It’s well known that I survived a six week coma on the Royal Free ITU in 2007, after having had a cardiac arrest and respiratory arrest simultaneously.
I am only motivated doing my work promoting wellbeing for people beyond a diagnosis of dementia (TM – Kate Swaffer’s term), and motivated by my mum’s happiness.
The lyrics of David Bowie’s “Lazarus” have enormous personal significance for me.
Look up here, I’m in heaven
I’ve got scars that can’t be seen
I’ve got drama, can’t be stolen
Everybody knows me now
Look up here, man, I’m in danger
I’ve got nothing left to lose
I’m so high it makes my brain whirl
Dropped my cell phone down below
Ain’t that just like me
By the time I got to New York
I was living like a king
Then I used up all my money
I was looking for your ass
This way or no way
You know, I’ll be free
Just like that bluebird
Now ain’t that just like me
Oh I’ll be free
Just like that bluebird
Oh I’ll be free
Just before christmas, I made a quick tweet as follows.
Since then, I have watched this tweet progressively get retweeted to the point of ‘going viral’. At the time of writing, it has had 287 ‘retweets’ and 250 ‘favourites’.
Of course, no one can predict how, why, or when a tweet might go viral, though plenty of people have speculated on this phenomenon. Here is one example.
In case you missed it, the story begins as follows.
“Pianist Edward Hardy played in a jazz quartet for almost 40 years but had no one to play with after being moved into a care home following the onset of dementia.
Care home worker Sam Kinsella helped him post an online advert to bring in musicians to jam with the talented war veteran.”
The home in Somerset, was inundated with more than 80 requests from across the UK, including from three former band mates who he hadn’t seen for 35 years. Mr Hardy had set up his first band when he returned from serving in Japan in World War II, but had become depressed when he recently moved into the care home initially leaving his wife for 75 years, Betty, 91, at home, and was diagnosed with dementia.
Apparently, he has remembered the skill of playing music and “play it so well and it’s like everything comes back to him when he’s on the piano.”
I think one of the things which most surprises me about life in general is how binary or polar things can become. One person’s valid scoop is another person’s political manipulation. Decisions we make are simplistically ‘Marmite’.
I don’t believe you can wake up one morning ‘with dementia’, when you didn’t ‘have it’ on the previous day. I do think it’s possible for fit the criteria one day with you not having met them previously. This brings up the issue of how we define the various dementias.
And the diagnosis does matter. For example, if you get re-diagnosed as ‘minimal cognitive impairment’ instead of dementia this can make quite a big impact on your life, especially if you have lived for years as a person with dementia.
I don’t think NHS England appears to care enough about validating or confirming diagnoses of dementia. I have been surprised by how many people living with dementia are not sure where the diagnosis came from, nor even who made the diagnosis.
But I do worry when there are powerful external factors at force. I think we get onto dangerous territory if you incentivise doctors financially into making a diagnosis. This NHS England policy was not only unethical, but morally repugnant. I agree on the need to ‘close the diagnosis gap’, but I do not agree on giving people who don’t have a diagnosis of dementia a diagnosis.
Overall things, though, are going well. There’s much more meaningful involvement, as opposed to meaningless involvement, of people living with dementia and carers now in research and service provision. I really do wish England and Wales well if they develop a working group in the future. The Scottish lead has been very useful here.
Scotland often, I feel, leads England through the work of Alzheimer Scotland. For example, there is a much more coherent construct of integrated care through their “eight pillars”. In comparison, efforts through the Better Care Fund in England have been piecemeal, unpredictable and sometimes unimpressive.
Scotland now, I feel, can strengthen their lead on human rights. Their influence on Alzheimer Europe is not insubstantial, but Alzheimer Europe can become emboldened on taking a lead on human rights as Netherlands assumes the Presidency from Luxembourg.
I wish to applaud Prof Peter Mittler for his brilliant work. From my viewpoint as an academic, it will be hugely useful if we can look at quality of life and wellbeing in the WHO sustainable cities. I have high hopes from the Dementia Alliance International, and I am genuinely enthused by the lead taken by Glenn Rees recently appointed as Chair of Alzheimer’s Disease International.
With human rights, you get them all. You can’t choose, as such, which rights apply to you. Thanks to the UN, they all do under the UN Universal Declaration of Human Rights.
