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Feeling the #TwitterLurve for my book – many thanks! x



Sally who’s done one of my Forewords has made this book very special for me:

I received this very encouraging book review today.

My first book review

 

And my book appeared in its first library (Sheffield Hallam University) – thanks to @reddite

Clegg

 

And I felt a bit of #TwitterLurve:

 

 

 

 

 

 

 

My personal view of the importance of high quality #research in dementia for the #G8summit



Dementia research

I have a foot in both research camps.

I believe in good quality research about the ‘medicine’ of dementia.

In the world of research, I am known to have contributed an original paper in the diagnosis of the frontal-variant of frontotemporal dementia.

This paper explained why people with a dementia could even end up having a diagnosis of this type of dementia, even though presenting in clinic with normal blood tests, psychological tests or brain scans.

Such patients did, however, have profound changes in behaviour and personality noticed by their closest ones, usually friends and family.

The paper itself has been quoted in the current Oxford Textbook of Medicine chapter reviewing the most common types of dementia, their diagnosis and management.

I do however have academic views on the importance of the ‘timely’ correct diagnosis of dementia, rather than early diagnosis.

I never give advice about anything on Twitter, as I am not a physician, but it is nice when what you say has an impact on general education of people about dementia.

I can be found on both @dementia_2014 and my other Twitter account (as I am trained in academic law as well as research in dementia) @legalaware.

Take for example how depression can be in the wrong hands misdiagnosed as dementia.
Shibley

This is an example, perhaps, of where a diagnosis is a label, and disabling not enabling.

But for very many a correct diagnosis of a type of dementia will be a key to the door for opening up the relevant care.

I feel that, whatever the ‘fiscal constraints’ the NHS finds itself in now and the future, despite the argued need for transformational change in NHS services, people with dementia should be at some stage diagnosed by somebody with specialist medical experience.

This is reflected here in a recent excellent article in the Telegraph.

The other camp is this, and oddly enough there is some overlap in my wish for people with dementia to be given the highest priority in society.

I also firmly believe in good quality research of allowing people to live as best a life they can.

This is intensely personal, as I am physically disabled, and I am all too aware about how people can make crash judgments of you.

I am about to publish a book on ‘Living well with dementia’ on January 13th 2014.

I am honoured to be well respected by academics in the field of dementia, including Prof Alistair Burns the current lead for dementia in England.

Burns tweet

I thrive from the research contributions daily all around the world in research into dementia.

I would like to see the UK play a part in leading the research community about all aspects, including the medicine of the condition itself, its possible cure one day, and current practical help in improving quality of life.

Finally, I think with the current academic community in the UK in dementia, the UK can and should achieve this.
Human brain

Would I want to know if I had a dementia?



Brain scan

Would I want to know if I had a dementia?

The background to this is that I am approaching 40.

For the purposes of my response, I’m pretending that I didn’t study it for finals at Cambridge, nor learn about it during my undergraduate postgraduate training/jobs, nor having written papers on it, nor having written a book on it.

However, knowing what I know now sort of affects how I feel about it.

Dementia populations tend to be in two big bits.

One big bit is the 40-55 entry route. The other is the above 60 entry route. So therefore I’m about to hit the first entry route.

I don’t have any family history of any type of dementia.

My intuitive answer is ‘yes’. I’ve always felt in life that it is better to have knowledge, however seemingly unpleasant, so that you can cope with that knowledge. Knowledge is power.

If I had a rare disease where there might be a definitive treatment for my dementia, such as a huge build-up potentially of copper due to a metabolic inherited condition called Wilson’s disease, I’d be yet further be inclined to know about it.

I would of course wish to know about the diagnosis. The last thing I’d want is some medic writing ‘possible dementia’ on the basis of one brain scan, with no other symptoms, definitively in the medical notes, if I didn’t have a dementia. This could lead me to be discriminated against to my detriment in future.

