Worried Sick is a new report from the Scottish Association for Mental Health. It reflects concerns about the way that people with mental health problems are left to negotiate the reefs of the benefit system without adequate support; in six cases SAMH workers had to help people attempting suicide because of what was happening.
The report’s sample focused on the poorest areas. That makes it easier to find people in trouble, but it can be misleading. Mental health problems, and benefit problems, don’t just affect the poorest people, or people who live ‘somewhere else’; they can hit anyone, anywhere. It could happen to you.
The winter holiday has produced the usual slew of concerns about Accident and Emergency provision. There is too much demand; the numbers of people using the service are up again; waiting times are excessive; there are staff shortages. Something like this happens every year.
There are two different kinds of problem here. One is a reflection on the continuing problems of general practice. What’s supposed to happen in principle is that everyone is supposed to have a general practitioner, and when they’re ill they will receive treatment from the GP first. This doesn’t work as it should, because there are still large numbers of people (especially in London) who are not registered with a general practice, and because the reform of out of hours services has generated problems in its own right. The problems are not confined to A&E. A study of the demands made by unregistered patients in the Journal of Public Health found that the highest number of outpatient attendances were in genitourinary medicine, trauma and orthopaedics, while the highest costs were associated with trauma and orthopaedics, forensic psychiatry, mental health and general medicine. There is also some evidence that most of the people who go to A&E ‘inappropriately’ are people who are already registered with their GP, and who use their GP repeatedly – they have twice as many appointments, and make ten times as many out-of-hours phone calls as others. (It’s difficult to be certain what is an ‘appropriate’ call, because so much depends on what other services are available: an article in Family Practice reports estimates of inappropriateness that varied from 6% to 80%.)
There is however a further problem, and that problem lies in A&E itself. The system was mainly developed in the 1960s as part of the general philosophy that a medical service had to have comprehensive provision for when the need arose: a centralist dream, the same kind of rationale which insisted that all children had to be born in hospital. So we built a system that could cover general practice, casualty, unscheduled care and major trauma from a single service. It’s exhausting to operate. Because it has simultaneously to be decentralised and always open, and to offer highly specialised trauma care, we can’t train or maintain enough staff to provide the cover; and it guarantees that whenever there’s an outbreak of winter vomiting, sufferers will come together in one place to spread the disease. There are alternatives: to have a domiciliary response to minor injuries, community based hospitals for general practice and urgent attention, casualty units for accidents and major trauma centres with specialised resources for the most serious cases. Following the Kerr report, which argued for a schematic approach to unscheduled care, that’s the pattern developing over much of Scotland.
Neither of these problems would be addressed by the silly proposal to charge people for going to A&E services. The main people to be put off would be those who are already poorest and least well served.
I’ve referred earlier this week to the work of Ioannidis, who argues that most published medical statistics are wrong. The British Medical Journal regularly uses its Xmas issue to publish some disconcerting, off-beat papers. In a previous issue, they produced the findings of a randomised control trial which showed an apparently impossible result: praying for people whose outcomes were already decided several years ago seemed to work. The message: don’t trust randomised control trials, because they’re randomised. This year, an article, “Like a virgin”, identifies 45 women in a sample of nearly 5,500 who claim to have had a virgin birth. The message: don’t believe everything people tell you in surveys. If only medical journals applied the same rigour to some of their ‘serious’ results.
In the Scottish Parliament, Labour leader Johann Lamont has raised the case of a cancer patient who is “considering moving to England to get free access to drugs she cannot be prescribed on the NHS in Scotland.” Lamont is critical of money being used to pay for paracetamol while this drug is not prescribed.
Cetuximab is a drug prescribed in certain cases of advanced cancer, principally colo-rectal or head and neck cancer; in both circumstances it’s used for a relatively short period in combination with other therapies. It’s approved for use in Scotland and England and Wales on similar terms, but the terms are highly specific. Three issues are worth noting. One is that while the treatment does lead to an improvement in life expectancy, the improvement is very small – two to four months, assuming best supportive care. The second is that the drug is dangerous: “Cetuximab has a non-trivial safety profile and data are compatible with an increased risk of death in patients administered cetuximab as add-on to chemotherapy.” (Scottish Medicines Consortium) The third issue, as often happens, is that the drug is also very costly – the Health Technology Assessment suggests that the manufacturers have underestimated both the duration of treatment and the cost of supportive care.
It’s not possible to tell what the basis is for the decision about the particular patient identified in the Scotsman, and I’m not going to try. It’s not difficult to understand, however, that decisions about prescription have to be made in a specific context, for a specific person, and that different decision-making bodies may reasonably arrive at different conclusions.
Paracetamol, by contrast, is a largely beneficial drug, prescribed in well over two million cases in Scotland every year. The idea that Scotland should stop prescribing it in order to facilitate paying for expensive drugs with very limited benefits doesn’t look like sound policy.
