Medicine and the marginalisedBMJ 1999; 319 doi: https://doi.org/10.1136/bmj.319.7225.1589 (Published 18 December 1999) Cite this as: BMJ 1999;319:1589
They deserve the best, not the poorest, care
And though I have the gift of prophecy, and understand all mysteries, and all knowledge; and though I have all faith, so that I could remove mountains, and have not charity, I am nothing.
Who, Christian or not, could disagree? The idea of paying special attention to “the poor and mean and lowly” is a central part of the Christmas story and of most religions. It is a belief that underpins medicine Yet it is a belief that is constantly forgotten. Medicine usually fails marginalised people.
It is more than a quarter of a century since Julian Tudor Hart's famous paper on “the inverse care law”—that those who need medical care the most are the least likely to get it.1 The law is seen in its most extreme form on a global scale: the highest rates of sickness and premature death are in the developing world, whereas medical care is concentrated in the developed world Evidence continues to accumulate that the law applies everywhere, and things are probably getting worse not better.2
Jonathan Mann, the Harvard professor who was killed in 1998 in the Swiss Air crash, introduced a new way of thinking about these issues by combining thoughts on public health and human rights.3 He would illustrate his thinking by arguing that when HIV is introduced into a society it will eventually be concentrated among those whose human rights are most neglected. It is found in the babies of women too poor to have their HIV infection diagnosed or treated, prostitutes whose clients refuse to wear condoms, and addicted prisoners who are denied access to clean needles and pure drugs.
One group whose human rights are regularly compromised are people with learning difficulties.4 Doctors in most specialties will encounter these patients, not least because they have higher rates of many conditions, including epilepsy, dementia, hepatitis, peptic ulcer, and dysphagia. The number of people with learning disabilities is increasing as their life expectancy improves, and most now live in the community. Yet we have growing evidence that they are receiving poorer treatment than the general population. Reports in the BMJ this year have shown how rates of cervical screening among women with learning disabilities are scandalously low. 4 5 Research among this community is sparse, but the suspicion is that studies of other treatments and preventive interventions might find the same. A Dutch teenage psychiatric patient with learning difficulties was kept in restraints for five weeks because suitable care could not be arranged, igniting a much needed debate on services for those with learning difficulties.6 Some of the failures may result from lack of training among doctors in managing patients with learning disabilities, but there may also be discrimination.
Most doctors also encounter addicted patients, but many general practitioners are unwilling to accept on to their lists people addicted to illegal drugs.7 These patients are likely to create many more difficulties than the average patient, but they also have many more medical problems. If a separate system of care has to be created for them it seems highly likely that it will fall to lower standards than the general system This is exactly the point made 20 years ago by the Royal College of Psychiatrists in arguing against a separate prison medical service.8 At long last that advice is being heeded by the authorities in England,9 but for years prisoners, particularly the large proportion with mental health problems, have suffered from poor health care. Indeed, many prisoners end up in prison primarily because of the failure of mental health services. And when prisoners are referred to the hospital service they may find themselves shackled to the bed, even in some cases while giving birth.10
There are other marginalised groups who have high rates of health problems and poor services. These include homeless people, refugees, and travellers.2 With all marginalised groups the poorer standard of care seems to stem from a combination of ignorance, fear, and prejudice plus a feeling that they should adapt to the services rather than the other way around. These same factors also seem to be at work in the case of very large groups—particularly elderly and mentally ill people—who are not marginal in numbers but who are marginalised in the services they receive. The “debate of the age” has focused attention on medicine's failures with elderly people,11 while many psychiatric hospitals run at over 100% capacity, and carers of the mentally ill struggle with wholly inadequate support.
Much attention is now being paid to Britain's poor results in patients with cancer and heart disease, the major killers. Politicians are feeling the heat over the poor performance, and the Secretary of State for Health is planning to make them priorities, sidelining the usual political concern with waiting lists. The problem in a severely constrained health service is that services to marginalised groups may become still worse. The current fashion for politics by focus group means that the problems of the majority, “comfortable Britain,” are given priority because the focus groups include few if any people from marginalised groups. The main interest that the majority have in marginalised people is keeping them out of their back yards.
So how to respond? Thankfully some people, often inspired by religious faith, are willing to devote themselves to caring for marginalised people There are others, perhaps marginal themselves in some way, who cannot find places in the more popular parts of medicineand who drift reluctantly into the care of marginalised groups. Unfortunately those who care for marginalised groups themselves become marginalised.
Improving care for marginalised groups will thus need much more than exhortation from the pulpit or a journal—because most people are unwilling to take on the extra difficulties of caring for these people when, far from bringing professional or monetary reward, it brings the reverse. Real change requires—as always—professional and political leadership, unceasing commitment from the top, a clear vision of what is needed, resources, and a strategic approach. Medicine may somehow need to rediscover its religious underpinning while operating in an increasingly secular world. Otherwise, it's hard to see that anything will be different in 10 years time.