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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.
I don’t think anyone could have predicted the volume of stressful, unexpected events which have happened recently.
Today is my 43rd birthday. I would’ve been born at 6 pm during the World Cup, in Glasgow. These days, when I think of Glasgow, I tend to think of Tommy Whitelaw or Sir Muir Gray.
When Sir Muir Gray was once asked by Eddie Mair what he would like to be spoken to as, the reply came “Muir’s fine. That’s my name.”
Whatever achievements other people have or don’t have, I think we should all avoid being so judgmental. I know what it is like to have your reputation demolished. Recently, I even had experience of ATOS that I don’t have any needs at all as a disabled citizen.
But it’s easy for us all to forget what is going right with the world. Even with the mudflinging about the safety of cladding in the Grenfell Tower block, the community response has been sensational.
I rang up my previous employers (pro bono) at the North Kensington Law Centre last week. They haven’t stopped for a moment. Imagine for a second having your hopes and dreams being obliterated instantly.
Whatever problems you might have, never underestimate for a second what others are dealing with in relative silence. It never ceases to amaze me what pressures and worries people harbour in total silence.
Inequality and lack of fairness can only make me angry, but, having survived a six week coma exactly ten years ago, having had a cardiac arrest, I must emphasise that the only way is to look constructively to the future.
I don’t blame people getting focused on the minutiae in their own lives, micromanaging every minute detail, but it is worth remembering that successes can disappear as quickly as they come. And so thankfully can failures.
Despite the innumerable inadequacies of my own life, I am more than aware of the remarkable kindness of certain individuals who do not need to keep busy to promote their own self-worth.
I’ve always held that anything can happen to anyone at any time, and I think that all any of us can do is to die with the minimum number of regrets possible.
We are all on a steep learning curve, however titled, qualified or experienced, and, to remind us of someone who died exactly one year ago just days before her birthday and mind, there’s a lot more which unites us than divides us.
There are key differences between Theresa May and Bridget Jones.
For a start, Jones was single for a long time. And Bridget Jones always tended to look desperate.
The Labour Party is divided on Brexit – but they’re not the only ones, and it’s not Jeremy Corbyn’s fault. My late father used to tell me that there are some people who will love you whatever you do, some people who will hate you whatever you do, and some people who will always remain indifferent. Many parliamentary Labour MPs have criticised Jeremy Corbyn so much, that further criticisms of Corbyn now over Brexit would be completely hollow. To use an analogy, they have already ‘used up their lives’.
Let me pin my nails to the mast. I am in my early 40s, and was opposed to Brexit for the purposes of the June 23rd 2016 referendum. I don’t think this makes me a ‘remoaner’. I was always a bit concerned about the domestic abuse of the UK governments in state aid rules, and this is clearly of concern with the pre-meditated drastic, severe and chronic under-funding of the National Health Service and social care. I was similarly concerned about whether the EU en bloc with the US would become embroiled in TTIP, a transatlantic trade agreement, which would make it much easier for ‘free movement of capital’ ownership of ‘our NHS’. But I am told by various loud voices that what concerned many, stereotypically outside Scotland and London, was a free movement of workers, many unskilled, undercutting ‘home grown produce’. Unfortunately, some of this genuine concern got transformed into outright racism and abuse, as can be clearly seen in some of the vitriol aimed at Gina Miller.
I get the fact that there are some Labour MPs who represent constituencies representing populations who wanted to remain in the European Union. I also get the argument that you wouldn’t want, ideally, to sell your house, and make yourself homeless, and have nowhere to go to. But the idea that we will know much of the detail of the negotiations this early on is pie in the sky on the whole. Clearly, if it were the case that the European Union demanded forced repatriation of British citizens living in Europe, there would be a strong case not to start the chain of events culminating in us leaving the European Union; but this is quite unlikely, if only we don’t have a clear idea of which EU citizens are living in the UK for a start. It is pretty likely that, in the absence of strong free trade agreements elsewhere, our domestic economy would take a big hit if the UK was not included in the EU single market, but at this point this is a prophecy, and coud be right or wrong like every single other economic prediction.
I understand the need for Labour MPs to make it public that they cannot comply with a 3-line whip set by Corbyn, when their ‘conscience’ will not allow it (and nor will their local membership). We are where we are, however. The referendum, we all know by now, was only legally advisory according to the relevant Act of parliament, but unfortunately it is also the case that the non-binding yet forceful words dropped into every letterbox in the land: “that the Government will implement whatever you decide.” The case for re-running the referendum in some form of other on account of the outright lies is weakened by the fact that every single UK election has had a big degree of lying (remember ‘no top reorganisation of the NHS’ by Cameron prior to the 2010 general election?) Whilst a referendum is not the same as an election, it was David Cameron’s decision to put the issue to a referendum in his famous Bloomberg speech to defuse grumblings in his own party. What this inevitably has done has exposed a split opinion in the country at large, and it would be nonsense to believe that the splitting of opinion is simply confined to the Labour Party.
Whatever you dislike about Jeremy Corbyn MP, for example his famous terrorist ‘friends’ remark, his arguably somewhat patronising tone in giving interviews, his dress sense, his purported lack of patriotism when singing the national anthem, Jeremy Corbyn is in no way responsible for the split within the Labour Party on Brexit. Many of his MPs represent constituencies who do not see the ‘benefits’ of immigration. Many of his MPs represent the polar opposite viewpoint. In as much as the only certainties are ‘death’ and ‘taxes’, one thing is pretty certain in that Jeremy Corbyn MP as leader of the Labour Party would be unlikely to make everyone happy on Brexit. This is not the same as the Labour Party appearing ‘confused’ on Brexit, as constantly levelled at Emily Thornberry MP in media interviews. Quite the reverse, the ‘three line whip’, if anything, is Jeremy Corbyn showing the ‘strong leadership’ or ‘real leadership’ demanded of him by Angela Eagle MP and Owen Smith MP in their failed leadership bids.
Now that the Supreme Court had decided that there is insufficient mileage in the argument that the Royal Prerogative is sufficient to trigger Article 50, a Bill predictably has been laid before parliament, longer than the Bill giving women the vote. Labour and the Conservatives, unlike the SNP and Liberal Democrats, have taken national party lines of triggering exiting from the European Union. I feel that the need for MPs to comply with national policy comes less from the convoluted arguments of Edmund Burke on delegates versus representatives, often misquoted inaccurately, but the issue that otherwise MPs would be acting as independents. There are clearly massive problems down the line, if the US Congress decide to do a trade deal with the UK massively to the detriment of the UK for the political convenience of the governing parties of the UK and US. Or, there are issues if, to gain competitive advantage, the UK feels it must lower corporation tax rates even further to stop capital migrating, say, to Ireland, turning the UK effectively into a ‘bargain basement tax haven’ was warned in unison by Keir Starmer QC MP and Jeremy Corbyn MP. It is not immediately obvious what the UK has to sell in a trade deal to the US apart from its genius – but the rich pickings that would made of the NHS is not “scaremongering” but a genuine issue which lies in the national interest.
Exiting the European Union per se is the starting gun. The current Government has previously talked about repealing the Human Rights Act (ideologically consistent with leaving the jurisdiction of the European Court of Justice). There’s no guarantee that xenophobia in some parts of the UK ‘heavily hit by immigration’ will be alleviated short of mass deportation of citizens awaiting guarantees of permanent residence, or by a ‘migration transformation fund’ promised by Labour back in 2010. There’s no guarantee that total immigration levels will fall drastically. We do, however, already know that Indian and Australian Doctors do not feel it is their duty to plug the ‘skills gap’ in the NHS, given the torrential negative perception of the NHS given by its longest serving Secretary of State, Jeremy Hunt. But it would be political suicide if Labour unilaterally came out on the side of the 52% or the 48%. We know that countries of the European Union do not see the four freedoms, in people, capital, goods, and services, as anything other than an unitary package. It’s pretty unlikely that London, even if achieved outright devolution imminently, would be allowed to gain EU passporting rights maintaining a sectoral lifeline for the City.
