Date and Time: Fri, 22 November 2019, 13:30 – 14:30 GMT
Location: The Centre for Better Health, 1A Darnley Road, London, E9 6QH
FREE, but registration is required, please follow the link to register.A Puff of Smoke (published by Jonathan Cape 7th November) is a graphic memoir about what it is like to grow up with an illness that no one can diagnose. Sarah Lippett spent eleven years suffering with symptoms from an unknown condition, until she was diagnosed with the rare disease Moyamoya at the age of 17.
For the month of November (1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir.
Join Sarah as she talks through the process of revisiting her past and piecing it back together as a graphic memoir. The talk will be followed by a short workshop where participants are invited to create sequential narratives based on their own lived experiences. No drawing experience necesssary.Read a recent Observer review of “A Puff of Smoke” book:
Providing effective treatment and support for mental distress is a stated government aim. Within low-income communities, use of antidepressant medications is relatively high, but current strategies frame mental distress as an individual psychological problem, masking the factors that are often the root causes of suffering e.g. social isolation, unemployment.
De-STRESS project research aims to:
examine why and how people’s ability to cope with poverty-related issues has become increasingly pathologised
understand how high levels of antidepressant prescribing and use are impacting on people’s health and wellbeing in low-income communities
The lead author of the report is Dr Felicity Thomas, Senior Research Fellow on the Cultural Contexts of Health, and a Senior Research Fellow in the Medical School at the University of Exeter.
When: Tuesday, October 22, 2019, 8:00 – 10:00 pm
Where: New York Psychoanalytic Society & Institute, 247 East 82nd Street, NYC (btwn 2nd and 3rd Aves)
Martin Moore reports from the field …
The European Association for the History of Medicine and Health held its biennial conference in Birmingham on August 27-30th, an event at which both Michael J Flexer and I were lucky enough to speak. Under the theme of “sense and nonsense”, the conference brought together scholars from around the globe to explore the emerging field of sensory history, covering topics as diverse as smell and health in the art of the Dutch Golden Age to the introduction of cocaine into China at the turn of the twentieth century.
The first paper from the Waiting Times’ team came on the morning of Thursday 29th from Michael, as part of the Senses and Modern Health/Care Environments network led by Dr Victoria Bates. As usual, Michael’s paper was a tour de forceof wit and insight, and generated some of the more interesting summaries on the Twitter once divorced from context…
Michael’s exploration of the semiotics of contemporary general practice waiting rooms provoked lively discussion, not least around how such spaces were reworked by contemporary political economies and moments of resistance to intended use.
However, two aspects of the paper stuck out for me.
The first was the way in which Michael deconstructed the concept of “sense” through Deleuze, pointing out that many individual aspects of the waiting rooms had anticipated user needs but generally failed to come together cohesively to make sense as a whole. The accumulation of relics (defunct signs of varied sizes, old magazines), unintentional juxtapositions (advertising social care for the elderly on a space reserved for infant welfare concerns), and perhaps even interrupted efforts to “dress” the space created a sense of incoherence, taking patients out of the “now” and scattering them throughout time (and space).
The second was the total absence of the general practitioner from the waiting room.
Responding to a question drawing on contrast with the premises of German GPs, Michael noted that these spaces almost consciously removed the doctor’s personality. In many respects, this absence emerged from contemporary structures of ownership, where GPs likely work in – rather than own – the spaces in which they practice. Indeed, this divorce created situations where doctors could not explain the presence of certain leaflets in their waiting rooms, nor could practice managers. Agreements were made to advertise certain products or services at the Commissioning Group level, and so the spaces of waiting would be subject to reshaping at the level of management rather than labour.
Both these points caused me to reflect on my own work, and on the specific history of general practice care in Britain.
