An Alternative Perspective on the NHS and the EU Referendum

The NHS has emerged as one of the lead issues in the debate over Britain’s membership of the European Union, ahead of the upcoming referendum on the 23rd of June. For most people, it sits well behind economics and immigration, but its prominence has been nevertheless striking.

In part this has been a case of the two sides trying to benefit from being seen as the true defenders of an institution that is well known to be close to the heart of British voters. The arguments on either side are by now familiar. As in the rest of the campaign, economics and migration have been at the centre of the debate. Remain has warned that the economic repercussions of lost trade following Brexit would be devastating for the NHS; Leave argues that the money that Britain saved if it no longer contributed as a member nation could help rescue the NHS from current financial crisis, and it highlights the dangers posed by the TTIP free-trade deal currently being negotiated between the European Union and the United States, which could see American health care providers competing to take over NHS services. On immigration, Leave argues that open borders place severe strain on NHS services; Remain questions whether immigration levels would fall and draws attention to the value of free movement of labour when it comes to staffing the service.

Most of us by now will have clear views on which side of the argument we find more convincing. In general, the representatives of the NHS and British medicine have come out firmly on the Remain side. But there’s also something that both sides have in common. The emphasis for both is on protecting the NHS as a great national institution. The idea that the NHS is evolving in some respects into part of a broader European health strategy and system of cooperation, and that there could be significant advantages in this, has had no real place in the debate. As elsewhere in the campaign, we have heard little about the positive case for being part of Europe.

However, a generation has now grown up knowing that through membership of the EU they can access health care, not just in the UK, but across much of Europe. Britons travelling to Europe or going there to work and live have been the beneficiaries of what might be described as a kind of European Health System. A symbol of belonging to this ‘EHS’ is the EHIC (the European Health Insurance Card). In fact, it’s perhaps the closest thing the British have to some kind of European identity card.

It was fascinating to hear a British expat in Spain recently talking of the benefits of receiving high quality care from the ‘Spanish NHS’. What was meant by such a term? Does it reflect a feeling that Spain, like Britain, provides an NHS (and that what we are so proud about is not so unique)? Or does it reflect a feeling that when Britons receive healthcare for free in the European Union they are doing so as some kind of extension of the right to free care provided by the NHS? Both possibilities would have significant implications for the meaning of the NHS and its relationship to the nation some forty years after joining the European Community.

For the historian of the experience and meaning of the NHS, one thing is clear: this history now needs a European dimension. The story of how people from other parts of the EU have experienced and contributed to the NHS has been a very significant aspect of the history of the NHS over recent decades (as has the way that Britons have benefited from and responded to this). Britons, too, now have far more experience of European healthcare systems, and this will have had implications for how they think about and experience the NHS. These histories are very far from being understood. We recognise the importance of such a European dimension for our People’s History, but we need your help. If you have any experiences, ideas or reflections, please use the Comment box below.

Giving Blood in the NHS

Tuesday 14 June 2016 is the twelfth World Blood Donor Day, promoted by the World Health Organization with the tagline: Blood connects us all. So this is a good time to think about the history of blood donations and their place in the history of the NHS.

Blood transfusions have a history dating back to the seventeenth century, though it was the conflicts of the early twentieth century that prompted many of the most dramatic advances. In Britain, blood donations have been part of an organised collective system of healthcare since the Second World War. In the first months of the war, the Medical Research Council decided to set up blood depots. This was not new, but proved its usefulness for both air raid casualties and civilian patients during the war. As attention turned to postwar reforms, plans began to fall into place for a National Blood Transfusion Service, managed by the NHS’s Regional Hospital Boards.

Our research at Warwick University is all about the meaning of the NHS and blood donation in particular has often been read as an activity deeply laden with meaning. In 1970 Richard Titmuss published his influential book The Gift Relationship. Surveying blood donation in the UK, USA, South Africa and the Soviet Union, he made the case for voluntary, unpaid blood donation with anonymous recipients as an example of “altruism in modern society”. In particular he drew attention to the NHS:

“What is unique as an instrument of social policy among the countries we have surveyed is the National Health Service and the values that it embodies. Attitudes to, and relationships with, the National Blood Transfusion Service among the general public since 1948 can only be understood within the context of the Health Service. The most unsordid act of British social policy in the twentieth century has allowed and encouraged sentiments of altruism, reciprocity and social duty to express themselves; to be made explicit and identifiable in measurable patterns of behaviour by all social groups and classes. In part, this is attributable to the fact that, structurally and functionally, the Health Service is not socially divisive; its universal and free access basis has contributed much, we believe, to the social liberties of the subject in allowing people the choice to give, or not to give, blood for unseen strangers.”

