Cash for dementia

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

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

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

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

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

dementia-services copy

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

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

ethics1 (1)

The mechanical language of Health Improvement

The following words appear frequently in the language of Health Improvement:

ToolsTraffic Lights Dashboards toolkits

It is my view that Healthcare Improvement needs to consider the potential consequences of the widespread use of such mechanical language.

Dementia: Global Progress: Local impact “Exhibitor, sponsorship and promotion options”

Tickets are now on sale for this Alzheimer Scotland Conference:AS001

In terms of “dementia awareness” I have recently offered my personal view on the current Alzheimer Scotland “campaign” which encourages Scotland to have  “difficult conversations”. Dementia can occur in any age from middle life onward but proportionally these “difficult conversations” will significantly involve Scotland’s elders.

Below, taken from the Alzheimer Scotland promotion, is the Chief Executive Officer of Alzheimer Scotland raising awareness of sponsorship opportunities associated with “Dementia Awareness week”:AS003

If you click on the screenshot below – taken from Alzheimer Scotland’s conference promotion – you will find “Exhibitor, Sponsorship and Promotion options”: AS005

This is what the 2015 Alzheimer Scotland conference offers sponsors:AS006

In an entirely different way to Alzheimer Scotland, Dr Margaret McCartney is not afraid of raising “difficult conversations”. Here is a link to Dr McCartney who recently appeared on BBC Radio 4 with Scotland’s First Minister, Nicola Sturgeon. The First Minister has read Dr McCartney’s published books.  Dr McCartney sent me her first book before it was appreciated as the vitally important work that it is. Margaret-McCartney

In Chapter 10 of “The Patient Paradox” Dr McCartney considers “Charities and favourite diseases”. Here are a few passages that  have given me courage to question a big charity that I hold dear:

“As a medical student and then junior doctor, I had a happily innocent view on healthcare charities. Some wanted to speak or send us information about ‘their’ illness or disease.” p159

The uprising of ‘awareness’
“Healthcare  charities have positioned themselves as the advocates of patients and their families. They have taken a lead role not just in political campaigning but also in ‘awareness’.

“What harm could this do? How, possibly, could one argue that ignorance is better than ‘awareness’?” p166

“Ostensibly well-meaning campaigns have gone woefully under-examined for their side-effects. It is an enormous collective blind spot” p166

Does awareness work?
“. . . unless you have good evidence – unless you can say that you have decent proof – you have no idea if you are doing more harm than good.” p167

AS002

The following are speakers at this Alzheimer Scotland Conference:

AS007

Do we care enough about consent?

This leaflet is widely available to patients in NHS Scotland including in the waiting room outside my consulting room: 039

Its first page defines consent as follows:038

This is the front page of the current BMJ:021

It is reporting on a legal ruling which has implications for consent as summarised by the editor:051052 053 054

Previously Sokol has said:013

I have had a longstanding interest in consent:015

Consideration of patient consent goes back to the earliest days of the NHS (and indeed before):032

I have previously highlighted how this difficult area becomes even more complex when we are considering cognitive screening:014

Scotland led the way with an incentivised target-based approach to the “early diagnosis” of dementia. The following is from one of the earliest expert meetings:First Dementia Strategy Meeting

A few years later the Scottish Government were sharing widely league tables:002

The Scottish Government commended its own approach to the Westminster Government:How to improvegeoff-huggins4 Geoff Huggins3

It was this robust approach that led me to consider whether the consent to assessment of the individual patient might be significantly affected by an external target. It was at this stage I contacted the National Clinical Leads for dementia, specifically highlighting my concerns about consent:Dementia Leads1

The Scottish Lead for Dementia replied:Dementia Leads2

I was delighted to attend this Conference in Glasgow which culminated in the signing of a rights-based approach to dementia:034044

At this Conference, the Chief Executive of the Mental Welfare Commission gave an address. Mr Colin McKay reminded us that for any individual deemed to lack capacity certain principles should apply. This includes having one’s own wishes listened to:
020

