Justice must be seen to be even-handed

This is a short film about my experience of attending the Scottish Parliament on Thursday 29th June 2017.

I was there to support Marion Brown in her presentation of petition PE01651: Prescribed drug dependence and withdrawal:

However this film is based on an old petition that was being reconsidered by the Petitions Committee, that being, PE01458: Register of Interests for members of Scotland’s judiciary.

Lord Carloway was giving evidence. I was sitting right behind him. I found that I did not share his views on this subject.

This film is an edit of the full evidence session which can be watched (in entirety) here:

Credits:

‘Chasing Time’ by Dexter Britain (free, under common licence)

A Diary of Injustice in Scotland

The Scotsman – Leader comment of 30 June 2017

Painting of Holyrood, Scottish Parliament was sourced from here

Submission on PE1517: Polypropylene Mesh Medical Devices

Submission on PE1517 on Polypropylene Mesh Medical Devices

Made by Dr Peter J Gordon

Date of submission: 17th May 2017
Submission made in a personal capacity.

The Agenda for the Public Petitions Committee meeting of the 18th May 2017 includes a most helpful summary “Note by the Clerk” on PE1517: Polypropylene Mesh Medical Devices (Document PPC/S5/17/10/1). Having read this carefully, and in accordance with the first suggested “Action” (point 45, page 8), I would like to offer evidence. Before doing so I have listed below the most relevant sections of PPC/S5/17/10/1 in relation to the points of evidence that I wish to make.

In Annexe B of PPC/S5/17/10/1 the Interim and Final Conclusions of the Independent Review are listed side-by-side.

Conclusion 1, both Interim and Final, was that “Robust clinical governance must surround treatment”

Conclusion 3, both Interim and Final, was that “Informed consent is a fundamental principle underlying all healthcare”

In  Annexe C: Parliamentary Action (page 21 of PPC/S5/17/10/1) the Cabinet Minister for Health, Shona Robison answered question S5W-07749 by Neil Findlay, MSP on the 17 March 2017, by stating:

“Informed consent and shared decision making are expected prior to any procedure being carried out. The Chief Medical Officer goes into this in more detail in her Realistic Medicine report.”

The Clerk, in point 7, (page 2 of PPC/S5/17/10/1) confirms that:

“The Scottish Government does not have the power to regulate what medical devices are licensed for use in the UK. The Medicines and Healthcare products Regulatory Agency (MHRA) regulates medical devices in the UK”

The Clerk, in point 12 (page 3 of PPC/S5/17/10/1) includes quotations from the Preface of the Review’s Independent Report:

“We found some concerning features about how new techniques are introduced into routine practice”  and that

“We are aware that some of our conclusions have wider implications and see the need to embed this in patient Safety and Clinical Governance strands of the NHS”

Points of Evidence by Dr Peter J Gordon  (GMC number 3468861)

• HDL62:  the Scottish Government has acknowledged that this 
Guidance is not being followed by NHS Boards

• There have been media reports that NHS professionals working in 
Scotland, who are involved in educating NHS staff about Mesh
procedures, have been paid by commercial sectors who have 
financial interest in Mesh products. 

• PE1493, A Sunshine Act for Scotland, was closed in February 2016 

• A Public Consultation on PE1493 was undertaken by the Scottish 
Health Council. The Scottish  public, in majority, were of the view 
that it should be mandatory for  all financial payments made to 
healthcare workers and academics to be declared in a publically 
accessible form 

• No meaningful update has been provided by the Scottish Government 
since this Public Consultation was published more than a year ago.

• I  fully support the Chief Medical Officer’s “Realistic Medicine” 
initiative and I have suggested that Sunshine legislation should be 
considered an essential part of this development  

• I agree with the Independent Review that “robust clinical 
governance must surround treatment”. I am concerned that if the 
current situation continues, where “education” of health 
professionals may be significantly based on marketing, further 
examples of iatrogenic harm may occur in NHS Scotland.

• The Independent Review concluded that “informed consent is a 
fundamental principle underlying all healthcare”. If the advice 
given to patients is based on marketing, either partially or wholly, 
then informed consent may be denied patients. Further examples of 
Iatrogenic harm may then  unfortunately occur and healthcare 
in Scotland may risk being considered as  unrealistic 
rather than “realistic”.

