Forgive me for worrying about the lack of philosophy and ethics in science and healthcare today.
At the beginning of June 2008 I sent an e-mail to Dr Leon Eisenberg, a former child psychiatrist, and a man of philosophy and science:
Dr Eisenberg was then 89 years old and I wanted to convey how important his writings had been to me:
I did not expect a reply:
A year later Leon Eisenberg died.
After his death a memoir was discovered: which Eisenberg had named “Were We Asleep at the Switch?”.
Eisenberg suggested that a switch from ‘mind’ to ‘body’ has taken place in psychiatry as a discipline, which has led to overuse of medication.
He also argued that “monied interests” had been making de facto decisions on behalf of us all about the “science” of things that might affect us.
Eisenberg was worried that the overwhelming impact of economic considerations may have rendered, and might continue to render futile, the professional contributions of many brilliant, timely, and concerned working scientists.
There is a long standing joke about the lack of sunshine in Scotland.
Three years ago I began the process of raising a petition with the Scottish Parliament to urge the Scottish Government to introduce a Sunshine Act.
A Sunshine Act makes it a statutory requirement for all payments from commercial interests made to healthcare workers and academics to be declared publically. The metaphor is that sunshine brings full light. Both the United States of America and France have introduced a sunshine act.
The doctor in Gabriel García Marquez’ ‘Living to tell the tale’ says “Here I am not knowing how many of my patients have died by the Will of God and how many because of my medications”. Márquez often returns to the theme of medical ethics in his writings and reminds us that all interventions have the potential for benefit and harm. In ‘No one writes to the Colonel’, “a man [who] came to town selling medicines with a snake around his neck”. Here Márquez is reminding us of the long history of the financial opportunities open to healthcare professionals.
As a junior doctor in around 2000, I was handed by a Consultant a several hundred page document entitled “Behavioural and Psychological Symptoms of dementia”. The Consultant told me “this is the way forward!” Some years on I came to realise that this document had been developed, funded and disseminated by the Pharmaceutical Industry whose first loyalty, as a business, is to its share-holders.
In the wake of the dissemination of this document, prescribing of antipsychotics, sedatives and antidepressants in Scotland has been rising year on year. This has been described as mass prescribing, and is often long-term. Yet the evidence to support such prescribing is poor.
There is much promotion of “partnership working” between industry and healthcare. Yet we must remember that these two partners have different aims, and it is the responsibility of healthcare workers to follow the ethical approaches central to their professions. For example, the General Medical Council is clear about what is expected of doctors in their code “Good Medical Practice”. The potential for conflicts of interest is recognised and doctors are advised “you must be open about the conflict, declaring your interest formally”.
Since 2003, Scottish Government guidance has been in place to allow the declaration of financial interests of NHS staff, to their employing health boards. As a result of my petition, the Scottish Government has confirmed that this guidance is not being followed.
One key area of concern is the continuing professional education of healthcare professionals, another requirement of professional bodies. In at least two Boards in NHS Scotland, continuing medical education relies entirely on the financial support of commercial interests.
National and international conferences may also form part of continuing professional education. Because of the Sunshine Act in the USA, we know that a key-note speaker at a recent UK conference has been paid more than £3 million dollars by the pharmaceutical industry since the Sunshine Act was introduced. There is currently no way of knowing the scale of any payment made to a UK speaker sharing the same platform.
My experience of trying to clarify if there is transparency about financial payments in Scotland has been revealing. I have encountered significant defensive reactions from individuals and organisations. There has long been a body of evidence that, for example, prescribing behaviour is influenced by commercial interests, yet doctors find it hard to accept this. This collective denial would suggest that the forthcoming (voluntary) ABPI Register is unlikely to work as many will regard it as not applying to them and will therefore opt out.
As part of their consideration of my petition, the Scottish Government commissioned a public consultation exercise on a need or not for a Sunshine Act. The majority of participants expressed their view that all financial payments should be declared on a single, central, searchable register and that this should be a mandatory requirement.