The previous Chief Executive of the Mental Welfare Commission offered his personal view on consent to examination. For many reasons I believe that cognitive screening is a very different activity to measuring blood pressure:056

I have also been in conversation with parliamentarians regarding consent to cognitive screening. In my letter to Dr Simpson, MSP, I highlighted the following points:

  • my concerns are specifically about obtaining consent to cognitive screening
  • Cognitive screening does not fulfill World Health Organisation criteria (Wilson & Jungner)
  • the UK National Screening Committee do not advise screening for cognitive impairment

Richard Simpson2

This is the view of the former Cabinet Minister for Health & Wellbeing:At liberty

I have also asked the UK’s leading Dementia charities about consent:042

I have recently written to Alzheimer Scotland about their current campaign: “Lets talk about dementia”. Disappointingly this appears to have back-tracked from the Glasgow Declaration and is advocating early rather than timely diagnosis. The “difficult conversation” as suggested by Alzheimer Scotland appears to me to trivialize consent:033

I have also had a number of “difficult conversations” when trying to raise issues of consent:Dr Brian Robson

One of the many reasons why this matters is that cognitive screening is not risk-free. 046047

Off-label anti-psychotic prescribing has increased year-on-year in the elderly across Scotland.

It is my view that those promoting improvement methodologies in NHS Scotland are currently not taking consent sufficiently seriously. It appears that I am not alone in having found these conversations “difficult”:061

The following post was about improvement work in the elderly on the Ayrshire Health blog. The full post and all responses to it can be read here:Flying without wings1

I submitted a reply which outlined my considerations about obtaining consent for cognitive screening. In response to my considerations, the Associate Nurse Director of Mental Health Services in NHS Ayrshire and Arran and Chair of the Mental Health Nursing Forum Scotland, appeared to remain unsure of the basis of my concerns:Flying without wings2

Professor June Andrews, Director of the Dementia Services Development Centre offered the following advice:June Andrews3

A service user shared my concerns about patient consent and raised the matter with the Ethics Committee of the Royal College of Psychiatrists:    John Sawkins

Over a decade ago, NHS Scotland published this Expert Group report:Adding life to years, 2002 aAdding life to years, 2002 cAgeism in NHS Scotlandc

This blog post asks if we care enough about consent? My view is that the principle of patient consent should be a fundamental right for all ages. It is the case that consent is a complex area but this is not a good enough reason for marginalising it. I would argue strongly that wider discussion particularly involving all of our elders is long overdue.

“Toxic certainty” – Alzheimer’s Society

In a recent post I asked ten questions of Alzheimer Scotland. I was worried that they were in a bit of a muddle. So far Alzheimer Scotland has not answered my questions. The elders of Scotland may not have such choice.

In this post I will ask questions of a sister “campaign”, that of the Alzheimer’s Society.   AS 01

The Alzheimer’s Society has huge influence and like our Prime Minister, in his “Dementia Challenge”, they adopt “fighting talk”

Fighting talk from omphalos on Vimeo.

Like Alzheimer Scotland, the Alzheimer’s Society have an  “early diagnosis campaign”

AS04

I am a specialist in dementia. The Alzheimer’s Society talk of the “right” to have “certainty” as part of their “early diagnosis campaign”.

A colleague of mine, an old age psychiatrist, has recently retired. This colleague was also Chief Executive Officer of the Mental Welfare Commission. He said, a year or two before he retired:Donny Lyons1

He continued:Donny Lyons2

This colleague called me “Bayesian Peter”. He did so as we both appreciated the science behind the parabolic pattern of cognition as we age.

AS03

This is bold talk by the Alzheimer Society. As if we have complete mastery over “certainty”

AS02

I advocate for a timely diagnosis. I am a doctor who follows evidence. I do not “deny” anybody a diagnosis but I will not pretend to have mastery over “certainty” particularly when it comes to “early diagnosis”.