 

Update, 22 May 2017:

Public Petitions Committee – Scottish Parliament: 18 May 2017 (click on image below to watch the full meeting)

The official report of the Public Petitions Committee of 18 May 2017

Sunday Post, 21 May 2017: ‘Probe to examine possible conflicts of interest in troubled mesh implant inquiry’

A letter that the Scottish Parliament felt unable to publish

With careful thought, and backed with full supporting evidence,  I sent the following letter of the 2nd February 2016 to support my petition for a Sunshine Act for Scotland.

The Senior Clerk of the Parliamentary Committee was of the view that this letter did not comply with the Scottish Parliament’s policy on the treatment of written evidence. I was therefore asked to redact significant sections of the letter.

After considerable communications to and fro, I replied as per this e-mail of the 3rd March 2016:

I fully respect the right of the Scottish Parliament to determine 
what it publishes.

I feel very strongly that my letter without the highlighted text 
merely reiterates what I have already said, and fails to provide 
the evidence that I have repeatedly been asked for.

So my position is that I do not wish to amend my letter of the 
1st February on PE1493.

My petition has since been closed. I therefore have decided to publish my letter to the Scottish Parliament in full along with supporting evidence. I have had professional advice that what is contained in this letter is not defamatory as it is based on veritas and has full supporting evidence:

Dear Mr McMahon
Petition PE01493: A Sunshine Act for Scotland

I realise that the Committee must receive a great amount of correspondence however I hope that the committee might agree that what follows is extremely important when considering PE1493.

Since I last wrote to the committee I attended, for accredited continuing medical education, the Royal College of Psychiatrists in Scotland Winter Meeting held on the 29th January 2016. It is this that has compelled me to write this update as it demonstrates beyond doubt that lack of transparency around financial conflicts of interest remains a serious issue. An issue with implications for both patient safety and healthcare budgets. It also demonstrates that Government action is the only way to address this.

The full powerpoint presentations of this Accredited meeting for 
Continuing Professional Development can be accessed here - but only
for members of the Royal College of Psychiatrists. 

I am a member of the Royal College of Psychiatrists and I am of the 
view, as a scientist, that these lectures should be available to all 
and not just to members.

One speaker highlighted the increase in prescribing costs in her health board area which was due to the high prescribing rate of a new antipsychotic injection, palperidone depot (XEPLION®). The next speaker demonstrated both the inferior effectiveness of this drug when compared to existing (far cheaper) depot medications and the perception amongst Scottish psychiatrists that it was more effective. Below you will see the flyer sent to mental health professionals in Scotland when this drug was launched:

002 Financial Conflicts of Interest, Scottish Psychiatry

I have highlighted one of the paid speakers, Dr Mark Taylor, because he also spoke at this week’s meeting where he reminded us that he was Chair of SIGN Guideline 131: The Management of Schizophrenia, which was published in March 2013.

At this week’s meeting Dr Taylor presented his declarations as follows: “Fees/hospitality: Lundbeck; Janssen, Otsuka; Roche; Sunovion”.

Dr Taylor commented on these declarations with the statement that “you are either abstinent or promiscuous when it comes to industry. Well you can see which side I am on”. Audience laughter followed.

The general question that arises is whether an influential professional such as a Chair of National Guidelines might earn more from the pharmaceutical industry than in his or her role as a healthcare professional? At present it is impossible for anyone to establish the scale of competing financial interests. To remind the committee the following avenues are not illuminating:

1. Royal College of Psychiatrists. This week’s meeting did not appear on the college database. In any case this database is neither searchable nor does it include specific details of payments and dates

2. NHS Boards. The committee has already established that, across Scotland, HDL62 is not being followed.

3. SIGN guidelines. The committee is aware of significant governance failings particularly in comparison with NICE which includes details of financial sums paid and associated dates.

4. Discussions with Senior Managers in NHS Scotland relating to the General Medical Council’s expected level of transparency has brought forth written responses describing my interest as “highly unusual” and “offensive and unprofessional”

5. The forthcoming ABPI register allows any professional to opt out of inclusion.

It is also worth repeating that the information provided to the public consultation on this petition failed to highlight most of the issues identified in points 1 to 5 above.

In terms of cost both to the public purse and the individual patient the Government’s stated wish for a “robust, transparent and proportionate” response would be fulfilled if a single, searchable, open register of financial conflicts of interest that has a statutory basis were to be introduced

The Mismatch

It is time to “bridge” this mismatch.

Time present.

