For a start, the Royal Free’s obsession with ‘medically fit for discharge’ does not seem to include whether my mum’s intake of food and drink had fallen off a cliff. She was incoherently rambling, and looked as if she was sedated and half-asleep. This is typical hypoactive delirium, and made my mum’s discharge to assess last week unsurprisingly a complete nightmare for me, her full time carer with whom she lives.
It seems totally unimportant to the therapists on this ward at the Royal Free that she has lucid intervals when she can interact with people. Instead, the therapists are uniquely focused on their task-centered care, performing tasks at their time and convenience, irrespective of which persons are awake or which family is around. As a proponent of person-centred care, I find this totally objectionable, as we now enter two whole weeks of mum deconditioning in bed. For all the attention to ‘end PJ paralysis’, I doubt thanks to the inattention of the therapists at the Royal Free, mum will ever gain her independence again. Her food and drink intake, despite palliation needs, had fallen off a cliff, due to the delirium. She was totally ambulant before. The label of ‘dementia’ rather than opening doors has sent her instead hurtling down a route of ‘terminal’ and ‘end of life’, when she was to all intents and purposes ‘living well’ in the community.
My mum is very light-weight, and is very frail. The diagnosis of dementia, with all drugs crossed of including her cognitive enhancers, never mind rebound of an anticholinergic delirium, has become like a noose round her neck, with the frailty completely ignored. Twice I have had to request the medical team to cross off benzodiazepines, midazolam and lorazepam, off the drug chart, which most people accept can be deliriumogenic. The ward has often been very noisy at night, making it unsurprising many patients are so sleepy during the way, whether or not they have been written up for sedating drugs without any discussion with patient or family. The nurses on the ward, however, are truly outstanding.
Some healthcare assistants are very good. Some overreach themselves with banal phrases such as ‘the blood pressure is PERFECT’ and deliberating facing the electronic blood pressure monitor so that the reading is out of sight. The culture is positively antagonistic, with some threatening to ‘report you for being abusive’, if a cleaner sweeps under your feet while you’re sitting at a chair without any warning, or if you wish to connect Mum on Skype with Kate Swaffer in Australia as a bit of reminiscence. Incidentally, the same healthcare assistant who reported me for that Skype was later sat in the corner with her headphones on chatting on her mobile phone, while patients were calling, and also was feeding my mum at high velocity even when she had not cleared the current mouthful.
I had no choice but to seek my mum to get mum admitted, for dehydration and her falling oxygen saturations, even though the admission itself worsened delirium. There is no attempt to reorient mum in a normal sleep-day cycle, and the regular ‘observations’ have the opposite of a calming effect. The precise diagnosis for mum is a mixed delirium, as she can be agitated. I would never dare to inflict my diagnosis or management on mum, given the code of conduct for registered medical professionals. There seems culturally a reluctance to negotiate with the clear diagnosis of delirium, or a discussion of how function may be recoverable, as the underlying pneumonia is ‘cured’ (or more like delirium does not get coded properly as a diagnosis). There seems to be little appreciation that delirium is worth spotting, and is a significant serious risk itself. When you consider that nobody introduces themselves or what they do, apart from a significant outstanding minority, you have to acknowledge there are good reasons for patients being so confused.
I’ve been really appalled with the ‘acute deterioration of dementia’ being such a prevalent attitude, and no willingness to embrace mum’s function prior to the admission. That is entirely in keeping for the reluctance of everyone to know what mum’s function was like prior to admission. It says on mum’s board that she likes word searches. I can say hand on heart that she has never done a word search in her life.
And whilst medically ‘fit’, she now can’t walk – and that’s new from this admission.
I have on occasion wondered what the ‘Frailty Core Capabilities Framework‘ might look like. I have experience of the ‘Dementia Core Skills and Learning Framework‘ also from Skills for Care, having indeed published a book on it.
Unlike dementia, there are very few books on frailty suitable for practitioners and professionals, in health and social care and in housing.
One of the aims of students of frailty according to this new framework is to access up-to-date information about frailty. This is actually quite difficult – there are no large charities concerned with frailty producing factsheets, for example. The new initiative ‘Frailty Focus‘ is a very good website, but this requires service users who are computer savvy.
The Framework seems heavily entrenched in a view of frailty promoted by the British Geriatrics Society, with reference to five frailty syndromes. One is left wondering whether the view of frailty espoused in the framework goes more than a rebadging of the ‘geriatric giants’, for the purposes of making the area attractive to service commissioners.
A big plus of the new frailty framework is that is bang up to date on a view of frailty which I have been espousing, that it is difficult to frame frailty only in terms of the accumulation of deficits. A discussion of frailty must include resilience (and intrinsic capacity).
But I am not alone, in that this brings me directly supporting the approach of the British Geriatrics Society and that of person-centred integrated care in general. That is, health, social care and housing as a whole should be seen as pro-active rather than reactive, so that people who are frail can be ‘offered something’.
And in the absence of robust interventions to reverse frailty, such as nutrition, exercise or multi-component interventions, the new frailty framework is totally in line with current thinking, in promoting assets and community development, resilience, personalised care planning and advance care planning.
The frailty framework also refers to what I feel are enduring themes of frailty, in other words complexity and multi-morbidity.
The framework also emphasises co-production and co-design of services, communication and shared decision-making, ensuring a power dynamic which is far less paternalistic than before. The emphasis on the rights of care partners, and the legal powers of attorney, ensure that the frailty framework reads as a fresh and relevant contribution to post-identification support.
The frailty framework also gets to grips with ways of ensuring independence and quality of life, and I was impressed by the reference to contemporary themes in frailty research, including thermal support, assistive technology and loneliness.