The forecast for Scotland looks good: sunshine.
Dr Quintin Quackleben was the doctor portrayed by Water Scott in ‘St Ronan’s Well’
Dr Quackleben must be very old now!
Yet, I do believe he is alive and well.
I once carved into one of our garden trees: “Nullius in verba” or “take nobody’s word for it”. There is guid reason why this was chosen as the motto of the Royal Society.
Peter is passionate about science. But science needs to be dispassionate: science is based upon a determination to be as “objective” as possible.
My worry is that Dr Quackleben, that sleekit, Leyden adorned physician, creeps into the life of us all.
My view is that it is vital that science, of any time or age, feels able to ask questions of Dr Quintin Quackleben.
The Scottish Health Council copied me into this communication of the 16th March 2016 to their staff:
“I understand that a few people who took part in the gathering views project on the development of a Register of Interests have asked local offices whether a report summarising their feedback is available yet.
By way of an update, the Scottish Health Council’s report was shared with the Scottish Government a few weeks after the final discussion group was held on 5 February. Since then and at its last meeting because of the election period, the Scottish Parliament’s Petitions Committee closed the Register of Interests petition. The Scottish Government has advised, however, that the Cabinet Secretary wishes to formally send our report to the Committee together with comments from the Scottish Government on the next steps. Essentially, we see this as a positive outcome and a demonstration of the impact of our report.
The Scottish Government will keep us informed about an appropriate timing for publishing the report on our website once it has been shared with the Committee. Whilst this is likely to be after the election period, until then the report cannot be shared further. Please can local offices share this information with participants who may be seeking an update.”
I replied to the Scottish Health Council as follows:
"Many thanks for this update further to your last e-mail of the 25th February 2016 when you informed that I would receive a copy of the report as soon as it was drafted. I was disappointed that the Public Petitions committee chose to close my petition. As you are aware my petition sought a Sunshine Act for Scotland however the committee have closed my petition “on the basis that the Scottish Government has committed to review the need for updated guidance on what the petition calls for”. My petition specifically asked for legislation because of the complete failure of previous guidance to be followed. As you know I was concerned that this failure was not communicated to those participating in the public consultation. My petition was based on principles of transparency on an issue that affects us all. I am very disappointed that the process has also seemed to lack openness and that the petitioner and indeed the public will only see the contents of the consultation well after those in positions of power."
My petition was closed on the 8th March 2016, after the following consideration by the Public Petition’s Committee:
I was naturally disappointed.
I was invited by the Scottish Parliament to give feedback. This is what I said:
Thinking about the process that your petition went through, how fairly do you think your petition was dealt with?
Firstly I am impressed with how well organised and structured the PPC is. There are many petitions (a growing number?) and without the Clerks I cannot imagine that the committee members and Convener would manage to cope.
Secondly I am impressed that the PPC meetings are all recorded and archived both by Parliamentary TV and full verbatim Minutes. This is most commendable
My petition PE1493 was not fairly managed. The reasons are as follows:
(1) Apart from the initial opportunity to present my petition and engage directly with the committee there were no further opportunities to directly engage with the committee
(2) This lack of direct engagement deprives the public of consideration of the further evidence and correspondence collected by the PPC. Not once were any of the responses to PE1493 discussed publically in any detail by the PPC.
(3) Following my initial presentation of PE1493, all PPC meetings considering my petition were very short indeed. Many of them under a minute and the most common outcome was “the PPC will write to the Scottish Government”
(4) A huge amount of responsibility falls the way of the Senior Clerk and the Clerk’s team. Given this, and that this is a Committee for the public, who have elected the MSPs on the committee, it would seem important for the committee to acknowledge this. It would be helpful to set out clearly the qualifications and responsibilities of the Clerk and the line-management system, and system of appeal for any petitioner or member of public. Otherwise the PPC risks being considered undemocratic.
