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No need for ‘a seat at the table’. Why I don’t consider myself ‘simply an academic’ in dementia

It’s a pity that this has to be said, but I don’t consider myself ‘simply’ an academic in dementia. Ironically, the people who take to Twitter to rail against ‘silos’ think of me as only capable of being an ‘academic’, a term often surreptitiously used as a subtle form of abuse, especially when accompanied by the meme ‘keeping it real’ in referring to others’ “more glorious” work.

But doing academic work is intensely rewarding.

Prof Claire Surr in fact put her finger on it in a single tweet to me recently when she conveyed the heart and soul of “people like us” put into our work.

As it happens, there is a close sense of community we all feel in academic work, not always summed up in the hashtag #whywedoresearch. I am strictly speaking an academic physician, but it is not commonly know I am a family caregiver of someone very close to me for someone living with dementia. Barbara Hodgkinson (@butterflyscheme) got this at once when I explained this to her on the phone the other day. I don’t as such flaunt my “expert by experience” credentials for the sake of being a speaker at a conference. I have better things to do.

People who know me very closely, like Chris Roberts, Jayne Goodrick and of course Kate Swaffer, know that it’s not at all positioning about me being some great “expert” in something. You see, I died once in 2007 due to meningitis, and then spent six weeks in a coma. It’s why I believe passionately that anything can happen to anyone at any time. People’s lives interests me, and I still remember Prof Tim Cox, chair of clinical medicine at the University of Cambridge, saying to a packed lecture theatre of clinical medical freshers in Addenbrooke’s in 1997 – including me – that it is an enormous privilege being allowed into people’s lives. I have a zillion regrets, but not paying close enough attention to this is one of them.

I wonder whether it’s possible to save dementia care one pledge at a time in the way the Liberal Democrats tried to save politics one post office at a time. But I think people and institutions who are too close to underperforming ‘leaders’, so much so that they are in capable of criticising them, for gratitude of previous gongs perhaps, are doing people living with dementia and carers a huge disservice?

“Speaking truth to power” is important – and it has become a popular way to describe taking a stand. Although the origin of the phrase is commonly ascribed to a 1955 book advocating against the Cold War, its appears to have been coined earlier by civil rights leader Bayard Rustin [1].

Secretary of State for Health, Jeremy Hunt, once said:

‘A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia.’ ¬†[2]

“Fear and heartache” sounds like a typical shock doctrine, but it is true the diagnosis of dementia can bring some heartache, and dementia is the most feared condition in adulthood – and the aspiration of wanting people to live better with dementia is indeed a reasonable one.

But an essential part of authentic leadership these days must be telling the truth wherever possible. In contrast, for example, ¬†NHS Providers chief executive Chris Hopson has recently said national financial constraints means local leaders are being forced to draw up plans they do not believe can be delivered. Many areas are proposing reconfigurations in the “sustainability and transformation plans” that are likely to prove hugely controversial, and the process so far has largely attracted negative headlines and calls for greater transparency [3].

It’s been argued elsewhere that special advisers (“SpAds”) are not the compliant doormats so often characterised of them by the glittering Twitterati. Irrespective of that, it is probably a good idea for ‘leaders in dementia’, defined here by people who review each others’ grants and occupy the same conference slots, don’t view their colleagues as “yes men”. “Yes men” tend to be¬†too busy focusing on following the leader to step up with their own ideas about trends the sector¬†should capitalise on, and¬†tell you what you want to hear not what they‚Äôre really thinking [4].

Furthermore, “groupthink” is so powerful it can make us miss the obvious; when a person feels like there is a group consensus, even if they don‚Äôt agree with it, they are less likely to speak up [4].¬†This is what I suspect happened recently with the English dementia policy. I of course shouldn’t for moment that the leaders in dementia policy are professional “lickspittles”, or¬†‚Äúabject flatterers or parasites.‚ÄĚ

But look at how “caring well” has been so unceremoniously lobbed off Public Health England‚Äôs Dementia Intelligence Network (DIN), designed to work across all organisations involved in the care and support of people who have dementia,¬†and a focus of the Department of Health’s 2020 Implementation Plan [5].

The dementia profile, developed by the DIN and launched on 12 January 2016, collects new and existing data on dementia at both CCG and local authority level;  the data cover six key domains across the entire dementia pathway: prevalence, preventing well, diagnosing well, living well, supporting well, and dying well.

But why no “caring well”? Is that the details of respite care, domiciliary care, care home medicine or clinical nursing specialists do merit a mention?

I believe strongly about this as¬†clear ‚Äėcare pathways‚Äô would define roles and responsibilities within the care system, and establish standards to be monitored and met. Care pathways, a structured and organised approach to the coordination, resourcing and delivery of continuing care, are now a common component of chronic disease care for other conditions including diabetes, hypertension, and cancer care.¬†But why not dementia? [6]

It is rumoured that the phrase “crisis? what crisis?” was never said as such of a previous Labour government. Irrespective, figures from healthcare analysts Laing Buisson currently show one local authority is paying only half the minimum needed to provide safe residential care, and that only 21 of the country‚Äôs 150 councils are paying at or above the lower end of the reasonable cost benchmark [7].

Sarah Pickup has added that the LGA had calculated that even if every council brings in the new social care precept in full, new pressures on the social care sector would still cost £1.3bn more than the precept would provide.