I feel that the frailty framework will do much to get practitioners thinking about what might actually be important to people living with frailty and their care partners. I also reckon it is leading the world literature in frailty, rather than merely following it, and this is no small accomplishment.
For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.
I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.
Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.
This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.
I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.
PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.
I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.
I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.
For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.
A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.
Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.
Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.
The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.
But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.
Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.
So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice, access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.
As a result of my erasure in 2006 from the register of medical professionals in the UK, I had a lot of time to reflect on the events leading up to it. I have from time to time also reflected on this following my restoration in 2014. In the meantime, I had re-trained in law, paradoxically inspired by my experience of the judicial process. This was not a brief Masters in medical law, but both my Bachelor and Masters of Law, as well as the pre-solicitor training course. To do the last bit, I had to be approved as a fit and proper person by the legal regulator, the Solicitors Regulation Authority. I enjoyed my study of the English legal system, and reflect that if I had never studied law I would never have met the late Prof Gary Slapper – a formidable academic with an interest in conspiracy theories and corporate manslaughter.
This is all rather awkward, not least because Charlie Massey and Jeremy Hunt get on well, despite having divergent views on the implications of the #BawaGarba judgment. In a way, the General Medical Council (GMC) does not actually do ‘personal’, although ensuing events do rather appear like a hate campaign. It has become traditional to issue a sop to the ‘victim’ of misfeasance of a Doctor, and I do genuinely feel that there can be few things worse than the mental anguish of a grieving relative. The GMC and Medical Practitioners Tribunal Service maintain separation of powers, and, whilst I feel that the GMC can move in mysterious ways, I feel that the GMC believe that they are doing their very best to maintain public safety and confidence in the medical profession. This blogpost is therefore not an easy one to write, and inevitably will mean that I could accidentally cause offence. I am reflecting on issues to the best of my ability, and, if I fall short, I do apologise.
#BawaGarba found herself in a perfect storm. There are various systemic factors arguably out of direct control of the GMC. These are the exact funding of the NHS, including whether there is a sufficient number of doctors on rotas in individual hospitals. Notwithstanding, the GMC has a statutory duty in education and training, and, from what I know, will intervene in cases where NHS Trusts offer a suboptimal training experience. But there are important other systemic factors. It is quite common for non-white British trainees, once a GMC alert has been triggered, to be ‘thrown to the wolves’ from the regulatory process, but whether this achieves statistical significance is worth exploring. The trend has been for, once these Doctors have been reported, for all positive references to be withdrawn, and, often, although the source of the leaks are never identified, for the Doctors to receive a barrage of unfavourable press prior to any hearing. A media presence seems to defy any traditional notion of contempt of court, or right to a fair trial, as Doctors are subject to a total monstering and humiliation in the media. But it is not uncommon for papers in the English media, and their class of readers, also to subject groups of Doctors, such as EU Doctors, to an utter monstering as well, allowing xenophobia and outright racism to flourish. The scope for moral panic is enormous. But to lay these problems at the foot of the GMC, I feel personally, is unfair.
The GMC indeed also has an important statutory duty for patient safety under section 1 of the Medical Act 1983. The “There but the grace of God go I” used alarmingly frequently by white, English doctors on Twitter might reflect the observation that some Doctors are safer from attacks from institutional racism than others. This is particularly problematic if the NHS Trusts continue on its trend to trigger an official regulatory complaint effectively to cover their own backs rather than a genuine attempt to improve the performance, health and wellbeing of their Doctors employed under employment contracts. This has indeed been witnessed in the enforcement of the junior doctors’ contracts, arguably. Also, the “There but” observation is also problematic from the point of view that it seems to signal an admission that registers an admission that registered Doctors go to work knowingly taking risks and making mistakes. Most Doctors will admit to having taken risks and having made a mistake, and the number of mistakes reported daily in the NHS, a mere fraction of the real number, must urge a need for an open and transparent culture where people can learn from mistakes. But the GMC and the higher courts will tend not to tolerate any mistakes, or catalogues of error, whatever the mitigating factors. This might include an unblemished record for 30 years. The issue is that if the performance is way below a standard, there can be no excuse for it. If somebody has died, the threshold for mitigation has to be high, most reasonable persons might argue. And if a court of law has found someone guilty of manslaughter, whatever the process involved for doing so or the people involved, it is hard to leave no sanction on the Doctor, it is argued, whatever the need for organisational learning. Both the GMC and higher courts have consistently argued that public trust and confidence in the medical profession are more important than any individual doctor’s career.
The argument that ‘We go to work and are caught between a rock and a hard place’ merits scrutiny too. This comes down to the nature of how a crime is satisfied in English law – there can be intention to do the crime, and, although there is some finesse about the jurisprudence, there might be recklessness. The law in this is fairly well settled since R v Adomako. It might seem unfair to blame a Doctor having to cover seven bleeps one morning, but the point in law is that the Doctor by carrying those bleeps has assumed a duty of care to his or her patients, and any breach therefore of this duty of care, given the issues of causation and remoteness, is negligence. It might be argued that in tort the Doctor has assumed this responsibility under duress, but in reality most Doctors pick up the bleep from an office in the Hospital without any altercation. And Doctors are entitled to resign if they feel that there has been a fundamental breach of a contract, including a bilateral feeling of trust and confidence, between employer and employee. In reality, Doctors never do, despite the potential risks for patient safety.
Whilst there might be outrage about the lack of due emphasis on organisational learning, this organisational learning nor indeed any individual duty of candour are operational at any meaningful statutory level, meaning they exist in an Act of parliament or statutory instruments. And nobody is above the law. If there had been no sanction on #GawaBarba, a possible interpretation might have been that mistakes, whatever the reason, are excusable because of the ‘state of the NHS’. It might then be argued that the correct course of action might be for corporate manslaughter against the Secretary of State for health and social care, for ‘avoidable deaths’, but this has to be proven beyond reasonable doubt – an incredibly difficult offence to fulfil, as the late Prof Gary Slapper I am certain would testify.
