leadership

Don’t mourn, but organise!

Shibley Rahman 0 Comments

It’s claimed that the British trade union movement, in response to yet another battering of the left-of-centre political parties at the general election in 2015, produced the clarion call, ‘Don’t mourn, but organise!’ The saying, originally associated with the last words of a singer and activist called Joe Hill it is reported, has become synonymous with a severe defeat.

The diagnosis of dementia, imparted to a person and his or her friends and family, can be perceived as a severe defeat. With a relative lack of pure biomedical offerings for symptomatic treatment or cure, currently, or indeed drugs to halt progression of the disease, persons on receiving a diagnosis can be expected to commence an endure a prolonged period of a type of ‘mourning’. The expectation of packing up your day job or dissolution of friends of family can be overwhelming, if an alternative of reablement through the social model of disability is not even ‘on offer’. It is estimated that there are currently about 47 million people in the world living with dementia.

I often give ‘Dementia Friends‘ sessions to the general public. Such information sessions can lead you to bring into sharp focus your own thinking indeed. I was asked about the ‘diagnosis gap’ recently by a salaried GP from West London: this is the gap between potential diagnoses of dementia in the community, and the actual number of diagnoses given. This shortfall has had a number of reasons associated with it across the years, and English policy has tried to reduce this gap.

Chris Roberts was told his diagnosis of mixed dementia, Alzheimer’s disease and vascular dementia, a few years ago. His dementia is what is called a ‘young onset dementia’, as it presented before the age of 65. However, Chris had a history of emphysema, a disease of the lung which can produce shortness of breath and marked decrease in oxygen saturations. Such low oxygen (hypoxia) can indeed cause memory problems. Chris underwent a series of systematic tests before finally arriving at a diagnosis. That is why you always hear Chris about preparing to wait for a proper and correct diagnosis in a ‘worth the wait’ manner.

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Chris is passionate about educating others about dementia. He is in fact the Alzheimer’s Society regional ambassador for Wales, a contact for the Alzheimer’s Research UK, a ‘champion’ for Join Dementia Research, a delegate for Dementia Action Alliance, passionate about supporting Young Dementia UK, a Dementia Friends champion, amongst his main commitments. Such experience has been very recently recognised in his deserved appointment to the committee appointed by NICE (the National Institute for Clinical Excellence).

The basis for the doctor-patient relationship is based on trust and confidence. And yet the statistics surrounding how a diagnosis sometimes not being imparted are staggering. The whole ‘mix’ of reasons is complicated, including a reluctance by some not wanting to be given the diagnosis of dementia, but 37% of people with dementia in the UK do not receive a formal diagnosis, and the length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from two weeks to over six months. For some time now, the Alzheimer’s Society has been doing its ‘Right to Know’ campaign.

In English policy, there have been correct concerns that accompanying the drive for diagnosis should be an equal sustained improvement in post-diagnostic care and support for a person with dementia. This might include a care coordinator, information sharing between care services, multi-disciplinary input as or when required (e.g. from a physiotherapist, speech or language therapist, occupational therapist, clinical psychologist, specialist nurse), enhanced healthcare across a diverse range of care settings (including at home, residential care homes, hospitals and hospices), better advanced care records and planning, better end of life care, and so on. Clinical nursing specialists have in particular a pivotal role in helping with coping strategies for carers, who very often find themselves under strain whilst doing valuable and rewarding work. And an optimal system must include dementia advisors and dementia support workers too.

Chris himself spoke briefly about this topic last year at the Alzheimer’s BRACE conference in Bristol.

Chris produced a brief ‘wish list’, which started with ‘joined up services’.

Here in a recent Care England/ITN debate, Beth Britton, well known campaigner and advocate in dementia care, says, “In my own experience, for my dad, integration simply did not exist.”

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The cuts in social care funding over the last few years have been devastating. Such cuts have had an impact on the delivery of NHS care, for example in delayed discharges from hospital, but it is clear that the social care profession need proper resources and time to care in itself.

