Guest Editor

In Part 6 of the Hospital Charity takeover, Nora Kenworthy shares two poems from her recently published book Crowded Out (2024), where health care crowdfunding campaign narratives become evocative choruses.

For nearly a decade, I have studied the use of crowdfunding sites like GoFundMe to raise money for health care needs in the US. My work in this domain marries intimate ethnographic inquiry with large, data-driven analyses to document the broad contours of inequity in the crowdfunding ecosystem. Doing this work requires reading and engaging with thousands of GoFundMe narratives on different topics. In addition to exploring individual stories of crowdfunding experiences, I wanted to find a way to convey to broader readers the unique form and affect of crowdfunding appeals, which are both highly personal and very public. While these narratives frequently follow similar styles and conventions, and express similar affective experiences, they also share intimate details of crowdfunder and patient lives, stories, struggles, and identities. 

I began writing composite, found poetry from snippets of text on different GoFundMe campaign pages as a way to make sense of, and convey, these unique narrative characteristics. I wanted to capture the remarkable alignments and frictions that arise among narratives, which are so often encountered individually, but to the researcher begin to sound like a haunting chorus of repeated phrases, appeals, and needs. I also wanted to find ways to capture the unique elements of many of these narratives while offering users a greater measure of privacy than they were able to find through online crowdfunding. 

The lines and stanzas of these poems are made up of text from many different crowdfunding narratives collected throughout my research. Text fragments are compiled into the poem through paraphrasing or splicing such that they cannot be traced back to their original campaigns. I used reverse online searches of each text fragment to ensure confidentiality. 

The two poems below explore common discursive and affective elements of crowdfunding narratives in the US milieu: (1) appeals to personal goodness and (2) having to set aside one’s pride. These themes relate to a central point of inquiry in my work on crowdfunding’s “moral toxicities” and how these relate to broader social mores about asking for help and receiving it in late liberal systems. The poems use repetition of similar but unique phrases to evoke a choral effect. This repetition creates a collective experience intended to counteract crowdfunding’s highly individualized and marketized experiences for users. At the same time, differences in pitch, tone, and syntax remind the reader (I hope) of these uniquely human stories.

[1] Very good people

First of all, we ask for your prayers for Emily’s healing.

Emily is a very good person who loves the Lord and her family.

This is the story of a spectacular human,

one of the most tenderhearted, understanding,

funny, loving, upbeat,

loyal, ambitious, optimistic,

charismatic, tenacious,

one of the kindest, friendliest, biggest-hearted,

people on the planet.

The best human being

I’ve ever known.

A hard worker and good person

who loves his family very much.

A good person with a big heart

who just wants to survive to help others.

Who works two jobs

and takes care of her grandkids.

Who works his hands to the

bone everyday to feed three daughters.

Who never quits, even when

there are many cases of COVID at work.

Who was pulling himself up by the bootstraps

when Big C cut the straps.

We were promised the American dream,

that bad things don’t happen

if you work hard, do well,

are a good person.

It doesn’t matter to cancer that you’ve been a good person.

That you’re a father, a mother, someone’s child

a caring daughter, supportive sister, devoted partner

a loving dog mom

a champion of underdogs

a gifted teacher

an army medic

a widower

a hardworking tree lover

a phlebotomist police officer

a talented and kind lawyer

or that you’re only 30 and a very good person,

but can’t afford the transplant.

Cancer doesn’t care.

It doesn’t matter if you’re rich or poor,

educated or not,

that you’re 31 years old

and the sole breadwinner for your family.

This process

of proving your worth

and your right to claim it

is humiliating

and only sometimes fruitful.

[2] A matter of pride

Hello.

Yeah, I’m still here.

I pray I’ll find the right words to tell this story.

I’d never do this but I’m swallowing my pride

This might be the hardest thing I’ve ever had to write.

But here we are (swallowing pride)

Okay let’s try this again. I cancelled the last one

within minutes because . . .

well, to put it simply, pride.

I’m simply trying to survive, pushing past my pride

I have no idea how to do this

without completely debasing myself.

