Early detection: “We need critical thinking”

The following analysis: “Surge in publications on early detection” was recently published in the BMJ. The authors concluded that “we need more critical thinking and more studies that specifically target both benefits and harms of early detection”:

The authors of this analysis will no doubt welcome the following response as a good example of critical thinking. This reply was submitted by Robert Steele (Independent Chair of the UK National Screening Committee); Anne Mackie (Director of Screening, Public Health England); John Marshall and Zeenat Mauthoor (both PHE Screening)

Submissions such as this reinforce my view that the criteria and principles that apply to screening must also be applied to early detection and “case finding”.

‘Informed consent is a fundamental principle underlying all healthcare’

A recent Independent Review for NHS Scotland stated that: “Informed consent is a fundamental principle underlying all healthcare”

The Cabinet Secretary for Health and Sport, Shona Robison stated to the Scottish Parliament (17 March 2017): “Informed consent and shared decision making are expected prior to any procedure being carried out.”

On the 20th April 2017, I wrote to Healthcare Improvement Scotland 
about Patient consent in NHS Scotland:

I have just completed my annual Appraisal which is a General Medical Council requirement as part of 5 yearly Revalidation. As part of this I was informed by my Appraiser that I must comply with all the LearnPro modules which I have now done.

The following screenshot comes from the NHS Lothian mandatory LearnPro module on Capacity and Consent:

I apologise as the text is small, so I have reproduced verbatim what it states to me as an NHS Lothian employee:

“Consent is both a legal requirement and an ethical principle and requires to be obtained by healthcare professionals, prior to the start of any examination, treatment, therapy or episode of care.”

“In Scotland, everyone over the age of 16 is an adult. The law assumes that adults can make their own decisions and can sign legal documents, such as consent to medical treatment (in some circumstances this also can apply to children under the age of 16) provided they have the capacity. This means that they are able to understand what is involved in the proposed treatment, retain the information, be able to weigh up the information needed to make the decision and then communicate that decision. Treatment might be delivered in a hospital, clinic or in someone’s home.”

In years past I have written about consent for older adults in hospital in NHS Scotland:

Do we care enough about consent?

‘OPAC tools are working’

I am writing to Healthcare Improvement Scotland as I find myself confused.

Do I follow the mandatory requirements of my employers on consent? Or do I follow the National Improvement requirements of OPAC-HIS where consent is not required for assessments such as the 4AT assessment test? (formerly called “4AT screening tool”)

I know, from the re-drafted Care Standards, that Healthcare Improvement Scotland take consent very seriously.

I should state that I am writing in my own capacity and in my own time.

12 May 2017 - I sent this update to Healthcare Improvement Scotland:

Forgive me for this further correspondence but I felt that I should update you on the learning that I received as part of my attendance for Continuing Medical Education (CME) yesterday.

This CME event was for the Royal College of Psychiatrists in Scotland – Faculty of Old Age Psychiatry and was held in Falkirk.

At this event the Chair of Old Age Psychiatry for the Royal College of Psychiatry was giving a talk and when the time came for questions I asked about the wide use of haloperidol in older adults in hospitals in NHS Scotland. Dr Thompsell replied “evidence has found that Haloperidol actually worsens the outcome of delirium”.

Another lecturer at this meeting, who was giving a talk on her area of expertise: anti-psychotics and older adults, was Dr Suzanne Reeve. She replied: “Haloperidol does increase mortality in older people compared with other antipsychotics. That message has been out for a while but has not really got across.”

The next talk was entitled “Successes of Old Age Psychiatry Liaison team” and one of the slides shown had the headline “Compliance with 4AT”. The impressive “compliance” figures then followed. The dictionary definition of compliance is “the act of yielding”.

My concern here is for patient harm and indeed increased patient mortality. National Improvement work undertaken by HIS has been instrumental in increasing “compliance” with tools such as the 4AT and it is clear that no consent is deemed necessary. I have argued that this is not ethical as these tools are often the beginning of “pathways” and “protocols” that may result in the administration of haloperidol.

I am genuinely worried that National Improvement work undertaken by Healthcare Improvement Scotland has not properly considered ethics, available evidence and the potential for unforeseen consequences. You will understand that I am also nervous about writing this letter given the consequences for me when I first “spoke up” three years ago:

I would very much value your advice. I am not sure that I can work in a profession if it loses sight of Hippocrates and “first do no harm”.

