My 13th book will be ‘Principles of Neurology’. Lucky for some.

1. Target Audience

Who are you writing this book for? 

Courses where the book might be considered ‘recommended reading’:

Courses for the Bachelor of Medicine/Bachelor of Surgery undergraduate medicine.

Physician Associates training is set out in careers advice (https://www.prospects.ac.uk/job-profiles/physician-associate).

Also especially nurses.

All AHPs including social workers with an interest in brain disorders, dietiticians, physios and OTs.

Pre-qualification and newly qualified especially.

Medicine is fundamentally multi-disciplinary and inter-professional now. Neurology is no exception. It would therefore be wise, in my opinion, to be forward-thinking, and to be considerate about the needs of the wider workforce who interact with neurological patients. This includes allied health professionals, especially nurses, physios and OTs, and physician associates. Any book which is written for juniors must reflect the end point of training. This means that such a book should be factually accurate and reflect current practise and guidelines which a reasonable consultant in neurology would be expected to know.

2. Rationale

I intend this book to be a quick to read ‘one stop shop’ for reading about the range of neurology for pre-qualification or ‘only just qualified’.

There are many new developments, such as headache, genetics, drugs, which have rapidly been adopted in the last few years, which would be missing from most if not all books currently available.

The new curriculum for neurology is being introduced next year, so this is the perfect time to introduce a text for medical students who one day will be trainees of the future. Feedback from a current NHS consultant in adult medicine in London said it was a lot of work to re-educate bad or out-of-date teaching in medical school, and it would be much more preferable for students to learn state-of-the-art material in the first place.

The new neurology curriculum for junior doctors comes into effect from 2021, and the current neurology curriculum for junior doctors is still very much active. I should therefore prefer a prompt publication of this book.

3. Contents

The book will be structured to reflect reliably the weightings of the current modern neurology curriculum.

The curriculum is clearly set out by the Joint Royal Colleges of Physicians Training Board (draft for consultation 2021 https://www.jrcptb.org.uk/sites/default/files/DRAFT%20Neurology%20Curriculum%202021%20250221.pdf and current version 2010 https://www.gmc-uk.org/-/media/documents/Neurology_Curriculum_FINAL_301110_V0.19.pdf_40512716.pdf).

The blueprint for the weighting of the higher specialist assessment of neurology is currently available here, https://www.mrcpuk.org/sites/default/files/documents/sce-neurology-blueprint%20.pdf, based on the JRCPTB curriculum loosely from 2010 to be updated, https://www.gmc-uk.org/-/media/documents/Neurology_Curriculum_FINAL_301110_V0.19.pdf_40512716.pdf.

List of contents (last column gives calculated number of book chapter)

Some of the blueprint headings have been given ‘punchier’ titles.

Bl* indicates weighting of the blueprint out of 200 questions – the corresponding number of pages for each book chapter can be calculated from this, assuming a book of length 70,000 words.

	Chapter title	Bl*	Book
1	Stroke	15	5250
2	Disorders of consciousness and epilepsy	20	7000
3	Cranial nerves and visual system	10	3500
4	Peripheral nervous system and muscle	15	5250
5	Spinal cord and motor neurone disease	10	3500
6	Neurological specialties	20	7000
7	Neuro-inflammation	20	7000
8	Neurology in special groups	15	5250
9	Investigations	15	5250
10	Cognition, behaviour and neurorehabilitation	15	5250
11	Neurosurgery and intensive care	15	5250
12	Pain and headache	15	5250
13	Movement disorders	15	5250

Even I didn’t know I had burnout at the time

This is emotionally difficult for me, as I have never told my story.  It’s deeply personal to me, and my life pivots around the burnout I experienced within the NHS. It’s self-reflection for me, and I hope this never happens to you.

 

So here it goes.

 

The health and wellbeing of NHS staff affects patient safety (1). Burnout is a psychological syndrome due to the prolonged response to chronic interpersonal stressors at work. Key symptoms are overwhelming exhaustion, feelings of cynicism, and detachment from the job as well as a sense of ineffectiveness and lack of accomplishment (2). Definitions vary, however, and formal psychiatric classifications are lacking.