There is a huge number of dementias. My boss at Cambridge reviewed the hundreds of different types of dementia for his chapter on dementia in the current Oxford Textbook of Medicine. Properly investigating a possible dementia, in the right specialist hands, is complicated. Here‘s his superb chapter.

But just because it’s complicated, this doesn’t mean that a diagnosis should be avoided. Analysis can lead to paralysis, especially in medicine.

I very strongly believe that there’s absolutely nobody more important that that person who happens to living with a diagnosis of dementia. That diagnosis can produce a constellation of different thinking symptoms, according to which part of the brain is mainly affected.

I also think we are now appreciating that many people who care for that person also may have substantial needs of their own, whether it’s from an angle of clinical knowledge about the condition, legal or financial advice.

I think though honesty is imperative.

I think we need people including charities to be honest about the limitations and potential benefits in defined contexts about drug treatments for dementia. It’s clearly in the interest of big pharmaceutical companies to offer hope through treatments which may objectively work.

I think we also need to be very open that a diagnosis of dementia isn’t a one path to disaster. There is a huge amount which could and should be done for allowing a person with dementia to live well, and this will impact on the lives of those closest to them.

This might include improving the design of the home, design of the landscape around the home, communities, friends, networks including Twitter, advocacy, better decision-making and control, assistive technology and other innovations.

The National Health Service will need to be re-engineered for persons with a diagnosis of dementia to access the services they need or desire.

Very obviously nobody needs an incorrect ‘label’ of diagnosis. The diagnosis must be made in the right hands, but resources are needed to train medical professionals properly in this throughout the course of their training.

All health professionals – including physicians – need to be aware of non-medical interventions which can benefit the person with dementia. For whatever reason, the awareness of physicians in this regard can be quite poor.

There is no doubt that dementia can be a difficult diagnosis. Not all dementia is Alzheimer’s disease, characterised by symbolic problems in new learning. There are certain things which can mimic dementia for the unaware.

But back to the question – would I rather know? If the diagnosis were correct, yes. But beware of the snake oil salesman, sad to say.

Follow Jeremy Twunt on BBC Question Time



Jeremy Twunt

You can follow @Jeremy_Twunt on Twitter tonight during #BBCQT.

 

 

 

 

 

@zoesqwilliams’ viral tweet quoting @andyburnhammp



viral twitter

 

 

The tweet in question is here:

 

Viral tweet

The context of this tweet was that Andrew Neil brought up the Union funding of Labour.

In return, Andy Burnham rather elegantly, many feel, turned the tables.

Burnham argued in this one simple fact that sleazy behind-the-scenes lobbying had been more of a problem as to how the Health and Social Care Act (2012) came to be conceived.

It was, even for this well known slick political professional, a masterstroke.

There are various theories about how tweets go viral.

There was no hashtag (unusual for viral tweets). Maybe it was tweeted at an “optimal time”?

It used none of the most ‘retweetable words’, such as “please”.

It didn’t contain a link.

But it did contain a simple message about sleaze.

Also it pulled the rug from under the carpet of the BBC’s obsession about the funding of Labour from the Unions, in total contrast to how hedge funds are allegedly thought to support the Conservative Party.

And the message is a very serious one, as this video from ‘Spinwatch’ demonstrates: video 1 and video 2.

 

 

 

 

Labour’s Twitter messaging of #NHS299



One of the basic lessons of Twitter is to make your tweet ideally ‘visually eye catching’. Hence, a stunning photo might help.

It’s often said that you must make sure that ‘your content is not caught in a timewarp‘. By this, marketing professionals provide that your promotion must relate to the current configuration of a product, not, for example, a prototype.

Two Labour MPs literally decided to tweet about the #NHS299 protest outside #cpc13 by showing the same image of the ‘Stop the War’ protest against a Labour government from a few years ago.

According to Heather Stanley (@hstanley_), the source of the actual photo is in fact the ‘Socialist Worker’ from Sat 30 Sep 2006 with the caption,

Picture of 50,000 marching through Manchester on Time to Go demo

Through chance or design, 50,000 was also thought to be the number marching today.

