What about the catastrophic cost of not having a life to live?

by Neil Crowther

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Many people welcomed today’s social care report by the House of Lords Committee on Economic Affairs, which calls for an immediate injection of £8 billion to fund social care, followed by the phased introduction of free personal care over the next 5 years, to be ‘available universally by 2025/26.’ The report is significant, both given the political support it indicates but also because it comes hot-on-the-heels of reports by the left-leaning think tank IPPR and right-leaning think tank Policy Exchange (with explicit support from Jacobs Rees Mogg) both calling for free personal care paid for through general taxation. There would appear to be a definite shift towards an idea that only a few years ago seemed like a pipe-dream in England and one which seems, on the face of it, fairer and more progressive than any other funding option that has been mooted in recent times.

I absolutely support access to care and support being based on the same principle as the NHS: free at the point of need and funded through general taxation. But I have some big caveats about this and similar proposals.

‘Personal care’ is very narrowly defined

The cost of moving to the principle of free personal care appears to be to lose the principles of wellbeing on which the Care Act is founded.  Included in the definition of ‘personal care’ is:

  • Personal Hygiene: bathing, showering, hair washing, shaving, oral hygiene, nail care;
  • Continence Management: toileting, catheter/stoma care, skin care, incontinence laundry, bed changing;
  • Food and Diet: assistance with the preparation of food and assistance with the fulfilment of special dietary needs;
  • Problems with Immobility: dealing with the consequences of being immobile or substantially immobile;
  • Counselling and Support: behaviour management, psychological support, reminding devices;
  • Simple Treatments: assistance with medication (including eye drops), application of creams and lotions, simple dressings, oxygen therapy;
  • Personal Assistance: assistance with dressing, surgical appliances, prostheses, mechanical and manual aids. Assistance to get up and go to bed. Transfers including the use of a hoist.

Excluded are ‘other needs, such as housework and shopping’ according to the report. But it’s clear that a whole raft of other supports that can be instrumental to promoting the wellbeing principles in the Care Act are also missing here.  On the one hand, we might conclude that by relieving people of the costs of these elements of life and limb care, people may be better positioned to re-direct their personal resources towards achieving wider matters of personal and family wellbeing (the ‘partnership approach’ to funding talked of in the report).  I also think Caroline Abrahams makes a good point in the report when she is quoted as saying:

‘If you provide people with a bit more support, they are more inclined to want to care informally. For example, neighbours and friends are often terrified that if they start doing help for someone, they will suddenly be landed with it—they will carry all the responsibility themselves and be left holding the baby, as it were—but if they thought there was better support around them, they would be more inclined to help.’

But many people, including many adults with learning disabilities, don’t have access to such resources at all. For many others, networks of informal support are not self-executing but rely upon expert organisations sourcing and marshalling support and  making connections, such as the work of Circles, Local Area Coordination or Community Catalysts for example.  The sheer number of older people expressing loneliness as their primary concern should also be a clue to the fact that reducing social care to ‘personal care’ – even if free – could prove to be a false economy if it means other support is not funded.

Would free personal care be the only available support that people can access without payment? If so, a measure which nobly aims to protect people from the catastrophic costs of paying for life and limb care could come at a catastrophic cost to anyone who needs some support to secure or maintain a life to live. In fact it could extinguish the vision of personalised care and support to promote wellbeing in the Care Act altogether, while creating a raft of other social and economic problems.

Related to this, the report also contains another problematic (in my view) argument that appears to have become received wisdom, when it says a principle of policy should be to:

‘Reduce the disparity between entitlement to help in the National Health Service and the adult social care system, ensuring that entitlement is based on the level of need, not the diagnosis.’

This is misleading. Arbitrary and inconsistent though it may be, access to Continuing Healthcare is based neither on level of need or diagnosis, but on the nature of a persons need and whether they have an ongoing need for healthcare. Of course, if they do, then the totality of meeting the costs of their care transfer to the NHS and is free to them. But there are many people who require care and support who do not have ongoing healthcare needs. We should in my view support extending the same free at the point of need principle to social care, but arguing for parity of esteem with Continuing Healthcare as though comparing apples with apples further obscures crucial features of social care as embodied in the Care Act wellbeing principles and seems dangerously reductive.   The fact that our forthcoming research into media discourse on social care finds its recipients frequently referred to as ‘patients’ as in this recent article should give us reason to pause for thought about the impact of not distinguishing social care from healthcare in this way.

Only for those with substantial and critical needs

The proposals are also targeted only at those assessed as having substantial and critical needs, in line with the baseline eligibility threshold introduced in the Care Act.  This isn’t new of course and reflects what the majority of local councils already do.  But this generally means people have to reach crisis point before accessing free personal care, and presumably self-fund or go without up until that point. How does this support both the emphasis on prevention in the Care Act and the forthcoming Prevention Green Paper? Won’t this proposal further shift all resources – including for prevention and short term care – towards – to borrow the metaphor – placing more ambulances at the bottom of the cliff, rather than stopping people from falling over the cliff in the first place? Where is early action and invest-to-save in all of this thinking? Is focusing all public resources on personal care for people with substantial or critical needs, in the absence of wider investment, really the best use of public resources?

Make a crisis out of social care and get a crisis service

I know some will count today’s report as a success of the crisis narrative – as evidence that it has cut through. They are probably right. But as Julia Unwin has said of social housing ‘If you talk about housing in terms of desperation and need, then you can’t be surprised if it becomes an emergency service’. Likewise, if we frame policy as a response to a crisis, don’t be surprised if we just get a crisis response.

We should very much welcome the principle of free at the point of need care and support, paid for out of general taxation. Evidence shows that while the public struggles to understand what social care is, they express shared values of mutual obligation and the need to support others in society, which are foundational to any model of shared investment. Social care is in a mess and the debate on funding has gone and on. Today’s report does feel like a breakthrough, but it is set against a highly regressive vision of what social care should be and do in modern Britain.

Let’s treat the House of Lord’s report and others advocating free at the point of need care and support as valuable building blocks.  But let’s not lose sight of the vision of the future we want, where we can all: ‘live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us.”

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One thought on “What about the catastrophic cost of not having a life to live?

  1. The NHS has belated recognised that prescribing medecines is not the only answer and has moved towards concepts such as Social Prescribing. If social care is led down the path of personal care services only, it will risk missing the point of the preventative and palliative effects of wider wellbeing activities, just as the NHS formerly did.

    Liked by 1 person

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