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The end of the Conservative Party is nigh. For that reason alone, I’m not bored of Brexit.



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It’s a bad start for the leading finalists in the Conservative leadership election to say that their party will be annihilated unless Brexit is ‘delivered’. Let’s face it – the implementation of Brexit by the Conservative Party, with no involvement of devolved governments or the official opposition, has been a disaster after three years. You only need to look at Jeremy Hunt and Boris Johnson to see that the Conservative Party will soon be totally unelectable for a generation.

 

Boris Johnson exudes incompetence, arrogance, faux intelligence and self-entitlement. Jeremy Hunt fraudulently pretends that his negotiation with junior doctors was a success despite being deeply traumatic unnecessarily for all parties involved.

 

Brexit will do nothing to help with knife crime, or the parlous state of social care. ‘Taking back control’ means reinforcing your borders. So it’s no surprise that Ireland wants to reinforce its border to stop non-EU goods leaking from the UK into the EU single market. Brexit will do nothing to make universal credit run more smoothly.

 

Whatever your views on the economic future of the UK after Brexit, it’s beyond any reasonable doubt that the reputational damage for the UK in terms of an influential world force for good, apart from Trump’s America, has been enormous.

 

If the UK exits the European Union with a successful negotiated settlement, it is pretty likely that the Pound will plummet further. This of course is an opportunity for short-sellers. But the benefit for the City is likely to be shortlived, if the EU denies passporting rights for transactions in London.

 

I don’t understand some voters who might want to ‘get on with it’. I liken this to someone arsoning your flat. Instead of putting out the fire, you are asking the arsonist to pour more petrol on the flames. I don’t understand why some voters have gone all silent on immigration. Maybe they know that Brexit might actually catapult an increase in brown or black faces in their local vicinity. I don’t understand why some voters are still passionate about past glories of England, when their local car plant is being shut down to be relocated to somewhere more sensible for dealing with the international supply chain,.

 

Being socialist meant to me being social. This does not mean turning our backs on, socially, politically, or economically with our EU neighbours. The pretence that Brexit can build a socialist nirvana in one country has never been tested for. It is naïve at best, and profoundly economically illiterate at worst, to think that multinational corporates can be completely obliterated from a post-Brexit UK.

 

It’s too late to honour the referendum result, unless the same parliament, with a different Prime Minister, can ‘seal the deal’ with the negotiated outcomes. This is unlikely if Labour continue to reject the deal, which they should do as it does not fulfil their original stipulated requirements of being at least as good as membership. The EU after their summer recess have no intention of re-opening the negotiation. The whole country apart from the Conservatives and Rory Stewart know that the positions of Jeremy Hunt and Boris Johnson are a pack of lies.

 

The only way forward is for Labour to decide on whether it wants to renegotiate a settlement (to which the EU would have to agree) or whether it simply wishes to end this stressful madness by revoking Article 50.

 

David Cameron’s ‘holding operation’ of an EU referendum has stunningly backfired. If Labour is unable to get a majority in the general election, to work with the Greens, SNP or Liberal Democrats, and to form a coalition of sorts will have to adopt a pro-EU position. These facts need to be stated clearly ahead of any general election it wishes to participate in, unless it is Labour’s intention to scoop up votes to form a coalition with the Brexit Party.

 

If Labour were to take a pro-EU stance, if the EU can’t renegotiate the settlement, it’s my genuine belief that the Conservatives will be out of power for a generation.

 

And, if so, good riddance to them.

 

@dr_shibley

Time for the discussion of Brexit to get beyond hashtags and internal bickering



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The fireworks, after Sadiq Khan’s recent display, have certainly been impressive, with the likes of Roger Helmer foaming and frothing at the mouth. I am happy with what the current leadership of Labour has achieved. I have no intention of ‘smearing’ members of Labour. I would dearly love to see a Labour government. But it is an inescapable fact that there is, in fact, no version of Brexit that will satisfy both ardent supporters of Brexit and citizens of the UK who want to remain members of the European Union. If a further referendum is held, the possibility is that whichever side wins won’t win by that much of a margin. If ‘leave’ win, the words ‘be careful what you wish for’ will come back to haunt many. Many of the people who want a People’s Vote want ‘Remain’ to win, and simply wish to hold a referendum to maintain the importance of ‘democracy’. But democracy would possibly mean the UK could bring back capital punishment. Brexit as a solution to all the problems caused by neoliberal capitalism including austerity is a false, fraudulent prospectus. Attacks on ‘Blairites’ are in my view utterly irrelevant now to getting Labour into a position to form the next Government; this does not mean I am a ‘Blairite’, and such a lazy attack would be yet another dead cat.

 

There are some people who are determined to make this all about Jeremy Corbyn. I voted for Jeremy Corbyn twice, as I wanted stability in the Labour Party. I think though the obsession with him has become insufferable, including people who spend all the time flooding my Twitter timeline with plans for “Twitterstorms”. The perception is that Jeremy Corbyn has become more obsessed with getting into Number 10, rather than sorting out other desperate problems within his party, including Brexit. There’s an argument that ‘conference had decided’ that there would be a “people’s vote”, and failing that there would be a general election. However, events have been evolving fast.  The Labour position is deeply unconvincing, and, whilst Jeremy Corbyn’s position ‘has not changed’, the notion that it will be able to negotiate successfully a solution to Brexit, the unicorn approach, is deeply unconvincing. This is nothing to do with my views of Barry Gardiner. The nature of the debate has become extremely toxic, with callers to local radio here in London referring to ‘illegal immigrants’ who can be shown not to be telling the truth with bone marrow aspirates diagnosing to the year their biological age, or “strapping Sadiq Khan” to a Catherine wheel (like yesterday).