@angelaeagle

 Eagle

@AndrewGwynneMP

Gwynne

Ed Balls 'trending' doesn't mean Keynesian policies are suddenly popular



 

from one of the Ed Balls spoof Twitter accounts today.

 

There are reasons, of course, why people or things tend to trend on Twitter. In my experience, never having read an official study on this, this tends to be when people die, or are reported to die. Or else, something a bit defamatory-worthy has occurred, and people are ‘intrigued’. Or else, something very minor has happened on BBC Question Time, BBC Any Questions, BBC Any Answers, Britain’s Got Talent, or the X Factor. It is nonetheless interesting watching the phenomenon of people jumping on bandwagons, and a sense of collective excitement, such as when Barack Obama was re-elected. Or else, there is a sense of genuine shock at sudden news, such as death of Baroness Thatcher.

 

There can be a temptation for all of us to read too much into things we observe in the social media. Hundreds of photoshopped images about George Osborne or Iain Duncan-Smith do not cause a change in direction of travel over the economy or universal credit. Why then do people devote so much time to doing them, as well as posting pictures of cute kittens? Why do people also put in so much time and emotional into having passionate debates on Twitter with well-known journalists? There is an element of narcissism which pervades all our society, where we often do things not for the benefit for anyone apart from ourselves. However, this culture is also pervasive in the politicians who seek us democratically. Many people as they become older become jaded about what politics actually achieves, and, whilst they find the topics themselves actually quite interesting, find the actual political process quite rank and stifling.

 

Today was “Ed Balls Day”. Ed Balls, it is reputed, accidentally tweeted his own name, leading to thousands of people re-tweeting it. It has become a viral meme, and the subject of an affectionate joke. What does this do for Ed Balls’ popularity? Not much, of course, in that most people have either heard of him as someone who helped to wreck the economy under Gordon Brown, or a brilliant Keynesian economist who trained at Oxford and Harvard, or somewhere in between. Have people used seeing the Ed Balls tweet to seek to discover what the Labour economic policy is or isn’t? No. Granted, there are going to be people who have re-tweeted Ed Balls’ name not because they love him, but because they loathe him.

 

All of this feeds into the apparent paranoia of politicians who feel that politics has become irrelevant. Seeking out the reasons for the millions of people not bothering to vote has become almost obsessional. Already, the post mortems have begun about why the section 75 NHS regulations vote was lost in the House of Lords. Various theories abound ranging from the relative success of the sales patter of Baroness Williams and Lord Clement-Jones, the fact that elderly Labour peers could not find suitable accommodation in London that night, or an insufficient number of Crossbench peers were unconvinced to vote against the Regulations. And so it could go on, but the issue remains why do people not bother voting. I have also noticed a trend where people find not only politicians boring, but the generally tribalist partisan nature of debate. The legislative process, like the judicial one, is adversarial, and is therefore based on competition not collaboration. The end result is that people end up being hostile to each other, exaggerating their differences, but not drawing attention to the similarities. This, of course, leads to a very distorted manner of taking policy further. For example, the Labour Party have amplified policy differences in procurement to the point of arguing that the privatisation rollercoaster has accelerated, but it is of course Labour which introduced NHS Foundation Trusts (which some believe are the ultimate ‘units’ for a privatised secondary care system) and the previous procurement regulations in the form of the Public Contracts Regulations 2006. Supposedly, the Conservatives are ‘building on’ the legacy of New Labour in “free schools”, and much to the embarrassment of Labour, Baroness Thatcher is reputed to have said that her greatest legacy was Tony Blair or New Labour. The Conservatives have attacked the attack on the Bedroom Tax (or “Spare Room Subsidy”) by arguing that Labour introduced something similar for the private sector, and now this idea is being extended to social housing, despite being a socially divisive policy and incapable of generating much revenue.