It’s also pretty unlikely that a small number of revolting Labour MPs, SNP MPs and Liberal Democrat MPs (#seewhatIdidthere) will be sufficient to stop the triggering of Art. 50. Jeremy Corbyn MP, meanwhile, will have to do the best with the deck of cards he’s been handed. Keir Starmer QC MP is right not to get worked up about the semantics of the hard versus soft Brexit. The approach taken by Theresa May MP is substantially one of pragmatism, even if the rhetoric and mood music are more akin sometimes to euphoric Nigel Farage. Many of us reasonably minded like-minded people (or liberal snowflakes) want to reach for the sick bag as soon as we hear about the personal relationship or special chemistry between Theresa May and Donald Trump. Likewise, Jeremy Corbyn can only try to make the best of a bad deal, but, if he is held as being downright obstructive to Brexit, all hell will break loose. I think with import inflation, the skills gap in the UK, and societal discord, Brexit will pan out to be an unmitigated disaster. But it would be wrong to blame Jeremy Corbyn for that too.
And by the way… we know what happened to Bridget Jones in the end.
This is Jeremy Corbyn MP in the Leeds Rally.
This is Owen Smith MP elsewhere.
I’m actually an academic in dementia, and the structure and function of social movements is in reality a very large part of my work. What I have read in tweets from certain Guardian journalists beggars belief, and identifies for me that they don’t know anything about social movements.
Without going into what a social movement is these days, which would be quite turgid and potentially hugely boring, it’s perhaps worth nothng what it isn’t. I’ve seen the term misapplied to a group of people buying the same product or engaging in the same project, and mass tweets about it. That’s not actually a genuine social movement – that’s “groupthink”, where much of the hard work of the marketing is done by the self-explanatory ‘bandwagon effect’.
Genuine social movements, such as the response to Dr Martin Luther King Jnr’s iconic ‘I have a dream’ speech, occur when a group of people are able to click with a certain set of issues, communicate with one another a strong sense of bonding and motivation to action on those issues, and then want to do something about those issues.
Whatever you think of ‘Momentum’, and bear in mind I’m not a member of Momentum nor even been asked to join, for the parliamentary Labour Party this ability to mobilise and organise is terrifying. You only have to look at the pictures of empty pews for sermons by Owen Smith to witness quite how embarrassing the Owen Smith campaign has become. One person to me said ‘it must be humiliating for him’.
Owen Smith MP strikes me as a hugely pleasant man, stripping away his involvement in recent events. I think to glorify the present leadership election as a ‘contest’ is hyperbolic – it is more like a wimpish dare from Owen.
I get Owen’s belief that he is following in the footsteps of Nye Bevan. But bear in mind that Nye Bevan himself got expelled from the Labour Party;
I find it quite humbling that he perceives himself as a socialist. I have often fessed up straight away about my total lack of definition about what socialism is, but I recognise it when I see it. Owen makes the right noises, such as “100% public ownership” of the NHS, but it’s what he doesn’t say which probably raises alarm bells for me the most – such as the rôle of private finance in “the new deal”, or what he would feel about free trade, multinationals and the NHS.
Yesterday I took to YouTube to watch the initial reactions to the general election victory by the Conservatives in May 2015. Labour MPs, one after another, appear shell-shocked. They genuinely believed that they could and would win with Ed Miliband?
But remember – this was also the election where the Shadow Chancellor, Ed Balls, lost his seat, and Scotland went down from 41 Labour MPs to 1.
I knew Labour wouldn’t win. I have voted Labour for 26 years. I even accidentally went to Margaret Thatcher’s last ever Question Time, a stone’s throw away from my school in London.
I am physically disabled. I felt a real disconnect with how the Labour Party in parliament went about their business – they wanted to send out the signal that they could be trusted with the economy, despite never wishing to discuss how even national debt had ballooned under Osborne 2010-5. And they appeared prepared to support the Conservatives for their plans for belt tightening, even if that meant hundreds of thousands of disabled citizens like me would lose their benefits on ‘reassessment’ or it meant that the NHS could continue with its idiotic ‘efficiency savings’.
I watched one interview given by Chuka Umunna MP where he identified the main issue as the failure of ‘aspiration’. And this was a theme which was to be used again and again by the failed Leadership candidates in 2015. You see, Labour failed to pledge to reverse the annihilation of law centres and legal aid following the Legal Aid and Sentencing and Punishment of Offenders Act 2012, meaning access to justice being strangled at the neck. This is not just failure of aspiration for me – it is a real poverty of ambition from the parliamentary Labour Party, as then was, which appeared to wish to be able to continue seamlessly with Conservative policies.
Lord Mandelson whilst coming to praise Ed Miliband also came to blame him on the Sunday Marr show after the thursday general election. He laid the blame directly at the foot of Ed Miliband rejecting New Labour. Mandelson said that this was a mistake, and Miliband should have ‘reinvigorated’ New Labour. Aside from whether you wish to do CPR on a dead corpse, I think this shows complete lack of insight and political acumen.
One thing Diane Abbott MP and Chuka Umunna MP did agree on, however, in their interviews for the BBC that week was a need for a ‘wider debate’ and for Labour now to grow as a ‘social movement’.
And whatever you think of Jeremy Corbyn – and I’m aware that some of you think he’s a misogynist, anti-Semitic, pro-terrorist bastard – he has produced a wider debate, whether that is on national infrastructure and the urgent need to build social housing, a publicly owned NHS, getting rid of PFI, cracking down at long last on aggressive tax avoidance, tackling the deep rooted problems in social care, and so on.
This could be interpreted as the Labour moving left-wards, and if imitation is the best form of flattery, Corbyn must be extremely flattered by the wholesale plagiarisation of the policies by Owen Smith MP.
The thing is – what Lord Mandelson and Blair wanted was a centre-left ‘middle of the road’ candidate who could make their type of policies, supposedly pro-growth, pro-wealth creation, pro-aspiration blah blah blah, palatable. They were not expecting Owen to wholesale copy policies which could be incontrovertibly called left wing (such as 100% public ownership of the NHS). The argument is that Labour Party will trick and dupe the country into voting for Owen, as he is the ‘acceptable face of Corbynism’, but I think this is yet another example of the Labour Party PLP treating the general public like idiots.
Did Seema Malhotra MP really expect nobody to question why she had been sat squatting in her office for two weeks having resigned? Instead nasty vindictive smears emerged against a widower with a single job who happened to work in John McDonnell MP’s office. Or does Jess Phillips MP really think she is the best advocate for a ‘kinder form of politics’, when she once boasted of stabbing Corbyn in the front not the back? Or does Jamie Reed MP think he can get away with a question in PMQs, widely interpreted in the mainstream media as trying to humiliate the leadership of Labour, just minutes before Andy Burnham MP, Shadow Home Secretary, gives a serious statement on Oregreave?
The Labour Party PLP and Owen Smith MP have tried to market their way to success – and have failed.
The vast majority of the Labour MPs are clearly deluded if they thought, all 171 of them, that they could ‘force’ Corbyn to resign, against the rules.
In fact, if you read the judgment against the Labour donor last week, it states specifically that the reason that the rules are unambiguously interpreted in Corbyn’s favour is due to the simple fact that Corbyn did not resign.