The only thing bigger than his heart is his pride

So many people have asked

how they can help and I

keep saying, “we’re fine, we’re fine.”

But we are not fine.

I am putting our pride on the back burner

That fact I even have to start

a GoFundMe is hitting my pride lol, but

I was told to reach out if I needed help.

Friends, now I need it.

Here I am, with humility and swallowed pride

Desperation makes us do

things we might not do otherwise, but

desperation is now my reality.

It was bad enough to beg for money

the first time, and I’m even more ashamed now.

I’ve conceded trying to swallow my pride

No one likes to admit publicly they are struggling,

have lost or failed or are in pain.

That we need help.

But I’m coming to you with my pride set aside

It pains me to ask this—

pains, and shames me.

I’m tossing my stubborn pride out the window

For the first time in this battle I am really scared.

My savings are gone and I’ve no more income.

I’ve learned the hard way to swallow my pride

Gradually, we’ve redirected every single

penny to medical expenses

I shouldn’t let pride keep me from asking for help . . . right??

Her life is on the line if we can’t pay for this surgery.

Our pride’s gotta jump out the window

This is how hardworking people end up on the street.

Not sure whether I should be shamed or optimistic

this is not the American dream,

it’s my American nightmare

It feels greedy to ask for what I need

But I know of no other way.

Maybe we’re all in this together, maybe

hardship teaches us to rely on one another.

Anyways, I have cancer. Again.

Postscript

The above passages are excerpted from Crowded Out: The True Costs of Crowdfunding Healthcare by Nora Kenworthy. Reprinted with permission from The MIT Press. Copyright © 2024.

About the author

Nora Kenworthy is a Professor of Nursing and Health Studies at the University of Washington Bothell. Her work—including her recently published book Crowded Out (2024)—examines how politics, technology, and inequality affect health.

In Part 5 of the Hospital Charity takeover, Fanny Chabrol reflects on charity in the building and operating of hospitals, detailing its inextricable links with capitalist cultures.

In Part 4 of the Hospital Charity takeover, Agnes Arnold-Forster traces the history of Great Ormond Street Hospital’s fundraising campaigns and the Royal Family’s involvement in them. 

The Royals only rarely use the NHS, but the NHS uses the Royals.

When the architects of the NHS were drawing up their plans, they faced a problem. What should they do with hospitals’ vast charitable endowments? Should they allow individual institutions to keep their cash, pool the money regionally or even nationally, and should they let hospitals continue to actively fundraise? This was supposed to be a state-funded system, with funds more or less equally distributed across the country – the vast wealth of some institutions posed a challenge. So, they came up with a solution. Individual hospitals in England were allowed to keep their cash, but weren’t allowed to fundraise. And, they were restricted in what they could spend their existing money on. They could spend it on added extras – staff Christmas holidays, ward window boxes, and research – but they could not spend it on things like patient care, essential running costs for, or staff salaries. Those would be state funded.

In the 1980s, though, things changed. In October 1979, the Department of Health and Social Services sent hospitals and health authorities a memorandum on fundraising by NHS staff. It stated that Ministers were reviewing the general policy, and while they indicated further changes were also being considered, they had already instituted a key reform: “there is no longer any objection to the participation of NHS staff in voluntary fund-raising activities.”[i]

This was great news for some hospitals, which were struggling to update their buildings and facilities, and were in desperate need of more money. One such hospital was Great Ormond Street Children’s Hospital in London. Over the course of its NHS history, it had been able to make some extra cash via the royalties it earned from the sale of the children’s book Peter Pan, which the author, JM Barrie, had bequeathed to the institution in the 1930s.