 

So the idea of Ed Balls ‘trending’ is of course neither here nor there, and utterly irrelevant to the political discourse today. It doesn’t make Ed Balls any more popular, and doesn’t get round the popular anti-Keynesian attack of ‘How can the solution to borrowing be yet more borrowing?” That meme, while not viral, has been very successful in conveying a popular idea held by some that a Keynesian solution to an economy recovery is to pour fuel on the fire, or to have the ‘hair of the dog’ while suffering from a hangover due to the night before. However, it is incredibly hard to think of a punchy meme in reply to that line of attack which has been successful in the USA today. Another popular meme is, “Why would you hand the keys of the car back to the people who crashed it in the first place?” A reasonable answer to this would be to identify who actually crashed the car – was it the bankers/banks or the State, and were the problems due to the crash per se or due to ‘lack of regulation’ in the lead up to the crash? Nonetheless, both memes focus the mind on the more negative aspects of Labour’s tenure in government, and the public seem to be generally unpersuadable on the economy. The Labour Party, likewise, feel that they are still the party of the NHS, despite the well documented problems in Mid Staffs, though there is a genuine debate about the extent of morbidity and mortality even after two voluminous reports.

 

Many in all parties feel of course let down by the media, and it might appear that all parties feel equally let down. For example, most recently, some people feel that the coverage of the NHS reforms has been poor, and the media are hopeless at explaining how we have come to have just escaped a ‘triple dip’ recession when the economy was in fact recovering in May 2010. Whether you buy into the idea that ‘the economy is healing’, or this Government would like ‘to make work pay’, it is crystal clear that, whatever the nature of debate (whether it is Afghanistan or welfare), people have a markedly varying understanding of the issues – but have an equal say in the democratic process. Ed Miliband always spoke of ‘building a movement’ in the Labour Party, and by this it means that he would like to capture a sense of national pride and trust in the politics of Britain. He feels that ‘One Nation’ is the best way to do this, and the results from his detailed policy discussions are yet to emerge into the sunlight. When I used to ask my late father to cheer up, he used to say, “What do you expect me to do, Shibley? Dance?”  This is in a sense the main problem faced by Labour today, one of expectation management. The discussions of the ‘legacy’ of Baroness Thatcher were at times as finely focused on the purported successes of turning Britain around ‘from a basketcase’ to the social and economic distress (illustrated by the damage done to local communities), pursuant to the closure of coalmines in Easington. People are now muttering again, “I am to be honest very disillusioned with Labour, but this current Government are terrible”. Part of this disconnect with Labour is that people simply don’t trust them to do what they say on certain key issues, such as repealing the Bedroom Tax, or repealing the Health and Social Care Act (2012). And to be blunt, Labour’s “got previous” on this. As a result of the general election in 1997, Labour did not abolish the market in the NHS as they had promised. And yet, Labour does have a reasonably loyal ‘fan base’, and people who genuinely like Ed Miliband as a person. Miliband has always been mindful of being the guy who ‘promised too much but delivered too little’, but it will exasperate even his loyal followers if he turns out to be the guy who in fact ‘promised too little and delivered also very little.’ Ed Miliband can always play the ‘we don’t know how the economy will be in two years’ time’, and get his shadow cabinet to argue that making impossible promises would be reckless, but in the meantime Ed Miliband needs a steady trickle of bits of evidence suggesting that he is heading in the right ‘direction of travel’. For example, the idea of incentivising businesses to implement ‘the living wage’, in a socially inclusive policy which is not overtly ‘tax and spend’, is a useful one, and one which Miliband can legitimately campaign on.