And it will play out again in the courts next week.
Will the Court view the sudden rule change by the NEC regarding membership and voting to be lawful? I think a fair legalistic appraisal of the situation can find there’s been a breach of contract. Fresh Labour members sign up to clearly identifiable terms and conditions on the website, which makes reference to the Rule Book and the Political Parties, Elections and Referendums Act 20000. Voting is clearly a membership activity.
Is there a contract of membership with Labour as a political party? Yes, according to clause 2 of the High Court’s own judgment last week delivered in the Strand, making reference to a case of Chaudhry and Ors v Treisman, which made interesting reading for me at 3 am.
The question though is what the High Court will then do about it. The remedy in contract law tends to be damages – so one assumes the NEC will simply be asked to reinstitute voting rights or to give these new members a refund. Restitution in English law is relatively rare, however (though do see the Spycatcher case.)
It’s suddenly got very ugly, as the Labour Party PLP will now finally realise they can’t bully the membership into getting their own way. The final throw of the dice and die is to threaten a split and for the failed Labour Party MPs to get the name of ‘Labour’ – but this is desperate stuff. Ugly stuff – and entirely to be predicted when social movements defeat marketing.
Somebody defined ‘insanity’ as “doing the same thing over and over again and expecting different results.” It might have been Einstein?
Labour has in fact had some time to get to grips with the ‘post Thatcher settlement’. Whether or not you happen to agree that a Labour pig with a rosette could have been elected in 1997, it is a material fact that the New Labour administration was the continuity candidate in reality but the change candidate by name.
The private finance initiative had been incubating under the administration of Sir John Major from about 1993, at roughly the same time fellow Conservative Lord David Willetts had written a pamphlet on it for the Social Market Foundation. As an example of public-private initiatives, it could be argued that the PFI was brought in with the best of sincere intentions. However, it has seen a lot of taxpayers’ money being siphoned off pursuant to unconscionable interest rates on loan agreements from the public sector to the private sector. Call it what it is – even if emotionally – this is privatisation.
As it was, ‘ready to go’ contracts under Coopers and Lybrand were launched with gusto in 1997 with the accession of St Tony The Blair. It is a policy which has persisted, no matter who is actually in government. The other policy in the portfolio of privatisation, this time at the individual level, called personal budgets (but consumer-directed care in other jurisdictions) has likewise been introduced, without a clear democratic mandate, whoever is in office and in power.
The setting up of autonomous NHS Foundation Trusts competing with each other to drive up quality was a nice idea, but deeply flawed. What was seen in the NHS Act 2006 of the dying days of New Labour was later to be invigorated in the Health and Social Care Act 2012. The 2012 legislation from the Coalition contained an explosive clause, known as section 75, which would obligate the outsourcing of services through competitive tender unless there was a sole bidder.
Competition, under both New Labour and the Conservatives, provided extra costs for example through corporate legal disputes, did not drive up quality, and most damagingly could mean that decisions about the provision of healthcare were not made on the basis of clinical need but on the basis of economic regulation. This was at a time when competition in oligopolistic economies, such as utilities, had blatantly failed.
The resentment for many Labour voters who left, and want to return to support Jeremy Corbyn, is that there was no point supporting New Labour if it, to all intents and purposes, is a carbon copy of the Conservatives. The term #ToryLite reflects this, and the rather naive belief has been that New Labour, resurrected as ‘Saving Labour’, can only possibly win if the Labour Party adopts the same centrist position as the Conservatives.
Nowhere was this more obvious was in Ed Miliband MP’s reaction to Theresa May MP’s speech on the steps of Downing Street as she (not he) assumed the mantle of Prime Minister. Ed Miliband not only will have seen the echoes of the meme ‘making the economy work for all’, which he had argued in his leader’s speech as ‘responsible capitalism’ but also led to a profound deconstruction of where Labour had lost his way.
Quoting Tony Benn in his speech reacting to #Brexit, Ed Miliband pointedly has said that #Brexit demands the left to have an intelligent look at why many voters, perhaps the ones who had not benefited from free movement of workers, had voted for #Brexit. And, oddly enough, Lord Mandelson in a speech just days’ previously had come to the same conclusion – except Ed Miliband MP pointedly added that ‘the reasons for #Brexit went far beyond the campaign’, parsimoniously as a rebuke of those who had criticised Jeremy Corbyn MP.
The uncomfortable fact for many Labour MPs is that Jeremy Corbyn is no more ‘responsible’ or ‘at fault’ for the #Brexit result, than he is for a sizeable number of free-thinking reasonable MPs voting against Trident in a wide ranging debate on defence diversity.
Hilary Benn MP is somewhat pathologically obsessed about ‘winning’ and seems quite determined to encourage fellow Labour MPs to jump off the cliff with him. Benn Jnr. said pointedly to Sarah Montague on the #r4today programme this morning, “I would happily die in the Labour Party.” It is unlikely, however, that the Labour Party will die in the near future, despite the set of events he started leading to the indignity of sitting MPs refusing to support Jeremy Corbyn. Only nine months previously, Umunna, Kendall, Cooper and Reeves had run off the pitch in protest, even before the starting whistle had blown on a new match.
Rather, the Labour Party appears to have been invigorated with a surge in membership. As Steve Richards, leading political commentator, advised on Sunday Politics at the weekend, “It is actually quite simple – the parliamentary Labour Party can’t work with Jeremy Corbyn”. It is a moot point whether Corbyn particularly wants to work with these Labour MPs, on the other hand.
The strangest thing about the whole fiasco has been the abject failure of the parliamentary Labour Party to mount successfully an ‘Anyone but Corbyn’ candidate. And even a small panel of current Labour MPs last night on #newsnight, following a strange hagiography of Owen Smith MP from Nick Watt, pointed out that there were no points of divergence on policy.
The question must remain why there has been such a strong hate campaign against Corbyn. If you take as red the assumption that the leader’s office needs to work much better with parliamentary MPs, after 9 months it makes sense to do rigorous performance management of the Labour Parliamentary Party. Theresa May MP, the current Prime Minister, has made it emphatically clear that there will not be an early election, consistent with the notion that a huge number of MPs will NOT vote against her in a vote of ‘No Confidence’ pursuant to the Fixed Term Parliaments Act.
But if Jeremy Corbyn MP wins the leadership contest (again), the current Labour MPs will have a huge amount of egg on their faces. One of the complainants against Corbyn’s style complained her press release got binned despite months of planning. The reason? Corbyn had, in fact, to do another reshuffle forced upon him due to Labour MPs acting like petulant schoolkids AGAIN.
All of this is dreadfully sad, as the UK does need serious questions answering like devolution and #Brexit.
And the risk is unless the Labour Party can get its act together there will be no serious opposition to the Conservative Party, and even the Tories will implode.
There is another big risk – that various other deadly policy developments, like forcing in the junior doctors’ contract, adding top up fees to use the NHS, the forced academisation of schools, the repeal of the Human Rights Act and leaving of the European Convention of Human Rights – will all occur while the current MPs refuse to serve the current leader of the Opposition, Jeremy Corbyn MP. They all tend to say that one day of a catastrophic Jeremy Corbyn government will be infinitely worse than a day of a Conservative government.
The definition of ‘insanity’, whoever said it, is important.
Labour seem to have forgotten – or maybe Hilary Benn would not like to admit it – that the conversion to not signing up to austerity, justifying NHS cuts and social security abstentions, was very late in the day.
Also, Labour about a decade started losing the share of the vote ‘despite winning’.
They emphatically lost Scotland.