‚ÄúWe see a gap even if everybody did what was necessary in full,‚ÄĚ she said, ‚Äúand that forward gap is only the forward gap, it doesn‚Äôt fund the existing pressures in the system.‚ÄĚ

Pickup also said that, while the Better Care Fund had allowed some local health economies to ‚Äúthink differently‚ÄĚ, it was hard to do in areas where the council and the CCG were very financially challenged [8].

The good news is that there’s always thousands of ¬£ for awareness campaigns for marketing agencies, and I am also a big ‘believer’ in dementia awareness to combat stigma and discrimination. Alzheimer‚Äôs Society launched the emotive film ‚ÄėGone‚Äô, created by Fallon London, and directed by ThirtyTwo, developed to raise awareness of Alzheimer‚Äôs Society.

Nick Bell, Executive Creative Director, Fallon said, ‚ÄėThis film positions Alzheimer‚Äôs Society as the foremost charity concerned with dementia by accurately portraying some of the devastating effects of the condition.‚Äô [9]

And there was more good news from the return on investment from marketing this week, as the 2016 PRWeek UK Awards celebrated the best campaigns, consultancies and teams over the past 12 months.¬†There were 31 categories overall, ranging from Consultancy of the Year to Best Use of a Small Budget. Alzheimer’s Research UK’s “Orange” campaign picked up an award [10]. ¬†I’ve previously discussed my ‘beef’ with the orange elsewhere.

The situation is undoubtedly complicated, however. Cuts to social care should not be viewed in isolation from overstretched general practice and community nursing and the uneven distribution of intermediate care beds. Under-investment in primary and community NHS services threatens to undermine the policy objective of keeping people independent and out of residential care [11]. Signs of provider distress are increasing. Seventy-seven local authorities reported that at least one care home provider has ceased trading in their area in the past six months [12].

Earlier this year, it was reported that more than a quarter of care homes in the UK are in danger of going out of business within three years, figures obtained by BBC Radio Four suggest. About 5,000 homes are at risk of closure because they carry too much debt and do not make enough profit to cover loan repayments [13].

I care about the issue that all people with dementia must receive the best health care, irrespective of location, including home, hospice, care homes or hospital. The recent report “Underfunded, underdoctored, overstretched: The NHS in 2016” from the Royal College of Physicians of London made very depressing reading for me [14].

If you cannot look after your workforce, what hope is there for looking after the NHS ‘patients? NHS staff feel caught between rising demand and squeezed budgets, it was reported.¬†Four-fifths of trainees say their job causes them excessive stress; three quarters¬†go through at least one shift a month without water; and, on¬†average, they work an extra 5 weeks a year on top of their normal hours.¬†95% of trainees warn that poor staff morale harms patient safety [14].

And yet crazily, Professor Dame Sue Bailey is about to lead an independent review to better understand junior doctors’ experience [15].

The review will be led by Professor Dame Sue Bailey, Chair of the Academy of Medical Royal Colleges. Professor Bailey will work alongside representatives from other organisations including the Royal Colleges, Health Education England, NHS England, NHS Employers and junior doctors

I do agree that way healthcare is delivered to people living with dementia needs to change, with a rebalancing toward non-specialist primary care, and planned and coordinated inputs from all levels of the health and social care sectors along with reports elsewhere [6]. This narrative emphasises that care must be holistic, continuous and integrated, with a focus on quality of life for people living with dementia and their carers, and explicit monitoring of processes and outcomes.

But for me it is not good enough to produce yet more ‘charters’ of dementia friendliness. That is why I intend to carry on my campaigning work in dementia, and I am perfectly happy not to be given a seat at the table.

I tried to explain my upset at not being invited to speak at dementia conferences despite my intense passion in the subject, to my friend Chris Roberts. I explained it’s not that I want the ‘glory’ – it’s just I don’t want to be ignored. One happy thing I can say about the English dementia policy is that it is not so easy any more to ignore the views of people living with dementia – and carers – and quite right too!



[1] The Origin of the Phrase “Speaking Truth to Power” John Green, Demand Media¬†

[2] Health Secretary unveils plans to make the UK the most dementia friendly society in the world by 2020 Alzheimer’s Society website

[3] Dunhill, L. Revealed: NHS England checklist for making STP details public. 14 October 2016.

[4]  Why a company full of yes men leads you nowhere.

[5] Prime Minister Challenge on Dementia 2020 Implementation Plan from the Department of Health

[6] LSE blog. Report calls for global action to tackle dementia crisis

[7] Dementia care in crisis over lack of funding from councils. Lucy Johnstone. Daily Express (Sun, Jul 17, 2016)

[8] Integration alone ‚Äėwill not solve challenges of social care‚Äô Public sector executive (11 October 2016)

[9] Alzheimer‚Äôs Society Launches ‚ÄėGone‚Äô m2m blog

[10] PRWeek UK Awards 2016: Winners revealed (October 2016)

[11] Social care for older people: home truths September 2016. Humphries, R, Thorlby, R, Holder, H, Hall, P, Charles, A.

[12] ADASS. Budget survey 2016

[13] Quarter of UK care homes ‘at risk of closure’

[14] Underfunded, underdoctored, overstretched: The NHS in 2016 RCP website

[15] Department of Health (12 February 2016) Independent review of junior doctors’ morale, training and support

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