“two-thirds of diagnoses would be given to healthy people”

This Scottish report “Adding Life to Years” is now rather old. It once asked about ageism:Ageism in NHS ScotlandcThis week the UK National Screening Committee has expressed significant concerns about screening tests for cognition:Awful & inaccurate 8 April 2015In NHS Scotland if you are 65 and over and need to be in hospital, you will be “screened” for “cognitive impairment”. All NHS Boards in Scotland are being measured, in terms of “compliance” for such “screening”.Increased-screeningWithout consent, and the explanation of what these simple and “brief” “screening tools” can and cannot determine, and further explanation of the potential consequences, I would argue that NHS Scotland is taking an experimental leap, where any reasonable effort to give informed consent has been marginalised.

I have huge trouble with the prevailing idea that “identification” is somehow completely distinct from “screening”. The World Health Organisation covered this matter very clearly a few years after I was born. That work, in my view, is just as relevant today.

The Scottish Government has recently issued this reassurance:aaThe Mental Welfare Commission has confirmed that they support the approach of both the Scottish Government and Healthcare Improvement Scotland.

“The art grows larger and the science grows smaller as I think about it”

Unfortunately I could not make this recent conference. This debate was one that I had wished to attend. I have debated with Professor Alistair Burns before: however it was the subject of this particular debate, given the philosophy behind Hole Ousia, that captured my interest:Science has little placeI have just come across this most thoughtful reflection, following the debate by Professor Susan Benbow, Chair of the Ethics Committee of the Royal College of Psychiatrists: CropperCapture[1]CropperCapture[2]CropperCapture[3]And here is a reply to Professor Susan Benbow by Dr Dave Jolley:CropperCapture[4] CropperCapture[5] CropperCapture[6] CropperCapture[7] CropperCapture[8]I may have missed this conference debate but this communication between two colleagues heartens me enormously.

The Politics of Dementia

At the recent leaders Debate, David Cameron commented specifically on the progress made in  increasing dementia diagnosis rates in NHS England:Leaders-debate2I have long had concerns about the ethics of such an incentivised target based approach. Dr Martin Brunet has given this personal view:MartinNHS England’s policy became known as “cash for diagnosis”:Leaders Debate, dementia 2 April 2015 (2)Dr McCartney in her current BMJ “no holds barred” offers her view regarding political involvement in matters like this:Politicians screening for dementia 4 Apr 2015I have tirelessly advocated for timely approach to the diagnosis of dementia. This has now been enshrined in the “Glasgow Declaration”

The Glasgow Declaration from omphalos on Vimeo.Leaders Debate, dementia 2 April 2015Professor June Andrew’s recently gave the following robust opinion which I do not share:LRB - cash for diagnoses - June Andrews To conclude, I share the concerns expressed by Dave Forrest:Leaders Debate, dementia 2 April 2015 (4)

Freedom to speak up

Freedom05I am very grateful to the Scottish Government for replying to me on behalf of Jamie Hepburn, MSP, Minister for Sport, Health Improvement and Mental Health. Below you will find the Scottish Government reply and my response to it.

In NHS Scotland I have not found freedom to speak up.

David Berry, Scottish Government

Dear Peter
I refer to your email correspondence of 11 January to the Minister for Sport, Health Improvement and Mental Health. I have been asked to respond to you.

Your main concerns in your email are about the ethics and relative risks and benefits of cognitive screening for older people, including those with dementia. I know that this is an on-going concern and note that you have previously raised this issue with Healthcare Improvement Scotland.

The implication of your email appears to be that you are concerned that there may be what is effectively a national programme of screening for people with cognitive impairment (including dementia) in acute, and that older people do not have the benefit of information or the option to opt out of such screening. I hope I can reassure you that no national programme of that kind has been initiated. HIS have for some time had a focus on improving service response on delirium and I understand you have information on that from HIS.

As you may know, we have a three year strategy to improve dementia care in hospitals, including a 10 point action plan to drive up standards of care. Our approach includes development of clear standards, ensuring strong senior and clinical leadership, getting right staff in the right place and giving healthcare staff the support and training they need to provide safe, effective and person centred care to every patient, every time. Appropriate identification and assessment of dementia is a part of this overall approach. This work is supported by the networks of Dementia Nurse Consultants and Dementia Champions.

