One of the reasons that the Tories won considerably less well than they were expecting in the last election, and why the decision to call an election at all may well come back to bite, was a seemingly poorly planned announcement during the campaign about adult social care in the UK.

Like most developed countries around the world the UK has an ageing population, a situation likely to accelerate once the Uk leaves the EU and it’s ready made source of young, fit healthy workers dries up.

Around one in three elderly people require expensive long term (i.e. more than a year) adult social care in a home, often because they develop dementia or have some other illness that requires complex day to day support. If you develop cancer, you will be treated in hospital courtesy of the NHS. If you develop Alzheimer’s Disease, attempts will be made to park you back at home or in an adult care home.

In the election, it was announced that the elderly would be expected to pay for their own social care if required upto £100,000 of the value of their assets including their homes. It was stressed that no one would be forced to sell their house before they died (no mention was made of dependents, mind) but the announcement was immediately named the “dementia tax” and may have been the reason why numbers of the over-60s turned out in fewer numbers than usual to vote Tory.

Not only did the furore about the “dementia tax” u-turn (“This is not a u-turn” being the most obvious alternative fact of the election) potentially undermine the Prime Minister and her overall credibility, it also revealed a media almost entirely ignorant of the harsh reality  faced by local authorities, older people and their families as a result of current national social care policy.

In addition, none of the 3 main political parties even came close to recognising this in their manifestos or to providing anything approaching a solution.

The excessive media focus on the possibility that older people may have to sell their own homes in order to receive care at home missed the central point:  social care is in crisis because of a lack of public funds. Leaving aside the £6.5 billion a year spent by the taxpayer on social care for younger people (i.e those under 65) the percentage spend on social care for older people is less than 0.6% of GDP. On top of this, since the spending review in 2010 the local authority social care budgets have been reduced by around 9% due to central government cuts.

As many families and carers up and down the country know, getting access to publicly-funded social care is extremely difficult – at a time when the population is getting older and the needs of the older population are becoming more complex an estimated 400,000 fewer older people received social care services over the last 5 years.

In addition, in order to make money go further, local authorities have limited the amount that they pay to the mainly for-profit care sector, which has resulted, over time in a decline in quality and care companies going bankrupt.

Around 25% of care homes are currently deemed inadequate, whilst care staff often get paid below the minimum wage, and are expected to deliver highly intimate home care services to older people in 15 minute time slots.

Publicly funded social care has now become a residual service. Local authorities have nowhere near the amount of money to deliver a service which enhances the health, wellbeing and independence of older people, and also prevents them from entering unnecessarily into the acute hospital sector. In fact, the last government legislated for national rationing criteria which restricted social care only to those deemed to have ‘substantial’ care needs.

As a result, anyone whose care needs fall outside that definition is left to rely on their families or fend for themselves – irrespective of their ability to pay. Yet, even though local authorities have reduced social care provision to such a residual level, they don’t even have enough funds to provide this – it is estimated that local authorities will need around an additional £2.5bn a year by 2020 just to provide care for those most in need.

It is this rationing of social care on the basis of need rather than ability to pay which many media commentators and analysts overlooked during the election. Despite the furore over “death taxes”, it is highly likely that the extension of the means test to include housing wealth – as is currently the case for residential care – would have a limited impact on the numbers of people who would have to pay for their own care.

It wouldn’t work anyway.

What is clear from all of this is that the Dilnot cap which all 3 main parties now appear to support is not the answer to the social care funding crisis on its own, as it promises no extra funds to raise the coverage of publicly funded care. Indeed, the idea of capping the liability of individuals and families so that they are not subject to so-called “catastrophic” care costs in old age was based on the policy assumption that there would be no substantial increases in public expenditure to expand the provision of social care for older people.

Instead, the solution to additional funding was thought to lie in the private insurance market – insurance companies would be incentivised to offer affordable insurance cover to older people as they would know that their liabilities would be capped to no more than £72k for each older person (or policy holder) who needed a substantial amount of care.

Once an individual (or their insurance company) had paid £72k for their care, the taxpayer would then pick up the rest of the bill. In addition, Dilnot also proposed that the amount of an individual’s wealth which could be taken into account when determining whether they were eligible for state care should be capped at £100k – thus protecting the inheritance of those whose parents had built up significant amounts of housing wealth but had been unfortunate enough to have needed care in old age.

