The reform of social care will take more than money

The House of Lords Economic Affairs committee has called for free personal care in England, on lines similar to the system in Scotland.  “Under free personal care individuals would therefore only receive funding for support with these basic activities of daily living, based on the minimum threshold of eligible needs as defined by the Care Act.” They are recommending a major increase in the funding for social care, so that care can be delivered on much the same terms as health care.  However, they accept that people should pay accommodation costs themselves, with means-tested support, and they recognise that this might entail “catastrophic accommodation costs” which might have to be subject to a cap.

This has been welcomed as a radical proposal, but it doesn’t touch on most of the problems that go with social care.  We’re still thinking of social care as a set of needs which can be satisfied by specific cash payments.  The Lords report explains:

“Personal care means essential help with basic activities of daily living, such as washing and bathing, dressing, continence, mobility and help with eating and drinking. It does not include other areas where support might be needed, such as assistance with housework, laundry or shopping.”

I don’t believe that a system based on this approach can ever deliver what people want to see.  I don’t believe people want, or are comfortable with, successive 15 minute visits from a team of people who bathe them, or dress them, or help them to bed.  I don’t believe that what most people really want in life is to manage a rota.  I don’t think that providing for a series of events, sold as if they were commodities, meets people’s human needs.  What we should be allocating is time with a person, and that calls for a different approach to assessing needs from one that focuses on whether or not someone needs help with brushing their teeth.

Self-directed support makes little headway

Self directed support in Scotland hasn’t exactly shaken the rafters – a report in 2014  called the system “nebulous” – but an Audit Scotland report suggests it “shows many examples of positive progress”.  The vague welcome is hardly justified; this is a system that’s hardly stirred into life at all.  The Social Care (Self Directed Support) (Scotland) Act offers four  “options” for self-directed support:

  • Option 1  Direct payments
  • Option 2  The individual chooses the support and the authority manages it
  • Option 3  The authority chooses the support and arranges it
  • Option 4  A mixture of options 1, 2, and 3.

It’s highly debatable whether option 3 can be thought of as self-directed support at all, and it’s far from clear what qualifies as option 4.

An Audit Scotland report claims that  “at least” 53300 people, out of 208,000 adults receiving non-residential support, are getting SDS.    Of that figure,

  • 11% chose option 1
  • 9 per cent chose option 2
  • 75% chose option 3, and
  • 5% chose option 4.  (para 24)

So out of that 53,300, something between 10600 and 13330 people chose an option.  Direct payments have increased, from 3680 to 7530 people 2010-16,  but as a proportion of more than 200,000 people it’s a very long way from the ‘total control’ supposedly offered by SDS.

It’s also troubling that at this stage the evaluation has not been able to show any clear advantage in personal budgets, even for the selected few who receive them.  A few qualitative comments show that some people support the idea in principle; other comments point to difficulties in knowledge, implementation, resources, restrictions from the local authority and a lack of choice.  My own experience as a carer has been that assessment came cursory and late, with no effective choices at all.  I’ve previously expressed some scepticism about personalisation; developments to date have done nothing to change that view.

Learning about disability provision in France

I spent the back half of last week in Lyon for a forum on the ‘disability sector’.   It was an international conference.  I was there to explain alien aspects of the British system, such as care packages, personalisation and welfare reform; others were there from Norway, Germany and Italy.   I’ve had to learn some new vocabulary – for example, that people with disabilities are no longer personnes handicapées but personnes en situation de handicap, and learning disability is sometimes (but not always) rendered by handicap intellectuel, sometimes by les personnes ayant des difficultés d’apprentissage.    Beyond that, there’s always the problem that professionals in France routinely talk in acronyms, such as the ESMS (établissements et services médico-sociaux) or the CPOM (contrat pluriannuel d’objectifs et de moyens) – I’ve only deciphered that one after coming home and looking it up, and I still don’t know what it really means.  There were interpreters at hand, so I chickened out and spoke in English.

It’s more of a culture shock to understand some of the differences in provision.  None of the agencies represented, in a conference with more than 300 managers attending, dealt with older people.  France still makes heavy use of residential care for younger disabled people.  There was also a moment of incomprehension when the German speaker asked about the  representation of people with disabilities in monitoring groups and got an answer about institutional accountability instead.  However, there’s a level of funding that many people in the UK would find enviable.

The problems with social care

Social care has been unmanageable for some time, and it’s not simply down to the actions of this government, or the one before it, or the one before that.  The problems run much deeper than any quick fix can address, but many of them can be laid at the door of two very long-standing policies, and I can see no way of resolving issues while those two policies stand.

The first failing policy has been in place for more than fifty years.  Circular 2/62, on Development of Local Authority Health and Welfare Services, declared that “Services for the elderly should be designed to help them remain in their own homes for as long as possible.”   The model sounds plausible, but it is based on the highly questionable gamble that people will never need more intensive support.  This is, quite literally, catastrophic – it generates sudden crises.  It means that we leave people in place until there is a catastrophe, usually a fall or hospital admission.  This leads directly to people being trapped in acute hospitals until they can get an emergency admission into residential care, often settling for a third or fourth choice because that’s all there is.   We need people to be settled in lifetime accommodation long before the crisis happens.

