When the dust settles on the Bawa Garba case, will we see any clearer?

dust settling

My gut feeling is that we are not at the beginning of the end of the discussion over Dr Bawa-Garba, but reaching the end of the beginning. This is an intensely complex case which has correctly aroused strong and often polar emotions. As far as the law is concerned, there was a set of events which saw Dr. Hadiza Bawa-Garba convicted beyond reasonable doubt of the offence of gross negligence manslaughter.  The right to appeal has in fact been refused, and, by next Monday, the Doctor still have been convicted of this offence.

In the GMC’s skeleton argument for the Court of Appeal case appealing suspension by MPTS to be replaced with a sanction of erasure off the GMC medical register,  this outcome from the criminal court is beyond dispute:

“In rejecting her application for permission to appeal, the Court of Appeal referred (at[36]) to the “truly exceptional degree of negligence which must be established” ifgross negligence manslaughter is to be made out (R v Sellu [2016] EWCA Crim 1716 [Auth: 18]). The Court of Appeal found that Nicol J had directed the jury appropriately.”

Gross negligence manslaughter is, of course, a very serious offence. So it is perhaps unsurprising that many members of the general public will find a sentence completely mystifying in a letter signed by many registered Doctors: “Although we understand you are seeking to do this in the case where a doctor has been convicted of a “serious criminal offence” we are dismayed to learn that this includes gross negligence manslaughter.”

There have been numerous reasons cited for why Dr. Hadiza Bawa-Garba has been unfairly ‘scapegoated’. It is argued that, in the condition that Jack Adcock was found to have at autopsy – septic shock, the boy had a poor prognosis anyway. So it is not necessarily the case that if the antibiotics had been given any earlier, or if the diagnosis had been made earlier, that Jack would’ve lived. It is mooted that Dr. Bawa-Garba was late in reading a x-ray, but a whole load of factors, known to current hospital doctors, prevented Bawa-Garba from reading it any earlier.  Critics say that it is unfair to blame Bawa-Garba for this, when in an ideally furnished hospital there might be a team of radiologists promptly reporting on films even at the weekend, but the reality was Bawa-Garba was on her own, on her first day back, with no induction.

But to the people wishing to see Dr Bawa-Garba erased, this sounds a lot like making excuses for the fact that Bawa-Garba did not seek help, as would have been expected in her obligation for teamwork, communication and partnership under the code of conduct. The MPTS published its assessment of Bawa-Garba’s failings here, but it is clear a whole maelstrom of factors were completely beyond her control. We are told she was a very studious  trainee, bordering on ‘boring’.

The GMC’s case seems to rely heavily on public confidence in the medical profession.

“The crucial question is whether the Divisional Court properly took account of the individual circumstances of Dr Bawa-Garba’s conduct (which included the defence she ran in her criminal trial and which the jury rejected). The Divisional Court cited the relevant parts of the Sanctions Guidance (DC: 16, 49 & 53) and concluded that the individual circumstances of Dr Bawa-Garba’s case were not such that sufficiently significant reasons could be given to justify a sanction less than erasure whilst still maintaining public confidence in the profession and its professional standards in a case such as the present where a doctor had hastened a patient’s death through “truly exceptionally bad”failings. The individual circumstances also included Dr Bawa-Garba’s serious and repeated errors (as described by the Court of Appeal (Criminal Division) and quoted (DC: 2)). The Divisional Court therefore plainly had regard to the individual circumstances of the case.”

And these errors are described, for example, here, in para.10:

“In respect of Dr Bawa-Garba, the Crown relied on the evidence of Dr Simon Nadel, a consultant in paediatric intensive care. He considered that when Jack, as a seriously ill child, was referred to her by the nursing staff, Dr Bawa-Garba had responded, in part, appropriately in her initial assessment. His original view was that her preliminary diagnosis of gastro-enteritis was negligent but he later changed that opinion on the basis that the misdiagnosis did not amount to negligence until the point she received the results of the initial blood tests, which would have provided clear evidence that Jack was in shock. As to the position at that time, however, Dr Nadel’s evidence was that any competent junior doctor would have realised that condition. His conclusion was that had Jack subsequently been properly diagnosed and treated, he would not have died at the time and in the circumstances which he did.”

Even, as Michael Gove will tell you, experts can be wrong. It is possible given the virulence of the organism that Jack might have died anyway.

But for me para.15 about the enalapril makes for interesting reading:

“Before parting from the history, two further details need to be added, neither of which caused Jack’s death. First, having been transferred to a ward (Ward 28) and, thus, out of Dr Bawa-Garba’s care, Jack received what had been his usual dose of enalapril (for his unrelated conditions) from his mother shortly before he fatally collapsed. This was entirely understandable and known to the medical staff on the ward. In fact, Dr Bawa-Garba had deliberately not prescribed enalapril as she was aware (accurately) that it could lower blood pressure, particularly in a dehydrated child. It was agreed at trial that enalapril should not have been given and may have contributed to Jack’s death although it did not cause his death.”

This, though, is highly relevant to how the whole offence of gross negligence manslaughter is satisfied in the law.

