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Reasons to be cheerful – my review of 2014



There were many reasons to be cheerful this year for me. One of them was going down at the invitation of Lisa Rodrigues (@lisasaysthis) for Prof Sube Banerjee’s inaugural lecture as Chair of Dementia at Brighton and Sussex Medical School.

Reasons to be cheerful

Sube called his lecture, a timely view on where we’ve got up to in English dementia policy, “reasons to be cheerful”.

Kate

Kate (@KateSwaffer) is a world class advocate for people living with dementia.

I have found Kate’s work on stigma and language particularly interesting. Kate is Chair Elect of Dementia Alliance International (@DementiaAllianc), and I expect this group, consisting in the vast majority of people living well with dementia, to be extremely influential in 2015. As this group becomes more influential, I am sure it will attract more scrutiny, and it will be necessary both to manage people’s expectations and not be unduly swayed by externalities.

Kate

The University of Wollongong (@UOW) is where Kate did her Masters of Science degree in dementia care. I only received a Commendation for my Master of Law, but that was in commercial and corporate law, and not really my strongest love. For Kate to receive a Distinction is no less than Kate deserves, and I was genuinely utterly thrilled for her.

Wollongong

Chris and Jayne

I tried to get out more this year, fuelled by seeing friends Chris Roberts (@mason4233) and Jayne Goodrick (@JayneGoodrick). Louise and Rachel from the Dementia Action Alliance Carers Call to Action (@DAACarers) have worked amazingly hard, and I have nothing but the utmost respect for this arm of English policy. Here’s a picture of me, Chris, Sally (@nursemaiden) and Ken Clasper (@ken_kenc)  at the Methodist Central Hall in Westminster.

Great pic

I do strongly believe that ‘experts’ are a potentially false concept in dementia. I certainly don’t believe in experts by longevity – people who’ve professionally been studying dementias for ages. I do agree with Chris though – people living with dementia do become experts in their own experiences at their particular times. We all can learn from this.

Chris dementia expert

Here’s Chris holding the Dementia Alliance International flyer. This was in a crowded foyer during the conference. I am not sure what we were doing at that precise second. I reckon I might have been panicking about the poster session on my findings of the use of language in the G8 summit. That poster session was very enjoyable for me, as I got a chance to chat with Prof Mary Marshall whose influence on design and dementia has been enormous at Stirling. Mary remembered me from a workshop I attended in Notting Hill once. And I remember her. She spoke with me for ages, when she had no need to at all.

Happy memory

Dementia policy in England and Scotland

I thought this was a parody of a Monty Python sketch until one of my bright Twitter followers advised me it was a parody of the Two Ronnies sketch. That’ll learn me. Anyway, here I am with Chris and Tim Lloyd Yeates (@alivetim) whom I am confident to report is one of the most polite and well mannered persons I have ever met in my life.

Famous sketch

Ultimately, I have limits to my understanding of dementia, having not lived with dementia myself to my knowledge, and definitely not been involved in a family caregiving way. I am all the time mindful there is close to a million unpaid family caregivers in the UK, who are the backbone of dementia policy. They are central to care and support. Sally Marciano is a very experienced nurse, but also knows from the closest of family connections how dementia can affect someone. Prof Alistair Burns (@ABurns1907), the national clinical lead for dementia, often remarks that when a diagnosis of dementia is disclosed, it’s not only given to the person with dementia, but to his or her friends and family. This, I feel, is absolutely true.

Sally Ann

I first met Toby Williamson from the Mental Health Foundation (@MHF_tweets) when he chaired a groupthink session in one of the fringe meetings of the Alzheimer’s Europe conference in Glasgow. We were discussing stigma in dementia, and thinking of possible strategies for overcoming stigma. Toby is at the Mental Health Foundation, and I find him extremely interesting to talk with. He shares a number of policy interests with me, namely human rights, equality and personal budgets. I name dropped Toby in a comment on Prof Julian Hughes’ excellent presentation on ethics at the annual meeting of the Dementia Action Alliance.

Toby Williamson

Thanks to Sam (@yeweestoater) for her unending support. I really value this – and I had a great time when I met Sam for the first time at the Beardmore Hotel in Glasgow earlier this year, for the clinical research network day hosted by Scotland.

Sam

I was invited by Norman Macnamara (@norrms) to a talk on global positioning systems and people living well with dementia. As it happened, I got lost on the way back to the lift of the Queen Elizabeth II conference centre, and Norman was very helpful! The Purple Angels continue to be an enthusiastic force of people raising awareness of issues to do with dementia.

Here's my impression of a duck

I have decided I am no longer going to take photos on my digital SLR camera, as something always go wrong on them. Here’s a photo of Suzy (@suzysopenheart) and Jayne not taken on my iPad as it should’ve been (like Tommy Dunne (@tommytommytee18), I adore my iPad).

Suzy Jayne shimmer

I was really pleased that Lucy Jane Masters (@lucyjmarsters) was able to make it to my book launch of ‘Living well with dementia’ earlier this year.

It was great to see Marian there (@mariannaidoo). Also, I really appreciate Beth (@BethyB1886), Dr Peter Gordon (@peterDRLOW) and Margaret Kilby (@mkilll) making it too.

Lucy is a specialist nurse in dementia, and also studying at the Brighton and Sussex Medical School. Like me, Lucy shares a passion for the positive rôle specialist nurses can play in proactive case management in dementia, which I anticipate will be an important service provision change innovation shortly.

From the archives

Travelling back to Glasgow was highly emotional for me; so was meeting people who’ve become a big part of life through Twitter. You certainly can’t fault Tommy Whitelaw (@tommyNTour) for the sheer dedication he has shown to raising awareness of lending a hand of support for caregivers. Besides, he’s a Glaswegian, and given that I was born in Glasgow in 1974, Glasgow is a special part of my own personal life.

bit fuzzy

There are people I met in 2014 – and I wish they’d come into my life earlier, really. I was always aware of the huge amount of work Agnes Houston in the Scottish Dementia Working Group was doing as well as Donna. It was only until I saw Agnes (@Agnes_Houston) and Donna whizzing around in the Alzheimer’s Europe (@AlzheimerEurope) conference in Glasgow that the penny finally dropped.

Happy memories of 2014

I don’t think I ever met Tommy Dunne until this year. Meeting Tommy and Joyce were definitely highlights of my year – and I think Suzy Webster is genuinely fantastic too. With them, there’s no bullshit at all. They exhibit kindness. They are not distracted by others – their focus and attention is a clear indication of their dignity and the amount of respect they command. I think some of the happiest times I had in total in 2014 were through the Dementia Action Alliance Carers Call  to Action (@Dementia_Action; @DAACarers). They’re the sort of occasions where you do genuinely feel you’ve known people for ages – like weddings without any of the family traumas!

Tommy

Twitter can bring with it some degree of mystique. But a general enduring trend of mine was that the people I met in real life were invariably even more impressive than how I knew them from Twitter. One clear example of this was Darren (@mrdarrengormley). I think I share attitudes and values with Darren. Darren really ‘gets it’. A real privilege to know – I’ve got a lot of time for Darren.