I doubt, if #BawaGarba finds herself back on the GMC Register, she will find it easy to find employment again, especially with at least a five year gap in training. The GMC, even with its statutory duty for education and training, as well as patient safety, seems pretty indifferent to the professional rehabilitation and retraining of Doctors put back onto their Register. But the observation that no Doctor can ever be professional rehabilitated does concern me, even with the strong emotions that the ‘punishment should fit the crime’, and the need for a scalp can be overwhelming. For example, #BawaGarba has found that her subsequent good performance had become somewhat irrelevant as far as the regulator and higher courts were concerned.
As the old trope provides, there are no winners. There are only losers. It’s said that the GMC ‘doesn’t do personal’ in the same way a sanction is delivered in the same way a parking ticket is issued, and the GMC’s purpose isn’t, it is argued, to do ‘show trials’. The GMC’s position is that they are not in the business of ‘punishing Doctors’, but, I feel, it is of concern that unintended consequences, including a culture of fear, could continue to be dominant in the medical profession. The GMC doesn’t likewise, perhaps reflecting their perceived concerns from the general public, want to allow free rein on Doctors ‘free to make mistakes’, and good doctors will argue that they are all trying to do the job to ‘the best of their abiility’. The problem facing the GMC is whether ‘the best of someone’s ability’ is simply good enough. The general approach is that there is no shortage of doctors, and it is a honour to be a registered doctor. Whether there is a sufficient number of doctors for the demand is a concern the GMC can decide to involve itself with, or not. There is a clause in the code of conduct – Good Medical Practice, 2013 – stating that it is the responsibility of doctors to identify any shortfall of resources. I doubt all the senior Consultants or even STs in training taking to Twitter outraged about the #BawaGarba judgment are writing this morning to the GMC to warn about shortage of resources in their own hospitals, despite concerns about patient safety. It is noteworthy that the GMC in their statement on the case mentioned this only yesterday even. But individual Doctors have also been rather effective at protecting their own backs?
Whenever there is a restricted number of participants in a crowded market, the quality of the product tends to fall as the participants collude with another.
The botched performance of Carillion is a reminder that it’s often the same people on the same management boards of the same companies supposedly competing with another. And it’s the same for certain charities, with the same workforce with different operating brands, simply faking diversity, but in reality offering zilch thought diversity.
Dementia is not of course political, unless you include the ‘chosen ones’ performing very well in the Queen’s Honours List. I really feel it’s time to call out the nonsense of certain ‘dementia friendly’ brands, such as ‘dementia friendly emergency departments’.
I actually have no ideological objection to an enhanced ‘customer experence’ of a patient in an emergency department, but the hijacking of ‘dementia friendly’ a certain way has led to this construct meaning a better customer experience rather than, say, promoting the health of people with dementia and care partners.
There is a ridiculous secondary gain for charities to award scarce resources to fund research into dementia friendly emergency departments so that a few press releases can go out to comfort us all. Forget people with dementia dying while waiting for hours for an ambulance. Ignore people with dementia waiting for hours on a trolley waiting for a hospotial bed, or waiting for hours for transport to go home.
I am basically appalled by how relaxed some principal investigators in research, who are regulated by professional bodies, appear to be in declaring their financial competing interests when publishing academic papers, particularly in areas where these interests affect diagnosis or treatment of dementias.
I am worried how regulated professionals do not appear comfortable about speaking out about unsafe level of resources for dementia care, particularly if they are worried about their research monies being threatened.
The sheer contempt for specialists in dementia seems to predate the hatred of experts which accompanied the Brexit debate. For example, I don’t feel that the culture is healthy enough for us all to have a meaningful debate without causing offence and outrage about the difference between minimal cognitive impairment and dementia, or the heterogeneity within dementia, when I know of at least two people with dementia who will have published books on living with dementia by the end of next year.
The atmosphere really has become quite threatening for some specialists now afraid to voice opinions, with tropes such as ‘people with dementia and care partners are the real experts’. As it happens, I am a full time carer of someone living with dementia too. But it worries me that in the forthcoming APPG consultation on ‘dementia rights’, something I myself wrote a book chapter on in 2015, it will be exactly the same usual suspects, with exactly the same ‘empowerment and engagement’ causing exactly the same stale predictable narrative.
But we do need people to speak out on important issues, on why certain people find it so difficult to obtain an assessment for legal power of attorney following diagnosis, or how people with dementia might interact with the law if it feels that certain decisions need to be made in their ‘best interests’.
We need to discuss whether people have equitable access to medical and legal opinions. Simply airbrushing these discussions due to convenient pseudo-consultations which don’t ask the right questions from certain people, because of dementia friendly cronyism, is not right.
I think the atmosphere of how dementia care and research are evolving is really not right at the moment, and needs urgent attention. It’s when it’s a case of ‘who you know’ rather than ‘what you can contribute’ then you need to worry.
As Emily Thornberry said this morning, “There is nothing stronger than a person of principle…. Thanks to Jeremy Corbyn’s inspirational leadership, and the efforts of all the people in this room, it’s time to put Labour values back into government.” Everything has now in fact changed. This is not merely because the Conservative party, and their bullshit such as £350 million re-invested in the NHS, is a ‘busted flush’. It’s much more than that. I first went to the Labour party conference in 2010 in Manchester. It was in fact a few months before my father was to die. I remember my time there crystal clearly. I remember meeting John Prescott for the first (and only) time in a curry restaurant in the Curry Mile, and various people who were both very young and very energised about being in the Labour movement. David Prescott kindly helped me across the street, avoiding being run over by the trams. I had become newly physically disabled at the time, due to meningitis. In fact, I remember going to a fringe event at breakfast time in Manchester Town Hall on the subject of how to engage ‘missing voters’. Ellie Mae O’Hagan was there. Some brilliant contributions from Matt Zarb Cousin stuck in my mind. I wonder what happened to him.
