Friday 22 February 2013

Social Care Is Not A Lifestyle Choice

What is “social care”?  If you're a care professional or family carer, like me, you will know; but to most people it’s a nebulous term, whose parameters, for both practical purposes and funding qualification, are endlessly shifting.

This has bred some assumptions among those who have not yet called upon it themselves.  I say “not yet”, for with greater life expectancy we may all find ourselves in need of care in some form.  And with social care so much on the public agenda, I have been surprised and sometimes angered at the lack of understanding of what it can actually mean.

Many people – not just laymen, but politicians and pundits who issue statements and make policy – appear to have in mind the milder end of the spectrum: “service users” who are merely frail and perhaps isolated, who need someone to shop for them, cook a hot meal, and help with household chores and mobility issues.  This is the section of society that might well benefit from a bit more neighbourly support, as suggested by former Care Minister, Norman Lamb*.  

But at the other end of the scale are those with severe long-term or degenerative physical or mental conditions, who need 24-hour supervision in a secure environment; who may have challenging behaviours; and who ultimately need help with eating, drinking, intimate personal hygiene and continence – everything, in fact. Few people who have not seen this first hand truly grasp how all-consuming it can be.  

My 90-year-old mother never asked for care, because she didn’t believe she needed it.  She still doesn’t.  But she has dementia, a syndrome of degenerative disease which has been gradually claiming her mind and her faculties for upwards of a decade.  Lack of insight is often a feature of such cognitive disorders – she simply doesn’t recognise her own inability to take care of herself. 

Over the years, I assumed responsibility for all aspects of her daily life: finances, admin, shopping, cooking, cleaning, laundry, household maintenance, appointments with doctor, dentist, optician, chiropodist and hairdresser, even keeping up contact with her friends.  I did everything I could to keep her safe and well in her own home.  But it wasn’t enough.

Loss of short-term memory eventually robbed her of the ability to complete even basic tasks unaided, such as making a cup of tea or washing her hands, as well as capacity to follow instructions or reminders. It made her feel constantly abandoned, because she couldn’t imagine the proximity of anyone out of sight and had no sense of time to recall when they were last there.  

The simplest technology - telephone and Aid-Call alarm - became a mystery to her, meaning that she couldn’t call for help in emergency.  Unable to interpret hunger pangs, remember there was food in the fridge, or know what to do with it, she forgot to eat. And when she stopped recognising the house where she had lived for 40 years, I knew that she needed round-the-clock care that I could no longer provide alone.  It was a decision I had dreaded all my life; but it was the only way left to protect my mum – the worst thing I have ever had to do. 

So when I hear talk of families supposedly "shunting their relatives into care" and “expecting the state to take their responsibility”, I just wish those who think it’s easy could know how it feels, the long, long road to that point, the many crippling years of unsupported, unpaid family care behind closed doors before crisis forces the issue - and indeed the plight of those who have no family to care in the first place.

Bad enough to go through all this, without also having to make complex funding arrangements at such a stressful time.  At present in England, if the person needing care has less than £23,250 in assets, including their home, they are notionally eligible for funding – if they are deemed to qualify in terms of care need.  

However, this qualification is far from straightforward and varies between different local authorities; assessment can be a lengthy and hugely bureaucratic process. Even those deemed to qualify may only receive part funding, if their assets fall between £23,250 and £14,250.

Those with assets above £23,250 receive no funding at all.  This effectively means that anyone who owns their own home will have to find 100% of the costs for their care – which in residential settings can be well over £1,000 per week.  (Local authority rates for the same care, in the same home - tariff set according to how much funding the authority receives  from central government and council tax - may be less than half this, but self-funders have to pay private rate.  Self-funders subsidise local authority care places on average by 43%.)  

And as many of us know (but politicians and economists don’t seem to credit), assets are not the same as ready cash.  For most people, their home is their major asset; and if they are incapacitated, they are hardly in a fit state to negotiate its sale and clearance.  This usually falls to family, who may also have to conceal the distressing news.  

For some who cannot instantly raise the necessary funds, deferred payments may be available (since April 2015), meaning that the local authority will pay care fees at the time, with costs being reclaimed from the person’s estate after their death.  However, such agreements also require a lengthy and complex application process, which may be impossible to complete (or even instigate) before a person needs essential care.

It’s said that bereavement and moving house are two of the biggest traumas in life.  Well, dementia is an ongoing bereavement; and in order to meet care costs, many of us have not only to settle our relative in an unfamiliar and undesired environment, but at the same time to organise disposal of the family home – the last vestige of those precious lifetime memories that can no longer be shared. 