But things might not be all or nothing ultimately for personal budgets. The power of the National Health Service comes from a comprehensive service, free at the point of use, but this is undermined if there is creeping rationing of services (possibly at the individual level through personal budgets).
Things might not be all or nothing if a universal NHS is somehow bolted onto a means-tested social care framework. We’ve got to stop airbrushing ‘social care’ into ‘and care’, and we’ve got to think about pumping money into social care, into promoting wellbeing.
I dare say the binary articulation of the debate is what ‘campaigns department’ of Big Charity advises – a simple message which is easy to brand or sell.
In her annual message today, the Queen said: “It is true that the world had to confront moments of darkness this year, but the Gospel of John contains a verse of great hope, often read at Christmas carol services, ‘The light shines in the darkness, and the darkness has not overcome it.’”
She continued: “It’s no surprise that such a human story still captures our imagination and continues to inspire all of us who are Christians, the world over.
“Despite being displaced and persecuted throughout his short life, Christ’s unchanging message was not one of revenge or violence but simply that we should love one another,” she said.
Thanks to the combined efforts of millions around the world, many people who have been given a diagnosis of dementia are not excluded by communities and societies.
I never cease to be amazed by the many initiatives in this country and around the world where people living with dementia find inclusive and accessible services. The language is also changing slowly, where words which were once commonly used, which are pejorative and offence, are not as frequent as before.
But there’s still more to be done. There are still ‘frequent offenders’ when it comes to language.
The light shines in the darkness, and the darkness has not overcome it.
At all times, understanding dementia is not about policies, processes or strategies. It is not about targets or the number of people recruited.
Dementia is fundamentally a human story.
It is a story of someone who may need help in noisy environments wishing to follow the thread of a conversation. Or it could be something totally different, like text being made a bit bigger on a blog.
No one size fits all.
There are about 47 million people in the world living with a diagnosis.
I have no doubt one day there will be successful treatments for some, but not all of the dementias. I anticipate the first to benefit from these new drugs will be some of the people living with young onset dementia.
This hope is important.
More important than fear.
We should not be terrified into action about helping people who are fellow citizens after all through manipulative message conveying a sense of shock.
We need to understand the needs of people with dementia, met and unmet, however diverse they are, and those needs of their significant others.
We need to make sure that everyone knows their obligations under the law, including obeying human rights and, in some cases of employers, employment law.
People living with dementia are entitled to the best possible healthcare, wherever they are.
Residential settings should not be viewed as fortresses, divorced from the rest of society, but where people can have a reasonable expectation of living in a homely place.
This is about care for today as well as for tomorrow; but we should not hold any negative feelings for those who can only see the world through a pharmacological and industrial lens.
This fundamental perspective, whatever your religious standpoint, is one which should resonate with us all.
I actually hate ’round robins’, so the idea of me “bigging up” my achievements is much of an anethema to me as it is to you. If I were a clinical regulator organisation, I’d want to be celebrating the very best, as well as identifying the very worst. I am unlikely to give myself a ‘very good’ rating, unless I am nominating myself for a HSJ award. In terms of my own development, I think I progressed substantially from my first book ‘Living well with dementia: the importance of the person and the environment’ to the second book ‘Living better with dementia: good practice and innovation’.
The reasons for this progression were two-fold, I think. Firstly, Chris Roberts most politely offered me feedback about the limitations of the phrase ‘Living well with dementia’. In a nutshell, the major problem is if somebody has a bad day the phrase unfairly blames him or her – in effect the phrase sets people up to fail. A better phrase ‘living better’ is aspirational, and relative. Secondly, I changed in style from one of technocracy, in meeting the demands of the NICE quality standard 30 ‘Supporting people to live well with dementia’ in England to a “more human”, as Steve Hilton might put it, discussion of some important issues in world policy.
My work no longer felt like work, and more like something enjoyable I would do learning from things which had happened in my life. A big thing which happened in my life was going to Australia. I always said to Chris, Jayne and Kate that this would end up ‘being a trip of a lifetime’, which was our justification to ourselves that we wouldn’t ‘slum it up’. Quite the opposite happened. I had a truly magical time. When I got over the daily anxieties of wondering where my passport, wallet, keys and phone were, I loved being in the company of some truly remarkable people. I almost daily read Kate Swaffer’s blog and Beth Britton’s blog. I read the DAI’s blog weekly if I can.
