The Scottish Public Want Sunshine

There is a long standing joke about the lack of sunshine in Scotland.

Three years ago I began the process of raising a petition with the Scottish Parliament to urge the Scottish Government to introduce a Sunshine Act.

A Sunshine Act makes it a statutory requirement for all payments from commercial interests made to healthcare workers and academics to be declared publically. The metaphor is that sunshine brings full light. Both the United States of America and France have introduced a sunshine act.

The doctor in Gabriel García Marquez’   ‘Living to tell the tale’ says “Here I am not knowing how many of my patients have died by the Will of God and how many because of my medications”. Márquez often returns to the theme of medical ethics in his writings and reminds us that all interventions have the potential for benefit and harm.  In ‘No one writes to the Colonel’, “a man [who] came to town selling medicines with a snake around his neck”. Here Márquez is reminding us of the long history of the financial opportunities open to healthcare professionals.

As a junior doctor in around 2000, I was handed by a Consultant a several hundred page document entitled “Behavioural and Psychological Symptoms of dementia”. The Consultant told me “this is the way forward!” Some years on I came to realise that this document had been developed, funded and disseminated by the Pharmaceutical Industry whose first loyalty, as a business, is to its share-holders.

In the wake of the dissemination of this document, prescribing of antipsychotics, sedatives and antidepressants in Scotland has been rising year on year. This has been described as mass prescribing, and is often long-term. Yet the evidence to support such prescribing is poor.

There is much promotion of “partnership working” between industry and healthcare. Yet we must remember that these two partners have different aims, and it is the responsibility of healthcare workers to follow the ethical approaches central to their professions. For example, the General Medical Council is clear about what is expected of doctors in their code “Good Medical Practice”. The potential for conflicts of interest is recognised and doctors are advised “you must be open about the conflict, declaring your interest formally”.

Since 2003, Scottish Government guidance has been in place to allow the declaration of financial interests of NHS staff, to their employing health boards. As a result of my petition, the Scottish Government has confirmed that this guidance is not being followed.

One key area of concern is the continuing professional education of healthcare professionals, another requirement of professional bodies. In at least two Boards in NHS Scotland, continuing medical education relies entirely on the financial support of commercial interests.

National and international conferences may also form part of continuing professional education. Because of the Sunshine Act in the USA, we know that a key-note speaker at a recent UK conference has been paid more than £3 million dollars by the pharmaceutical industry since the Sunshine Act was introduced. There is currently no way of knowing the scale of any payment made to a UK speaker sharing the same platform.

My experience of trying to clarify if there is transparency about financial payments in Scotland has been revealing. I have encountered significant defensive reactions from individuals and organisations. There has long been a body of evidence that, for example, prescribing behaviour is influenced by commercial interests, yet doctors find it hard to accept this. This collective denial would suggest that the forthcoming (voluntary) ABPI Register is unlikely to work as many will regard it as not applying to them and will therefore opt out.

As part of their consideration of my petition, the Scottish Government commissioned a public consultation exercise on a need or not for a Sunshine Act. The majority of participants expressed their view that all financial payments should be declared on a single, central, searchable register and that this should be a mandatory requirement.

The forecast for Scotland looks good: sunshine.

 

Dr Quackleben

Dr Quintin Quackleben was the doctor portrayed by Water Scott in ‘St Ronan’s Well’

Dr Quackleben must be very old now!

Yet, I do believe he is alive and well.

I once carved into one of our garden trees: “Nullius in verba” or “take nobody’s word for it”. There is guid reason why this was chosen as the motto of the Royal Society.

Peter is passionate about science. But science needs to be dispassionate: science is based upon a determination to be as “objective” as possible.

My worry is that Dr Quackleben, that sleekit, Leyden adorned physician, creeps into the life of us all.

My view is that it is vital that science, of any time or age, feels able to ask questions of Dr Quintin Quackleben.

Dr Quackleben from omphalos on Vimeo.

NHS Forth Valley – unable to offer reassurance

There were a number of reasons why I left NHS Forth Valley. One of those reasons was a concern that patients, often elderly, were being harmed through the misdiagnosis of dementia.

Shortly after I left I wrote to senior management seeking the following reassurance:

  • that any patients that have been harmed are acknowledged and where appropriate supported in coming to terms with their mis-diagnosis,
  • that practice in NHS Forth Valley now follows Scottish, UK and International guidelines on Dementia.
  • that NHS Forth Valley has, as an organisation, reflected on this matter

Following a reminder I received a reply suggesting that examining comparative data would be helpful but would take some time:

Tracey Gillies 23-Feb-2015

Following another reminder I have now received what I take to be the final position of NHS Forth Valley on the matter. My understanding of this is that NHS Forth Valley cannot provide the reassurance that I was seeking:

Tracey Gillies 16-Mar-2016

Tracey Gillies 16-Mar-2016 Glasgow Declaration

I have sent the following letter to NHS Forth Valley which reiterates my ongoing concerns:

"I remain concerned about the potential for harm relating to the 
over-diagnosis of dementia. I understand that you are not in a 
position to reassure me on this in terms of patients referred to 
NHS Forth Valley. I would welcome it if this “could potentially be 
explored in the future.” 

