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.

12umb

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.

17512952,16137671,dmData,Richard+Taylor+%25281300342889794%2529

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)

 

 

 

 

 

 

Re-labelling (and a bit)

I read this book recently [below].

I am approaching fifty. With age-related sight changes I find that my arms need to be longer!. So if I have misread “Sixty and a bit”  please do forgive me:

Now we are sixty and a bit

This book reminded my of a protocol issued by an NHS Board in Scotland:

4 april 2014 all over 65 MUST

As a doctor who tries his best to follow evidence-based medicine, I argued against this approach. I found that neither this NHS Board nor indeed NHS Scotland shared my concerns:

Brian Robson

With the recent publication of the Care Standards for Older People, the Chair of Healthcare Improvement Scotland confirmed:

Letter4b

It would appear to me that this “screening instrument” has been re-labelled by Healthcare Improvement Scotland

The 4AT was developed and promoted as:

010Tools

Recently the 4AT has been re-labelled as:

4AT validated UK Gov

The authors  4AT describe its key features:

(1) “brevity” (takes less than 2 minutes”), and

(2) that “no special training is required”

I should confirm that I use rating scales with patients as part of my daily professional life.

However I would never start out with a rating scale. To me, that would seem most disrespectful.

Rating scales can add to wider medical understanding. This is why, despite my awareness of any intrinsic shortcomings, that I continue to feel that they can be helpful.

The 4AT has recently been re-branded an “assessment test”. The 4AT was promoted for several years, with the support of Healthcare Improvement Scotland, as a “screening tool”. The validation studies, still underway, describe the 4AT as a “screening” tool.

Given that there has been no change to the test itself, I would suggest that this is re-labelling (and a  bit.)

Promises to listen to our elders

The “Care Standards for Older people in Hospital”, which replace the previous 13 year old standards, were published this month.

1345

As a doctor working in NHS Scotland whose work for twenty years has been dedicated to our elders, I submitted feedback on the initial draft. I started out by saying:

002-comment-on-care-standards-2015

With the recent  publication of the Standards I wrote to the Chair of Healthcare Improvement Scotland asking for clarification on the involvement of “older people” in the development of these NHS Scotland standards.

Letter1

In the Scotsman, the Chair of the the group developing the Standards, Dr Christine McAlpine stated that “we need to involve patients”:

Care Standards 12 June 2015a

In this article, Dr MacAlpine said:

Care Standards by Dr MacAlpine1

The Editor of the Scotsman summarised:

Care Standards in Scotsman - 9 June 2015b

Healthcare Improvement Scotland and Dr MacAlpine have stated the following:

care-standards-by-dr-macalpine2b

[please note: my appreciation is that 1345 may not actually 
represent 1345 separate individual comments. I say this as my 
two-page feedback on the drafts was separated into more than a 
dozen entries.  This would appear also to be the case for 
other "stakeholders"]

Having read though all the responses I found that none of the responses read as if ‘first-person’ comments. The comments read as if almost entirely by “stakeholders”. If so, this would represent Scotland’s elders by-proxy.

Unsure about this, I wrote to the Chair of Healthcare Improvement Scotland, for clarification. The following was confirmed:

Letter2

Healthcare Improvement Scotland have fully listed the “stakeholders” involved in the Consultation:

Consultation Feedback Report (stakeholders) Care Standards 2015

Having read carefully through all 1345 comments I am still left wondering whether the voices of our elders have been given reasonable opportunity to be heard? [proportionate to the experts, the stakeholders, and those directly tasked with authorising the final standards]

The ‘ladder of participation’ [below] has been widely cited in collective approaches to developing and drawing-up the best approaches to care:

ladder of involving our elders

In my letter to the Chair of Healthcare Improvement Scotland I asked for the average age of those directly involved in developing the Care Standards.

I also specifically asked if anybody deemed an “older adult” was part of the group who were tasked with drawing up these Care Standards for “older people”.

The reply I received from Healthcare Improvement Scotland stated that such information is exempt “in line with Data protection policy.”

Long before the final Care Standards were published I gave the following personal considerations on the draft Care Standards :

016 comment on Care Standards 2015

In the same week that the Care Standards for Older People  this analysis was published in the BMJ.

2