The leader of the Conservative Party has had her position consolidated as a result of the failed ambush by the ERG. The only event which is likely to happen is that preparations are being made for the Theresa May negotiated agreement with the European Union to be rejected by parliament. In which case, a central plank of Government’s policy will fall, and it could be then that Labour is saving itself for a ‘no confidence’ vote in the Government, having previously precipitated a no confidence vote in the Prime Minister personally. Brexit has already proven to be a ‘financial opportunity’ for those sympathetic to the views or personnel of this Government, including problematic private companies taking on substantial financial transactions in commercial transactions extracting money from the State to fund their shareholder dividends. This is classic privatisation. The worst is yet to come, of course, with ‘patriotic’ Conservatives short-selling the currency, so betting on its demise, to make millions.

 

This is of course a far cry for why certain might have voted to ‘leave’ the European Union. It is speculation why exactly they believed a position which was impossible to negotiate bilaterally, given the sheer torrent of lies told by Nigel Farage, David Davis, Dominic Raab, Boris Johnson, and their ilk. But the potent ‘taking back control’ did tap into a rump of voters who felt as if the economy had not been working for them, by immigrants under-cutting their wages, and themselves adding to pressures on state-run services, inter alia. Many such voters, many of whom were also Labour voters, do not agree with the nationalism of some members of local clubs. The narrative had emerged that the UK can make a success on its own.

 

It is, however, important to remember that this mess should be owned by the Conservatives. This means that the failure of Brexit must be owned by the Conservatives. It is all very well for Theresa May to ask for no arguments and reconciliation, but she was the one who took her toys home two years ago and produced a deeply divisive partisan strategy for conducting the negotiations on behalf of the country with the European Union. The European Union cannot be blamed for their agreed settlement.  If parliament votes it down, it should not be allowed to allow ‘no deal’ to be shoo-horned through, especially since the country is totally unprepared for it. The only people who are prepared are the ones about to receive privatised contracts from friends in the Government, or people ‘betting’ in the City.  They have no interest in the destruction of the UK, including what happens to the NHS and social care. This is a betrayal of a phenomenal scale, and the Labour Party should keep a safe distance so it is not implicated in causing this disaster. The ‘shock’ of a no deal is of course will be exactly the sort of climate where the ERG or those in the ‘hard left’ can see themselves flourishing. It might even be a tempting climate for ‘Lexit’ to take root, but I don’t believe Lexit provides a solution either economically or socially, definitely not politically, to Brexit.

 

The only solution for me is for Labour to campaign on a platform in any general election to go back to the European Union, and to argue not only for a seat at the table of an influential trading bloc, but to ‘remain and reform’. I understand how tempting it might be for the UK to ‘go it alone’ and get contracts with Russia or China, but it is in reality hard to say that this would be easily possible. Having been a devotee of Tony Benn, and read all his diaries more than once, I am sympathetic to the Bennite view. But that’s where it ends.  I think we can no longer within Labour waste any more time thinking Twitter arguments. There is an economic crisis to avert, but there’s more to Labour than a new radical model of economics even. Brexit will be more of a threat to welfare and social care, and the NHS, than even austerity has been, and there will certainly be no finality to the repercussions for Brexit for many years to come. It’s time for the ‘membership’ of Labour Party to stop thinking about Twitter campaigns, stop speaking to themselves, and put the country first.

 

@dr_shibley

Sticks and stones may break my bones



I had first become interested in the language surrounding dementia in 2014, when I presented a poster on the G8 pitch, at the Alzheimer’s Europe conference in Glasgow.

At that point, I realised that sticks and stones could break my bones, but words could hurt me.

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I have long since not attended any national or international conferences, not simply because I found the same topics being discussed in perpetuity, but because I felt the conferences were for an in-house cliques who were far more into massaging their own egos and putting themselves up in flash hotels than the reality of dementia.

But I later returned to the issue of language, in relation to stigma, in my second book on dementia ‘Living better with dementia’ published in 2015 by Jessica Kingsley Publishers. As my own mother lives with me, and as her dementia advances, I’ve genuinely found my own book to be a source of information and support. For example, only last night I was reading up on my own thoughts of the ‘sweet tooth’ in dementia and the neuroscientific evidence for why it occurs. Latterly, I’ve toyed with the idea of writing a cookbook for unpaid carers, living with limited resources including scarce money and time, of people living with dementia. I would love to work with someone who’s interested in this specialist field, such as a nutritionist or dietician, to help me.