Utterly unbelievable

Charmaine

To say Charmaine (@charbhardy) is ‘strong’ would be to do Charmaine a disservice. I am completely in awe of how Charmaine doesn’t ‘complain’. Charmaine thinks she’s doing her best, but she’s doing infinitely more than that. I am extremely grateful for the time I had this year in going to Robertsbridge and seeing for my own eyes the garden that Charmaine works so hard on. And I am proud of everything Charmaine does. I am proud of her community. Her friends adore her (look at the bunch I met for example at the Ostrich and Tony especially). I loved meeting G who spontaneously showed me his PhD thesis from around the time when I was born (I was born in 1974). This photo of Charmaine and me was taken at University College London, where completely thanks to Charmaine I was able to attend a support group for carers of people with frontotemporal dementia. There, I had a long chat with Katy Judd. It was great to catch up with Katy, whom I remember working with at the National Hospital for Neurology and Neurology, at Queen Square, more than a decade ago. Prof Martin Rossor (@martinrossor), whom I think is wonderful, was the head of the clinical firm.

Charmaine

I’ve learnt a huge amount from the support groups this year. It also reminds me what an enormous privilege it is to know something about dementias in a professional and academic capacity, and what an honour it is to use this knowledge for the public good.

PDSG support group

I’d love to go to the Ostrich in Robertsbridge some time in 2015 for a holiday; not least as it will give me an excuse to see Charmaine G and family.

Ostrich

The international forum

Before I got a chance to finish my sentence, ‘My name is…‘, Marc Wortmann (@marcwort), CEO of Alzheimer’s Disease International (@AlzDisInt), explained to me that he knew ‘exactly who (I am)’. I had a chance to thank Marc twice this year for the work of the ADI – once for the work on national strategies in dementia, and one for his report in which the ADI recommended avoidance of the word “institutionalisation”.

Marc W

Helga in many ways is larger than life. Helga Rohra (@ContactHelga) just beams encouragement, drive, wisdom, leadership, principles, justice, realism, and charisma. A real joy to spend any time with. Here’s us in Glasgow.

The happy couple

Prof Facundo Manes (@manesf) was in the same research lab as me at Cambridge. He is one of the world experts in frontotemporal dementia now. I have extremely fond memories of his friendship at Cambridge, and he has become a lifelong friend. He is a ‘proper neurologst’, and has a huge amount of common sense as well as a real talent for research. I love his attitude to life, and the fact that he is so clearly very bright. He has taken the field of decision making in dementia into parts I could have only dreamt of, and of course I am eternally grateful for that. Facundo, as well as being a Professor at the University of Favorolo in Buenos Aires, leads at INECO – a huge tour de force in cognitive neurology and cognitive neuroscience in South America; and he is Co Chair of the research division of dementia, aphasia and other cognitive disorders for the World Federation of Neurology.

Facundo

This year, I got put onto the International Advisory Board of the ADI conference to be held in Perth, Australia, this year. I really enjoyed reviewing about fifty abstracts mainly on stigma, younger onset dementia and dementia friendly communities. I look forward to these being presented, when I attend in person next year.

ADI conference

The law

One of the biggest honours I had this year was being asked onto the Board of Governors of the BPP Students’ Association. Prof Carl Lygo (@carllygo), Professor of Law, and CEO of BPP, has been of massive support to me personally. He’s supported me through the stormiest of weather. Also, Shahban Aziz (@ShahbanAziz), CEO of the BPP Students Association, has become a true friend of mine. I get enormously proud of them both whenever I see them in real life, or on Twitter.

Carl and Shahban

In one part of my life, I thank enormously for the happy times I’ve had at BPP Law School. I not only studied for my ‘graduate diploma in law’ (and bachelor of law), but I also did my legal practice course there. This was via brief detour of doing my MBA at BPP Business School and my Master of Law at the University of Law. BPP has been a massive part of my professional and personal rehabilitation. Now, my understanding of business strategy and law make complete sense.

Here I am with Shaun (@DiasShaun) and Shahban.

Three amigos

I had the pleasure of talking to Gary at great length this year twice. Our conversations ranged from conflicts of interest to conspiracy theories. I think it’s fair to say I have met few people as thoughtful or as intellectually versatile as Gary Slapper (@garyslapper). We share very similar values. I am looking forward enormously to his new edition of ‘English legal system’, which reminds me of the second love of my life – the legal profession.

Gary

NHS

I have enormous respect for Prof Wendy Savage (@wdsavage). Wendy Savage and I share not only a passion for the NHS, although Wendy’s campaigning is in altogether different level to mine (being far superior). And Wendy, I suspect, shares similar feelings about the medical regulator, the General Medical Council, as me.

Wendy Savage

This year saw me trying to get out and about a bit more. I met Sharon (@SharonAvraham) outside the Harold Wilson room for a meeting which Jos Bell (@jos21) had brilliantly organised. Jos has worked so hard as Chair for the independent Socialist Health Association London division this year. Jos has also been a real rock of support this year, which has been tough for me. I am inevitably eternally grateful for this.

Sharon

I saw Andy Slaughter (@hammersmithandy) speak for the first time in Portcullis House. I am of course fully aware of the West London hospital reconfiguration, and I thank Andy enormously for campaigning on this issue. I am also grateful for Andy’s lead against that nasty Legal Aid and Sentencing and Punishment of Offenders Act (2012) which saw legal aid being throttled. I am a firm believer in access to law and justice, as well as access to medicine. Of course I am mindful that Sadiq Khan, currently the Shadow Justice Secretary (@sadiqkhan), will have a difficult year ahead.

Andy Slaughter

For the first and only time this year, I had an amazing smoothie and cheeseboard selection in the restaurant of the National Gallery. Like the late Baroness Thatcher, I have developed a habit of turning up to everything early. I turned up to the event in Trafalgar Square to support the NHS early. Jos knew I would. I had a great time, though.

Trafalgar

A poor start

The very beginning of my life I don’t feel was a poor start.

I am Scottish. I went back to Glasgow twice this year in fact.

Glasgow is where I was born in June 1974.

Glasgow

Undeniably I feel I’ve come a long way since that I day I had an epileptic seizure at the Royal Free Hospital due to bacterial meningitis in 2007. Things got worse when I had a cardiac arrest, and then had six weeks in a coma. While I am physically disabled now, I am happy of course that I have been in recovery from severe alcoholism for about seven and a half years now. I feel strongly that anything can happen to anyone at any time.

Discharge summary

GMC

I went up to Manchester several times in 2014 to see the GMC – my meeting with them was adjourned the first time around.

I ended up, therefore, contemplating in Starbucks.

With the free Wifi, it was like being on holiday.

It was amazing to meet @kyrakee who found me there. Kylie had just hopped off a tram, perhaps having worked out the clues from my cryptic Twitter clues?

Great photo

I know this Starbucks now, like the Arnedale Centre, like the back of my hand

Starbucks

2014 was an opportunity to apologise to the medical profession which I strongly feel that I had let down previously. My late father amongst many others would have wanted me to have made this apology to the GMC (@GMCUK).

GMC registration

It was a massive honour to be put back onto the GMC register. I don’t think I have ever been happier. To be put on the UK register having lost the opportunity to be there is a massive deal. The GMC oppose all restoration requests not because they’re fundamentally difficult; but because the burden of proof must be on the applicant to prove that they can fulfil their duty of patient safety. There is therefore a necessarily high threshold for this, and now that I am in recovery, I don’t underestimate the enormous privilege to be regulated by both the medical and legal professions.