My paper (delivered on the Thursday afternoon) looked to explore why GPs began to pay so much attention to their waiting rooms during the 1950s and 1960s, and how the changes being pioneered at this time reworked the sociality and sensory experience of waiting for primary healthcare. In this I began to consider some of the unintended consequences of certain changes, such as the use of public information notices, and here historical echoes with Michael’s considerations emerged. (For instance, how posters demanding patients be responsible for managing one’s own time, as well as that of the doctors, could ironically create a sense of disempowerment and distance from moments of care.)
It also deployed some rather cheap tricks to keep the audience interested…
However, what Michael’s paper made me appreciate were the ways in which structures of ownership could influence how waiting was shaped and experienced. Although the creation of the NHS removed formal “ownership” from GPs in that practices could no longer be bought or sold as private property, GPs nonetheless controlled how their practices were laid out and interiors designed. At least in the 1950s and 1960s, GPs largely determined how the time of waiting was passed – what patients were exposed to, and how they were held.
Of course, patients found ways to disrupt the best plans of doctors, such as damaging furnishings or removing materials from the premises, whilst the chatter that might pervade waiting rooms could hardly be legislated for or controlled if patients were determined. (Indeed, based on Michael’s observations, waiting in general practice may well have been more communal in the post-war decades, reflecting changing lengths of waiting, the number of patients in the waiting room and broader cultural practices of waiting in public spaces.)
Moreover, Michael’s references to how a space could be made “nonsensical” by the sediment of previous layouts or interrupted actions also underlined how I may have previously placed too much emphasis on the coherence of GPs’ plans for redecoration; in situ, and longitudinally, their decisions may have made less sense than intended.
Nonetheless, the contrast between our papers drove home how the aggregation of practice organisation since the 1990s, and particularly the 2000s, may well have altered the waiting experience for patients.
Beyond our panels, there were several personal highlights from the event.
The panel on “Modern Medical Visions” featuring Beatriz Pichel, Kat Rawling, and Harriet Palfreyman offered eye-opening (apologies for the pun) explorations of the way that photographs and drawings provided multiple modes of viewing patients and illnesses throughout the nineteenth and twentieth centuries, and underlined how such materials functioned in multi-sensory and experimental ways.
It also featured original artwork (can you guess which one is the creation of a medical artist?):
Claire Hickman’s discussion of birds and the therapeutic hospital environment was another paper that made me think about temporalities in new ways, and particularly the affective and psychological relations produced by asynchronous life-spans. (Although the absence of a “late parrot” was disappointing.)
However, perhaps the most invigorating – and humbling – paper came from Tracey Loughran’s keynote, which explored gendered and embodied time through women’s memories and experiences of menstruation.
The paper stressed the importance of historicising the body, placing it in shifting cultural and social contexts, whilst also not denying the embodied-ness of historical subjects. It thus raised important questions about how we might think about the ways that changing expertise and technologies around reproduction, conception and menstrual cycles have mediated women’s experiences of embodied time, establishing different norms, expectations, and practices across generations.
In addition, though, Loughran also queried the multiple temporal entanglements of doing historical research, and she ended her keynote reflecting on the embodied experience of being a female historian. She castigated those male academics who wasted their female colleagues’ time with self-indulgent – and ignorant – “more of a comment than a question” interventions, and who often took the same approach in everyday working life. She also called for female academics to resist pressures to take up less time and space, and to remind them that they were the future.
It was a powerful clarion call, and one which will definitely live long in the memory.
All in all, then, the conference was a fantastic – if somewhat exhausting – four days. It was intellectually enriching and raised politically vital issues. The University of Birmingham provided a great venue for the event, and my generous local guides made me appreciate the city much more than I had previously.
My only regret was that I was unable to attend every panel, with many running simultaneously. Well, that and the fact that there was no karaoke. Fittingly, I suppose my wait to sing “Time After Time” goes on …
MAKING THE MOST OF WAITING
Notes from the Waiting Time workshop held at the Wellcome Centre for Cultures and Environments of Health, 12 June 2019
If time is a great healer, is waiting the problem?