 

When I qualified in 2001, I didn’t really know what burnout was. I thought it was something which happened to other people. In 2002, with high hopes, I moved to London from Cambridge to do my ‘SHO jobs’, as they were called then. I looked forward to a change of pace from the rarefied world of academia. I was optimistic. I believed that I had the aptitude to master neurology one day.

 

I was prepared to go “beyond the call of duty” to look after my patients. I had moved to a new flat in a new city. But I had no idea that my new future could mean working ridiculous hours in prestigious teaching hospitals, where many seemed too busy to care about my emotional wellbeing.

 

Neurobiologically, the human brain needs rewards to learn (4), but almost no one gave me positive feedback. I had no friends in London. After my commute home, I’d feel exhausted and alone. These were supposed to be “the best years of my life”. I started having a drink on my own to unwind.

 

I was terrified of making a mistake at work. There was no “learn not blame” culture then, as such. I felt so insecure, with infrequent educational supervision but a constant feeling that I had to be perfect (5). The culture seemed almost to demand a ‘superhuman ability’, but you were not supposed only to admit fallibility, vulnerability, or fatiguability. I felt I had to exude confidence, chutzpah, and bravura (6).

 

In reality, I also had compassion fatigue (a reduced ability to feel sympathy and empathy, exhaustion, anger, and irritability) (7). I remember feeling totally exasperated by the number of patients I had to clerk, to the point of being obsessed by the clock. I may not have actually cared much about the emotionality of people’s life stories. I just wanted the work to be done as fast as possible. I would have preferred colleagues not to have noticed that I had burnout. I felt I had no-one to turn to, in case my underperformance would become ‘official’.

 

I am in no way surprised that depression and burnout are similar phenomenologically and biologically (8): at the time, my mood plummeted. After my fourth SHO job, I didn’t want to apply for another clinical job. I felt hostile, and excluded; I felt that I didn’t want to belong in the “medical club.”

 

Long after finishing my jobs, I started receiving letters from the GMC containing witness statements from colleagues about my poor health and performance. I was even identified in a statement to be a problem drinker, but I had never been advised to see occupational health at that particular time. I waited a few years for a GMC hearing, which eventually came quite publicly in 2006.

 

The GMC erased me from their register, absolutely correctly, but my drinking went through the roof, with no job, no social network, and no future. Even then I refused to admit I was an alcoholic. In 2007, I had a cardiac arrest and was in a coma for a month, and I became physically disabled.

 

When I left hospital, with my new physical disability, I finally admitted defeat, I luckily found a consultant psychiatrist, and I was fortunate to commence sobriety. I retrained to postgraduate level in law and business, and the GMC restored me to the register in 2014. I have been in continuous recovery ever since, and in the care of a GP and psychiatrist I have never looked back. Only this weekend, I was invited to ‘share’ in a Alcoholics Anonymous (AA) group I’ve been a member of. I feel honoured to do so, and I hope it goes ok. I have now not drunk alcohol ever in the last thirteen years.

 

 

Reflections

 

I didn’t actually recognise burnout in myself, so I don’t especially blame senior colleagues for not recognising it either. I realised only recently, after reading Clare Gerada’s columns in The BMJ. My ignorance still shocks me to this day, but it was a great relief that the diagnosis of burnout, in actual fact, explained the enormous, distressing, previously inexplicable symptoms I’d had all these years.

 

Doctors are somewhat expected to portray a healthy image. Combined with unease about adopting the role of patient, this can lead us to take responsibility for our own care even when we are patently unwell. This is extremely dangerous to patients at large, and might result from a genuine lack of insight.

 

Many doctors drink alcohol to cope with the chronic stress from working in demanding  environments (9). Some doctors may not have registered with a GP, for fear that the GMC might learn of health problems such as alcoholism. Such maladaptive coping has significant implications for patient care, individual wellbeing, and the functioning of whole organisations.