Shibley GMC

Martin Rathfelder (@SocialistHealth) took great care of me in my numerous visits to the GMC in Manchester this year. I have very happy memories of the numerous Chinese restaurants we frequented too. Martin was a crucial component in me trying to think positively about the whole experience. Manchester, after all, had been a very sad place for me and my father back in 2006. On a different note, I currently enjoy being on the ‘central council’ of the Socialist Health Association.

Martin

I am completely in awe of the GMC. I would say that, wouldn’t I?

Happiness at last

All these life experiences encourage me to try to take life easy when I can. Like a Koala, I can present #KoalaKlaws. I can even, if pushed, go for the #KoalaKill. I therefore have natural affinity to the Koala.

Just posing

The man on the right of course needs absolutely no introduction. I think it’d be impossible for the English dementia policy to be universally liked by everyone. That I say not as means of an excuse, but because I am genuinely in admiration of how Prof Alistair Burns has served as the clinical lead for England. I met for the first time this year Alistair (here at the DAA Carers meeting at Smith Square, Westminster). I also met Sally Greengross (the Baroness Sally Greengross) for the first time this year. Sally’s the Chair of the All Party Parliamentary Group for dementia. I promised Sally in fact that I would include a chapter on arts, music and creativity in my next book. I like Sally would like to include some of the positives too in the narrative, and looking into this for Sally was a huge delight.

Alistair

Next year will be a gruelling one. The last few years have not adequately safeguarded against causing misery for disabled citizens. Legal aid was murdered. Criminal barristers were in uproar. The NHS saw a piece of legislation which imposed a heavy penalty for the first time for NHS contracts not put out to competitive tender in all cases other than a sole bidder. The record waits for A&E were a disgrace for the operational management of the NHS in England. We now have a situation where it is difficult sometimes to discharge people in a timely fashion to social care. Bringing together health and care next year, if there is a majority Labour government in the UK, as “whole person care”. The repeal of the Health and Social Care Act (2012) which turbo-boosted the privatisation of the NHS, defined as the transfer of resources from the public to private sector, is now desperately needed. I wish Andy Burnham MP (@andyburnhammp) well. I sincerely hope he can start work as Secretary of State for Health and Care in 2015.

 

Andy

Conferences: a necessary evil?

I really didn’t know what to expect in the Alzheimer Europe conference in Glasgow. I must say that people with dementia and carers were certainly not involved in any tokenistic way. I was happy to be there. Thanks to all at Alzheimer Europe for such a brilliantly run conference; including the work done by Gladwys and Jean (@JeanGeorgeAE).

Alz E poster

The conference brought me back to my academic roots – which is no bad thing.

As I grew in confidence this year, not just personally, but also in my opinion of the national train service providers and the London termini, I wanted to travel to conferences about dementia more. As the year progressed, my attitude changed from conferences wanting to sell you something, to conferences being happy places where you shared knowledge and experiences. Besides, they for me became happy places for me. Here’s James Murray-White (@sky_larking) and Chris at the Future Inn, Bristol, just shortly before our day hosted by Alzheimer’s BRACE (@AlzheimersBRACE).

James and Chris

Tommy Dunne and Chris Roberts were sat right at the front of my talk in Manchester. The turnout wasn’t massive, but it meant a lot to me that they were there. There was also somebody in the front row who was very nice to me; his mother had just been diagnosed with a dementia. To make a small difference to just one person means a lot to me. I’ve also felt this about ‘Dementia Friends’ (@DementiaFriends) – it’s not the quantity of the actions, it’s the quality.

Alzheimer Show Manchester

Getting a chance to fill a void in print about living well with dementia meant a lot to me this year.

Book cover

 

I straddle currently two professions, but I’ve been attending out of support (but not participating in, due to my disability) the legal aid walk for the last few years. Thanks so much to Bob and Natalia who invite me every year. I volunteered once pro bono in the North Kensington Law Centre, the oldest law centre in England, in welfare benefits. I had a brilliant time, and I would strongly recommend this type of work to any law student.

Legal aid walk

My books

This was a bit of sneaky product placement for my book, of course.

Alz E bag

I was totally amazed to see my book in print. I dedicated my book ‘Living well with dementia’ to my late father, but of course without both of my parents this book would’ve been impossible.

Acknowledgements

Thanks to Prof John Hodges in NeuRA, previously Chair of Behavioural Neurology at the University of Cambridge, for the support he’s given me for my first book ‘Living well with dementia’ (where he indeed kindly wrote a Foreword), and also for my second book ‘Living better with dementia’.

John
I admire Alistair’s energy, so it was extremely nice to receive this from Prof Burns earlier this year.

Many thanks to Alistair

Serenity

Above all, I was reminded from Truthful Kindness (@truthfulkindnes) this year not to worry about things which were clearly out of my control. This mantra, the “Serenity Prayer”, is how we conclude each meeting for people who’ve had alcohol problems. There comes a time when some people, having successfully survived a period of abstinence, go into a period of recovery. That’s when you get used to life in the absence of alcohol, and it’s normal. You don’t get cravings – you don’t notice alcohol – you can go into pubs without it even being an issue. So if things don’t go my way, invariably out of my control, I don’t fret about it any more.

serenity prayer

Thank you for making my year such a happy one.

Why I do “Dementia Friends”



Let me introduce to you to “Dementia Friends” (details here).

The aim is for you to learn some fundamental information about what dementia is, so you understand it better than you would’ve done otherwise.

Dementia is caused by diseases of the brain; it can affect any thinking depending on what part of the brain is affected.

It’s not a normal part of ageing; it’s important to live well with dementia.

There’s much more to a person that the dementia.

I’d like to say something which may surprise you, depending on how well you know me.

I don’t really like the term ‘dementia friendly communities’. I totally ‘get’ it is well meant, embracing the concept that people living with dementia can go out in their communities at large, talk to people, go shopping, and lead a happy life.

But there are problems with the concept. I think it ignores the fact there are so many different causes of dementia, each with different ways in which they affect a person’s life. These dementias can progress at different speeds too.

I’m also worried about inadvertently creating division. There are enough divisions in society, e.g. rich vs poor, disabled vs non disabled, sick v well, for example.

I worry about the issue that to be dementia friendly you can immediately recognise disability. I’ve always had to bite my touch when people claim you can easily spot dementia in the community, so much so young schoolchildren can spot dementia even when experienced GPs cannot.

Dementia, like all other disabilities, can be invisible.

The term ‘dementia friendly community’ poses the same issues in principle as ‘gay friendly community’, therefore, one could argue.

Nonetheless, I feel the starting point policy-wise is that there is a huge amount of public ignorance about the dementias. The media have been notorious at misrepresenting dementia; even the term ‘epidemic’ is problematic, whatever the exact truth about numbers and definition, given that there are some people who believe that the dementias are essentially contagious.

I regularly ask London cab drivers if they’ve heard of dementia. Invariably, after saying ‘yes’, those cab drivers then can’t tell me much about dementia. These are generally well informed individuals, however. They readily admit they wish they knew more.

For me, it’s easy to underestimate what people know about dementia. I did a medical junior job at the National Hospital for Neurology and Neurosurgery in it. I also did my Ph.D. in it.

But I am in no way an expert.

One of my best friends, Chris Roberts, living with a mixed dementia of Alzheimer’s disease and vascular dementia, is a Dementia Friends Champion. He says, if he is an expert, he is an expert in his own dementia at this particular time.

Jayne and Chris

Chris is on the left of the picture above; Jayne on the right. The “thing” in the middle, by the way, is a “selfie stick”, currently all the rage in England.