01

02

04

05

It is still the case that psychological therapies are much harder 
to find in NHS Scotland than pharmaceutical therapies. 

Scottish Government figures, year on year, confirm this.

“As a critical friend”: awareness campaigns

I have just read:009 as a critical friendIt begins: [we]010 as a critical friend011 as a critical friendAs a doctor who openly asks questions I see great value in being a “critical friend”:008 as a critical friendThe Alzheimer Scotland Strategic Review outlines significant progress:012 as a critical friendThe current campaign by Alzheimer Scotland encourages “difficult conversations”:2 Feb 2015 Alz Scot early diagnosis aThis Alzheimer Scotland campaign promotes early diagnosis. As a critical friend I have expressed concerns about this campaign:014 as a critical friendA few months before this campaign was launched, Alzheimer Scotland:015-as-a-critical-friendThe Glasgow Declaration, signed by the then Cabinet Minister for Health, Alex Neil, enshrined “timely diagnosis” (below). It has now been signed by 1815 individuals and 50 organisations across Europe. This international agreement does not advocate early diagnosis.Glasgow-declaration signed Dr Margaret McCartney asked in her book “The patient paradox”:  001 as a critical friendand offered this concern:002 as a critical friendAge related memory loss (that is not dementia) can be a reality for us all as we age. It is however very far from inevitable. Such mild impairments generally follow a parabolic distribution through life. The following book by Douwe Draaisma covers the science of this:005 as a critical friendDr McCartney raised the following consequence of “awareness campaigns”:004 as a critical friendand concluded that:003 as a critical friendIt would seem to me that is virtually impossible to open a newspaper or watch any form of broadcast media today without being made aware of dementia or “Alzheimers”.

Such awareness may have unintended consequences:007 as a critical friendNeil Hay, SNP candidate for Edinburgh South, has followed the awareness campaigns by Alzheimer Scotland, a charity also based in Edinburgh:    Neil Hay 03Last week on social media, Neil Hay, SNP candidate for Edinburgh South expressed that older folk:018-as-a-critical-friendPerhaps then the question posed by Dr McCartney should not be:001 as a critical friendInstead we might ask, all as ‘critical friends’, the evidence and ethics behind such “awareness campaigns”.

Furthermore, in seeking health, should we be more wary of simplified messages that might carry unintended consequences such as anxiety, fear, ageism and stigma.

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.

A Sunshine Act for Scotland: the petitioner’s views

A pdf version of the following letter can be accessed here on the Scottish parliament website.

Sunday, 15 March 2015

To: Public Petitions Committee
The Scottish Parliament

Dear Public Petitions Committee
Scottish Parliament Public Petition PE1493 on a Sunshine Act for Scotland
Thank you for informing me that my petition is to be considered by the Public Petitions Committee at its meeting on Tuesday 31st March 2015.

You suggested that I might like to make a written submission for the meeting of the Committee informing me that this would be published online with the other evidence that the Committee have gathered for Petition PE1493. Since my last submission to the committee I have received a letter from the Scottish Government dated 24th February 2015 [included below] which asks my views as petitioner on a number of specific matters.  With the permission of Gordon Clark, Scottish Government, I thought it would be sensible to offer my views in a single letter copied to all.

My preference has always been to keep letters to the committee to one page, but unfortunately on this occasion, given the number of questions asked by the Scottish Government, this letter requires to be longer. I will begin this letter with a current summary of my position as petitioner for a Sunshine Act and then, in the second half of my letter, do my best to answer the questions asked by the Scottish Government.

My summary position as petitioner for a Sunshine Act:
Gathering evidence and necessary research to support this petition has led me to conclude that the pharmaceutical industry has had significant control within Scotland’s health sector and that this has been met with very little opposition or even analysis.

Open and transparent from omphalos on Vimeo.

CropperCapture[3]

The Scottish Government has since confirmed that across Scotland its own guidance, HDL 62, has been widely ignored.

CropperCapture[4]

The Scottish Government position states that we should consider “existing legislation”.

The Scottish Government are of the view that we have two safeguards: (1) professional bodies and (2) “the significant progress towards voluntary registers by the pharmaceutical industry.”