I became physically disabled in 2007 after more than a month unconscious on the intensive care unit of a local hospital, where I was invasively monitored for acute meningitis. Although I subsequently read Goffman on stigma about a decade later, I had the misfortune to experience stigma first-hand. The sense of ‘otherness’ is something you experience if you’re in a wheelchair, and a London cab refuses to stop despite the cab having its yellow light on. Of course, I had direct experiences of ‘otherness’ as other medical professionals disowned and excluded me when I needed help the most – both in my alcoholism and in recovery. I am currently doing professional dilemma questions, and the knowledge that senior clinical people I worked with turned a blind eye, or did not know what to do and did not admit it, to my illness still frightens me.

As a result of this, I have a low threshold to calling out ‘otherness’, that is where you define people as different to you, and, more than than that, try to discredit them. This might include supporters of Brexit or not, Jewish or Muslim citizens or not, or even living with a long term condition. I don’t think the key to destigmatising stigma is by segregating people. At worst, this might include the ghettoization of people with dementia or mild cognitive impairment such that they all safely live in the same ‘dementia village’, to all intents and purposes ‘out of sight’ and ‘out of mind’. Care homes used to be criticised, by some, for potentially warehousing individuals if the prescription of chemical or physical restraints was frequently abused, similarly. This is not real integration and inclusion, in other awards appreciating the diversity of individuals, but actually lumping all people together with the same label.

For example, in ‘dementia friendly communities’, we don’t acknowledge individuals have different qualia of cognitive impairments, in memory, language or whatever, at various degrees of severity. We don’t discuss how the social determinants of health impact on the health and wellbeing of people, such as poverty or the shutting of day centres. We just clump all people together as ‘dementia’. This is not a million miles off of creating vast groups comprising unique individuals, such as ‘learning disabilities’ or ‘the elderly’.

Whilst the counter-argument is that identification of these groups of people means that their needs can be serviced, often the opposite is true. Recently, a paper has been published on identifying the most ‘frail’ people so that we can be aware that they are the most intense in resource allocation. But think about this carefully. This can mean that we use the information to discriminate actively against the most vulnerable – ‘equity’ and ‘justice’ are not necessarily compatible ethically.

Above all, I am scared how language is used to legitimise discrimination, ‘otherness’ and to embolden other people’s vulnerabilities and weaknesses.

I did a brief scan of some ‘offending’ words, and I compiled them into a table.

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I have been much derided for talking about “assets” and “strengths” as well as “deficits”. For example, one person commenting on a piece I wrote in the Guardian remarked similar to, “We don’t need to worry about this patient lying on the operating theatre table with advanced pancreatic cancer. She has great teeth.

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But I strongly believe that it is not difficult to slip into the patronising ‘does he take sugar mentality?’ I don’t wish to turn the medico-legal concept of ‘paternalism’ into a “dirty word”, but, as for our experiences with individuals with special needs, it is a slippery slope to outright dehumanisation and depersonalisation.

I never really understood what it was like to lose your sight until I went blind in one eye last year – but this was surgically operated upon with success. Likewise, I think many of us think we won’t be the ones who get diagnosed with cancer or dementia. But the law of averages means that some of us will be.

And we should think about how “we” would feel if “other people” talked about “us” like that.

@dr_shibley

The morality of dementia ‘awareness’ while imposing swingeing cuts



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The actual reality has been bleak, apart for those for whom ‘dementia awareness’ pays off their mortgages.

In September 2018, the Guardian featured an article on the cuts to social care:

“Nearly all the austerity-era funding cuts to services supporting poor families have fallen in the most economically-deprived areas of England, potentially trapping them in a “downward spiral” of poverty, according to new research. Council areas in the north and Midlands, together with a handful of local authorities in London, have shouldered 97% of the reductions in town hall spending on working age social care, looked-after children and homelessness since 2011, the study says.”

The cost of the ‘Dementia Friends’ programme was always eye watering.

As this press release from 2012 provided,

“Launched the £2.4 million programme, led by Alzheimer’s Society and funded by the Cabinet Office and the Department of Health, to deliver the nation’s biggest ever call to action on dementia to create one million Dementia Friends by 2015.”

I still have deep reservations about ‘cloning’ millions of people to be ‘aware’ of dementia in such a pre-scripted formulaic way.

Take for example this script of how to conduct a ‘Dementia Friends’ information session which can be easily found on the internet. The approach leaves little room for any creativity and innovation by local people to promote awareness of dementia. If there are about 900,000 people in the UK with dementia, you would have thought that they would have had their own personal views of dementia they’d like to share.

But the truth is – this was a massive marketing exercise for the Alzheimer’s Society, with deeply unpleasant political motives. Dementia Friends was never delivered in a genuinely organic way as a social movement. A huge amount of money was put into ‘marketing dementia’ as this press release reveals. There was never any “empathy” as this recent piece from the Harvard Business Review on the topic of change suggested.

In all the intervening years, there has never been an independent report on the return of investment of this programme, despite many many calls for such an analysis of whether the millions of pounds invested ever had any return socially or otherwise.

Take for example the aims of the “marketing programme”:

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What have been the tangible results of this? Do the public think or feel any differently about dementia? Has there been a greater sense of social connectedness between people with dementia, carers and others, despite the drastic cuts imposed through austerity in government policy? Has there been any significant upskilling of the workforce in health and social care in dementia?

What ‘dementia friendly’ means has always remained elusive.