Florence Nightingale (1859) certainly thought so. She saw it as bad for health – “apprehension, uncertainty, waiting (my italics), fear of surprise…do a patient more harm than any exertion.” It’s tiresome too, as the Kinks noted in 1965 and in the meantime, we’re all Waiting for Godot (who never comes). For health systems, waiting is a mark of inefficiency that undermines ‘customer’ confidence. It is a focus for targets and management expedients in a culture which expects action, now!
But, is this the whole story?
Earlier this summer, a workshop at Exeter showed that – sometimes – embracing the wait can be its own reward. It’s the quality of care and use of the time spent waiting that makes the difference between a ‘good’ and a ‘bad’ wait. It was a reminder that, sometimes, ‘wait and see’ is a plausible alternative to immediate action when treatments and outcomes are uncertain.
A long wait can allow health issues to resolve through natural healing. Rest and recovery may produce a better outcome than immediate surgery. But, waiting can also mean delay, with later diagnosis and treatment and even earlier death if serious conditions are not caught in time. The challenge – as ever – is to determine priorities from among competing needs. For example, handlers seeking to make the right call on waits for ambulances face an acute dilemma balancing availability of transport with urgency, system rules and patient need.
Waiting allows for exploration and for time to assess progress. ‘Watchful waiting’ at gender identify clinics allow young people to grow while services explore and assess their development. Such exploration can, however, mean suffering for young people clear in their desire to transition, not least by allowing the physical developments that will make the eventual transition harder. Parents and carers are not always persuadable about the merits of such delay and may be suspicious of delays in accessing scarce services. The right words can help. ‘Active monitoring’ seems to work better than ‘watchful waiting’.
Waiting – not always so bad?
Waiting can also support the therapeutic process. It can validate individual experience as the end of life approaches, affirming the value of lives lived for individuals and their families. Creative expression and appreciation through poetry, music, painting (van Gogh’s “Starry Night” was given as a stunning example) and nature can provide a vehicle for this approach. Importantly, it reminds people that they are not just “boring old farts”, as one participant in the Waiting Times’ hospice project remarked.
The policy challenge is to acknowledge – and balance – the positive aspects of waiting with the negative aspects of delay in care and treatment. This challenge will be met by better understanding the social and cultural context of such care, by harnessing patient experience – including meeting concerns about being fobbed off because of a lack of – or cuts in – available services, and reflecting these concerns in the design and delivery of services that are welcoming and available to all.
Developing services that reflect the positive aspects of waiting will require:
- changing the character of public services by putting the individual at the heart of service provision, and through greater transparency and dialogue about the options for care and treatment;
- being straight about the role that access to services – or lack of it – plays in creating harmful delays and widening health inequalities; and
- restoring the care and support of individuals to a central place in the work and training of professionals, and allowing sufficient time in day-to-day routines to ensure a good quality of care.
This will not be easy.
The Centre’s DeStress project has shown how stigma and deterrence have re-entered the public service lexicon affecting its character, and citizens’ experience. Vulnerable and disadvantaged people bruised by claiming welfare benefits fear this ‘hostile environment’ will seep into the health service, notwithstanding the efforts of the NHS to resist it. It can take time to build courage to visit the GP and while waiting at the surgery, people feel anxious, doubtful they should be there, and guilty about wasting the doctor’s time when services are under strain. This is a recipe for an unsatisfying consultation. A rapid reach for the prescription pad can only reinforce patient doubts and wider sense of powerlessness, which – in turn – acts as a barrier to further engagement and greater risk of ill-health
Timely access to services will help maintain good health and prevent disease but this is difficult to achieve with big differences in service provision – and waiting times – across the country. The ‘inverse care law’ – where the availability of good medical or social care tends to vary inversely with the needs of the population served – is alive and well.
While there is no ‘one size fits all’ formula for waiting – patient need and the training and capacity of professionals vary – the workshop heard that professionals holding hands across a ‘shark infested sea of uncertainty, diagnosis and treatment to an island of recovery or resolution’ can maintain the dignity, mental health and wellbeing of individual patients during this journey. Yet, social workers and others are not always able to sustain this caring role, given today’s emphasis on management organisation and cost concerns. Volunteers often have to fill the gap. There is a poor fit too between family needs and the organisation of primary care, and a lack of clarity about available support services.
