£119 Billion for a pat on the back?

It’s important I think to clarify at the outset of this post my recognition that unpaid support for disabled people will always play a significant role.  But I also believe that we should always be striving to ensure that the role it plays should be one that does not place at risk the right to family life, the rights of children, the rights of disabled people to independent living, people’s health or economic well-being or gender equality. Further still, the role it plays should be in the wider public interest, which means that it must be sustainable.

My view is that currently the levels of unpaid care giving are unsustainable, not in the public interest, breach people’s rights to family life, the rights of children, the right to independent living, people’s health and well being and undermine gender equality.  People in relationships of support – whether labelled ‘carer’ or ‘cared for’ get an extremely raw deal.

And that’s precisely why I believe Carers UK insistence on the tactic of claiming that Carers ‘save’ the State £119 Billion a year, which they argue is a ‘vital message to government and society’ in ensuring the value of carers is recognised is not only largely ineffective in securing meaningful change, but also counterproductive.

In a speech I gave to Carers UK conference in December 2006 (as Head of Policy for the Disability Rights Commission) I questioned whether:

‘the modest gains made on the back of the argument that carers save the state £57 billion a year are in fact a product of the Government’s genuine recognition of the value of what carers do….Or simply an expression of relief that they do it.’

And suggested that:

‘Just as pity for disabled people had unhelpfully shaped responses to them, perhaps gratitude is a similarly harmful response to the situation of unpaid carers?’

It’s a view that I’ve maintained and which I believe has even more prescience given the massive deterioration of the public finances since.

I shall come to the matter of whether the £119 Billion figure stacks up in a moment, but first I want to talk about the framing of this figure as a ‘saving’ and the tactical value in doing so.

Let’s first consider some other facts and figures: the almost 30,000 adults with a learning disability whose sole source of support comes from parents aged 70 and over, many too frail to continue providing support and with no succession plan for when they are no longer around; the quarter of a million children ‘caring’ for their parents; the 1 in 5 unpaid carers at ‘breaking point’; the numbers who leave the security of paid employment and endure poverty as a consequence.   It seems odd to say the least having highlighted these massive costs of over-reliance on unpaid care only to blow them all out of the water by framing unpaid care positively as providing such an enormous ‘saving.’   This is especially so in the context of austerity.  Insofar as the figure is accurate, what it reveals I would argue is not a saving, but an enormous and dangerous level of unsustainable under-investment which is set to become even more exposed over the coming decades as our society ages.

The decision to position carers as ‘saving’ the State money also seems to be intended to contribute to a ‘hero’ narrative – the idea that ‘carers’ do something beyond that which most human’s could endure.  David Cameron sums this narrative up nicely in his statement for National Carers Week ‘Giving up your own time to take care of someone else is one of the most selfless things that anyone can do. Caring can be rewarding, but Britain’s carers make great personal sacrifices to help others, and it’s absolutely right that we should recognise and celebrate the extraordinary work they do.’   Without doubting the considerable personal sacrifice that unpaid care involves for many, this hero narrative is unhelpful on so many fronts.  By seeking validation it fails to challenge the idea that unpaid care is anything other than a positive thing, despite the evidence to the contrary for all parties concerned. It reduces care giving to an act of individual charity.  In doing so it helps ensure that ‘caring’ remains a personal and private matter when it needs urgently to be made a matter of public concern and collective responsibility, just as childcare has gradually become.  It locks carers into a narrative about their own lives which I do not believe accords with their aspirations.  Many do not wish to make the level of sacrifice that they do, but to admit so is to allow the hero mask to slip.  This helps maintain the orientation of public policy towards helping unpaid carers to provide more unpaid care, not towards relieving them of the responsibility with more properly funded social care for those they support, allowing both people involved to establish or re-establish the natural relationship between them: parent and child, husband and wife, partners, friends.    By saying that society would fall apart without unpaid care and claiming that it is worth more than the NHS all discussion of alternatives is shut down altogether.  It can also lead to patronising and vacuous campaigns like this one from Carers Trust highlighting how important a good breakfast is for carers.