The Alzheimer’s Society is currently looking at standards in post diagnostic care and support for dementia, and this will be an extremely welcome contribution to the narrative here in England. A substantial contribution has been made previously by the Care Quality Commission in their ‘Cracks in the pathway’ document, which, while celebrating outstanding care, did concede simultaneously that bad care did exist and could not be accepted. Often care faltered at discontinuities in the care system, notably.

Life experiences matter enormously, as through building up a picture of how people have lived beyond their diagnoses of dementia in the community is critical for us all to understand dementia. Wendy Mitchell never fails to amaze me in the sheer commitment she puts into her campaigning, which includes describing her experience of early onset Alzheimer’s disease, including through her blog ‘Which me am I today?‘. Alzheimer’s disease is the most common type of dementia worldwide, typically presenting with significant problems in learning, memory, navigation and/or attention. Wendy is passionate about promoting dementia research particularly. Wendy will indeed be discussing with Gavin Terry in policy from the Alzheimer’s Society the need for an effective post-diagnostic network next week in ‘NHS Expo’.

In the UK, there are some remarkable individuals who stand out also as leaders, living with dementia. I can think of immediately Hilary Doxford, who happens to be the delegate living with dementia for the World Dementia Council. Also, Ken Howard is an Alzheimer’s Society ambassador, and Dr Jennifer Bute (and who recently featured in BBC Radio 4’s “A doctor’s dementia“. I am also mindful of Agnes Houston MBE, living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names from the UK; there are many more in Europe, and indeed next week’s Alzheimer Europe conference in Ljubljana, Slovenia, will allow time for many social and professional gatherings.

There is no doubt that huge strides have been made in ‘engagement’ and ’empowerment’ of people with dementia. I do not wish to underestimate this. But I do find the word ‘engagement’ as a term a bit limp; for example, I do not as such ‘engage’ as postman when I receive my post from and chat with him daily. You can’t “half believe” in equality or inclusivity, I feel. It has to be more than perceiving people living with dementia as ‘living with an illness’ in the strict medical model, and getting away from the ‘does he take sugar?’ mentality which can inadvertently rear its ugly head. I feel the next obvious advancement is to advance empowerment to a further level, and to have those people who want to, living with dementia, also leading on policy. Chris’ appointment to NICE and Hilary’s appointment to the World Dementia Council, while conceding that a few representatives for the millions with dementia are inadequate, have been the necessary first step in this process, I feel.

There are ways of not mourning but organising, through for example the European Persons with Dementia (chaired by Helga Rohra), or internationally through the Dementia Alliance International (chaired by Kate Swaffer). Therefore, if one truly believes in genuine equality, we should be jumping at the chance of equipping those people with dementia who want to with the leadership skills to promote authentic advocacy. This will meet with some resistance from others, I am sure, but this is essential if we are to go beyond ‘friendliness’ and cut into the icebergs that are stigma and discrimination.

 

 

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The World Dementia Council will be much stronger from democratic representation from leaders living with dementia

Shibley Rahman 3 Comments

There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself.  You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.

“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.

Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.

I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.

Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.

I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.

I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).

I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.

Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.

My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.

Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.

I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.

I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.

I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.

Lots of small gains will see our shared vision for living better with dementia shine through

Shibley Rahman 0 Comments

When I asked Charmaine Hardy (@charbhardy) if she would mind if I could dedicate my next book, ‘Living better with dementia’ to her, I was actually petrified.

Obviously, Charmaine had every right to say ‘no’. You see, I met Charmaine through Beth on Twitter, and I saw the three letters ‘PPA’ in Charmaine’s Twitter profile. Charmaine’s Twitter timeline is simply buzzing with activity. It’s hard not to fall in love with Charmaine’s focused devotion everywhere, nor with how much she adores her family. This passion, despite daily Charmaine working extremely hard, itself generates energy. People are attracted to Charmaine, as she never complains however tough times get. She thinks of ways to go forwards, not backwards, even when she had trouble with her roses recently. She basically creates a lot of good energy for all of us. As Charmaine’s Twitter profile clearly states, “I’m a carer to a husband with PPA dementia.”