In February 1980, GOSH’s Treasurer wrote to the Department of Health and Social Security to request an update on potential changes to the legislation. “Further to our conversation of yesterday,” he wrote, “I should be grateful for your further advice as to whether the Board will be able to seek funds from non-exchequer sources.” He justified his request by explaining GOSH’s financial situation, “the Hospital Group is facing a desperate financial crisis and has been forced to close two twenty bed wards.”[ii]

GOSH was in luck, and later that year, the government liberalised hospital fundraising policy, transforming the way NHS institutions raised money for things like big capital projects. No longer reliant solely on the public purse, they could get creative. GOSH wasted no time, employing a professional fundraiser, Marion Allford, who was tasked with raising £30 million to address the “extreme lack of space” in the crowded central London site. “Clearly”, she wrote in 1987, “a hospital which has evolved over more than 100 years had not always had the opportunity of constructing new buildings where necessary.”[iii] In 1986, the Secretary of State had approved this rebuilding plan, and agreed that the DHSS would contribute £20 million, leaving the hospital to raise the rest.

Marion had ten months before the appeal would go public, during which she planned to make “personal approaches to individuals, companies and trusts” in an attempt to secure large donations from people flattered to have been identified as particularly benevolent. The second phase would open “with as much publicity as we can obtain” which required, in Marion’s opinion, the support of the Royal Family.[iv]

Initially, they planned to just approach Diana, Princess of Wales, but decided that because a children’s hospital ought to be the concern of parents, rather than just mothers, they should attempt to bring Charles on board too. The GOSH archive is fully of letters back and forth between Marion and the royal staff – persuasive, flattering letters that attempted to make clear the hospital’s dire straits.

During the first phase, the Prince and Princess of Wales secretly (so as not to blow the appeal’s cover) visited the hospital to assess the situation and meet the fundraising team. About a month later, they agreed to host a “small reception” at Kensington Palace for “major donors to the Redevelopment Appeal”. Towards the end of 1987, the hospital launched the appeal under a new name. The Wishing Well Appeal was the “largest single project appeal that has ever been mounted” and was remarkably creative in its approach, setting the standard for hospital fundraising for the rest of the century and beyond. The largest single donation they received was £3 million from Gary Weston, chairman of Associated British Foods, and the Variety Club of Great Britain pledged to raise the same sum.

The Midland Bank donated £1/2 million, enabling GOSH to run a major advertising campaign, and multiple magazines and newspapers offered the hospital free advertising space. This actually caused some trouble, when GOSH ended up promoting its campaign on billboards opposite other children’s hospitals across the country, who were understandably peeved by the sudden flow of cash from their local communities to this relatively well resourced central London institution.[v]

The Prince and Princess of Wales were key to the public face of the campaign. Both were the appeal’s patrons, and publicity materials made much of the fact that Charles had gone to GOSH to have his appendix removed as a child. The couple were regular visitors to the hospital, ensuring that their meet and greets with sick kids and their parents were captured in photographs and on television broadcasts. On the 3^rd December 1987, Diana distributed Christmas presents to the children on the wards. The couple’s relationship with GOSH and its fundraising continued into the 1990s, and even after they separated in 1992, they still made regular individual visits.

GOSH was the first NHS hospital to run a campaign of this scale. Since the 1980s, they have continued to set the standard, and charitable donations have funded a growing proportion of NHS services and capital projects. The British public has a remarkable emotional investment in their health service, and GOSH was smart to bring together two much-loved national institutions in their efforts to raise cash.

But as I’ve written elsewhere, charity in the context of the NHS “isn’t without its flaws, both ideologically and practically”. As the discontent of other regional children’s hospitals suggests, it is difficult to distribute donations evenly and fairly across the country, and the very rich institutions, like GOSH, tend to be in major urban centres. GOSH, as a hospital that cares for blameless babies, also has an easier time raising money than institutions catering for adult and supposedly less deserving patients and communities. Indeed, the royals’ involvement in such campaigns reflects their fundamentally inequitable nature. Effective, maybe; generous, of course. But not, perhaps, particularly fair.

About the author

Agnes Arnold-Forster is a writer and historian of healthcare. She is Chancellor’s Fellow at the University of Edinburgh. She tweets from @agnesjuliet. 