I should really avoid a list, for fear of missing people out, but these must include Kate Swaffer, Peter Watt, Boris the Cat, Veda Meneghetti, Lynda Henderson, Mick Carmody, Sue Carmody, Ian Gladstone, and Jacinta Lynch. But they also include people I came to know also through the Alzheimer’s Disease International conference, held this year in Perth, Western Australia, including Gayle Harris, Truthful Kindness, and Denise Craig. Definitely one of the most surreal ‘episodes’ in #ADI2015 was when the indefatigable Suzy Webster appeared by video link in one of sessions. It’s true – Chris had not seen Suzy on the plane either! My own talk there was on risk and genetic discrimination.
Later in the year, Kate Swaffer and I went down to see Charmaine Hardy and family down in Robertsbridge. I saw Charmaine where in London for the PPA Support Group, brilliantly run by UCL. As you’ll be aware, I think the world of Kate. We became fans of Tony and the Ostrich pub in Robertsbridge, as Charmaine had warned us!
I got to know as very close friends some people at events throughout the year, especially Agnes Houston, Donna Houston, Helga Rohra, Wendy Mitchell, Beth Britton, James Murray-White, Fenella Lemonsky, Jens Rohra, Prof Peter Mittler, Gary Mitchell, Joanne Agnelli, Ken Howard, Toby Williamson, Jennifer Bute, and Colin McDonnell. And also people who fleetingly appeared, but were a big part of my daily Twitter lives, cumulatively made a big impact, including Jeremy Hughes, Larry Gardiner, Alison Cameron, Jos Bell, Karen Dening, Rachel Thompson, Prof Alison Leary, Mehrdad Seyf, Steve Milton, Tommy Dunne, Ripajeet Kaur, Joyce Dunne, ‘Diverse Alz’, Ceri Sian Hodgkinson, Rachel Mortimer, Sarah West, Fran O’Hara, Katy Judd, Pam Luckock, Rebecca Myers, Carmen Medina, Lee Spokes, Hilda Hayo, Hilary Evans, Simone Willig, Hilary Doxford, Silke Kammer, Gráinne McGettrick, Rachel Niblock, Ruth Eley, Louise Langham, Anna Gaughan, Jean Tottie, Marc Wortman, Barbara Stephens, Reinhard Guss, Geoff Huggins, Prof. Olivier Piquet, Lorna Anna Hart, Al Power, Joy Watson, Tony Watson, Philly Hare, Andy Tyson, Zoe Harris, Rachel Menzies, Irene Oldfather, Sarah Reed, Helen Sanderson, Suzi Henson-Amphlett, Richard Humphries, David Oliver, Lucy Frost, Jim Pearson, George Mcnamara, Amy Dalrymple, Gavin Terry, Amy Pepper, Daniella Greenwood, Caroline Millichamp, Debbie Sorkin, Graham Browne, Gary Marsh, Sara Marsh, Andrea Sutcliffe, Nicky Taylor, Prof Dawn Brooker, Prof Murna Downs, Prof Alistair Burns, Prof Martin Prince, Des Kelly, Glenn Rees, Prof Bob Woods, George Rook, Olwen Williams, Caroline Sutcliffe, Joyce Cavaye, Nada Savich, Elo Novilunio, and, of course, Tommy Whitelaw. And Nicole Batsch on a DAI webinar!
Thanks to Jo Moriarty, whose modesty and sheer knowledge are unmatched.
@ermintrude2’s blog is a MUST read for me now, which cuts through all the bullshit in policy ( pardon ).
And I immensely value the thousands of people who know what dementia’s about from Twitter, and who know what life’s about, including Truffle the Cat (whom I have never met ever.) I try to keep up to date with blogs which interest me, like Pippa Kelly’s excellent blog. It was also nice to chat with Lyn Romeo, which I found generally most useful in realising the pivotal work done in the social care profession. I met for the second time ever Peter Ashley at a round table on human rights and dementia, being run by Toby Williamson at the Mental Health Foundation. Peter was a great man, and may he rest in peace. I have been massively moved by Kate Swaffer’s missing of Richard Taylor PhD who also passed away this year. Kate was visibly moved by the video sent by Richard for our private get-together of friends and colleagues on July 11th 2015 in the Arlington Centre, Camden.
Kate gave a talk on the 11th which was brilliant. I gave one too.