Further, this narrative relies on the objectification of those being supported, denying disabled people the equal status that is theirs as a right.  It helps sustain the view that disabled people’s right to independent living is unobtainable and fuels prejudicial attitudes of disabled people only as dependents.  The notion of people making an ‘extraordinary sacrifice’ to provide unpaid care also implies personal tragedy and burden, again undermining the status of disabled people in our society (as evidenced in the choice of words, and outcome perhaps, of this judgement regarding the bedroom tax).

As for the figure itself, what it does not take account of are the costs of unpaid caring – the costs of social security, to the NHS, in terms of household poverty, of lost economic productivity, of inequality for women, of family breakdown – all of which need to be included on the balance sheet before setting out ‘savings.’  It is the identification and communication of these costs which I believe would be far more likely to achieve the sort of public recognition and political pressure that might secure people in relationships of support the policies and resources that they so desperately want, which is in accordance with their rights and which is sustainable for the future.  Only talking about savings further consolidates the idea that care is only a cost rather than a part of our national infrastructure desperately in need of and ripe for investment as we might think of roads, hospitals, schools or childcare.

Sadly however Carers UK seems to be unable to let go of the savings message. And sometime in the near future the figure will be updated and we shall see another enormous leap in the ‘savings’ made to the State by children, people at breaking point, and people too old to support their adult children.   And when we do, whoever is Prime Minister will thank carers for their extraordinary contribution. Very little will actually change just as it hasn’t for much of the time the savings case has been made.

Without a change in the story, I fear things will probably actually get worse.

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5 thoughts on “£119 Billion for a pat on the back?

  1. I don’t think it I particularly helpful to contribute to the rather popular notion that informal family carers are a problem that disabled people need to be freed from.

    I am not overfond of the patronising discourses either, Nor do I spend much time seeing myself as a “hero”. Carers, like disabled people themselves, are not a homogenous group – while there are some who would be delighted to be “supported” back into paid employment, and have more understanding from their employers, some of us would just like a bit more help and support to do what we have become good at better, and yes, to have the economic value of what we do acknowledged. Family relationships can get complex. Most of us would prefer not to depend on others or perhaps to have others so heavily dependent on us. The “rewards” of caring aren’t entirely based in masochistic self sacrifice though, but also on the strength of love and commitment. We aren’t some special group whose interests are automatically at odds with those we care for – just people who find ourselves dealing with difficult situations as best we can – mainly because an awareness that if we don’t care, the options available aren’t great. To put it mildly. I am all in favour of choice, and a serious commitment to more independence, but find it a bit hard to believe that carers are an obstacle to achieving those things.

    In the earlier article, you asked the very pertinent question “Who cares?” A rather clearer look at the plight of carers (instead of the stereotypes ) would be illustrative of the problems that beset disabled people as well. But that question needs a related question “Who pays?” Funding, or the lack of it, is the question that really needs tackling.

  2. You raise some very pertinent questions and issues, especially about the actual costs and benefits associated with unpaid care. For example, I think of the impact on employment for those who take time out to care for say elderly parents. It is definitely naive (and far too easy) just to toss out figures without looking at the implications, economic, social, psychological, health … for all parties concerned.

  3. Dear Liz

    Thanks for your comments. Just to be clear, I am not identifying family carers as ‘the problem’ – rather I am suggesting that the campaign narratives which claim to advance the interests of family carers and those they support fail to respect the rights of disabled people, and at the same time are – in my view – failing to advance the rights of family carers as well. Ideally I think we should strive to get beyond the idea of ‘carers’ and ‘cared for’ and talk about the rights of people in relationships of support, with as you say the question of funding at the centre.

    Best wishes, Neil

    • I don’t fundamentally disagree with any of the things you say. What troubles me is that the people with the power to effect radical changes DON’T start from figuring out the funding, but use the language of “rights”as a smokescreen to put in place even less helpful policies. Broadly, as a long term carer who HAS saved the at least the local authority a small fortune, I do see us as a family unit with common, not opposing, interests in change.

  4. In the present economic and ideological framework though it is a very short step from “make it easier for carers/.disabled people to work” to “make it compulsory, stigmatise them if they dont, and put in place a whole lot of hoops that will make their lives much worse.”

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