At the time, I was in the ‘top ten’ Labour blogs. But now is much better. I think this Labour conference in 2017 in Brighton is full of optimism and hope. Labour for the first time in ages, I feel, has a realistic chance of being the party of government. I think we very mostly agree Jeremy Corbyn has turned ‘pro’. He batted away questions on striking from Andrew Marr with amazing ease yesterday morning. The hacks have made it an open secret that they have no conflict to discuss. The observation that Brexit is not one of the motions for debate is the only thing that desperate hacks can cling onto, but you only have to look at the list which has emerged – which includes the NHS, social care, growth and investment and employment issues – to see that there is no existential crisis in the Labour Party. Not at all. It is a party which is prepared to govern for the many, not the few.
The Tories’ economic model of delivering shareholder dividend with rocketing prices, suppressed wages with inflated cost of living, is not appealing to the vast majority. The ‘work til you drop’ approach is terrifying. The way in which disabled citizens have lost their personal independence payment is nothing short of the ultimate in unacceptable morally. Corrupt capitalism has had its day. Grenfell paid testament to that. Outside of the hall, it is very clear that many delegates have been speaking to some of ‘the many’. There has been a strong sense from speakers from the floor to speak out about issues of social justice, in the quest for equalities and fairness. There has been reference to homeless people, which Tony Benn famously used to congratulate market forces for. There has been a clear drive to reset the narrative to appreciate and value migrants and asylum seekers. The Momentum festival has been well received. There is no sense that Polly Toynbee needs to visit it to provide it with external validation. Trade unions defend public services, campaign to prevent abuses of workers and employees, and are no longer a ‘dirty word’.
I voted for Jeremy Corbyn twice as leader of the Labour Party, and, like many, it is tempting not to forget so easily the time which has been wasted in setting out the case for Corbyn again and again and again, the carping and criticism from 170 or so Labour MPs, or the whingeing from senior people in the Labour Party keen to ‘blame’ Corbyn for Brexit. Nor is it quite so easy to forgive and forget the amount of time, effort and money taken by the NEC to stop people voting for Corbyn as leader out of fear that all the new members of Labour were Marxist throwbacks from the 1980s. But the surge in membership of the Labour Party is entirely genuine, making Labour a massive democratic party. This is an especially amazing achievement, given the context of how parties such as ‘Alternative for Deutschland’ with an anti-Muslim and anti-migrant, far right, agenda have garnered support to fill the ‘political space’. True that the Labour Party is not entirely a socialist party, although it has socialists in it. But it is also true that there are many more people are loud and proud to be associated with the socialist ideals and values which have been promoted by the current leadership of the Labour Party.
Whilst the ‘we want a Jobs first Brexit’ is in danger of being a vacuous phrase, there’s no doubt about the dependence of certain sectors, not least the NHS and social care, on EU citizens living in Britain. If it turns out that the Conservatives are simply unable to negotiate a meaningful settlement with the European Union within two years, it is quite possible that the Labour Party will have to do something drastic about deciding upon a post-Brexit future. Jeremy Corbyn openly explained on #Marr yesterday that it was possible that state aid rules had not made it possible to intervene in industries as he would have liked, and actually had helped to privatise certain industries such as rail. It wasn’t that long ago, after all, that there had been concerns about how TTIP might stitch up a trade deal with the US over the NHS, but now the threat to the NHS from Donald Trump and Jeremy Hunt is far greater. Free movement of workers has had problems also with employees, particularly of multi-national corporates, effectively leading to wage suppression, but this fundamentally was always a problem presented by employers. But Labour is well aware that the UK economy could easily tank on Brexit especially on leaving membership of the signatories to the rules of the “single market” or “customs union”, and the devaluation of the pound sterling and exodus of jobs abroad are both already alarming. But if you think to choose who you want driving the car – Boris Johnson, David Davis and Priti Patel or Sir Keir Starmer, I know who I prefer.
Members of the media have consistently been spitting bullets at Corbyn. James O’Brien on LBC spent substantial daily effort into rubbishing Corbyn. The 2017 Labour manifesto was a massive triumph, propelling Labour to its largest vote this century. The Tories claim they even put Jeremy Corbyn on the ballot paper the first time around. Various people sneered at the rallies held by Corbyn across the country, claiming simultaneously that Corbyn had a ‘bunker mentality’ which prevented him from meeting the general public, and saying that there was no such social movement. But it is clear that there is something material and significant happening under the RADAR, as Jess Phillips, Clive Lewis and Laura Pidcock are treated like rock stars rather than members of parliament. Paul Mason, I remember, was often criticised for claiming that “strong and stable” Theresa May would not be returned with a stonking majority, and Paul Mason’s views and opinions, for example, on topics ranging from tuition fees to bellicose nuclear speak from Donald Trump are taken with considerably more gravitas than other commentators. The whole team are pretty awesome now, including Barry Gardiner who is prepared to call out people talking nonsensical crap.