This is the response from Healthcare Improvement Scotland,
dated 17th May 2017:

“Thank you for your letter of the 20th April and your letter of 12th May, in which you raise the interesting issue of taking consent in relation to cognitive screening.

I understand from staff involved in the inspections of older people’s care in hospital that taking of written consent prior to initial assessment for frailty is not routinely undertaken. Assessment at the point of admission, or where a change in a patient’s cognitive presentation is giving cause for concern, can alert staff to possible increased risk and enables planning of care for the patient. In these circumstances staff adopt a proportionate approach such as asking, for example, if they may ask some questions.

For absolute clarity though, as an employee of NHS Lothian, the requirements set out in the Board’s policies and mandatory training are those that you should follow.”

 

May it be granted the older you are

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”. [1]

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”.[2] 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. 
[3]

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”. [4] 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. [5]

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 86National 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.

‘Have you ever noticed that certain days are injury days?’

I was filming in our garden today as the sky was beautiful, the spring bulbs colourful, and the green as fresh as can be.

By chance, an NHS Forth Valley lorry passed in front of the camera. My heart missed a beat. The lorry was advertising the Minor Injuries Unit.

Three years have nearly passed since I resigned from NHS Forth Valley. When an employee with NHS Forth Valley I championed an ethical and evidenced-based approach to the diagnosis of dementia and for transparency in terms of financial interests of staff.

As a consequence of this, I myself left NHS Forth Valley with injuries. Not physical injuries but just as real.

Looking back, I am proud to have tried my wee best to put ethics at the very heart of my practice. To stand up for those who may not be as able or who may feel frightened to stand up for themselves.

The title of this film comes from the novel “Vinegar Girl” by Anne Tyler

The music is by Steven Lindsay – “Exit Music”

Courage to care













 

Prescribed Disengagement

A friend of mine (a colleague) recently asked me to “explain” disempowerment.

Another dear friend of mine (diagnosed with dementia) has written about: “Prescribed Disengagement”.

It has struck me that: a very fine colleague, and a very fine friend, represent today a wide spectrum of understanding.

Kate's-poetry

My view is that few have written better about this matter than Kate Swaffer. Along with Richard Taylor, Kate has been a pioneering and brave voice amidst a prevailing world of “understanding”.

Kate Swaffer visited Scotland this summer and kindly took great trouble (Kate and her husband Peter had to rearrange their travel plans) to meet with me in Bridge of Allan.

I am not one for accolades, triumphalism, or plinths, but for me Kate deserves all.

Kate is a pioneer of sense. In a world where we constantly hear a load of nonsense about dementia.Kate Swaffer visits Mossgrove 30 June 2015

Director General for NHS Scotland

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:

Paul Gray 02

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.

Paul Gray, PAG1962, Year of Listening, NHS Scotland

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 dghsc@gov.scot 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):

paul-gray-director-general-chief-executive-1-july-2016

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:

Whistleblowing in NHS Scotland from omphalos on Vimeo.

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:

paul-gray-nhs-scotland-scottish-government-1

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”:

deputy-director-to-director-of-nhs-scotland-hes-another-of-our-regular-correspondents

This report in the National describes the Director General’s approach to whistleblowing, an approach that would seem to address only selected recommendations of Sir Robert Francis:

No if yer a whistleblower it's no

all-nhs-workers-should-have-the-confidence-to-speak-up-without-fear-pag1962-paul-gray-chief-executiveThe above interview was published in the Herald on the 26th September 2016.

nhs-staff-too-scared-to-speak-out-paul-gray-chief-executive-pag1962

first-steps-towards-a-more-open-nhs-scotland-paul-gray-herald-chief-executive

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”.

from-the-director-general-nhs-scotland-15-aug-2016

“Truly be all you can, and not what the ‘experts’ tell you to be”

This post is for Richard Taylor who died on the 25th July 2015.

I am not aware of any other who has done more to challenge the mythologies and stigmas of “Alzheimers” than Richard Taylor.

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I dedicate my film Primum Non Forgetful to Richard.

Primum non forgetful from omphalos on Vimeo.

Richard’s last line: “Truly be all you can, and not what the ‘experts’ tell you to be.”

001Richard Taylor

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