As an only child with no partner or children, I had to do this alone.  It took me the best part of two years of back-breaking, heart-breaking work.  

But what about the government’s long-awaited response to the Dilnot funding report – its 2015 election pledge 
to cap the cost of social care to the individual at £72,000? Health Secretary, Jeremy Hunt, said it meant that “no-one will have to sell their home in their lifetime to pay for residential care”.  Did it?  No.  

Firstly, note the qualifying phrase “in their lifetime” – an acknowledgment that most people would not be able to find £72K without selling their property (though if you are wealthy enough to "forget" buying seven luxury flats, perhaps that's easy to overlook).  Universal deferred payments would at least allow those who qualify (and who know how to apply) to pay after their death; but after the 2015 General Election the £72K cap was shelved.  

Despite this, in the run up to the General Election of 2019, Conservative Prime Minister Boris Johnson and Jeremy Hunt's successor, Matt Hancock, once more made the exact same pledge that "no-one will have to sell their home to pay for care" - without detailing any practical plan to deliver it.

Even if a Care Cap did come into operation, as proposed in 2015, those who had already paid this amount or far more, would not be exempt from charges; the fiscal clock wouldn’t start ticking until the legislation came into effect, with no back-dating – whatever you’d spent to date, the dial would go back to zero and you would still have to pay another £72K (or whatever the finally agreed cap) before the state picked up the tab. And that’s only crossed off at their end according to the minimum local authority rate – if you are paying a higher private tariff, it could take twice as long (and far more actual cash) to reach that cap.  

Plus you would still have to pay "hotel costs" - board and lodging (as distinct from "care"), up to about £12,000 p.a.  

That’s an awful lot of people already in care homes (or receiving paid care at home), and those who will go into care before a cap is ever implemented, who will still have to sell their homes and pay maybe far in excess of £72K just to be safe, secure, fed, watered, bathed, dressed, and helped with continence issues – simple things that most of us take for granted every day. With the average stay in residential care being two years, most of those will die before reaching the cap and becoming eligible for any state help.  To put it bluntly.  And the government knows this.

But shouldn’t those with assets rightly fund their care, even at such punitive levels, you might ask, when there’s so little public money to go round? 

One argument is that sale of the family home is fair game, because the person “doesn’t need to live there any more” and “it’s just about the children’s (unearned) inheritance”.  This equation of assets and costs may look straightforward on a balance sheet.  But it’s not just a question of accounting; it’s people’s lives – and conditions such as dementia don’t affect one person in isolation.  

Many, like me, have already given their main earning and child-bearing years to looking after their loved ones, before conceding them to paid care – and then share huge financial penalty, on top of the pain of seeing their relative’s decline and shouldering the practical and emotional burden of dismantling the home that represents their shared life. 

If you say, “well, tough”, and still hold the principle that those with means should pay full cost for services because it's simply "fair", why apply it only to the old, the frail, and long-term disabled who need “social care”?  To play devil’s advocate, why shouldn’t other relatively wealthy people pay for things that are now part of public service provision? Education? Routine healthcare? Elective treatments, such as IVF?  

In the run-up to the General Election of 2017, Theresa May's government proposed to raise the amount of assets a person could retain after deduction of care costs from £23,250 to £100,000. But this would mean most self-funders would still have to sell their house to release sufficient equity to pay the charges until this amount was left; and far more people would be required to pay under the means test, which would now include the value of a person's home not just for those going into residential care, but also those receiving paid care in their own homes (for whom the value of the house is currently excluded).

The government cited this proposal as "intergenerational fairness", arguing that younger people should not have to pay through general taxation for care of the elderly and disabled.  But by that reasoning, older people and the childless should not have to pay for education of children; those who are not the victims of crime should not have to pay for policing; those whose house doesn't burn down, should not have to pay for a fire service.  The application of a means test for unavoidable care needs is an injustice that strikes at the very principle of the welfare state: shared financial risk, to provide for shared benefit.

It may surprise you to know that even those with dementia in end of life nursing units, bed-bound, doubly incontinent, 100% dependent on help for eating, drinking, continence, mobility, and all other aspects of their existence do not necessarily qualify for NHS Continuing Healthcare funding, which is supposed to care for those with severe needs - because dementia is not in itself treated as a terminal illness, whose chronically debilitating symptoms are due to disease, but as "social care", which is conveniently excluded from the NHS budget. 