The second failing policy stems from the Griffiths report of 1988, which attempted to provide personalised, individuated social care through the creation of a quasi-market.    Provision based on this model has signally and continually failed to provide people with the level of support they need.    It’s not down, as many supporters of the policy claim, to lack of resources.  Market provision can’t work by providing a flexible response – it implies that support will be fragmented, offered in short bursts of time.   Individuated responses are spectacularly inefficient; they’re also desperately expensive.

The push to personalisation has been based in a futile attempt to implement an impossible dream.  Individuated policies only work for people whose needs are more limited.  The more intensive the support has to be, the more has to be provided in a distinct location.  We spend a great deal of time and money pretending that residential care is really a modified form of domiciliary care, with added accommodation: it isn’t.  A greater commitment to residential care is the only way out of this bind, because residential care brings together trained staff, facilities and resources in the places that allow them to be used for people in need to the greatest effect.

Local government and devolved benefits

There’s an intriguing disagreement reported in the Herald between disability organisations and CoSLA, which represents local authorities.  CoSLA has been arguing for building up the role of local authorities in benefits administration.  At present the Scottish Local Authorities administer Housing Benefit, Council Tax Reduction and the  Scottish Welfare Fund; they are also effectively responsible for support in social care, including the fashionable (and misguided) trend to individual budgets.  They stand to lose responsibility for a large slice of the work relating to Housing Benefit (relating to working-age benefits).  That has raised questions about the viability of the operation and the prospects for people working in that field.

Others have expressed concerns about the possibility that disability benefits will be transferred to local authorities.    Tressa Burke, of Glasgow Disability Alliance, is concerned about cuts – a reasonable fear, because the experience of local authority administration to date has been that social care is expected to work within fixed budgets, and benefits don’t work that way.    Sally Witcher, a former director of CPAG who is now CEO for Inclusion Scotland, comments that there will be a ‘postcode lottery’ and points to the problem of people transferring across local authority boundaries.  (As a carer myself, I’m more worried about the discontinuity of care: quite apart from the effect on personal relationships, putting together a fresh care package in Scotland can take months or even years.)

The main concern raised by CoSLA’s statements to date – such as the delivery plan for people with disabilities –  is that they’re based on a narrow concept of disability, dominated by the model of ‘independent living’.    I’ve sat before now through a long presentation arguing for disability benefits  to be unified with social care, a prospect which appals.  It implies  the replacement of entitlements with assessment and bargaining within the constraints of fixed budgets;  a system where assessments of need are geared to what’s available;  and a subordination of all the other objectives of disability benefits – social protection, income smoothing, compensation, rehabilitation, empowerment and so on – to the priorities and demands of the social care budget.

There may be room for compromise.  A CoSLA spokesman is reported as saying that “councils are not suggesting they should make decisions about who gets benefits or how much they get.”  If that’s right, this could be taking as proposal for something very different, focusing on effective benefits administration, and there’s a good case to think about administration at local levels.  One of the first priorities has to be to ensure that benefits are not swallowed up by an misplaced identification with social care.


Coercing people with dementia

A report from Sweden caught my eye.  In Sweden, the law forbids restraining older people with dementia  in hospitals and care homes.  A newspaper, Expressen, has argued that this is unrealistic and unmanageable – they argue for “common sense”.  “It’s a crazy system in which members of staff can be punished by law for caring for confused elderly patients if the supervisory authorities find out about it.”  (The report is here, in Swedish – the first link, in English, has most of the point, but I fed the article through Google Translate to get the gist.  The translation says that allowing people greater personal freedom is “dangerous and inhumane”.)

This led me to a fascinating research paper in Nursing Ethics, published in 2013.   (I have only given the Pubmed reference in the link – the full article is restricted to subcribers.)  Based on qualitative, open questions, the research identifies three main classes of response.  Coercive measures include mechnical restraints such as bed guards, safety belts and locks, non-mechanical restraints (mainly by nursing staff) control through medication, and electronic surveillance.  Preventative measures cover the same sorts of thing, but used with consent or for limited periods.    Then there are strategies to adapt to greater freedoms for people with dementia – extra staff, better training, risk assessments and adapted procedures.   It seems that many of the respondents do, knowingly, break the rules in some respects.

It doesn’t follow, however, that this is bad law.   To be effective, a law has to be enforceable.  Once  adjustments are made for ‘reasonable’ breaches, it becomes difficult to know when the law applies and when it doesn’t.    No-one is going to prosecute a nurse who takes a patient by the arm to lead them back to the ward – but if the law is changed to allow for that, and a few hundred other possible actions, it won’t work at all.  The substance of the Swedish law is right – people need to be treated with dignity and some personal autonomy.  The more vulnerable the person is, the more that protection is needed.

A pensioner goes walkabout

A report in the Dundee Courier this morning concerns a manhunt (or womanhunt, if you prefer) for an 86-year old  from Dunbartonshire.  When her care workers arrived at 7 am yesterday, she wasn’t there.  A search has been mounted with police dogs, a helicopter and the co-operation of the Ministry of Defence.  It’s not unusual for the police to be involved in searches for missing pensioners – in a case last year in Birmingham, they”searched the local area, made enquiries with relatives and checks with taxi firms, public transport and health care providers” – but the scale of this search raises questions about how we ought to respond.