Gains such as Canterbury and London Kensington and Chelsea have been amazing. Amber Rudd’s seat in Hastings is now up for grabs. Nobody can fault how amazing Andy Gwynne has been. Of course, much blood has been spilt and this is to be expected from a broad coalition of sorts. I no longer speak to the Socialist Health Association because of their open support for marketization of the NHS, PFI and Owen Smith. Tom Watson is no longer on Len McCluskey’s Christmas card list. I think critics within Labour have really got the work cut out if they wish not to help Jeremy Corbyn and the Labour party prepare for government. You can tell from the reception to the limp interventions from Ben Bradshaw and Heidi Alexander over the single market that they are not the future now. But supporters of Labour fundamentally know that they did not introduce austerity. Vince Cable, on the other hand, did. The Liberal Democrats cannot be absolved from their blame on the bedroom tax, either. The Fabians, with their star turns, are having trouble trying to reverse the deluge of criticism they have doshed out to Corbyn and colleagues. The Twitter community, with Chunky, Rachael, Steve, Matt, Tom, Peter, Liam, “Scouse Girl”, EL4JC, Michael, WowPetition, Éoin, Matt, Ellie, or Paul, of course going from strength to strength. Labour’s policies speak to the concerns of the many not the few – such as personal debt, only today, being worked up by John McDonnell and Rebecca Long-Bailey. I agree with Jeremy Corbyn that he will need at least two terms of government to get the UK back on course, but there is a real sense of energy, positivity, drive and optimism which means that Labour and its social movement deserve every success.
This was the CORRECT entrance – the Eastern entrance.
If you come to the ExCeL centre in anything other than a black cab, you will be circling the complex for hours before you set foot in an entrance.
Make no mistake – this particular conference was intensely scientific. But it was nice to sink one’s teeth into the something other than the dividend-producing engagement and empowerment of the dementia industry.
Being a card-carrying academic, I personally think there is a lot to boast about in terms of the quality of neuroscience being done globally for dementia. Unfortunately, the genuine advances in the socio-economic-legal policy are dwarfed by a vocal minority of people with massive egos, who have a pathological addiction to introducing themselves to members of their inner circle.
But the good guys were there in force – mainly my Specialist Registrars from 2002 who had now become Professors in dementia at Queen Square.
Take Jonathan Schott.
Or Huw Morris.
(I was especially glad to hear there is now a palliative nurse specialist in the progressive supra nuclear palsy service.)
Prof Martin Rossor – our boss – in fact tapped me on the shoulder as I was walking along one morning. I thought it was a security guard at first!
So there are many reasons to be cheerful.
#AAIC17 for me was total heaven. The enthusiasm of the researchers was authentic and deep, and the camaraderie was inspiring. I still think this was one of the best slides in the whole conference, presented by Prof Philip Scheltens.
The mild cognitive impairment (MCI) continues to be rather fraudulently in my opinion as a ‘staging post’ to dementia, and there indeed to be some professionals who cannot even tell the difference between MCI and dementia. This is rather worrying.
The narrative of the ‘conversion’ has been far too overblown – with nearly hyperbolic remarks on its importance in the lifecourse trajectory in the Lancet Commission which emerged at the end of the conference. The Commission curiously contained a reference to mild behavioural impairment – legitimising of course the self-entitled pronouncements of the medical profession of ‘what is normal’ when it comes to behaviour or cognition.
I agree with the Aunt Sally argument that there is some behaviour which is clearly abnormal (though in Cambridge it was hard to tell as there were indeed some people who had won the Nobel Prize more than once). But one has definitely to be worried about human beings being drugged up to the eyeballs for being a ‘bit apathetic’ or a ‘bit depressed’, on the off chance he or she might develop dementia one day.
I found the Conference quite relaxing, like some package holiday one had been waiting patiently for for months.
My questions at the poster sessions ranged from ‘Where do you park your car at Addenbrooke’s?’ to ‘How long does it take you to do a lumbar puncture?’ Unfortunately, the young postdoc had no idea how long lumbar punctures took, despite her poster being all about CSF TDP43 markers and diagnosis – but she knew the junior doctor had done them all for her.
This is in a sense how idealised and pie-in-the-sky some of the international research has become – the need to focus on a chemically accurate diagnosis, whatever the symptoms are.
And this person is a genuine ‘consumer’ of books of mine and Kate Swaffer, who sits on the World Dementia Council and is CEO of ‘Dementia Alliance International’ – the largest stakeholder group of people living with dementia in the world, the partner organisation of Alzheimer’s Disease International.
It was great to see Kiki from Kenya, who is doing great work on the World Dementia Council – and also a friend of ours.
Everyone knows that the current state of the amyloid hypothesis is a mess – for example, “the drugs don’t work” and there are people around who have loads of amyloid plaques and better cognition than you or me. But why spoil a good story? The feel good factor, like you get in a Billy Graham convention, is of course what conference goers in dementia lap up.
It was nice to see the Lewy Body Society – they have ALWAYS supported my work, and included me. And I am interested very much in Lewy body dementia, and I think Prof Ian McKeith is great.
The members of the Alzheimer’s Research UK team were fun all week – and it was great to see Hilary Evans (and George).
The work being funded by ARUK in neuroscience is of course a complete contrast to the lack of good neuroscience, apart from on cholinesterase inhibitors, which emerged in the Lancet Commission on dementia. The Lancet Commission on dementia seemed to confuse seamlessly whether the authors were discussing Alzheimer’s disease only at one minute, or >100 different types of dementia at another minute. But then again – for some researchers – the Alzheimerisation of dementia was complete long ago.
There was barely any sensible comment on the neurobiology of sleep in dementia, for example, the mechanism by which sensory impairment might lead to Alzheimer’s disease or any other form of dementia, or any meaningful biological mechanism of ‘cognitive reserve’ even though discussed at some length.
But I really should’ve been concentrating on the basics – as for half of the week, I entered the ExCeL centre through the wrong entrance.
This was, however, one of my favourite posters. There is much to be said about how genes, prominent in the development of the human central nervous system, behave in dementia. I know notch-3 because of its rôle in vascular cognitive impairment, specifically CADASIL, but I found Lavinia Alberi Auber’s work as a PI brilliant.