I note and understand your general comments about reflection. 
The book “Intelligent Kindness”  considers the importance of reflection 
not just at an individual level but also at an organisational one.

I feel that it is now time to conclude our correspondence on this 
matter."

If anybody would wish to see the full context of the letters please contact me.

 

 

 

“It deprives you of your identity, and supplies another, simpler one”

Submitted as a rapid-response to the BMJ, 6 March 2013: http://www.bmj.com/content/341/bmj.c4670/rr/634772

As a psychiatrist for older adults I have noticed not just a scientific but also a cultural change in our appreciation of memory function as we age. Ten years ago those waiting for my clinic had a range of reasons for presenting but today one predominates: concern about memory loss.

It is not uncommon to hear that whilst in the waiting room our elders are anxiously practising with their family: who is the Prime Minister and how to spell WORLD backwards.[1]

My concern is that a reductionist approach to memory loss in our elderly is now prevailing and that it is not based upon available evidence. The timely diagnosis of dementia is important but we must remember what the evidence tells us: that there are a range of reasons for mild memory loss. It is important that we do not ourselves forget that early amnesia may be age-related and non-progressive for a significant majority of our elderly.

Everywhere I now look, whether it is in the BMJ, the latest promoted symposium or in the general media, ‘Dementia of an Alzheimer’s type’ is referred to as ‘Alzheimer’s disease’. With current imperatives for early diagnosis (and increasingly cognitive screening) any early amnesic memory loss is most likely to be labelled as ‘early Alzheimer’s disease.’ It seems that for our elderly the disease model has displaced the clinical classification as set out in ICD10 and DSM-V.

Does this matter? We hear about ‘Alzheimer’s’ (as it is generally now shortened) every day. The definition we assume can only be robust as huge amounts have been spent on research. The director of research at the Alzheimer’s Society recently concluded that “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.”[2] It is also quite clear that the pharmaceutical industry, after 40 years of extensive research have concluded that neural plaques have a complicated and far from specific relationship with ‘Alzheimer’s disease’[3]

Currently being promoted are products specifically marketed for ‘early Alzheimer’s disease’ both as tests to assist ‘early diagnosis’ and dietary or vitamin symptomatic treatments. The market is considerable and will no doubt tap into a culture of fear that has been heightening for several decades.[4]

The risk is that far too many of our elderly will be wrongly labelled as diseased: that would indeed be a world spelt backwards.

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This is a copy of a Rapid-response post to the BMJ

Dr Hannah Zeilig gives a fascinating talk in this area: “What do we mean when we talk about dementia?” It starts about 16 minutes in:


[1] Manthrope, J et al From forgetfulness to dementia, Br J Gen Pract 2013; 63: 30–31

[2] Ballard, C et al Alzheimer’s disease, Lancet 2011 Mar 19;377(9770):1019-31

[3] George, D et al Through the amyloid gateway, Lancet Vol 380 December 8, 2012

[4] Zeilig, H. Dementia as a cultural metaphor, The Gerontologist. Feb 2013 doi:10.1093/geront/gns203

Confusion

This was published as a BMJ letter: Re: proposed dementia screening: http://www.bmj.com/content/346/bmj.f511

It seems that there is an awful lot of confusion about. It also seems to be the prevailing impression that it is our elderly who are most prone to confusion. The recent BMJ discussion about the screening for dementia has highlighted that it is both incorrect and potentially stigmatising to consider such confusion as the preserve of our older generation. (1)

At least six areas of confusion do seem prevalent when it comes to our understanding and collective approach to memory loss in old age:

1. General confusion: The general population is increasingly using the word “Alzheimer’s” instead of “dementia.” This is hardly surprising when you consider:

2. Professional confusion: NICE and SIGN Guidelines for Dementia both contain definitions of dementia and of Alzheimer’s disease, yet in the body of the guidelines, the terms are frequently used interchangeably. (2)

3. Confused ‘education’: Much post-graduate medical “education” is sponsored by the Pharmaceutical Industry. Much awareness raising by charities is also backed by the Pharmaceutical Industry. Many political imperatives are influenced by lobbyists for the Pharmaceutical Industry. We are certainly confused about where the line lies between these activities and “marketing”? (3)

4. Confusion between research and clinical agendas: Advances in research are too often extrapolated prematurely into a general clinical setting by well intentioned clinicians who may also be responding to the clamour of the latest press-release. (4)

5. Confused about risk: The communication of risk is fundamental to medical practice but is undoubtedly difficult. Every intervention has the potential for benefit and for harm. We are so keen to see the former that we sometimes forget to look for the latter. (5)

6. Confusion about science: Scientific evidence must be taken in context. Many universities are responding to this by making the Medical Humanities an integral part of their under-graduate medical curriculum.