There is nothing unusual about people with dementia going out.  People with dementia tend to do things that they’ve done throughout their adult life.  It’s often the context that makes the actions seem disturbed  – people going for a walk because they think they’d like to take a walk, cooking in the middle of the night, going to the shops when everything is shut, lighting a fire when they’re cold, deciding to visit their family while not remembering that their family don’t live where they used to.   In the bad old days, which are not that long gone, older people would routinely be incarcerated in psycho-geriatric wards, typically with locked doors.  When we committed ourselves to keeping people in their own homes, we took on a degree of risk.

What kind of response would be proportionate?  I don’t know; I don’t even begin to have an answer.   But there has to be a better way than helicopters and dogs.

The manifesto for mental health

A number of organisations dealing with mental health have issued a ‘manifesto‘, intended to influence policies in the run-up to the 2015 election.  There are several measures I’d endorse wholeheartedly, including better funding, minimum waiting times for access to support services, support for new mothers and improved physical health care for people with mental problems. 

The only point I’m not really convinced by is the idea that there should be “integrated health and employment support to people with mental health conditions who are out of work and seeking employment”.   ‘Integration’ rarely works; when everyone is expected to do everything, things don’t get done properly.   (I asked a nurse recently:  “Are you asked to treat patients holistically?” and she answered, “Oh yes, it’s just that we’ve not been trained to do that bit.”)  We can’t get different parts of the health service to communicate adequately with other parts now, and I’m not sure that adding further services to the brew is going to deliver any more effectively.  

The cost of free services in Scotland

Robert Black, who recently retired as Auditor General in Scotland, argues in today’s Scotsman in favour of reviewing the cost of universal services – particularly free personal care and free transport. He acknowledges that the cost of free prescriptions and eye tests is less and that they have a preventive function. His position has been consistent; it was formerly argued in an Audit Scotland report, Scotland’s public finances.

Part of Bob’s case is unarguable – that public expenditure has an opportunity cost, and we should always be prepared to consider what the implications are of one decision relative to another. Some of the figures he uses, however, are contentious. The increase in prescription costs to £1 billion is a general cost of the NHS, not a specific cost of ‘free prescriptions’. They cost nearer to £80m, though I’ve been struggling to find an accurate figure – the rest of the £150m cited in costs is down to eye tests, which have been separately justified in terms of savings elsewhere. We’re told that the cost of the National Concessionary Travel Scheme (bus and travel passes) ‘could rise’ to £500m. Well, it could do anything in theory; much depends on inflation, much on future policy; but the budget for 2012-13, 2013-14 and 2014-15 has been set at a constant £194m. There are certainly pressures on the public finances, but it’s not clear that it’s the universal benefits currently in dispute that are driving them.

Old people in crisis

The maintenance of old people in their own homes for as long as possible has been an objective of community care policy since at least the 1960s. A Ministry of Health circular stated in 1962 that:

“Services for the elderly should be designed to help them remain in their own homes for as long as possible.” (1)

There is, however, a concealed implication in the policy. The implication is that the time may well come when it is not possible. The idea of care in one’s own home is based in a dichotomous model of care, in which people receive care either in their own homes or in some kind of institution. The effect has been to postpone relocation into residential care or purpose-built accommodation until the old person faces some kind of crisis, when it is difficult to adjust to changes in circumstances. For many old people, the effect is the reverse of promoting independence: they are forced into situations where they have no option but to become dependent. Half the people coming into residential care come from hospital, because they cannot return to their own homes; decisions to enter residential care are largely taken not by the old people themselves, but by professionals or carers.

There is a dilemma in the aim of promoting independence. Independence is generally taken to mean non-intervention and non-dependence; people are independent for as long as they do not depend on others for their care. People preserve independence, consequently, by refusing services until they can refuse them no more. There is something deeply wrong with this concept of independence, and it might be helpful to start using another, slightly less tainted word: the idea of autonomy. People act autonomously when three conditions are satisfied: they are able to make decisions for themselves, they are not constrained, and they have options to choose from.

We should not be looking, then, to keep people in their own homes for as long as possible, because that is the route to crisis. We need to be thinking, instead, about how people’s autonomy can be maintained to the greatest possible extent. One option is not to offer care in someone’s original home, but to think of more flexible and varied residential provision. Core and cluster units, or “very sheltered” housing, bring people close enough to services to make it feasible to deliver long-term continuing care without a further move. If old people are encouraged to relocate, not at the latest possible point, but at the earliest, they can settle, form relationships and communities, and have a reasonable chance of maintaining their situation without having to move on later. Moving as early as possible is the exact opposite of care in one’s own home for as long as possible. It is not right for everyone – no policy ever is – but it has a great deal to commend it. Moving early increases independence, broadens choice and minimises disruption of the most vulnerable. Moving late reduces independence, denies options and puts people at risk. This policy is long overdue for a rethink.

Note 1. 2/62, Development of Local authority health and welfare services.