Reassessing claims for ESA

The reports of delays in access to Employment and Support Allowance are unsurprising. The finger of blame has been pointed at Atos Healthcare. Atos has been the subject of a barrage of criticism during the last couple of years; their processes were described by the Harrington report as “mechanistic” and “impersonal”; many of the decisions made about fitness to work are wrong and 40% of appeals have been successful. Atos has issued a statement attributing the delays to the longer, more sensitive assessments introduced since Harrington.

There is however a more general issue about the capacity of the administration to deal with mass reassessment. Governments have not just undertaken in recent years to reassess all the former claimants of incapacity benefit; they also propose to introduce equivalent tests for the Personal Independence Payment, the reformed Disability Living Allowance. As people with disabilities are displaced from the labour market, and as the government requires further categories to be ready for work, including lone parents and those who are bereaved, the demands on the system of reassessment will increase. Current calculations on throughput rely heavily on people not turning up for the assessment.

There are some practical ways of relieving the burden of administration. One is to exempt more groups – such young people with severe disabilities from early ages or people with defined conditions like cancer. Another might be to offer compensation to some people to transfer to JSA voluntarily. A third might be to license a range of independent practitioners to certify the assessment. The procedure needs to be faster as well as fairer.

Stigmatising disability

The stigmatisation of claimants with disabilities is not a new phenomenon – people with disabilities have always prompted a combination of apprehension, mistrust and vilification. Precisely because it is deep-rooted in society, it can be dangerous. Governments which are critical of vulnerable groups are liable to legitimise the process of social rejection and exclusion; in the worst cases, they can exacerbate the process. That is behind the concern expressed by certain charities in a recent Guardian report.

Social security benefits for people with disabilities are not provided for a single purpose. They are provided for many reasons – among them, need, low income, social protection, compensation, earnings replacement, social inclusion and rehabilitation. Part of the problem with “othering” disability – and indeed, part of the problem with treating disability as an issue in identity politics – is that so many different issues are folded up together. Anyone can become disabled; it can happen suddenly as well as gradually. A benefits system needs to protect people from the things that might happen to them, and a system which excludes disability fails in several of its primary purposes.

Sick note Britain?

A report by Carol Black and David Frost makes proposals that are supposed radically to reduce the flow of people moving on to Employment and Support Allowance. The argument that this can be done is built on the belief that the initial response to illness makes it more likely that people will adjust to long term sickness by claiming benefits. However, the most substantial reduction that is foreseen in the report is in the numbers of people who move directly to long-term benefits without going to employment in between. This group includes people who would formerly have claimed Severe Disablement Allowance.

Despite the reports about “sick note” Britain, benefits are not in general issued with sick notes – or “fitness for work notes” as we must now learn to call them. GPs didn’t, in general, get to sign people onto Incapacity Benefit, and they don’t sign people onto Employment and Support Allowance. However, there are some exceptions. If a person is not entitled to Statutory Sick Pay, typically because their employment has been terminated, they will be put onto ESA directly. If they have certain illnesses, principally terminal illness and life-theatening conditions, there may be no requirement to undergo a Work Capability Assessment. Those exceptions will be maintained. The main proposal in the report is that such claimants should move directly to the WCA. It is not immediately clear how this procedure is going to deliver a substantial cut in the number of successful claims.

Reforming health services in Scotland: A&E in Monklands and Ayr

The NHS in Scotland has been blighted by creeping centralisation. Hospital services have been progressively been sucked into the large, university-based hospitals in the major cities. The result has been growing problems with accessibility and equity, and a sense of alienation from the population that these hospitals serve. People do not simply want the best medical care possible – especially not if if means they have to travel away from their communities and their families in order to receive it. There are now many parts of Scotland where there is no cover on evenings and weekends, and over an hour’s travelling is needed to get help. Health care is all about social protection, and the first, basic rule is to make sure that people are covered when they need it. The resistance to the closure of Accident and Emergency (A&E) facilities in Monklands and Ayr is symptomatic of this. The understandable fear that people have is that the services will not be there when they need them, and they will have to travel long distances to get essential cover. One of the first actions of the new SNP executive has been to refer the issue back to the health boards for reconsideration.

The reform of A&E is not, however, just another example of centralisation. On the contrary, the development of A&E is itself an example of over-centralisation – formed in the belief that a unit can only function adequately if it has a critical mass, and all the bells and whistles that might be needed. The current arrangements don’t work – it’s not very long since A&E in Lanarkshire was virtually overwhelmed by the number of people reporting with a respiratory virus.

The Kerr report, Building a health service fit for the future,  argues that the problems of A&E can be dealt with by more decentralised, local services. The report makes a crucial distinction between Casualty and Emergency services. Kerr proposes a network of casualty units, each with the capacity to deal with lesser injuries and to stabilise life-threatening conditions. Kerr suggested that “as a rule of thumb, each current hospital offering A&E services should be able to sustain services for urgent care.” Emergency services, by contrast, will be more specialised, typically serving about a quarter of those who currently come into A&E.