CPS guidelines:

This is where the death is a result of a grossly negligent (though otherwise lawful) act or omission on the part of the defendant. The law in respect of this has been clarified in the case of R v Adomako (1994) 3 All ER 79 where a four stage test for gross negligence manslaughter known as the Adomako Test was outlined by the House of Lords:

The test involves the following stages:

a) the existence of a duty of care to the deceased;
b) a breach of that duty of care which;
c) causes (or significantly contributes) to the death of the victim; and
d) the breach should be characterised as gross negligence, and therefore a crime.

The offence needs to be demonstrated beyond reasonable doubt to secure a criminal standard of proof. But the enalapril can be argued as breaking the chain of causation – what is called a ‘novus actus interveniens’.

The lack of discussion for this is the most alarming part of the Bawa-Garba case.

See, for example, this description:

Novus actus interveniens is Latin for a “new intervening act”. In the Law of Delict 6th Edition, Neethling states that a novus actus interveniens is “an independent event which, after the wrongdoer’s act has been concluded either caused or contributed to the consequence concerned”. A novus actus breaks the causal chain between the initial wrongdoer’s action and the liability that is imputed to him or her as a result thereof. A requirement for an act or omission committed after the initial wrongdoer’s act to constitute a novus actus is that the secondary act was not reasonably foreseeable. If the subsequent event was reasonably foreseeable at the time of the initial wrongful act, it is not to be considered as a novus actus capable of limiting the liability to be imputed on the initial wrongdoer. “

But the die is probably caste for Bawa-Garba. Bawa-Garba’s lifelong career intention to be a paediatrician is destroyed, so are the dreams of Jack Adcock’s family, and the GMC comes across by some as supporting vindictiveness and nastinesss. If the conviction is viewed as secure, and the MPTS does not want to give out any message that gross failures in the system are an ‘excuse’ for a doctor to deliver unsafe care, it is hard to see someone functioning fully on the GMC register. For some, this will be necessary to see justice done. For others, it undermines the work of doctors daily who consider themselves trying their best under very difficult circumstances, even risking going into custody. It’s clear that a set of factors have clearly conspired to kill this doctor’s career, whatever the virulence of the organism that killed Jack but needed to be treated promptly, and Bawa-Garba won’t  forget about these events ever. And nor will Jack Adcock’s family.

I doubt when the dust settles, we will see any clearer. If anything, the verdict, whatever happens, will mark the beginning of an unpleasant debate.

 

The author is indebted to conversations with John Clarke (@C7RKY) and Dr Gordon Caldwell (@doctorcaldwell) over this issue.

@dr_shibley

Share This:

Thoughts on #BawaGarba

 

 

HBG

Excuse me a little, as I’ve personally been through the entire regulatory process, and I find the GMC decision in #BawaGarba very complicated. The timeline is even more complicated.

Understanding the law of gross negligence manslaughter has not been a great help to me. I studied this for my Bachelor of Law in 2009. I was restored onto the GMC register after a period of absence (2006-2014), and a protracted period of self-reflection has indeed helped me to understand the perspectives of the doctor and  the traumatised.

The phrase ‘there but the grace of God go I’ is really no solace for a relative who will never forget ‘that day’ in hospital until he or she dies. When doctors proudly boast they have luckily escaped killing one of their patients, this runs the risk of appearing to be a testosterone-driven boast, and belies a sheer callous contempt of patients, where their job or career appear more important. What Doctors mean is that they are having to make risky decisions daily, and nothing has gone seriously wrong yet, presumably?

This genuinely worries me. Also worrying is nobody will actually ‘up sticks’ or ‘speak out’ against the system, unless something actually goes wrong. No ST6 will want to phone his or her Consultant on a busy on-call for fear of not appearing autonomous or confident, even though after the event it seems ‘good to talk’.

Saying to a devastated relative that there is a team ‘learning from mistakes’ when that relative might be traumatised that he or she was waiting for hours, the clinical assessment then seemed rushed or incomplete, and a relative dies, seems inadequate.

And indeed it seems entirely appropriate that the new sentencing guidelines does allow for actions or omissions causing for death in high risk healthcare environments as a significant mitigating factor, causing low ‘culpability‘.

The principles behind gross negligence manslaughter are clearer than one might expect. By assuming the duty bleep, the buck will stop at that ST6, in ‘assuming the duty of care‘. But an issue about whether the ST6 should ‘cop the bullet’ in the face of a plethora of other issues going wrong is important, as it potentially implies an imperfect doctor singularly working in a perfect world otherwise.

I intuitively feel though that medical manslaughter is different, otherwise you’re potentially subjecting highly skilled doctors, who work in high performance teams in highly stressful environments, such as acute medical care in the country’s national referral centres, to a situation where they’re being set up to fail.

And of course you can get highly complex medical cases in busy DGHs, and any rank of doctor, including experienced Consultants, can face the #BawaGarba situation. In other words, we need to encourage the brightest of doctors to face complex medicine, not be frightened of it.

There is a perception that certain doctors are very arrogant and don’t care about making mistakes. I agree that the GMC should show extreme sanctions for those doctors on the register who show complete contempt for the code of conduct, but I don’t feel #BawaGarba falls into that category.

In innovation, you have to crack an egg to make an omelette. For that matter, as a clinician, you may have to put up with risks and uncertainties in the clinical environment, often working with incomplete information, to function. I am not in any way promoting risky medical practice, i.e. not promoting patient safety, but I am suggesting that some doctors, for example doing highly complicated surgical operations or procedures, or dealing with highly complex medical cases, have to deal with a high element of risk.