 

It is hard for Labour members to tell why members of the public dislike them so much, but this is of course the challenge for Labour in the next two years. In the meantime, the challenge is to work out how many people who vote for Labour in the local council elections are doing so, not only because they are protesting against this government, but also find the offering of Labour feasible. These local elections are a timely reminder of how barmy UKIP actually might be, in promising more austere cuts than currently being offered, or what actually differentiates the Liberal Democrats from Labour in a meaningful way. The social media, it can be argued, is a great way for people to write on and discuss the issues that concern them. Without the social media, a meaningful discussion (away from the BBC) about the section 75 NHS regulations would have been impossible. However, as Baroness Williams provided in her speech last week, Twitter can easily be discredited through referring to the wealth of misinformation ‘out there’. From my own personal experience, I feel I can tell what the reaction will be from Labour members towards Baroness Williams, on issues pertaining to the NHS, before she has opened her mouth. Whilst the Ed Balls meme might be equally divorced from real debate, and, whilst it has become a popular past-time to criticise ‘armchair activists’, the role of technology in political movements cannot be ignored. Used responsibly, it can override some of the cynicism we all share, as long as a small minority of bloggers do not persuade themselves they are speaking on behalf of all of us. And possibly the “Ed Balls meme” reminds us of one very important thing relevant to all of us: we should be less obsessed about our image (but not in an irresponsible way), and should from time-to-time take ourselves less seriously.

The @NHAParty “may have been influenced in its aims by activity over Twitter”



Here is the @SocialistHealth to keep up-to-date with all the news from the Socialist Health Association [correct as of this morning]:

 

Socialist Health Association screenshot 160312

Socialist Health Association screenshot 160312

King, D, Ramirez-Cano, D, Greaves, F, Vlaev, I, Beales, S, Darzi, A. (2013) Twitter and the health reforms in the English National Health Service. Health Policy. (available online since 13 March 2013; from the Centre for Health Policy, Imperial College London, 10th Floor QEQM, St Mary’s Hospital, London W2 1NY, United Kingdom.
The importance of Twitter is explained in the introduction:

“Social media is distinguished from traditional broadcast and print media by its ‘user generated’ content – the people who read it are the ones writing it and commenting on it. A prominent social media outlet is Twitter, the global online micro-blogging social network that is accessed by millions of users every day. Twitter enables its members to post text-based messages of up to 140 characters about any topic. The short format of the message – or tweet – is the defining characteristic of the service. Twitter and other social media provide users with the opportunity to share opinions widely and to interact with and potentially influence key decision-makers. As Twitter has entered mainstream use, the hashtag appears to have come of age politically. Recent regime changes in Egypt and Libya have been labelled ‘Twitter revolutions’, whilst the re-election of Barack Obama in 2012 was termed the first ‘Twitter election’ [1]. Whilst these terms may overstate the actual role of Twitter, it hints at Twitter’s soaring popularity and potential importance.

Twitter has become a popular platform for scrutiny of the UK coalition Government’s reform of the English National Health Service (NHS) [2].”

The authors identified the importance of “re-tweets”:

“People disseminate information deemed important on Twitter through ‘retweets’. This is when someone chooses to repeat a tweet by someone else, usually because they think the content is significant enough to merit sharing further. Twitter is well suited to studying influence because the diffusion of ideas can be tagged and observed, allowing us to determine how effective different ‘messengers’ of information are [10] and [11].”

The “most influential Tweeters” appear to be based in London:

“Determining the characteristics of tweeters is dependent on what information users are willing to enter about themselves on their public profile. Looking at the 100 most influential tweeters measured by the T-index, 77 of the 100 identified themselves as being from the UK with 43 stating they were based in London. No tweeter in the Top 100 identified themselves as being from or based outside the UK.”

The authors make interesting observations on the”non-hierarchical nature of Twitter”:

“Twitter represents a genuinely diverse platform for discussing health reform. Previously doctors have often limited themselves to their own networks, such as doctors.net. Twitter allows conversations to take place between regular NHS workers and opinion leaders such as journal editors, journalists and royal college presidents. This non-hierarchical approach is attractive in allowing voices of the frontline to be heard in an unfiltered manner, however, it may also reflect the small number of people using the medium. If it becomes more populated and widely used, it is possible that this effect will be diluted.”