It’s even to me, the full carer of a wonderful person – a mum who happens to live with dementia and who requires now full-time care.

It has never convincingly been presented as anything other than a better ‘customer experience’.

Take for example this claim from quite early on:

“When the dementia friends scheme was still in the planning stages, the aim was announced of signing up 200,000 people who, by doing so, would be making a pledge to become ‘dementia-friendly’ contact points for customers they encounter who are living with the condition. With the number of employees having confirmed their support already surpassing 400,000, however, it is clear that the programme is set to be a big success across the country.”

The five core messages of ‘Dementia Friends’ are not beyond reproach either.

Dementia is not a natural part of ageing.
Dementia is caused by diseases of the brain.
Dementia is not just about losing your memory.
It is possible to live well with dementia.
There is more to the person than the dementia.

As you get older, you have an increased chance of developing dementia. With the drive for dementia diagnoses, there has inevitably been more people who have misdiagnosed with dementia when in fact they did have ‘normal ageing’. We know dementia is caused by diseases of the brain, and it is not just about losing your memory – but it would have been sensible at this point to give a brief explanation of the other types of dementia, particularly for those below the age of 65. It’s simply not good enough to say ‘it’s not just memory’. I would never say, as a complete explanation, a ‘supermarket is not simply a delicatessen counter’. That statement provides no information about what a supermarket actually is. Likewise, the statements are consistently half-truths. It is, I am sure, possible to live well with dementia, but it’s also possible for the person with dementia and carer (and others) to suffer enormously, with the emotional pain of not recognising familiar people, not being able to do simple tasks like writing a cheque and so on.

There is more to the person than the dementia is a hollow campaigning slogan when delivered by advocates and charities who relentlessly do not embrace the issue of other social determinants of health, nor indeed any other comorbidities, but want everything to be viewed through the dementia campaigning focus. For example, a simple irregularity is the issue that dementia-friendly communities or behaviour should be friendly to all, unless you genuinely believe that people with dementia are sufficiently homogenous and do not live with any other diversity in their diagnosis or social determinants of health?

Currently, there are nearly 3 million ‘Dementia Friends’.

And my genuine reaction is “So what?”

 

 

@dr_shibley

 

three amigos

Why I think Labour is wrong over Brexit


December 2, 2018 8:15 pm / Leave a Comment


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This has got absolutely nothing to do with the Iraq War or Tony Blair. The background to this for me is personally relevant. I’ve voted Labour all my life – in other words, at every general election since 1992. I voted for Jeremy Corbyn twice as leader of our party, so let me indulge you on why I think Labour has to tread very carefully now.

 

The likelihood is that the main motion on December 11th, the Government and European Union proposal, will not be accepted. This defeat means that Labour will deliver on a promise for a ‘no confidence’ motion. And the likelihood is that even despondent Tory MPs, with no obvious successor in sight, will not want to inflict a defeat in that no confidence motion. We already know that the DUP, despite their reservations over the EU/UK proposal, intend to support the Conservative Government. So, as for Jeremy Corbyn’s challenges, this might end up consolidating and reinforcing Theresa May’s position as the Prime Minister.

 

These events won’t make the problem of the European Union exit disappear. The clock is still ticking on the UK’s exit. The position that would be, however, that the UK parliament will have rejected the mutually agreed terms for departure. The departure of the UK was always presented by Brextremists as being entirely on the UK’s terms, well Little England’s terms actually. The reality is that the agreement legally will need to show consideration, and will need to be bilateral with an intention to produce a meaningful arrangement.

 

The absence of a deal, or ‘crashing out’ of the European Union, would be disastrous on a number of fronts, ranging from medicines to airports. But with a lack of instant agreement on WTO processes, we would not be able to sell our products with agreed standards abroad. That is one of the biggest problems, aside from other major problems such as the lack of radionuclides for urgent cancer treatment.

 

It cannot be forgotten also that the EU has been incredibly patient and accommodating with the UK government, and themselves have earned a ‘good deal’ by all reasonable measures. So, they’ve run of patient a long time ago, but they want this all settled now. This means that they have already stated categorically that they don’t want a renegotiation, and this is unlikely to change with a change of government. It would, however, be useful if the EU could state their position on this now.

 

One of the former heads of the civil service of the UK government has said it would take at least 7 months to sort out the logistics of a people’s vote. We’d have to agree the question too.

 

I think socially, economically and politically, now that we know on what terms the UK would depart from the EU, different from when the original ‘will of the people’ was measured, it would be a disaster to exit the European Union.

 

People make mistakes, and, as a surrogate phenotype, UKIP won’t care as they are changing in public into their BNP clothes. The Conservatives are admired for their control of their economy (which I disagree with). Labour is not. Lexit is also a deeply deceptive construct, as it is always possible that exceptions can be carved out for public services for the UK. The EU didn’t make us legislate for competitive tendering in NHS services in section 75 in the Health and Social Care Act 2012. The guff about state aid and greater public investment as a result of Lexit are so false it belongs on the side of a bus.

 

A lot of the problems in our country have been entirely self-inflicted by the domestic governments, such as welfare reforms including universal credit and the ‘Bedroom Tax’. These have been nothing to do with Brussels. At the risk of re-running the refererendum campaign, Jeremy Corbyn can legislate for his socialist nirvana for all, promoting equality, fairness and social justice, even if the UK remains part of the EU.