 

The GMC’s Duties of a Doctor makes clear, however, that doctors should have their own GP (regulation 30, page 12). It also calls, rightly, for immediate protection of patient safety, which might require disclosure to the regulator about unsafe practice.

 

Burnout inevitably leads to dysfunctional teams. The GMC’s Duties of a Doctor includes a domain on working together. The 2019 GMC report on wellbeing, “Caring for doctors, caring for patients,” argued that central to doctors’ sense of “belonging” is the quality of team working, and the culture and leadership in their teams and organisations (11).

 

While reflecting on burnout, I have found – to my surprise – that I am not actually alone. The statistics are eye watering: one estimate indicates that one in 15 UK doctors may have alcohol or other drug dependency. (Sick Doctors Trust)

 

The US palliative care doctor Adam Hill has written in the New England Journal of Medicine about his own burnout, alcoholism, and recovery: “When mental health conditions come too close to us, we tend to look away — or to look with pity, exclusion, or shame.“ (10)

 

 

Suggestions

 

Happier doctors who support each other are safer doctors (12). In my case, rare supervisions with consultants never touched on my personal wellbeing. Educational supervisors could be trained to recognise symptoms of burnout. Senior doctors are under huge pressure, but still they must find time to care for junior doctors who are struggling, especially if they can find time to write to the GMC.

 

Professionals with burnout should not be “othered” as “problem doctors”, nor indeed “difficult doctors”. A lack of mentoring, coupled with a “blame culture,” often contributes to our difficulties.

 

I do not wish to absolve myself from the recognition that I contributed to my own problems, though. I deeply regret not recognising the symptoms of burnout in myself. If I had known I was in such trouble earlier, I might have been motivated to seek help. It might be a really good idea if, even with a packed medical curriculum, students learn how to seek help, take care of themselves and others, and be kind.

 

Approaching burnout has remarkable similarities to approaching problem drinking. The only person who can help you is yourself – but you can’t do it alone. Ask for help as soon as you can.

 

Things have changed: today the BMA, Health Education England, and the royal colleges are vigorously promoting wellbeing. And I really admire the GMC. It runs programmes on wellbeing and acknowledges head-on that professional behaviour and patient safety are closely linked.

 

But things are far from perfect. Ethnic minority doctors have a higher referral rate to the GMC (14). And radical reform is needed so that regulation complements the wellbeing of doctors working under pressure. This has indeed lobbied for by the BMA.  Regulators such as the GMC and the CQC need better to consider the links between individual problems and dysfunctional or toxic organisations and culture.

 

I really appreciate you listening to me.

 

 

 

References

(1) Wilkinson E. UK NHS staff: stressed, exhausted, burnt out. The Lancet 2015;385:841–2.

(2) Maslach C, Leiter MP. Understanding the burnout experience: recent research and its implications for psychiatry. World Psychiatry. 2016 Jun;15(2):103-11.

(3) Browning L, Ryan CS, Greenberg MS, Rolniak S. Effects of cognitive adaptation on the expectation-burnout  relationship among nurses. J Behav Med. 2006 Apr;29(2):139-50. Epub 2006 Mar 10.

(4) Morita K, Kawaguchi Y. A Dual Role Hypothesis of the Cortico-Basal-Ganglia Pathways: Opponency and Temporal Difference Through Dopamine and Adenosine. Front Neural Circuits. 2019 Jan 7;12:111.

(5) Robertson JJ, Long B. Suffering in Silence: Medical Error and its Impact on Health Care Providers. J Emerg  Med. 2018 Apr;54(4):402-409. doi: 10.1016/j.jemermed.2017.12.001.

(6) Taylor TS, Raynard AL, Lingard L. Perseverance, faith and stoicism: a qualitative study of medical student perspectives on managing fatigue. Med Educ. 2019 Dec;53(12):1221-1229.

(7) Powell SK. Compassion Fatigue. Prof Case Manag. 2020 Mar/Apr;25(2):53-55.