Although the situations considered in the Francis report are shocking, the situation they describe is all too familiar. The scandalous ill-treatment of patients was a recurring problem of long-stay institutions – reflected for example in Sans Everything (1967) and a string of scandals in mental institutions, detailed at length in J Martin, Hospitals in Trouble (1984), a book cited in this inquiry report. Nearly thirty five years ago, as a student, I was given an advance copy of the Normansfield report by Brian Abel-Smith; it described how patients were restricted and neglected, and the upper echelons of NHS management did nothing about it. David Ennals explained, in Parliament: “… the report makes clear that there were many people who knew just what the position was. Some of them were in positions of authority with power to act but they failed.” In other words, we have been here before. The main difference is that this time it’s in acute care.
Unfortunately, the Francis report does not point to the way out of the problems. There are some hard-hitting passages – given the findings, there had to be – but there’s an awful lot of words in between. At nearly 1800 pages, the report is rather badly written – indiscriminate, repetitive, with some slushy, mystical twaddle about leadership (the stuff about it being a quality of the ‘spirit’ is in there twice) and an 125-page “Executive Summary” (someone should have taken the learned chairman into a corner and explained what that phrase is supposed to mean). The review of evidence in volume 1 is generally good; Volume 2 spends several hundred pages reviewing what regulatory and supervisory agencies did not do, and is interminable; the review of general issues in volume 3 is long, prescriptive and often preachy. The sheer number of words guarantees however that it won’t be read.
The stuff on leadership presents the most obvious problem. This report uses the word more than 800 times, referring to leadership haphazardly whenever it wants to think about the position of people in charge, senior management, ward management, roles in professional settings, personal qualities, motivation, or relationships with juniors. The poisonous cult of leadership, and the assumption that people in charge should energetically push others to share their values and aims, is part of what’s created this mess in the first place. What the report is really describing is systemic failure, and systemic failure cannot be responded to through on an individualistic basis without gaps being left.
Reform Scotland has published a pamphlet arguing that since GP practices are insufficiently sensitive to patients’ needs, the answer must be to promote competition between providers. That doesn’t follow. When markets are based on ‘choice’, the choices that are made are not just the choices of consumers; they are also the choices of providers. Competition works because providers refine and select what they do. They choose who their customers are. They choose their location. Making the right choices cut costs; that is why competitive markets tend to be efficient (and why public services aims for ‘cost-effectiveness’ instead of efficiency – the aims are very different). The selective decisions of providers, within the current system, are precisely the reasons why patients do not get what they need. Which practices are going to cover people in isolated rural locations? Who is going to provide services to drug users, who use GP services at ten times the rate of other people? Who is going to provide services to very elderly people, who cost practices seven times the resource of other patients? Competition is not the way to a universal service; it is the opposite of what is called for.
The press reports, again, that patients are being denied life-enhancing drugs to save money. In this case, the issue centres partly from the draft guidance prepared by NICE on Abiraterone, and partly on the impression in Scotland that the drug in question may be partly responsible for the unexpectedly long survival of a convicted murderer.
NICE gets a terrible press, but the work they do is exemplary. The consideration given by the committee is, as ever, consistently careful, thorough and balanced. Their brief was to review
- Overall survival
- Progression-free survival
- Response rate
- Prostate specific antigen (PSA) response
- Adverse effects of treatment, and
- Health-related quality of life.
There is a case for Abiteraterone. It does extend survival by about four months – roughly a third more than without the drug – and it seems to have fewer side effects than the existing drugs. However, the benefits are still limited, and the drug is hugely expensive.
This specific example seems to fall into a category discussed in a debate in the British Medical Journal in 2009 (31st January). Adrian Towse, the director of the Office of Health Economics, argued that the public were generally willing to support payments that were double what NICE was allowing for. The NICE thresholds were typically a cost of £20-30,000 for each QALY (a year of valued life), a figure that has been raised for end of life treatments; the public would support £30-70,000. Against that, James Raftery argued that the thresholds should be lower, because they force health trusts to take resources away from other, more effective treatments. The cost of Abiraterone falls in the region of £53,800 to £63,200 for each QALY.
There is beyond that a common problem: the evidence in this case is almost entirely supplied by the drug’s manufacturer. Manufacturers have only a limited window during which they can market a drug before patents expire; spending time to run all the tests, and in particular to identify the groups best able to benefit, is not always consistent with their financial interests. It is not clear whether Abiraterone does extend survival more than all the alternatives, because the manufacturer has not yet made all the necessary comparisons. If the gaps could be closed, the case for approving the drug would be stronger.
On 8th February I suggested that some groups might reasonably be exempted from the process of reassessment for ESA, and mentioned in particular “young people with severe disabilities from early ages or people with defined conditions like cancer”. The recent statistical release tells us that these groups have a quite different profile from most other claimants. As things currently stand 12% of all claimants are being placed in the “support group”, those who are not expected to work. In the case of “neoplasms”, or cancer, that rises to 67.7% of assessed claims; in the case of “congenital” or “chromosomal” conditions, it is 66.7%.
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.
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.