The dictionary definition of confusion is: “a feeling that you do not understand something or cannot decide what to do.” We must resist the temptation to respond to confusion with over-simplification and instead find a way to acknowledge complexity.

CropperCapture[1]

(1) Observations: There is no evidence base for proposed dementia screening. Martin D Brunet, Margaret McCartney, Iona Heath, Jonathan Tomlinson, Peter Gordon, et al. 345:doi:10.1136/bmj.e8588 (Published 27 December 2012)

(2) NICE Guideline on Dementia. CG42. First published Nov 2006 and SIGN Guideline 86: Management of patients with dementia. 2006

(3) Margaret McCartney. The Patient Paradox. Pinter & Martin Ltd. 2012

(4) George, D.R; Qualls, S.H.; Camp, C.J. and Whitehouse, P.J. Renovating Alzheimer’s: “Constructive” Reflections on the New Clinical and Research Diagnostic Guidelines. The Gerontologist; doi:10.1093/geront/gns096

(5) Gigerenzer, G. Reckoning with risk: Learning to live with uncertainty. 2002. Penguin books.

Prescribed Disengagement

A friend of mine (a colleague) recently asked me to “explain” disempowerment.

Another dear friend of mine (diagnosed with dementia) has written about: “Prescribed Disengagement”.

It has struck me that: a very fine colleague, and a very fine friend, represent today a wide spectrum of understanding.

Kate's-poetry

My view is that few have written better about this matter than Kate Swaffer. Along with Richard Taylor, Kate has been a pioneering and brave voice amidst a prevailing world of “understanding”.

Kate Swaffer visited Scotland this summer and kindly took great trouble (Kate and her husband Peter had to rearrange their travel plans) to meet with me in Bridge of Allan.

I am not one for accolades, triumphalism, or plinths, but for me Kate deserves all.

Kate is a pioneer of sense. In a world where we constantly hear a load of nonsense about dementia.Kate Swaffer visits Mossgrove 30 June 2015

What you need to know

1 in 7 Scots are on an antidepressant. Some Scottish academics have argued that this is “appropriate prescribing” for “recurrent” and “chronic” conditions.

Antipsychotic prescribing, in all age-groups, has risen year-on-year since the Scottish Government started measuring such prescribing. Last week NHS Scotland was struggling to source one such antipsychotic, namely haloperidol. Intramuscular haloperidol may not be available for 14 months. I do not know if this is a supply or demand issue, however this medication is being most extensively used in NHS hospitals in Scotland despite generally being prescribed “off-label”.

With this in mind I present a pattern that emerged from reading the current British Medical Journal alongside my weekend newspapers.  Here is what they both suggested that “you need to know”:

All the other children are on it, 21 Nov 2015, Guardian Andrew Lansley, Roche 20 Nov 2013 Disney and McDonald's staple, 21 Nov 2015, Guardian Generation meds, 21 Nov 2015, Guardian Long term effects on oor children, Guardian, 21 Nov 2015 Now you are my friend, Nov 21, 2015, Guardian Pharmacological mission creep, BMJ, 20 Nov 2015 What you need to know, Bmj, 21 Nov 2015

 

 

“Truly be all you can, and not what the ‘experts’ tell you to be”

This post is for Richard Taylor who died on the 25th July 2015.

I am not aware of any other who has done more to challenge the mythologies and stigmas of “Alzheimers” than Richard Taylor.

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I dedicate my film Primum Non Forgetful to Richard.

Primum non forgetful from omphalos on Vimeo.

Richard’s last line: “Truly be all you can, and not what the ‘experts’ tell you to be.”

001Richard Taylor

002Richard Taylor

003Richard Taylor

004Richard Taylor

005Richard Taylor

006Richard Taylor

 

 

“In a world that has lost its signposts”

The following screenshots come from my Sunday paper. The article was published in the Observer on the 19th August 2015.

I have written before on Hole Ousia about how we use language. Whether we are scientists or artists, or indeed both, we should consider carefully how we use language.

Metaphors of loss abound in this particularly distressing newspaper article. I am referring to judgmental language that we can all too easily use to describe the lives and experiences of others.

There is no sense in this article that one can live well with dementia or that agency and humanity are most often retained even in severe dementia.

The title of the blog-post comes from the newspaper article. Like metaphors of loss, I am also not fond of the much-used “signpost” metaphor. But perhaps this “signpost” is correct: maybe it is the world, and not the individual with dementia, that has lost its way.

In a world that has lost its signposts

The art of losing our minds (Observer July 2015) (1)

The art of losing our minds (Observer July 2015) (9)

The art of losing our minds (Observer July 2015) (3)

The art of losing our minds (Observer July 2015) (8)

The art of losing our minds (Observer July 2015) (5)

The art of losing our minds (Observer July 2015) (4)

The art of losing our minds (Observer July 2015) (10)b

The art of losing our minds (Observer July 2015) (11)

The art of losing our minds (Observer July 2015) (6)