Even with blissful ‘moderate’ leadership, Labour lost the 2010 and 2015 general elections.
And yet – you could have easily imagined Labour under Ed Miliband wishing to introduce smartcards to harmonise personal budgets for health and universal credit for disability benefit. This is an extremely sad state of affairs.
As for neoliberalism – same meat, different gravy. Or put another way – same script, different newsreader.
Despite the lack of policy and inability to lead MPs, which can be ameliorated between now and the third thursday of may 2020, Jeremy Corbyn and colleagues are not suffering from a poverty of aspiration. Ironically, all the things think tanks have been banging on about, like aspiration and freedom from insecurity, mysteriously do not seem to apply to Jeremy Corbyn according to Labour MPs.
Say – for example – you wanted to improve the quantity and quality of social housing stock, do something at long last about aggressive tax avoidance, re-analyse the use of PFI in NHS finance, or even renationalise the railways or social care – Jeremy Corbyn might suddenly be your man, and curry enormous favour with members of the public, not just ‘traditional Labour voters’.
Time is not on Labour’s side. Most of the points made by Simon Stevens in his vision for the NHS, published this morning in the Telegraph, were actually made by Andy Burnham MP, when he was shadow secretary of state for health prior to the 2015 general election.
It is well known that Andy Burnham lost the battle twice against the parliamentary Labour Party in calling for a national care service. Burnham said clearly in the 2015 leadership hustings at the Guardian event he had become ‘disillusioned’ and that he felt that the ‘modern Labour Party would be incapable of having the vision of introducing the National Health Service’.
Later today, the Parliamentary Labour Party will endorse Owen Smith MP to be the preferred candidate to go against Corbyn – and Smith will in reality not offer much apart from a bit of a tinkering – e.g. wages councils. This ‘son of Nye Bevan’ once supported PFI. The ‘new deal’ which has been resuscitated more times than Corbyn has had jeering will be crippled by media attacks on its likelihood of ramping up even further our burgeoning national debt.
Owen Smith MP despite claiming to be a socialist is the polar opposite in government style to true socialist Tony Benn who saw the Callaghan era as doing things ‘slightly more efficiently than the last lot’. The PLP will reject Angela Eagle.
But the membership will reject Smith, much to the chagrin of the Labour PLP. And meanwhile Angela Eagle MP’s career, despite enormous talent, will have been comprehensively annihilated.
Divided parties don’t win elections. But it is clear that cheerleaders of #SavingLabour don’t want to support the current leadership, whatever. This of course is a massive tragedy for the whole country.
My decision to vote for Jeremy Corbyn was not easy. I have learnt to desensitise myself from the hyperbolic shrill of Twitter, and the numbskull hashtag bandwagon campaigns.
First of all, I am mindful that voting for Jeremy Corbyn will be seen by some as a betrayal of the legacy of the Labour Party having made itself electable in the turbulent years in the since the mid 1980s. I should not go so far as to say ‘a pig with lipstick’ could have won the 1997 general election, but I do agree with a sentiment expressed in Liz Kendall’s final speech that Labour did not really have an adequate discussion of what it stands for for a very long time. Whether you agree it or not, there is a perception that Labour to get itself elected is ‘Tory Lite’. This is perceived as huge insult to those who believe in the policies which swept Tony Blair to power in 1997 by some. But it is the reluctance of those same people to ignore how ineffective we have become in opposition which truly worries me.
Get this. I am physically disabled, and I had to apply three times including a tribunal in Grays Inn Road to get my disability living allowance restored. I found my experience with welfare benefits traumatic, but this cannot have been said to be anywhere as traumatic as those people who took their own lives. Like the MP who spoke elegantly in the debate on assisted dying yesterday, I am loath to say ‘commit suicide’ in the linguistic conflation with the criminal law, such as ‘commit manslaughter’ or ‘commit murder’. I cannot think it is necessary for you to be physically disabled to understand the mental pain which has been brought about by the welfare reforms. but it sometimes feels like it.
When three of the candidates abstained on the welfare reform bill, it really was a massive kick in the groin for me. If anything, Andy Burnham’s explanation of the ‘reasoned amendment’ made it a million times worse. I am not a subscriber to Len McCluskey and UNITE but I felt more than a smidgeon of sympathy when he said he felt like sending Harriet Harman MP the dictionary definition of “opposition”. This single vote was a game changer for me. I had to look very hard to support Andy thereafter. I think his idea to bring together health and social care is much overdue. The reason for this is that the problems in the social care system have a direct effect on the operations of the NHS. But it cannot be ignored by me that Labour did much to bring about the mess of privatisation of social services either. I do not agree with the Foundation Trust policy, introduced by New Labour, as it is my perception that there are NHS Trusts, such as Mid Staffs and Morecambe Bay, which were more interested in their Foundation Trust status than their record on patient safety, and the ability of the clinical regulators to bring anyone to account for clear misfeasance is woefully inadequate. Foundation Trusts, and what has happened, a high proportion of Trusts in deficit in a market gone wrong, is not a legacy of New Labour I can agree with. I am sorry to lay this at the door of Andy Burnham partly, and I would not have minded had it not been for his stance on the private finance initiative (PFI). Andy uses PFI to argue that Labour mended the roof while the sun was shining, but it is shockingly and absorbingly transparently the case that the loan repayments have been unconsionably poor value, as admitted by Margaret Hodges’ committee, something has to be done about it fast. The fact that there are City traders who trade in equity in PFI tells you something about the machinery New Labour put in place over the NHS.
Jeremy Corbyn spoke to my values. I get the fact that he is very old (but that surely should not be a problem unless you are profoundly ageist which I am not?) I think the fact that he disagrees with PFI is a factor, but so is the idea that you invest in people. I remain aghast at how many people seem to think that nurses pay is a trivial idea, mainly from people who have never done had a hard day’s work in the NHS ever. But let me tell you one thing which is very important – nurses’ mental welfare is very important, and rewarding nurses for their difficult job is a step towards that, more useful than yoga classes or whatever the latest out of touch managerial initiative from NHS England is. I think also it IS a problem that Russian oligarchs can buy up new builds in London, and Boris Johnson for example is prepared promote that, at the expense of shoving up house prices in London making social housing in London unaffordable for many. The Blair Twelve, for all their verbal masturbation about how disastrous a Corbyn government will be, have never offered anything constructive on social housing. This is not an issue of “Blairite vs Brownite” for me, it just happens that the abuse from some of those people who have been classified as Blairite has been for me completely unacceptable. Likewise, I think the abuse that Liz Kendall has received is simply disgusting, on account of her standing up for her opinions legitimately.
Economists disagree. I know a reasonable amount of economics, to the point I came top in economics in my own MBA. I think the way people have dismissed a ‘people’s QE’ out of hand distresses me, as it shows that they are more driven by securing their own ideology than potentially helping others in society. It does distress me even more that we have continued with the destruction of delivery of legal aid as we “cannot afford it”. Remember – Sadiq Khan MP, newly elected Labour Mayor candidate – was unable to pledge the reversal of cuts to legal aid when Shadow Justice Minister. And so it goes on. There’s a Labour refusal to say that the £20n efficiency savings, now £30bn, is now unworkable because of the desperate need to hang onto austerity. I have found Yvette speaking too much ‘shrill’ in the debates, and, apart from her interesting anecdote about her Haribos factory, I have found her uniquely uninspiring in the debates. Cooper for example had nothing of interest for me to say on the NHS or social care. And we do know that austerity has failed in numerous jurisdictions – Osborne’s own plans for austerity have failed numerous times, as our national debt has exploded far more than under Labour. Cooper may want to reduce the ‘people’s QE’ as ‘PFI on steroids’ but the way in which Labour implemented QE was itself ‘on steroids’. As Jeremy Corbyn rightly points out, signing up to the Conservatives’ economic plan in 1997 meant us signing up to PFI at the time, and a huge number of contracts were introduced under Labour (even thougjh the Major tenure originally introduced it in 1993).