Considering these in turn:

Firstly, regarding professional and regulatory bodies:
Niall Dickson, the Chief Executive Officer for the General Medical Council (GMC), the professional regulatory body for doctors, has recently stated that “Parliament has not given us powers”. This was the official GMC response to Fiona Godlee, Editor in Chief of the BMJ who stated in her recent BMJ editorial that “the profession must take the lead to protect patients and maintain public trust. The GMC should act, and a public register of UK doctors’ financial interests is long overdue.”

I have been in communication with the Royal College of Psychiatrists, the additional “regulatory body” of which I am a member. This recent communication, with the Royal College of Psychiatrists, relevant to this petition, can be read here. In summary the Royal College of Psychiatrists guidance again refers to local registers, as in HDL 62, which we know are not being maintained.

Secondly, the “significant progress towards voluntary registers by the pharmaceutical industry.”  (Scot Gov statement)
It is the case that the Association of British Pharmaceutical Industries (ABPI) have led on setting up what they have termed as a “Central Platform”. From 2016, this platform will gather individual payments and record these in an open, central, searchable database. However, it is the case that any healthcare professional can opt-out of any disclosure of any financial payments made to them on this platform.

The Scottish Government, in a letter to me dated 24th February 2015, [see annexe] asked my views as petitioner on nine separate points.  What follows are my responses as given under each Scottish Government question:

(1) Is your primary concern around ensuring appropriate prescribing?
This is my primary concern.

This is a longstanding concern based on the ethical principle primum non nocere “above all first do no harm”. My view, as petitioner, is that appropriate prescribing must try to achieve maximum benefit and minimum harm: a ratio crucial at both individual and population level.  Evidence has repeatedly revealed that harm and/or risks associated with prescribing may emerge only after the pharmaceutical industry has made its money. My view, as petitioner, is that “appropriate prescribing” in Scotland should follow evidence-based science that is free from financial conflicts of interest. Prescribing should be based upon scientific objectivity alone. Prescribing should not be determined by market forces.

One of my original motivations for raising this petition for a Sunshine Act was an appreciation that pharmaceutical companies use paid speakers, consultants and researchers to promote the off-label use of drugs in Scotland:

222

This is just one example of evidence that this happening. I covered a range of other examples in my original submission to the committee:

 (2) Who should have responsibility for keeping and updating information on payments (including payments in kind) received?
I would like to see an independent body that is set up to maintain a central, single, open, searchable register that is updated on a planned and scheduled basis and which is tied to professional accountability and governance. Such a register should include not just doctors, but pharmacists, academics, nurses, allied health professionals and indeed advisors to charities.

(3) What should happen in the event of non-compliance?
It is my view that any system that is developed to replace HDL 62 must include meaningful sanctions to be used in the event of non-compliance. There is always the potential for litigation following any harms caused.

From a practical point of view, enforcement would be likely to involve a number of different approaches. Failure to follow legislation may involve regulatory bodies. For example, in the case of doctors this would be with the General Medical Council.

CropperCapture[5]

“Non compliance” also has a dimension that may be beyond the employed individual. At least two NHS Boards in Scotland, NHS Lothian and NHS Forth Valley, have confirmed that they have zero budget to support medical education. The financial support of this education is thus solely through commercial arrangements. The details of this are covered here.

(4) Which professions and groups should be covered?
This should include not just doctors (both at primary and secondary care), but also pharmacists, nurses, academics, allied health professionals and indeed advisors to charities. It should also apply to any commissioners of healthcare services in Scotland including all those involved in improvement work.

As petitioner, part of my research confirmed in November 2013 that 44 separate Scottish Intercollegiate Guidelines (SIGN) guidelines had no records of declarations of interest. This concerns me greatly as does the limited governance of the experts involved in the Scottish Medicines Consortium.

1234

(5) Who/what should be covered by the terms ‘industry and commerce’?
The approach taken in France to legislation appears to be a reasonable model. The USA has also introduced Sunshine legislation. As petitioner, I would suggest that there is much to be learned from the approaches taken in France and the USA.

“Industry and commerce” might include: the pharmaceutical industry; device and implement manufacturers; and commercial enterprises involved in diagnostics, nutritional supplements and digital technologies. As petitioner, I would also suggest that academics, patient groups and charities are included.  In France, disclosure of financial support to patient organisations has been a legal obligation since 2009.

(6) Should there be a threshold for providing information on payments (including payments in kind) and if so what should that be?
I think this a matter that should be open to consultation. I would suggest a similar framework to that used by this voluntary database:

who pays this doctor

(7) If registers of payments (including payments in kind) were established what should the status of these registers be?
A national register requires legislation to be put in place to make it meaningful, robust and properly transparent. Timescales for submissions would be clearly defined. This register should be open to all with a link placed obviously on each NHS Board homepage.