For me personally, it was a different type of solidarity and community that was fostered from my first time giving blood. After hearing all about blood donation from a local nurse, I was part of a group of maybe a dozen sixth formers from Filton High School who travelled down to Southmead Hospital in Bristol, now old enough to start young. We had varied experiences. There were the girls who were told they didn’t weigh enough to safely give blood. Those, like me, where they had trouble finding a vein. A few who felt a bit light-headed afterwards. But we all went to give blood together, we looked after each other when feeling dizzy or sore or just disappointed at being rejected. Importantly, we all had tea and biscuits (I made sure I got the bourbons) together before leaving – even those who hadn’t been allowed to give blood. A variety of experiences, but all experienced together.

Of course, a community is defined as much by who is excluded as who is included. And I felt a huge sense of injustice when I knew my blood was not wanted because of my sexuality. The question on the form read: Are you a man who has ever had protected or unprotected sex with another man? There was no question of rejecting the blood of any straight person for whom Saturday night meant a club followed by a one-night stand. No question of accepting blood from anyone in a long-term monogamous gay couple, or even a straight woman who had ever had sex with a man who had ever sex with another man. I wanted to tell them I’d been tested for everything that might be a concern and which all donated blood would be screened for anyway, but I was on the outside. My blood was not wanted by the NHS.

The lifetime ban was changed to a one-year ban in 2011, delayed until September 2016 in Northern Ireland, and is kept under review by SaBTO (the Advisory Committee on the Safety of Blood, Tissues and Organs). The slow move towards a less exclusionary system is a sign of the shadow cast over blood donation and transfusion by the ethical crises of HIV/AIDS and serum hepatitis. These were not the first fears of infection to provide grounds for the exclusion of whole groups from giving blood. For example, not only those who had overcome tuberculosis or malaria, but those who had lived in the tropics – which in effect meant the exclusion of all ‘coloured’ migrants.

“The central role of blood in transmitting HIV/AIDS”, as medical historian Virginia Berridge has noted, provided “a new twist on the story of the gift relationship.” The risk of contamination entirely separate from any question of personal behaviour – a distinction highlighted with painful satirical honesty in 1990s mock news show Brass Eye as “good AIDS” – served to undermine confidence in the altruistic system of blood donation. Over the 1970s and 1980s, thousands of NHS patients were infected with Hepatitis C or HIV, with many unaware they had been infected until many years later. The only public inquiry held was the Scottish one which reported last year, as victims and families angrily shouted “whitewash”. Prime Minister David Cameron said in the House of Commons that he could hardly imagine the “feeling of unfairness that people must feel at being infected with something like Hepatitis C or HIV as a result of totally unrelated treatment within the NHS… To each and every one of these people I would like to say sorry on behalf of the government for something that should not have happened.”

The insult of rejection hardly compares to the injustice of infection, and the gift relationship must always depend on the gift being a safe one, yet exclusion from donating blood – on the basis of sexual behaviour, drug use, work in the sex industry, getting tattooed or even international travel – does offer a rather different perspective on the boundaries of universality in our universal health service.

What memories do you have of giving blood or not being able to? Have you worked with or perhaps benefited from blood donations?

See our virtual museum gallery of posters encouraging blood donations

Charting the NHS

Ok. So the NHS is complicated. We get that: after all, it is the largest single employer in Britain, and one of the five largest employers in the whole world. Even if it were just an ordinary business, it would be a complex one, with lots of moving parts.