(10) Bianchi R, Schonfeld IS, Laurent E. Burnout-depression overlap: a review. Clin Psychol Rev. 2015 Mar;36:28-41

(8) Montgomery A, Panagopoulou E, Kehoe I, Valkanos E. Connecting organisational culture and quality of care in the hospital: is job burnout the missing link? J Health Organ Manag. 2011;25(1):108-23.

(9) Hill AB. Breaking the Stigma – A Physician’s Perspective on Self-Care and Recovery. N Engl J Med. 2017 Mar 23;376(12):1103-1105.

(11) https://www.gmc-uk.org/-/media/documents/caring-for-doctors-caring-for-patients_pdf-80706341.pdf

(12) Rao S, Ferris TG, Hidrue MK, et al. Physician Burnout, Engagement and Career Satisfaction in a Large Academic Medical Practice. Clin Med Res. 2020;18(1):3-10.

(13) https://www.gmc-uk.org/about/how-we-work/corporate-strategy-plans-and-impact/supporting-a-profession-under-pressure/improving-support-for-doctors-to-raise-and-act-on-concerns/professional-behaviours-and-patient-safety-programme

(14) https://www.gmc-uk.org/about/what-we-do-and-why/data-and-research/research-and-insight-archive/fair-to-refer

 

 

Dr Shibley Rahman

@dr_shibley

Reviews of my synthesis of the evidence on integrated care in dementia (or the dementia pathway)

In 2018, I published my review of the evidence for components of the ‘dementia pathway’. I included ‘caring well’ which had been omitted from the NHS England scheme by name.

32.

Since publishing the book, I have experienced this pathway because my mum has advanced dementia.

My synthesis is here.

The reviews for my book included the following.

‘This is a complex and difficult journey and Dr Rahman’s book is like having an informed, interested, intelligent and profoundly humane friend by your side on the journey through. This book is a friend that is encyclopaedic in knowledge and who is not afraid to have opinions and to express them. We are part-way along the journey, we have come a long way but we have far to go. This book helps us reflect on where we are and the road we have travelled, all the better to plan and travel the road ahead.’
– from the foreword by Sube Banerjee, Professor of Dementia, Brighton and Sussex Medical School

‘Dr Shibley Rahman sets out what is best practice in language and attitude as well as care and support. He writes with great authority and humility about what people who have dementia, and their loved ones, face and how we could all do a great deal more to help them…This is a wonderful book, for students, health professionals, researchers, policy makers, politicians, families, and for people who may be in the early stages of the diseases that cause dementia. This is a book that challenges but also gives hope. Which I think is the greatest gift of all.’
– from the foreword by Lisa Rodrigues CBE, writer, coach and mental health campaigner

‘As a nurse, specialising in the care of people with dementia, and those who care for and support them, this will be a ‘go to’ text; for reference and for revisiting important topics relating to practice…This book is an important milestone in the Dementia Care literature as it provides information to help us answer the difficult questions we face as professionals helping to support people and families.’
– from the Afterword by Lucy Frost, Dementia Lead (Nurse Consultant)

‘The third of Rahman’s books on issues relating to dementia. Another must-read text that discusses the many and varied elements of what is required to enhance the lives and wellbeing of people with dementia. I particularly like his style of telling us what we can expect to learn from each section and suggestions for further reading. This, as well as the first two books from the author, is an essential read for all health and social care students in gaining an overview of caring in dementia’
– Dr Karen Harrison Dening, Head of Research & Evaluation, Dementia UK

‘Shibley Rahman’s last book in his trilogy on dementia represents a comprehensive and thought provoking tour de force through the subject matter – great reading for any health and social care professional, academic and interested lay person. Here is a perspective from an author who in himself integrates academic qualifications in medicine, law and management with a lived experience of disability. A unique read!’
– Reinhard Guss, Chair, Faculty of the Psychology of Older People

‘Practitioners, family carers and people with dementia looking for a comprehensive resource about dementia need look no further. Few books combine detailed explanations about clinical aspects of dementia with policy analysis and yet remain so centred on people’s individual experiences. This is an important resource for anyone who wants to understand more about providing better dementia support.’
– Jo Moriarty, Senior Research Fellow, King’s College London