References

Arnold-Forster, Agnes. 2022. “Charitable Health Service”, LRB Blog. February 22. https://www.lrb.co.uk/blog/2022/february/charitable-health-service

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[i] GOS/15/444 Board Funds General, Endowment Funds, 1977-84

[ii] GOS/15/444 Board Funds General, Endowment Funds, 1977-84

[iii] GOS/6/2/6 Visit of TRH The Price and Princess of Wales

[iv] GOS/6/2/6 Visit of TRH The Price and Princess of Wales

[v] GOS/6/7/29

In Part 3 of the Hospital Charity takeover, Hannah Blythe analyses United Sheffield Hospitals’ annual reports and explores the boundary between charity and state-funded healthcare in the first decades of the NHS

In Part 2 of the Hospital Charity takeover, Francesca Vaghi  discusses children’s perspectives on charitable fundraising, exploring how meaningful engagement with young people can, and should be developed.

Although interest in children’s participation in public life is prevalent in the humanities, the social sciences, and policy making, children’s perspectives and contributions to the ‘adult world’ often remain unrecognised. This is, in part, because it is common for adults to underestimate children’s awareness and understanding of discourses in the public sphere. Yet, when asking children and young people about their viewpoints in a meaningful way, this is clearly far from the truth. 

In Autumn 2023, children and adults were invited to take part in a public engagement activity at the Riverside Museum in Glasgow, inspired by work led by Steph Haydon which explores NHS fundraising campaigns spanning the last one hundred years. We encouraged participants to share their views about charitable fundraising in the NHS by designing their own fundraising posters for imagined campaigns, using drawings and collage. As a childhood researcher, I wondered how we would best make the topic of our public engagement activity intelligible to young participants. Discussing charitable and voluntary intervention in the NHS has been a rich, if sometimes complex, endeavour with adults who have taken part in our research. However, my worries were unwarranted. Given that the NHS is one of the most recognised ‘brands’ in the UK (Stewart 2023: 6–7) and charities, championing various kinds of causes, are embedded in our public imaginary, children are equally exposed as adults to messaging about the NHS and charitable fundraising, for the UK’s health service and generally. As such, they have their own views about this topic and valuing these is important. 

Sevasti-Melissa Nolas and colleagues have developed a theoretical and methodological repertoire to understand children’s perspectives and participation in public life, by developing the notion of ‘idioms of childhood’ (Nolas, Aruldoss, & Varvantakis 2019). If children and young people are engaged with meaningfully and on their own terms, it is easy to understand their views about what happens in the public domain and therefore recognise their contributions to it. By developing idioms of childhood as a tool to actively listen to children, Nolas and colleagues encourage us to ‘think about and engage in children’s communication’ to develop a ‘practice of paying adequate attention to children, a disenfranchised group in relation to the public sphere’ (2019: 408). Idioms of childhood may take many forms, including drawings and other visual means (like photographs taken by children).

Children’s posters of imagined fundraising campaigns thus fall within this category. Drawings and collage can be understood as ‘practices of world-making mobilised by children […] to make sense of and communicate their encounters with and experiences of public life’ (Nolas et al. 2019: 399). Charitable appeals supporting the NHS became particularly visible during the COVID-19 pandemic, of which many of our young interlocutors had memories. Some of the posters they made in response to our prompt depicted drawings of people wearing face masks, hand washing instructions, and the NHS logo enveloped by rainbows (a recurring image during the pandemic). Personal experience of the NHS also emerged as a strong theme among participants. We know that gratitude (for care received or given to one’s loved ones) is what often compels the public to donate or fundraise for the NHS (Stewart et al. 2022: 6–7; Stewart 2023: 48). Saying thanks, or ‘giving back to the NHS’, featured prominently in several posters. One girl, for example, wrote about her gratitude for the nurses who cared for her baby brother when he was in hospital: ‘thay [sic] helped a lot he is such a miracle I would go back and say thank you for helping my brother’ (see Image 1).

Fundraising to support NHS staff was a recognisable cause for several participants, especially those who told us they had family members working for the in NHS various roles. One poster reads: ‘I love the NHS. My mumy [sic] is a scientist in the NHS’ (see Image 2).

