[A comment on ‘Facing your doubter head on . . .’ a blog by Wendy Mitchell]
Dr Peter J Gordon, 19 July 2022
Thank you Wendy for sharing your experience of a virtual conversation with Professor Rob Howard, Consultant Psychiatrist. I recall reading his recent description of your diagnosis of dementia as a “portrayal” of a “jarringly false narrative”. He did so on a social media platform open to all, including his 10,000 followers, many of whom are likely to be fellow psychiatrists and mental health professionals. I also recall that Professor Rob Howard had as part of his Twitter bio that he challenged “Munchausen’s portrayals of dementia”. The language used by professionals matters and in this response I wish to offer some thoughts on why this applies just as much, perhaps more, in the digital space as in the clinic.
It is concerning to read from your blog [‘Facing your doubter head on . . .’] that this emphatic challenge to your diagnosis – using words such as “jarringly” and “false”- was made by a senior medical professional who has never met you, let alone been any part of the medical team involved in your detailed clinical assessment.
These are our household dictionary’s definitions of ‘jarring’ and ‘false’:
Like you Wendy, I have never met Professor Rob Howard but was aware of him following his decoration by the Royal College of Psychiatrists with a Lifetime Achievement Award. I was also an NHS psychiatrist until I retired several years ago. As a consultant I was part of a specialist team involved in the assessment of cognition including all dementia syndromes. For reminding Members of the Royal College of Psychiatrists of the Core values for psychiatrists [Dignity, Empathy, Fairness, Honesty, Humility, Respect and Trust] I have also been a target of his discrediting language on social media [to which I cannot reply as I choose not to be part of Twitter]. However, in the spirit of constructive shared learning I would like to share considerations on why language matters in science and professional discourse. As the time-honoured discipline of ethics reveals, it is possible to hold one’s views [freedom of speech] whilst retaining the core values outlined by the Royal College of Psychiatrists.
For the last decade of my working career as an NHS psychiatrist I advocated for a timely approach to the diagnosis of dementia, as based on scientific and ethical standards. A timely approach to diagnosis includes an appreciation of scientific uncertainties including the pathological changes behind the various dementia syndromes. I advocated this approach as it included considerations of potential harms as well as potential benefits. At the time I was advocating for this approach “early diagnosis” was “everywhere” which was incentivised through national targets and political initiatives that came to be termed “cash for dementia”.
Wendy, I need to stress that the history that follows is mine and is shared only to try and help explore the complexities involved. I also need to stress that most of my patients were elderly. In no way is what follows directly applicable to you, Indeed, how could I assess someone I have never met.
My view is that the experience of every individual matters and that no professional, however learned, can truly know this. Such subjective experience is the basis of life. If this is devalued, we devalue life.
Another reason that I share this backdrop is that you shared this quote by Prof Howard from your recent conversation: “[that we] don’t fit the pathology of someone with dementia”. Here, given the background history that I have shared, Prof Howard seems to contradict himself.
Nearly a decade ago, my wife and I [my wife is a GP], had the following letter: ‘Confusion is everywhere’ published in the BMJ [it was one of a series of letters that I had published in the BMJ in relation to the diagnosis of dementia]:
The full text for this letter, is as follows:
Confusion abounds. The recent BMJ discussion about screening for dementia highlighted that it is incorrect and potentially stigmatising to consider such confusion as the preserve of the older generation.1
For example, our elders might highlight:
- General confusion: The general population increasingly uses the word “Alzheimer’s” instead of “dementia.” This is hardly surprising when you consider:
- Professional confusion: National Institute for Health and Clinical Excellence and Scottish Intercollegiate Guidelines Network guidelines for dementia contain definitions of dementia and Alzheimer’s disease, yet the terms are used interchangeably in the body of the guidelines.2 3
- Confused “education”: Much postgraduate medical education is funded by the drug industry, which also funds “awareness raising” by charities and lobbies politicians. We are certainly confused about where the line lies between these activities and “marketing.”4
- Confusion between research and clinical agendas: Advances in research are often extrapolated prematurely into a general clinical setting by well-intentioned clinicians who may also be responding to the clamour of the latest press release.5
- Confusion about risk: The communication of risk is fundamental to medical practice but is undoubtedly difficult. Every intervention has potential for benefit and for harm. We are so keen to see the benefits that we sometimes forget to look for the harms.6
The dictionary definition of confusion is: “a feeling that you do not understand something or cannot decide what to do.” We must resist the temptation to respond to confusion with oversimplification and instead find a way to acknowledge complexity.