All medical educational conferences held in Scotland should have a homepage link to this single, open, searchable database. Thus duplication of recording would no longer be an issue.

001

(8) Do you have experience of concerns raised by patients about these issues that you can share?
My experience of patients is that they trust NHS staff to be acting solely in their best interests. Sadly evidence demonstrates that this is not the case:

CropperCapture[7]

(9) Generally, what is your view on what a robust, transparent and proportionate response would look like fit for 2015 and beyond?
I hope that I have given an indication of my perspective on this. I am most grateful to the Scottish Government for seeking my views as petitioner.  I wondered if it might be helpful to conclude this letter with a range of views of some others who have also considered this area:

004Dr McCartney, General practitioner in Glasgow, BMJ Columnist, Broadcaster and Medical Author

CropperCapture[8]

010

CropperCapture[9]

Closing statement:
When politicians are held to higher standards than doctors, it is my view that it is time for tighter regulation of conflicts of interest in healthcare in Scotland.

Scottish Government guidance, HDL 62, has relied on self regulation and this clearly has not worked.

Moves by the drug industry are welcome but will encounter the same issues as HDL 62.

As a scientist as well as a student of humanities, my view is that Scotland’s wellbeing, reputation and worldwide standing would all benefit from taking a leading approach in this area.

I hope this update is of some assistance to the Committee ahead of the 31st March 2015.

Yours sincerely,

 Peter signature

Full details of all evidence I have collected for this petition, including my writings, publications and films, can be accessed from this one page.

Letter to the Petitioner from Gordon Clark, The Scottish Government, Healthcare Quality and Strategy Directorate, Pharmacy and Medicines Division.

Letter from Gordon Clark, 25 Feb 2015

Alzheimer Scotland: in a “muddle”?

My previous post was about the latest Alzheimer Scotland “campaign”: Let’s talk about dementia which was launched this month:2 Feb 2015 Alz Scot early diagnosis2

I sent my post to Alzheimer Scotland and to a number of those who signed the “Glasgow Declaration” in October 2014:Glasgow-Declaration

This is how the second Dementia Strategy (2013-16) was introduced by Alex Neil, MSP, then Cabinet Minister for Health & Wellbeing:Not-true,-but-there-you-go

You will note the Cabinet Secretary states that this first Strategy was “focused on improving care” through “more timely diagnosis”. In fact Scotland’s first dementia strategy makes no mention of timely diagnosis of dementia. Glasgow-21-Oct-2014-(18)

However, Scotland’s second Dementia Strategy was explicit:Key-outcomes-strategy-2

All of this is necessary backdrop to the “position statement” made on the 10th February 2015 by Alzheimer Scotland. I have heard several people describe this position statement as “muddled”.1

I have heard many elderly patients say, that when assessing their overall cognition, that it can feel like an “interrogation”. It is my view that we should listen to our patients. Grant King, lecturer in mental health nursing with the University of Dundee published an article about this in the Journal of Mental Health Nursing. It is worth reading. I partly consider it here.007

In their current “campaign” Alzheimer Scotland “encourage us” to have “difficult conversations” with our elders. This encouragement made me consider if it might be fair to reverse the roles and to have a “difficult conversation” with Alzheimer Scotland?

The sort of “conversations” that Alzheimer Scotland “encourage” would most likely bring a cognitive examination for the person so discussed. The Mini Mental State Examination now has copyright, and the Adenbrooke’s Cognitive Examination is rated out of 100. For these reasons I have chosen to structure this “difficult conversation” with Alzheimer Scotland with a template that follows the Mental State Questionnaire (MSQ). This is a shorter ten item questionnaire.Difficult conversations

The Chief Executive Officer for Alzheimer Scotland, Henry Simmons, has clarified that “the Scottish Government are not involved with it at all and we have not asked the Government to support our position or strategy around this.” Mr Simmons also stated that Alzheimer Scotland respect the concerns that I have raised. In reply to Mr Simmons, I reaffirmed:

“I also respect the good intentions of Alzheimer Scotland. For me, this is not in any doubt.”

Henry Simmons Glasgow Declaration

The following questions will be based on points made in the “position statement” by Alzheimer Scotland of the 10th February 2015.

