Fix dementia care by petitions? Stop the world, I want to get off!

Power, as British philosopher Bertrand Russell defined it, is simply “the ability to produce intended effects.”

It is perhaps not surprising that in the era of Donald Trump and Brexit, with talk of walls being erected between US and Mexico, and talk of £350,000 going to the NHS per week, Oxford Dictionaries has declared “post-truth” to be its international word of the year.

Defined by the dictionary as an adjective “relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief”, editors said that use of the term “post-truth” had increased by around 2,000% in 2016 compared to last year.

Similarly, it seems to have affected a perception of social care. Vic Rayner, Executive Director of the National Care Forum, tackled the issue in a recent blogpost, and Simon Bottery, Director of Policy and External Affairs at Independent Age, has even considered whether social care is the lemur of the health and social care ecosystem.

You cannot fault Jeremy Hughes for launching the notion that you could go a long way to solving the crisis in domiciliary care training by a single petition. The well known chief executive of the Alzheimer’s Society is certainly big box office when it comes to campaigning for dementia. There are few people who’d be able to front a campaign in home care.

The Alzheimer’s Society proposes, “Homecare is failing people with dementia. Alzheimer’s Society is calling for the public to sign their petition and call on the Government to fix a broken homecare system.”

Jeremy Hughes correctly in my view says, “There is simply not enough money invested in the social care system. Homecare workers are crying out for more dementia training – without it their hands are tied behind their backs. From the scandals we have exposed, it is clear they are not fairly or adequately equipped with the skills they need to support vulnerable people with complex needs. ”

But it would be completely wrong to levy all the blame at the door of Big Charity for why dementia had not been ‘fixed’ by now, particularly having spent millions on the ‘Dementia Friends’ campaign?

In this post truth era, Jeremy Hunt MP, the longest serving Secretary of State for Health ever, who has presided in the deepest dissatisfaction in the NHS from its junior staff ever, has been quite insistent that more money spent investing on health and social care doesn’t necessarily mean better quality. Yeahhhhhh rightttt.

The picture which emerges from the recent King’s Fund report on social care for older people makes dire reading.

“Low levels of pay, training and skills of care staff – 37 per cent have no recognised qualification – and increasing difficulties in recruitment raise worries about the quality of care, at a time when the acuity of people’s needs in all care settings is rising. The former Chancellor’s announcement in the 2015 Spending Review and Autumn Statement of a new National Living Wage has been welcomed but will add at least £2 billion to workforce costs by 2020. This has triggered fresh concerns about the financial viability of many care providers after several years in which fees from local authorities have been frozen. Already some of the largest providers of home care have withdrawn from the market (LaingBuisson 2016).”

But hold on a mo. Jeremy Hughes might be onto something here with the use of petitions.

The internet has changed the world for many of us, and charities are no exception. The past decade has seen the third sector is beginning to utilise the internet’s potential, but there might be some way to go still. The great advantages of e-campaigning are speed and cost.

The use of the petition illustrates well the difference in approaches between ‘old power’ and ‘new power’. “New power models” are enabled by peer coordination and close network ties and rely on full engagement and participation. “Old power” is enabled by what people or organisations own, know, or control that nobody else does—once old power models lose that, they lose their advantage. In a nutshell, “new power” is open, participatory, and peerdriven.

In a special issue of “MIS Quarterly” in June 2016 on ICT and societal challenges, Miranda, Young and Yetgin considered whether social media was truly emancipatory.

They moot,

“Our research objective is to understand how and to what extent digital mass media are emancipatory (i.e., permitting widespread participation in public discourse and surfacing of diverse perspectives) versus hegemonic (i.e., contributing to ideological control by a few).”

In a wide-ranging article, they discuss:

“A frame “is a device for organizing material that emphasizes some aspects of an issue…and downplays or ignores others” (Fredin 2001, p. 269). Frames “help people understand complex issues” (Soule 2009, p. 42), but also bias their perspectives to align with those of framers, who accentuate certain information and de-emphasize other (Benford and Snow 2000).”

An issue with framing the ills of domiciliary care with a petition focused on training is that it diverts attention from years of deliberate, chronic underfunding of the current Government. We should all like the Alzheimer’s Society to be confident enough to speak truth to power, if they are sincerely campaigning on behalf of people living with dementia and carers.

But there is no doubt that charities in dementia, big or small, need to be effective campaigners.

Here, Cancer Research UK, the world’s leading charity dedicated to cancer research, provides a salutary tale. They support research into all aspects of cancer through the work of more than 4500 scientists, doctors and nurses in over 40 towns and cities in the UK. It is said that In 4 years, the charity grew its campaigner base from virtually zero to well over a third of a million people.

Spiers (2009):

“The bulk of grassroots campaigners respond to a small number of infrequent, simple asks, such as e-mailing an MP or signing a pledge. A smaller number of ‘super-activists’ want to take action more frequently and are willing to commit to more complex or demanding actions, for example collecting petition signatures in their community or organising a letter-writing day. A very small proportion of campaigners, known as ‘Ambassadors’, are keen to fully engage in campaigns and are trained in face-to-face lobbying before meeting with politicians at a lobby day. Ambassadors follow-up their meeting with local and regional press coverage, constituency visits and letter-writing.”

Their model is this.


(from Spiers 2009).

A councillor in Paris recently demonstrated the potential power of public petitions. His campaign against supermarket food waste amassed more than 200,000 signatures by the time national legislation was approved in France. The move has now encouraged other countries on the continent to follow suit, arguably?

Many charities have compelling stories within their social networks. These often involve inspiring and determined people whose passion can appear at odds with a well established charity with strong brand identity. But it can be a challenge to communicate
this history to the wider public without coming across as old-fashioned.

In contrast, it’s been estimated that there are more than 85 million users of the petition website in 196 countries, with a perhaps unmeasurable number of petitions on the go at any one time. Similarly, the campaigning group 38 Degrees has 2.5 million members in the UK.

So can a single petition #FixDementiaCare?

Stranger things have happened… stop the world, maybe it’s time to get off.


Benford, R. D., and Snow, D. A. 2000. “Framing Processes and Social Movements: An Overview and Assessment,” Annual Review of Sociology (26), pp. 611-639.

Fredin, E. S. 2001. “Frame Breaking and Creativity: A Frame Database for Hypermedia News,” in Framing Public Life: Perspectives on Media and Our Understanding of the Social World, S. D. Reese, O. H. Gandy, and A. E. Grant (eds.), New York: Routledge, pp. 269-293.

Soule, S.A. 2009. Contention and Corporate Social Responsibility, New York: Cambridge University Press.

Spiers, J. Cancer Research UK’s Cancer Campaigns function: moving into the campaigning arena. J. Public Affairs 9: 183–191 (2009)

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