Thanks to the audio visual unit at BPP Law School for their helping me for my Dementia Friends sessions.

Lecturer Dementia Friends

Here’s a short excerpt of the Dementia Friends information session we gave on 4 December 2014, together with Jayne Goodrick.

Our details are here.

Dementia Friends final slide

It shouldn’t be the case that people who’ve been given a diagnosis of dementia feel somewhat frightened to tell their friends or family. We know loneliness is a big problem for many who’ve received a diagnosis of dementia in England.

I love doing ‘Dementia Friends’.

We never ‘force’ our Dementia Friends infocards and badges onto people!

Dementia Friends materials

I came to the programme with the same cynicism as many, wondering what was ‘in it’ for the charity involved in implementing it. I am genuinely worried about lack of diversity in the dementia charity sector, and potential abuse by one or two key providers of ‘dementia services’.

I also came to the programme with concerns about whether the messages or activities of Dementia Friends would be accurate.

I am generally very happy with the messages which Dementia Friends gives out, and the feedback has been overall very positive. No initiative is perfect by any means, and I think ‘Dementia Friends’ is as good a national programme, for what it does, as it could be. It was a major proposal from the 2009 English dementia strategy, entitled ‘Living well with dementia’.

The anonymous feedback we received from our December session was very positive.

Dementia Friends

The questions I regularly receive at my sessions are much harder than the ones I receive at international conferences on dementia. Such questions have included, “How can we promote the dignity of a person living with dementia?”

I think though, overall, the “Dementia Friends” initiative has succeeded.

Detailed analysis will see whether it has indeed been successful in turning ‘understanding’ into ‘action’. But I think there are currently about 600000 Dementia Friends at the time of writing is a major triumph.

Please book yourself into a Dementia Friends information session to decide for yourself. My next session is at BPP Law School in Holborn, London, on January 15th 2015. Details are here.

Another 5 years of David Cameron? I really hope not.



David Cameron
What is most intriguing in the in-depth analysis of Ed Miliband as Prime Minister is that most people I know would rather emigrate from the UK rather than to face another five years of David Cameron.

David Cameron has presided over an unbelievable mess in welfare benefits. I’ve lost count of people including myself who suddenly had their welfare benefits stopped (in my case disability living allowance due to physical disability), who just ‘fell off’ the benefits register. I had to have two appeals, and then go to a tribunal, before I was restored to the benefit I had received previously. And in the meantime there had been absolutely no improvement in my disability symptoms.

David Cameron has presided over an economy which works well for the very wealthy – but this is a dangerous time to be vulnerable. It is sheer bare faced cheek to claim the economy is healthy when it can’t muster enough tax receipts to keep public services going. A record number of people in employment, with a growing population in the UK, is short shrift for a society which cannot pay benefits in a timely manner such that a record number of people has to go to food banks. This is precisely what you get when you a bargain basement low wage economy, fuelled by zero hour contracts, with slashing of employment rights.

The Conservative narrative is a highly fraudulent one. Shortly before Lehman Brothers crashed, George Osborne had been boasting about how he would match Labour on spending commitments. So far from giving keys back to the driver who crashed the car, Osborne was the co-driver. Osborne wrote in ebullient terms about the deregulated Iceland – the one which crashed big time. It’s simply a pack of lies, needed to produce a malnourished State of public services, whereas corporates still get their cushy state handouts – such as proceeds from the privatisation of Royal Mail. This time, the Liberal Democrats, under Nick Clegg and Danny Alexander, have been first in the queue chanting repetitively their pack of lies.

David Cameron’s cardinal sin was never to mention the devastating £3 billion reorganisation of the NHS. This four hundred page piece of law, only made possible with the Liberal Democrats on the accelerator pedal not the brake, did not have a single clause on patient safety (apart from abolition of the National Patient Safety Agency). It was the wrong piece of law at the wrong time. With social care on its knees, it did nothing to make the health and care systems fit for purpose. Hospitals simply cannot discharge NHS patients in a timely fashion to social care currently. Add on top of this the chaos in A&E waits, it’s now a case that individuals cannot both enter hospital and cannot leave hospital. The NHS simply could not cope with another five months of this utter mess, let alone another five years under David Cameron.

Cameron and Hunt have presided over a disastrous NHS. How dare they.

But the legislation was not a waste of time for the people who have been behind this Government every step of the way. Lurking in the shadows of ‘The Big Society’ are the big private equity backers. They’re the ones who have controlling stakes in private finance initiative hospitals which they can slept a profit. Eye watering contracts of NHS services are being flogged off to the private sector. Even the late Harold Macmillan, a previous Tory prime minister, resented the selling off of the ‘nation’s silver’ under the prime successor, Margaret Thatcher. Privatisation is simply transfer of resources from the public sector to the private sector. You’d have to be an idiot not to understand that.

Somebody who is far from an idiot, Oliver Letwin, has explained the critical rôle of outsourcing of services (source here).

Bringing about the phenomenon

Just in case there is a hung parliament it’s become vital to think who could prop up another failed Tory administration. Vote for Alex Salmond or Nick Clegg at your peril.

Is it too little too late?



Sugar finger

We found out this morning from Dave West from an article in the HSJ that HM Treasury has agreed an unannounced £740m increase to the health revenue budget for the current financial year.

Since mainstream parties agreed to sign up to ‘efficiency savings’, a euphemism for making cuts in budgets, NHS Trusts all over the land have been trying to reconcile PFI debt with running a bargain basement staff. The current Government and key political stakeholders have resisted at all costs a national minimum staffing level, arguing primarily that this is not the overall number of nursing staff which matters but their suitability of skill sets in nursing environments.

These efficiency savings, nonetheless, have been made by NHS hospitals. Some hospitals have been more successful than others. The idiotic nature of the NHS drifting towards a market, being ensnared by the EU competition laws, that such financial assistance of hospitals come dangerously close to “state aid” which is deemed unlawful.

In England, “state aid” already exists in the form of foodbanks which have exploded in number under this Government. The consensus is that they have primarily supplied a need demanded from deserving members of the public, many of whom have been waiting for unreasonable time for benefits. This is a direct effect of the crass incompetence of operations in handling of benefits under this Government. This incompetence has seen emotional distress from people who are disabled. Some, it is alleged, have even taken their own lives.

The problem with running the country’s “safety net” in such a ‘lean matter’, means that there is no reserve in the system. If a nurse or Doctor goes off sick, the entire rota is thrown into chaos. The NHS ends up chasing its own tail, for example by employing expensive locum staff when it has not had the competence to employ the correct number of staff in the first place.

The mainstream political parties are still, overall, committed to the ‘private finance initiative’, although there have been some noises about how little value for money it represents. Despite the successful campaigning by some on the NHS, the political motivation for providing a solution to this problem appears lacking. There is an issue not only about the exorbitant demands of loan repayments, akin to a corporate ‘Wonga’ strangehold on the State’s finances, but also how private equity firms seemed to have got an amazingly good deal out of it effecting having a level of control and ownership on NHS hospitals which the general public, if they know, would balk it.

The next Labour Government is expected to introduce ‘whole person care’. Everyone agrees that social care is on its knees, but invariably most people agree that this situation has not come about suddenly in the last few years. There has been an insidious promotion of marketisation in the social care sector, which Labour had much to do with. Anyway, living in the now, the social care sector is in utter chaos. NHS hospitals are not able to discharge, often, their patients into social care in a timely fashion. Health and care sectors are intimately dependent on one other.

