). Please note the clear definitions of screening by the World Health Organisation and that this does not need to be whole (entire) population.

4. TIME: Taking delirium seriously should involve taking appropriate time. I am certain that we all agree on this. We also know the reality of staffing resources. Should we not be spelling out this shortfall to Scottish Government as part of improvement recommendations?

5. INVOLVEMENT:
The point I was making in my blog was that, for improvement work like this, we need to engage beyond clinicians and improvement staff. I know that HIS have fully engaged with those who have experienced delirium. I suggest that we also need to give all those over 65 an opportunity to give their considerations. There are of course many others, in professional disciplines across medicine and beyond acute care, who may wish to have an input. I also wonder if the Mental Welfare Commission may have a view of starting out with a screening test without any perceived need (as per HIS recommendations) for individual consent?

6. ETHICS. There are unforeseen consequences of tests that are about the person, being, sentience rather than a unitary bodily process (I have reasoned many times why taking a pulse, for example, has quite different implications to that of cognitive testing.)

One unforeseen consequence of wider cognitive screening is the heightening of fear, as expressed clearly by Dr Iona Heath (Past President RCGP) and John Sawkins (VOX). It is possible our elders may become even more fearful of hospital if they understand that they will be cognitively tested whether they agree or not. Just today it was reported that a woman who was turned down by ATOS for benefits – as based on a screening questionnaire – then took her own life. The Mental Welfare Commission have investigated this and in the report express concerns about a short-cut approach to overall and proper understanding of this woman’s medical history and life situation. This is a most extreme example but we must consider the wider effects of screening however well intentioned and reasoned by the clinical argument. For those who want to learn more I would thoroughly recommend that you might read The patient paradox by Margaret McCartney.

7. INVERSE CARE: With any screening programme there is a potential risk of unintentionally precipitating inverse care. Since mandatory screening was introduced following HIS inspection, referrals to the older adults’ liaison service in my Health Board area have risen to 230 per month and the majority of these individuals are referred on for further community assessment. The community services are already stretched. The risks are that community services may struggle to meet the need of those who need it most and that those with mild cognitive impairment are wrongly medicalsised as suffering from dementia.

8. PEER REVIEW: A recent correspondent asked that I submit my considerations for peer review in formal academic journal. It is my view that those behind improvement work on delirium in Scotland need to do this first and I am of the view that this might be an important element of improvement work before policy recommendations are embarked upon. The Clinical Standards, on which screening recommendations for delirium have been based, are 12 years old. The involvement of Healthcare Improvement Scotland in pilot work, as guided by the Scottish Delirium Association is most welcome. The limitations of other avenues of communication about this improvement work have been pointed out to me. Yet we must acknowledge that OPAC, HIS and SDA are using other avenues extensively (tweets, blogs and videos), thereby inviting responses.

To conclude, I have no major issue with the use of validated scales as a form of assessment. However I agree with NICE that evidence, and wider consideration is currently not there to support use for screening or case-finding. Yet this has become the basis of Healthcare Improvement Scotland recommendations, recommendations that have been made with the guiding support of the Scottish Delirium Association.

One and the same

In this short film I will explain to you why I have come to understand that case-finding and screening are actually one and the same.

One and the same from omphalos on Vimeo.

All around us national clinical leads and disease champions argue that early detection policies are exercises in ethical case-finding. They insist that such policies are not screening. This is important because criteria have been set for the introduction of any national “screening” programme. It appears that by calling any programme “case-finding”, these criteria can be ignored.

In this film I will briefly look at the historical development of case-finding and screening. This provides clear evidence that these terms have been consistently used one and the same. This film will argue, along with Dr James Maxwell Glover Wilson, that the ten principles that are considered necessary by the World Health Organisation for screening, should also apply to case-finding. One and the same.

As an approach, case-finding emerged in the first few years of the 1930’s: “to designate the pre-clinical stage of a tuberculous pulmonary infiltration, when it is demonstrable by x-ray examination but does not yet manifest itself clinically by symptoms or signs perceptible to the patient or by the usual methods of classical physical examination.”

The success of this case-finding approach led to its use for detection of other diseases. By 1968 the World Health Organisation had listed ten requirements necessary for the introduction of a public health screening programme. Note that this list refers to case-finding. Screening and case-finding are one and the same.

  1. The condition sought should be an important health problem.
  2. There should be an accepted treatment for patients with recognized disease.
  3. Facilities for diagnosis and treatment should be available.
  4. There should be a recognizable latent or early symptomatic stage.
  5. There should be a suitable test or examination.
  6. The test should be acceptable to the population.
  7. The natural history of the condition, including development from latent to declared disease, should be adequately understood.
  8. There should be an agreed policy on whom to treat as patients.
  9. The cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole.
  10. Case-finding should be a continuing process and not a ‘once and for all’ project.

Into the next decade and case-finding moved into many other areas.

In 1970 diabetes was considered as one area that might benefit:
“Many are truly asymptomatic, even on direct questioning. Despite this, diagnosis of the diabetes is not usually difficult, for random or post-glucose blood sugar levels are sufficiently high to allow of no doubt. Nevertheless, when screening by blood sugar level is employed for case finding, diagnosis becomes more problematic.”

As the 1970’s progressed case-finding of hypertension became a priority.

Hypertension in general practice
21 April 1984
“SIR, I support Dr John Coope’s comments on the lamentable state of management of patients with hypertension, benefits can be achieved from treatment. The practical answer surely lies in case finding.”

Into the 1980s and case-finding methods are underway to detect dementia:
Do general practitioners miss dementia in elderly patients?
Oct 1988

Some of the difficulties of this were discussed at this time and reveal that the Wilson & Junger principles for screening were considered necessary:

“We have made some progress with the problem of assessing mild dementia. However, there are as yet no widely accepted criteria for mild dementia, nor are there any clinically useful biological markers. Consequently, whether normal ageing, benign senescent forgetfulness and mild dementia lie on a continuum, or whether mild dementia is categorically distinct, is uncertain.

Thus, prospective longitudinal studies using a range of reasonably standardised diagnostic criteria are imperative, as they may show which of the existing criteria most effectively distinguish those cases which progress from those which remain stable.”

Those who know me and my writings will realise that it was with the early diagnosis of dementia where my interest first started in case-finding and screening, one and the same thing. It was clear to me that early diagnosis of dementia could not just side-step the ten principles as established by the World Health Organisation. However it took the support of doctors like Dr McCartney, Heath, Brunet and Cosgrove (the Grassroot doctors) to reason why a timely approach to the diagnosis of dementia would be a better, and less harmful approach than case-finding or screening, one and the same.

The UK National Screening Committee have been approached by policy advisors to tabulate similarities and differences between screening and case-finding. Having looked at these carefully it is clear to me that the majority of differences are in fact interpretational and demonstrate that case-finding has been, in recent years, wrongly separated from screening. The main cost of this is that the ten principles need not to be followed.

For example with screening one is generally invited and formal information of benefits and harms are shared. This generally does not happen with case-finding.

For example with screening there is generally formal quality assurance whilst with case-finding this is generally not so.

Time to finish but first let me dispel a myth. It has been argued that for case-finding one has already “symptoms” but with screening generally one does not. This is a false divide. Symptoms are not all or nothing and may or may not be experienced. Dr Wilson and Jungner made no distinction here and the World Health Organisation agreed.

Screening and case-finding are one and the same thing.