Things are not right with the external world though. We have millions of family unpaid caregivers rushing around all the time, trying to do their best. Seeing these relationships in action, as indeed Rachel Niblock and Louise Langham must do at the Dementia Carers’ Call to Action (@DAACarers), must be a fascinating experience. There’s a real sense of shared purpose, often sadly against the “system”.

Contrary to popular opinion, perhaps, I have a strong respect for the hierarchy I find myself in. I have asked Prof Alistair Burns (@ABurns1907), a very senior academic in old age psychiatry, to write one of my Forewords. He also happens to be England’s lead for dementia, but I hope to produce my book as a work of balanced scholarship, which does not tread on any policy toes.

But underlying my book is a highly energised social network (@legalaware), based on my 14000 followers on Twitter. My timeline is curation of knowledge in action, in real time as my #tweep community actively share knowledge on a second-by-second basis. There’s a real change of us breaking down the barriers, and changing things for the better. Sure, some things of course don’t go to plan, but with innovation you’re allowed to crack a few eggs to make an omelette. I have enormous pleasure in that in this network people on the whole feel connected and with this power might produce a big change for the better.

My new book is indeed called ‘Living better with dementia: champions challenging the boundaries‘ – and I feel Kate Swaffer (@KateSwaffer) and Chris Roberts (@mason4233) are doing just that. They continually explain, reasonably and pleasantly, how the system could be much improved from their perspectives of living well with dementia, such that we could end up with a ‘level playing field’. And of course the fact we know what each is up to, for example pub quizzes or plane flights, means that we end up being incredibly proud even if we have the smallest of wins.

My proposed contents of this book are as follows: here.

I am not going to write a single-silo book on living better with dementia, however much the medics would like that.

For many of us in the network, dementia is not a ‘day job’. This shared vision is not about creating havoc. It’s simply that we wish the days of the giving the diagnosis of dementia as ‘It’s bad news. it’s dementia. See you in six months’, as outnumbered. That’s as far as the destruction goes. We want to work with people, many of whom I used to know quite well a decade ago, who felt it was ‘job done’ when you diagnosed successfully one of the dementias from seeing the army of test results. I would like the medics and other professionals not to kill themselves over our urge for change, and work with us who believe in what we’re doing too.

Whenever I chat with Kate and Chris, often with a GPS tracker myself in the form of Facebook chat, I am struck by their strong sense of equity, fairness and justice. And I get this from Charmaine too. The issue for us is not wholly and solely focused on how a particular drug might revolutionise someone’s life with dementia. The call for action is to acknowledge friends and families need full help too, and that people living with dementia wish to get the best out of what they can do (rather than what they cannot do) being content with themselves and their environment. We’re looking at different things, but I feel it’s the right time to explain clearly the compelling message we believe in now.

These values of course take us to an emotional place, but one which leads us to want to do something about it. For me, it’s a big project writing a massive book on the various contemporary policy strands, but one where I’ve had much encouragement from various close friends. For me, the National Health Service kept me alive in a six week coma, taught me how to walk and talk again, when I contracted meningitis in 2007. As I am physically disabled, and as my own Ph.D. was discovering an innovative way of diagnosing a type of frontotemporal dementia at Cambridge in the late 1990s, I have a strong sense of wishing to support people living with dementia; especially since, I suspect, many of my friends living well with dementia will have experienced stigma and discrimination at some time in their lives.

I understand why medics of all ranks will find it easier to deal with what they are used to – the prescription pad – in the context of dementia. But I do also know that many professionals, despite some politicians and some of the public press, are excellent at communicating with people, so will want to improve the quality of lives of people who’ve received a diagnosis. We need to listen and understand their needs, and build a new system – including the service and research – around them. I personally ‘wouldn’t start from here’, but this sadly can be said for much for my life. Every tweet on dementia is a small but important gain for me in the meantime. Each and every one of us have to think, ultimately, what we’ve tried to do successfully with our lives.