In 2015, this letter ‘Undiagnosing’ dementia, by myself was published in the BMJ:
The full text for this letter, is as follows:
Brunet raises the difficult subject of “undiagnosis.”1
Scotland, long before England, had a financially incentivised target for “early diagnosis” of dementia. This was HEAT target 4, which was set for all 12 NHS boards deployed at secondary rather than primary care level.2
The Scottish government, having reached this target, has not shied away from stating that it did “quite well” in reaching the target.3
As a specialist doctor in dementia I am now facing the return of elderly people who were diagnosed with “early Alzheimer’s disease,” but who many years on show no signs of dementia (they do not fulfil clinical diagnostic criteria for dementia and have shown no signs of progression).
These people thought that they had dementia or “Alzheimer’s.” Some have lived with this for seven years or more. They have generally had post-diagnostic counselling, and families and friends have also adapted to the diagnosis. Driving, autonomy, and insurance may all have been affected.
In many cases this was the direct result of an approach based on “early diagnosis” set as an incentivised target.
If we must have a target based approach (which I very much doubt), ethics must be considered from the outset.
Despite uncertainty about the pathology that leads to dementia, those in power: academics, medical professionals and charities, backed by big business and [what was] unwavering political support, chose to drive forward an approach to diagnosis incentivised by national targets. The language behind all of this was simplified, such that complexity and uncertainty were squeezed out. Interestingly, today, the very academics who were key to implementing and driving forward this narrative, such as Professor Rob Howard, have come to a consensus that the “pathological cascade” [deposition of amyloid and tau proteins in the brain – that has long been the dominant theory] has turned out to be a gross simplification of the biological changes in brains that leads to dementia.
A very senior British medic and thought leader, who is a ‘heavy user’ of social media has described Twitter as “all Disco”. This should never be the place to re-diagnose patients that you have never met and are not professionally responsible for.
It is my view that the advent of social media has created a new environment where health professionals are at risk of increasing rather than reducing stigma. The balance of power between psychiatrists and patients has always been unequal because of the legal authority to detain. This imbalance also includes the application of diagnostic categories to others. It is disappointing to see any misuse of this power, for this will only perpetuate stigma. It is a real challenge for the Royal College of Psychiatrists to ensure that the values that the organisation has set out are followed by its members in all settings, including social media.
Professor Rob Howard has also openly challenged, on Twitter, the suffering of some patients diagnosed with dementia, and has done so using the word “portrayal” [the definition of this word refers to acting a part]. In a recent BMJ Analysis, it is argued that “medical language that casts doubt, belittles, or blames patients jeopardises the therapeutic relationship and is overdue for change”.
Language matters.
John Brockman in his collection of scientific essays ‘Beyond the scientific revolution: The Third Culture’ insisted that the role of the academic includes communicating. Another way of putting what seems a most obvious truth is that: language matters. Brockman shared in outlook the following philosophy of Mary Midgley: “We can eventually make quite a lot of sense of this habitat if we patiently put together the data from different angles. But if we insist that our own window is the only one worth looking through, we shall not get very far.”
Language matters to science. Words are our best way of sharing experience. Numbers [the primary basis of scientific method] are derived from descriptors [i.e. words]. At each stage of the process – from experience, to words, to numbers – there is a loss of the lived reality. If academics, scientists and doctors choose to limit learning from lived experience then scientific conclusions will lack real-world validity and harm will almost certainly result [as repeated inquiries have demonstrated].
It thus behoves academics, scientists and doctors to use language with care. To use it in a way that is openly respectful of experience. Professionals, as the Cumberlege Report makes clear, need to be aware of institutional defensiveness in which hubris can thrive. We are all learning from history and there needs to be greater candour about this.
A decade ago I had a paper published on iatrogenic stigma [Window Tax]. I concluded with this hope: “If psychiatry can overcome its fears and truly tackle all the heads of stigma, most particularly by truly listening to its patients, it can only be to the benefit of the profession and patients alike.”