And the law of manslaughter, killing someone through an act or omission, unintended, but through recklessness, has to be dealt with in the framing of medical manslaughter. Even if #BawaGarba is successfully struck off, but then successfully returned to the medical register at least five years later, she is bound to be at risk of being a much worse doctor than when she left the medical profession? And then what has been achieved? If #BawaGarba had shown no contrition, such a period of ‘punishment’ would have been perhaps justified, but, as far as I know, #BawaGarba says she will live with that day for the rest of her life. But the patient’s relative will be permanently emotionally scared too; “life changed”.

I don’t deny this. This will be a landmark for the rest of her life, and cause her immense trauma for years to come, whatever happens.

I hope the GMC can look at this sensibly, otherwise they might accidentally promote a culture of fear where mistakes or errors are driven underground, and the NHS truly has a secretive culture where doctors are adversarial with its regulator as well as patients.

There were no winners in that case. The outcome was truly heartbreaking and nothing will ease the pain ever.

 

@dr_shibley

 

 

Share This:

My recent experience of acute hospital care for a person with dementia. It’s all in the implementation.

 

My mum’s emergency acute admission to a local busy NHS teaching hospital here in North London was in many ways ‘the best of times and the worst of times’.

 

There was a lot to be cheerful about. Many of the registered state nurses and health care assistants were teaching each other in front of my eyes about dementia care, in a way I had not expected. You see, my mother has been recently diagnosed with mixed Alzheimer’s and vascular dementias, and, as her only son who lives with her, we have both found the actual experience rather tough going at many times.

 

Nobody gives you a manual on how ‘to care’. You always feel you are not doing a good enough job, even if you are actually working at full throttle. You don’t often perceive of yourself as a carer, essentially doing a full time job, as you fell insidiously into the role.

 

I am on the GMC medical register, with a license to practise, so it was hurtful to see a Consultant essentially examining my mother in the Acute Treatment Area treating her like a slab of meat. My mother was clearly uncomfortable lying flat on the trolley, and, when I asked why the Doctor had not introduced herself, she said her name and that she was a Consultant.

 

I also found it hurtful that many healthcare professionals seem to judge me personally on my ataxic gait, dressed casually, jumping to conclusions over my perceivied lack of intelligence. One health care assistant aggressively accused of me being ‘drunk’, when in fact I have not had an alcoholic drink for over ten years being in recovery.

 

When my mum was on the acute medical assessment, it was the pits. There was a constant stream of different people, never introducing themselves (despite the #hellomynameis campaign), mum being taken to investigations without any warning, mum being expected to give information when all she could reply was, ‘ask my son’.

 

When I dared to explain I was entitled to visit my mother outside traditional visiting hours, another nurse pointed to a poster on the wall describing ‘John’s Campaign’. There’s no doubt for me that the campaign has been a roaring success with the ostensible backing of the great and the good, including the media, but it was disappointing to see a few nurses pointing at posters to demonstrate to me their actual understanding of the need for the campaign.

 

The dementia-friendy ward where my mum was transferred to was brilliant. The signage was excellent, though I did notice that the ‘dementia friendly clock’ was showing the wrong day one day which even I found disorientating. One HCA taught a nurse to give a massage rather than bleep the oncall for an anxiolytic.

 

And indeed the ward were very prompt at getting my mum sitting upright in her chair, with an inflating cushion, instead of lying all day in bed. The senior nurses had a very good understanding too of the spirit of #endpjparalysis, which I was very happy to see, and even provided a clear discussion of the potential problems in the campaign’s implementation.

 

But for all the incredible work of the staff on that hospital, system failures continue to undermine the patient and carer experience. I felt the social worker was the most impressive professional I have personally met in my lifetime, and indeed Wayne from transport was an incredibly nice guy.

 

We did end up waiting for transport for five hours and in the end mum and I left in fact at 11.30 pm after my mum had become quite agitated. But this is nothing to do with the hospital, but all to do with wider politics nationally.

 

@dr_shibley

Share This:

One day, there will be no paid carers for people living with dementia. Crisis, what crisis?

 

To a response of massive incredulity, the current Chancellor of the Exchequer, Philip Hammond, pre-briefed Andrew Marr at the weekend about the new heat of technology about to take over.

 

Mr Hammond tried to make a point about new technology and employment by correctly pointing to the lack of unemployed shorthand typists despite their skills becoming obsolete.

 

When a cure for dementia emerges in 2025, that’s only eight years away folks, we will no doubt wonder what will happen to the employment prospects of paid ‘dementia carers’.

 

In the rush to cutting costs and automisation, it’s conceivable that dementia robots, such as Paro Seal, will replace the equivalent of the shorthand typists – ‘doing more for less’, and achieving ‘better value’.

 

Finding a cure for dementia has always had the whiff of the search for magical snake oil. The last few years have witnessed, in addition to an acceleration in the number of failed phase III therapeutic orphan drugs for dementia, an increasing diversity of acrobatic attempts at finding a breakthrough.

 

For example: none of our attempts so far have worked, even with rampant evangelical attempts at ‘joining dementia research’, so a megabucks grant goes in, with the usual peers marking each other’s homework, on the combination of spurious variables which might predict even vaguely an increased risk of dementia.

