Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Thursday, 21 February 2013

Capacity, care and the chemical cosh

Researchers at Queen's University Belfast have published a study in the Journal of the American Geriatrics Society which casts light on the use of antipsychotic medications for older people (Maguire, A.; Hughes, C.; Cardwell, C. & O'Reilly, D. (2013) 'Psychotropic Medications and the Transition Into Care: A National Data Linkage Study', Journal of the American Geriatrics Society 61(2) p 215-221.).

It has been known for some time that antipsychotic medications are used to excess upon people with dementia.  In 2009 Professor Sube Banerjee wrote a report for the Department of Health in which he reported that they brought no benefit to patients in 80% of cases, and estimated that:
...we are treating 180,000 people with dementia with antipsychotic medication across the country per year. Of these, up to 36,000 will derive some benefit from the treatment. In terms of negative effects that are directly attributable to the use of antipsychotic medication, use at this level equates to an additional 1,620 cerebrovascular adverse events, around half of which may be severe, and to an additional 1,800 deaths per year on top of those that would be expected in this frail population.
The study published this month is important because, for the first time, it has demonstrated that overprescribing of antipsychotic medications is not a problem for people with dementia per se, but for older people being admitted to residential care.  By auditing prescriptions for the over 65's in the UK, they were able to show that:
Psychotropic drug use was higher in care homes than the community; 20.3% of those in care homes were dispensed an antipsychotic in January 2009, com-pared with 1.1% of those in the community. People who entered care had higher use of psychotropic medications before entry than those who did not enter care, but this increased sharply in the month of admission and continued to rise. Antipsychotic drug dispensing increased from 8.2% before entry to 18.6% after entering care...
So the use of this non-beneficial, sometimes lethal, 'chemical cosh' is somehow linked to institutional care.

In Banerjee's report, he wrote that 'it appears that they are too often used as a first-line response to behavioural difficulty in dementia rather than as a considered second-line treatment when other non-pharmacological approaches have failed.'  The study published today is not conclusive proof that chemical coshes are used because care staff cannot cope with behavioural difficulties in dementia, so they reach for the pills.  However, it does raise important questions about why a person who was living in the community without need for such medication is suddenly prescribed it upon institutional admission.

Since Banerjee's report, there have been various efforts to reduce the use of these dangerous medications for people with dementia.  The Department of Health has a whole webpage filled with resources dedicated to helping commissioners to reduce inappropriate prescribing of antipsychotics.  The NHS Institute for Innovation and Improvement conducted an economic analysis, to make a business case for not using these drugs:
It is estimated that behavioural interventions cost £27.6 million more per year than antipsychotic drugs for the cohort of 133,713 individuals with dementia requiring antipsychotic drugs in England.  However, the additional investment is offset by nearly £70.4 million in health care savings due to reduced incidence of strokes and falls.  Specifically, behavioural interventions would avoid nearly 1,348 cases of stroke and 118 falls compared to antipsychotic drugs per year. Of these health care cost savings, £4.7 million were estimated to be realisable as they are due to medication costs. 
It's depressing that you need to make a business case at all, but this report tells us something quite important.  The cost of behavioural interventions is significantly higher than antipsychotic drugs; this will mostly be the costs of additional staff and additional staff training in residential care services.  However, the  projected savings of these behavioural interventions will mostly be felt by health, not social care, so whilst in a theoretical sense it saves money to provide adequate staffing in care rather than reaching for the bottle, the fact is the people who spend the money don't feel the benefit.  The costs of care will come from local authority budgets or the purses of older people themselves - how are we to persuade them to spend more on care services, so that the NHS can save money?

A report published in July 2012 found that there has been a 51.8 per cent reduction in the number of people with dementia receiving a prescription of  antipsychotic medication from 2008 to 2011 (it's not a headline, but between 2010-11 the figure began to increase again; I wonder how the cuts will impact upon this?).  That report also found that the number of people being diagnosed with dementia had increased in that period, and the percentage of people being prescribed these drugs within twelve months of diagnosis also fell.  The questions that bother me about this report are whether the prescription rates for those in institutional care fell during this period, and whether the increase in diagnoses of dementia reflected earlier diagnoses.  If that were the case, then we might expect the percentage of people with dementia diagnoses being prescribed these medications to fall, if people were only being prescribed them in more advanced stages of dementia.  In essence, it is possible that we are prescribing these drugs at the same rate for people with more advanced dementia, but this is masked by an increasing number of early diagnoses.

