On the 26th of April 2016 I attended the Cross Party Group on Mental Health and Older People, Age and Ageing, held at the Scottish Parliament. The following is an account of my experience of this meeting and some reflections on conversations that have followed it.
At the end of this post are included two papers that were submitted ahead of the Cross Party meeting: a paper by me entitled “May it be granted the older you are” and a paper by Mr Hunter Watson entitled “Psychoactive Medications”.
I have been to quite a number of Scottish Parliamentary Committee meetings but this was the first Cross Party Meeting that I have attended. How welcome it was to see such a good turn out with a packed committee room. I am inclined to conclude that this indicates how important it is that we value our older generation. It was however unfortunate that other parliamentary business meant that various parliamentarians had to absent themselves.
I was keen to attend this meeting for a number of reasons. Having an interest in the Scottish Government’s “Ten Year Vision” for Mental Health I had attended one of its consultation events in Edinburgh and had also submitted a written response. There were 574 written responses in total, which again seems most encouraging.
Given that opportunities for anyone to raise discussion, at parliamentary level, about the Scottish Government’s ‘Ten Year Vision’ may not come along very often, I felt it was important, as the only NHS psychiatrist for older adults at this Cross Party meeting, to do my best to put forward the experiences of my patients.
I was very impressed that the convener, Sandra White, MSP made sure that as many voices as possible were heard at the meeting. I wrote to thank her for this.
I was particularly struck by the compelling and worrying testimonies of Rosemary Carter and Dianna Manson whose experiences as older adults with mental health issues remind us starkly how important it is that policy makers consider very carefully the consequences of visions set for the years ahead.
Rosemary Carter highlighted her experience of how the dominance of cognitive assessments in my profession has reduced capacity to care for those who have non-cognitive mental ill health. As a professional working in this area I share her concern and am of the view that Rosemary is far from alone in her experience. When the Dementia Strategies and Targets were first introduced in Scotland from 2010 onwards, it was my concern about this potential for inverse care, and for increased stigma associated with ageing, that led me to advocate publicly for a timely approach to the diagnosis of dementia. I did so at a time when this approach had no support whatsoever from policy makers, healthcare or the Mental Welfare Commission.
I thought that Angela Dias of “Action in Mind” spoke with clarity and genuine concern about what she termed “institutional discrimination” relating to older adults with mental health issues living in Scotland today.
Mr Hunter Watson’s concerns about human rights for older adults do, in my opinion, need to be carefully considered.
The Principal Medical Officer for Scotland, Dr John Mitchell, acknowledged several times the evidence that those with chronic mental health disorders die 15-20 years earlier than those who do not. He stated at this meeting that this is a “huge finding, a universal finding, a huge inequity”. Academics are increasingly of the view that one of the potential reasons for such early death has been the prescribing of psychiatric medications. This is why I mentioned a number of times at the meeting the widely gathered evidence (PE1493, Sunshine Act for Scotland) that the pharmaceutical industry continues to have a significant role in the “education” of Scottish doctors in the prescribing of psychiatric medications.
I thought the presentation by Dr David Christmas was most interesting and share his concern that there is an imbalance in research studies across the age ranges. I raised a number of questions with Dr Christmas because he works as a “super-specialist” and so deals with a very select group of patients.
At the Cross Party meeting Dr Christmas stated that “depression is under-recognised across all age groups” and that “maintenance treatment has a good risk-benefit ratio.” He did so without acknowledging that these statements cannot be made with absolute certainty.
I have attended a wide range of GMC-required Continuing Medical Education (CME) and so over the years have found that I have attended a number of educational talks given by Dr David Christmas. He always carefully talks through his declarations of interest which for at least the last five years do not include any financial interests other than his employment with NHS Tayside as the Clinical lead of the Advanced Intervention Service.