 

The brilliant academic Adelina Comas-Herrera (@AdelinaCoHe)  herself tweeted what seemed an innocuous question the other day about what was known, or had been reported on, the relative resource allocations of cure and care.

 

This is of course is a question which nobody really wants to answer. It is clear that it would be nice not to argue about it, in that we should fund both. But this answer is a total cop-out, given the unavoidable ‘zero sum gain’.

 

As a comparison, the £38 billion going to pay the European Union is not going to be spent on the day-to-day running of social care, which everyone agrees is on its knees despite the valiant efforts of social workers daily.

 

And it seems that each penny of the £38 billion is well spent, and pretty easy to “sign off”, for some future ‘jam tomorrow’ whatever the travails of today. The future is apparently bright.

 

And if at all goes wrong, all the current ‘leaders’, particularly in the third sector or regulators, will be nowhere to seen, in much the same way that the ‘divorce bill’ is nothing to do with Nigel Farage.

 

It would be nice to think that Britain can get the best possible clean exit from the European Union. But no amount of lies will get round the hard facts from experts.

 

Even if we find a cure which covers all >100 dementias by 2025, we don’t know what the role of cognitive therapies through person-centred care will be in maintaining good brain health. This is analogous to refusing to acknowledge a need for a relationship with countries with the European Union after we ‘take back control’.

 

According to Dominic Grieve MP, Brexit was sold as an “all singing and dancing project, and nothing could be further from the truth.” And this is of course the story of a cure for dementia to a tee.

 

Crisis. What crisis?

 

 

@dr_shibley

 

 

 

 

Share This:

How might we further detail the identity of frailty?

The current future direction, and indeed past, of “frailty”, for both service provision and research at least, are both intimately linked with the angle of perspective you decide to choose.

“Anekāntavāda” (Sanskrit: अनेकान्तवाद, “many-sidedness”) refers to the Jain doctrine about metaphysical truths that emerged in ancient India; it states that the ‘ultimate truth and reality’ is complex, has multiple aspects (https://en.wikipedia.org/wiki/Anekantavada).

The Jain texts explain the anekāntvāda concept using the parable of blind men and elephant, in a manner similar to those found in both Buddhist and Hindu texts about limits of perception and the importance of complete context.

A famous parable has several Indian variations, but broadly goes as follows:

A group of blind men heard that a strange animal, called an elephant, had been brought to the town, but none of them were aware of its shape and form. They then tried to deduce its form from some preliminary investigations. In the case of the first person, whose hand landed on the trunk, said “This being is like a thick snake”. For another one whose hand reached its ear, it seemed like a kind of fan. As for another person, whose hand was upon its leg, said, the elephant is a pillar like a tree-trunk. The blind man who placed his hand upon its side said, “elephant is a wall”….”

The ‘ultimate truth and reality’ in frailty are sometimes difficult to see, when processes, procedures and policies appear to be so dominant in the discourse.

Part of the drive to wanting to ‘do something’ about frailty, as for dementia, is that there appears to be so much to stake in terms of exposure to risk of increased morbidity and mortality. As for dementia, the rationale has been to hope to intervene in a more timely way, with more accurate timely diagnoses. Frailty could learn lessons here from other fields such as dementia.

Artificial intelligence (AI) is a field of computer science that aims to mimic human thought processes, learning capacity, and knowledge storage. AI techniques have been applied, for example, in cardiovascular medicine to explore novel genotypes and phenotypes in existing diseases, improve the quality of patient care, enable cost-effectiveness, and reduce readmission and mortality rates.

Precision medicine is a new paradigm that combines diagnostic, imaging, and analytical tools to produce accurate diagnoses and therapeutic interventions tailored to the individual patient. This approach stands in contrast to the traditional “one size fits all” concept, according to which researchers develop disease treatments and preventions for an “average” patient without considering individual differences.

If frailty is viewed as a number of different symptom clusters, involving heterogeneity, a ‘swiss army knife’ approach to managing frailty might, in fact, reap dividends.  The “one size fits all” concept has led to many ineffective or inappropriate approaches across health and social care, especially for disease such as dementia and cancer, where comorbidity is the norm rather than the exception.

Psychiatric diseases are very heterogeneous both in clinical manifestation and aetiology, and many care of the elderly conditions are heterogeneous likewise. With the growing interest in personalised medicine, it becomes even more important not only to classify or diagnose someone as a patient with a certain disorder, its treatment needs a more precise definition of the underlying biology, since different biological origins of the same disease may require (very) different treatments.

There are different lines of thinking about what frailty is, and a broad consensus has indeed emerged. Frailty might, nonetheless, benefit from a more sophisticated approach to its identification, which takes on board how the person who is frail is just part of a wider ecosystem which brings with it its own factors encouraging vulnerability or resilience. The recent alternative interpretation (a “network approach”) is gaining some support. It suggests that a stressor causes symptoms that activate other symptoms, in a circular, self-reinforcing way.

This theory moves away from disorders being traditionally conceptualised as categorical or dimensional models. For example, while the clinical specialism of psychiatry has shifted its focus to a more biological approach, social factors still have an important role in crosscultural diagnosis, psychiatric disorders relating to social deprivation, rehabilitation and enabling social inclusion. The degree to which society is willing to accept people with various issues and problems has an obvious impact on their quality of life. An alternative representation of the long-term course of Crohn’s disease complications has introduced the notion of the “rolling phenotype”.