There is a growing feeling now that the drift in health and care policy across several governments, with a feeling of ungenerous funding, PFI, personal budgets, etc., albeit catapulted with the chaos over competitive tendering over the Health and Social Care Act (2012), has somehow resulted in an almighty mess. Like Lord Sugar, people are scrabbling around for a quick fix, but this is not going to be easy. Some of the strategies are clearly ‘science fiction’, unmarketable, or incapable of any teamwork. There appears to be too many Chiefs and not enough Indians. To coin the phrase by David Cameron, “We can’t go on like this?”

But in the meantime – the first management step must to be to say to Mr. Jeremy Hunt those immortal words…

“You’re fired”

We need to talk about the NHS



nhs ribbons

I’m essentially in two minds about whether the NHS is ‘a political football’.

On the one hand, I don’t think it should be.

I felt the way Mid Staffs meant some hardworking staff in that region came to be pilloried and demonised by the media was more than indecent.

On the other hand, I think you can clearly apportion blame for the current Government’s performance about A&E waiting times and other key metrics.

On balance, I’d like Labour to have a strong majority to get through repeal of the Health and Social Care Act (2012), without say relying on the Liberal Democrats who enacted it in the first place.

There’s also important legislative work to be done in bringing together health and care; and also an Act of parliament to consolidate regulation of clinical professionals.

While I have much sympathy for NHS campaigners, I most certainly do not want a weak Tory-led Government because of incessant criticism of Labour.

There is a huge amount to discuss about the NHS.

I believe, for example, that the private finance initiative, whilst it had a useful aim in improving the infrastructure of buildings of the NHS, clearly did not represent value for money.

I don’t think it’s ever justifiable to bring in the private sector because the NHS can’t ‘cope’. I don’t see why you should want to bring in locums either, because of ‘unforeseen circumstances’.

And, in total agreement with Jackie Ashley at a fringe meeting of the Fabians this year, there needs to be had somewhere a discussion of how health and care sectors are to be properly funded.

There is almost universal agreement that the NHS cannot function at anywhere near its best with social care in such chaos.

I do blame a supine media for not allowing discussion of ‘whole person care’, or discussion of topics that even Labour would like to talk about (such as PFI; see Margaret Hodge’s remarks).

We’ve got some brilliant brains involved – Prof Allyson Pollock, whose brilliant analysis of PFI shines, has had some very pertinent points about the Clive Efford Bill with Peter Broderick. Yes, Andy Burnham MP does not support ISPS/TTIP, but this policy is still being left hanging in an uncomfortable way.

I am fundamentally a socialist, so I take the perspective that if we’ve got money for war we’ve got money for the health service. And I think with debt going through the roof, and with the economy being fuelled with insufficient till receipts, we are a long way from the energy which saw the NHS created in the first place from the spirit of ’45.

Whilst supporting Labour, I don’t wish this to descend into tribalistic nonsense. I will support anyone who has decided that the current performance of the NHS is unacceptable, but I have no intention of actively campaigning against Labour.

I personally wish to see policy for living well with dementia progress under Labour, irrespective of whether Ed Miliband can eat a chip butty.

Whatever, we certainly need there to be a public discourse about the NHS more than Europe or immigration, for example. Socialism is social-ism; if you want to see how collectively we can pull through, just look at the energy generated by Jon Swindon (here) or Eoin Clarke (here).

My Christmas message!



Merry xmas 2014!

 

Merry Xmas

Hi,

 

My name is Dr Shibley Rahman.

 

Some of you will know of my existence from Twitter or Facebook.

 

You may have even met me in real life.

 

I would like just a few minutes of your time.

 

I’ve always felt that anything can happen to anybody at any time.

 

And my heart goes out to you if you can think of things which brought you particular sadness this year.

 

I entered a coma in 2007 due to bacterial meningitis.

 

I had been resuscitated from a cardiac arrest by the emergency on-call at the Royal Free Hospital.

 

From that experience, I became physically disabled.

 

But it is true that I owe my life to the NHS.

 

I had been an alcoholic.

 

I have now not touched a drop from alcohol for seven years.

 

I am now back being regulated by the General Medical Council (GMC).

 

I in fact went to Manchester several times for this purpose this year.

 

I’d like to thank Martin Rathfelder for looking after me then during this anxious time for me.

 

It was nice to be recognised by a Twitter follower in fact – that has never happened to me before!

 

Hello to Kylie.

 

I tell London cabbies all the time, that it’s not how you fall.

 

It’s how you get up again.

 

I am also regulated by the Solicitors Regulation Authority.

 

I have told friends in private that being back on the Medical Register is the biggest honour of my life.

 

I love the medical profession.

 

I welcome the publication of the independent report of unexpected deaths of Doctors awaiting Fitness to Practice outcomes.

 

I know myself of two Doctors who died during this painful period.

 

I am aghast how little attention there has been to this in the mainstream press.

 

But I am not altogether surprised.

 

I would nonetheless go onto happier things for me.

 

Having completed my pre-solicitor training last year at BPP Law School here in London, I have been asked to be a member of the Board of Governors for the BPP Students Association.

 

This is a real honour for me.

 

Next year, BPP will be participating in the National Students Survey.

 

It will be valuable for us, I feel, to treat this as a learning exercise.

 

I believe feedback is important for any organisation that wants to learn.

 

I have no doubt, though, BPP will shine in the process.

 

I love the legal profession.

I have been dismayed about the murder of legal aid and the fact the barristers were completely exasperated at the way they have been treated.

 

I had tea with Prof Gary Slapper twice, putting the world to rights, on subjects ranging from conflicts of interest to conspiracy theories.

 

This year has also seen me reconnect with dementia as well as the medical profession.

 

I am particularly grateful for the clinical lead given by Twitter pal, Prof Alistair Burns.

 

I did my Ph.D. in dementia at Cambridge under Prof John Hodges.

 

I later then did my junior medical job at the National Hospital for Neurology and Neurosurgery, under Prof Martin Rossor.

 

I both have the utmost of respect of them.

 

This year has seen a volte face with me and conferences to do with dementia.

 

At the beginning of the year, I was resolutely against attending conferences.

 

For me, they had become synonymous with people selling things.

 

Nonetheless, I’ve had a wonderful time, being invited to various conferences.

 

I loved “The Alzheimer’s Show”, both in London and in Manchester.

 

I went to Copenhagen later this year for the Alzheimer’s Association conference.

 

In Copenhagen, I had a long chat with Martin Rossor.

 

I was actually in Copenhagen at a book stand.

 

I have had good feedback about my book, “Living well with dementia”.

 

This was published by Radcliffe Health in January 2014.

 

At its peak, it reached number 3 on Amazon even.

 

This, rather than being a slogan, is the name of the 2009 English dementia strategy, co-authored by Prof Sube Banerjee.

 

I met Sube twice this year in fact; once having been invited by Lisa Rodrigues down to his inaugural lecture as Professor of Dementia at Brighton and Sussex Medical School.

 

And secondly at the Dementia Action Alliance conference the other day at Westminster in the Methodist Central Hall.

 

That was the same venue as where I did my written exam for the diploma of the Membership of the Royal College of Physicians in 2004.

 

I passed that.

 

It’s the same venue as my graduation ceremony for my Master of Law.

 

I passed that too.

 

It’s the same place where Clem Attlee organised a rally after winning the General Election of 1945 by a landslide.