Glasgow-Declaration

I have recently written to Jeremy Hughes CEO of Alzheimer’s Society as I had thought that I had personally witnessed him sign the “Glasgow Declaration” that enshrines timely diagnosis. I was there the day the declaration was signed. It is quite possible that I may be muddled about this my “memory”.

Alz-Europe-Conf-20-Oct-2014

“Toxic uncertainty”: was a phrase used recently by a leading UK academic to support “early diagnosis”.

toxic-uncertainty

I am of the view that Drs Wilson & Jungner would never have used the word “toxic”. I am also of the view that the criteria that they left behind for the world (WHO) are anything but “out of date”.

Wilson & Jungner offer a practical, ethical and scientific guide to help us through uncertainty.

A film that considers “certainty”: CARSEBRECK:

Carsebreck from omphalos on Vimeo.

Sponsored medical education: another Scottish NHS Board

Those who have followed my posts on Hole Ousia will know that I have petitioned the Scottish Parliament for a Sunshine Act. As an NHS doctor working in Scotland I was recently invited to this educational meeting. I thought it might be useful to use this as an example of the current situation for continuing medical education as I have encountered it in Scotland.

Passmore, 26-2-2015, NHS Lothian

Although this flyer does not make clear, this educational meeting is sponsored by the Pharmaceutical industry. Professor Peter Passmore has been described as a “key opinion leader” in medical education both in the UK and internationally.

This list of declarations for Professor Peter Passmore is from 2008 as given to the Journal of the Royal College of Physicians in Edinburgh.

Geriatric-Medical-Symposium2

I do my best to avoid sponsored medical education but I do try to attend meetings organised by the Royal College of Psychiatrists. For the Autumn 2011 Faculty Meeting I had suggested to the organisers that we might debate “early diagnosis of dementia” . I offered to take one side of the argument. However the organisers chose instead to invite Professor Peter Passmore.

Aware of Professor Passmore’s extensive promotion of drugs I chose not to go.Nov-2011-Forth-Valley-Educa

At this time, 2011, Scottish psychiatrists were invited to a number of educational meetings where Professor Passmore was widely promoting Memantine (EBIXA).

Just recently, the Scottish Parliament have recommended that a Register of lobbying of parliamentarians should be established. The following is an example from 2011:

push-for-the-latest-dementi

In 2013, Professor Passmore was promoting SOUVENAID, a nutritional supplement for “early Alzheimer’s disease”:

Dementia-2013

By being paid to give educational meetings for CPD approved conferences and meetings Professor Passmore is by no means departing from accepted practice.

KOLs2

Whilst I was doing my research on NHS “hospitality registers” I wrote to Professor Passmore asking where he recorded his financial interests? I got this reply from NUTRICIA:

Letter-Nutricia-june-2013

The Association of the British Pharmaceutical Industry (ABPI) are currently introducing a register of payments to individual doctors: “The central platform”. Doctors can choose to opt-out from disclosing any payments received from industry.

My interest is in transparency about such financial conflicts of interest and in particular public transparency. This is why I have petitioned the Scottish Government for a Sunshine Act:

Peter's-Sunshine-Act,-Janua

Returning to the start of this post and the invitation to attend this latest sponsored medical education, I wrote to the organisers and had this reply from the Associate Director of Medical Education:

“All of our clinical association meetings are sponsored, if they were not we simply would not be able to provide these educational meetings as we have no budget for either the catering or the travel expenses of our speakers. We have moved away from sponsorship of teaching at foundation level, but for these hospital wide meetings, at which we are keen to attract speakers from out with Lothian, this is not possible at present.”

051

Those who follow my blog posts may recall that since Alexander McCall Smith’s recommendation to me of “A Pattern Landscape” I have been exploring patterns. Here I am reminded of NHS Forth Valley who are another NHS Board in Scotland who have no money to support medical education.

I am one of many scientists who has concerns that continuing medical education in Scotland is being funded by vested interests.

 

 

 

 

Alzheimer Scotland: in a “muddle”?

