Back in the driving seat: Industry

Hole Ousia

Historical backdrop (the last decade):

UK Key Opinion Leaders argued robustly and consistently for an early approach to the diagnosis of dementia without articulating uncertainties, risks and necessary ethical aspects of person-centred approaches to diagnosis.

When first published in the BMJ the authors gave no competing declarations of interest despite evidence (in the public domain) that this was incorrect. The BMJ and GMC took no action.

The history behind the following volte-face statement of the UK experts in dementia is recorded in the BMJ. The following statement was published on the 21st March 2013:

“The issue of the terminology of early or timely diagnosis of dementia is important. Most people ‎now agree that “timely” is a better way of describing what is trying to be achieved – it suggests a ‎person centred approach, does not tie the diagnosis to any particular disease stage . . . “

The ‘Dementia Tsar’, Professor Alistair Burns, made it clear

“by putting…

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OBE

Mental Health Cop

I wrote this post in June 2016 and simply forgot to publish it. Having had a bit of a BLOG clear-out over Christmas where I’ve binned about thirty part-written blogs where I found myself just banging on again and again about the same old thing.  However there were a couple I decided to keep and this is one of them, just for personal reasons.


I was thrilled to receive a letter in May, indicating that the Prime Minister wished to put forward my name to Her Majesty the Queen, recommending that I be appointed an Officer of the Order of the British Empire (OBE) for services to policing and mental health. Since the announcement, I have been smiling broadly and have laughed out loud a few times, overwhelmed by messages of support from frontline police officers as well as mental health professionals and members of the public. I was delighted…

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When the dead speak

Race Reflections

When my eldest son was about 6; he wrote a poem at school he entitled sadness; which eventually got published. I am reproducing it here, with his permission.

Sadness

It feels like pain
And it sounds like rain
And it reminds me of my mum’s dad who died
It smells like blood
And it tastes like blood
The colour is red

When he returned home on the day he wrote Sadness; elated and proud it had been selected for publication; I had to contain tears and shock. I instantly felt something significant was making itself manifest. I was not sure how to formulate. I can’t remember wether I cried or not in front of him but I know I cried, away from him.

My son was happy. Pretty much had always been. The sadness was not his. The connection between the imagery of violence, my father and loss clearly evaded…

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The Edinburgh Consensus: a useful opportunity for self-reflection

Shibley's blog

The “Edinburgh Consensus” published today makes some important points of considerable importance to the identity of the dementia within services and research. I’m left wondering what further has been achieved since the Scottish Declaration of 2014, when I attended the International conference hosted by Alzheimer’s Europe.

But in the words of the current Prime Minister of the United Kingdom, nothing has actually changed. The string of failures in finding reliable biomarkers continues to get longer, and even the Alzheimer’s Association this year had immense difficulty in promoting the latest phase III success story – because there wasn’t one. It was left up to the Lancet Commission on dementia to demonstrate that progress was being made.

Nonetheless, the paper, although it could have been written without much difference a few years ago, I thought, raised some questions which are as important now as they ever have been.

In my personal life, much…

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Winter Waders

Isle of May National Nature Reserve

Purple Sandpiper Purple Sandpipers wintering on the island

Oyster 1 Oystercatcher

Turnstone Turnstone at high tide

Monday 18th December comments: We all know that the Isle of May NNR is an important reserve for its nesting seabirds and breeding Grey Seals but its also important for other wildlife, even in the depths of winter.

During the winter months the island is uninhabited and therefore undisturbed which is ideal for a number of wading birds which utilise the island during this period. Breeding birds from the high arctic such as Turnstone and Purple Sandpiper winter in small numbers, feeding along the rocky shorelines and roosting at high tide in the relative safety of the island.

These small wading birds will eventually head back north in the spring but until then will take full advantage of the Isle of May. Other birds such as Oystercatchers and Curlew are also present during the winter, showing you just how the island is used by wildlife…

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I was born in Edinburgh

Hole Ousia

I was born in Edinburgh:

However I wish to have no part with this “consensus”:

This  small group consensus needs to explain how Alzheimer’s disease can accurately be distinguished from clinical dementia otherwise great harm could result.

I was made aware of this “consensus” only this week following request from Professor Craig Ritchie to identify patients from our clinics to be involved in research. I am afraid that I found the request somewhat confusing. It began:

“We have a broad programme of research in European Prevention of Alzheimer’s Dementia (EPAD) to look at the impact of disclosure of risk status in people with preclinical or prodromal dementia (previously referred to as MCI).”

Yet continued:

“We know that the evidence base to be able to accurately predict risk needs some growing and that is the main purpose of the EPAD Cohort and PREVENT Dementia Cohort”

and confirmed:

“In a vast programme of…

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The ‘Edinburgh consensus’

The ‘Edinburgh Consensus’

I was born in Edinburgh:

 

It was by accident that I learned that this “consensus” has been “operationalised” across the NHS.

 

This  small group consensus needs to explain how Alzheimer’s disease can accurately be distinguished from clinical dementia otherwise great harm could result.

I was made aware of this “consensus” only this week following request from Professor Craig Ritchie to identify patients from our clinics to be involved in research. I am afraid that I found the request somewhat confusing. It began:

“We have a broad programme of research in European Prevention of Alzheimer’s Dementia (EPAD) to look at the impact of disclosure of risk status in people with preclinical or prodromal dementia (previously referred to as MCI).”