 

The Conservatives are also admired for their decisiveness. Whilst Barry Gardiner will deny he has vassilated from warning against a ‘vassal state’ to embracing the ‘will of the people’, it all is beginning to look a bit false and hollow from Labour. I agree they need to win an election to get anything done, but, if they willingly want to give a vote to people knowing that the UK could tank in the process, I don’t believe they can be supported.

 

@dr_shibley

 

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The GMC needs to get its house in order, before it starts lecturing others


August 16, 2018 9:23 pm / Leave a Comment


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I still personally find the death of Jack Adcock devastating.  The reason for this is that I know how stressful it can be to be a carer experiencing the NHS, and my own cousin lives with Down’s syndrome.

 

Anyway – we can all agree that the BBC and GMC are both “national treasures”.

 

No – that didn’t quite sound right.

 

Both the BBC and GMC are funded from members of the public and all Doctors akin to taxation. They both misuse public funds to go on witch-hunts, and court popularity in doing so. And they both act as if they are above the law.

 

We live in a democracy, where freedom of expression is cherished, even though under no interpretation can GMC cases be seen as ‘entertainment’ from the BBC.

 

Patient campaigners have long warned about ‘cover ups’.  But they indeed strangely disappointed when the Court of Appeal judged in favour of Dr Hadiza Bawa-Garba. To rule in the GMC’s failure, erasing her from the GMC medical register, would have led to the most enormous of cover-ups.

 

“Nothing to see here”.

 

It is easy to underestimate how truly appalling the monitoring of Dr Hadiza Bawa-Garba was, with numerous postgraduate qualifications in the difficult discipline of paediatrics. The differential diagnosis of a child who is clearly not himself is huge. The full power of the media were able to whip up the narrative of a Nigerian doctor committed an offence ‘against one of us’. That is the most alarming aspect of the whole business, along with how racially biased fitness-to-practise cases are in front of the GMC.

 

This was never about #BawaGarba in a way, but as they say in the latest Mission Impossible film, ‘everybody was expected to play their part’. #TeamHadiza surprisingly paid a big part by crowdfunding a massive cover-up by the GMC into discussing system factors in healthcare.

 

This week, I revisited a postgraduate medical course which I had last done in 2002, before a monumental cover-up into how sick I was was effected. I nearly lost my life in 2006, but I live to tell the tale (just, despite the cardiac arrest.)

 

In that course, many Doctors had told me about very sick patients they’ve had to face, obviously without breaking any confidentiality, and how medicine is not always entirely predictable or an exact science. You could give a therapy that could worsen the actual diagnosis, because the details of the actual diagnosis have not revealed themselves yet. Learning not blaming is critical for this.

 

On Twitter only today, I was told by a member of the general public that dementia is a normal part of ageing. That is, however, fake news, and it is hard to deny that there exists an information asymmetry between doctors and patients.

 

Suddenly, many patients became experts on how easy it was to diagnose sepsis.

 

Think to yourself about a thought experiment. Imagine if the details of the Bawa Garba case had been anonymised, so that you knew nothing about her identity. Pretend it’s like judging a paper for peer-review. Now imagine that it could never have been reported upon in the media, identifying the person.

 

Would this have altered the balance of ‘public interest’ or ‘interesting to the public’? I believe so certainly.

 

“Public confidence” cannot be measured accurately if the regulator depends on the Daily Mail’s readership for support, I feel.

 

Bawa Garba was given the same degree of knee-jerk hostility as Cliff Richard, with both parties knowing very little about the facts mostly.

 

And they’ve both had to pick up the pieces, with a few people conveniently forgetting that they would require rehabilitation.

 

One could argue that they are both indispensable, after all, depending on how much you ‘like’ them.

 

We need to have a debate about “human factors”, or whether ‘medical manslaughter’ needs to be better defined where the dividing line between risk and uncertainty is sometimes blurred.

 

We need to have that debate urgently on ‘learn not blame’. The GMC admits it ‘got it wrong’. A concession is that it does not intend to appeal the Court of Appeal judgment at the Supreme Court. The GMC could perhaps use the money, and its statutory duty in medical education, to improve yet further the clinical skills of this Consultant to be.

 

I strongly feel the regulator misused its power, and, if you’re talking about accountability, I think Charlie Massey ought to resign as he hasn’t ‘raised a difficult issue’ in a helpful way, but actually has done a considerable amount to decrease confidence in the medical profession. But everyone makes mistakes, even the GMC, even if ‘sorry’ is the hardest word for it.

voices

Ticking boxes and snazzy campaigns won’t be sufficient to improve ‘dementia rights’


May 31, 2018 5:50 pm / Leave a Comment


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Cited in a OECD report, it is reported that half of all people with dementia may have experienced verbal, physical or psychological abuse or neglect at some point.

 

We feel strongly that the discussion of ‘dementia rights’ is very serious, and far too important to be left to marketing leaflets.

 

Dementia rights affect many people, such as carers or care home managers, but not least people living with dementia themselves.