“Don’t forget,” said Florence, “patients are shy of asking,” and without explanations they remain in ignorance about why they are waiting. A situation where ‘nothing happens, nobody comes and nobody goes’ is disorientating. It also reflects professional uncertainty and a lack of confidence in the system. Everyone wants health services that are delivered in a fair, timely and appropriate way. However, better waiting list management will not deliver this on its own without a clear focus on the quality and time taken over the care and treatment of individual patients, and the views and experiences of patients themselves.
Monday June 17, 2019
9.30 – 16.30
Room 101, 30 Russell Square, Birkbeck College, University of London
Lisa, our PI, will be speaking as part of this symposium in response to the work of Professor Lisa Guenther and her book Solitary Confinement: Social Death and Its Afterlives (2013). Professor Guenther is visiting Birkbeck as part of the Hidden Persuaders (Birkbeck) and Pathologies of Solitude (Queen Mary) programmes of research.
For more info on the event, and to book tickets, please click here.
Lisa will be talking about her book Enduring Time at Goldsmiths later this month. This is free event and no registration is required.
314, Third Floor, Professor Stuart Hall Building
10 June, 2019
17.00 – 19.00
Drawing on recent work on ‘enduring time’ in this talk I revisit Julia Kristeva’s 1979 essay Women’s Time, reading it against contemporary theories of time and gender to develop a notion of a ‘maternal death drive’. Kristeva conceptualized female subjectivity as strung out between cyclical time (repetition) and monumental time (eternity without cleavage or escape). These two ‘feminine’ forms of time work to conceal the inherent logic of teleological historical ‘masculine’ time which is linear, progressive, unfolding, and yet constantly rupturing, an ‘anguished’ time. Masculine time, Kristeva argues, rests on its own stumbling block, which is death.
What if historical time is no longer ‘unfolding’, progressive or linear, but is ‘foreclosed’ by the immanent disasters of capitalism? If we are now living in a suspended present in which time fails to unfold, then the tension between masculine and feminine time is radically altered. Historical time itself becomes monumental, and feminine time no longer sutures the future in the figure of the child, as Lee Edelman argued in No Future (2004), but articulates a kind of dynamic chronicity, alive to the potentials of not moving on, but without giving up on the ethical principle of one’s own future being bound up with the future of another. From this perspective a ‘maternal death drive’ drives a wedge between the repetitive return to inertia of Freud’s death drive, and the heteronormative developmental time line of reproduction that queer theories of temporality have worked to disrupt. What comes to matter, when time is suspended in its maternal form, is the time of mattering itself – the time it takes for us to come to matter to one another in a suspended present with no future.
For more info click here.
Our PI Lisa will be talking as part of this event at Birkbeck.
Keynes Library, Birkbeck School of Arts, 43 Gordon Square, WC1H 0PD
Thursday, 6 June, 2019
Experiences and practices of care have changed dramatically in the past three decades. Since the passing of the NHS and Community Care Act (1990), healthcare, social care and short-term psychiatric care have been increasingly decentralised and delivered ‘in the community’. This shift has been both practical and discursive: altering the pathways by which care is accessed and the sites in which it is received; and changing perceptions surrounding the role of those receiving care in wider society. In the case of mental healthcare for example, it has led us to move from the ‘mental patient’ to the ‘service user’ as labels that define the relationship between persons receiving care and those providing it.
Thirty years on, community care continues to be a fraught subject. On the one hand, it has been seen as having a democratizing influence, opening up the possibility for greater patient choice, and of integrating patients’ and service-users’ voices into care provision. On the other, it continues to be viewed as a chaotic cost-cutting exercise which leaves vulnerable people to fall through the cracks.
‘Conversations on Care and/in the Community’ symposium invites researchers to engage in a series of conversations surrounding these new social and spatial conditions of care in the twenty-first century.