(5) As Petitioner for PE1493, in being asked to provide evidence from Scotland, to substantiate the request to consider legislation for healthcare workers and academics to declare financial conflicts of interest, I found myself in an impossible position. For example one piece of evidence, with full supporting material (film and the RCPsych approved power-point presentations of the academics) was refused publication by the PPC. In fact the PPC members, to my knowledge, never saw the letter. The decision not to publish was made by the Clerk based on Parliamentary Guidelines. I fully respect the right of the Scottish Parliament to determine what it publishes. However I feel very strongly that without this evidence (repeatedly asked for by the PPC, Scottish Government, and the Cabinet Minister for Health) that PE1493 could not be properly and meaningfully considered.
(6) PE1493 was closed. This was the deliberation of that decision of the PPC of 8th March 2016:
“There is stunned silence.”
Closure of my petition for a Sunshine Act for Scotland was then “minded” for closure by one of the members repeating what had been recorded by the Clerk in the papers for the meeting, that being:
“PE1493 by Peter John Gordon on a Sunshine Act for Scotland. To close the petition, under Rule 15.7, on the basis that the Scottish Government has committed to review the need for updated guidance on what the petition calls for and is consulting on the issue to gather views on what format it should take.”
My petition specifically asked for legislation because of the complete failure of previous guidance to be followed.
What did you hope to achieve by submitting your petition?
For a Sunshine Act to be introduced. For Scotland to lead the way in the UK.
To reduce harm caused by bias introduced into science by financial vested interests.
To address over-medicalisation and harmful misdirection of finite resources.
How do you feel about the outcomes?
Proud that I was brave enough and had sufficient stamina to pursue this petition.
Grateful that this Petition has encouraged wider discussion.
Disappointed at the skewed “Public Consultation” which deliberately chose not to explain to the consultees that existing Scottish Government Guidance has failed across our nation for more than 13 years. The information provided to the Consultees was drawn up by the Scottish Government.
Disappointed that PE1493 was closed without further opportunity to consider the evidence gathered and that it was closed based on the misunderstanding that PE1493 “called for updated guidance”
The Scottish Parliament could have done more to hold the Scottish Government to account.
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”:
Update, 5th October 2016. The following was published on the front page of the Scotsman newspaper: "Mental health prescriptions hit ten-year high"
The figures are from the Scottish Government and can be accessed here.
What follows is a transcript of a letter that I have sent to the Scottish Parliament on my petition for a Sunshine Act for Scotland:
Scottish Parliament Public Petition PE1493 on a Sunshine Act for Scotland
Letter from the petitioner, Dr Peter J. Gordon, 20th November 2015
Dear Members of the Petition Committee,
I thought that it might be helpful to give you a brief summary on matters relating to my petition.
The Scottish Government has commissioned the Scottish Health Council to undertake consultation with the public. This is underway with ten separate discussion groups with somewhere less than 100 participants overall.
As petitioner I met with the Scottish Health Council in June and was asked to provide a summary to help in preparing information to act as the basis for the discussion among the participants. I was asked by the Scottish Government if I wanted to review the information that they had compiled but was confident that the Scottish Government would provide a balanced summary including the evidence that had been carefully compiled for this petition.
Having now seen the “information” provided by the Scottish Government, that forms the basis of the consultations, I now feel that I was naïve to have been so trusting.
This petition would not have been raised, nor indeed considered by the committee, had it not been for the following evidence, evidence which has not been provided to the discussion groups:
- Current systems for declaring financial interests are failing in Scotland. No board in NHS Scotland has properly complied with the Scottish Government Guidance on transparency issued more than 12 years ago.
- The pharmaceutical industry, on average, spends twice as much on marketing activities as it does on innovation and developing new drugs. If healthcare workers are “educated” by those whose first loyalty is to shareholders then scientific impartiality may suffer. Each year healthcare workers have to ensure they have met professional requirements for continuing medical education. In at least two NHS Boards in Scotland, it is the case that medical education is entirely supported by sponsors such as the pharmaceutical industry.