Chris’ introduction meant a lot to me personally. I find Chris a rock of support.
Also missed to me is Tim Lloyd-Yeates, whom I spoke to on the phone several times after his diagnosis. It was, however, great to celebrate Tim at the Dementia Congress in Telford.
I turned up to the ‘supporters day’ of Alzheimer Research UK in Euston Road round the corner of where I live, and thought the talks and workshops explaining the work the charity does were brilliant. Hilary clearly is hugely respected there, and so ‘gets’ it. I gave a talk on book 2 at the Alzheimer’s Show in London Olympia, which was another lovely get-together of lovely people too. I was on a panel at the King’s Fund, talking about the future directions of our English dementia strategy, which I loved (and I later attended the ‘enhancing health in care homes’ day there which I learnt a lot from). I attended the Alzheimer’s Society Annual Conference, which I loved, especially the talks by Dennis Gillings and Sir David Dalton.
I ‘made’ about a hundred ‘Dementia Friends’ this year through my talks at BPP Law School, which I’m proud about – a hundred more people who know a bit more about dementia. In fact, I went to an event for Dementia Friends Champions, at their HQ in Devon House, which I enjoyed enormously. DevoManc (with the work of ‘Dementia United’) turned out to be quite a big part of my year indirectly. As a complete aside, I did a few information leaflets on diverse issues for the Manchester academic unit. I loved Alzheimer Europe’s conference held this year in Ljubljana, where I gave a talk on the critical importance of clinical specialist nurses in dementia.
I will in the new year have a paper in Nursing Times on wider issues involved in Nursing Times with Karen Dening, who is Director of Admiral Nursing at Dementia UK. Education matters a lot to me.
I was honoured to accept an invitation to speak on the importance of social media and research at the Open University in Camden, even if it did have an unintended adverse effect of me disliking the research assessment exercise of professional academics. As the year progressed, research and advocacy became more enmeshed with one another for me. I became very interested in human rights and disability activism, and, completely as a result of Prof Peter Mittler, became interested in the United Nations Convention on the Rights of People with Disabilities. I think it’s fair to say that Peter keeps on the ‘right track’ as an academic mentor, for which I am hugely grateful.
In terms of education, I gave four one-hour evening lectures at BPP Law School on aspects of English dementia policy including dementia friendly communities, integrated care, care, cure and research, and choice and control.
This is the one Kate attended (as we were lucky enough to have Kate visiting England in the summer of 2015):
I hope to be organising an MSc online course in dementia for BPP in the new year. BPP is where of course I did some of my postgraduate degrees in law and business. It was, however, with unexpected pleasure I had a great time doing 20 slides with 20 seconds per slide ‘Peucha Kucha in Newnham College on risk and dementia, despite my mixed experience of Cambridge, my original alma mater.
Senses became very significant to me in three ways – firstly, Kate’s emphasis on them in her cuisine, Agnes’ work on raising impairment about sensory issues in dementia, and, finally, the talk I gave on the importance of music as part of Lucy Frost’s “Alive” season in a church in Brighton.
You see, I don’t ‘do’ dementia as a job, as a source of income, apart from very modest royalties from my books. I very rarely claim expenses. I overall attend events all at my own expense. But I enjoy what I do, and that counts for a lot. Chris Roberts did however emphasise that what I do for a living, writing and researching, is equal to a proper job, and advised that I should not belittle its value at all. I don’t have any conflicts of interest, which means I can speak my mind, as you can tell. It was, an honour, to have my work appreciated by peers in that I won best book in the category of ‘health and social care’ for the BMJ Book Awards.
I am now working on my third book, this one to be published by Jessica Kingsley Publishers, entitled ‘Enhancing health and wellbeing in people with dementia: care homes and care at home’, which is in effect on ‘integrated care’, but actually on promoting health and wellbeing persons with dementia in the right place, right time and right way. That of course is the ultimate goal of the NHS and social care, and ‘dementia friendly communities’. I intend to write most of it in one of the libraries of the Royal College of Physicians in London, where I became a member this year. I had intended book 3 to be my last, but I wish to do an important 4th one with Gary Mitchell in 2016 part 2 (a surprise.)
(Apologies to anyone I’ve missed out completely unintentionally.)
Thanks also to the membership of Dementia Alliance International, whose blog and ‘Meetings of the Minds’ sessions I’ve found interesting thus year.