The Dilnot cap – which the last coalition government put on the statute books, but never introduced –  is, in the short term at least, costly, inequitable, and would do little to address the current difficulties faced by older people in accessing publicly funded social care.

It may reduce the government costs in the long term by transferring some of that cost to the private insurance sector. The wealthy would take out insurance when young and they would be taken out of the state budget, at least to the level of the capped expense (presumably an amount that would rise over time).

The Department of Health impact assessment of the policy in 2013 found that it would benefit 100,000 mainly wealthy older people; it would amount to a taxpayer transfer from the state to this group of around £2billion a year; it would cost around £200m to administer; and would require the additional assessment of 500,000 people (on the basis that means and needs tests for all potentially eligible older people would have to be undertaken).

This huge expense – which is more than all major parties committed in their manifestos to giving to the NHS – would not expand publicly funded coverage to include those who had moderate needs as the policy assumes that access to publicly-funded care would be restricted to those with substantial needs. Nor would it lead to an increase in the amount that local authorities could pay social care providers – it would, in effect, lock in the current level of quality into the system. Nor would it prevent the looming collapse of the care home industry and now also some home care providers. In fact, the only benefit which the impact assessment could claim to deliver was “peace of mind” for mainly richer older people.

It was the previous Conservative government who realised that this policy had too many costs and too few benefits and so refused to introduce the legislation introducing the cap. It was also because the cost benefit analysis weighed so firmly against implementation that the policy was excluded from their manifesto – the Prime Minister and the Health Secretary indeed made this case during the election.

But, because of the lack of media understanding and the u-turn forced on the Conservatives during the campaign, the Dilnot Cap with all of its problems is now back on the agenda and being presented as the solution to the crisis in social care.

However, until all 3 major parties recognise that social care requires a significant injection of public funds to move from being a residual public service to one which enhances the lives of older people – and which pays care workers a decent wage – the crisis will continue to worsen.

Power is something we are often uncomfortable naming and talking about explicitly. In our everyday talk, power has a negative moral vibe: power-mad, power-hungry, power trip. But power is no more inherently good or evil than fire or physics. It just is. The only question is whether we will try to understand and harness it. In the culture and mythology of democracy, power is supposed to reside with the people.

Here’s a simple definition of power — it’s the capacity to ensure that others do as you would want them to do. Civic power is that capacity exercised by citizens in public, whether in elections or government or in social and economic arenas. Power in civic life takes many forms: force, wealth, state action, ideas, social norms, numbers. And it flows through many conduits: institutions, organizations, networks, laws and rules, narratives and ideologies. Map these forms and conduits against each other, and you get what we think of as “the power structure.”

Story is the catalytic agent for changing the status quo.

The problem today is that too many people aren’t able to draw, read or follow such a map. Too many people are profoundly illiterate in power (TED Talk: Why ordinary people need to understand power). As a result, it’s become easier for those who do understand how power operates in civic life to wield a disproportionate influence and fill the void created by the ignorance of the majority.

The powerful tell tales about why they deserve their status, so that they can feel better about it. So do the powerless. Together, these two sets of stories form an unseen prison of the imagination that shrinks everyone’s scope of possibility about alternative arrangements and allocations of power.

When you want to challenge the powerful, you must change the story. You can use story to organize people and then allow them to organize themselves into the story. Your narratives have to offer an alternative to the dominant story line of why things are the way they are. You have to stir up a new sense of “us”; provide an overarching explanation for who has what and why; and awaken the hero’s spirit in every citizen. Story is the bonding agent in social cohesion. It is the catalytic agent for changing the status quo.

Organizing people centers on telling three nested narratives: the story of self, the story of us, and the story of now.

Marshall Ganz,  learned his art as a civil rights worker in Mississippi in the 1960s, then went on to organize migrant farmworkers with Cesar Chavez. He developed the organizing tools and strategies used by the first Obama presidential campaign and has mentored countless social-justice organizers around the planet. He teaches now at Harvard, where, 28 years after dropping out of college, he returned to finish his degree and get a doctorate. He is the quintessential teacher-as-learner.

Everywhere he goes, Ganz uses a method for organizing that centers on three nested narratives: the story of self, the story of us, and the story of now. He teaches organizers entering into any setting to start not with policy proposals or high concepts like justice but with biographies — their own, and those of the people they hope to mobilize.

What are the stories you tell about yourself? Why do you tell them that way? How can we find connections across our stories of origin that build trust and common cause? That work then flows into the story of us: the collective narratives of challenge, choice and purpose that emerge from any community — that, in fact, help define it.