The Focus on Dementia in Acute improvement programme, launched in July 2014, has a specific focus on leadership, workforce development, working as equal partners with families and minimising and responding to stress and distress. The aim is to improve the experience, safety and coordination of people with dementia, their families/carers and staff.  Progress to date includes the identification of executive and operational leads within NHS Boards and Boards are currently reporting on progress to date on implementing the 10 Care Actions.

In addition, you know that Healthcare Improvement Scotland’s inspections of care for older people in acute hospitals include a specific focus on dementia and cognitive impairment – and this continues.  You can access their most recent overview report on the HIS website.

With regard to your point about raising concerns and the implication that you feel that recording your concerns has been discouraged at times, I would reiterate that we welcome open debate and discussions around these and other matters and we would welcome the opportunity to get the value of your perspective directly if you should choose at any time to take up our offer to get involved in the implementation of dementia policy.

We do recognise your passion, interest and expertise in these areas and hope you will reconsider the offer.

With best wishes

Scottish Government 
Directorate for Health and Social Care Integration
Mental Health and Protection of Rights Division

Reply to David Berry

Monday 1st April 2015

To the Scottish Government
Directorate for Health and Social Care Integration
Mental Health and Protection of Rights Division
St Andrew’s House, Edinburgh

Many thanks for replying on behalf of the Minister for Sport, Health Improvement and Mental Health after I had written following the debate on Mental Health that the Minister led in the Scottish Parliament on the 6th January 2015. I attended parliament that day to observe the debate. I am writing to acknowledge your reply which I received on the 30th March 2015.

You state that it appears to you that I am “concerned that there may be what is effectively a national programme of screening for people with cognitive impairment (including dementia) in acute care, and that older people do not have the benefit of information or the option to opt out of such screening.” I am writing to confirm this is indeed my concern as an NHS clinician in Scotland who has followed closely developments in this area. It is clear that the screening for cognitive impairment in NHS Scotland fulfils all the criteria of the World Health Organisation definition of screening.

You say “I hope I can reassure you that no national programme of that kind has been initiated.” I am afraid that I am not reassured. Following inspections Healthcare Improvement Scotland ask that all NHS Boards “cognitively screen” all patients 65 and over admitted to acute hospitals. It is also the case that Healthcare Improvement Scotland measure NHS Board “compliance” with “cognitive screening”. Given the dual role that Healthcare Improvement Scotland have (for scrutiny and improvement), it is my view that, not only do patients have no choice whether to be screened or not, but hospital managers and every employee in each NHS Board are disempowered to question such an approach.

Regarding my “implication” “that recording my concerns has been discouraged at times”, the truth is that after raising concerns I felt that I had no other option but to resign from my NHS post of 13 years. This followed a letter from the Executive Clinical Director of Healthcare Improvement Scotland to the Medical Director of the NHS Board I worked for. This letter went much further than “discouragement”. This letter made all sorts of defamatory statements about my professionalism and character, none of which I accept. This has been my experience of raising concerns about patient safety and wellbeing in NHS Scotland. I am glad then to appreciate that the Cabinet Minister for Health, Wellbeing and Sport has indicated that Scotland will be considering the “Freedom to Speak Up” review by Robert Francis. I am very grateful to hear that the Scottish Government “welcome open debate and discussions around these and other matters”. Unfortunately damage has been done to my career in NHS Scotland for raising such matters.

I am grateful that the Scottish Government “would welcome the opportunity to get the value of my perspective.” Currently I do not have time for such a commitment but as I confirmed recently to you I am happy to help, if I can, on specific matters.

In summary, in NHS Scotland we currently find:

  • Cognitive screening (as defined by the World Health Organisation)
  • that the potential harms of such an approach are not being discussed
  • that the individual’s right to consent has been marginalised

I realise and appreciate that the Scottish Government, along with many other organisations, may continue to disagree with me on the above. However I wanted to put my view on record. As this is a matter of public interest I will share your reply and my response on my website Hole Ousia.

I want to thank you again for your reply.

Kind wishes
Peter signature

Dr Peter J Gordon

Cc: Jamie Hepburn, Minister for Sport, Health Improvement and Mental Health
Cc: Shona Robison, Cabinet Minister for Health, Wellbeing and Sport
Cc: Geoff Huggins, Acting Director for Health and Social Care Integration
Cc: Penny Curtis, Acting Head of the Scottish Government’s Mental Health and Protection of Rights Division

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.