And it’s not just a case of ‘size matters’ – though of course it does. Famously, of course, the NHS provides cradle to grave services to all British citizens, legal UK residents, and others. Unsurprisingly, that adds to the complexity.  By one means or another, through one outlet or another, the NHS cares for us in sickness and in health – from before our first breaths (via antenatal services) to our last moments of life (in ambulances, hospitals or in our own homes).

But what is with all the organizational charts?

Medical Practitioners’ Union chart of the reforms envisaged by the Willink White Paper in 1944

Even before the NHS was born, it was mapped by and for experts, politicians and the general public. The complex patchwork that made up pre-NHS health care provision (see our gallery here) is visible in diagrams like this one, produced by those seeking to educate workers about the services available to them. And the earliest charts of the NHS itself, intended for the eyes of experts and politicians alone, were pretty blunt about where power lay and how the new services would be administered and directed. Once the National Health Service Act committed the nation to the NHS, the Ministry of Health in England and Wales, the Northern Ireland Home and Health Service, and the Scottish Home and Health Department all began to generate their own charts and diagrams. So did local governments and other bodies. These charts were intended as much to advertise the new health services to their potential users as to provide useable information about the relationships between different parts of the NHS itself. Visually, these charts often placed the public at the centre of the visions of the NHS, or represented its complexity in terms they might recognise. One local authority portrayed the NHS as a modern high street, for example.

Since these early days, many other bodies have also produced diagrams mapping the NHS for various reasons. Academics, including historians, have not been backward in this area. Indeed, some of the most famous charts of the NHS were produced by its official historian, Charles Webster, to explain policy-driven shifts in the structure of the NHS across its history.

Most recently, stakeholders of all kinds and descriptions, from local health authorities through to major think-tanks and political parties have produced their own organisational diagrams of the controversial changes prompted by the Health and Social Care Act of 2012.

As in the first years of the NHS, these vary markedly depending on whom they are intended to inform.  Those addressing the public directly once again often place images of service users at the centre, while those intended for professionals or policy makers may offer a rather different vision. Political and ideological commitments, too, play a strong role in shaping depictions of the new NHS, whether pictorial or purely diagrammatic in nature. A chart produced by the Government as controversy raged over changes that faced strong opposition, looks pretty different from the one produced by those who strongly opposed the changes.

Meanwhile, medical professionals responding to and coping with a major re-organisation, often produce their own mental ‘maps’ of the new NHS, like the one illustrating this blog. Unlike the diagrams produced by each side of the debate, these are maps of the new system as it is experienced or expected to function. Like this one, many such maps are really images of how power, authority and decision making are distributed across a very complicated system, and as such are very individual, based on the specific perspective and position of their creators. The Socialist Health Association has created their own (animated!) organisational chart, at the bottom of the page here, which reflects their doubts about the new system. So has the King’s Fund, with a wonderful companion video, here, drawing and explaining the system.

What would your NHS map look like? Why not draw or describe it for us in the comments below (you can send us your own diagrams here)!

And what does all this mean for us, and for the NHS itself? Well, first, it shows us what a slippery and many-tentacled thing this ‘National Health Service’ really is: we all – experts and ordinary users alike – NEED maps, because providing universal services, free at the point of need, requires many different structures, providers, institutions and pathways. Second, these diagrams remind us that the NHS has never been a static, stable entity. These maps, charts and organisational diagrams are needed in part because the NHS has been reorganised and restructured so many times since its birth in 1948. Finally, they tell us that maps of the NHS, like all historical objects and documents, carry a wealth of meanings, and demand careful interpretation. In other words, even apparently simple and neutral charts have politics – and need to be treated as the ideological artefacts that they so often are.

See our ‘Charting the NHS’ virtual museum gallery here

Examining Alternatives to the NHS

Examining Alternatives: What can ‘managed care’ say to the NHS?

First, a declaration: I love the NHS as perhaps only a (once-) foreigner can. I grew up largely uninsured in an under-insured family in the United States. As a child, all my medical and dental care was delivered by earnest students and harried junior doctors in America’s over-stretched urban teaching hospitals. Offering me up as ‘teaching material’ was the only way my student parents could afford such treatment. Most of that care was excellent, delivered with kindness and a clear sense of vocation. But it was not preventive. Indeed, it was not health care, but the emergency picking-up of shattered pieces: a tuberculosis infection spotted only by a vestigial school detection programme that was shuttered only a year later; perpetual chest and throat infections amplified by cold housing and extreme weather; malaria brought home from my parents’ tropical research travel. And my timely access to such care was only really guaranteed by my parents’ high levels of education and determined advocacy – their pointy middle class elbows still worked, despite our poverty-level family income.