Some children reflected on the ‘feel good’ element of taking part in charitable activity, a notion that is also prevalent (albeit contested) in wider literature on charity and voluntarism (Rochester et al. 2010; Lindsey et al. 2018: 139). Helping others by buying from a cake sale is described as a win-win situation by a participant (see Image 3).

However, children’s posters, and the conversations they had with us, were not just limited to NHS fundraising. Some incorporated other well-known charitable campaigns into their posters, showing an acute awareness of charitable activity around them. For instance, a few children referred to Macmillan Coffee Mornings (see Image 5), an established initiative across the UK used to raise funds for cancer research. One participant included a drawing of Pudsey Bear in his poster, incorporating another famous charity logo in his imagined NHS fundraising campaign (see Image 4). 

The variety of posters and conversations generated during the day confirmed that young people are actively engaging with messaging from charities in the public domain, and some are also already taking part in fundraising. Several participants included suggestions for fundraising events in their posters based on past experience, like bake sales, toy sales, or taking part in sporting events. 

Our public engagement event was a small exercise in understanding children’s views of fundraising for healthcare. There is potential for more to be done in this area. Harnessing ‘idioms of childhood’ can spotlight young people’s present perspectives and experiences of charitable fundraising, contributing to larger questions about the role it should play in funding the NHS of the future.

Acknowledgements: I would like to thank Dr Steph Haydon for the guidance provided during the public engagement event held at the Riverside Museum in Glasgow, as part of Explorathon 2023, and for the discussions that helped me shape this reflection. Thanks also to Professor Ellen Stewart for the feedback provided on an earlier draft of this piece.

About the author

Francesca Vaghi is a Research Associate at the University of Glasgow, working on the ‘Border Crossings’ project. Francesca’s recently published book, based on her doctoral research, focuses food policy and practice in the early years.

References

Lindsey, Rose and John Mohan. (2018). Continuity and Change in Voluntary Action: Patterns, Trends and Understandings. Bristol: Policy Press.

Nolas, Sevasti-Melissa, Vinnarasan Aruldoss, and Christos Varvantakis. (2019). Learning to Listen: Exploring the Idioms of Childhood. Sociological Research Online 24(3): 394–413.

Rochester, Colin, Angela Ellis Paine, Steven Howlett, and Meta Zummeck. (2012). Volunteering and Society in the 21st Century. Basingstoke: Palgrave Macmillan.

In Part 1 of the Hospital Charity takeover, Frances Williams provides a visual analysis of fundraising posters, considering the past, present, and future of charity in the NHS.

Opportunities for altruistic giving surround us online. You are probably only a couple of clicks away from a carefully-crafted appeal as you read this article. But charitable giving in healthcare is contested terrain. Marketing materials present donating to a health charity or hospital as an act of generosity, of gratitude, or even, as we saw at the height of the COVID-19 pandemic, of duty. Appeals are justified because of the good that can be achieved through fundraising. As well as acting as a safety net for unmet need, charitable and voluntaristic provision is often argued to be uniquely humane, enhancing the caring human face of care, improving patient experience, and freeing up professional staff to focus on clinical aspects of their roles. 

More critical research on charity and healthcare identifies charitable acts as indicative of the exigencies and failings of healthcare systems. Here, charitable money and roles are understood not as pro-social add-on but as the residue left behind when the organisations who should meet healthcare needs withdraw or falter. Recent research has centred unhealthy power dynamics, charitable giving, and charitable appeals, invoking familiar patterns of begging and patronage to access services which should be a human right. And patronage brings its own risks as, from Thomas Guy to Jimmy Saville, charitable ‘good works’ create opportunities for rich, powerful people to augment, or even launder, their reputations. Finding an appropriate role for charitable fundraising in healthcare raises fundamental questions about responsibilities and priorities.

