social work – Richard Brown

The business of taking care

It’s five years ago today my father died. A month earlier, he had been discharged from hospital (after much squabbling about wheelchairs and social services) to a nursing home, where he seemed just to lean into a fate sealed three years earlier when he fell and suffered a catastrophic brain injury. My mother died more recently. A tough leaving she had of it too, with a degenerative disease that slowly robbed her of autonomy and dignity.

But I’ve noticed something changing in myself since my parents’ deaths. Over the past eight years I became quite the sharp-elbowed advocate, understanding social care and health interfaces, always up for debating what could and could not be supplied on prescription, schooled in the technicalities of continuing healthcare funding assessments, and ready at the end to discuss with doctors ‘patient’s best interests’ and palliative care. I wrote long and slighly laboured blog posts about the iniquities of the funding system and the impossibility of its reform.

Now, not so much. J’en ai marre de ça, as the French would say. I’ve unsubscribed from newsletters about healthcare funding, about my mother’s condition, about social care. Even as I mourn my mother and remember my father, I don’t want to think about these things any more, except to hope that my death is swifter and easier.

But that’s not really good enough, or shouldn’t be. When people get frustrated with local services or the local education system, they become councillors or school governors, or at least post on Mumsnet. But when we see how the health and social care system fails old people – and to be clear, my parents did pretty well compared to many – we want to brush it all under the carpet, born I guess of the odd sense of shame we have about letting others care for elderly relatives, and an apotropaic worry that talking will bring misfortune on ourselves.

Most people most of the time, they don’t need to think about elderly care, and about the disgraceful way it lets down so many old people, and so many highly-motivated and kind care workers. And those who cannot avoid knowing (most of us at some stage in our lives) keep silent or strive to forget. This needs to change if we are to have sensible discussions about the provision of decent care for older people, about who is responsible, about who pays, and about where the limits lie, when more and more things can be survived but not truly lived through.

Careless vistas

So many prime ministers have pledged action on social care before recoiling, that I really wanted to celebrate the PM grasping the late summer nettle of reform. But he seems to have brushed casually past it while racing after shimmering mirage of making the NHS “the envy of the world”. Providing a ‘cap and floor’ for personal contributions to care is a good thing. It will reduce anxiety and help protect inheritances for many moderately well-off families, though using workers’ national insurance contributions to do so seems pretty well the least appropriate way of achieving that.

Or almost. State-provided adult social care (which London Councils estimate is 65 per cent of home care and 54 per cent of residential care) is currently funded by London’s boroughs, drawing on government grants, and the dysfunctional ugly twins of local government finance – council tax and national non-domestic rates.

Paying for social care accounted for more than 50 per cent of London borough service spending in 2018/19 according to Centre for London analysis (excluding public health, education and police services). London’s older population and younger population with care needs are both forecast to grow over the next decades, so the costs will rise. When he was chief executive of Barnet Council, Andrew Travers drew a ‘Graph of Doom’ showing social care (including children’s services) gobbling up the whole borough budget by 2030. The £3 billion or so (out of a total of £36 billion) left for reform of the system over the next three years would only just close the funding gap in London. It’s pretty thin gruel.

Even putting the matter of funding levels and taxes to one side for a moment, it makes no sense for the service to be delivered this way. People value social care, and see it as a critical service, but also look to councils for housing, planning, waste collection, street cleanings, park, libraries and schools.

The current model also creates an unhealthy tension between the NHS and social services, as older people are shunted gracelessly between home care, hospitals and residential care. I have heard anecdotes about councils employing full time lawyers to argue against hospital discharges into their care, and (full disclosure) I am personally in the middle of an unseemly haggle with the NHS and social services about who should be providing my mother’s care.

The row over the miserly allocation of funding to social care improvement, compared to the sums lavished on the NHS, illustrates the point. It is artificial to distinguish between the care provided to an old person at home and the care she receives on a hospital ward, not least because if you get the former right, you are less likely to have to pay for the latter.

I am generally all for devolution, but I think this may be the exception. The PM announced that the “NHS and social care systems need to be brought closer together” and talks of “integrated care systems”, but we have been hearing soft phrases like that for years. I think we need to be bolder, and nationalise funding for adult social care.

This does not necessarily mean nationalising care homes and care agencies, though in some cases that might be desirable or even necessary. It should mean tighter regulation to ensure decent pay and more consistently compassionate care. In many cases, services would be provided pretty much as they are now (the NHS is far more used to operating through third-party providers than it was in the past), but decisions would be taken in a genuinely integrated way, where budgets allocations were not the issue.

