Tag: 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.