 

For that election, a different man had asked ‘to finish the job’.

 

His name was Winston Churchill.

 

The Methodist Central Hall’s also the same venue where I met Andy Burnham for the first time ever.

 

I had the pleasure of meeting Andy this year at a local meeting of Labour down in Southwark.

 

My good friend, Jos Bell, invited me.

 

I think “whole person care” will be pivotal in integrating health and care when it is finally introduced by the Labour government.

 

Health and care services are fundamentally dependent on each other.

 

When one is in chaos, the other quickly feels the effects.

 

NHS and care are not simply ‘political footballs’.

 

They’re literally a matter of life or death.

 

Tom Flynn was there too: he’s a friend of mine, and of Jos.

 

Tom knows Jos Bell, who has become a very good friend of mine this year.

 

Jos I feel really understands what I feel about stuff.

 

I met Chris Roberts and Jayne Goodrick in Manchester.

 

Since then, I’d like to say we’ve become good friends.

 

Indeed, I then met Chris and Jayne at the Alzheimer’s Europe conference in Glasgow.

 

That conference was on dignity and autonomy.

 

I was generally impressed by all the people working in dementia policy in Scotland.

 

I learnt loads from them.

 

We’ve moved a long way from tokenism, I hope.

 

We’ve moved onto a more rights-based approach, advanced by equality and human rights.

 

Through this legal lens, I hope we may move aspirational friendliness into enforceable parity.

 

That conference in Glasgow was very special for me, where I met Helga Rohra and Agnes (and Donna) for the first time.

 

It is also where I was born in 1974.

 

In the space of that time, I feel as if I’ve been dragged through a hedge backwards.

 

But when I look at people I admire, like Clare Lally, also from Glasgow, I feel humble.

 

I met Tommy Whitelaw in the clinical research day at Glasgow for the first time this year.

 

When you meet truly magnificent people, any achievements you have get totally dwarfed.

 

Somebody who totally dwarfs me is Kate Swaffer.

 

It’s not that Kate remembered my birthday.

 

Nor the fact she has taught me the majority of what I know about dementia policy.

 

Nor is it the fact that she got a Distinction in her Masters of Science in dementia care at Wollongong last week.

 

It’s much more than that.

 

I hope to be seeing Tru, Chris, Jayne, Kate, Pete and Boris next year around time of the Alzheimer’s Disease International conference in Perth, Australia.

 

I am on the international advisory board for that.

 

I reviewed about 50-60 posters for that conference.

 

They were all of a superb standard.

 

Next year, my trip to Oz will come just before my next book, ‘Living better with dementia’.

 

Chris Roberts suggested the title.

 

And Prof Alistair Burns is doing the main Foreword.

 

I am honoured at this.

 

And the fact that Jessica Kingsley Publishers are publishing my book.

 

So I’ll leave it there.

 

This year wasn’t too bad for me.

 

I only blocked a handful of people on Twitter.

 

Conversely, there are some brilliant people on Twitter whom I have met in real life.

 

Jenni Middleton, editor of Nursing Times.

 

Mandi and Alex Andreou, Spurs supporters.

 

Comrade Nick Cohen.

 

I find ‘round robins’ telling me how wonderful people are at Christmas quite annoying.

 

But I wanted to thank you for your friendship and most of all how much you’ve taught me.

 

 

 

The importance of the ‘lived experience’ at the Alzheimer’s Disease International conference in 2015



This year, the Alzheimer’s Disease International under Marc Wortmann has done outstanding work.

It is known for its huge impact in allowing nation states to flourish with dementia strategies

Its output is phenomenal (see for example this latest paper). I have no doubt whatsoever ADI will continue to flourish under Glenn Rees, the incoming Chair (currently Chair Elect).

I’m still very excited about the 30th International Conference of Alzheimer’s Disease International “Care, Cure and the Dementia Experience – A Global Challenge” 15-18 April, Perth, Australia, next year.

People who are very close to me will be there.

It is, also, a lovely city.

Perth

The conference website is here.

It was always emphasised that this conference would showcase the lived experiences of people with dementia. People living with dementia and caregivers were indeed encouraged to attend.

Lived experience

This is a part of the list of posters to be presented on Thursday 16 April 2014.

Posters

The two submitted by Chris Roberts and Truthful Kindness are shaded in a dark red.

The titles most clearly say ‘lived experience’ in the titles.

They were submitted as oral presentations, as the two people involved did not want them as poster presentations.

Indeed they did not opt for the ‘poster/oral’ option specifically for that reason.

P057
Communication with the world about my life’s experience with dementia after diagnosis
Truthful Kindness
Arts and Engagement
United Kingdom

P052
Living well with dementia: a lived experience
Chris Roberts
Arts and Engagement
United Kingdom

 

Truthful Kindness’ affiliation is Dementia Alliance International, Iowa; it was never submitted as United Kingdom. The irony about Truthful’s intended oral presentation is that she wished to explain how people with dementia can use all sorts of media to express themselves artistically and creatively. Arts and creativity is a huge policy plank in living well with dementia internationally.

It would have been clear to any diligent reviewer of these abstracts, from their submitted biographies, that both Chris and Truthful were genuinely living well with dementia.

Here’s Chris even holding the flyer of the Dementia Alliance International group, at Glasgow earlier this year in the Alzheimer’s Europe conference on dignity and autonomy in dementia.

Happy memory

Chris is currently a Board member of the Dementia Alliance International.

I understand, from having spoken to one of the juniors at the Alzheimer’s Disease International, that there may even be a chance for poster presenters to give short oral presentations of their work. But I think this possibly may be worse.

It has been explained to me that the environment for the poster sessions is very off putting. It is a crowded room, with not much space for the poster itself. It is a very noisy environment, which is very distracting. In other words, this can be an environment which is potentially disadvantageous to people with early dementia who wish to present.

I am, of course, pleased that the keynote speakers for this conference include two friends of mine, and whom I admire massively, and who are living well with dementia, Kate Swaffer and Helga Rohra.

As is known, I consider Kate to be exceptional in every way.

These are two symposia from the scientific programme in which they might have appeared: “younger onset dementia” and “engaging people living with dementia”. From eyeballing the titles of these talks, I don’t see many speakers talking about their own personal lived experiences.

symposia

The only parts of the conference yet to be revealed are the ‘workshops’.

The details of the workshops are given as follows:

Day 2 Dementia Friendly Communities
Day 2 “How to” topic to be confirmed
Day 3 Clinical trials
Day 3 “How to” topic to be confirmed
Day 3 Arts and dementia
Day 4 World Alzheimer’s month
Day 4 “How to” topic to be confirmed

I am extremely honoured to be on the international advisory board for the 2015 conference. I should therefore not want to criticise the organising committees in any way for their hard work.

But I cannot be a silent bystander to this either. The whole point about viewing dementia as a cognitive or behavioural disability secondary to a brain disease is that it then comes under international and domestic laws (for example, for UN Convention for people with disabilities and the Equality Act).

Ignoring two people’s wishes to have an oral presentation, as they cannot do poster presentations, is not making reasonable adjustments for their disability, one could easily argue.

I understand that the number of people with dementia fluctuates year on year, so it can be difficult to predict the number of people with dementia who wish to present. But, even with the limited number of places for the two symposia I have cited above, there doesn’t appear to me a big representation of people living well with dementia amongst the speakers, but I could be wrong. This also seems to be the case for other symposia, notably the one on “dementia friendly communities”?