As is commonly observed in clinical practice, this definition allows progression to a more severe phenotype (stricturing, penetrating) but also, regression to a less severe behaviour (inflammatory, or remission) over time.  This might be especially fruitful in models of frailty, where a unilateral accumulation of deficits is often left unchallenged, despite various research and service improvement iniatives to provide effective ‘interventions’ for frailty.

Schizophrenia and dementia as complex syndromes are well recognised. Taking schizophrenia, similar to positive and negative symptoms, the three ’syndromes’ or clusters of symptoms appear to represent independent or semi-independent dimensions of psychopathology that frequently coexist in individuals with schizophrenia. Mental health is not the only place where clusters of symptoms occur. Physical symptoms are likely to occur in clusters that may be associated with adverse outcome in patients with heart failure (HF).

Despite the importance of early recognition of worsening symptoms in HF management, the impact of physical symptoms on adverse outcome has been relatively under-explored in the context of symptom clusters. For example, the “weary and the dyspneic” symptom clusters predicted cardiac rehospitalisation and cardiac mortality, respectively. Patient education for self-monitoring of symptoms should focus on symptom clusters rather than single symptom. Targeting management to the right people, the idea behind realistic medicine, is not a new idea. It has been called various things elsewhere, such as “Choosing Wisely” in the United States and “Slow Medicine” in Italy. They all grow from the same root—reduce unnecessary treatment, address unacceptable variation, and deliver more appropriate, personalised care.

 

Share This:

Were ‘dementia friendly communities’ the correct approach after all?

apps

Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@dr_shibley

 

Share This:

Essentials of dementia: dementia awareness for professionals and practitioners

Education, training and skills acquisition are a hallmark of good dementia care.

 

Dementia represents one of the biggest global health challenges facing society today. Proposed dementia care pathways involve many disciplines and health sectors, and a global priority is the continuing education of professionals delivering care (World Health Organisation, 2012).

 

In other words – “dementia awareness” should definitely apply to all practitioners and professionals too.

 

The aim is to support all professionals and practitioners to be responsive to the needs of people with dementia, to continue to develop their skills and expertise and to improve the contribution they make to achieving the best outcomes for people with dementia, their carers and families.

 

In England, it is estimated that around 676,000 people have dementia. In the whole of the UK, the number of people with dementia is 850,000.

 

At the heart of the task to improve dementia care is a workforce not sufficiently equipped to work with people with dementia. For example, people with dementia aged over 65 years occupy one quarter of hospital beds at any one time.

 

Key stakeholders are, however, beginning to respond to the agenda.

 

Some time ago, the Alzheimer’s Society “Counting the cost” (2009) report found that people with dementia are staying in hospital longer than those without dementia, with a detrimental impact on the individual’s dementia and physical health.

 

Around the same time, the Department of Health published the National Dementia Strategy for England in 2009, “Living well with dementia”, which committed to developing an informed and effective workforce was identified as key to delivering the Strategy.

 

It is widely believed that, to support people in living well with dementia, we need to continue to make progress on improving awareness and understanding of dementia to transform the way society thinks and acts about dementia. Every organisation and every person who makes up a community has both a role and a responsibility to act.

 

There is substantial interest from all parts of the health and care spectrum with a real demand for knowledge, guidelines and information from prevention to end of life care and everything in between.

 

Dementia Core Skills Education and Training Framework

 

This Dementia Core Skills Education and Training Framework is an extraordinarily useful and helpful resource which details the essential skills and knowledge necessary across the health and social care spectrum.

 

The Dementia Core Skills Education and Training Framework was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health, Health Education England, Skills for Care and an expert advisory group that ensured multi-organisational and multi-stakeholder representation. Launched in October 2015, it is a comprehensive resource which details the essential skills and knowledge necessary for staff across the broad and varied spectrum of health and social care settings and will support organisations to:

 

  • standardise the interpretation of dementia education and training
  • guide the focus and aims of dementia education and training delivery through key learning outcomes
  • ensure the educational relevance of dementia training
  • improve the quality and consistency of education and training provision.

 

It sets out standards needed in dementia education and training including raising dementia awareness, knowledge and skills for those that have regular contact with people affected by dementia and knowledge and skills for those in leadership roles.

 

 

Awareness and ‘social action’

 

Progress has been made on encouraging businesses, local authorities, the wider public sector and civil society to work together to tackle discrimination through dementia friendly communities.

 

Awareness and social action has already been a phenomenal success with over 2 million people becoming Dementia Friends. Dementia awareness and understanding has continued to increase through the creation of an additional 400,000 Dementia Friends and through the launch of Black and Minority Ethnic materials for Dementia Friends.

 

People aged over 65 now account for over two-thirds of patients in general hospitals and 30% of them will have dementia. Many may be diagnosed with dementia for the first time when admitted to hospital for another reason.

 

As such, all hospitals and physicians need to be ready to manage the care of patients with dementia.

 

All staff involved in dementia care need to be informed, skilled and have enough time to care. They need to be fully involved in the “social action” for change.

 

For example:

 

  • Nurses need good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication.

 

  • Speech and language therapy services should provide equal access to intervention for communication and for swallowing disorders. Early speech and language therapy intervention is crucial so that people with dementia and their carers have their needs met in a timely way.