 

And yet it sometimes feels as if ‘dementia rights’ have primarily been interpreted according to the needs of the people other than those living themselves with dementia.  And, disturbingly, there is no distinction between ‘consumer rights’ and other rights.

 

A wider of range of people should be involved in the future discussions of rights. There are burning issues to discuss, such as glaring inconsistencies in current law. What about those who have agreed to hospital admission, or at least show no signs of objecting to it, but who may still be deprived of their liberty in various ways – for example residing in a locked ward?

 

We know in theory that every effort should be made to prevent the need to deprive someone of their liberty. It must be used for the minimum time possible. The legislation is supposed to protect vulnerable people. But why the perpetual schism between rhetoric and reality?

 

The English Law Commission’s own recent report“372 Mental capacity and deprivation of liberty” noted that:

 

It is concerning that people often do not feel safe, treated with dignity or that their human rights are respected whilst detained.”

 

Dignity is an essential intrinsic part of human rights law. It is not merely an ‘adjunct’.

 

In response to the war’s atrocities, the UN’s universal declaration of rights in 1948 provided that “all human beings are born free and equal in dignity and rights” under its article 1.

 

But Catherine Dupré comments:

 

Protecting and defining dignity through human rights law is not always a straightforward business, especially because it often raises, in the words of the European court of human rights, a question of civilisation.”

 

It is critical now that we have an inclusive, wide-ranging debate, about how to progress. For example, an independent reviewhas set up for England and Wales, led by Professor Sir Simon Wessely, to look not just at our mental health laws, but also how they interact with services, good practice and the wider care system.

 

We must concede that changing legislation alone will not be enough to improve the lives of people affected by dementia, but, still arguably, a wider range of people with dementia and care partners should still have a seat at the table while this legislation is being changed.

 

In the “competence model”, a patient with dementia might be deemed incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient.

 

But this does not appear consistent with article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD).

 

It seems that CRPD article 12 makes it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired mental decision-making capacity and requires the replacement of all regimes of substitute decision-making by “supported decision-making”.

 

The crucial difference is, therefore, that the “UNCRPD states that everyone with a disability should enjoy legal capacity on an equal basis with others in all aspects of life.”

 

Whatever local focus groups and tick-box “engagement meetings” take place, it is essential we have a thorough discussionof ‘dementia rights’ including specialists in law and dementia care, especially when so much is at stake. This is especially important as there are so many valid voices and actors in the ‘civil society’.

 

As the experience of Dementia Alliance Internationalshows, “nothing about us without all of usneeds to be more than a slogan.

 

@dr_shibley

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Delirium. Why so little and so late?


March 4, 2018 8:37 pm / Leave a Comment


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My most recent experience of delirium was truly terrifying, to the point that, as a care partner of a close relative with dementia experiencing delirium, I felt I needed counselling about this admission to a London teaching hospital. I have witnessed delirium ‘around the clock’ for half a month so far.

Delirium is not for me a matter of Twitter hashtags, gimmicks or infograms, but a very serious issue I wish to be taken much more seriously. Traditionalists in neurology, for example in the tradition of Gall or Broca, pride themselves on localisation of function – in other words a particular constellation of signs will tell you where the lesion is. But this reason for me is insufficient why academic neurologists and psychiatrists should be disinterested in delirium. Where for example is the research which explains the neural substrates of hypoactive and hyperactive delirium? How long do ‘sleep episodes’ last for? Is it a good idea to wake someone up while he is sleeping? Are there are any neuroprotective agents which prevent long term deterioration after delirium? How much of the delirium will the person experiencing it actually remember?

In a paper by Profs. John Young and Sharon Inouye, the following case scenario is presented:

“An elderly man is recovering from a heart attack and seems to want to lie in bed. He is polite when approached, but sleepy, and he doesn’t seem interested in eating or drinking. Sometimes his speech is incoherent and he doesn’t seem to follow what is said to him.”

Yet this is virtually a carbon copy of the state of my relative when discharged under ‘discharge to assess’. The relative, who also could not mobilise at all (due to the delirium and viral pneumonia), was unmanageable for me at home. I live with her, and unfortunately she had to boomerang bang into the same hospital three days after being discharged ‘medically fit for discharge’. As it happens, for virtually all of the nineteen-day hospital re-admission, many factors conspired to ensure my relative stayed bed-bound, totally unusual for her. It was with a very heavy heart that I decided to call ‘999’, as the hospital environment itself often precipitates or exacerbates episodes of delirium..

The diagnosis at that stage was hypoactive delirium, although the picture became more mixed in the subsequent few days. My relative was admitted, and thought to have a respiratory tract infection, constipation and dehydration. She also lives with frailty and dementia.

It is claimed that, ‘for the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan’,  but I felt all three were lacking in this admission. Nobody told me about what to expect in the delirium, or offered me any support for my distress.

If you read the page on “Dementia UK” website about delirium, you are offered the following advice:

“keep calm and reassure the person”

A different HCA in the bay every day and every night is not reassuring.

“observe the person to see if they are in any pain”

The paracetamol was written up prn. My relative could not remember if she was in pain, and none of the nursing staff asked me as her full-time carer if she was in pain.

“avoid too much stimulation”

the ward had a noisy bleeping air mattress which was bleeping all the time, and at night the lights were often bright.