My previous post was about the latest Alzheimer Scotland “campaign”: Let’s talk about dementia which was launched this month:2 Feb 2015 Alz Scot early diagnosis2

I sent my post to Alzheimer Scotland and to a number of those who signed the “Glasgow Declaration” in October 2014:Glasgow-Declaration

This is how the second Dementia Strategy (2013-16) was introduced by Alex Neil, MSP, then Cabinet Minister for Health & Wellbeing:Not-true,-but-there-you-go

You will note the Cabinet Secretary states that this first Strategy was “focused on improving care” through “more timely diagnosis”. In fact Scotland’s first dementia strategy makes no mention of timely diagnosis of dementia. Glasgow-21-Oct-2014-(18)

However, Scotland’s second Dementia Strategy was explicit:Key-outcomes-strategy-2

All of this is necessary backdrop to the “position statement” made on the 10th February 2015 by Alzheimer Scotland. I have heard several people describe this position statement as “muddled”.1

I have heard many elderly patients say, that when assessing their overall cognition, that it can feel like an “interrogation”. It is my view that we should listen to our patients. Grant King, lecturer in mental health nursing with the University of Dundee published an article about this in the Journal of Mental Health Nursing. It is worth reading. I partly consider it here.007

In their current “campaign” Alzheimer Scotland “encourage us” to have “difficult conversations” with our elders. This encouragement made me consider if it might be fair to reverse the roles and to have a “difficult conversation” with Alzheimer Scotland?

The sort of “conversations” that Alzheimer Scotland “encourage” will likely bring a cognitive examination for the person discussed. The Mini Mental State Examination now has copyright, and the Adenbrooke’s Cognitive Examination is rated out of 100. For these reasons I have chosen to structure this “difficult conversation” with Alzheimer Scotland with a template that follows the Mental State Questionnaire (MSQ). This is a shorter ten item questionnaire.Difficult conversations

The Chief Executive Officer for Alzheimer Scotland, Henry Simmons, has clarified that “the Scottish Government are not involved with it at all and we have not asked the Government to support our position or strategy around this.” Mr Simmons also stated that Alzheimer Scotland respect the concerns that I have raised. In reply to Mr Simmons, I reaffirmed:

“I also respect the good intentions of Alzheimer Scotland. For me, this is not in any doubt.”

Henry Simmons Glasgow Declaration

The following questions will be based on points made in the “position statement” by Alzheimer Scotland of the 10th February 2015.  This position statement has been described by some as “muddled”. This is the reason why I take this systematised approach:

01Alzheimer Scotland states:PS01

MSQ question for Alzheimer Scotland:
Do you think there might be a risk of giving “post-diagnostic counselling” to the 60-80% of our elders with “mild symptoms” that epidemiological studies (fully evidence-based) have found will never progress to clinical dementia?

02Alzheimer Scotland states:PS02

MSQ question for Alzheimer Scotland:
Is this a discussion only held in “medical circles”?

*my personal experience is that “patients”, family, carers, doctors, nurses, academics, ethicists, philosophers, and others, ask (in various ways) what may be a reasonable boundary to “early”? [especially when we are talking in terms of a life-changing diagnosis]

03PS03

MSQ question for Alzheimer Scotland:
So why then did Alzheimer Scotland sign the “Glasgow Declaration” that enshrines the right for a timely diagnosis? The Glasgow Declaration does not include “raising the awareness of early diagnosis”

04Alzheimer Scotland states:PS04

MSQ question for Alzheimer Scotland:
Given the established parabolic distribution of memory through the course of life, on what scientific basis does Alzheimer Scotland “emphasise the importance” of “memory problems” in isolation from ageing, functional impairments, and crucially (in terms of Internationally accepted clinical criteria for dementia) other forms of cognitive impairment?

05Alzheimer Scotland states:PS05

MSQ question for Alzheimer Scotland:
Does this not seem to be an inconsistent, confusing and potentially harmful approach for Alzheimer Scotland to take?

06Alzheimer Scotland states:PS06

MSQ question for Alzheimer Scotland:
Have you consulted and gathered the wider views of Scotland’s “elderly” [those aged 65 or over] as a whole?