01Alzheimer Scotland states:PS01

MSQ question for Alzheimer Scotland:
Do you think there might be a risk of giving “post-diagnostic counselling” to the 60-80% of our elders with “mild symptoms” that epidemiological studies (fully evidence-based) have found will never progress to clinical dementia?

02Alzheimer Scotland states:PS02

MSQ question for Alzheimer Scotland:
Is this a discussion only held in “medical circles”?

*my personal experience is that “patients”, family, carers, doctors, nurses, academics, ethicists, philosophers, and others, ask (in various ways) what may be a reasonable boundary to “early”? [especially when we are talking in terms of a life-changing diagnosis]

03PS03

MSQ question for Alzheimer Scotland:
So why then did Alzheimer Scotland sign the “Glasgow Declaration” that enshrines the right for a timely diagnosis? The Glasgow Declaration does not include “raising the awareness of early diagnosis”

04Alzheimer Scotland states:PS04

MSQ question for Alzheimer Scotland:
Given the established parabolic distribution of memory through the course of life, on what scientific basis does Alzheimer Scotland “emphasise the importance” of “memory problems” in isolation from ageing, functional impairments, and crucially (in terms of Internationally accepted clinical criteria for dementia) other forms of cognitive impairment?

05Alzheimer Scotland states:PS05

MSQ question for Alzheimer Scotland:
Does this not seem to be an inconsistent, confusing and potentially harmful approach for Alzheimer Scotland to take?

06Alzheimer Scotland states:PS06

MSQ question for Alzheimer Scotland:
Have you consulted and gathered the wider views of Scotland’s “elderly” [those aged 65 or over] as a whole?

07Alzheimer Scotland states:PS07

MSQ question for Alzheimer Scotland:
Regardless of the term we may use [“screening”, “case-finding”, “detection”, “early diagnosis”, “timely diagnosis”] should we not – when it comes to matters of public health – seek to follow the ten criteria set by the World Health Organisation (Wilson & Jungner)?

Established global research finds that “early recognition” can provide false-negative and false-positive diagnoses. In more basic terms: it can be harmful. Drs Wilson & Jungner provided criteria to help us. Dr Wilson was an Edinburgh doctor, largely forgotten but NOT to those interested in public health.

08Alzheimer Scotland states:PS08

MSQ question for Alzheimer Scotland:
Are you sure these statistics are fully valid and that they support your conclusion?

[it is noted that this statement is linked to a Scottish Government target.]

09PS09

MSQ question for Alzheimer Scotland:
Your position statement makes valid points here. However ALCOVE recommends (strapline):ALCOVE

So the question is: why has Alzheimer Scotland departed from ALCOVE?

10Alzheimer Scotland states:PS10

MSQ question for Alzheimer Scotland:
This is the only part of Alzheimer Scotland’s position statement which in any way recognises the complexity of cognitive changes over the course of life. Does Alzheimer Scotland think that this campaign takes account of the scientific questions that remain unanswered and which include an appreciation of the influence of culture, society and ageing itself?

SUMMARY:
I do hope that Alzheimer Scotland will continue to engage with me in this conversation. I fully accept that it is a difficult conversation. I also understand that not all questions may be easily answered.

Alzheimer Scotland is a charity that I support – and for whom I was (for a brief time) a medical representative on their policy committee

I do hope that Alzheimer Scotland will appreciate that my questions are well intentioned, just as I appreciate that good intention is the basis of the “Let’s talk about dementia” campaign

When forgetfulness becomes pathological

A few years back I was a member of the Policy Group for Alzheimer Scotland. I resigned as I was concerned about some of the approaches being taken at a national level including significant concerns about the target set for the early diagnosis of dementia.

This week a promotional e-mail arrived from Alzheimer Scotland:2 Feb 2015 Alz Scot early diagnosis2  The “Let’s talk about Dementia” campaign was introduced as:

“we want to open up the discussion on dementia and raise the awareness of the importance of early diagnosis”

The guidance given is comprehensive and explicit. An Alzheimer Scotland helpline is available 24 hours:How-you-can-help

The good intentions are clear. Yet I have significant concerns with this approach.

I have previously covered my concerns about early diagnosis here.

I have also considered the wider scientific evidence on memory loss as we age. This post on the parabolic pattern offers a summary.