“if possible offer them drinks to maintain hydration”

this simply didn’t happen

Whilst my own regulator,  the General Medical Council, takes heavy criticism on a daily basis, I can frankly say that the GMC code on communication (“Communicate effectively” in “Duties of a Doctor”) was flatly ignored in my relative’s admission:

31. You must listen to patients, take account of their views, and respond honestly to their questions.

32. You must give patients he information they want or need to know in a way they can understand. You should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.

33. You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.

34. When you are on duty you must be readily accessible to patients and colleagues seeking information, advice or support.”

John’s Campaign, for me, has to be more than allowing care partners to sit by patients’ beds for longer than a few hours. To make delirium management work, care partners, where available, should be fully involved. I was not asked once by clinician how my relative’s function had dropped off a cliff, nor indeed what she was capable of doing prior to admission.

For me, the initial ‘head rush’ of my relative was astonishing – she was agitated with a blood pressure of 200/110. I subsequently discovered that high levels of cortisol had been suggested to be associated with acute stress in precipitating and/or sustaining delirium. (Neuroimmunomodulation. 2005;12:60–66).

Of course, I agree with letting the treating physicians to ‘get on with it’, but it was staggering how none of the rationalisation of the medications was ever communicated with me (including the discontinuation of the cholinesterase inhibitor). The cholinergic system has a key role in cognition and attention, and it is not surprising, therefore, that there is some evidence to support a role for cholinergic deficiency in delirium. For example, anticholinergic drugs can induce delirium and often contribute substantially to the delirium seen in hospitalized patients, and cholinergic deficiency is commonly implicated in the pathophysiology of delirium.

Bidzan and Bidzan (2012) have described a 62-year-old female diagnosed with Alzheimer’s disease, who on sudden discontinuation of donepezi experienced a worsening of the dementia symptoms, culminating in delirium. When donepezil was re-prescribed, the delirium resolved and the patient’s mental state stabilised. I would also find lorazepam and midazolam prescribed to my relative, without any communication with us, when it is believed by some that these can actively worsen delirium.

None of the following points from ‘Concise guidance to good practice’ from the Royal College of Physicians of London on delirium (2006) were followed in the course of my relative’s hospital admission.

“A history from a relative or carer about the onset and course of the confusion is essential to help distinguish between delirium and dementia
Patients at high risk should be identified at admission and prevention strategies incorporatedinto their care plan
Many patients with delirium are unable to provide an accurate history. Wherever possible, corroboration should be sought from the carer, general practitioner or any source with good knowledge of them.
The patient should be nursed in a good sensory environment and with a reality orientation approach, and with involvement of the multidisciplinary team.

Keep the use of sedatives and major tranquillisers to a minimum.
Review all medication at least every 24 hours.
Senior doctors and nurses should ensure that doctors in training and nurses are able torecognise and treat delirium.”

I feel that non-pharmacological strategies are the first-line treatments for all patients with delirium, and yet as a care partner I was offered absolutely no help with this. I was not encouraged over any reorientation and behavioral intervention, or advised on pretty standard advice such as using clear instructions and make frequent eye contact.

The hospital bed itself had a bed rail. But it is advised that, “physical restraints should be avoided because they lead to decreased mobility, increased agitation, greater risk of injury, and prolongation of delirium.”

As the ultimate insult, the hospital in question refused to talk to me about my experience of the admission as part of their ‘Friends and Family’ feedback, only because the relative in question had limited memory of the actual admission itself.

As a medical student,  I thought of delirium as a list of causes, and, even as a foundation doctor, I had little experience of it. But I do feel now it should no longer remain in the blindspot of some doctors, particularly as the experience was so distressing for me.

phtoo of food away from patient

Carers have to be valued, not treated as an inconvenience


February 25, 2018 9:28 pm / Leave a Comment


 

phtoo of food away from patient

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think before a physician comes to the conclusion that his or her patient has had ‘an acute deterioration of dementia’, he or she should make some effort to get a clear history of the time scale of events.

 

It amazed me how I was not asked at the Royal Free by any of the admitting physicians what the timescale of my mum’s decline in communication, behaviour or mobility had been. This was not a focal problem in the acute assessment and treatment area, but has been throughout the ten day admission so far.

 

I genuinely do wonder how useful, if at all, junior doctors are in the daily ward round of my mum with delirium, on a background of dementia. A message to you all – it is not a big success to say that my mum’s chest is clear, and proclaim she is medically fit for discharge, when she has been stuck in bed for the whole admission, her food and drink intake has fallen off a cliff, and she occasionally talks complete mumbo jumbo.

 

The ward round model is totally unsuited for managing delirium. The junior doctors do not involve the carers in any sort of history, and nor do any of the staff on the ward. There is absolutely no discussion of the management, including calming techniques if your mum happens to be agitated, the avoidance of chemical or physical restraints, orientation in time and place, and sleep hygiene, for example. No discussion at all.

 

It’s almost as if delirium was never taught at medical school to any of the staff in the hospital. To be honest, I have been totally amazed how my mum, who had suddenly fallen asleep during the middle of the day with hypoactive delirium, would have ‘nothing wrong’ in the eyes of the healthcare assistants.

