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.

 

 

 

Reply from Scottish Government

Geoff Huggins,
Head of Mental Health at The Scottish Government,
Directorate for Health and Social Care Integration Mental Health and Protection of Rights Division

T: 0131-244 3749
geoff.huggins@scotland.gsi.gov.uk

26 September 2013

Dear Peter
I said I would write to you with a summary of our meeting on 19 September.

This was a wide-ranging meeting although the initial focus of your engagement over recent months has been on dementia.

We covered your concerns on what you see as the risks around over-diagnosis of dementia and the over-medicalization of memory loss in old age. As discussed the Scottish Government’s shift of emphasis from early to timely diagnosis is quite a subtle and nuanced one reflecting the balance of clinical and other opinion in favour of the latter. The essential principles – reflected in our strategic focus on post-diagnostic support embodied in the HEAT target – are that, as you know, people benefit from an accurate and timely diagnosis and there can be significant advantages in getting the diagnosis at the stage of the illness (early on) when they can get optimum benefit from post-diagnostic support to adjust to the diagnosis (both psychologically and practically), connect better and navigate through services and plan for and make active and informed decisions on future care.  We recognise that there are some challenges around early diagnosis in that diagnosing some dementias are difficult in the early stages.

You also shared some concerns you have about the potential ethical issues around diagnosis and the roll-out of post-diagnostic support in areas such as consent and confidentiality. More broadly you are strongly of the view, as we are, that responding to memory loss and dementia should be informed by a holistic, person-centred and human rights-based approach. This is exactly the approach taken in developing and implementing not only the post-diagnostic HEAT target – which adopts a comprehensive, person-centred model, supported by the roll-out of national training and awareness not only to front-line staff but also to operational and strategic managers – but also the dementia standards and the Promoting Excellence framework.

In dementia and other areas you expressed your on-going concerns about the risk, as you see it, of disproportionate influence of pharmaceutical companies in inculcating and sustaining a clinical culture where there are risks of over-diagnosis and where drug treatments are over-prescribed. You argue that greater transparency is needed regarding the relationships between such companies and individual clinicians and practices.

We had some discussion on the prescribing of anti-depressants. I explained that although our national target on reducing anti-depressant prescribing had been superseded on our target on increasing access to psychological therapies as a main lever for change and improvement, implementing the anti-depressant target in Scotland had been an immensely valuable process and helped us learn more about the issues involved than many other parts of the world.

We have good evidence of the appropriateness of clinical practice in this area. The study “ Newly initiated anti-depressant treatment in Scotland: a database study” (Christopher Burton & Colin Simpson, Centre for Population Health Sciences, University of Edinburgh) found that their “data suggest better adherence to treatment [in Scotland] than in three recent reports using comparable routine care data from England, Spain and the USA” . In addition, John Gillies, the Royal College of General Practitioners Chair has said:  “As the stigma attached to mental health has declined, more patients raise problems such as depression with their GPs. There is good evidence that GPs assess and treat depression appropriately. Good prescribing practice often means treating patients at a therapeutic dose for longer to avoid a recurrence. This explains much of the rise in prescribing”.

Our over-riding principles are that people with mental illness should expect the same standard of care as people with physical illness and should receive medication if they need it. While we ensure those who need medication continue to receive it, we are also committed to improving access to alternatives, such as psychological therapies, that increase choice and best accommodate patient preference.

Thank you for taking the time to meet with me.  Please let me know if at any time you wish to or have the time to get involved in or contribute to dementia work streams being taken forward as part of implementing the 2013-16  strategy. I know you have already contributed your views on our work with stakeholders to develop a national commitment to reduce the prescribing of inappropriate psychoactive medications in the treatment of dementia.

Yours sincerely

Geoff Huggins sig

GEOFF HUGGINS

How we risk getting it wrong in cognitive screening too

Reply to: How we got it wrong with breast screening: http://www.bmj.com/content/344/bmj.e3450

Dr Peter J Gordon’s reply was published in the BMJ as a letter; Published 12 June 2012 as:BMJ2012;344:e4043: http://www.bmj.com/content/344/bmj.e4043

How we risk getting it wrong in cognitive screening too
This is an interesting review by Professor Klim McPherson[1] and it has left me wondering that if in ten years time we may be asking a similar question of cognitive screening?