And, finally, the NHA Party may have been influential in affecting the Reforms:

“Although not captured in the time frame of this analysis, the subsequent development of the National Health Action party (@NHAParty), a single issue political party campaigning against the reforms, may have been influenced in its aims by activity over Twitter, and includes prominent tweeters among its founding members and campaigns extensively using social media [17].”

Avoiding defamation on the information superhighway



 

This is an academic article, and not to be construed as legal advice or opinion in any way. If you have a specific concern, you are advised to seek the help of a practising solicitor.

 

 

You can be even sued on Twitter for Libel. The recent experience of Lord McAlpine is a testament to this:

That you can end up in Court through Twitter is known to followers of the “Twitter Joke Trial”, successfully fought by David Allen Green (Preiskel & Co.), John Cooper QC (25 Bedford Row), and Sarah Przybylska (2 Hare Court) in the presence of Lord Chief Justice Lord Judge. This example is cited here only to illustrate how anxiety-provoking litigation can surround Twitter. The case itself was not about libel – it was about allegations of “menacing behaviour”, as per s. 127(1) of the Communications Act 2003.

The public has a right to criticise the people who govern them, so the least protection from defamation is given to public officials. Other people, with the resources, can of course sue you, but they have to prove that defamatory statements were made with actual malice, in most cases.

This excellent guide for Twitter users, regarding libel, has been published recently on the BBC website. Using the social media has become a ‘risk factor’ for attracting a claim in defamation, for the unwary, in the same way a cabbie may be, in theory, more likely to produce a driving offence simply by nature of the fact she or she is doing a lot of driving. This for example comes from the MoJ’s own guidance to the draft Defamation Bill:

Sim v Stretch [1936] 2 All ER 1237 provides the classic common law definition in English law:

  “A statement which tends to lower the claimant in the estimation of right thinking members of society generally, and in particular to cause him to be regarded with feelings of hatred, contempt, ridicule, fear and disesteem”. (Lord Atkin)

Article 10(1) ECHR states:

“Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without interference by public authority and regardless of frontiers.”

But Article 10(2) ECHR states that:

“The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society, in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, for the protection of health or morals, for the protection of the reputation or rights of others, for preventing the disclosure of information received in confidence or for maintaining the authority and impartiality of the judiciary”.

“Defamation” is a catch-all term for any statement that hurts someone’s reputation. Written defamation is called “libel,” and spoken defamation is called “slander.” Defamation is not a crime, but it is a “tort” (a civil wrong, rather than a criminal wrong). A person who has been defamed can sue the person who did the defaming.

Defamation law tries to balance competing interests in keeping with the very important legal doctrine of proportionality: on the one hand, people should not ruin others’ lives by telling lies about them; but on the other hand, people should be able to speak freely without fear of litigation over every insult, disagreement, or mistake. Political and social disagreement is important in a free society, and we obviously do not all share the same opinions or beliefs. For example, I do not believe in important European and US competition and procurement laws voluntarily in governing the decisions of commissioning groups in the NHS unless we have to, and I am entitled to my opinion within reason.

The rule of the Jury is to establish the standard of ‘right-thinking members of society’, and to decide whether the claimant was defamed.

What the victim must prove to establish that defamation occurred

The law of defamation varies from state to state, but there are some generally accepted rules. If you believe you are have been “defamed,” to prove it you usually have to show there’s been a statement that is all of the following:

  • statement
  • published
  • false
  • injurious
  • unprivileged

This is a MUST READ guide to defamation on Twitter by Dr Paul Bernal, who is a young leading academic in this area and Lecturer in IT, IP and Media Law at UEA.

Whilst this article has focused on Twitter, the general principles of defamation apply to all media, including blogs.

 

 

Thanks to Dr Paul Bernal for a helpful suggestion about an earlier draft of this blogpost.

Hours of fun now that David Cameron is on Twitter!



Whoever needs to switch on a TV set, buy a e-book on Kindle or an iPad, or go to cinema, ever again, when you’ve got hours of fun now that David Cameron is on Twitter?


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