Above all, please do remember that anything can happen to anyone at any time.
In my ‘yuletide blog’, I argue briefly that we’re in a good place as regards the English dementia policy.
What I don’t want to happen is ‘throw the baby out with the bathwater’. Patients have a pivotal rôle to play in service provision improvement and in research. They are not merely ‘data harvesters’.
Likewise, the good intention behind risk factors and prevention shouldn’t be drowned out by an aggressive push to private insurance systems. The National Health Service, paid for general taxation, involves us sharing risk in an equitable way.
This means that we’re not ultimately punished by being borne with higher risk for certain conditions, such as some of the dementias which run in the family. Likewise, identifying dementia at an earlier stage might help to identify more realistic and effective pharmacological treatments, with more research.
In a way, we are currently in the optimal position, so long as certain stakeholders don’t overplay their hand.
The progress in the English dementia policy jars inconveniently with the funding crisis and poor performance of some (not all) parts of the National Health Service.
The main issue is that the whole system is not working. For a start, it is not always possible to get people with dementia into hospital in a timely way as it is impossible to discharge ‘fit for discharge’ patients into the community due to the destruction of social care.
Earlier this year, we were also greeted by this cheerful headline:
And we know that social care has been on its knees for some time.
Richard Humphries, hugely respected at the King’s Fund, gave this unequivocal appraisal in December 2015 concerning the smoke and mirrors of the social care settlement, clouded by talk of the ‘precept':
“Instead of a fundamental root and branch review of how entitlements, as well as funding, are aligned across the NHS and social care, as proposed by the Barker commission, the government has chosen an opaque and messy hotchpotch of measures, which fails to address the short term pressures on social care; it does nothing to place funding on a more sustainable footing in the longer term.”
Dementia policy is currently running in two parallel universes. One universe is the poor state public health and social care find themselves in. The other is the multi-million pound ‘transformation fund’ for drugs for dementia, which may even be too expensive for the NHS to offer in a comprehensive way.
So what’s new in dementia that the Prime Minister can possibly get his teeth into?
Nick Seddon used to be the Deputy Director of ‘Reform’.
He wrote in the Telegraph back in 2010, just as the intense political debate over the much criticised Health and Social Care Bill erupted, the following:
And the solution, unsurprisingly, is framed in terms of a hybrid insurance model.
Lord Warner was the only Labour Peer to vote in favour of the Health and Social Care Act (2012).
And, of course, there was the ideological legacy from the New Labour era, exacerbated a million times worse in the Health and Social Care Act (2012) due to the introduction of default competitive tendering under s.75, of competition as a tool to improve quality. There is very limited evidence to support this, whereas there is quite substantial evidence to show that competition in health markets worsens health equity, and is very costly.
In the Guardian in 2014, a description was given of his new Jerusalem on the NHS based on co-payments and an emphasis on prevention.
So fast forward to the current framework of the NHS underlying the ‘vanguards’ and the ‘new models of care’.
This all cosily fits in the structure of the ‘three gaps’ of the ‘Five Year Forward View’ from Simon Stevens, whose new Labour background is well known. In 1997 he was appointed policy adviser to two Secretaries of State for Health (Frank Dobson and Alan Milburn) and from 2001 to 2004 was health policy adviser to Tony Blair. He was closely associated with the development of the NHS Plan 2000.
Closing the ‘prevention gap’ is still “big business”. There has been an increasingly tendency to pedal the ‘we’re all patients now’ meme with the Big Charity creations of ‘pre-dementia’ and ‘pre-diabetes’, for example. Reasonable clinicians are of course running a mile from this. And – guess what – prevention of dementia means big money.
There is one huge reason why the mechanism of us pooling risk together through general taxation is the best way to look towards the future of dementia care. The alternative, through private insurance, would be an unmitigated catastrophe. But this is an ideological war against the National Health Service, and various devices such as the insidious introduction of the personalised budget through the Care Act (2014) have seen this subtle rationing of resources to the individual level, under the deceptive marketing of the word ‘choice’.
It is no accident that Simon Stevens is a huge fan of genomic medicine. With the possibility of your entire genome being scanned, for risk factors for dementia, you could be aware of your risk for dementia and be inclined then to take out private insurance. But the research into genetics in dementia is advancing quite rightly, as it is hoped that efficacious interventions for a suitable subset of genetic +ve persons might exist in the future.