‘An absolute gem of a book. Through his career, Shibley Rahman has been sequentially academic neurologist, service user, family carer and blogging activist. His learning and wisdom have been distilled into a highly readable, comprehensively referenced and bang up-to-date companion for anyone who needs to learn and understand about people with dementia and what can be done to help them, their families and professional carers to get the very best out of life.’
– Robert Howard, Professor of Old Age Psychiatry, University College London

‘There can be no doubt that Enhancing Health and Wellbeing in Dementia should be essential reading for anyone with an interest in improving the lives, and rights, of people living with dementia. It is an important book which is both comprehensive and practical – no easy matter to achieve! His encyclopaedic span concludes appropriately with the primacy of person-centred approaches, the importance of dignity, quality and leadership – yes, yes, yes!’
– Des Kelly OBE, Chair, The Centre for Policy on Ageing

‘Shibley’s voice has emerged as an important one to take notice of within dementia care. His ability to draw together a huge range of knowledge from many different spheres of research, practice and policy and to use it to light our way rather than confuse us further is unique.’
– Prof Dawn Brooker, Director of the Association for Dementia Studies at the Worcester University, UK

‘This important book continues our journey of what it means to see the person beyond their diagnosis of dementia, with a fresh focus on freedom, dignity and human rights. Dr Shibley challenges the idea that nothing can be done to improve dementia care. He brings practical thinking around how we can move towards truly integrated, person-centred ways of working – making a timely and valuable contribution to our collective understanding.’
– Dr Helen Sanderson, author of Person-Centred Thinking with Older People

‘Great book on integrated, person-centred dementia care. Clearly identifies issues often overlooked: importance of relationships in delivering good care; pivotal role of care homes in caring for people with dementia; and value of addressing staff needs so they can be in good relationship with others. It’s not rocket science!’
– Julienne Meyer CBE, PhD, RN, RNT, Professor of Nursing: Care for Older People City, University of London, Executive Director, My Home Life programme

Why does delirium matter so much to me?

I was fascinated by delirium so much, I even wrote a book on it. It’s been a pleasure to write this book purely for personal reasons.

This book is not about managing a condition.

This book is about caring for a person. This is challenging – but the potential rewards are huge. Whatever your view of cognitive neuropsychology, one based on the modularity of mind or one based on distributed neuronal networks, delirium represents perhaps the ultimate challenge. As I know from my own experience, watching a loved one flip in and out of ‘delirium’ is profoundly shocking. There was a time when the attitude that ‘this is just what happens to older people’ was seen as a legitimate response to delirium; but thankfully times have changed.

Delirium is a cause of major emotional distress to those around including staff. It could also lead your loved one never to return home after a hospital admission, but instead lead to a fast transfer to a nursing home. It could perhaps lead to an accelerated decline in cognitive function.

Delirium has a huge, if largely unmeasured, financial impact including indirect costs and opportunity cost. It seems rather perplexing why all the doctors on a ward round might genuinely seem unperturbed by a patient in deep sleep, hard to rouse at 11 am in a busy noisy ward, with the curtains wide open. In response to a basic enquiry from a relative, who has fought hard to be on the ward during ‘visiting hours’, a doctor might not actually be able to explain what has caused this rapid change in personality and behaviour, or when this horror of the delirium experience will finally be over.

The contents of my book are as follows.

Delirium can happen in any care setting, including at home. We need anyone involved in care, especially of those at-risk including people with dementia, to be able to spot it (chapter 1). On suspecting it, we need delirium to be identified, diagnosed and managed appropriately (chapter 2). Some individuals are particularly at risk of dementia (chapter 3), and it’s worth knowing how one might minimise the chances of developing dementia.