I think Jeremy Corbyn is a good speaker. He is a Facebook friend. Sure, I ‘get’ the concerns about him potentially leaving NATO and wider foreign policy, but I note that he has never said recently he will definitely leave NATO. For me, he has spoken much sense on the refugee crisis. I expect his Shadow Cabinet to be kept in check by a strong Shadow Foreign Secretary, as I think Hilary Benn MP might be. I as it happens feel that Angela Eagle MP would make an excellent Shadow Chancellor. It’s clear that Scotland rejected Labour. I think the SNP is nationalist rather than socialist, and will do anything to further their nationalist ambitions. But I do think Corbyn does have a chance in speaking to disaffected Labour voters who voted SNP or UKIP recently. I think Corbyn is far from perfect, but he himself has urged the need for a united party, where policy is going to be driven by the grassroots. One of my own personal unpleasant experiences was in the Socialist Health Association where I felt it was impossible to have your contributions valued despite the wealth of experience you can bring. I have no truck with this method of working from the SHA, and I think the whole Labour machine has been like that.
I would like to give Jeremy Corbyn a chance. I am genuinely sorry to those of you who will feel offended by this.
Music and dementia – where to begin?
Sometimes we’re given a gift – and our tendency is to overanalyse it, not appreciating it’s a gift.
A gift horse is a horse that was a gift, quite simply.
When given a horse, it’s apparently bad manners to inspect the horse’s mouth to see if it has bad teeth.
Nature has given us a gift where music can have amazing effects for people having cognitive problems as part of their dementia.
We are only in our infancy of understanding how the human brain works, and it’s taken us a lot of time to get this far.
Also, we are only just beginning to work out why music is such a powerful stimulus for all of us.
But music and dementia go to the heart of what sort of NHS we want.
The NHS currently is set up as a fragmented, ‘illness service’.
It should be promoting wellbeing instead: in other words, quality of life.
A cure for dementia is laudable for 2025 – and so is a better consensus on how to prevent the dementias.
But world dementia policy including our own is rapidly spiralling into a catastrophic pit, of actually ignoring people currently trying to live well with dementia.
When I tweeted that I was to give a talk on music and dementia, somebody replied, “ the power of music in dementia care is priceless”.
And it’s easy to get bogged down in the epidemiological figures from celebrity epidemiologists, but what do we do about music?
It might be hyperbolic to see music as an ‘intervention’. It is after all part of our day to day life.
Many of us can relate to the sentiment, “This music reminds me of my childhood and my family”.
The starting point is that music is a cultural universal phenomenon.
Understanding of the cognitive and neurological bases for music affective dimensions of music have received much attention, the processing has advanced greatly in recent decades.
Processing of music in the brain uses a combination of cognitive and emotional processes.
Why is music so pleasurable?
It is simply a sequence of tones. Yet music has been present in every known human culture as far back as history dates.
The mystery lies in the fact that there are no direct functional similarities between music and other pleasure-producing stimuli: and it has no clearly established biological value (as compared to other rewards such as food, love, and sex).
It has no tangible basis (as compared to pharmacological drugs and monetary rewards).
It has no known addictive properties for the vast majority (as, for example, compared to gambling and nicotine and smoking cigarettes).
Despite this, music is consistently ranked amongst the top ten things that individuals find highly pleasurable, and it plays a ubiquitous and important role in most people’s lives.
At the heart of it all is the notion that the whole is significantly more than its constituent parts.
A piece of music makes much more sense than the exact combination of individual notes.
In his latest book, “Musicophilia,” Oliver Sacks has focused successfully on people who have developed remarkable musical powers — so called, “musical misalignments” that affect their professional and daily lives.
A composer of atonal music starts having musical hallucinations that are “tonal” and “corny”: irritating Christmas songs and lullabies that play endlessly in his head.
A “musical savant” with a “phonographic” memory learns the melodies to hundreds of operas, as well as what every instrument plays and what every voice sings.
So if music is so good for people with dementia, why don’t we have more of it?
We have a very medical model of doing things.
Big Pharma always calls the tunes, pardon the pun.
I think this is, in part, where we have gone wrong in English policy.
You see it everywhere in the language – the search for a ‘cure’ for dementia is relentless, such that anything less is a failure.
This is clearly setting policy up to fail.
Earlier this month, I was harangued by my hairdresser as to why people should want to receive a diagnosis of dementia.
He explained: “well, there’s no treatment for it, is there?”
Indeed, the current guidance from the National Institute for Clinical Excellence (NiCE) is that the cholinesterase inhibitors, used to treat symptoms of difficulties in learning and memory, have a limited time window for many.
Only a few months – and even then the disease process is not reversed.
The current main NICE guidelines, now nearly a decade old, on the management of dementia offered few evidence-based recommendations on psychosocial approaches because there were few good studies.
It therefore seems utterly reasonable for policy to aspire people living with dementia to lead a better quality of life.
Wellbeing in dementia is important, as the seminal work of Prof Sube Banerjee, Chair of Dementia, has shown in his work.
Positive wellbeing (i.e. happiness and life satisfaction) in later life is thought to be derived from being involved in activities that are personally meaningful and valued, especially informal social activities (Adams, Leibbrandt, & Moon, 2011).
Take for example this particular “YouTube” hit.
An African-American man in his 90s named Henry, is said to ‘lie dormant’ but is given an iPod loaded with the gospel music he grew up with.
The effect seems almost impossible and literally miraculous: Within seconds his eyes are open, he’s singing and humming along, and he’s fully present in the room, talking to the people around him.
This iPod has massively improved his quality of life, and the quality of life of those around him.
I say iPod, but I mean any mp3 player!
But we all have different musical capabilities.
Che Guevara, he tells us, was “rhythm deaf,” capable of dancing a mambo while an orchestra was playing a tango,
Research has in fact shown that your quality of life is improved when you improve the quality of life of others.
So why aren’t iPods available on the NHS?
Well, some believe that GPs should be able to prescribe an iPod for such individuals with dementia.
That’d be ‘social prescribing’ then.
Research from Nesta in 2014 by the innovation charity Nesta and the Innovation Unit suggests GPs across the country are increasingly keen on the “more than medicine” approach of social prescribing, which typically includes activities from dance classes to knitting groups and cookery clubs.
One of the challenges in caring for people with dementia is organising appropriate meaningful and stimulating activities.
Among 1,000 doctors surveyed, four out of five thought social prescriptions should be available from their surgeries, in particular exercise groups, help with healthy eating and groups providing emotional support.
Yet patient experience suggests the opportunities to benefit are limited. Nesta questioned 2,000 members of the public, with just 9% saying they had received a social prescription. More than half (55%) said they would like their GP to offer them.
And it is likely to be no less cost effective than a course of medication.
But we don’t have the research data to show this, as no one is researching it.
Blame the researchers – blame Big Charity – but blame anyone apart from me please!
The whole system is geared up in an unhealthy way the wrong way.
The aim is to ‘repair’ people with dementia, rather than to care for people with dementia.
The system disproportionately rewards clinicians for treating illness, whereas it should be geared up for encouraging people to lead happier, healthier lives.
The growing number of people with dementia, and the increasing cost of care, provides a major incentive to develop and test methods of supporting them in the community for longer.
But there is evidence that music has the ability to uniquely activate the brain.