The risk of the approach taken by Alzheimer Scotland in this current campaign is that all forgetfulness is “understood” as pathological. As disease. As “early dementia”. As “Alzheimers” (as dementia may synonymously be misunderstood). This would be a false “understanding” for a significant number of our respected elders in Scotland. Such misunderstanding risks undermining their “rights, dignity and autonomy”.

In October 2014 I attended the Conference below. Here is a summary of this conference by Henry Simmons, Chief Executive of Alzheimer Scotland:HSimmons

I welcomed “The Glasgow Declaration” endorsing as it  does a timely approach to the diagnosis of dementia:

Signing-the-declarationI was delighted to see this agreement signed as I have been tireless supporter for timely diagnosis.

Glasgow-Declaration

The Glasgow Declaration follows the guidance of the UK National Screening Committee and for Europe, ALCOVE, Timely Diagnosis of Dementia.

The Glasgow Declaration from omphalos on Vimeo.

So, with this recent history in mind, here is my [fictional] letter to the letters page of any newspaper published in Scotland. Here, I am following the advice of this latest Alzheimer Scotland Campaign:

5th February 2015

"Dear Editor,
I am writing as I am concerned about the short term memories 
of a few professional colleagues. 

This is a "difficult conversation" for me to have. 

I have followed advice and will not mention any names 
but can give designations. One is the recent Cabinet Minister 
for Health, another is his Senior Government Advisor 
and the last is the Chief Executive of Alzheimer Scotland.

It seems that all three have forgotten that they signed, 
in October 2013, the Glasgow Declaration based on 
the timely diagnosis of dementia.

I must admit feeling a bit confused myself as to why we have 
such forgetfulness. I do hope that it is not pathological.

Yours sincerely
Dr Peter J Gordon

“When managers rule”

The title from this blog-post is not mine. “When managers rule” was the title Professor Brian Jarman gave to his British Medical Journal Editorial published two years ago this Christmas.

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At the time that the Editorial was published my family, many of whom have had a career in healthcare, found themselves discussing it. The Editorial also attracted a significant number of written responses to the BMJ.

Two years on from the publication of Professor Jarman’s Editorial, my thoughts have returned to it given the recent short-life review of quality and safety in Aberdeen Royal Infirmary:

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I generally find that narrative is the best way of approaching, and perhaps best appreciating, complex matters such as this.

Here I shall set out a narrative of my two years as an NHS consultant since Professor Jarman’s Editorial. I hope that my experience can add, in some small way, to the wider appreciation of “culture” and the potential consequences for NHS healthcare.

In a previous post I noted how often NHS staff mentioned the word “disconnect” in the report into Aberdeen Royal Infirmary:

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Entry 9.24 of the report seems to capture the disconnect, with words used like “disengagement” and “detached”. It also raises the experience of frontline staff where concerns were “not being satisfactorily addressed” or “being met with silence”:

This word, “disconnect”, was also used by Sir Robert Francis in his report on the Inquiry into the terrible failings at Mid-Staffordshire NHS:

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NHS Forth Valley, at their Board Meeting of April 2014, discussed (under item 8) a “FRANCIS ACTION PLAN”. This plan was led by the Medical Director:Discussion took place around the detail of the Francis learning. Dr Murdoch advised that this would be an ongoing process which will require regular updating and scrutiny.”

Not just wrong it was truly dreadful from omphalos on Vimeo.

NHS Forth Valley agreed to follow the recommendations of the Real World Group  that “Boards should identify the impact of how they work as a board, on their degree of engagement, morale and wellbeing.”

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In a wish only to assist the “Real World Group”, in the following posts I humbly offer my feedback to NHS Forth Valley Board:

 Ethics, a doctor and his hairt-beat 

Seeking Transparency

 A little tearful (and McCall Smith)

 “Believe me, that is not the way to get things done”

 Social Media policies (NHS Scotland) 

In response to Professor Jarman’s Editorial, Narinder Kapur said in January 2013: “sadly, in parts of the NHS patient care is sometimes seen as secondary to managerial imperatives. If a clinician is performing to high standards in terms of clinical excellence and professional conduct, yet gets on the wrong side of a manager or a medical director, whether it be for whistleblowing or other reasons, he/she may well suffer serious consequences as a result”

Narinder Kapur considered that “Managers and medical directors need to be held more accountable for their actions. Any disciplinary process brought by managers or medical directors must respect the three key principles of independence, expertise and plurality”

NHS UK provides helpful advice on workplace bullying, which it suggests can involve “excluding and ignoring people and their contribution and unacceptable criticisms”. My workplace narrative, described in the above posts, carries such experiences. This ultimately led me to offer my resignation from NHS Forth Valley after 13 years continuous employment.