07Alzheimer Scotland states:PS07

MSQ question for Alzheimer Scotland:
Regardless of the term we may use [“screening”, “case-finding”, “detection”, “early diagnosis”, “timely diagnosis”] should we not – when it comes to matters of public health – seek to follow the ten criteria set by the World Health Organisation (Wilson & Jungner)?

Established global research finds that “early recognition” can provide false-negative and false-positive diagnoses. In more basic terms: it can be harmful. Drs Wilson & Jungner provided criteria to help us. Dr Wilson was an Edinburgh doctor, largely forgotten but NOT to those interested in public health.

08Alzheimer Scotland states:PS08

MSQ question for Alzheimer Scotland:
Are you sure these statistics are fully valid and that they support your conclusion?

[it is noted that this statement is linked to a Scottish Government target.]

09PS09

MSQ question for Alzheimer Scotland:
Your position statement makes valid points here. However ALCOVE recommends (strapline):ALCOVE

So the question is: why has Alzheimer Scotland departed from ALCOVE?

10Alzheimer Scotland states:PS10

MSQ question for Alzheimer Scotland:
This is the only part of Alzheimer Scotland’s position statement which in any way recognises the complexity of cognitive changes over the course of life. Does Alzheimer Scotland think that this campaign takes account of the scientific questions that remain unanswered and which include an appreciation of the influence of culture, society and ageing itself?

SUMMARY:
I do hope that Alzheimer Scotland will continue to engage with me in this conversation. I fully accept that it is a difficult conversation. I also understand that not all questions may be easily answered.

Alzheimer Scotland is a charity that I support – and for whom I was (for a brief time) a medical representative on their policy committee

I do hope that Alzheimer Scotland will appreciate that my questions are well intentioned, just as I appreciate that good intention is the basis of the “Let’s talk about dementia” campaign

When forgetfulness becomes pathological

A few years back I was a member of the Policy Group for Alzheimer Scotland. I resigned as I was concerned about some of the approaches being taken at a national level including significant concerns about the target set for the early diagnosis of dementia.

This week a promotional e-mail arrived from Alzheimer Scotland:2 Feb 2015 Alz Scot early diagnosis2  The “Let’s talk about Dementia” campaign was introduced as:

“we want to open up the discussion on dementia and raise the awareness of the importance of early diagnosis”

The guidance given is comprehensive and explicit. An Alzheimer Scotland helpline is available 24 hours:How-you-can-help

The good intentions are clear. Yet I have significant concerns with this approach.

I have previously covered my concerns about early diagnosis here.

I have also considered the wider scientific evidence on memory loss as we age. This post on the parabolic pattern offers a summary.

The risk of the approach taken by Alzheimer Scotland in this current campaign is that all forgetfulness is “understood” as pathological. As disease. As “early dementia”. As “Alzheimers” (as dementia may synonymously be misunderstood). This would be a false “understanding” for a significant number of our respected elders in Scotland. Such misunderstanding risks undermining their “rights, dignity and autonomy”.

In October 2014 I attended the Conference below. Here is a summary of this conference by Henry Simmons, Chief Executive of Alzheimer Scotland:HSimmons

I welcomed “The Glasgow Declaration” endorsing as it  does a timely approach to the diagnosis of dementia:

Signing-the-declarationI was delighted to see this agreement signed as I have been tireless supporter for timely diagnosis.

Glasgow-Declaration

The Glasgow Declaration follows the guidance of the UK National Screening Committee and for Europe, ALCOVE, Timely Diagnosis of Dementia.

The Glasgow Declaration from omphalos on Vimeo.

So, with this recent history in mind, here is my [fictional] letter to the letters page of any newspaper published in Scotland. Here, I am following the advice of this latest Alzheimer Scotland Campaign:

5th February 2015

"Dear Editor,
I am writing as I am concerned about the short term memories 
of a few professional colleagues. 

This is a "difficult conversation" for me to have. 