 

  • Social work is at the heart of empowering people with positive risk taking approaches and making sure their rights are respected and supported (Department of Health, 2014). Social workers seek to build meaningful relationships with people with dementia and their family carers, making sure they remain at the heart of the decision-making process.

 

  • Occupational therapists evaluate persons with dementia to determine their strengths, impairments, and performance areas needing intervention (e.g. Schaber and Lieberman, 2010).

 

  • Likewise, physios can assess problems that restrict a person’s physical activities as well as how able they are to join in with everyday life. The physio can work with the person with dementia and their carers to encourage and promote physical activity and maintain their mobility and independence for as long as possible.

 

 

Dementia awareness and risk reduction

 

To date, there has been limited research concerning public perceptions of brain health and dementia risk reduction. For example, a national survey undertaken in Australia in 2005 found that popular beliefs about dementia risk were weakly aligned with the scientific evidence with a low level of understanding about the association between dementia and cardiovascular factors (Smith, Ali and Quach, 2015).

 

In addition, even if such links are made, such behaviour change is not always easy (O’Donnell et al., 2015).

 

Raising public awareness of how healthy lifestyle choices can reduce personal risk of developing dementia is a priority.  The “NHS Health Check” includes a mandatory dementia awareness raising component for people over the age of 65.

 

But merely providing information about the latest research via educational sessions to health professionals caring for people with dementia may be insufficient to drive change (Goodenough et al., 2016).

 

 

 

 

Exciting developments

 

Commissioners in both health and social care need support to improve their awareness of effective practice in the provision of post diagnostic care and support.

 

Individuals with dementia who may lack the mental capacity to make their own decisions have their rights enshrined in the Mental Capacity Act 2005 (MCA).  Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others’ behalf, and may be expected to be entrenched within clinical practice. Jill Manthorpe, Kritika Samsi and Joan Rapaport (2014) conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. It was striking that some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. All providers of care need to be encouraged to make available suitable training materials to their staff.

 

The World Dementia Council has now been re-formed, with a new Chair and Vice Chair, a refreshed membership and terms of reference and a new more action-focused operating model. Improve awareness of dementia, increase the focus on risk reduction and preventative approaches and diminish the stigma associated with the disease (their work is described here https://worlddementiacouncil.org/our-work/our-vision-and-mission).

 

 

 

About this book

 

For high quality dementia care to be provided, we need a workforce that is not only knowledgeable about dementia but also skilled in the provision of care, and appreciative of its importance.

 

It is striking that other jurisdictions other than the UK have also had difficulties in effectively educating their workforce about dementia.

We hope that, whatever your personal and professional background, however little or much you know about dementia, you will find this book informative, interesting and relevant to your needs.

Please let us know what you think of our book, or how you get on.

Dr Shibley Rahman (Twitter @dr_shibley)

Prof Rob Howard ((Twitter @profrobhoward)

London, August 2017

 

Note:

“Essentials of dementia: dementia awareness for professionals and practitioners” by Shibley Rahman and Rob Howard will be published on January 21, 2018.

 

Contents

 

Foreword (Karen Dening)

Introduction (Kate Swaffer)

 

Preface

 

Chapter 1:

Dementia awareness

 

Chapter 2:

Dementia identification, assessment and diagnosis

 

Chapter 3:

Dementia risk reduction and prevention

 

Chapter 4:

Person-centred dementia care

 

Chapter 5:

Communication, interaction and behaviour in dementia care

 

Chapter 6:

Health and well-being in dementia care

 

Chapter 7:

Pharmacological interventions in dementia care

 

Chapter 8:

Living well with dementia and promoting independence

 

Chapter 9:

Families and carers as partners in dementia care

 

Chapter 10:

Equality diversity and inclusion in dementia care

 

Chapter 11:

Law, ethics and safeguarding in dementia care

 

Chapter 12:

End of life dementia

 

Chapter 13:

Research and evidence-based practice in dementia care

 

Chapter 14:

Leadership in transforming dementia care

 

Afterword

 

Bibliography

 

 

References

 

Alzheimer’s Society (2009) Counting the cost.

 

Department of Health (2009) Living well with dementia: A National Dementia Strategy. Department of Health: Leeds.

 

Department of Health (2014).  A manual for good social work practice. Supporting adults who have dementia.  https://www.gov.uk/government/publications/learning-resource-for-social-work-with-adults-who-have-dementia

 

Department of Health (2016) Prime Minister’s Challenge on Dementia 2020 Implementation Plan, https://www.gov.uk/government/publications/challenge-on-dementia-2020-implementation-plan

 

Goodenough B, Fleming R, Young M, Burns K, Jones C, Forbes F. Raising awareness of research evidence among health professionals delivering dementia care: Are knowledge translation workshops useful? Gerontol Geriatr Educ. 2016 Oct 24:1-15.

 

Manthorpe J, Samsi K, Rapaport J. Dementia nurses’ experience of the Mental Capacity Act 2005: a follow-up study. Dementia (London). 2014 Jan;13(1):131-43.