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Around the time that the Medical Director led NHS Forth Valley’s review into “Francis”, I was “invited” by formal letter to attend an “informal” meeting by him. This meeting left me very distressed. At this “informal” meeting the Medical Director and General Manager for NHS Forth Valley used words to describe my “behaviour” such as “threatening”and “intimidating”.  I was reminded at the meeting that I was “obliged contractually to reflect on this”. 

Dr Philip Pearson, Consultant Respiratory Physician, Plymouth Hospitals, felt that “perhaps the most disturbing comment” of Professor Jarman’s Editorial was “NHS managers  reliance on ‘shame and blame’ and fear of job loss as quality improvement driver.”

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I do not regard myself as a “whistleblower”. I raised concerns about patient care by following my employer’s system of line-management. Nevertheless, my experience would seem to have many similarities to those described by whistleblowers, such as bullying, mischaracterisation, stigma and isolation. It was this, and not mental illness, that led my doctor to recommend that I take sick-leave. I was off for 6 months. Whilst I was off, the Consultant Locum covering for me, also had concern about patient safety and wrote to senior managers in NHS Forth Valley. In communication over these clinical concerns the Locum Consultant concluded that the Medical Director demonstrated:

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In my experience, NHS Forth Valley management ask their staff to “reflect” on their behaviour. My concern is that managers may not find the same need in themselves.

In my 13 years as a consultant in NHS Forth Valley our service for the older people of Clackmannanshire had not a single visit from any Medical Director.

In the year following my 6 month “sickness” absence, the Service Manager in charge of our service visited once.

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I welcome that the Scottish Government supports duty of candour as confirmed by the former Cabinet Secretary for Health & Wellbeing. The recent findings of the inquiry in NHS Grampian reveal many of the barriers to achieving this. It is clear that this is not limited to one Scottish NHS Board: David Prior, the chairman of the Care Quality Commission for NHS England recently disclosed that one in four staff have reported bullying, harassment or abuse from colleagues and managers. Mr Prior was also concerned that the NHS is failing to listen to those who challenge poor care and champion the rights of patients. He says those who try to speak out are too often “ostracised” by their colleagues and managers.

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The recent review into suicides by doctors who were undergoing fitness to practice investigations revealed that 54% had been referred by their employers. This has left me reflecting on my own experience with NHS Forth Valley in trying to put patients first. My experience was that senior managers repeatedly reminded me of the GMC and “Good Medical Practice”. I was urged to “reflect”.

In a recent BBC interview, Shona Robison, the current Cabinet Minister for Health, Wellbeing and Sport was asked if she thought the “toxic culture” reported in NHS Grampian could be happening elsewhere in Scotland? The Health Minister seemed almost to sigh, and then momentarily paused, before reminding us of the role of Healthcare Improvement Scotland.

“Toxic culture” from omphalos on Vimeo.

The external inquiry by Healthcare Improvement Scotland into NHS Grampian identified a range of concerns and issues which included “the relationship between some senior medical staff and the NHS Grampian senior leadership”. In consideration of this inquiry the current Medical Director for NHS Forth Valley stated:

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Conclusion:
In trying to put patients first my recent experience as an NHS Consultant has been very difficult.

Recently at a family gathering I was asked, given the distress that trying to put patients first has caused, “was it worth it?

This was a difficult question to hear and contemplate. I do know that I am not perfect. I also know that we have now had two external enquiries, one in England and one in Scotland. Two major NHS inquiries in a matter of years. Both inquiries concluded that there seems to be something generally wrong in NHS culture. Both inquiries highlighted a growing “disconnect” between managers and frontline staff.

My fear is that both the “culture” and the “disconnect” are not being effectively addressed. Professionalism and candour risk being further devalued as a result.

So “was it worth it?” Despite the experiences I have outlined, I wish to document some personal successes:

  • I advocated a timely approach to the diagnosis of dementia, when virtually nobody else would. It is now considered the best approach across Europe.
  • I have promoted transparency across NHS Scotland (and will continue to do so)
  • I continue to advocate that we routinely consider ethics in every healthcare encounter