The NHS boards in Lanarkshire and Ayrshire and Arran proposed, in line with the Kerr report, to replace A&E with a split between Casualty and Emergency units. In Lanarkshire, the plan would have increased the number of units dealing with casualities from three to five, with new units in Cumbernauld and Lanark. These 5 units were to cover 70%-80% of the load currently done in three places. Each, then, wouldl have only half the load of current A&E provision. Two further Emergency units, at Hairmyres and Wishaw, were to act as specialised backup. A&E in Monklands was to be downgraded – not closed – as part of a process which would have redistributed staff and facilities across seven units in five locations. The same pattern was proposed by NHS Ayrshire and Arran. Instead of two A&E departments there were to be five causalty departments and one emergency unit. A&E in Ayr would therefore be downgraded.

The purpose of these plans was to make services more local, less centralised, more accessible and much less overburdened. That is what people are now opposing. An attempt to decentralise is at risk of unravelling because of a demand to keep things as they are.

Rationing Herceptin

The announcement that Herceptin (the brand name of trastuzumab) has been approved for early stage breast cancer has also been accompanied by fears that it will cost the NHS about £100 million, on the assumption that it will be routinely prescribed in cases where women have early stage breast cancer. On a recent court case, a women took her health authority to court for refusing to prescribe the drug prior to its approval by NICE, the National Institute for Clinical Excellence. She was convinced that not receiving the drug was tantamount to a death sentence, and she made several emotive appeals to the press. The Secretary of State for Health intervene to direct that she should receive the drug.

This has been seen as an argument about rationing, finance and costs. I’m not convinced that it is about rationing at all. The first issue it raises concerns the process of approval. In some countries, doctors are able to prescribe drugs fairly freely. In France, prescriptions or licensed drugs are permitted unless the drug has been entered on a list of “références medicales opposables”. In the UK, the opposite is true; doctors are unable to prescribe drugs on the NHS until they have been approved for use. The rationale for limiting prescriptions reflects fears that the information available to doctors is partial, and unduly influenced by the pharmaceutical companies.

In the case of Herceptin, there have been some disturbingly misleading reports – including one in the New England Journal of Medicine, which really ought to know better. The article examining the use of the drug (1) suggested that using it in the early stages had reduced the recurrence of breast cancer by “approximately 50%”, and the journal editorial took that on trust. The numbers in the article are not clearly stated, and they seem to be different in different tables, but nearly 1700 women received trastuzumab for a year, and a roughly equal number did not. 127 women receiving the drug had a recurrence of their cancer, and 220 in the other group had recurring cancer – an improvement, on the face of the matter, for 42% of the treatment group, not “approximately 50%”. Crudely put, 93 people, or less than one person in 18, seemed to benefit. What also needs to be mentioned is that 84 patients receiving the medication were taken off it or withdrew because of ill effects, and that 29 people suffered symptomatic congestive heart failure. What we seem to have, then, is a drug which is potentially beneficial for a few people, potentially harmful for a few others, and makes little difference to most. This kind of profile is not particularly exceptional.

The key problem for the NHS rests in the finding that some people are significantly worse off as a result of receiving the drug. When the NHS approves a drug, it doesn’t just go to one person; it goes to hundreds, and sometimes thousands. What risk is acceptable to improve the circumstances of some people, at the cost of danger to others? This is not a simple question of mathematics, and there is no numerical answer. The moral responsibility of the NHS is to do as much as it can to ensure that the benefits go to the people who need it, and that the dangers for others are minimized. There are more people who benefit that who suffer, which is encouraging, but not good enough. The normal procedure would be to use the results of successive tests gradually to refine the definition of the potential recipient group, so that it is used most appropriately for people who stand to benefit, and avoided for those who are most at risk. That is what the procedures for testing and trial are supposed to do; and that is what the political intervention has stopped. The first duty of any medical service lies in he principle primum non nocere, “first do no harm”. This, not the money, is what is at risk.

Note 1. M Piccart-Gebhart et al, Trastuzumab after adjuvant chemotherapy in HER2- Positive Breast Cancer, new England Journal of Medicine 2005 353:1659-1672

Obesity and sport

The problem of obesity is seen largely as a problem of nutrition and exercise. (There may be other contributory causes, such as sleep deprivation or the controlled temperature in heating systems, but this is still a reasonable generalisation.) Whenever exercise is mentioned, however, it is likely to be transmuted into “sport” in general, and competitive sports in particular. In several cases, absurdly, this has even been cited in support of Britain’s Olympic aspirations, as if sitting watching the Olympics with a pack of lager cans was going to inspire our transformation into leaner, fitter citizens. The sports lobby has kidnapped the idea of exercise, which is being held prisoner in a suburban room somewhere while an impostor takes its place. “Sport” is not the same thing as “exercise”, and even if sports are a way of exercising, they are not usually the best way.

An active lifestyle should mean that people are active across a wide range of ages, personal and social circumstances. Most people who have active lives do so through a variety of physical activities. The Scottish Health Survey classifies exercise for children in four categories – sport and exercise, walking, active play, and gardening and housework. Exercise for adults is mainly classified as home activity (including gardening, housework and DIY), work activity, and sport and exercise.  In relation to all categories, “sports and exercise” is at best a contributory factor – not the main one.