Lavinia was extremely knowledgeable about notch (and Wnt and wingless) as you’d expect her to be.
This was another amazing poster by Kirsty McAleese.
Definitely a star in neuroscience for the future.
The importance of the poster for people interested in how the parietal cortex goes wrong in posterior cortical atrophy cannot be overstated.
I’m a huge fan of the work of Prof Seb Crutch – so I was immediately drawn to these striking results on the neural substrates of posterior cortical atrophy.
Kieran presented his brilliant work on the factors affecting the prescription of anti-psychotics.
The content and tones varied a lot – so one minute it was Kirsty’s poster, and then it was Assoc. Prof. Lee Fay-Low with a sensational talk on dementia policy.
It was great to see some familiar friends, and now good friends, like Prof Dawn Brooker.
Dawn promised to help me with the parts of my new book ‘Essentials of dementia’ I’m doing with Prof Rob Howard that Dawn proposed herself – like “The VIPS model”. We ended up having quite a relaxing chin-wag about Namaste care and the issues of ‘process consent’ (but how Prof Jan Dewing’s work had helped a lot.)
I looked carefully at Barbara’s poster on behalf of some geriatricians who strongly support the bedside ‘clock drawing test’ for dementia.
With the ‘greater awareness’ of dementia (however-so defined), there is going to be a varying perception of risk.
I’ve always liked Dr Richard Milne since we first met in Newnham College in Cambridge for a mini-conference on dementia.
And his poster was a crowd puller – as well as really important work if we want to get people interested in slowing the progression of dementia in those people who’ve been newly diagnosed with it.
One hopes that the urge to publish something ‘big’ on dementia during #AAC17 was not primarily due to the lack of progress on novel neuropsychopharmacological cognitive/behavioural interventions (and a big Phase III trial result) – but of course I would never be so cynical.
It makes intuitive sense that dementia develops long before the existence of symptoms. In other words, brain changes which lead to dementia are already setting foot in people when they are young.
But the problem with framing it as ‘this can prevent you from getting dementia’ argument is precisely what somebody living with Lewy body dementia once told me – “Shibley, I did none of that, and I still have dementia.” It is far better to frame the approach as risk reduction.
Baroness Thatcher and Harold Wilson were both highly educated Prime Ministers, having gone to a University called Oxford University.
And they both developed dementia.
There will be people who live ‘virtuous lives’ and who still go onto develop dementia.
Quite amazingly, there is no mention of “determinants” in the main body of the text – and inequalities is only mentioned once in the text of the Lancet commission. This is simply not acceptable if one is taking seriously a life course analysis.
I was left genuinely wondering whether this Venn diagram from the Lancet Dementia Commission could’ve been easily adapted for frailty – but this thought is an artefact of the Commission consisting of the ‘great and good’ in that particular disease operating in rigid silos.
For example, there as a huge amount on abuse in the Lancet Commission but nothing on deprivation of liberty safeguards. Academics work too in their own silos, promoting their own research grants too much, meaning that the work can too easily distorted and biased.
There is never any discussion of how the Wishlist for statistical analysis is derived (except the statement “We sought to calculate a combined PAF for known modifiable risk factors for dementia. We decided which risk factors to include by identifying those listed in the UK National Institute of Health and Care Excellence (NICE) and US National Institutes of Health (NIH) guidelines” is bordering on the too whimsical.)
There is never any discussion of the degree of independence of the factors (e.g. diet and diabetes), so consequently the results and discussion appear much more precise than they deserve.
Prof Rob Howard’s talk was exceptionally useful – given how thorough and methodologically sound it was. But the acoustics were terrible.
And the lack of sensible discussion in the talk and the paper on the factors affecting ‘social vulnerability’, such as the effects of poverty, poorly organised health and social care systems – genuinely troubled me. One of the questions in the audience alluded to whether the report was too medical – and I wonder about this too.
Even though the panel discussion of social vulnerability in the launch was poor in response to my question generally, Prof Alistair Burns correctly referred to the section of the paper which does indeed refer to social vulnerability – that is, of course, depression. (This impacts on social networks, loneliness and inclusion, discussed elsewhere in the paper.)
There is no mention of “advance decisions” or the “United Nations Convention on Rights of Persons with Disability”, and only a mention of human rights in relation to abuse, which lead to me to conclude that the The Lancet Dementia Commission did not understand at all the legal field of substituted decision-making and the full importance of autonomy. But having said that the discussion of advance care planning, and the importance of palliative care/end of life, was exemplary in my view.
If you’re genuinely interested in research, this conference is really for you. I had a thoroughly enjoyable and all too brief chat with Prof Ken Rockwood. Ken’s work is extremely well known to me – and I am particularly looking forward to discussing the work of Ken and of colleagues in Dalhousie University, Nova Scotia, in my book ‘Frailty: from assets and deficits to resilience’ for next year (Prof Ken Rockwood and Prof Adam Gordon are doing the forewords.)
It was great to meet people I’d never met before – including Dr Joe Kane, a SpR in psychiatry with an interest in Lewy body dementia.
Some people transcend all whinges I have – because they’re such decent people.
Chris Roberts is the best.
Rebecca Myers and I have been writing a book together for some time.
It’s called “Courage and leadership in healthcare: a critical analysis”. We are honoured that Sage Publications (Books), highly celebrated in this field, have agreed to publish our book in 2018.
Sage, of course, publish the journal “Dementia: the International Journal of Social Research and Practice.”
We hope that our book will find relevance to all health and social care professionals with a particular interest in management and leadership. We are actively looking for people who wish to volunteer to give a clear account of their experiences (such as – and this list is not exclusive and complete – difficulties in ‘speaking out’ against the system for example clinically in safe staffing or “blowing the whistle”, courage in raising issues about bad policy or conflicts of interest, courage in coping with public failure, courage in facing terrible standards in healthcare directly or as a close relative or friend, courage in scientific research, courage in dealing with personal loss of a loved one, courage in dealing with the illness of someone close).
