Reaching out: engaging with medical neglect before the NHS
By Kim Price
The Local Government Board’s inquiries into medical neglect under the New Poor Law, from the late Victorian to modern period, are rich and unusual documents. Each inquiry contains hundreds (sometimes thousands) of pages, with notes, clippings, maps, affidavits, statements and correspondence. Until the 1880s, patients under the New Poor Law were legally defined as paupers. Therefore their voices – in statements and affidavits – are a rare and invaluable entry point into the lives of England’s poorest families and the medical care that the state provided to them at times of need.
Notwithstanding the vast historiography of the Poor Laws and medical practice in 19th-century England, there is a dearth of history that can provide a context for incidences of neglect. Surprisingly, there is practically no literature that focuses on a pre-National Health Service era of neglect and medical law. As a result, much of my research during my recently completed Wellcome Trust Postdoctoral Fellowship has hinged on explaining what medical negligence under the New Poor Law meant at a fundamental and theoretical level.
Recurring gaps in the literature indicated that, outside North America, the history of medical negligence was itself neglected internationally. Yet this impression could have been created by the lack of relevant interdisciplinary research and, in turn, disjointedness between law, ethics, medicine and history. It was clear that a point had been reached when it would be beneficial to seek an outlet for my research that would attract the interest of specialists beyond the discipline of history. This process of reaching out was public engagement writ large.
But when is it right to extend research beyond the esoteric to public engagement or involvement in contemporary policy debate? At what point in your career are you ‘validated’ – at what point does your research turn from an explorative study into a conclusive, fresh, contribution? And how does an enthusiastic history researcher tell the difference between specialist and public interest? Is there a difference? There may be no definitive answers to such questions. As historians we can sometimes be so close to our research that our ability to judge its relevance to contemporary policy or public interest is affected. Public engagement can therefore feel a bit like a leap into the dark and a high-risk strategy.
Yet the timing seemed right to reach out to other disciplines and non-academics. Although this was an intimidating prospect, the Lancet appeared to be the ideal forum for both my subject and my objectives. The journal is read by, among others, medical professionals and practitioners in medical law. It has a very high impact factor and an impressive public and online presence (articles perform well in online citations and searches). It has long contained a dedicated section for medical humanities and regularly publishes articles on contemporary issues in UK policy and patients’ rights that are relevant to my research.
With some trepidation, I submitted my manuscript to the ‘Art of Medicine’ section. After several months, and a few edits along the way, it was published as ‘Towards a history of medical negligence’ (16 January 2010). It can sometimes take years for an academic article to get accepted, reach publication and catch a wave of enthusiasm, but the short-term response and experience from this short essay (fewer than 2000 words) has been very positive. The Lancet is of course a highly respected medical journal of international standing, so I perhaps should not have been surprised when it was soon cited by the editor of the Irish Medical Journal and has since been referenced in publications about medical sociology, politics and law. Given my aims, this has been fundamental in positioning my research beyond the regular ‘history’ ambit. Moreover, open-access publishing means that more and more articles can now be easily read by anyone via the internet. In return, I have been contacted by experts in medicine, ethics and law, and this has opened up dialogue, collaboration and interdisciplinary research.
A year later, I was commissioned to write a second article: ‘The crusade against out-relief: a “nudge” from history’ (19 March 2011). In hindsight, a less esoteric title could have been more effective at generating wider interest. In the age of Google searches, titles have taken on new importance. A stronger byline that contained some reference to the term ‘disability’, central to the text, would have perhaps marketed the research better for a wider audience.
This article was inspired by adverse financial trends in welfare and health policy during two double-dip recessions of the late Victorian period. Unquestionably, that backdrop had a negative impact on the standard of care provided to vulnerable and dependent patients whom we would now regard as disabled. There were thus key historical parallels for policy makers now.
The ‘crusade’ was a policy mood swing between the 1870s and 1890s, seeking to withdraw non-institutional welfare assistance, known as out-relief. Many regions cut crucial benefits to the poorest and most vulnerable. Workhouses provided the lion’s share of the state’s institutional medical provision, and, during the 1870s, many were swamped with paupers who had previously been in domiciliary care. Workhouse medical officers and nurses were particularly unprepared for the increased number of dependent paupers (aged and disabled). To make matters worse, medical officers were paid low salaries by the state while (supposedly) earning a higher income from their private practice. Their time was thus divided between Poor Law work and private practice.
Unsurprisingly, Victorian doctors prioritised their private obligations – and the income this generated – over the care of pauper patients. In turn, there were tragic cases of starvation and neglect of the most vulnerable patient groups, such as those with learning disorders or disabilities. Instead of addressing latent failures in the system, though, the Local Government Board sought to blame individual doctors for cases of medical neglect.
There are therefore some broad similarities between what happened under the New Poor Law and what could now be unfolding under the recent NHS cutbacks. The UK government is bringing in policies that will cut benefits to the disabled and aged at the same time as cutting spending on the NHS and other care providers. It is also seeking a greater proportion of privately funded care services.
This comes against a backdrop of a rising number of high-profile incidents of negligence involving patients with mental health problems, disabilities and learning disorders. Mencap published its Death by Indifference report in 2007, claiming that there was “institutional discrimination within the NHS against people with a learning disability leading to neglect”. A year later, the Healthcare Commission similarly condemned the NHS’s care of people with disabilities. Since then, there have been further reports of neglected patients in the press. Lurid cover stories have been thrust into the public eye, such as ‘Starved to death in an NHS hospital: damning inquiry highlights case of patient left without food for 26 days’ (Daily Mail, 9 January 2009) or ‘Hungry, thirsty, unwashed: NHS treatment of the elderly condemned’ (Independent, 15 February 2011). Medical professionals and patient groups alike have observed neglect and latent failures with increasing frustration. Whether or not there are more charges of negligence against doctors in the future, the recent transformations in the structure of England’s NHS seem set to provide the next definitive shift in the doctor–patient relationship.
Public engagement may be a long way down the list of priorities for some academics but my experience is that testing new research and its relevance has proven to be a creative and engaging process that has stimulated unexpected types of conversation. The Lancet provided me with a fast track to knowledge exchange and new intellectual terrain.
Dr Kim Price, a Wellcome Trust Postdoctoral Research Fellow, is a specialist on the history of medical negligence and its modern policy angles. His latest research forms the bedrock of his first book, Medical Negligence in Victorian England, forthcoming from Continuum in 2013. He is currently affiliated to the Universities of Leicester and Keele (E email@example.com).