But Alison Cameron has described very elegantly, recently in “Healthcare Manager” magazine, how the patient movement views itself as more than data points as a bit part for others’ agendas.
This creation of new private markets is the ultimate nirvana of those propose privatisation.
But it is a hugely slippery slope.
You could find out you’re at high risk of dementia and decide you’ve got nothing to lose, as the insurance company will pay out, and blow your lifestyle on all the unhealthy risk factors. Or if you’re at low risk you could decide that paying into the NHS is not for you, and opt out for a relatively cheaper private insurance system.
In 2008, in the US the Genetic Information Nondiscrimination Act (“GINA”) was passed into US law, prohibiting discrimination in the workplace and by health insurance issuers. One wonders whether a genetic phenotype should be considered one day for an amendment in the Equality Act for overseeing such claims under discrimination law.
GINA prohibits issuers of health insurance from discrimination on the basis of the genetic information of enrollees. Specifically, health insurance issuers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.
What has genetic discrimination in the US looked like?
“Jacob, a boy who carries a gene for a disorder called Long QT Syndrome (LQTS), was denied coverage under his father’s health insurance policy because of his pre-existing condition. LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy. Jacob’s father wanted Jacob to be insured, but even after their state enacted a law prohibiting genetic discrimination, Jacob’s insurance company still refused to cover him.”
The legal considerations of the case of framing a global response as ‘dementia friendly communities’ are not insubstantial.
‘Dementia friendly communities’, as such, were “sold” in England as an army of new ‘dementia friends’, emulating the caravan befriending of Japan, producing pledges in a mass social movement about making life better for people with dementia.
But it turns out it is more than that.
The communities are intended to promote independent living, by being inclusive and accessible. They therefore fall under the remit of equality. But the undercurrent of this is that people living with dementia need to be pulled up to an equal standard, irrespective of their type of cognitive deficits which characterise the dementia.
This is a double-edged sword. Under the ‘social model of disability’, people living with dementia living with cognitive deficits can be equipped with cognitive aids to help them overcome impairments resulting from their cognitive disability.
But this incompletely addresses diversity of thought amongst people diagnosed with dementia. Diversity can be embraced in a positive way by employers with the right mindset. For example, people with memory problems can be re-employed in a job where memory is not a big component or where memory aids enable the job to be done.
The label of ‘dementia’ has been argued as useful in that ‘it unlocks services’. The numerous stories of people who’ve had their diagnosis changed from ‘dementia’ to ‘minimal cognitive impairment’, with disastrous personal reaction, are to some extent testament to this.
But IF it is the case that people have caused this effectively by living with a dementia better some serious scrutiny should be put into whether the medical profession in effect punishing people for living better with a chronic condition.
“Graby (2015) suggests that John Swain and Sally French’s (2000) ‘affirmation model of disability’ may be useful in taking this project forward, in which ‘disabled individuals assert a positive identity, not only in being disabled, but also being impaired. In affirming a positive identity of being impaired, disabled people are actively repudiating the dominant value of normality’ (Swain and French 2000, 578). The proposition from the neurodiversity movement is that we should reclaim and redefine ‘impairment’, in the same way as the first disability rights activists challenged the meaning of ‘disability’.”
This takes dementia, as a disability, into a new reframed arena of activism.
The same paper,
“It is our hope that building solidarity across experiences of marginalisation and disablement can move us beyond defining how we each individually deviate from the norm. At a time of increased psychiatrisation coupled with aggressive and devastating public spending cuts and government policies, we need to think collectively about how these processes affect us all.”
There are some people who find themselves, however, disabled by their diagnosis. This in policy is not drawn attention to for the correct fear of further exacerbating the stigma and prejudice surrounding dementia.
But dementia finds itself in the same and different place to other disabilities at the same time.
Dementia and other disabilities share the UN sustainable goals, similar to the UN millennium goals.
But on the hand people living with dementia around the world have experienced distress from austerity, due to the global financial crash of investment markets. In England, this has witnessed the collapse of the Independent Living Fund, while global investment goes into finding a pharmacological cure for dementia.
Being friendly to people around the world, living with dementia, was a well intended aim, for loneliness and social isolation frequently accompany the diagnosis of dementia (for the direct recipients of the diagnosis and carers as well).
However, it is clear that the 47 million people living with dementia have set their sights much higher.