Dr Christmas is a member of the Psychopharmacology Committee of the Royal College of Psychiatrists. The Chair of this most influential committee (in terms of the prescribing of psychiatric drugs) is Professor Allan Young, a “key opinion leader”. Professor Allan Young declares his extensive financial interests as follows: “Paid lectures and Advisory Boards for all major pharmaceutical companies with drugs used in affective and related disorders” . A similar key opinion leader, Professor Stephen Stahl, gave a keynote talk at the British Association of Psychopharmacology in 2015. As he is American, and they have a Sunshine Act, it is possible to establish Professor Stahl’s earnings from promoting psychiatric drugs. When last looked at, this was more than $3.5 million dollars. In the absence of a similar Sunshine Act in the UK we cannot establish the scale of payments made in the UK.
Dr Christmas has given educational lectures alongside Dr Hamish McAllister-Williams who is also a member of the Psychopharmacology Committee of the Royal College of Psychiatrists (RCPsych), and who was appointed in 2012 as Director of Education for the British Association of Psychopharmacogy (BAP).
Dr McAllister-Williams declares a wide range of financial interests with the Pharmaceutical Industry. Dr McAllister Williams is “a major contributor” to the RCPsych and BAP Continuing Professional Development programme.
It was with this knowledge, of the influential position that Dr Christmas has in terms of the education of UK psychiatrists, that after the Cross Party Meeting I wrote to ask Dr Christmas to ask if he might support a Sunshine Act for Scotland? At the meeting Dr Christmas took time to carefully address other biases (which I share his concern about) but did not do the same for the financial biases that may affect the advice given by key opinion leaders. The same potential exists for research itself.
In my correspondence with Dr Christmas I reminded him that I prescribe both antidepressants and antipsychotics but explain to patients that the best evidence we have is generally based on short-term studies and that all interventions (including psychological interventions) can have both benefits and harms.
I have confirmed with Dr Christmas that I share his determination to seek science that is as objective as possible and that this means that I realise that biases do indeed come in all forms and not just financial. I simply argue that science should be based on transparency or it ceases to be science. My view is that it is not necessarily a bad thing if doctors are paid for their time and expertise working outwith the NHS. For example, working for NICE, or giving expert views to court. However, when a doctor has a financial “conflict of interest”, this can affect the treatment decisions they make, or recommend. These conflicts cannot be entirely avoided, and in many cases they are entirely reasonable. However, it is important that information is available on which companies have paid a doctor, so that colleagues and patients can decide for themselves what they think. For example, there is longstanding evidence that exposure to industry promotional activity can lead to doctors recommending worse treatments for patients.
I have also discussed with Dr Christmas the view that proportionality of understanding should come in words as well as numbers and that the quantitative and qualitative require ‘parity of esteem’.
In summary, I thought the Cross party meeting on Mental Health, Ageing and Older People was an excellent opportunity for a range of voices to share their thoughts and experiences. Such involvement is to be commended and I hope that both my profession and policy makers of all sorts may agree.
Dr Peter J. Gordon
(writing in my own time)
GMC registration: 3468861 Member of the Royal College of Psychiatrists: number 12351 I have worked in NHS Scotland for over 25 years and I am employed with NHS Lothian as a Consultant in Psychiatry for Older Adults. As well as being a doctor and scientist, I am a philosopher, ethicist, and artist.
‘May it be granted the older you are’
Prepared to share with the Cross Party Group on Older People, Age and Ageing ahead of the meeting on the 26th April 2017
In this summary I will present original articles, reports and writing. I wish to keep my words spare.
William H. Thomas said this in 2004 in his book “What are Old People For?”:
On the 1724 ruin of Mavisbank (considered as Scotland’s finest ruined building) and carved on the sculpture “The Ageing Stone” by Dr Peter J. Gordon:
May you grow old either never or late,
and that you experience earthly changes late.
May what the numerous ages erode be restored intact,
may it be granted that the older you are,
the more beautiful you may shine.
[Dr Peter J Gordon was formerly a Trustee of Mavisbank House, Loanhead, Edinburgh.]
Ballatt and Campling in their acclaimed book (2011) “Intelligent Kindness” offered this concern about current approaches to healthcare:
I have argued in a number of publications that prevailing approaches in medicine, and particularly a primary focus on biomedicine may risk this outcome for our older generation:
The Scottish Government and Alzheimer Scotland had this recent four-page spread in a National newspaper:
The Scottish Government has indeed made progress with dementia care but we should be wary of repeated statements made by them that this is “world leading”.