While charitable income streams have long played a vital role in healthcare systems, charitable practices and institutions also have particularly complex relational consequences. In the UK, one of the foundational texts of this field is Richard Titmuss’s The Gift Relationship: from human blood to social policy (2019). This empirical comparative study of voluntary and commercial blood donation in the USA and the UK sought to explain some of the risks when market principles ‘crowded out’ non-market norms in the blood donation system. It is deeply imbued with Titmuss’s personal social philosophy, centred on the importance of altruistic acts in strengthening societies, and an often entertaining hostility to the economists who offered critiques of his work. He was an enthusiast for the work of anthropologist Mauss on gifts, arguing that “customs and practices of non-economic giving – unilateral and multilateral social transfers – may tell us much… about the texture of personal and group relationships” (2019: 54). 

Our takeover

In this Polyphony takeover, curated by researchers from a Wellcome Collaborative Award on charity and the NHS since 1948 in the week of our closing project conference, we explore the texture of these relationships through a selection of contributions on the social and cultural dynamics of charity and healthcare across place and time. 

We begin with a series of contributions from, or responding to, the work of our own research on charity and the UK NHS. Frances Williams offers a visual analysis of our timeline of fundraising posters for hospitals. Francesca Vaghi reflects on public engagement events with children in Glasgow, and on the insights and priorities children shared for the NHS, and how to fund it. Hannah Blythe shares a photo essay of 1970s hospital administrators use of visuals to communicate their spending of charitable funds to enhance healthcare in Sheffield, reflecting on the imagined communities of these reports during a period when NHS hospitals were mostly not actively fundraising, but spending down pre-NHS endowments. Agnes Arnold-Forster explores archival traces of the Royal Family’s longstanding connections to Great Ormond Street Hospital. 

Finally, we are delighted to expand our focus beyond the UK, with two contributions focused on charity and healthcare elsewhere. Fanny Chabrol’s photo essay offers critical ethnographic reflections on the charitable configurations around two hospitals, one in ruins and one newly built: New Orleans’ former Charity Hospital and Butaro Cancer Hospital in Rwanda. To close the takeover, Nora Kenworthy shares affecting ‘found poems’ composited from her decade of researching medical crowdfunders in the USA.

This eclectic group of contributions showcases some of the complex relational dynamics which charity introduces or amplifies within healthcare. We invite engagement with health charity as an entry point to fundamental debates on fairness, accountability and power in health systems.

About the authors

Ellen Stewart is a social scientist working at the intersection of medical sociology and health policy. She is Professor of Public Policy & Health at the University of Glasgow, and is one of the grantholders on the Border Crossings  Wellcome Trust Collaborative Award.

Francesca Vaghi is a Research Associate at the University of Glasgow, working with Professor Ellen Stewart on the Border Crossings project. She has a background in medical anthropology, childhood studies, and anthropology of policy. 

References

Titmuss, Richard. 2019. The Gift Relationship: From Human Blood to Social Policy. Bristol: Policy Press.

Author

Ellen Stewart, University of Edinburgh.

The tiny, twin prop plane landed at Sumburgh Airport in Shetland and we boarded the bus into town. It felt like an odd quasi-homecoming; the familiar made ineffably strange. Shetland is an archipelago of islands sitting in the middle of the North Sea. My Mum is a Shetlander and my extended family are still there; I’ve visited since childhood. Author Mallachy Tallack writes that the islands’ location at sixty degrees north — famously closer to Oslo than London — “is a story that we tell, both to ourselves and others. It is a story about where – and also perhaps who – we are” (Tallack, 2015, p. 3). While geographically isolated, Shetland is in the middle of a renaissance, not least thanks to the popular BBC drama series Shetland. I had landed in the middle of ‘Wool Week’ 2019: a major international event attracting passionate knitters to learn, admire and spend money on Shetland’s famous wool and traditional knitting (maakin, in the local dialect). It is big business for these far-flung and sparsely populated islands. The hotels were nearly full, and cafes, pubs and streets were busy with groups of enthusiastic North American visitors.