 

O’Donnell CA, Browne S, Pierce M, McConnachie A, Deckers K, van Boxtel MP, Manera V, Köhler S, Redmond M, Verhey FR, van den Akker M, Power K, Irving K; In-MINDD Team. Reducing dementia risk by targeting modifiable risk factors in mid-life: study protocol for the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) randomised controlled feasibility trial. Pilot Feasibility Stud. 2015 Nov 17;1:40.

 

Royal College of Nursing (2013). Dementia: Commitment to the care of people with dementia in hospital settings, https://www.rcn.org.uk/professional-development/publications/pub-004235

 

Schaber, P., Lieberman, D. (2010). Occupational therapy practice guidelines for adults with Alzheimer’s disease and related disorders. Bethesda, MD: AOTA Press.

 

Smith BJ, Ali S, Quach H. The motivation and actions of Australians concerning brain health and dementia risk reduction. Health Promot J Austr. 2015 Aug;26(2):115-21.

 

World Health Organisation. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO Press.

Share This:

Should we use ‘scare tactics’ in promoting the urgency of dementia?

 

A very fortunate happened yesterday. A London black cabbie had promised me to drive me to the ExCeL centre in London, if I paid him, to attend first day the main conference of the Alzheimer’s Association International Conference.

 

This year, there are no ‘sunny uplands’. There is normally pretty active pre-briefing of the latest phase III trial of a possible cure for dementia. Not this year.

 

But I found the atmosphere of all the junior and senior scientists to be ‘buzzing’. The amount of detail and rigour in scientific method in discovering the neural susbtrates of brain function, of relevance of Alzheimer’s disease, was phenomenal.

 

I last did my Ph.D. in Cambridge between 1997 and 2000 with Prof John Hodges, a world expert in the frontotemporal dementia form of dementia. Frontotemporal dementia is still an important cause of dementia.

 

That black cabbie told me how his mother had been ultimately diagnosed with dementia, although she was first misdiagnosed with dementia in a hospital by a locum doctor when she had a urinary tract infection. She didn’t know what day of the week it was. She thought she was in a hotel. She had heard of Margaret Thatcher though.

 

There is clearly progress being made in the accuracy of diagnosing dementia through biomarkers in cerebrospinal fluid. But I was a junior physician at the National Hospital for Neurology and Neurosurgery, it used to take me at least 30 minutes to get this sample off a patient from using a special needle. And even then that was for inpatients.

 

The aim is with a sophisticated knowledge of the molecular biology of the process causing an individual’s dementia we might be able to slow down its progression more effectively.

 

This is of course partly an admission that the current method of diagnosis by ‘clinical acumen’ is subject to too much error, but the essential issue remains that many in the UK still don’t receive their diagnosis of dementia on time. And the subsequent post diagnostic care and support, for both an individual with dementia and carer, can be not that good.

 

You can’t help feel but proud at the sheer devotion of the scientists around the world, in ‘fighting dementia’, but I on the whole wish they would simply say they love neuroscience. An orange being stripped of its segments and peel, from an advertising company for the Alzheimer’s Research UK, both attracted massive praise and some criticism.

 

Terms such as ‘burden’ still continue to exist with dementia, and there’s no doubt that there are negative aspects to dementia. But I know from close family, who are loved ones, who happen to have dementia, that there’s a lot more to them than the certainty of their diagnoses (or not).

 

 

@dr_shibley

 

 

Share This:

The power of stigma. It was more than a mere balloon.

One of my mum’s ‘favourite books’ is “What the hell happened to my brain?” by her friend Kate Swaffer. Something that none of us predicted that the publisher, Jessica Kingsley Publisher, would arrange for different versions around the world to be produced, but some of the picture covers might get ‘lost in translation’.

The German version was originally somebody holding a balloon to his face. This, it is said, was supposed to signify somebody’s frailty in having dementia.

19225479_10155506101624295_1913312212646770056_n

Amazingly, despite the legal paperwork of liabilities, third party liabilities and contract law, >500 complaints led to this book cover being withdrawn.

Indeed, with me now writing a book on frailty for Routledge with main forewords by Prof Ken Rockwood and Prof Adam Gordon, I can see how the two areas might have blurred together. Frailty, although no widespread international definition exists, broadly refers to a low resilience to and high vulnerability to stressors or shocks when tend to leave a person not fully recovered. This means that someone with cognitive frailty, for example, might easily get affected by an urinary tract infection to become frankly delirious or show cognition at levels of a severe dementia.

Cultural differences do exist. Indeed, if a charity were to market its logo abroad, for example in selling the brand of ‘dementia friendly communities’, if it had substantial financial resources, it might instruct a branding agency to advise on cultural implications (e.g. colour) of the brand in a foreign jurisdiction.

It is hard for any of us who are not German to understand the precise meaning of why somebody holding a balloon to his face is an accurate and reliable portrayal of dementia. Cultural differences are particularly important in English dementia service provision, for example in respecting equality and diversity for population sub-groups such as black and minority ethnic subgroups or lesbian, gay, bisexual or transgender individuals.

I don’t want to go into half a century of literature on ‘stigma’ which I am reviewing for my book on frailty here. I did briefly go into stigma for my 2nd book ‘Living better with dementia’ in the context of dementia. But I have been struck with how the worlds of ‘stigma’ and ‘prejudice’ often have overlapped.

The word ‘stigma’ originally means “mark”. In frailty, it might be obvious in that someone who looks physically frail might be “recognised when you see it”. But there is still the possibility that someone is actually frail who does not ‘look frail’, as identified for example by the Electronic Frailty Index.