Barak Obama, when President of the United States, said:
Scotland is a relatively small country and this may be one reason why biomedical determinism has prevailed without challenge. This approach to mental wellbeing has its place. I have reasoned in a number of publications, that unless philosophy is irrelevant, then biomedicine should not be the only determinant to wellbeing.
Owen Jones, in his 2014 book “The Establishment” insisted:
Personally I have very much valued the views and writings of individuals like Mr Hunter Watson and Mrs Chrys Muirhead. It disappoints me to have witnessed the ways that those in genuine positions of power have sometimes treated them. Simply because their views may not be shared.
Prescribing of psychotropic medications (of all types) has been rising year-on-year in Scotland for the last decade (ISD figures, Scottish Government). Rising in all age groups: including our children and our older generation. Reporting on this on the 5th October 2016, The Scotsman had as its front-page headline “Prescriptions for mental health drugs at 10-year high”.
Annette Leibing in an Editorial in Cult Med Psychiatry explored the origins of the widely used label/acronym “BPSD”:
One of the consequences of this has been the very wide practice of prescribing ‘off-label’ of antipsychotics in Scotland to those living with dementia. Unfortunately this wide practice has always lacked evidence for the “appropriateness” of such prescribing:
Promotion of “off-label” use of drugs is still widespread practice in the UK and, if anything, has become more embedded since the introduction of GMC required ‘Continuing Medical Education’ (CME):
The above was the concern of the Royal College of psychiatrists in 2005 (twelve years ago). However the Royal College of Psychiatrists has stated recently that this is “now a thing of the past” and that psychiatry is “puritanical” in its relationship with the pharmaceutical industry. Unfortunately real-world evidence does not support this statement (see the wide-ranging evidence gathered for ‘A Sunshine Act for Scotland’ )
Dr Catherine Calderwood, Scotland’s Chief Medical Officer is to be commended for her initiative Realistic Medicine. I have presented the reasons to the Scottish Government why a Sunshine Act for Scotland must be a necessary part of this.
[For instance: If we had a Sunshine Act perhaps the MESH scandal and so much harm might have been avoided.]
Dr Margaret McCartney, Glasgow GP, author, BMJ columnist has outlined the harmful consequences of Industry being in the driving seat. One aspect of this is ‘inverse care’. More than two years on since Dr McCartney wrote this and we find that no NHS Board area in Scotland is achieving more than 54% of the “guaranteed” Post-Diagnostic Support:
More than two years ago this “Change Paper” was published in the British Medical Journal. Professor Burns is the National Clinical Director for Dementia in NHS England and Wales:
In response, I submitted this published rapid-response to the British Medical Journal:
I welcome this “change page”.  The authors describe the routine prescription, off-label, of antipsychotics to our most vulnerable elderly. At a recent international conference one presentation referred to the estimate that “2/3rds of current UK prescriptions for antipsychotics in people with dementia are inappropriate”. These reports remind us that those living with dementia are often considered to lack “capacity” and their voice is easily lost. My previous correspondence to the BMJ has demonstrated my view that our profession should not be “educated” by commerce or industry.  In 1999, as a doctor in training, I was handed a document by my trainer. This I was told was “the way forward”. The document had an acronym: “BPSD”. I had not heard of “BPSD”. I learned that this acronym stood for “Behavioural and Psychological Symptoms in Dementia”.I accepted it with little thought. The comprehensive BPSD document was produced by Pharma: though at the time, and for almost a decade thereafter, I was not aware of this fact. I am aware that a number of NHS guidelines are in existence for the treatment of “BPSD”.  Haloperidol, in lowest possible dose, is generally the drug recommended. My concerns over prescribing of antipsychotic drugs like Haloperidol in a frail elderly population, led me to raise a petition for a “Sunshine Act” with the Scottish Government.  It has been my experience that marketing activity by the pharmaceutical industry, and also “education” by key opinion leaders paid for by the pharmaceutical industry, have in the past encouraged the off-label use of antipsychotic drugs. Until we acknowledge this mechanism, we risk losing the opportunity to minimise the harm of such an approach. References 1-5
Four months later this research was published:
It should be noted that antipsychotics also can cause side-effects (morbidity) as well as increasing risk of mortality. Such side effects include: parkinsonism, sedation, mental dulling, excess salivation, weight gain, cardiac disturbances and hormonal dysregulation. This is why, as an NHS doctor for older adults, I use antipsychotics as sparingly as I can and generally when all other options have reasonably been tried. If I do prescribe antipsychotics I try to do so for as short a period as possible.