Klim McPherson is a professor in public health epidemiology and I would suggest that we give this discipline due weight in the consideration of cognitive screening in our elderly. Robust, repeated world wide epidemiological findings show that more than half of our elderly with mild early memory loss do not progress to clinical dementia[2]. This group needs consideration as well as the group who actually go on to develop dementia. A diagnosis of dementia is a life-changing event: we cannot simply ignore the potential for false-positive diagnoses. This is perhaps especially true for a vulnerable group like this whose voice has not been sought.

Fears have been expressed that screening based on the proposed DSM-V category of ‘minor neurocognitive disorder’ may potentially have this group classified as suffering from early dementia[3]. Yet, seen from a clinical and epidemiological perspective this group actually do not have dementia: they have mild memory loss that is static (occasionally reversible) with no significant functional loss.

I support my professional colleagues in seeking a timely diagnosis of dementia and agree that this is a challenge that deserves serious thinking. But specialties such as mine must not ignore the wider, real-world sociology of ageing alongside robust epidemiological evidence. Furthermore perhaps we need to consider lessons learnt through other early screening programmes such as this[4]. Otherwise in ten years time we might be asking: How we got it wrong with cognitive screening?

This letter was published last summer in the BMJ. Since that time the Grassroots GP have been carefully considering cognitive screening as proposed by the Department of Health. The narrative of this is beautifully summarised here:
http://grassrootsgp.org/dementia-screening/

CropperCapture[1]


[1] McPherson, K. Review: How we got it wrong with breast screening. Published 17 May 2012. BMJ2012;344:e3450

[2] Palmer, K., Backman, L., Winblad, B., Fratiglioni, L., 2008. Mild cognitive impairment in the general population: occurrence and progression to Alzheimer disease. Am. J. Geriatr. Psychiatry 16, 603–611.

[3] Frances, A. DSM 5 Minor Neurocognitive Disorder. Psychology Today. 16 Feb 2012

[4] Gøtzsche, Peter C. Mammography Screening: Truth, Lies and Controversies

Soon all those . . .

Rapid-response in reply to Bad medicine: modern medicine: BMJ2012;344:e2346, published in BMJ 28th March 2012, http://www.bmj.com/content/344/bmj.e2346

Peter J Gordon’s reply, 5th April 2012, http://www.bmj.com/content/344/bmj.e2346/rr/577711

Soon all those . . .

From his frontline, Dr Spence states that he “fears soon all those with even mild cognitive impairment will be labelled with dementia.”[1] Is this just another example of fear mongering by one of the most challenging feature writers for the British Medical Journal? Only time will perhaps tell, but for now let us consider what several authorities say about this subject.

Dr Allen Frances, chair of the DSM-IV Task Force has been a leading and vocal critic of the various draft releases of the forthcoming DSM-V classification. His very real fear is that that “DSM-V will cause further epidemics of ‘over-diagnosis’”. One area specific to such concern is the DSM 5 proposal to include Minor Neurocognitive Disorder as a “presumed prodrome” to Alzheimer’s Disease. Like me Dr Frances believes that biological testing for prodromal AD will be an important milestone in the clinical application of neuroscience. However to do so effectively we need to better understand the pathology behind Alzheimer’s disease. It is still the case that the details of the pathological cascade are not fully understood, far less the link with normal ageing processes and the role of environmental triggers.

Future-of-DSM

Dr Frances believes that minor neurocognitive disorder “has necessarily to be based exclusively on extremely fallible clinical criteria that will have unacceptably high false positive rates – surely exceeding 50 percent. Why scare half the people taking the tests unnecessarily, especially when there is no effective treatment even for those who are true positives”[2]

In the Lancet Neurology, experts in the field of Alzheimer’s disease have attested that, whilst progress has undoubtedly been made on biological markers, much remains to be done in standardizing these tests, determining their appropriate set points and patterns of results, and negotiating the difficult transition from research to general clinical practice.[3]

I cannot then reassure Dr Spence regarding this aspect of his “contagion of iatrogenic harm.” Furthermore, surely we can agree with Dr Spence that good medical practice should allow questioning of itself. Given such request, a blog article by Jesse Ballenger of March 2010 is worth reading: though two years old, it does not seem out of date.