Johnson (2018) observes that Shetland has long been “a particular favourite” of social scientist visitors, too. Erving Goffman’s PhD thesis was based on covert fieldwork in Shetland’s most Northerly island, Unst, and the islands have continued to fascinate researchers. Social structures are distinctive in these close-knit, geographically remote communities, with a population of 23,000 people spread across 16 inhabited islands, including both locals (defined across generations, not just years) and abootcomers (everyone else). Having grown up ‘sooth’ (in mainland Scotland), my visits over the years have always contained the ambivalence of not-quite-outsider-ness. I’m a ‘soothmoother’ (not speaking Shetland dialect) but can understand well enough to get by. As an auntie once explained me to a shopkeeper: ‘no need for knappin (speaking English words) for her’. There has been significant inward migration to the islands in the last decades, but Shetland retains a truly exceptional degree of what we’d now recognise as social infrastructure (Kelsey & Kenny, 2021). There remains an extensive range of community events in local halls all over the islands. These dances, teas, quizzes and celebrations are organised, catered and run by local people, and often raise money for Shetland causes.

My own visit was fieldwork around a series of fundraising events being put on by a local maakin group, with all proceeds going to NHS Shetland’s campaign to buy an MRI scanner for the islands. One of the fundraisers had joined the campaign having experienced the “long, gruelling” journey to Aberdeen for scans every 3 months for several years. Shetland’s population doesn’t justify an MRI scanner based on NHS Scotland calculations, and so patients are transported either by airplane or on the overnight 12.5 hour ferry crossing to the hospital in Aberdeen. Their travel costs are reimbursed, but everyone I spoke to described the disruption to family life and work, and also the discomfort of these journeys. That evening, I sat in the corner of a hall with knitters, while we all drank tea, and ate soup and filled bannocks. I have neither inherited nor cultivated my maternal relatives’ formidable knitting skills, and, taking pity on me, one woman put me on pom pom making-duty with a small plastic gadget and strict instructions.

The MRI Maakers fundraising evening had many of the familiar tropes of Shetland community events, some of which Goffman observed 70 years ago. Fold-up tables and chairs were organised around the edge of the room. A cooperative squad of organisers filled huge metal teapots, sliced bannocks and served out salty reestit mutton soup, then cleared it all away and washed up in the kitchen. It was never clear to me that anyone was in charge, although everyone seemed to know who to ask if they had questions. A raffle was held, in which a huge number of donated items were announced in no particular order and interminably slowly. I have proud memories of winning a small electric toaster when I was 8, at just such a raffle. There was a familiar background buzz of companionable gossip, and many, many women knitting as they chatted. This crowd was  different, however: at least half of the attendees in the packed hall were visitors who (like me) had bought tickets that would help fund the MRI scanner. Lerwick’s Jarl Squad (from the Viking-inspired Up Helly Aa Festival held each January) turned up in full regalia for photo opportunities with excited tourists.

This busy public event was at a remove from how the MRI Maakers started out, in the basement canteen of the local hospital. One fundraiser explained how the MRI Maakers occurred to her:

“When I was growing up, if you needed anything extra, then you just got out your knitting. And you knitted, to get extra money… And like, when I was growing up, probably the main things was knitting, fishing, or crofting. And my mum, sometimes literally, needed to knit to put food on the table. So it just was natural for me to think, well why does everybody not just get out their knitting and try and raise extra money that way?”

She had started attending local craft fairs and events to sell pieces of knitting, then someone from the NHS MRI campaign suggested she design a Fair Isle knitting pattern and sell it for the campaign. One family member created a PDF pattern for her design (even though “Shetlanders never usually work with a pattern”) and a website to sell both patterns and donated finished knitwear. Then, as the pattern became more popular than expected, another family member who worked in the Lerwick hospital suggested a regular knitting group. 

“maybe we’ll start a maakers group, that might be an idea, right enough. So we started the maakin group in May. The Wool Brokers and Jamieson of Shetland donated wool, so we don’t have to buy any wool, it doesn’t cost us a penny. We had our maakin group, we meet every second Thursday, in the canteen of the hospital, from six o’clock ‘till late, at night.”