The SIGN 86 “National Clinical Guideline” on “Management of patients with Dementia” was published in 2006. A review of national guidelines on dementia, published in 2013, established that this was found to be almost the worst national guideline for dementia in the world (certainly in terms of consideration of ethics)
I have written about my concerns that financially vested interests may have played a significant part in the development of SIGN Guideline 86 on Dementia:
Last year Sign 86 Guideline was withdrawn. There has been no replacement – despite the promise made within SIGN 86 – to have it reconsidered by 2011.
The following slides consider failures of governance for National Guidelines such as SIGN:
One of my interests is in ethics. I share the ethicists’ view that we all may suffer if our shared determination scientific objectivity is compromised for vested reasons. It was this consideration that led me (in 2013) to petition the Scottish Parliament to consider introducing a Sunshine Act for Scotland:
My petition was closed in February 2016 after wide gathering of evidence and a Public Consultation.
The public consultation revealed that the Scottish public support the petition and that in majority they would like to see all payments made to doctors, healthcare workers and academics to be publically declared on an open, central register.
More than a year on since this consultation was concluded and the public has had no meaningful update from the Scottish Government.
In the Observer newspaper of 1st October 2016 an Editorial our older generation ended:
I also want to end by celebrating the real value of our older generations.
This was a rapid response to the British Medical Journal by myself that was published 2nd September 2015
The contributions of those “retired” often prove invaluable: Yesterday I was at a consultation event held by Healthcare Improvement Scotland which sought wider views on a proposed national approach to “Scrutiny” of health and social care in Scotland (1). At the meeting I met a number of individuals who had been designated “retired” on their name badge. I was not surprised to find that during the course of the consultation event, the contributions of those “retired” proved to be invaluable. Returning home on the train I thought about this a little more. Names like J K Anand, L Sam Lewis and Susanne Stevens, all regular submitters to the BMJ rapid responses came into my mind. All describe themselves as “retired” and one happily calls himself “an old man”. The contributions by retired folk have always struck me as having a different quality to those by people who are still employees of today’s NHS. In “retirement” there may be a greater freedom to ask questions of prevailing approaches. Our older generation also has great experience which should be considered as “evidence” in itself. Yet in my job as a doctor for older adults, I see the world around me as seeming to do its best to reduce our elders. The language used in discussing our elders commonly denotes some sort of loss. For example the “guru” of Healthcare Improvement Don Berwick talks about the “Silver Tsunami”. Other healthcare leaders talk of “epidemics” and “challenges”, implying that our elders are a burden to younger generations. To address these “challenges” the healthcare improvers, it seems to me, are devising shortcuts. Today these are often termed “tools” and may be part of “toolkits”. I have even heard healthcare improvers discussing the need to “invent” a “tool” for patient centredness. I think our elders, or those “retired”, might consider this to be particularly ridiculous. So I would like to say three cheers for the “retired” folk. To discourse they bring wisdom, to the prevailing methodologies they are more willing to ask critical questions, and when it comes to cutting through to what matters, being true to oneself, our elders are superior to many, if not most, policy makers. References 1 and 2
Mr Hunter Watson also submitted a paper ahead of the Cross Party Meeting on Mental Health and Older People, Age and Ageing. It is included below:
In the report entitled “Remember, I’m still me” psychoactive medication is described as “medicines used to treat behavioural symptoms, like agitation, verbal and physical aggression, wandering and not sleeping”. From this description it seems clear that psychoactive medication is regarded by some as medication which can be used as chemical restraint rather than for the purpose for which it was developed.