Further evidence is now accumulating that music can activate pleasure and reward centres in the brain.
In residential homes, certain people with dementia can become increasingly frustrated, and communication problems play a large rôle here.
If unaddressed, such frustration can boil over into agitation or aggression.
And the good news we’re at last doing the research into all this.
For example, there’s now a project called “Music in Mind”, from the University of Manchester and Care UK, which has run in 123 residential homes for elderly people.
The aim is to find out if classical music can improve communication and interaction and reduce agitation for people in the UK living with dementia – estimated to number just over 850,000.
The quick fix solution is for a medic to implement the ‘chemical cosh’, but this brings a whole barrage of ethical questions.
How much better would it be, then, for a person to become happier with a mp3 player?
The most remarkable about this is how it seems to be working, even though neuroscientists can’t easily work?
Why do some people with dementia learn better after a short spell of Vivaldi’s “Four Seasons”?
One way to get behind this mystery is to learn lessons from other brain conditions, where the structure and function of the brain are affected.
Take for example stroke.
Oxygen can cut off blood supply to a part of the brain, meaning that you lose that part of the brain.
Bill was reported on the BBC website.
Bill, from west Berkshire, had been in hospital recently after having a stroke, but Jean, from an initiative called “Singing for the brain”, kept up the singing and said it has given them both a focus, even helping his slurred speech recover following the stroke.
And the description is quite remarkable.
“He is 82 and likes all the old time songs, but he also started singing some Beatles songs and songs from the Broadway shows and even some modern stuff as well.”
“He seemed to be able to slowly learn things again. I would take the song sheets home after the sessions and we would sing them at home. It enlivened him and he really enjoyed doing it.”
Evidence for the beneficial effects of singing in groups also comes from the ‘Singing for the Brain’ model, which was devised by the West Berkshire Branch of the Alzheimer’s Society and the Silver Song Club Project.
An evaluation of a three-session singing group demonstrated singing was an enjoyable activity for PWD and had the potential to enhance wellbeing and quality of life for them and their carers.
Specifically, “music therapy” worldwide is a psychological, social, behavioural and creative intervention in which trained therapists use music-making and words to support and enhance patients’ expression of feelings, their sense of self and their ability to connect and communicate with other people.
According to a critical review by Marshall and Hutchinson (2001) well-being and life satisfaction have increased among people with dementia who participate in different activities.
Studies have also shown that participation has decreased challenging behaviours such as agitation and aggression, improved and supported communication, improved quality of life, provided a way to express feelings, and improved self-esteem and self-respect.
Alzheimer’s disease is the most common type of dementia worldwide.
It is important, but not synonymous with all dementia.
Scientists are trying desperately hard to discover why it presents the way it does.
And that is – people find themselves forgetting more than the odd thing, find themselves quite lost in what used to be familiar environments.
You don’t have to be old for this to happen.
You have people in their late 30s to which this can happen, less frequently.
What goes wrong is a malfunction in a part of the brain near the ear, due to a build up of inappropriate substances.
But this malfunction occurs right bang in the brain circuitry involved in the formation of new memories.
Somehow, when we form new memories, these memories get shunted to somewhere else in the brain.
And we’re not exactly sure where.
However, what we do know, is that people with Alzheimer’s disease can have remarkably good memories for events which happened a long time ago, even if they have real problems in remembering what they had for breakfast.
Ribot, a remarkable French neurologist, in French, in 1881, called this ’The new perishes before the old’.
And weirdly enough music is quite easy to recall.
One factor in the popularity of such an approach is that it works with early memories, which are often intact for people with dementia, thus drawing on the person’s preserved abilities, rather than
emphasising the person’s impairments.
However, its popularity has not led to a corresponding body of evidence on its effects.
The ubiquity of music in human culture is indicative of its ability to produce pleasure and reward value.
Anne Blood and Robert Zatorre at the Montreal Neurological Institute, McGill University, Montreal in Canada have done some truly remarkable work here, I feel.
Many people experience a particularly intense, euphoric response to music which, because of its frequent accompaniment by an autonomic or psychophysiological component.
These are sometimes described as “shivers-down-the-spine” or “chills”.
These chills are great to study as they represent a clear, discrete event and are often highly reproducible for a specific piece of music in a given individual.
Subjective reports chills are accompanied by changes in heart rate, and and breathing rate.
So there’s something going in the neural wiring of people here.
As intensity of these chills increased, cerebral blood flow increases and decreases were observed in brain regions thought to be involved in reward motivation, emotion, and arousal.
These include focal parts of the brain and brainstem, with long names, including the ventral striatum, midbrain, amygdala, orbitofrontal cortex, and ventral medial prefrontal cortex.
These brain structures are known to be active in response to other euphoria inducing stimuli, such as food, sex, and drugs of abuse.
“Singing for the Brain” is a service provided by Alzheimer’s Society which uses singing to bring people together in a friendly and stimulating social environment.
Singing is not only an enjoyable creative activity, it can also provide a way for people with dementia, along with their carers, to express themselves and socialise with others in a fun and supportive group.
Singing is one form of something called ‘triggering reminiscence’.
Reminiscence groups, run by professionals and volunteers, which use photographs, recordings and other objects to trigger personal memories are probably the most popular therapeutic approach to working with people with dementia.
So why does all this happen?
I reckon the key to all this is in a part of the brain very close to the one I studied in my PhD at Cambridge on dementia in the late 1990s.
That’s the subgenual prefrontal cortex part of the brain, close to your eye.
Ingrid Nieuwenhuisa and Atsuko Takashima from Berkeley California in 2011 proposed that the function of the subgenual vmPFC is to integrate information which is represented in separate parts of the limbic system (the hippocampus, the amygdala, and the ventral striatum).
I think that’s the place so crucial in the activation in musical memories.
Petr Janata had, in fact, brought this to life for me in a paper from 2009.
And it’s more or less where the subgenual prefrontal cortex is.
The medial prefrontal cortex is regarded as a hub of the brain that supports self-referential processes, including the integration of sensory information with self-knowledge and the retrieval of autobiographical information.
Janata cleverly used a form of brain imaging called “functional magnetic resonance imaging” and a novel procedure for eliciting autobiographical memories with excerpts of popular music dating to one’s extended childhood to test the hypothesis that music and autobiographical memories are integrated in the medial prefrontal cortex.
Janata’s results are indeed fascinating.
They suggested that the dorsal medial prefrontal cortex associates music and memories when we experience emotionally salient episodic memories that are triggered by familiar songs from our personal past.
But there’s a plethora of different types of dementia.
Possibly as many as a hundred.
Semantic dementia is loss of the knowing ‘why’ rather than the what, knowing that a bike is a form of a transport, rather than the fact you rode a bike on your sixth birthday.
Patients with semantic dementia have provided a unique opportunity to study the cognitive architecture of semantic memory.
Abnormally enhanced appreciation of music or “musicophilia,” reflected in increased listening to music, craving for music, and/or willingness to listen to music even at the expense of other daily life activities.
A patient reported by Boeve and Geda (2001) became infatuated with polka music several years after onset of semantic dementia at the age of 52.
Also, Hailstone and colleagues (2009) described the case of a musically untrained 56 year old woman with semantic dementia who became intensely interested in music, playing, and singing along to a small repertoire of recorded pop songs.
Phillip Fletcher, Laura Downey, Pirada Witoonpanich and Prof Jason Warren at the Dementia Research Centre, UCL Institute of Neurology, University College London, London, UK reported in 2013 that something quite remarkable about “musicophilia”.