We anticipate that the book will have a number of important aspects – and we want people who use the health and social care services, as well as people who work for and run services, to tell us what they think is important about what is being done right (and wrong).
Moral courage is the courage to take action for moral reasons despite the risk of adverse consequences.
Courage is required to take action when one has doubts or fears about the consequences. Moral courage therefore involves deliberation or careful thought.
The concept of moral distress is not new. Jameton (1984) offered the first definition of moral distress in the nursing literature. He stated that moral distress is the stress that occurs “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action” (p. 6).
Courage is also critical to people who run the NHS and social services. Lessons can be drawn from the leadership styles of people who have brought about exhibited great courage and brought about change, such as Gandhi or Martin Luther King.
Change is a powerful force in healthcare systems, and essential for healthcare systems to match provision to meet needs of patients and users.
Courage can be extremely personal too. Courage historically has been couched in the language of adversarial combat, and this runs in parallel with media messaging of conditions such as cancer or dementia. We will consider whether it is appropriate to consider cancer or dementia as a ‘fight’ – in that there are some cancers, for example, where complete remission is a possibility.
While anything can happen to anyone at any time, the preparation of death is important, for example, in palliative approaches; and has implications for individual reactions to life-changing illnesses and the lives of close carers.
Professionals and practitioners, and students, working in health and social care can get ill themselves too. Courage is needed to have to deal with multiple demands, such as the threats to health and illness themselves, the regulator, the media, impact on friends and family, and intense stigma and exclusion from peers and colleagues. (I hope to write about this from personal experience.)
The term “blow the whistle” has long been felt to be a strong phraseology for the courage to speak up against cultures which have gone wrong. Problems have still remained pursuant to the Public Interest Disclosure Act (1998) which is supposed to protect public sector employees. And yet speaking up courageously is often needed to promote patient safety, a key duty of all registrants in healthcare.
We will give an account of the individual experiences of people who have spoken out against the system, including misdiagnosis of important conditions, criticising poor clinical care, and speaking out against child abuse. Often people who speak out find themselves emotionally and intellectually ‘burnt out’ too, and the chapter will consider the pivotal need to protect staff wellbeing too.
Our book is a timely look at an important professional strand for all practitioners and professionals, patients and service users, and all other members of the general public. We hope you will help us get the content and style of the book right – and we hope especially you can directly contribute.
In political circles, there’s an “unwritten rule” that ‘voters don’t do macro’. In other words, voters tend not to get concerned about the actual numerical level of GDP or national minimum wage, but whether policies affecting the country affect them personally.
Rachel Clarke’s “Your life in my hands” has 14 chapters, each with a one word title, such as “Haemorrhage” or “Haemostasis”. You realise quite quickly on in this book that the author’s account of being a junior doctor is deeply personal, as well as acknowledging the larger narrative elsewhere. Each chapter has a memorable individual and an equally useful narrative on the wider context.
The commitment to being a junior doctor shown by the author is extraordinary. Here is someone who had a glittering career in journalism ahead of her, but who choose to fit in science A levels in her spare time to make her eligible to do a second degree in medicine.
The author can spot all the devices of journalistic spin a mile off – so one can only imagine her intense disappointment about the junior doctors’ strike being reduced to an industrial pay dispute, being seen to be protracted by an overzealous BMA, and potentially doing harm to patients whom Rachel Clarke clearly loves.
I normally, being annoying, like to read everything very carefully, including the epilogue. And here the epilogue is deeply poignant. It speaks of a personal influence on the author. Sometimes the criticism is that being a junior doctor is simply like doing any other ‘job’, but Rachel Clarke’s personal familial influences on medical professionalism are deeply raw, very insightful and quite often surprising. And the descriptions of very vivid ‘brushes with death’ are incredible.
My late father was a much-loved single-handed GP of about 30 years’ standing, and I remember him getting up at 3 am to drive to a patient’s house, when I was a very young boy, even now.
The time when Rachel Clarke’s young boy, acting the part of a paediatric surrogate patient, points out to some hapless medical students, ‘it’s called a stethoscope’ is brilliant.
Even though the characters referred to in the book are anonymised, I recognised most of them. The descriptions are amazingly fine-grained. If you’re a stickler for detail, the character portraits are brilliant. In my case, the heroin addicts were brilliant at shooting up themselves.
The notorious fear of cannulaes and cockroaches would make any junior doctor proud. The accounts of friendships made, as well as experiences such as exact contemporaries saying, “Please could you have a look at this? I’m not really sure”, are brilliantly described.
Also, the sheer detachment of the junior doctor workforce from the managers is captured exactly by the promotion of Zumba classes at inappropriate times.
The clinical vignettes are accurate and interesting, such as the need to cannulate with very large venflons someone about to engulf herself in a gastrointestinal bleed, or the peaked T waves on the ECG of someone with a dangerously high serum potassium.
In my case, one of my latest memories whilst a junior physician at the National Hospital for Neurology and Neurology was the junior doctor in the adjacent cubicle screaming, “Just relax”.
This always signalled to me someone to me nervous about his examination technique rather than a genuine appreciation of gegenhalten and other similar phenomena.
As someone caught up in the GMC ‘class of 2006’, I have always found the concept of ‘resilience’ somewhat baffling. Rachel Clarke’s analysis of whether junior doctor training can really be likened to training in the army is both sophisticated and fascinating, as doctors invariably do not see themselves ‘in battle’ with their patients.