That report, which was published in April 2009, was based upon what was found when the Care Commission and the Mental Welfare Commission made joint visits to a sample of 30 care homes in Scotland. The authors observed that “While we saw some examples of good practice, our findings reveal that overall, care in Scotland’s care homes needs to improve significantly in order to meet the needs of people with dementia who live in them”.
The report also noted that “Although most staff were aware of different types of therapies recommended for caring for people with dementia, they told us they were not using them or encouraging them to be used as they did not feel their knowledge was sufficient and they did not have enough time.”
In May 2014 there was published a report entitled “Dignity and respect: dementia continuing care visits”. This report was based upon what the Mental Welfare Commission found when it visited 52 NHS units providing longer-term care for people with dementia. Among its findings were the following:
84% of people were on at least one psychotropic medication (i.e. psychoactive medication) with 30% on three or more, in many cases without evidence of regular reviews 175 people (52%) were taking anxiolytic medication, mainly Diazepam or Lorazepam, with 65 of the 175 (37%) receiving this on a regular basis. This level of use is disturbing and is much higher than the level of use we found in Remember, I'm still me where only 19% of people with dementia in care homes were prescribed anxiolytic medication. The British National Formularly (BNF) states "Anxiolytic medication should be limited to the lowest possible dose for the shortest possible time". 166 people (45%) were taking antipsychotic medication. While this may be helpful in relieving symptoms such as hallucinations, delusions, agitation or aggression, there are known risks for people with dementia. All antipsychotic medications increase the risk of stroke and death, many can impair mobility and increase the risk of falls. Although people with dementia in NHS care may present with more challenging and complex problems than people with dementia in other care settings, staff skills and knowledge and staff numbers should be better. We were concerned at the high usage of antipsychotic medication often in combination with anxiolytics or sedative antidepressants.
In October 2016 there was issued a National Statistics Publication for Scotland entitled “Medicines used in Mental Health”. It provided statistics for the years 2005/06 to 2015/16. Among the facts contained therein are the following:
All NHS Boards show increased prescribing of antipsychotic drugs since 2009/10. The total number of prescription items dispensed for psychoses and related disorders increased between 2014/15 and 2015/16 ... This follows a gradual increase over the last ten years. The majority of the drugs used in the treatment of psychoses and related disorders are antipsychotic drugs.
In June 2010 there was published a document entitled “Scotland’s National Dementia Strategy”. This document made clear that the Scottish Government was committed to “ensuring that people receiving care in all settings get access to treatment and support that is appropriate with a particular focus on reducing the inappropriate use of psychoactive medication …”
In May 2013 there was published a document entitled “Scotland’s National Dementia Strategy: 2013 – 16”. In this document it was stated that “The first Dementia Strategy identified that a key driver to ensure care and treatment is always safe, effective and appropriate is working with partners to reduce the inappropriate prescribing of psychoactive medication for people with dementia”. In order to try to achieve this goal an expert working group was asked “To agree and recommend a national commitment on the prescribing of psychoactive medications (excluding cognitive enhancers), as part of ensuring that such medication is used only where there must be a likelihood of benefit to the person with dementia and where there is no appropriate alternative”.
In a 1998 edition of the International Journal of Geriatric Psychiatry (No 13) there appeared an article entitled “Medication Use in Nursing Homes for Elderly People”. In the summary it was stated “Residents of nursing and residential homes are often prescribed medication for physical and mental ill-health with resultant polypharmacy and the possibility of iatrogenic disorders. (Disorders caused by medication.) Sometimes drugs are prescribed inappropriately and a number of studies have highlighted the overuse of psychotropic drugs. Legislation in the USA has been effective in controlling their use in that neuroleptic prescriptions (i.e. antipsychotic prescriptions) for the treatment of behavioural disturbances have been significantly reduced and non-pharmacological strategies aimed at ameliorating behavioural disturbances have been proposed.”