That is, musicophilia was more commonly asso- ciated with the syndrome of SD (associated with focal anteromedial temporal lobe and inferior frontal lobe atrophy) than another type of dementia known as the behavioural variant of frontotemporal dementia.
The beauty about “administering” music to a person with dementia is that it offers a highly personalised approach.
It’s not like a drug, where it doesn’t matter what the background of the person was.
With an iPod, you can tailor the music playlist, according to the known preferences of a person with dementia.
And this is entirely in keeping with what many of us wish to see from the new Government.
A person-centred, rather than a patient-centred service.
One which cares, as well as repairs.
It’s furthermore deeply fascinating for those individuals who study the brain, like me, including cognitive neuroscientists and cognitive neurologists.
Perhaps the existence of distinctive brain knowledge systems for music suggests that music may have played a specific biological role in human evolution?
So many questions, and not enough answers.
But music works in ‘activating’ certain living with dementia.
It’s a curious phenomenon.
It’s a gift horse that something so practical could massively improve somebody’s quality of life.
Sometimes it’s best not to look a gifthorse in the mouth.
I am basically a member of the UK Labour Party. I thank the late Baroness Thatcher, as I found her administration repulsive. I think though her greatest achievement was toxifying the Labour Party, and we are slowly making up for lost time. It is clear that some people are sick of being enslaved by financial markets, while some people seem to be doing extremely well, thank you. The way that the sick and disabled have been treated by the Liberal Democrats working for a ‘fair society and strong economy’, The annihilation of legal aid in their bid for a ‘fair society’ equally repels me. in conjunction with their Conservative masters disgusts me. In the Wartime coalition, Labour criticised the Conservatives’ policies and got credit for it. Instead, the Liberal Democrats have bent over backwards so much it hurts. They will reap what they so. We seem to have enough money to go to war, but not enough money to keep an adolescent with mental health problems out of a police cell for a night. The economy is clearly screwed, with falling tax receipts, in a race to the bottom with zero hour contracts favouring hedge funds and employers who don’t give a monkeys about workers’ rights. I have never seen David Cameron eat a bacon butty, but I don’t think I would like that either.
This is a very important chapter to me.
Culture and diversity considerations are hugely pervasive in all of English dementia policy: from the point of timely diagnosis and throughout the course of post diagnostic support.
These are the academic journal references I wish to include in my chapter for my book ‘Living better with dementia: champions for enhanced friendly communities”.
Please do let me know of any initiatives, projects, published papers or reports that you should like me to include in this chapter.
What is listed below is only a start. It does include blogposts, which I intend to include too.
This chapter is of course hugely relevant to global dementia policy.
Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging Ment Health. 2007 May;11(3):281-90.
Botsford J, Clarke CL, Gibb CE. Dementia and relationships: experiences of partners in minority ethnic communities. J Adv Nurs. 2012 Oct;68(10):2207-17. doi: 10.1111/j.1365 2648.2011.05905.x. Epub 2011 Dec 11.
Bowes A, Wilkinson H. ‘We didn’t know it would get that bad': South Asian experiences of dementia and the service response. Health Soc Care Community. 2003 Sep;11(5):387-96.
Burns A, Mittelman M, Cole C, Morris J, Winter J, Page S, Brodaty H. Transcultural influences in dementia care: observations from a psychosocial intervention study. Dement Geriatr Cogn Disord. 2010;30(5):417-23. doi: 10.1159/000314860. Epub 2010 Nov 12.
Chan WC, Ng C, Mok CC, Wong FL, Pang SL, Chiu HF. Lived experience of caregivers of persons with dementia in Hong Kong: a qualitative study. East Asian Arch Psychiatry. 2010 Dec;20(4):163-8.
Connell CM, Gibson GD. Racial, ethnic, and cultural differences in dementia caregiving: review and analysis. Gerontologist. 1997 Jun;37(3):355-64.
Day A, Francisco A. Social and emotional wellbeing in Indigenous Australians: identifying promising interventions. Aust N Z J Public Health. 2013 Aug;37(4):350-5. doi: 10.1111/1753 6405.12083.
Friedman MR, Stall R, Silvestre AJ, Mustanski B, Shoptaw S, Surkan PJ, Rinaldo CR, Plankey MW. Stuck in the middle: longitudinal HIV-related health disparities among men who have sex with men and women. J Acquire Immune Defic Syndr. 2014 Jun 1;66(2):213-20. doi: 10.1097/QAI.0000000000000143.
Johl N, Patterson T, Pearson L. What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings. Dementia (London). 2014 May 22. pii: 1471301214534424. [Epub ahead of print]
Khan F, Tadros G. Complexity in cognitive assessment of elderly British minority ethnic groups: Cultural perspective. Dementia (London). 2013 Feb 21;13(4):467-482. [Epub ahead of print]
Kirk LJ Hick R, Laraway A. Assessing dementia in people with learning disabilities: the relationship between two screening measures. J Intellect Disabil. 2006 Dec;10(4):357-64.
La Fontaine J, Ahuja J, Bradbury NM, Phillips S, Oyebode JR. Understanding dementia amongst people in minority ethnic and cultural groups. J Adv Nurs. 2007 Dec;60(6):605-14.
Lim YY, Pietrzak RH, Snyder PJ, Darby D, Maruff P. Preliminary data on the effect of culture on the assessment of Alzheimer’s disease-related verbal memory impairment with the International Shopping List Test. Arch Clin Neuropsychol. 2012 Mar;27(2):136-47. doi: 10.1093/arclin/acr102. Epub 2011 Dec 23.
Llewellyn, P. The needs of people with learning disabilities who develop dementia: A literature review. Dementia 2011 10: 235-247.
Low LF, Anstey KJ, Lackersteen SM, Camit M, Harrison F, Draper B, Brodaty H. Recognition, attitudes and causal beliefs regarding dementia in Italian, Greek and Chinese Australians. Dement Geriatr Cogn Disord. 2010;30(6):499-508. doi: 10.1159/000321667. Epub 2011 Jan 20.
Manthorpe J, Moriarty J. Examining day centre provision for older people in the UK using the Equality Act 2010: findings of a scoping review. Health Soc Care Community. 2014 Jul;22(4):352-60. doi: 10.1111/hsc.12065. Epub 2013 Aug 17.
McCleary L, Persaud M, Hum S, Pimlott NJ, Cohen CA, Koehn S, Leung KK, Dalziel WB, Kozak J, Emerson VF, Silvius JL, Garcia L, Drummond N. Pathways to dementia diagnosis among South Asian Canadians. Dementia (London). 2013 Nov;12(6):769-89. doi: 10.1177/1471301212444806. Epub 2012 Apr 26.
Morhardt D, Pereyra M, Iris M. Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities. Alzheimer Dis Assoc Disord. 2010 Jul-Sep;24 Suppl:S42-8. doi: 10.1097/WAD.0b013e3181f14ad5.
Nakanishi M, Nakashima T. Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems? Alzheimers Dement. 2014 Jul;10(4):468-76.e3. doi: 10.1016/j.jalz.2013.06.005. Epub 2013 Aug 15.
Price E. Coming out to care: gay and lesbian carers’ experiences of dementia services. Health Soc Care Community. 2010 Mar;18(2):160-8. doi: 10.1111/j.1365-2524.2009.00884.x. Epub 2009 Aug 25.
Prince M, Acosta D, Chiu H, Scazufca M, Varghese M; 10/66 Dementia Research Group. Dementia diagnosis in developing countries: a cross-cultural validation study. Lancet. 2003 Mar 15;361(9361):909-17.