The word ‘resilience’, rather, I find inappropriate as it implies some regulatory frailty which is the fault of the junior doctor. Rather, in the case of a junior doctor with mental health problems, it is a feature of an extended ecosystem of lack of supportive seniors, often in a truly toxic culture, a lack of appointment of a GMC health supervisor, or a protracted regulatory regimen designed primarily to humiliate publicly its respondents, with no discernible endpoint.
The book clearly makes out how the professionalism of being a doctor completely defeats everything else. The joy of ‘take a look at this!’ for a medical student, in reference to situs inversus/dextrocardia, or a bulging palpable abdominal aorta aneursym, is wonderfully conveyed in the author’s description. None of this is, of course, captured by ‘productivity’, ‘efficiency’, or ‘innovation’ metrics.
I must admit that many of the recent episodes were immediately familiar to me, such as when Rachel and Dagan found themselves sitting at a fold-up table outside Richmond House, or that time messages from a secret group in the BMA found themselves in the public media.
The examples of the hashtags made me laugh, how the Secretary of State was unable to control all of the narrative. Nonetheless, the frustration of how the core problem of understaffing in hospital medicine had been exacerbated by deliberate cuts leading to threats in patient safety was clearly palpable like the most dilated vein Rachel Clarke has ever had to cannulate at 4 am.
And I do agree with a Twitter follower. When I come to re-read this astonishing book, I will want to do so on my iPad.
“Your life in my hands: a junior doctor’s story” Rachel Clarke, publisher Metro, July 2017.
Being a doctor, with other people’s lives in your hands, is a massive privilege.
Much like a person who receives a diagnosis of dementia, I experienced enormous relief at receiving a formal diagnosis of alcohol dependence syndrome.
For the psychiatrists, it was obvious. I was unable to stop at one drink. I would have to drink more to get the same hedonic effect. I used to drink to avoid the withdrawal symptoms.
This June was in fact the tenth year anniversary of my six week coma spent in the Royal Free ITU in a coma. It was after that I became disabled. I had been resuscitated in fact by a colleague of mine who had been at Northwick Park. I sustained both a cardiac and respiratory arrest on the same afternoon in June 2007, as well as an epileptic seizure.
It is no small thing, therefore, for me to say that I love the NHS.
I remember, however, being very ill at the time of my job in a certain London trust. It was later remarked to the GMC years later that I had ‘bloodshot eyes’ and smelt of alcohol. Curiously, that Trust never made steps to help my health at the time.
A consultant and his registrar never discussed these health issues at the time, either.
I was certainly in trouble for my life, not merely career. In 2006, I was struck off. I then spent a year in a pub with no disposable income nor job, and a sluice of hate stories in the media. My late father spent the last years of his life utterly disgraced.
I tried to rebuild my life again. I remember the GMC Fitness to Practise panel adking me in 2014 what I had learnt most from my time off the GMC Register. I explained that I finally felt I knew it what it was like to be a patient.
It had been the first thing which came into my mind. But I feel it’s very true. I remember the occupational therapists of the Albany Ward at the National Hospital for Neurology and Neurosurgery taking me on a shopping trip to the local supermarket at the Brunswick Centre near Russell Square. My job was to organise buying groceries. The day afterwards, my session was making a cup of tea.
I remember the physiotherapy sessions – also in the community. I spent hours sitting on a rubber ball, while my friends who are now consultants and professors were beginning their specialist registrar rotations. I remember tiptoeing on a mythical line, to build up my pelvic muscles too.
I then went onto do my Bachelor of Law and Master of Law. I remember going to see a Professor of law to discuss doing a possible PhD in criminal law, in the law of insanity. I remember the disappointment of me and my late father as he advised not doing a doctorate in law.
I was then unexpectedly approved by the Solicitors Regulatory Authority to complete my pre-solicitor legal training. After a 3 hour viva, shortly after my father had died, I burst into tears and they offered me a box of tissues.
When I asked one of my other Specialist Registrars last week from that London Trust, now a Consultant in London, he said I would ‘hate clinical medicine’ because of the DATIX forms ‘used as complaints at Doctors’.
When 15 years ago at this London Trust, a dose of a medicine on a drugs chart was not dispensed because I wrote the wrong date on an overnight on-call, no “root cause analysis” was ever done. Instead, it became a big event in my GMC case. Notwithstanding, I have a wholly positive attitude to learning from mistakes for patient safety even today.
I can’t eliminate all the triggers for drinking unfortunately. Stress is certainly one of them, but I managed not to relapse when my dsability benefit was recently taken away, despite being clearly disabled.
I do remember the GMC asking me what I reckoned my biggest risk factor for drinking was. I simply replied: “Complacency”.
I actually do love patients and medicine. I have just completed three books on dementia, and I am doing two further on dementia and frailty right at the minute. My first book indeed won best book of the year award in 2015 for the BMJ Awards.
In 1999, I published a seminal contribution in dementia in the world. But I would be ineligible for jobs in academic dementia because I don’t have a ‘strong history’ of raising money in grants.
There are two schools of thought about people with mental illness becoming psychiatrrists in training – ranging from terrible to excellent.
But I would like to give this a go, flexibly, part-time, in an enjoyable environment.
My addiction psychiatrist, whom I adore, once warned me, “Shibley, you’re like one of these people who likes watching his favourite film, replaying the sad ending hoping one day it will be a happy one.”
I have no wish, of course, to ‘right any wrong’. I am in awe of the medical profession. It was with much reluctance I turned up at two interviews at Freshfields and Linkaters for training contracts in the law ‘magic circle’.
Despite all I have felt about the General Medical Council, I am eternally grateful to them that I do have a second chance. I try my best to look after my elderly mum, with whom I live, but even she wants me to give it a go.
I have a great support network now. I feel relatively resilient, but as I keep saying to friends of mine with dementia: “anything can happen to anyone at any time.”