Suggested reading

Read anything you can by @HelenBevan, the Chief Transformation Officer for the NHS.

Her work will put this blogpost in the context of NHS ‘change’.

If you say ‘no decision about me without me’ too much, it’ll become meaningless

Shibley Rahman 5 Comments

It seems to have become a ‘bomb proof mantra’.

No self-respecting policy wonk on the healthcare circuit can be seen without the words ‘no decision about me without me’ stitched into the lapel of their jackets.

But if you repeat something enough times, people will believe you.

Conversely, it might become meaningless.

It of course is motherhood and apple pie, and not an ethos which you could fundamentally disagree with. Normally, that is.

This current parliament saw parliament introduce section 75 of the Health and Social Care Act (2012), and its associated regulations. It was a significant departure from previous statutory instruments enacted under previous governments.

This current Government wish to demonstrate in flashing lights their commitment to ‘localism’. This plainly became very hollow when Jeremy Hunt saw fit to contest the Lewisham case in both the High Court and Court of Appeal, against the loud wishes of stakeholders, at taxpayers’ expense.

The NHS in England is still reeling from this catastrophic policy decision, touted by a number of high profile think tanks and their corporate masters. It gave rocket boosters to competitive tendering to the private sector.

In any market, there are winners and losers. For every winner, there’s a loser. There’s a finite amount of cake we are being told. So in this climate it is no wonder that providers, including social enterprises, wish to seek an unique selling point in marketing.

The slogan “no decision about me without me” happily trips off the tongue for the purpose. There is very hard for any reasonable person to argue against the design of research programmes and the service without the views of the end-users.

But this all depends on your precise definition of ‘involvement’. For example, I have been successfully living with two chronic long term conditions, physical disability and mental recovery from a severe alcohol dependence. But in this climate of ‘co-production’ and ‘distributed leadership’, and even shared decision-making, nobody has had the decency to ask me for my opinions about these services.

One can adopt the stance that it is up to me to make my views know, rather than be merely a passive recipient of a service. And of course I do make my views known in non-symbolic ways.

The fact is that patients are all too often liable to made into cannon fodder for other people’s purposes. This might to be to sell a product or service in dementia.

Or they could be used to promote how wonderful ‘community services’ are in a London borough, for the personal gain of those promoting them, but at the expense of shifting resources away from severely under-resourced secondary care hospital units.

And not all stakeholders can be correct, and have an equal say in strategy. Reams and reams and reams have been written on this in the field of ‘corporate social responsibility’. For example, some social enterprises have found real difficulty in rationalising the drive to maximising shareholder dividend with community value and outcomes, however so defined.

Freeman had an attempt at formulating his ‘stakeholder theory’, but there have been remarkably few successfully theories since, arguably.

And how corporates show responsibility (or rather “don’t behave badly”) has become a hotbed for corporate strategists. For example, Prof Michael Porter, a strategy Chair at the Harvard Business School, published a highly influential review with Mark Kramer on society and strategy.

Large charities – operating strategically in a corporate-like manner – can, it can be argued under this construct, be obtaining their “moral fitness to practise” by involving people they raise large funds for in their mission, whether that is for ‘friendly communities’, ‘care’ or ‘research’.

So the pen is indeed mightier than the sword. Like pornography though, I can recognise real involvement and empowerment when I see it.

Some people aspiring, rather than battling or fighting, to live with dementia do wish to have ownership and control their dreams.

But in this crazy world of ‘dyadic relationships’, and other similar convoluted terms, some persons with dementia for example have their own beliefs, concerns and their expectations. They are not joined at the hip to the carers.

“No decision without me about me” is one of the latest political catchphrases in relation to the health service, in our jurisdiction, and describes a vision of healthcare where the patient is – if not an equal partner – then certainly an active participant in treatment decisions.

In 2002 the independent Wanless report recommended that, in order to cope with rising demand and costs, the NHS should move to ensure that all patients were “fully engaged” in managing their health status and healthcare.

It has a laudable aim, but, like many of these slogans, is at real danger of trivialising what is a profoundly serious policy issue.