 

It’s not enough to give carers passports, although that helps a lot. Carers need to be there to be as far as possible  on the ward round, to know what medications have been crossed off without the patients’ or family’s knowledge, to know what the rough plan is, and to be able to ask questions.

 

It’s often the case that healthcare assistants aren’t able to feed patients with dementia. The reason for this is that it’s not just the actual food which counts, although that’s a big part of it, but also the entire mealtime environment, including how comfortable the patient feels about eating the often dire hospital food. And often the food is dumped miles away from the patient.

 

And if, like mum, her mobility and independence had relatively suddenly dropped off a cliff, the therapists need to know this. I’ve had absolutely no discussion or goals set by the therapists of what they hope to do with mum. Mum is a frail lady who has experienced a number of shocks, viz change of environment, weight loss, delirium, dementia, infection, dehydration, and there’s been no discussion of her frailty despite this apparently being a priority of the NHS.

 

There has been no discussion of her management of dementia, with her cholinesterase inhibitor having been crossed off, nor her wider needs beyond discharge. The whole thing is entirely pitiful, as if the two long term conditions my mum has been living with in the community are entirely irrelevant to this hospital admission.

 

And her meds for osteoporosis have been crossed off. And for her high blood pressure.

 

I have often thought that doctors don’t want to communicate with carers there, often because they don’t want them interfering with their ill-informed medical plans. This is hugely insulting to those of us who are 24/7 trying our best for our loved ones.

 

It’s not just about having a dementia friendly clock, or reminiscence room. Carers have to be valued, not treated as an inconvenience.

 

@dr_shibley

Doctor-God

Why might there be a divide between patients and doctors?


February 25, 2018 12:14 pm / Leave a Comment


Doctor-God

 

The case against Bawa Garba (“Bawa Garba”) has thrown up some fairly strong opinions from people who support Bawa Garba and from those who don’t.

 

The feelings on the social media seem to have ignited some long-held views about whether the medical profession is working with patients, or simply against.

 

All opinions lie on a range, and some of the opinions lie at an extreme, such as the notion that doctors regularly lie and cover up.

 

Much of the discussion on Twitter seems to refer to some power imbalance, but it is the case that all regulated medical professions on Twitter run the danger of being reported to the regulator if their behaviour is called into question. The vast majority of registered doctors, one assumes, does not want to be abusive to any patients, who are not even their own.

 

The idea that registered doctors regularly cover up their mistakes is a conclusion from the admissions on Twitter that doctors regularly make mistakes and also that doctors are not regularly reporting themselves or others to any regulator about their mistakes.

 

I feel the question of what actually is a ‘mistake’ or error needs some airing too, however. We accept that there is a range of errors, some which do not cause any substantial harm to decisions which are outright dangerous. The word ‘mistake’ itself is binary, but it does often take a judgment from peers as to whether a pattern of decision-making was clearly abnormal.

 

No two doctors will always make the same clinical decisions, and even specialists working in exactly the same field might have differing views about the direction in which to take their patients.

 

But the binary nature of ‘doctor’ and ‘patient’ is at once called out when one realises that many doctors are themselves patients or doctors, so have direct experience of what it’s like on the other side of the fence. Admittedly, most doctors have to switch off emotionally about their patients to protect themselves from going into an emotional meltdown.

 

This defensive mechanism of not becoming too close to your patients lies in conflict with the democratisation of opinions on Twitter. It would be wrong to feel that all opinions, however, have exactly the same merit. For example, even the most ferocious denial of the Holocaust will fall down.

 

The information asymmetry between doctors and patients has long existed, and it is probably right that tensions between doctors and patients have resurfaced following Bawa Garba. Some patients will feel strongly that the diagnoses or management plans from their doctors are palpably wrong, given what they might have learnt elsewhere from other sources, and feel powerless to speak out.

 

The powerlessness to speak out is rife within medicine and nursing anyway, explaining to some extent why ‘whistleblowers’ like Chris Day have such a terrible time. It’s also fair to say that the communication between doctors and patients can be horrific too. I found medications regularly crossed off and added to my mum’s prescription chart without any discussion with anyone.

 

Whilst it is lovely and fluffy to ‘believe in’ shared decision making and co-production, it is worth considering why it is so widely felt that there is a tense power dynamic between doctors and patients, epitomised by the aloofness of doctors on ward rounds who only see a snapshot of the lives of patients and carers.

 

I believe that doctors can learn a lot from patients and carers, particularly for frailty, dementia and delirium where the corroborative history is key. This is not just about a sop to visiting hours. This is actually about making the diagnosis and care plans less susceptible to failure.

 

So whether or not you feel the GMC was too ‘lenient’ with Bawa Garba is neither here nor there compared to the unresolved issues, of a perception of arrogance of some doctors by some patients, or a perception of excess victimhood by some patients in the eyes of some doctors.

 

The idea of doctors and patients being on opposite sides of the fence is entrenched by the idea of clinicians going into battle ‘on the front line’. Whilst doctors continue to make decisions on their patients albeit in a well meaning and paternalistic way, they will always be accused of playing ‘God’.

 

What’s the difference between a doctor and God? God doesn’t think he’s God.

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