Regan JL. Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services. Dementia (London). 2014 May 22. pii: 1471301214534423. [Epub ahead of print]
Rovner BW Casten RJ, Harris LF. Cultural diversity and views on Alzheimer disease in older African Americans. Alzheimer Dis Assoc Disord. 2013 Apr-Jun;27(2):133-7. doi: 10.1097/WAD.0b013e3182654794.
Stokes LA, Combes H, Stokes G. Understanding the dementia diagnosis: the impact on the caregiving experience. Dementia (London). 2014 Jan;13(1):59-78. doi: 10.1177/1471301212447157. Epub 2012 Aug 3.
Sun F, Ong R, Burnette D. The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans. Am J Alzheimers Dis Other Demen. 2012 Feb;27(1):13-22. doi: 10.1177/1533317512438224.
Werner P, Karnieli-Miller O, Eidelman S. Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimers Dement. 2013 Mar;9(2):e74-88. doi: 10.1016/j.jalz.2012.02.006. Epub 2012 Oct 24.
Wilkinson, H, Kerr, D, Cunningham, C. Equipping staff to support people with an intellectual disability and dementia in care home settings Dementia vol 4(3) 387–400
The GMC are conducting a review into their ‘fitness to practise’ FTP, procedures.
The independent review into deaths of Doctors who have been on their Register, awaiting FTP, is about to be published soon one hopes.
I have decided to write the GMC a last minute contribution to this consultation.
I am on currently on the Medical Register, having been erased from it in 2006/7. It is beyond reasonable doubt that I was severely ill with an alcohol dependence syndrome.
You’ll get fewer people than me wishing the GMC well, still.
I feel that the support for unwell Doctors in the National Health Service, and any hunger for scalps of Doctors will feed into this.
The question is whether the GMC can fit itself into a wider system of learning from mistakes and also supporting Doctors ‘in trouble’.
I have learnt much from my time, not least becoming into recovery from alcoholism, and being physically disabled for the first time.
But I thought it would be incorrect not for me to make some polite views known. As I say, I wish the GMC well. I am also regulated by the Solicitors Regulation Authority, so I will expect the GMC to obey a new Act of Clinical Regulation if it comes into law pursuant to the English Commission’s proposals.
General Medical Council
3 Hardman Street
Re GMC Consultation over fitness to practice procedures
It is with interest I have been following your consultation over fitness to practice (FTP) procedures for the medical profession.
I have thus far tried to keep out of these discussions. I myself was only restored to the medical register earlier this year pursuant to a full Medical Practitioners Tribunal Service (MPTS) panel hearing. I can say with all honesty that being returned to your Medical Register was the happiest moment of my entire life. I consider a massive honour to be there now, and indeed became quite tearful taking about it at the recent BMA Careers Fair held in North London a few weeks ago.
My regulation with the General Medical Council (GMC) has been simultaneously ‘the best of times and the worst of times’. I had resisted of commenting on it, because I can hardly been said to have been detached from the processes. But I have gone through the full regulatory loop.
I also have, since my erasure in 2006, re-trained in law, having even obtained a Masters of Law. I feel that proportionality runs like letters through a stick of rock in all the work the legal profession does. Balancing competing interests is what lawyers do. It is what the GMC has done since 1858, reflected as well in your current tagline.
I have also, as explanation, successfully completed a MBA. I decided to study an area called ‘performance management’. I don’t feel this term is particularly helpful, but the discipline has a lot to offer both the legal and medical profession. I had become regulated by the Solicitors Regulation Authority back in January 2011, following a full due diligence procedure.
At the outset, I should wish to apologise for this short note. But I was moved by your current Chair, Prof Terence Stephenson, who told an audience of us at the Practitioners Health Programme in Swiss Cottage, London, that change is totally possible; however, it tends to be ineffective through loud criticism from the sidelines.
That is why I wish to address your concerns head on.
I feel personally my erasure was completely correct. In response to the Chairman of my MPTS panel who asked me whether my time had ‘gone badly’, I disagreed; I said “it was a complete disaster”.
Nearly a year after direction to erasure, in 2007 June I was blue lighted into the Royal Free Hospital. I had a cardiac arrest and epileptic seizure, with a rampant acute bacterial meningitis. I was then kept on life support for six weeks. I became physically disabled. The NHS, though, saved my life.
I have now been in recovery for seven years at least. I do not in any way condone the events which led to my erasure, but in law I believe that ‘but for’ my alcoholism these events would not have happened.
The direction of travel seems pretty clear. Despite a temporary stalling in the response to the English Law Commission, I feel it is likely the proposals for a root and branch reform of clinical regulation will take place shortly. I full support Niall Dickson in this.
Patient safety is paramount. But the balancing of competing interests is not the reputation of Doctors or the reputation of the regulator, but rather the needs of the patients compared to Doctors trying to do their professional work.
It is often forgotten that many Doctors feel mortified if they make a mistake. But the sheer volume of medical mistakes made daily, for example in medication errors, makes it untenable that every doctor who has ever made a mistake should face a tough public sanction.
Furthermore, cracking down too heavily on Doctors in the medical profession is completely countercurrent to the drive to learn from mistakes in the NHS. There should be a learning culture, and in the drive for quality complaints should be acted upon as gold-dust.
I have every confidence that a well respected medical profession will be possible through a well respected GMC. Ensuring high standards in medical profession is not only achieved through regulation. It will only be possible if seniors in the medical profession show leadership as to the skills they wish to see flourish in the health and care sectors.
There is no doubt for me that the investigations process is too long. There are clear ways in which the GMC departs from the standard English law (e.g. regards costs, telling you how long investigations will take, ambiguities in the civil standard of proof of applied). During that time, the mental health of certain Doctors appearing before the GMC will markedly deteriorate due to stress. Low self esteem is a massive problem in people like me who have faced alcoholism or, in the case of others, other substance misuse problems. When you add to this the trial by media which is out of the GMC’s control, the perfect storm can be utterly disastrous.
One of the principal ways in which the GMC departs from the law currently is how there is little emphasis to manage disputes at a local level. Mediation and arbitration is very important under the civil procedure rules of English law, prior to litigation. The GMC approach is adversarial.
I should like enforcement of the current code of conduct, with a view to solving problems rather than publicly sanctioning Doctors as the key priority, to be important. The enforcement of the national minimum wage, for example, has proved problematic, despite it being a very good piece of legislation. Likewise, one can easily argue that requirements for Doctors to express concerns about inadequate resources, or a duty of candour, are already enshrined in the code of conduct, and have been so for many years now.
I mean my short note with complete goodwill. The GMC has an incredibly important function to perform. I am currently under two professional regulators. Since my erasure, I have spent 7 years in recovery, nearly finished five books and graduated in three degrees and one diploma, so rehabilitation is perfectly possible in my view.
As such it’s going to be impossible for the GMC to ‘do outreach’ as regards the health of Doctors. I openly admitted to your MPTS panel that I failed in not putting myself under a GP. I worry about junior Doctors who are worried to seek help over medical issues, because of concerns about their careers. Patient safety is paramount. During time of a lengthy investigation by the GMC, with mental illness not under control, a Doctor due to be appearing in front of you can go from poor health to catastrophic health. They can become in total denial and lack insight.
Whilst I will note why you may not wish to ask about health issues because of various statutory instruments in the English law, one might consider whether it might be proportionate for there to be a ‘middle man’ overseeing sick Doctors. This is essential for separation of powers between the regulator and the regulated. The Practitioners Health Programme and Doctors Benevolent Fund deserve national resourcing. This is not solely an economic case; it is a moral one, I strongly feel.
I trust the GMC will act impressively in response to these demanding issues in due course. Please do not hesitate to contact me should you need to.
Dr Shibley Rahman