This is how in a place like New Orleans after the flood or Detroit after the crash, residents can develop a shared identity of resilience and reinvention. It’s how a political party is able to motivate and mobilise for change.

Once that shared narrative is activated, the organizer can connect it to the fierce urgency of now: a story about why this is the “movement moment,” when individual and collective motivations converge, and when action is needed and possible. Why this and no other time is the time for change. This is how “Yes We Can” became more than a slogan in 2008, as “Morning in America” did in 1980. Or “Make America Great Again” did in 2016.

Stories are weapons in an endless contest for legitimacy.

Of these three stories, the middle one — about us — is crucial. Any effort to exercise citizen power depends on creating new answers to the question: Who is “us”? During the campaign for a $15 minimum wage in Seattle, one of the most potent speeches was from a woman named Evelyn, a sixty-something Filipina immigrant who cleans rooms at a Sea-Tac Airport hotel.

It was a fund-raising event for the campaign, and this was her first public speech. And though she’d never heard of Marshall Ganz before, in her short and blunt remarks she intuitively hit each of his marks. She talked about how a higher wage would enable her to catch up on her bills (self). She talked about why this was a unique opportunity to make gains for working people (now). But she was at her most effective when she talked about what kind of Seattle we wanted to be, and why the city would be stronger if the people who do the thankless work could afford to live there, too. In short, she redefined us. She redrew the circles of identity, not as low-wage workers versus high-wage workers but as people who hold true Seattle values of inclusion versus those who don’t.

This redrawing of the circles is also how “deep canvassing” — intensive face-to-face front-porch conversations based on personal storytelling — can change minds and win adherents on contentious issues like gay and transgender rights. 

Two young political scientists, Joshua Kalla of Berkeley and David Broockman of Stanford, have conducted pioneering field experiments on deep canvassing. One of the strategies that they found most effective was “analogic perspective taking,” in which canvassers would invite citizens to talk about times when they’d been treated unfairly for seeming “different.” From there, the canvasser could pivot to what those citizens had in common with gay or transgender people, and could often awaken enough empathy to reduce bias.

This is more than stepping into someone else’s shoes — it’s stepping into the story of how someone else came to be wearing those shoes. 

If you are trying to convince your neighbors that a nearby church should be allowed to host a temporary homeless encampment, how do you deploy story? Sometimes, it might be by deriding the selfishness of those who resist. More often, it will be by appealing to the better angels of all, so that even resisters can join without losing face.

Either way, you are crafting an imagined us in order to create a real majority. In a town with excellent schools that attracts young families, how do you deal with the divide between the newcomers who are driving up property values and the old-timers who don’t have school-age kids and want lower taxes? Again, you create a story of us, of common interest, that will either transcend that divide or sharpen it in a way that isolates the holdouts.

Such stories are weapons in an endless contest for legitimacy. 

The forthcoming General Election is already over, not won by the Conservatives so much as lost by Labour who have allowed the Tory narrative to prevail.

“We can do better. We can be better. Now.” Is essentially the Labour narrative. It is now and always has been the same story and Labour needs to stick to it rather than [playing the fear blame game that the Tories prefer.

We can do better by our elderly, better healthcare, better social care. Because my nan deserves better and so does yours.

We can do better by our children, better schools and universities. because my children got to university and so should yours, or maybe to an apprenticeship scheme, or straight into a job because that’s what was right for them.

We can do better by our friends and neighbours. We don’t have to be aggressive and nasty to our neighbours, our trading partners in the EU. We can be kind, gentle and generous to the newly arrived amongst us because we are better than the alternative.

We are better than mean and nasty.

Some jobs nobody wants.

Telling a parent that their child is dying has to be up there with the worst jobs in the world, the flip side perhaps to telling them that you can save their child’s life. Telling parents that their very sick child cannot be helped, and worse still, you believe that keeping them alive is pointless and possibly damaging, telling them you’d like to switch off the machines keeping their child alive, must be amongst the most soul-destroying jobs in the world.

Recent newspapers have been full of the difficult case of the British boy Charlie Gard, the latest in a series of court cases in the UK when parents and doctors have disagreed about medical treatment for a child. Charlie Gard is a 9-month-old boy with the rare neurodegenerative disorder severe encephalomyopathic mitochondrial DNA depletion syndrome.