And the age old question of ‘what does a person with dementia look like?’ might be relevant here. A person with dementia might not have two heads and four feet, for example. This may seem like a ludicrously defensive statement, but the statement is still often made around the world: “But you don’t look like a person with dementia.”

Stigma is problematic as it can create a sense of “otherness”, at worst a different class or even subclass of “human beings”. This might get inadvertently exacerbated if that class gets their own award ceremonies (“most exceptional person with dementia”) or be the subject of accolades (“awards for dementia friendly communities”).

Unfortunately, what can be somebody’s stigma can be another person’s well intended brand. But the sense of ‘otherness’, or being different, is definitely one to watch out for, as it can engender a sense of inferiority. Stigma, for example, is enough for people with mental health issues such as schizophrenia and psychotic delusions to stop engaging with health and social care services.

Arguably, the sense of ‘otherness’ and ‘differentness’ is not particularly helped when a CEO of an international dementia charity excitedly tweets on a person with dementia speaking, “you could hear a pin drop”, as if that person with dementia is a tenth wonder of the world but not in a good sense.

The significance of stigma for me is that it can lead to individuals being labelled with an overriding narrative of power dynamics, whether from powerful charities or clinicians. This is worth looking out for, whoever you are.

 

@dr_shibley

Share This:

Dementia means dementia – especially for the dementia industry

££

 

The phrase “Brexit means Brexit” epitomises a political farce of the highest magnitude, as no-one, not least Jean-Claude Juncker, knows what Britain ‘leaving’ the European Union will look like.

 

Brexit could mean leaving the single market altogether, halting involvement with the Customs Union, or even withdrawing from the jurisdiction of the European Court of Justice. No-one knows yet.

 

An equally fatuous assumption in the Prime Minister’s Dementia Challenge, where the Prime Minister in question was David Cameron, was that ‘dementia means dementia’.

 

In a world where the CEO of a dementia charity would now become the most influential person in dementia, not a hardworking FY2 grade working in an overloaded memory clinic in a large teaching hospital, dementia was reborne as a lucrative brand and industry.

 

The boon to PR agencies and marketing gurus was not felt by the managed decline of social care and social work, to all extent airbrushed from all policy documents on dementia from the current administration of the UK.

 

The systematised demise of health and social care systems, where experts were valued not rubbished, ran in parallel with the assumption that ‘there is no magic tree’. But as Noami Klein of ‘shock doctrine’ fame correctly pointed out on the Andrew Marr Show this morning, this myth was well and truly busted with the multi-billion pound recapitalisation of the banks after the global financial crash.

 

Whatever the ‘divorce bill’ for the European Union, we’ll pay it. But – to pay the workforce properly to optimise care and to prevent burnout, hmmm… “Cost neutral” dementia friendly communities, with dementia-friendly mail-order catalogues and obliteration of the supply of social housing, could easily pick up the pieces.

 

The pathway of top directors in dementia charities and social enterprises earning lucrative salaries in the dementia industry is deliverable only if some volunteers with dementia act as ambassadors with their travel expenses. There’s no money left for social work or social care, or for nurses, in Lewisham, but there is miraculously money for research and development in a California-based Pharma start-up.

 

It would then become all too uncommon for specialists in dementia to get routinely omitted from discussions or conferences on dementia, with engagement officers and ambassadors ‘too busy’ networking or promoting their charities and social enterprises to talk to clinicians or practitioners working daily in dementia care.

 

Like there are a hundred and one permutations to leave the European Union, there are over a hundred different causes of dementia. The idea that GPs could simply ask ‘have you had memory problems?’ to diagnose dementia was sadly a bit of fake news which took hold after the Prime Minister’s Dementia Challenge.

 

Every clinician with competence in dementia knew that the visual hallucinations in Lewy body dementia or the profound behavioural changes in frontal dementia would not easily get caught by this particular working definition of dementia, however good the marketing of young onset dementia charities.

 

“Virtue signalling” from dementia charity never has had it so good: loosely defined as “many people say or write things to indicate that they are virtuous”. So, intergenerational dementia might mean sitting together in a heavily branded “dementia friendly church” or teaching 3 year olds how to diagnose dementia in primary school (when senior clinicians have been inexplicably failing for decades), not asking very high-income youngsters to pay their taxes.

 

Of course, given the actual complexity of dementia, it is indeed impossible to talk convincingly of a single cure for dementia, even if the refashioning of existant drugs such as trazodone might be hyped up as the brand new cure somewhat beyond reasonable expectation.

 

But it is this promise of the bright future for dementia, for a ‘world without dementia’ or ‘ending dementia’ as espoused by large charities, which is the promised land. Meanwhile, one is encouraged to right to be resentful to pump money into promoting health and social care, in much the same way you should get rightfully get angry at paying your subsidies to the European Union.

 

Bring on the ‘twiddlemuffs’ and the audio playlists to improve the wellbeing of everyone with dementia. As far as I feel, the cure for dementia was a lie so large it should have been put on the side of a bus, but this is a world where anything goes, including reinforcing tower blocks with combustible cladding to give people council tax rebates.

 

@dr_shibley

 

Share This:

a forum for open discussion about the health and wellbeing of older people