I think the Alzheimer’s Disease International conference 2015 will turn out to be a brilliant opportunity for us to meet up; and we will also get a chance to discuss ‘cure’, ‘care’ and ‘living well’.

But Richard Taylor, living himself with a dementia, is right in his presentation from last year – where is the representation of evidence of psychosocial techniques?

I’d like to ask where is the evidence looking at ‘living well’, such as GPS trackers, design of wards, design of houses, the wider built environment, incontinence, eating well, assistive technology, ambient assisted living, advocacy, and so on?

On that note, I do strongly applaud the work of ‘Dementia Alliance International‘, which is truly representing the community of people living with dementia.

We hear words such as ‘challenge’ being used all the time in relation to dementia.

Hopefully the organisers will rise to the ‘challenge’ of living up to the reasonable expectations of those people with lived experiences wanting to take part fully in the ADI conference 2015 in a format they feel most comfortable with (and which makes reasonable adjustments if required).

A wellbeing economics prism to ‘dementia friendly communities’



wellbeing image

There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.

There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.

There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.

Another consensus is to be found in wellbeing, or living well.

I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):

“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”

Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.

This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.

One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.

I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.

As the O’Donnell Report puts it, wellbeing:

‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.

There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.

But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.

The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.

In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.

Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.

These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.

Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.

It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.

I feel that this touches upon another tension of dementia policy, this time at a global level.

We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.

Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.

There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.

But this I genuinely think would be to analyse the issue too much but with one important proviso.

That proviso is that I don’t think you can value people simply in terms of their economic productivity.

I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.

In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.

This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.

But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!

Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).

There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.

The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.

But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.

The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.

If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.

Other jurisdictions might even follow suit.

 

 

 

 

Recommended reading:

Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2

Wellbeing in four policy areas: Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf

All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447

Continuity of care and support is vital in dementia policy. We are a long way from that.



plan into action c of care

In a way, the second ever English dementia policy poses more of an acid test than the first one. The reason for this is because we already have a set of yardsticks by which the first five years can be assessed, with a view to projecting forewards.

I don’t doubt the enthusiasm with which we have tried to close the ‘diagnosis gap’ in England. The heart of this is the high quality diagnosis, as stipulated in the original policy co-authored by Prof Sube Banerjee at Brighton and Sussex Medical School. What we have tended towards, rather, is a culture of high volume mediocre quality. And people readily admit they would rather wait that little bit longer to get the correct diagnosis.

I do not subscribe to the idea that anyone can easily make a diagnosis of dementia. When a diagnosis of dementia is finally given, it’s given not just to the person with dementia, but to his or her friends, or her family. As Kate Swaffer says, she is not a person with dementia primarily; she is a person with friends, family and feelings.

This approach prioritising the person has to be right from the word go. We are all persons, but we become patients when we become ill enough to present to the health and care services or not. We become paying consumers when we part with money. We are consumers if we spend any resources from the pot of money paid into from national insurance.

And so on. This analysis of money is a sideshow only as far as to how to service is delivered is actually matters. If you have services in dementia and support commissioned in a highly piecemeal manner, at worst from clinical commissioning groups who don’t know what wellbeing is, nor what they’re looking for, it can be a mess.

The hunt is definitely on for effective commissioning as well as any commissioning at all. The next Government will have to provide much better clarity on this, and some objective guidelines on how, say, the delivery of wellbeing might be ensured on an ongoing basis, not just at the start and finish of a commissioning contract.

But it is the fragmented approach from different providers which is a threat. Low pay of carers, not meeting the national minimum wage, or zero hour contracts, is a problem, and the reason specifically why private providers can be an issue here is that large corporates with scrupulous employment practices can hide behind a veil of being unperturbed from freedom of information legislation.

It is very easy to argue that entire health policy, and even dementia policy, is not political. I don’t believe this is justifiable for a minute. How we prioritise care at all is a reflection of our collective solidarity as a society, and our success in ‘pooling risk’. If I know for example I have a high genetic risk of developing a dementia from my genetic make up, my insurance premiums is likely to go through the roof unless there is tight anti-genetic discrimination law in place in England (which there isn’t).

Having a piecemeal system promotes lack of continuity of care. I think this is fatal for any new English dementia strategy. I think this piecemeal system, whether an artefact of private markets or not, or political ideology, can adversely affect people living with dementia and carers in a number of different ways.

First of all, the caregiver relationship, whether paid or unpaid as carer, fundamentally depends on that caregiver knowing the person with dementia. The happiest relatives I have ever spoken to are the ones who report that they haven’t had a regular changing of the guard as regard carers. This is important for building meaningful relationships with time, as people with Alzheimer’s disease for much of their time, even if they have weak memories for events have strong enduring memories for emotions. Besides, change here can be very distressing, and mental distress can impact on lack of physical wellbeing (although ill being is not necessarily the same as lack of wellbeing).

Secondly, continuity of care by a physician or an appropriate specialist in clinical psychology acts as a safeguard to check the actual diagnosis is right. Some initial cognitive impairments do not progress – they remain mild. A ‘wrong diagnosis’ of dementia does not necessarily mean someone has goofed up as such – it could mean that something that was predicted to progress didn’t. The drive to diagnosing dementia, particularly with financial incentives, could mean we accidentally mislabel mild cognitive impairment as dementia, and this is clearly a tragedy for all involved.

Therefore, a diagnosis disclosure can never be a single hit and run event. There needs to be follow up from the system, whether it’s by the same GP, a hospital physician or psychiatrist, a different member of the memory clinic possibly somewhere totally different; a second ‘set of eyes’ to see whether the initial diagnosis is correct. Granted I agree that knowing what the diagnosis is can be the key to opening services, being armed with information and hence empowered, and all the usual arguments, but the diagnosis must be correct. There is no alternative on this.

Say, for example, you are in fact depressed, not living with dementia, and a clinician in a hurry informs you you are living with dementia. You have presented in response to the question, “Do you have problems with your memory?”. Such a misdiagnosis is likely to make you even more depressed; and not receiving effective treatment for depression, whether as a psychological therapy or medication, or otherwise.

Thirdly, somebody who knows a person well will be able to spot when a person with dementia changes in any way. This could be a ‘difference’, such as the development of a sweet tooth, a ‘deterioriation’ such as in memory, or even an ‘enhancement’ as in acquisition of a love of music, or artistic and creative talents. You can only ascertain this with time. This is where the idea of the review has to change fundamentally.

I don’t feel this review should take place in the hands of medics who repeat scans and tests, ask a few random questions, and document the decline (as dementia is progressive if it is not ‘reversible’ such as vitamin deficiency). Implementation of a ‘year of care’ for dementia, or a national network of clinical specialist nurses, will be able to manage a caseload of individuals living well in a pro-active fashion, each with an individualised care plan; where the goal is to live well, not to firefight in a crisis.

Fourthly, the fundamental crunch time for a person living with dementia is an inability to retain information for a decision, an inability to make that decision, and an inability to communicate that decision. The starting point is that we can make decisions or have ‘capacity’. This capacity can come or go; and it’s dangerous if we get into the mindset that capacity is all or nothing, but that is the legal shortcut we have in place.