He is dependent on life support and has been in intensive care at Great Ormond Street Hospital for Children in London, UK, since October, 2016. In such disputes, typically, doctors regard life support treatment as “futile” or “potentially inappropriate”.

Parents, by contrast, want treatment to continue. In the current case, High Court Judge Mr Justice Francis has recently rejected the request of Charlie Gard’s parents for him to travel to the USA for an experimental medical treatment, nucleoside therapy. On April 11, 2017, Justice Francis ruled that it would be lawful and in Charlie Gard’s best interests to withdraw artificial ventilation and provide palliative care. Charlie Gard’s parents have appealed this ruling.

When doctors and the courts consider cases like this one, they often focus exclusively on the best interests of the patient. In some cases, however, it is uncertain whether or not treatment would be in the interests of the patient. Indeed, there could be stronger and clearer arguments to limit treatment on the basis of finite and scarce medical resources. Although it feels brutal, keeping this little boy alive inevitably means less money to spend on keeping other children alive.

The different ethical reasons that justify a decision not to provide treatment might come together, or they might come apart. If treatment would be both affordable and in the child’s interests, it should unquestionably be provided. If it is neither affordable, nor in the child’s interests, treatment should not be started or should be stopped.

Where there is uncertainty about the benefits and costs of treatment, parents’ views are crucial. But sometimes the picture is more mixed. Perhaps treatment is in the interests of the patient, but unaffordable within a public health system. In the case of Charlie Gard, the parents have raised money over the internet through crowdsourcing to enable him to be taken to the USA for medical treatment. That would mean that the resource issue is not relevant. Perhaps for him treatment would be affordable, but contrary to Charlie Gard’s best interests?

One way of thinking about what would be in someone’s best interests is to imagine a set of scales. On the right side of the scales are the reasons in favour of a course of action, on the left are the reasons against. If it were a question of weighing a small chance of a positive outcome against an empty scale, the balance would be tipped in favour of treatment, even if the chance (or magnitude) of benefit were tiny.

But there are often substantial negatives in the balance.

Although health professionals do their best to provide pain relief, sedation, care, and comfort to severely ill children and babies, that ability is finite and imperfect. Children on long-term ventilation often seem uncomfortable at least part of the time, they endure needles and invasive procedures, and might be distressed and unable to communicate the source of their distress.

It is possible to argue that the small chance (perhaps one in 10 000) of benefit would outweigh the negatives of treatment in intensive care. However, a shift in perspective casts that argument into doubt. Charlie Gard’s condition is extremely rare, but imagine that there were a sudden epidemic of mitochondrial DNA depletion syndrome affecting thousands of newborn babies. Would it be ethical to artificially ventilate for months thousands of infants to achieve some measure of improvement in one infant? Setting aside any consideration of resources, it seems wrong to subject thousands of infants to invasive and unpleasant life-support treatment to benefit one child. That implies that this chance of recovery is too slim to make treatment plausibly in the current child’s interests.

The reason why these decisions come to the court at all is because parents do not have an absolute right to make medical decisions for their children. Parents are given broad discretion about how to raise their children, for example, how to feed them, how to educate them, and whether or not to immunise them. Parents will not always make the best choices, but for the most part the state will not interfere or intervene. However, where parents’ decisions run a substantial risk of causing serious harm to their child, their decisions must be challenged, if necessary in a court.

When it comes to experimental treatment, there can be different reasonable views among health professionals about how to weigh up the chance of benefit against the burdens of the treatment. In the face of such disagreement, the decision properly belongs to the parents. Assuming the treatment is affordable, and the parents want it, it should be provided. However, when no health professionals think that the experimental treatment is worth pursuing, parents’ request for treatment should not be granted.

In the case of Charlie Gard, just one expert in the USA was prepared to provide experimental treatment. However, the expert admitted that the treatment had never been tried in a child with established encephalopathy and that benefit was “unlikely”; in his ruling, the judge clearly thought that this possibility did not represent a reasonable treatment option.

Decisions about life-sustaining treatment for critically ill children are fraught and difficult for all involved. Parents are, rightly, at the heart of the decisions that are made in intensive care. Their views about treatment are important, and their wishes are usually followed. However, there are limits. Sadly, reluctantly, doctors and judges do sometimes conclude—and are justified in concluding—that slim chances of life are not always better than dying. Providing comfort, avoiding painful and unhelpful medical treatments, supporting the child and family for their remaining time: sometimes that is the best that medicine can do, and the only ethical course.

Pending appeal Charlie Gard continues to be kept alive.