I don’t wish to perceived as a ‘heretic’, despite people’s open and settled views in not labelling people. But please give me permission, oh thou people who say we shouldn’t ask for permission, to stray away from the song sheet for a moment.
One or two individuals like Kate Swaffer and Alison Cameron really ‘get it’, so the discussion below is not to do with them.
‘Co-production’ is a handy concept of designing and implementing services together with the ‘end users’ from the start. I have no wish to embrace a ‘status quo’ argument but it is a fact that there are many professionals and practitioners who are determined to get to the bottom of the beliefs, concerns and expectations of patients, clients, or howeverso called. The narrative about this is often confused by a moral panic whipped up from people involved in commissioning, some who are brokers, and journalists, and others.
I do not perceive myself as a doctor, even though I have received a medical degree, and am a registered medical professional. I do not perceive myself as a ‘patient’ despite living with a number of chronic long term conditions, going about my life and work, and having survived a six week stint unconscious on the intensive care unit of the Royal Free Hospital. So when others talk of ‘conversations between doctors and patients’, it is for me like talking to myself.
I think the work of the Royal College of Physicians in ‘Future Hospitals’ is brilliant – but it is driven by people with clear leadership skills, common sense, and a clear sense of crowdsourcing good ideas wherever they come from.
But at the other extreme there are quite aggressive egos who give co-production a bad name. I am reliably told that ‘co-production’ does not refer to rebranding of tokenistic engagement designed as a ‘tick box exercise’ to get funding.
And this is worth bearing in mind by Alison?
We surely all agree, whatever our starting points, that it’d be disastrous to throw the baby out with the bathwater, as Alison too rightly advises. The issue that real change is required, even if the change is more attractive than the activities of some of the ‘change activists’.
For all the talk of ‘inclusivity’, the norm is that I am never asked for my opinion in these discussions.
I think there is an advantage of listening carefully, rather than merely hearing and loudly boasting about hearing, to patients and users of services, as that is where you can glean often the most direct information about how things are failing. But if I were take a chip out of the motherboard of a LCD TV set it would not necessarily mean that the function of that chip is to make a picture on the TV set. Listening to patients and users tends to be badly done in the NHS, as evidenced by the sheer volume of complaints which never get acted upon. The NHS and social care have a generic problem in not valuing feedback, good or bad, and this fundamental issue needs to be addressed together with ‘co-production’.
I haven’t defined co-production as it means different things to different people, which is a facet of it which many find intrinsically attractive as ‘motherhood and apple pie’. But the definition does matter.
The co-production of public services has been defined, as cited in Wikipedia, in a variety of ways – e.g. “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” (new economics foundation) or “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).
This from Wikipedia also caught my eye:
“The term ‘co-production’ was originally coined in the late 1970s by Elinor Ostrom and colleagues at Indiana University to explain why neighbourhood crime rates went up in Chicago when the city’s police officers retreated from the beat into cars. Similarly to Jane Jacobs’ assessment of the importance of long-time residents to the safety and vitality of New Yorks old neighbourhoods, Ostrom noted that by becoming detached from people and their everyday lives on the streets, Chicago’s police force lost an essential source of insider information, making it harder for them to do their work as effectively.”
My Twitter stream is currently littered with people trying to sell products and services to do with co-production. This brokerage into the NHS and social care, whilst potentially adding value, is also adding costs, typical of private markets. Because of the sheer volume of these products and services, it is difficult to discern those who are offering something useful or those who are selling snake oil (yet again).
I, as it happens, am co-designing a MSc in dementia, so that it speaks to the needs of those people currently living with dementia and carers. I am not doing so as a source of competitive advantage. I am not doing it so some part of NHS England 0r a CCG can buy it.
I’ve already been dead once in 2007 – but successfully resuscitated from my asystolic cardiac arrest. Please don’t let me die, this time, by #deathbyhashtag?
I do applaud people who are using co-producing, wisely, I should emphasise
Rant over
I’ll leave you with the wise words of Alison Cameron, speaking at the King’s Fund at their annual conference 2015, recently if I may?
I’d be very surprised if anyone expects the “new models of care” from NHS England, regularly showcased at conferences, will be the final answer on the organisation of the NHS and social care. Changes in system organisation for dementia are very unsettling, particularly when they happen so regularly.