For that period of time when a person is experiencing a delirium, that person takes a temporary diversion from his own life course. It’s as if his sense of personhood has been ‘suspended‘. But it’s worth thinking about the significant effects of suspending a patient’s identity as a person. The full force of this argument would be to strip him of dignity and of an entitlement to other human rights. It is shocking that relatively little attention has been given to addressing how to optimise the conditions for person-centred care, but this should be a goal of high-quality care (chapter 4).

Communication is not only essential between the person delivering delirium and all those providing care, but is also essential between all members of an interprofessional team for effective teamwork (chapter 5). Even if a person with delirium himself is uncommunicative, the promotion of health and wellbeing, for example early mobilisation and good nutrition and hydration, are critical (chapter 6).

There is an impressive army of interventions in delirium, including non-pharmacological and pharmacological approaches (chapter 7). Given that we do not understand the precise neuroscience behind delirium, work in this space has been surprisingly successful. But there is now robust recognition that patients can have range of outcomes after delirium (chapter 8), which means that prompt recognition and management of delirium is a moral imperative as well as a legal one from the perspective of patient safety. A person with delirium might have long-lasting psychological effects of the delirium episode, and the power of stories of survivors of delirium cannot be underestimated (chapter 9). Enabling and protecting a person while experiencing delirium must be achieved somehow, and all persons involved in high quality delirium care must understand the current legal and ethical issues. Only this way can one understand how decisions may be made in care, and also why objections are raised against restraints and inappropriate chemical medication (chapter 10). Knowing when delirium is reversible, appreciating what to do when somebody in his last days with delirium, and understanding the scope of services is important for anyone with an interest in palliative and end-of-life care in delirium (chapter 11).

Beneficial improvements in providing high quality care through quality improvement are easier to achieve when interested parties are involved in, rather than the recipients of, change (chapter 12). Educational initiatives, whether developments in the undergraduate curriculum or innovations in service provision such as the use of simulations or e-learning, continue to ensure that a well-trained workforce can recognise and do something about delirium (chapter 13).

“Essentials of delirium – everything you need to know about delirium care” by me with contributions by Prof Alasdair MacLullich, Prof Sharon Inouye, Mr. Mark Hudson, Dr Amit Arora and Dr Daniel Davis will be published by Jessica Kingsley Publishers in June 2020.

 

@dr_shibley

 

 

Essentials of delirium

My book ‘Essentials of delirium’ will be published by Jessica Kingsley Publishers in 2020.

 

As I know from personal experience, watching a loved one flip in and out of ‘delirium’ is profoundly shocking.

 

Delirium is a cause of major emotional distress to those around. It could also lead your loved one never to return home after a hospital admission, but instead lead to a fast transfer to a nursing home.

 

It could perhaps lead to an accelerated decline in cognitive function.

 

It seems rather perplexing why all the doctors on a ward round might genuinely seem unperturbed by a patient in deep sleep, hard to rouse at 11 am in a busy noisy ward, with the curtains wide open. In response to a basic enquiry from a relative, who has fought hard to be on the ward during ‘visiting hours’, a doctor might not actually be able to explain what has caused this rapid change in personality and behaviour, or when this horror of the delirium experience will finally be over.

 

Delirium can happen in any care setting, including at home. We need anyone involved in care, especially of those at risk (including people with dementia), to be able to spot it (chapter 1). On suspecting it, we need delirium to be identified, diagnosed and managed appropriately (chapter 2). Some individuals are particularly at risk of dementia (chapter 3), and it’s worth knowing how one might minimise the chances of developing delirium.

 

For that period of time when a person is experiencing a delirium, that person takes a temporary diversion from his own life course, it’s as if his sense of personhood has been ‘suspended’. But it’s worth thinking about the significant effects of suspending a patient’s identity as a person. The full force of this argument would be to strip him of dignity and of an entitlement to other human rights. It is shocking that relatively little attention has been given to addressing how to optimise the conditions for person-centred care, but this should be a goal of high quality care (chapter 4).

 

Communication is not only essential between the person delivering delirium care and all those providing care, but is also essential between all members of an interprofessional team for effective teamwork (chapter 5). Even if a person with delirium himself is uncommunicative, the promotion of health and wellbeing, for example early mobilisation and good nutrition and hydration, are critical (chapter 6).