Yet continued:

“We know that the evidence base to be able to accurately predict risk needs some growing and that is the main purpose of the EPAD Cohort and PREVENT Dementia Cohort”

and confirmed:

“In a vast programme of research we are lucky enough to be leading from Edinburgh.”


This post – the Parabolic Pattern – is based on established epidemiology and hopefully explains why I have significant reservations about the current scientific understanding that shapes the “Edinburgh consensus”.

My concern is that early diagnosis has been conflated with prevention.

I fully support EPAD but I am concerned that the opening statement of the Edinburgh Consensus may indicate that one of the significant driving forces in reclassifying mild cognitive impairment (MCI) is the pharmaceutical industry. The Edinburgh Consensus begins “This commentary discusses the disease-modifying treatments for Azheimer’s disease which seem likely to appear in the next few years.”

Scottish Development International provides the backdrop:


The same day that I learned about the Edinburgh Consensus, this letter by Dr Mike Devine was published in the BMJ:

The following is a response that I have submitted to the BMJ:

I share Dr Devine’s professional approach to patient-centred diagnosis of dementia (1)

This approach was enshrined by the Glasgow Declaration of 2014, which has been signed by 153 policy makers (including 84 MEPs) from 25 European countries along with 205 separate organisations (2)

The same day that I was reading Dr Devine’s letter I was sent a communication about the “Edinburgh Consensus” (3). I was not aware of the Edinburgh Consensus until I received this communication which confirmed “the operationalisation of the Edinburgh Consensus which is on-going with NHS England and NHS Scotland.” I have practised in NHS Scotland for 25 years, I am a specialist in dementia, and I was born In Edinburgh.

The “Edinburgh Consensus” provides this context: “This commentary discusses the implications of disease-modifying treatments for Alzheimer’s disease which seem likely to appear in the next few years and results from a meeting of British experts in neurodegenerative diseases in Edinburgh. The availability of such treatments would help change public and professional attitudes and accelerate engagement with the prodromal and preclinical populations who might benefit from them. However, this would require an updated understanding of Alzheimer’s disease, namely the important distinction between Alzheimer’s disease and Alzheimer’s dementia”.

I worry about the potential for harm in conflating risk with disease, especially when understandings are still very much in development (4) The potential for over-medicalization and inverse care cannot be ignored.

Have we here further examples of divides? Between Glasgow, and its Declaration, and Edinburgh and its Consensus?

I fully support research into at-risk states for dementia. However I am concerned that this “consensus”, which has been approved by the Faculty of Old Age Psychiatry of the Royal College of Psychiatrists and the Association of British Neurologists, may not have sought to listen to any other voices than their own.

[this rapid-response is written in a personal capacity only]

References:
(1) Devine, M. Patient centred diagnosis of dementia: we must listen to patients’ wishes. Published7 December 2017. BMJ, 2017;359;j5524
(2) Glasgow Declaration, 2014 – http://www.alzheimer-europe.org/Policy-in-Practice2/Glasgow-Declaration-…
(3) The Edinburgh Consensus
(4) Wilson and Jungner, World Health organisation, 1968

 


Dr Shibley Rahman has given his perspective on the Edinburgh Consensus: Edinburgh Consensus: a useful opportunity for self-reflection and  I have offered this response where I express my concerns as an NHS doctor of 25 years:

Dear Shibley,
I support research into at-risk states of dementia and am fully, totally, and completely behind prevention.

My understanding is that the “Edinburgh Consensus” is now being “operationalised” in NHS England and NHS Scotland. This worries me as the Edinburgh Consensus has determined that mild cognitive impairment should now be classified as “preclinical dementia” or “prodromal dementia”. Thus determining, over and above any individual consultation, that all cognitive impairment progresses to dementia. This does not match real world epidemiology.

Prof Clive Ballard stated in the Lancet “the paradigmatic brain pathology of Alzheimer’s disease – plaques and tangles – is only a post-mortem finding of limited explanatory value in the expression of dementia in the population.”

Yet the Edinburgh Consensus has determined that the NHS is now to diagnose Alzheimer’s disease. The Consensus does not explain how this can be done accurately in the clinical setting.

In Scotland we already have inverse care as a result of the incentivised target for the early diagnosis of dementia. Somewhere in the region of 50% of those diagnosed for dementia are on waiting lists for post-diagnostic support.

I fully support research into prevention but in my opinion, with current state of knowledge, it could be most harmful to introduce research criteria into the clinical setting.

The knowledge of pathology is developing thanks to good folk like Prof Ritchie and this is revealing the most complex interaction between the person, our organic brain, and living through time. The pathologies remain poorly understood and seem to be far more complex than the 1907 starting point.

I really do not think that this “Alzheimerisation” is helping us live well. It is not realistic medicine. It simplifies, generates great fear, and marginalises what we have learned about the normal ageing brain. Most of the patients I see are in their 80s and have complexities of all sorts that would seem to indicate that neurodegeneration (as understood today) is not the whole story.

I realise that this comment will probably not go down well but I do worry about the influence of the pharmaceutical industry and allied commercial enterprises for imaging and neuropsychology. I am fully aware that there was no financial sponsorship of the “Edinburgh Consensus”. However it is the case that a significant number of the authors have financial relationships with commercial enterprises who have an interest in this area.

kindest wishes Peter


Friday 15th December 2017.
I have sent this communication to my NHS colleagues:

“I may have to leave medicine if the Edinburgh ‘Consensus’ becomes the approach to diagnosis that the NHS is required to take.”