But the contrast between the “global response” to dementia and the global response to “climate” couldn’t be starker. The former was spearheaded as a response by Big Pharma, undercover of the G7, to ‘find a cure by 2025′, where clearly the main beneficiaries were corporate stakeholders, not the current 47 million people living around the world with dementia.
The film “Still Alice” is testament to this. It pictures one end of dementia services, the medicalisation of dementia, where the patient is privy to a sophisticated expensive brain scan and a specific genetic diagnosis and management plan. Whether or not it is ‘Hollywood’, or indeed the conflation of Alzheimer’s disease and dementia (“Alzheimerisation”), it is far cry to how dementia is actually identified and acted upon in low income in countries. But climate change affects everyone – including China, which for the purposes of the climate discussion, is a “developing country”, not a powerful growing economy. I say the response to dementia could have been one which also benefits everyone – there are after all many people living with dementia around the world.
But China also happens to make iPads, whatever your particular views of globalisation. In the long view of any corporate producing products, the strategy factors in the fact that a product will be regularly updated every years to maintain growth in the industry. I dare say when Apple was envisaging the iPad, it may already have known about the iPad2, but not necessarily about the iPad Pro.
I’d be very surprised if the NHS and social care, and all who benefit from advising it, view the “new models of care” as their final answer. It doesn’t as such matter, as is usual in higher NHS management culture, if they screw up.
“Planned obsolescence” or “built-in obsolescence” in industrial design is a policy of planning or designing a product with an artificially limited useful life, so it will become obsolete, that is, unfashionable or no longer functional after a certain period of time. The rationale behind the strategy is to generate long-term sales volume by reducing the time between repeat purchases.
In the United States, automotive design had appeared to reach a turning point in 1924 when the American national automobile market began reaching saturation. According to the ‘Ansoff curve’, known to every keen student of management, diversification is the only option.
To maintain unit sales, General Motors head Alfred P. Sloan Jr. suggested annual model-year design changes to convince car owners that they needed to buy a new replacement each year, an idea borrowed from the bicycle industry, though the concept is often misattributed to Sloan.
And this principle still continues up until today.
Tech repair and upgrade website “iFixit” has claimed that the Apple Watch won’t be a long term option for those hoping to continually upgrade their device. Upon the release of the Apple Watch, “iFixit” immediately got down to the business of (iBuffs look away now) tearing the brand new product open and evaluating it from the inside. According to “iFixIt”, The s1SiP is custom-designed Apple technology that integrates a number of subsystems like the chip into one package. It is, in fact, encased in resin to increase its durability.
It is not uncommon now for gadgets to have every component soldered onto a massive circuit board so that individual replacements are impossible.
The tragedy is, of course, that we have been here very many times before.
The Conservatives won the election in June 1970, and Sir Keith Josephreplaced Richard Crossman. Joseph produced his own proposals for NHS reorganisation that were embodied in a White Paper published in August 1972.
As in Crossman’s plan, local health authority areas were to be matched with local government boundaries. Hospitals, nursing services, health centres and general practitioners were brought under the control of the new local authorities. These measures were incorporated in the National Health Service Reorganisation Act of July 1973.
According to the “The NHS – a manager’s tale” published by the Nuffield Hospitals Provincial Trust,
“Barbara Castle took over from Keith Joseph as Secretary of State for Social Services with David Owen as her number two. They decided it was too late to stop or radically change the re-organisation due on 1st April but they displayed little enthusiasm for it. Thus the changes were launched with luke-warm political support.”
And even then the influence of McKinsey’s had been felt:
“A large multi-disciplinary steering group had been created and chaired by the then Permanent Secretary, Sir Philip Rogers. The group was supported in its work by the Management Consultants McKinsey and Co Incorporated and the Health Services Organisational Research Unit of Brunel University led by Professor Jaques. Their report, Management Arrangements for the Re-organised NHS, which was published in 1972, came to be known as The Grey Book (the colour of its cover).”
“A Mail on Sunday investigation, based on hundreds of official documents disclosed under the Freedom of Information Act, has revealed the full extent of McKinsey’s myriad links to the controversial reforms.
Many of the Bill’s proposals were drawn up by McKinsey and included in the legislation wholesale.”
I am superficially interested in the ‘new models of care’ as they apply to my speciality, dementia, but I would extremely surprised if they were built to last. Therein lies the exhaustion of the ‘planned obsolescence’ of policy in dementia.