This is not intended as a criticism of borough social services departments – London has some pioneering boroughs like Hammersmith and Fulham, who are I think the only local authority who levy no charges for home care, regardless of care recipients’ savings.

And the NHS is far from perfect; it has a lot to learn from social services about the management of long-term conditions, which often seems to take second place to the more life-affirming business of ‘curing’ people in hospitals. There would still be a role for local authorities, in managing interfaces with housing and other services, in promoting public health and preventative services, and in acting as champions and advocates for their residents – perhaps through continuing to play a part in assessments of need.

There are elements of today’s announcement that should be celebrated, but it is still tinkering with the system rather than seeking to transform and upgrade arrangements that date back 70 years. There has been a lot of talk about better joint working between the NHS and local government, but progress has been limited in London. I’m afraid that the consequences of missing the opportunity for more fundamental structural change – or at least beginning a debate about it – will become increasingly apparent in the next few years.

Donning the Cap?

Social care for older people is one of those issues that every political party professes to care about, but none is willing to tackle. At election times, it is ritually acknowledged as important, then sidelined by voters and politicians alike.

The one exception to this was the 2017 election, when Theresa May\’s Conservative Party had a rare moment of political courage and came up with a proposal that was at least rational and and thought through. They were duly punished, for reasons which we\’ll come back to, and which probably explain the timidity across the spectrum. This time round main parties\’ manifestos are artfully evasive – all but conspiring to avoid the subject – but point the way to a possible consensus in the next Parliament.

Before considering the parties\’ proposals, such as they are, it is worth looking at how social care operates at the moment. Unlike the NHS, the glamorous sibling that carries us through critical moments of our life and is never far from TV screens whether in dramas, documentaries or new bulletins, social care for the elderly lurks in the shadows. It\’s one of those things best not known about it, until you have to learn a lot in a hurry (I have, so this rant is all a bit parti pris).

Care today, gone tomorrow
If an older person needs help living in their own home, with everything from moving around, to washing and dressing, to using the loo, the local council\’s social services department will appoint carers to visit up to four times a day to help out with those tasks (\’domiciliary care\’). If needs are more severe, you may have to go into a care home, or a nursing home with more specialist medical staff.

Costs mount up quickly: four visits a day can cost £400-500 per week (£26,000 a year), while residential care can cost twice as much. And, if you have capital assets above £23,250, you will have to meet those costs (or make your own arrangements). If you have less than £14,250, the council will pay all your costs. If you are receiving care at home, and own that home, you won\’t have to include that in your assets; but if you are in a care home, it will be included, unless you have a partner or dependents living there.

There is one big exception to all this – \’continuing health care\’ (CHC). A 1999 court decision held that all the care needs of a particular severely disabled adult were in essence \’health care\’ needs, and should therefore be funded in full by the NHS, at home as much as they would be in hospital. CHC is a big cost for the NHS, more than £3 billion per year, and getting it involves an undignified argument about precise levels of enfeeblement with clinical commissioning groups who will fight hard to avoid assessing patients as eligible.

The inequitable split between means-tested social care and universalised health care was one of the things that sunk Mrs May\’s modest proposal in 2017. She proposed that people would be required to pay for social care until their assets reached £100,000 – a much higher threshold than currently, but this time including the value of property (which would not have to be sold until after death). But why should someone with dementia have to impoverish themselves – or rather eat into their children\’s expected inheritance – while someone with cancer would receive their treatment free, the critics asked? Dementia Tax, they shouted! After that, the deluge, a hung Parliament, and all the fun that has ensued.

Caps and consensus
Which brings us to the parties\’ manifestos this time round. The Conservatives\’ is triumphantly vague, allocating around £1 billion a year extra to budgets for adult social care (currently just over £21 billion), and promising to build a consensus for reform.

Beyond that, there is a promise that \”nobody needing care should be forced to sell their home to pay for it\”. As discussed above, there are only a few circumstances today where people are forced to sell their homes, and giving the same exemption to a £50 million mansion as to a £50,000 flat seems a little arbitrary.

The Daily Mail, which has campaigned vigorously against people being forced to sell their homes, might be more enthusiastic about the Labour Party\’s plans for universally free personal care for over-65s (except, you know, socialism, Corbyn etc). But Labour\’s plans are themselves unclear: the Manifesto promises a \’National Care Service\’ providing free personal care to the over-65s – but then talks, confusingly, about eligibility criteria and lifetime cap of £100,000 on individuals\’ payments towards their care.