- At least forty separate SIGN Guidelines, all currently in operation, have no records of the financial interests of those tasked to draw up the guidelines. This is concerning as these guidelines are generally followed by doctors to inform prescribing decisions for a wide range of medical conditions.
- A single, central register (rather than multiple failing registers) has been found in the USA and France to be relatively simple to set up and administer.
As petitioner my overwhelming concern is that by presenting unbalanced information the Scottish Government has arranged consultations which will lack in validity. One of the main themes of this petition is genuine transparency. I am therefore also disappointed to note that the authors of the information provided are not identified.
I realise that the consultation process is well under way but felt it important to present to the committee the significant concerns which I have.
I have found it impossible to communicate directly with the Director General for NHS Scotland.
The Director General for NHS Scotland does not reply to e-mails sent to him unless you follow this advice from his office:
Please note: The above includes only the first paragraph of the Deputy Director's letter of the 15 October 2015.
It is essential to note that the Director General had repeated opportunities to make it clear to me that this was the process of communication to be followed. Unfortunately this never happened.
My advice to the Scottish Public is to carefully follow the advice as given by the Deputy Director, Colin Brown. Otherwise you may risk being considered “unwell”, as I have been, for contacting the Director General through his, openly available Scottish Government, e-mail address.
Mr Paul Gray, the Director General for NHS Scotland: Year of Listening, 2016: "I've taken time to listen"
Over the last 8 months I felt it would not be constructive to attempt to communicate with the Office of the Director General of NHS Scotland. However, following the EU Referendum the Director General wrote a letter to all NHS Scotland staff in which he stated “I greatly value the contribution of every member of staff in NHS Scotland”. Given that this had not been my experience, I wrote to firstname.lastname@example.org expressing this reality which has led me to consider early retirement and asking: “I would be interested in your thoughts and if you have any words of support for me.”
I received the following reply (reproduced here exactly as it was sent):
Below: an audio recording of a contribution I made to a BBC Radio Scotland discussion on retirement:
My communications in the past to the Director General related to my endeavour to put patients first, specifically in the areas of an ethical approach to the diagnosis of dementia and relating to my petition for a Sunshine Act. The lack of support I received in return is strikingly at odds with the following statement made by the Director General on the Scottish Health Council film below:
“We worry about transfer of power, transfer of responsibility. As far as I am concerned, the more power that patients have, the better. The more power that individuals have, the better. Because they are best placed to decide on what works for them.
To be frank, there is very clear evidence that if people feel powerless their wellbeing is greatly reduced.
If people feel that they have a degree of power, a degree of autonomy that actually helps their wellbeing. So to suggest that it involves something that relates to a loss of power on the part of the service provider, in order for the service user to gain, I think is quite wrong.
I think the service user, the patient, the carer, can have as much power as they are able to exercise without causing any loss or harm to the service provider whatsoever. Indeed I think it is greatly to the benefit of service providers to have powerful voices, powerful patients, and powerful service users, who are able to help us understand what works for them.”
Our Voice: support from senior leaders. Published by the Scottish Health Council
Perhaps the following explains why this admirable rhetoric does not seem to play out in practice:
In Dumfries and Galloway Health: Opinions & ideas, the Director General for NHS Scotland had published in July 2015: “Leadership in a rewarding, complex and demanding world”. The article is worth reading in full but here is one quote:
This was the response of the Deputy Director as shared with the Director General when I shared my experience of the NHS initiative “Everyone matters”:
The above interview was published in the Herald on the 26th September 2016.
In the month before the Director General shared his views with the Herald he had sent the following communication. I acknowledge that I have been persistent but would maintain that this was because of the lack of any substantive responses from his Department. This sort of behind the scenes approach by those in a genuine position of power highlights the very culture that Mr Gray needs to address. I share the conclusions of the Editor of the Herald that “public statements of intent are not enough”.