But this capacity needs review on a regular basis, as it fundamentally changes our view as to whether a person can consent or not. People living with diffuse lewy body dementia, for example, can notice themselves one day they’re performing quite well, other days not so well. If we don’t get into the good practice of reviewing capacity and consent on a regular basis, through continuity of care, we will easily arrive at a situation where people are languishing inappropriately on medications. It’s generally felt that, while appropriate for some, antipsychotics prescribing is too high, often inappropriately; some side effects such as drooling of the mouth can be very distressing. It’s currently, rightly, a plank of policy to address the inappropriate prescription of antipsychotics particularly in care homes.

In summary, the ideal would be somebody to accompany a person from the point of diagnosis to the time of end of life; not chopping and changing. I was told by a senior specialist nurse at the National Hospital for Neurology and Neurosurgery, Katy Judd, that one of the most disturbing phenomena for persons with dementia and families is when their ‘contacts’ have ‘moved on’ on such a frequent basis. There clearly needs to be proper signposting with the system, known as care coordinators, but we need to avoid the situation where there is an abundance of signposts and a dearth of frontline care.

But I feel fundamentally continuity of care and support is critical. Having the same mutual followers on a social network on Twitter has the potential to improve wellbeing, and having somebody there by you that you trust is likely to have the same effect. People living with dementia who are stimulated psychologically by positive experiences are likely to find their experience fundamentally of a different nature to those who don’t.

For these reasons I feel that, whatever tactics are used, and whichever government is in office and/or power in England, for the next few years, an overall strategy of prioritising the continuity of care is pivotal.

The spirit of 2015



In the Peasants’ Revolt in 1381, John Ball said, “Nothing will go well in England until all things shall be held in common”.

I went to Trafalgar Square, just downstream from Piccadilly, in London for a huge NHS rally earlier this year. It’s where crowds had also gathered in 1945, for VE day to celebrate winning the Second World War.

that was then this is now 2

As we face a general election on May 7th 2015, something akin to the ‘spirit of ’45” arguably needs to be mobilised. It is sometimes easy to escape seeing the wood from the trees, with discussions firmly footed in the immediate, such as a leaked memo by Labour on immigration, or a brouhaha between Russell Brand and Nigel Farage.

We still need the same type of military discipline to build a Britain fit for purpose for peacetime. Successive mainstream governments have allowed themselves to sing to the neoliberal tune. It’s clear that in some places this hand has been overplayed, such as the ‘benefits’ of competition to the NHS. Because of the ‘market’ in the NHS for the first time under this Government, a hospital merger reasoned on the basis of clinical need could not take place because of competition law.

We’ve been sucked into this false narrative, and we are still not free of it. But if we return to a collective spirit anything is possible.

Whilst both Margaret Thatcher and Winston Churchill clearly wanted the words of FA Hayek (“The Road to Serfdom”) to be widely read, it is a sad admission that the market is not in fact liberalising; it can be best described as positively “enslaving”.

Markets free from public ownership are dogged with waste and inefficiency. Water and gas are homogenous products; they form natural monopolies which need to be organised properly.

In 1947, the UK parliament set up the British Transport Commission. One of the first steps was to abolish in Euston around the time, the ‘clearing house‘ of hundreds of clerk to oversee the administration of transactions between private companies.

Move forward to the time of this Government, some private outsourcing companies have also been dogged further with illegal fraud allegations. They also escape the Freedom of Information Act.

Very few of us want a NHS where your access is treatment is dependent upon your ability to pay. But only today it was reported that acute dermatology services would be taken out of scope in Nottingham and Lincoln for example.

It remains the case that Governments should respond to people’s needs, and have people with a strong public service interest to organise facilities around these needs. The primary driver cannot be profit, especially excessive profit. The section 75 clause of the Health and Social Care Act ram raided the NHS with competitive market tendering. The result has been some mouth watering contracts go to the private sector; this is privatisation, meeting the WHO’s own definition of the transfer of resources.

We want a world where the world is adapted for needs, and democratic.

It’s not a question of buying influence with money. The most effective route to exerting influence is the careful use of the democratic vote. A vote on Farage is likely to be an opportunity missed, when you could vote for the full integration of health and care services or ‘whole person care’.

We should NOT fight with each other.

Nurses should not struggle on and on, many without pay rises, creating value in the NHS, while private equity cream off proceeds from the wealth that they create through a series of abstract transactions.

Nurses and all workers including allied health professionals and doctors OWN the National Health Service – the City shouldn’t.

The Beveridge Report spurred us on as a country to combat five giant evils.

As described in an article in the Guardian earlier this year,

“Beveridge, however, was on to something in basing his report on the need to tackle five “giant evils”: want, disease, ignorance, squalor and idleness. His list has stood the test of time so well that when the IPPR thinktank published recently its Condition of Britain analysis, it revisited the five topics for an update. Verdict: work still in progress.”

“Want” is still a problem with many people needing to ‘top up’ their income with working tax credits. It doesn’t matter if we have a record number of people in employment, if these people are underemployed. They are working, but they are still poor.  A spirit of 2015 needs to address abuses of zero hour contracts. Too many paid carers are providing care in fifteen minute slots, not being paid a proper wage, and not being paid adequately as power towards scrupulous employers has again swung too far.

Idleness is not a criticism easily levelled at men and women who are working extremely hard, and finding it hard to make ends meet with a rampant cost of living crisis. We want resources to be distributed properly, so no longer fat cats are sitting on huge salaries while there’s misery.

What has happened over welfare benefits, with an army of disabled citizens burnt out with worry, is a public disgrace. The UK should be proud of its value where we all pool risks and we all feel responsible for everyone else: we are our brothers’ keepers. As a civilised country, we should be ashamed if we don’t care for disabled or elderly members of our society, for example.

If resources could be organised properly in the Second World War, our resources can be organised properly now. Why has inequality got considerably worse under Thatcher’s government and beyond?

Things are so bad that members of the general public have utter ignorance about their legal rights being demolished. 2012 saw the Legal Aid and Sentencing and Punishment of Offenders Act and annihilation of English law centres. Furthermore, Chris Grayling who has never done a law degree so can be reasonably expected to be ignorant about aspects of the law has presided over demolition of judicial review and privatisation of probation.

The Commonwealth Fund found recently that the UK has one of the best health systems in the world. Put simply, the NHS won’t be able to survive another unexpected top down NHS reorganisation from the Conservatives designed to privatise the NHS yet further. We have 800 000 people living with dementia, and yet we have social care on its knees. Despite the high profile ‘Prime Minister’s Dementia Challenge’ and G8 dementia, one can rightly moot whether Pharma has benefited more than people living with dementia or caregivers.

No party wishes to doubt the prestige of the National Health Service, even though the Conservatives and Liberal Democrats produced the legislation in 2012 to turboboost its destruction.

Whereas Nye Bevan joked at the time of the creation of the NHS, ‘doctors’ mouths were stuffed with silver’, almost seventy years later corporate competition lawyers’ mouths were stuffed with silver.

Squalor does exist still. It is tempting to want to believe squalor doesn’t exist. But it does (as shown here).

As Tony Benn warned numerous times, politicians go round and round in circles.

Winston Churchill wanted after 1945 for the Conservatives to lead the UK to prosperity.

Winston Churchill wanted in 1945 to be given “the tools to finish the job”.

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The Daily Express on the morning of the general election in 1945 urged voters to return Mr Churchill.

Clem Attlee for Labour, on the other hand, won with a landslide.

In 2014, David Cameron has asked for a mandate to lead the UK to prosperity and to ‘finish the job’.

You know what to do.

 

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