The NHS Institute and the Dementia Action Alliance published a 'call to action', saying:
We can each of us choose to believe that this is someone else’s responsibility, we can choose to continue to do things in the way we always have, we can choose simply to be outraged, but people with dementia who are prescribed antipsychotic medication will continue to suffer the intolerable condition and many more will join them. Or we can choose to join the call to action....
Former Minister for Social Care, Paul Burstow MP, has for a long time campaigned against the use of these drugs.  I don't want to knock Burstow's efforts, as they were well intended and it certainly seems possible (but is not conclusive) that rates of administration of these drugs in care settings has fallen over the last few years, but some attempts to reduce the inappropriate use of these drugs really seemed quite laughable.  They mostly seemed to consist of blustering ill considered threats, and gentle persuasion.  Utterly bizarrely in November 2011, Burstow insinuated that GPs could face jail if they prescribed these drugs inappropriately, apparently 'under the Mental Capacity Act'.  He also described use of these drugs as a 'deprivation of liberty'.  Now, I do not deny for one second that use of these drugs can be abusive, and so in theory could constitute an offence of ill-treatment or neglect under the Mental Capacity Act, but the reality is that no criminal court is likely to convict a GP for doing this.  If this really is a crime, where are the convictions given that Banerjee estimated over a hundred thousand people were inappropriately prescribed these drugs?  Likewise, I'd like to think that use of these drugs would be a huge red flag that a person is deprived of their liberty, but the fact is that there has never been a neat relationship between this and the use of the deprivation of liberty safeguards.  It is depressing that the Minister for Social Care seemed so ignorant of the Act that he could suggest this, unless he was hoping that GP's might be even more ignorant and would be cowed into submission by his claims.  Burstow also threatened to require GPs to seek the permission of Primary Care Trusts before prescribing these drugs, but that also came to nought (then the following year, his government abolished PCTs and replaced them with groups run by GPs).

The trouble is, as things stand it is extremely difficult to see how else to proceed to reduce the use of these drugs, except by persuasion and crossing our fingers.  GPs appear to be prescribing these drugs under pressure from residential care providers - how else to explain the link between a person being admitted into residential care and being prescribed them?  The GPs, in fairness, probably see a distressed person with dementia who is not being properly supported, perhaps they are endangering themselves or others through their behaviour, and - not being able to do anything about the staffing of the care home - they reach for the prescription pad.  Meanwhile we know that care homes are operating under extremely severe financial pressures, and this will impact on the quality of the staff they can recruit, staffing ratios, staff training and staff retention.  They are unlikely to be able to use 'challenging behaviours' as a means to renegotiate block contracts with local authorities to cover increased staffing, and it is likely that payment from private individuals would be under the control of attorneys or deputies who are likely to have an eye to conserving available resources so they last a person's lifetime (or, more cynically, preserve inheritances).  The regulator, the Care Quality Commission, is not in the business of second guessing GP's prescriptions when they are inspecting care homes.  So the chemical cosh suits everybody, except the bits of the NHS which provide treatment after a fall, and the person themselves.

Where are the levers to act?  The reality is that most of these prescriptions will be made for people who do not understand the nature of the treatment they are being administered.  That is to say, they lack the capacity to consent to treatment.  This means that GPs only have a defence for administering these drugs under the Mental Capacity Act 2005 if they are in a person's best interests.  But if, as Banerjee estimated, they do not benefit a person in 80% of cases, they can have lethal side effects and they act as a form of chemical restraint, it is highly doubtful that they really are in a person's 'best interests'.  Furthermore, how often are GPs involving the person themselves and their families in these decisions?  Where there is no family, are they recognising that - as Branton, Brindle and Zigmond have argued - these are serious medical treatments requiring a referral to an Independent Mental Capacity Advocate?  Somehow, I suspect not - although please do correct me if you think GPs are reliably making IMCA referrals for this purpose.