 

There is an impressive army of interventions in delirium, including non-pharmacological and pharmacological approaches (chapter 7). Given that we do not understand the precise neuroscience behind delirium, work in this space has been surprisingly successful. But there is now robust recognition that patients can have range of outcomes after delirium (chapter 8), which means that prompt recognition and management of delirium is a moral imperative as well as a legal one from the perspective of patient safety. A person with delirium might have long-lasting psychological effects of the delirium episode, and the power of stories of survivors of delirium cannot be underestimated (chapter 9).

 

Enabling and protecting a person while experiencing delirium must be achieved somehow, and all persons involved in high quality delirium care must understand the current legal and ethical issues. Only this way can one understand how decisions may be made in care, and also why objections are raised against restraints  and inappropriate chemical medication (chapter 10).

 

Knowing when delirium is reversible, appreciating what to do when somebody in his last days with delirium, and understanding the scope of services is important for anyone with an interest in palliative and end-of-life care in delirium (chapter 11).

 

Beneficial improvements in providing high quality care through quality improvement are easier to achieve when interested parties are involved in, rather than the recipients of, change (chapter 12). Educational initiatives, whether developments in the undergraduate curriculum or innovations in service provision such as the use of simulations or e-learning, continue to ensure that a well trained workforce can recognise and do something about delirium (chapter 13).

 

Chapters

 

This book is divided into 13 chapters, but this separation of information is artificial as many topics cross these chapters.

 

Chapter 1. Delirium awareness

Chapter 2. Delirium identification, assessment and diagnosis

Chapter 3. Delirium risk reduction and prevention

Chapter 4. Person-centred delirium care

Chapter 5. Communication, interaction and behaviour in delirium care

Chapter 6. Health and wellbeing in delirium

Chapter 7. Interventions in delirium care

Chapter 8. Outcomes after delirium episodes

Chapter 9. The delirium experience

Chapter 10. Law, ethics and safeguarding in delirium care

Chapter 11. Palliative and end of life care, and delirium

Chapter 12. Evidence based medicine and quality improvement

Chapter 13. Educational initiatives

 

 

 

A word of thanks.

 

I am grateful to Prof Alasdair MacLullich (Edinburgh) and Prof Sharon Inouye (Harvard) for their introductions, and to Dr Daniel Davis (London) and Dr Amit Arora (Stoke-on-Trent) for their afterwords.

 

Finally, I’d like to thank my mum for teaching me all the really important stuff about delirium. I will always be eternally grateful.

 

Dr Shibley Rahman

London, July 2019

It was nice to be back at the Alzheimer’s Show in London, Olympia

An interesting thing happened on the way to Olympia.

I chatted with the cabbie how you could never ‘repay’ our closest relatives for their love, as they lived with dementia.

In my case – my mum; in the cabbie’s case, his mother in law.

I remember when I used to present ‘Dementia Friends’ sessions I used to claim that you’d be very likely to know at least someone who knew someone with dementia.

When there was originally talk about doing an awareness campaign nationally about ten years ago, I remember that one of the issues was that, in general, people’s knowledge about dementia was poor.

This was held to be responsible for dementia being one of the most feared diagnoses in adulthood. It was also argued that the stigma arose from lack of knowledge about dementia, making people with dementia and their closest unwilling to tell friends and other members of the family about the diagnosis.

I am certain that the policy intentions, therefore, of ‘dementia friendly communities’ are good, even though I myself have argued on a different emphasis to them (see for example the article I published with Kate Swaffer earlier this year in Dementia journal, link).

I had a real sense of déjà vu today at the Alzheimer’s Show.

All the speakers today, I felt, were outstanding [though I felt that the case for minimal cognitive impairment was overstated in drug trial recruitment as ever].

A few years ago, when the show was launched, I did a ‘Meet the author’ slot to present my book ‘Living well with dementia’. This seems like a very long time ago now.