In the editorial of the BMJ of 1 April 2006 it was stated, with reference to an article entitled “Managing challenging behaviour in dementia”, that “… the behaviour of staff … may play a central role in the manifestation of challenging behaviours in patients … a new culture of dementia care should focus on meeting individual patient’s needs rather than on restraint.”
On 3 June 2011 I was sent from the USA a copy of an article entitled “The wrong drugs in nursing homes. Too many antipsychotics” The article was written by Daniel Levinson, the inspector general in the Department of Health and Human Services. Within that article it is stated that “Researchers found that 88 percent of the time, these drugs (antipsychotics) were prescribed for elderly people with dementia. This is precisely the population that faces an increased risk of death when using this class of drugs, according to the FDA.The report didn’t investigate why patients with dementia are prescribed antipsychotic drugs so often. But a series of lawsuits and settlements that my office helped to bring about suggests that many pharmaceutical companies have improperly promoted these drugs to doctors and nursing homes for many years.”
Observations and recommendations: The production of dementia strategies has been ineffective in reducing the prescribing of life-threatening antipsychotic drugs to people with dementia in care homes and hospitals. The Scottish Government should, therefore, agree that, as recommended by the Mental Welfare Commission, there be a wide review of mental health and incapacity legislation when the place of learning disability and autism in current mental health legislation is reviewed. When carrying out that review full account should be taken of the Convention on the Rights of Persons with Disabilities. Guidelines should be produced for the use of antipsychotics and otherpsychoactive drugs for people with dementia. These guidelines should take full account of the recommendations in the British National Formularly. Note should be taken of the fact that the guidelines in SIGN 86 have now been withdrawn since they became out of date. New National Care Standards for Care Homes for Older People should be produced. These new standards should not suggest that medication could be used as restraint in response to "restless or agitated behaviour" as do the existing care standards. This suggestion positively encourages care home staff to request that a doctor prescribes an antipsychotic for a resident whose behaviour is perceived as challenging. Unfortunately some doctors are too ready to accede to such a request and do not properly consider whether the known risks outweigh the potential benefits nor attempt to obtain the informed consent of the patient. There seems to be an incorrect assumption by some that care home residents, especially those with dementia, would be incapable of passing the recognised test of capacity to make a treatment decision. New regulations should specify that doctors must take due account of prescribing guidelines when they prescribe antipsychotics to care home residents and also that they must give a written explanation of any decision to do this. The care inspectorate should confirm that due account has been taken of prescribing guidelines and also that acceptable written explanations have been provided. The regulations should specify sanctions which could be taken against care homes in which there has been evidence of an excessive and inappropriate use of antipsychotics or other psychoactive drugs It should be recognised that in Scotland, as in the USA, pharmaceutical companies could have been improperly making payments when marketing their psychoactive drugs as suitable for use in the treatment of care home residents and others. The Scottish Government, therefore, should make it mandatory for doctors, healthcare workers and academics to disclose publicly all payments from the pharmaceutical industry. Peter Gordon, a consultant in old age psychiatry, submitted petition PE1493 to the Petitions Committee in the hope that it would lead to the Scottish Government agreeing to enact the necessary legislation which he suggested could be named the Sunshine Act. However, in an email dated 14 April 2017 sent to the Minister for Mental Health and others he stated "A year on and there has been no meaningful public update from the Scottish Government on PE1493 and a Sunshine Act". The Scottish Government should give serious consideration to Peter Gordon's proposal. Caring for elderly people with dementia is a demanding task but the care homes which have the responsibility for their care are commonly under-staffed and under-funded. Such homes are unable to pay staff sufficient to ensure that they do not leave for better paid and less demanding work elsewhere, such as in a supermarket. The consequence is that in some care homes there is a high turnover and hence a lack of properly trained staff. In these circumstances it is not surprising that care homes resort to the use of psychoactive medication when residents present problems. It should be recognised that in order to ensure that people with dementia are properly cared for more resources must be devoted to social care and that, if necessary, taxes should be raised to achieve this.