To me, this reflects one of the fundamental weaknesses in the Mental Capacity Act.  Way back when the making Decisions Alliance were campaigning for the Mental Capacity Bill, they observed of what has now become the 'general defence':
Without the involvement of an advocate, and with no requirement for capacity to be independently assessed, the General Authority gives statutory recognition to a ‘closed relationship’ that will not be monitored by any third party, and may therefore be open to abuse. The General Authority was initially presented to stakeholders as a mechanism by which ‘day to day’ decisions could be taken by carers, without the  need to resort to formal processes, so minimising bureaucracy. Yet in the draft Bill, no  limitation is placed on the types of decision that can be taken under the General Authority, other than that in all the circumstances it is reasonable. 
Nobody is routinely monitoring these prescriptions.  Nobody is routinely questioning whether a person has capacity to make decisions about their use, whether they are really in a person's best interests.  This stands in contrast with the use of second opinions for non-consensual treatment under the Mental Health Act (where, additionally, prescriptions for such powerful antipsychotic drugs will be made by specialised mental health practitioners not by GPs).  It is possible that their use might be flagged up by a mental health or best interests assessor under the deprivation of liberty safeguards (I'd like to think they are routinely probing these issues) - but they have no powers over GPs.  There is no evidence from the published judgments of the Court of Protection that people are using the Act to challenge their use in court.  The truth is that with the Mental Capacity Act we confirmed the authority of medical practitioners, amongst others, to make massively important decisions affecting the lives of people with mental disabilities, and then we crossed our fingers and hoped that they would be good ones.  As this study and the Banerjee report of 2009 showed, we cannot afford to be so complacent.


  1. Sadly, this does not apply only to elderly people with dementia. This also applies to young people with learning difficulties who are labeled as having mental health issues.

    We must start to educate ourselves regarding the harm that it is doing rather than believing that anti psychotics work in the first place......
    Finally we have the pathway to engage and discuss and begin to talk openly about this very important subject and maybe to look at the alternatives.

    Pharmaceutical Companies should not be above the Law.....They must be held accountable......

    I heard a saying once, that when the American's start coughing the Brit's cough too.... Unfortunately it takes us the Brit's a little bit longer....

  2. A very depressing read and something for all to fear as they grow old in a time when many more will not have family or other support, living alone as they grow old and develop dementing illnesses.

    I suspect that older people in the community are 'more hidden' with difficult behaviours until either a family member or neighbour etc raises an alert that something must be done to 'protect' the person or others. This probably starts the road of medicating behaviours.

    Families who care for someone with dementia in the community will vary as to their willingness to allow administration of anti-psychotic drugs, depending on their ability to cope with the stress of caring with good strategies to avoid / deflect challenging situations. Those who have placed someone who cannot be cared for at home by them any more, due to their own health issues, might be more willing to intervene (if holding a relevant LPA) to prevent the use of anti-psychotic drugs e.g. by coming in frequently to assist in the care / support of their loved one.

    But it is a lottery and one that will be lost by those who do not have someone forcefully advocating on behalf of the vulnerable person seemingly lacking capacity. The MCA has shown itself to be a powerful tool for the authorities to control the vulnerable but lacks teeth in the true protection of those who are controlled by 'financial' incentives of the said same authorities.

    Politicians and locally elected councillors are rarely great or deep thinkers with the ability to dig and question what they themselves set in motion by their policies and laws. Do not expect anything to improve in the UK.

  3. Referring to my own experience, my elderly mother was getting a bit forgetful but could always engage in a lively conversation and loved to reflect on her life and tell her stories. After she was transferred to a care home which made her upset and angry she was often found asleep in her chair with the other inmates in the same condition. Sometimes I would visit and she would be in bed, in the afternoon, confused about what day it was or whether or not she had had her breakfast. I have no doubt that she was being medicated but this was never discussed with any family members because I was her only visitor and nobody talked to me about it.

    So an elderly person can be given a chemical cosh just because they protest at their incarceration in a care home which then becomes like a double deprivation of liberty. I do not have the right words at the moment to describe how disgusted I am with a system that would do this to human beings.

    This is an excellent article which raises very serious issues about the quality of life provided for vulnerable adults in care homes.