“The draft of DSM-V does propose significant changes that, while well-intentioned, may greatly extend the medicalization of aging and worsen the stigma of age-associated cognitive decline.” [4]

http://historypsychiatry.com/2010/03/19/dsm-v-continuing-the-confusion-about-aging-alzheimer%E2%80%99s-and-dementia/

My film on DSM-V is called Medical 203: https://vimeo.com/43599281 It was made last year (2012) and is just over 6mins long

This week’s BMJ (22 March 2013) gives over its Editorial to DSM-V:
DSM-5 and the rough ride from approval to publication: BMJ2013;346:f1918
http://www.bmj.com/content/346/bmj.f1918

“Rarely can any medical publication of any sort have so swiftly divided physicians and commentators. There is already enough analysis on this manual to fill several journals several times over, so I don’t intend to add a great deal. But given the incredible heat DSM-5 is already generating, the process of its creation and dissemination at the very least seems to demand serious attention, while the proposal to have the manual evolve as new evidence appears is a clear improvement on a once-a-decade bombshell.”
Edward Davies


[1] BMJ2012;344:e2346 Bad medicine: modern medicine. Published 28 March 2012

[2] Frances, A. DSM 5 Minor Neurocognitive Disorder. Psychology Today. 16 Feb 2012

[3] Giorgio Giaccone , Thomas Arzberger, Irina Alafuzoff, Safa Al-Sarraj, Herbert Budka, Charles Duyckaerts, on behalf of the BrainNet Europe consortium New lexicon and criteria for the diagnosis of Alzheimer’s disease The Lancet Neurology, Volume 10, Issue 4, Pages 298 – 299, April 2011

[4] Ballenger, J. DSM-V: Continuing the Confusion about Ageing, Alzheimer’s and Dementia. H-Madness blog 19 Mar 2010

A stitch in time saves nine

A reply to: Is the USA’s problem ours too? BMJ2012;345:e6617 By Margaret McCartney

Submitted as a Rapid-response:http://www.bmj.com/content/345/bmj.e6617/rr/609583

This feature article asks if we can relax about ‘needless overtesting,  overdiagnosing and overtreating.’ A principal concern raised is that of screening. [1]

Edwin-Morgan

‘A stitch in time saves nine’ has long suggested that a timely effort may prevent more trouble later on. This is the mantra behind medical screening: that early diagnosis is a good thing, that it reduces suffering, and that it makes such intuitive sense that there is no need to challenge it.

Gigerenzer in his book Reckoning with risk explores screening and suggests that we consider the ‘illusion of certainty, communication of risk, and how we draw conclusions from numbers’.[2]

The benefits of early diagnosis of dementia are well rehearsed, such that we have absolute agreement between medical, political, and third-sector domains. The enthusiasm for this seems to have generated an appetite for the widespread use of (largely unvalidated) cognitive ‘screening’ tests.

Primum non forgetful is a film that explores this: https://vimeo.com/55306311

Primum non forgetful

For cognitive screening, any certainty needs un-stitching. Forgetfulness is not an inevitable part of ageing, but there is an undeniable association of forgetfulness with age. Here screening over-simplifies, and cannot elucidate a complex set of ill-understood risks that (today) lack robust patho-physiological correlates (even upon death).[3]

What we do know, from epidemiology involving very large numbers (where pharmaceutical trials have found that current medicines are not ‘disease modifying’), is that no more than 50% of our elderly with mild amnesia progress to dementia. It is in this group that we risk a high number of false-positives.[4] A diagnosis of ‘Alzheimer’s’ is a life changing diagnosis. Our elderly are generally uncomplaining and may not live long enough to refute such a diagnosis.

It is interesting that Stephen Whitehead, Chief Executive of the Association of the British Pharmaceutical Industry has chosen to respond to this article[5]. The Pharmaceutical Industry has been guilty of presenting only the benefits of its products[6]. This reflects the current situation with screening where benefits are represented fully but far less the costs.

Films by omphalos on dementia, ageing and memory loss can be found here: MEMORY TRACES: https://vimeo.com/groups/182561

Memory Traces


[1] McCartney, M. Feature: Overtreatment: Is the USA’s problem ours too? BMJ2012;345:e6617

[2] Gigerenzer, G.  Reckoning with Risk: Learning to live with uncertainty. Published 2002

[3] Reisa A. Sperlinga et al Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease Alzheimer’s & Dementia 7 (2011) 280–292.