The talk by Adam Smith on challenges facing acute care in dementia was excellent. It gave me a chance to advocate for #EndPJParalysis in the context of my feeling that delirium care in England is on the whole very poor. I was also critical of ‘discharge to assess’, as I mouthed off the notion of ‘medically fit for discharge’, leading people like mum with hypoactive delirium to be unsafely discharged from hospital.

Dr Neil Graham, a Clinical Fellow at Imperial (St Mary’s), gave a brilliant talk on chronic traumatic encephalopathy. This is a subject I’m interested in out of loyalty to Huw Morris, who was my first ever SpR as a SHO at the National Hospital for Neurology and Neurosurgery in 2002. Huw is now a Prof at the Royal Free Hampstead.

I thought Tim McLachlan was excellent. And I’m really grateful for Tim for saying politely that we need to do something about the state of play of health and social care. Many would have simply shied away from speaking out.

I managed to pick up a copy of the best book on dementia ever written – “The Dementia Guide” from the Alzheimer’s Society, which to this day I use as a helpful reference.

I whinged to the NHS Health Education England about the perpetual refrain to ‘train the workforce’. The two at the desk asked me what I’d done about it.

I replied – I’d written a book with Rob Howard. That’s what.

And the best thing was – I got in for free, with minimal dispute at the front door over the fact that I am a medical professional.

 

@dr_shibley

 

The dementia sufferer

“The pen is mightier than the sword” is apparently adage, coined by English author Edward Bulwer-Lytton in 1839, indicating that communication is a more effective tool than direct violence.

I think I first wrote about suffering in dementia as a blogpost in 2014, and then I revisited the topic in my second book on dementia ‘Living better with dementia’ in 2015.

If you type ‘dementia sufferer’ into the Twitter search engine, the tweets broadly fall into two equally frequent categories. The first is where ‘dementia sufferer’ is used with no meaning attached to refer to anyone who happens to have a diagnosis of dementia. The second where it is meant to refer to someone in a derogatory sense. For example, some people refer to Donald Trump as a ‘dementia sufferer’ as he has ‘escaped from a local care home’.

A problem with the term ‘dementia sufferer’ appears to be that some people say they suffer with dementia, but they are still not sufferers. The word ‘sufferer’ clearly has the same roots as the word ‘suffer’, and the study of suffering is otherwise known as pathology. And dementia, as we know even from the Alzheimer’s Society, is ‘not a normal form of ageing’.

The term ‘dementia sufferer’ implies a power dynamic, but in recent years there appears to be a finesse in political correctness in not wanting to use the ‘c’ word – i.e. ‘care’. There is no ‘caring well’ in the NHS Transformation Pathway, ‘Living well with dementia’, which would have to be an enormous oversight to be accidental.

More likely, the plan is to ignore as far as possible that some people do need continuous care, such as my own mum who is suffering from immobility and weight loss from not eating or drinking progressively in the last few months.

Suffering does exist, and the question is whether anyone is entitled to intervene, if you believe all people are autonomous and have inalienable human rights. A point resisted by people living with dementia who advocate on rights is that other people might have rights too, for example the State or carers.

A further complication is added that some people with dementia do not have insight into the symptoms of their dementia, problematic for strict obeying of the religion that the ‘person with dementia is always right’.

Take for example when a person with dementia might be grunting or screaming at night, as an unusual sudden-onset behaviour. This might be medically treatable, for example chest discomfort due to a respiratory infection. But the strict autonomy or rights of a person with dementia might mean that pain relief or treatment for the chest infection is not given ‘in the best interests’, if the person with dementia is unable to verbalise pain or suffering.

And this is not an obtuse, rare example. It is quite common for people with more advancing dementia to be unable to verbalise their extent of pain or suffering. But it is clear from the briefest of descriptions here that a lot of damage can be done emotionally by denying suffering, through a genuine lack of perception or inability to communicate suffering.

As for whether one is ‘offended’ by the term ‘dementia sufferer’, I as a care partner have much more traumatic issues on my mind about mum, so feel somewhat rather as if I don’t have the luxury to think about it much.