Within the category of “sport and exercise”, the role of “sport” itself is limited. Exercise includes walking and non-sporting activity such as dancing. “Sport” is fairly generally defined, including e.,g. swimming and jogging. Competitive sport and games are a residual part of exercise within the category of “sport”, and a tiny part of exercise overall. Engagement in sport is highest among young males; it is much less important for females, and it declines rapidly in importance with age, Team games are largely beside the point. If we want a fit, active lifestyle, encouraging walking and gardening are much more relevant than getting people to play football or rugby. Whether or not schools need a football pitch, they do need a garden more.

If it were just a question of not recognising what most exercise is like, there would be a case for doing sport as well as exercise. But that’s not the only issue. The culture of sport in schools, and particularly of team games, is profoundly alienating. Most schools in Scotland suffer from the dominance of football in the playground, where a few more competent boys participate, and the rest of the children are relegated to the corners of the open space. The obsession with competitive games leads to people avoiding physical activity. Sport, then, is part of the problem rather than part of the solution.

 

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.

Genetic arguments and social policy

This is drawn from arguments posted on the Radical Statistics mailing list.

Genes are not a blueprint for the way we live. Biologists distinguish between genotype – the underlying pattern – and phenotype, the observable outcomes stemming from the interaction of genes, environment and the combined process of development. The argument has been made that environmental factors can make genes more important. For example, myopia, a condition rooted in genetic makeup, has been exacerbated by the development of reading. Variation in height, which is clearly governed by genotype, is nevertheless largely produced by environmental factors (which is why height has increased in succeeding modern generations). To illustrate the point, we know that two centuries ago, even if they were drawn from the same genetic pool, people were much smaller and lighter than we are now. One French study records that 79% of male recruits in 1792-9 were below 1.5 metres tall. The difference between that range and the range of heights in contemporary society is large enough to move people with a similar genetic endowment from a relatively low position to a relatively high one, depending on the developmental environment (primarily, in the case of height, on nutrition). A similar comment can be made about obesity. Estimates for the heritability of obesity vary between 40% and 70%.  That does not mean it is genetically caused; it means only that it runs in families.  Anyone who imagines that recent increases in obesity are due to changes in genetics isn’t living in the real world.

Despite nearly 150 years of trying, no-one has produced any good evidence that genes affect developed social behaviour in humans. With about 42,000 genes, it is easy to find statistical associations – at the conventional level where p<.05, there will probably be 2100 genes associated with any given character trait – but that does not demonstrate any causal link. Beyond that, however, most studies making claims about genetic origins of behaviour do not even try to show that there is a general association between the gene and the behaviour. They have simply relied on the occurrence of behaviour in specific families (1), and families have shared environments as well as shared genes. To the best of my knowledge, no study has ever shown that any social competence, personality trait or pattern of behaviour, of any kind, is shared by people with a common genotype or combination of genes while it is not present in others without that genotype. This is the minimum data that would be required to show that genes determine such issues.

Many studies rely, instead, on twin studies, in the belief that the similarity between identical twins must be genetic. This has three obvious problems. Firstly, any similarities within families may well reflect similar environmental factors. Second, identical twins generally have social environments which are very similar, and certainly more similar than fraternal twins. That’s why past studies tried to concentrate on identical twins reared apart – the problem being that (a) not enough twins are reared apart to make for a valid study, and (b) that even when twins are reared apart, social services agencies try to match their environments to the greatest possible extent. Third, identical twins are only relevant if one begins from the proposition that their genetic endowment is crucial. In other words, the studies assume the phenomenon they set out to prove.

The argument is not just bad science, It was used at the end of the 19th Century to justify the isolation of “degenerates” from the rest of the community. It was the basis for eugenics. It was closely associated with fascism, because it is an argument that was made by fascists for political reasons and offered in justification of the extermination of inferior humans. (2) The argument is sinister, and it deserves to be treated with deep scepticism.

Update, 24th November 2012. New Scientist reports this week about Mendelian randomisation, and that serves as a reminder to me that this criticism is beginning to be dated. The genetic linkage studies that were just being developed when I wrote this (e.g. Lancet, 2005 Sep 17-23;366(9490):1036-44) have started to bear fruit. A new epidemiology, described in Palmer et al’s Introduction to genetic epidemiology, has moved away from the old fallacy that behaviour is simply determined by genes; it begins, instead, with the proposition that different environments affect people with different genetic endowments differently. That makes it possible to distinguish the circumstances of people with certain genetic patterns from others – which is just what I was complaining here that studies hadn’t done to date.

Further update, 21st June 2020  The kind of work I was discussing here has, in all seriousness,  just saved my life.  A condition that would have been considered terminal five years ago has been distinctly identified through genomics and is now known to respond to a specific remedy.  This is a real and major development – and, as far as anyone can tell, heredity has nothing to do with it.

Note 1. S Jones, 1993, The language of the genes, London: Flamingo, ch 12.
Note 2. See R Lerner, Final solutions, Pennsylvania State University Press 1992.