The idea of a cap on costs goes back to the 2011 Dilnot Commission, which recommended a cap on lifetime costs of around £35,000. It certainly makes more financial sense than universal free provision, which has been priced at £6 billion a year. The fact that Labour\’s spending plans show the cost of social care reform as £2 billion suggests that capping costs, rather than free provision, is the real plan.

It is one idea that might even attract cross-party support. The coalition government\’s 2014 Care Act provided for a cap to be set, and a cap of £72,000 was proposed for 2020, but the idea has been quietly dropped, as the long-awaited Green Paper on Social Care continues to be, erm, awaited. The idea of a cap also appears in the Liberal Democrat manifesto, bashfully buried at the end of a waffly paragraph about \’sustainable\’ and \’joined-up\’ funding.

A cap is essentially a form of social insurance: we don\’t know whether we will need care when we get older, so the state insures us, but will levy an \’excess\’ of up to £100,000 from those who can afford it. It is perhaps more surprising to find such a measure in a Labour manifesto. On its own a cap is deeply regressive, hitting the poorest hardest, while allowing the rich to retain the bulk of their wealth. Admittedly, the Dilnot Review recommended that the cap be combined with a means-tested threshold, so people would not have to pay anything if they had less than £100,000 in assets (as reflected in Mrs May\’s fateful 2017 proposal).

Such a cap and threshold approach would protect the poorest, but still privilege the rich over the moderately wealthy. While 30 per cent of people leave less than £100,000, so would be not have to pay anything towards care costs, 55 per cent of people leave between £100,000 and £500,000, so would take a significant hit. It might not be as much as they would pay without a cap, but voters may not see it like that: nobody plans to lose in the lottery of long-term care.

The parties\’ proposals leave a lot of issues unaddressed. The quality of care provided by carers rushing from appointment to appointment can be highly variable, and the working conditions and pay are so poor that the profession tends to attract the dedicated or the desperate. In much of the UK, care agencies are dependent on workers from overseas, so Brexit and a change in the immigration regime may be an additional threat. But half-hidden within the parties\’ manifestos is the germ of a consensus, a potential route through the treacherous terrain of funding services that few of us plan to use, but most of us will.

The wrong sort of community

A few years ago, I visited one of the poorer districts of Sao Paulo. Not a chaotic favela, but a cluster of housing projects in an isolated location on the edge of town, as grim as a concrete structure can be under the blazing Brazilian sun.

The Paulistanos – architects, urbanists, social scientists etc – who were showing us round explained how areas like this suffered from very weak social capital, with few organisations in place apart from well-organised gangs like PCC. What about the huge buildings by the side of the highway? one of our party asked. Ah, they were just evangelical churches, we were told. There was a brief pause, and then the conversation moved on, avoiding any further mention of what are clearly some of the most powerful players in Brazil\’s civil society.

I remembered this a couple of days ago when I read, in Zoe Williams\’ comment piece in the Guardian, that London Citizens had been one of the few success stories in the Government\’s dismal Work Programme, getting 1,500 people into work. I have had dealings with London Citizens over the years; they are an effective community organising and campaigning organisation, which has been assiduous in securing solid commitments from local authoirities and other public bodies, by offering public adulation or denunciation.

But you\’d have to look reasonably closely at London Citizens\’ website to see that this is a group with deep roots in the churches and mosques of London. My first meetings with the group, almost ten years ago now, tended to involve an Muslim imam or two as well as a multi-denominational smorgasbord of Christian ministers (though one of my colleagues remarked sotto voce as their list of demands were read out, \”They\’re not priests, they\’re fucking Trotskyites\”).

These religious roots are politely ignored on all sides, not only because the unified front would fracture if theological matters were brought to the surface. There is a faint feeling of embarassement among secular middle class liberals (like those sitting the other side of the table in City Hall) when dealing with religion. The awkwardness increases when the religious belief is manifested fervently, as a central plank of identity, rather than as a private hobby that goes unmentioned in polite company.

But travel on any tube in east London, and you quite quickly see people (usually poorer, ethnic minority people) poring over their copies of the Qu\’ran, Bible or other religious text. And the big razzle dazzle evangelical churches (some, like UCKG, imported from Brazil) can pack out auditoria every weekend. So I\’m not surprised that London Citiens succeeded where private contractors have failed: they are reported to have preached the scheme in church and mosque and to have intervened directly (dressing unemployed people up, and driving them to job interviews).

However unsavoury some of their teachings to liberal ears, these \’faith communities\’ still seem to be able to touch the parts of society that the best-intentioned outreach programmes fail to get anywhere near. It seems perverse to ignore them, then to talk of \’hard to reach communities\’.