I have followed advice and will not mention any names 
but can give designations. One is the recent Cabinet Minister 
for Health, another is his Senior Government Advisor 
and the last is the Chief Executive of Alzheimer Scotland.

It seems that all three have forgotten that they signed, 
in October 2013, the Glasgow Declaration based on 
the timely diagnosis of dementia.

I must admit feeling a bit confused myself as to why we have 
such forgetfulness. I do hope that it is not pathological.

Yours sincerely
Dr Peter J Gordon

British Medical Journal, 24 January 2015

This week’s BMJ provides a useful overview of the thorny issue of seeking an earlier diagnosis in dementia. I have always argued that a push for “early” diagnosis, using what are in effect screening tools for cognitive impairment, carries with it risks of mis-diagnosis and over-diagnosis. I have found it very difficult to make my voice heard in raising these concerns about potential harm to patients. Several years down the line, following significant personal consequences of persistently arguing this point, I find that the UK National Screening Committee has come to exactly the same conclusion:

Evidence-for-screening-for-

In the section highlighted above the Committee identifies twice as many false-positive as genuine diagnoses of dementia using current tests.

Industry's-interest-in-deme

Dr McCartney raises one possible explanation of why the UK National Screening Committee’s advice regarding dementia, which is no different from its advice of 2010, was effectively ignored by governments, charities and healthcare professionals. My concerns about conflicts of interest influencing policy developments led me to petition the Scottish Government for a Sunshine Act.

Undiagnosing-dementia,-BMJ,

I have a continuing concern that the figures quoted by the UK National Screening Committee refer to people aged 65 years and over. A considerable proportion of the people that I see are over 80 years. Given the parabolic distribution of cognition with age it is possible that the rates of false-positive diagnosis could be higher in this age group.

Evidence to back dementia screening is still lacking, committee says

This report has just been published in the BMJ:Evidence lacks, dementia screening Jan 2015

It has attracted this response from a “free spirit” and “old man”:J K Anand 17 Jan 2015

The article begins:

“GPs have again raised the question of why NHS England persists in promoting dementia ‘case finding’ after the UK advisory body on screening reiterated its view that the current test for dementia was not accurate enough to recommend it for routine use.”

My view, having studied the subject of “case-finding” is that it is one-and-the-same as screening:

One and the same from omphalos on Vimeo.

Dr Martin Brunet stated in this BMJ article: “Unfortunately, despite the fact that there has never been a recommendation to screen for dementia, NHS England policy has been to introduce screening programmes in primary and secondary care by using the term ‘case finding,’ to circumvent [National Screening Committee] guidance.”

The article continues: “After reviewing the evidence on screening people aged over 65 for dementia, the UK National Screening Committee concluded that none of the tests currently used in practice distinguished well enough between people with dementia and those without.”

I have just had the following submission accepted for publication by the BMJ:ethics not just for xmas

Dr Margaret McCartney stated in this BMJ article: “I hope that the architects of screening for dementia in the UK take heed of this reiteration that screening for dementia is ineffective and harmful. Who will be held to account for the harm that the dementia screening policy has done?”

Scotland’s approach to dementia diagnosis can be read here.

This film covers the evidence that Scotland gave to the All party Parliamentary Group in Westminster. The meeting was entitled “How to improve dementia diagnosis rates in the UK”

How to improve dementia diagnosis rates in the UK from omphalos on Vimeo.

The article confirms the potentially high rate of false-positives: “The committee said that current tests showed that between seven and 17 in every 100 people over the age of 65 had mild cognitive impairment but that each year only about 5-10% of these would develop dementia. With use of current tests, 18 in 100 people would test positive for dementia, the committee said, but only six would actually have dementia, leaving 12 receiving a positive result when they didn’t have dementia, while one other person who did have dementia would be missed and be falsely reassured.”

I have long argued these concerns:

The diseased Other from omphalos on Vimeo.

The parabolic pattern can be read here.

Primum non forgetful from omphalos on Vimeo.