CHC funding is assessed under a number of domains that rate the practical impact of health needs on behaviour, risk to self and others, ease/difficulty of  management by care staff, and the complexity of interaction between those domains - with aggressive, disruptive, and unpredictable behaviours attracting higher scores.  

Those who come into residential care after being sectioned under the Mental Health Act receive all their care fully-funded by the NHS with no means test, although their ongoing needs may be no different to those of a person in the same home who is being charged 100% costs under social care.  How is this fair?  

And even those who do qualify for CHC may in practice receive only part funding from the cash-strapped NHS, with more than 40% of costs sometimes being charged to the individual in top-ups by the care provider under guise of "lifestyle choice", to make up the shortfall between NHS Clinical Commissioning Group (CCG) contribution and private tariff/actual costs, even though this is technically illegal under NHS rules (see last point under FAQs on that link) and the provider declines to publish any breakdown of income versus expenditure for transparency.  

It should be noted that, unlike local authority-funded social care, it is not legally permissible*** for the NHS to apply an arbitrary cap or tariff to CHC contributions; once a person has been deemed eligible for CHC funding under primary health need, assessment should result in a personalised care plan that meets and fully funds all their assessed health and associated care and support needs**** - i.e. both clinical and social.  In March 2018, the Equality and Human Rights Commission launched a legal challenge to a number of CCGs to clarify this point.

So what’s the difference between hospital treatment and residential or home care in terms of immediate, practical need to keep a person alive and well?  None.  Yet one is fully funded at point of need and the other is not. 

I agree that it’s reasonable to make some contribution for long-term care, if you can afford it.  Those like my mum are lucky to have enough savings to provide some choice of care, when others struggle to secure even basic public funding.  

But at A&E you are not asked for cash up front before receiving treatment, not told to sell your house to pay for chemotherapy or dialysis; for those with long-term, degenerative conditions, residential care can be just as urgent and essential. It is not a lifestyle choice.  

A version of this post was given as a speech at the launch of the Centre Forum report on social care funding, Delivering Dilnot (to which I contributed), at the House of Commons on 8 January 2013.

* Norman Lamb was Care Minister in the Con-Dem coalition government to May 2015.

** On 17 July 2015, it was announced that the Care Cap would now be "deferred" until 2020 - effectively shelving it.  Some may consider it was/is never intended to be implemented at all

*** National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (Revised October 2018, published March 2018): pg 50, clause 180.

**** National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (Revised October 2018, published March 2018): pgs 50 & 51.

Some points added in 2015, 2017 & 2018 to cover more recent developments.

The Dilnot Report can be read in its entirety here.

And read my hypothesis of why women are hit hardest - socially, professionally, and financially - by the current social care system.


  1. Fabulous, thank you.
    Now for your views on the #dementiatax?

  2. May have to wait a while for me to write that one up here, Lynda! But I have been tweeting my thoughts...

  3. Thank you for the clarity of this exposé on the unfairness of the current system of health versus social care funding.

    1. Thank you. Sad to say, I first posted it in 2013 and the situation has since deteriorated, with politicians not only kicking it into the long grass, but further blaming families for perceived (or wilfully misrepresented) fecklessness and berating them to "do more" (both practically and financially), when many are already stretched to breaking point.

      This is woeful short-termism, but arguably also has implications for equality, as I've discussed in the companion post, 'Socialcare: a Women's Issue?'

  4. Very interesting and informative. Thank you, just hoping my daughter never has to go through this.

    1. Thank you. I hope so too. With hindsight though, I'd say it's good to talk with family and friends or professionals about long-term possibilities ahead of time if you can & do some contingency planning, e.g. power of attorney, making your wishes known, doing a bit of research about supported living and care homes in your area, maybe moving nearer to family while in good health, in case it ever does become an issue.

      If you don't ever need to action these plans, all well and good; but if you do at some point in the future, you might be able to lessen or defer the crisis by accessing support sooner than we did. Above all, don't be afraid of the notion of care homes. So many people shut out the whole idea and then find themselves having to find a place at short notice when it becomes an emergency, as happened to us. The social care system is a labyrinth, but there are good people within it; I'm immensely grateful to the residential care staff who have supported my mum and me over the last 7+ years.

      Meanwhile, if you know anyone already caring for someone in this situation, there's a specialist charity, Dementia Carers Count, which runs support courses for family carers: These courses have been developed with input from a panel with personal experience, including me; in the longer term, there will be a national resource centre in the Midlands, scheduled to open in 2020. Thanks for reading. All the best.