[4] Frances, A. DSM 5 Minor Neurocognitive Disorder. Psychology Today. 16 Feb 2012

[5] Whitehead, S. Rapid response to Overtreatment: Is the USA’s problem ours too? BMJ2012;345:e6617

[6] Goldacre, B. The drugs don’t work. The Guardian Weekly. 5 Oct 2012.

Bathwater and the baby

Response to the Editorial: The ‘continuum of psychosis’: scientifically unproven and clinically impractical.The British Journal of Psychiatry (2010) 197, 423-425

This response was published  in the Br J Psychiatry: http://bjp.rcpsych.org/content/197/6/423.short/reply#bjprcpsych_el_32500

This is a timely and welcome editorial from Stephen M. Lawrie et al.[1] I see this debate two ways: as a doctor needing ‘order’ to help ease suffering I agree that it is better, for the time being, to keep existing diagnostic categories of disorder however imperfect they may be. As a patient I of course want care, but I also want to be understood. Many of us are now considering that too much of life is being branded disorder: here none of us diminishes suffering, but we do look for better ways of explaining. Certain scientists may hate it – but our lives do have narrative. I think we underestimate mankind if we say that we cannot accept symptom based descriptions of suffering. I hope I am not wrong to suggest that most of the treatments that today used to improve mental health are not ‘disease specific’ but rather act upon either mood, thought, or both.

Nevertheless the cry for a spectrum approach to psychosis I would agree is premature and does not fit with my experience of so many troubled lives encountered. Peter Tyrer our Editor is correct to raise the potential problems of premature abandonment; both clinical and pragmatic.[2] However there remains a need to reconsider the neo-Kraepelinian model, if nothing more than to bring greater alignment with the technology that Lawrie et al now hope will be to our greater mental good. As the classification system is at present, it is my belief that neurobiological research cannot fully address complexity. My own view is that we have rather given too much attention to what Steven Rose has termed ‘neurogenetic determinism’ rather than applying biological research to life (baby and the bath water, however dirty). [3]

I would contest the presentation of the neurobiology literature as presented here by Lawrie in the opening paragraph of the Editorial, and quote: “based on highly replicable neurobiological differences.” This cites the paper ‘Schizophrenia, ‘just the facts’; what we know’ by Tandon, Keshavan and Nasrallah.[4] I have read this paper several times, but found, for all the studies and indeed all the words, neither one simple biomarker of any utility nor indeed anything even approaching specificity. Perhaps we should ask why this may be? Could it be that categories, clinically practicable, and needed for now, do not match the complex epigenesis of psychosis?

In concluding I would suggest that we do not forget history. James Clerk Maxwell was bold enough to stop looking for matter and to consider the energy fields that now govern our lives and indeed the technology which has been to our collective good. Do we need another Clerk Maxwell moment, scientifically brilliant, religion free, willing to see matters as simple as possible, but not simpler?

I have no such moment to offer. But brilliant Edinburgh folk like Lawrie have that tradition and they perhaps raise the chances that such scientific inspiration can help us once again.

James Clerk Maxwell

James Clerk Maxwell: a scientific giant for Hole Ouisia


[1] Lawrie, S; Jeremy, H; McIntosh, A. M; Owens, D. G. C; Johnstone, E.C: The ‘continuum of psychosis’: scientifically unproven and clinically impractical. The British Journal of Psychiatry (2010) 197: 423-425.

[2] Tyrer, P: From The Editor’s Desk. The British Journal of Psychiatry (2010) 197: 423-425.

[3] Rose, S.P.R. The biology of the future and the future of biology Perspectives in Biology and Medicine – Volume 44, Number 4, Autumn 2001, pp. 473-484

[4] Tandon, R; Keshavan, MS; Nasrallah;  H. A. Schizophrenia, ‘Just the facts’: what we know in 2008. Part 1: Overview. Schizophr Res 2008; 100; 4 –19.

The ‘diseased’ world of our elderly

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 – 6th March 2013:
http://www.bmj.com/content/341/bmj.c4670/rr/634772

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: http://avsleccap.uea.ac.uk/mediasite/Viewer/?peid=0c21c4a0f8f041ab93e6f8dee734a7b41d


[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