The event is wheelchair accessible. Please contact the organiser if you have any other access requirements.
[Image credit: Hedley Finn, The Kings Fund, Wellcome Collection]
For tickets and more info click here.
At a time when expertise is under increasing assault, we’re keen to establish meaningful and mutually beneficial relationships between researchers, pracitioners and policymakers, and to explore the opportunities for our research to have lasting, valuable impact on policy formation.
Join us at the Wellcome Centre for Cultures and Environments of Health (University of Exeter) for a day of case studies, workshop activities and roundtable discussions, sharing ideas for and experiences of influencing public policy through research.
Laura Salisbury, PI of the Wellcome-funded Waiting Times project based at the centre, and Victoria Bates (Centre for Health, Humanities and Science, University of Bristol) will introduce the day and the key themes and we will have case study presentations by:
Havi Carel, Life of Breath
Lorraine Hansford, DeStress Project
Jen Groveand Rebecca Langlands, Sex & History Project
Kate Massey-Chase (Exeter)
Katie Beswick (Exeter)
Maria Vaccarella (Bristol)
Fred Cooper (Exeter)
Arthur Rose (Bristol)
Lunch, coffee/tea and refreshments and a wine reception will be provided. Please let us know of any dietrary requirements.
Places are free but please book via Eventbrite.
Travel bursaries are available for postgraduate researchers. Please contact email@example.com.
Whether in pop culture or academic work, time and space have often been inextricably linked. Though the Waiting Times team has been thinking about temporality in ways that breaks – or at least complicates – this connection, one space that I have been thinking about recently has been the general practice waiting room.
The waiting room as an historical space
As work by the Cultural Histories of the NHS project suggests, contemporary experiences and associations of NHS waiting are often shaped by its material elements, not least the chairs and signs that populate its waiting rooms.
The work I have been doing has been to consider how such spaces and associations came to be. Much like the medical appointment, the waiting room is an historical construction. It is a space which only began to receive sustained public attention in Britain with the collectivisation of healthcare funding under National Health Insurancein 1913, and which practitioners only began to think about substantively following the creation of the health service after 1948.
The creation of the NHS was particularly important, with the removal of insurance principles or payment barriers increasing the demand on premises that had not been designed to hold large numbers of patients: many practices in 1948 were in small converted shop premises or in a GP’s house. The latter might have the dining room as a waiting area, but patients waiting outside either type of premises was not uncommon.
The NHS also made criticisms of health services a problem for central government – leading politicians to apply pressure for reform – as well as drawing much firmer lines between general practice and hospital practice, forcing GPs to think about how to distinguish themselves professionally.
The post-war settlement and the waiting room
The way that the NHS brought attention to the waiting room often meant that discussions were framed in relation to the promises of – and discontents with – what some historians refer to as the post-war settlement.
With regards to healthcare, elite practitioners and organised professional bodies like the British Medical Association had opposed the NHS as conceived by the Labour government in 1948. Among other things, they feared that state employment would result in a loss of income, professional freedom, and unmediated professional-patient relationships.
GPs in particular continued to criticise the new service into the early 1950s.
Some complained about a loss of class deference and professional status, of being treated by patients as servants or ‘suppliers of medicines’ rather than as a medical advisers or even as friends.
They also argued that, by removing financial barriers to care, the NHS created demanding and entitled patients. Patients would allegedly enter the consulting room ‘‘to tell us what is wrong and what [they] want for it’.
These anxieties about status and the shifting relations of medicine were played out in discussions of waiting rooms.
Reports were sent to central government departments about patients who would ‘tear out pages of periodicals in the waiting room, grind sticky sweets into the carpet, take cushions, and even carve their initials on the furniture’. One GP appealed to the Ministry of Health to make ‘it quite clear to the general public that a doctor’s waiting-room is not a place of public entertainment, but rather a place where people are expected to behave with a certain amount of respect and decorum’.