By comparison to this precarious, contingent and unequal ‘system’ of medical care, the NHS looks and feels like a health paradise, and one that I certainly don’t take for granted. From the moment I arrived in the UK, I knew that I didn’t have to keep an insurance card visible in my wallet (‘just in case I get hit by a bus’); didn’t have to wait until I needed emergency care to address a lingering illness; didn’t have to worry about friends and colleagues facing medical emergencies. This last was a particularly sharp and delightful change from my experience at one US institution, where we held bake sales to support a colleague with poor insurance and a chronic condition.

So when I talk about examining alternatives to the current NHS model, it is by no means because I seek to change the current NHS ‘offer’: universal care from cradle to grave, free at the point of need. I have seen what a ‘competitive’ free market in health care offers to the poor, the socially disadvantaged, and even the ‘strivers’: insured individuals and families in work and well above the poverty line, who find themselves facing sky-rocketing medical costs that their insurers won’t pay. In this free market, if you are hit by cancer, or any catastrophic medical emergency, or even a long term chronic condition like diabetes, you must prepare to lose your house, your car, your access to credit, because there is no way you can afford the care you’ll need even on a middle class income – unless you are one of the lucky few with really good medical coverage.

And this is one face of any comparative analysis of alternatives to the NHS: in this period of austerity and NHS brinksmanship, comparing a nationalised (or even a regionalised, as in Manchester) health system to a medical free market shows us what we, as patients, stand to lose if ideology replaces evidence in our healthcare debates.

But there is another face as well. In the US, the alternative medical system that I know best both as a consumer and a researcher, there are systems analogous to the NHS, but embedded in the neoliberal marketplace. What can such systems tell us about both barriers and pathways to healthcare excellence? And what can they say about the ‘meanings’ of the NHS, both to our health and to our culture?

Kaiser Permanente, one of the largest managed care groups in the USA, is one such system – and it has some striking historical parallels to the NHS. Established in 1938 to serve the employees of industrialist Henry J. Kaiser’s steelworks, shipyards, and Grand Coulee Dam project and opened to other consumers in 1945, this managed care plan runs hospitals, clinics, general practices, and health education programmes, and hosts both publicly and privately funded healthcare research — just like the NHS. Since it is of roughly the same vintage, it can – and now does – boast of ‘Kaiser babies’, just like we talk about being ‘born in the NHS’. And like the NHS, it is a system rooted in a vision of better health (and thus lower costs) as the natural outcome of promoting preventive care and ‘positive health’ for its users. Of course, unlike the NHS, Kaiser is neither free nor universal, but it does offer health services on the basis of capitation (that is, to individuals based on paid memberships), rather than on a fee-for-service basis.

In April 2016, I spent time as a Visiting Professor at Kaiser Permanente’s Northern California Division of Research, hosted by the Division’s Health Care Delivery and Policy Section (thanks to Drs. Alyce Adams and Julie Schmittdiel for the invitation!). Like me, this team is especially interested in disparities in health and access to care, and social determinants of health behaviour and health outcomes. Thus we had a shared focus on a topic where history is highly relevant, despite the very different systems in and on which we work. Here in the UK, recent research has made one thing very clear. In terms of generating equal health outcomes for all populations, free is not enough. Even with the NHS operating on the basic principle that healthcare should be accessible to all regardless of ability to pay, there are still marked differences in both self-reported and clinically observed measures of health and wellbeing between population groups. Almost identical patterns of health disparities emerge in data from the Kaiser system, even when researchers design interventions specifically intended to lower financial and structural barriers to good health for system members. Over the next few years, members of the Kaiser DoR and of this NHS team will be working together to ask ‘what do these similarities – as well as the obvious differences – mean for each healthcare system and its members’? What can we learn from comparing ‘cultures of health’? We’ll keep you posted!