The focus on patient behaviour and deference was indicative of the class-bound anxieties of some GPs, many of whom would have previously had separate entrances and waiting spaces for private patients and those receiving publicly-funded care. No longer able to segregate their patients, some doctors were still so concerned about working class patients bringing dirt into waiting rooms that they even used interior design to prevent ‘greasy heads’ marking walls, and praised the durability of flooring to stand up to workmen’s boots.
The challenges of writing histories of the waiting room
There is still much to explore about how waiting rooms were thought about and redeveloped over the twentieth century. However, researching the subject so far has not proven straightforward.
Methodologically, I have faced problems familiar to many social and cultural historians. The “archives” of general practice waiting rooms are hardly substantial, and have been largely created or curated by medical professionals, civil servants, and media editors. Equally, their materials are predominantly composed of digressions about waiting rooms made in discussions about other topics, or are made up of complaints that reveal expectations and social norms only by their absence or negation.
The dominance of complaints from “establishment” groups, however, has also posed other challenges, causing me to reflect on my own subjectivity and affective responses to sources.
As a social historian, I share my field’s political and intellectual sympathies to histories of marginalised groups, as well as its critical disposition to power and professional self-interest. Likewise, as someone who has grown up with – and been a long-term beneficiary of – the NHS, I have been interpellated by its core ideals (if not lived practice) of universal healthcare, free at the point of use.
As a result, GPs’ grievances initially struck me as exaggerated, underpinned by a sense of superiority to patients, and indicative of an opposition to any form of egalitarianism from professionals with considerable class privilege.
Indeed, surveys conducted at the time provided some support for this reading, with one prominent medical observer noting that ‘some general practitioners are so easily irritated by such an attitude [of entitlement and lack of respect among patients] that they are apt to think it more widespread than it actually is’.
My first engagement with these materials, therefore, was to read criticisms primarily for the way they provided insight to the reception of the post-war welfare state, and for the strategic purpose the played inprofessional and political projects.
Nonetheless, further exploration and consideration has brought home the importance of maintaining critical reflection on my own subjectivity and affective responses.
Historically, it was not just doctors who were sceptical or anxious about the NHS. State provision had not been welcomed by everyone. For instance, though many were quickly convinced of the NHS’s advantages, a significant proportion of the British public were initially concerned about the potential loss of ‘the personal touch’ in state-funded medicine.
Moreover, though there is a clear element of performativity in GPs’ complaints, in reading them differently I have also begun to tease out insights into the culture of the early health service – the way its proposed radicalism was filtered through inherited buildings and beliefs, the presumptive middle-class norms behind ideas of universality, and the ways that attitudes towards patients were slowly built into the very fabric of the service.
Even more varied readings are possible, ones that might reveal more about the everyday life of post-war Britain. Complaints about demanding patients, for example, could provide insight into the complexities of the psychological life of traditional middle-class groups in a period of rising affluence but concern about relative decline. Similarly, reading discussions about nailed boots and greasy heads for indicators of patient behaviour might generate insight into the changing nature of work and housing, or shifting social norms about self-presentation in public spaces, if read over time.
However, changing the way I engage with sources and the questions I ask has required more than a change in methodology or conceptualisation.
I have had to maintain an awareness of my own position in academic and political fields. I have had to reflect on how my work has been informed by my own psychological investments in the NHS and its proposed values, as well as by my attachment or critical disposition towards certain professional groups.
Of course, undertaking practices of self-reflection is not the same as striving for “objectivity”, or somehow overcoming my position as an historically-formed subject. Instead, it is to realise that a critical disposition towards the historian’s subjectivity can open up new questions and new avenues for research.
Who would have thought that even just thinking about waiting rooms (rather than being forced to wait within one) could encourage such existential questions? (Bergson, put your hand down – no-one likes a show-off.)
Dr Martin Moore is the historian on the Waiting Times project.
For more in depth analyses, see work by Nick Hayes: https://academic.oup.com/ehr/article/CXXVII/526/625/438109. And Andrew Seaton: https://academic.oup.com/tcbh/article/26/3/424/2451908.