The pattern has been downloaded (with 100% of the fee to the MRI Scanner appeal) all over the world, reflecting the ongoing global appetite for Shetland knitting (Carden, 2019). The fundraiser I attended was a special ticketed event hosted by the MRI Maakers group for Wool Week, as an alternative to their usual canteen meeting.

Knitting followed me around in my visit to the islands. In Shetland, knitting is a pervasive activity, and a significant marker of cultural identity (Carden, 2019). The morning after the fundraiser, I visited the hospital where the maakin group met. I was there to visit another of my Aunties, then nearing the end of her life following several years living with cancer. She lay supine in the bed to avoid the pain of sitting up, a barely touched hospital meal pushed to one side, declaring herself “bored shitless and wanting home”. I sat by her bed and we talked about family, and then she told me dirty jokes that made me laugh inappropriately loudly for a ward environment. Throughout, apparently effortlessly, she knitted. The quiet click of the needles low down on her stomach was a background hum to our conversation, and she never needed to hold up the needles to check a stitch. Those jokes and the background of her perfect, constant knitting are my last memories of spending time with her.

I was, after all, in Shetland to work. The MRI Maakers are mobilising knitting as a central “identity vector” of Shetlandness (Carden, 2019) for their cause. Through their pattern and knitwear sales, they have contributed large sums to the Scanner Appeal directly, as well as generating global publicity for the cause. At the time of writing, the MRI appeal as a whole had raised 85% of the £1,650,000 needed for the scanner. Existing academic analyses of crowdfunding for healthcare focus on individuals trying to raise money for novel or unaffordable treatments, and often emphasise the risk to health inequalities when care entitlements depend on popular perceptions of deservingness. While surely there is some ambivalence across the community, those I spoke to were unconcerned by the need to fundraise for what is elsewhere a tax-funded service. Shetlanders are accustomed to their remoteness from services that are proximous for other populations, and fundraising seems hardwired into these close communities. When I asked an NHS manager how the appeal had started she explained:

“[A colleague] asked, can’t you do something for a scanner, we are so desperate for one, and it was mentioned. And the next thing – it was so quickly grabbed that it kind of almost just spontaneously grew into a bigger thing.  It was never really properly thoroughly discussed, it just grew.”

There was, of course, a bureaucratic business case and a plan for how NHS Shetland could meet the ongoing running costs of the scanner, based partly on cost savings from patient travel to Aberdeen. But fundraisers I spoke to had relatively little interest in these practical aspects of the campaign. Their descriptions of process emphasised the events not as a material means to an end, but as great fun. The maakin knitted community and connection, as well as hats. The maakin group, and their offshoots in care homes and on other islands, sounds like something dreamed up by a public health project looking to combat isolation. The anomalous creation of a formal pattern engaged knitters untrained in the Shetland approach (generally handed down through oral tradition) and in so doing brought money and more attention to the islands.

These connections surely contain many continued exclusions, as mobilisations of community always do. In their study of patients crowdfunding for their own access to experimental cancer drugs, Kerr et al (2021, p. 189) describe the fundraising as “practices of private patienthood… creating and breaking down solidarities in novel and important ways”. These solidarities are even more complex when the collective effort of fundraising is directed towards a collective goal, to improve, and not to circumvent, ‘standard’ NHS care. Charitable money has a long, complicated history in UK healthcare, which has been greatly magnified in the last year (Harris & Mohan, 2021; Stewart & Dodworth, 2020). But in our rush to assess its consequences for the collectivisation or privatisation of healthcare, it seems important to pause and note the processes along the way.    

For now, I can theorise community action but I still can’t knit. The morning of my return journey from Shetland, I got a message from the ferry operator to say the boat was leaving two hours early to avoid a coming storm. On the way to the ferry terminal, I bought my very own pom pom gadget, and my Mum found a mixed bag of ends of wool in a charity shop. We boarded the ferry, I fed my kids some seasickness pills and hunkered down in our cabin to make pom poms while the boat rolled onwards past the headland.

Acknowledgements: Fieldwork was funded by the Carnegie Trust for the Universities of Scotland. The MRI Maakers website is raising funds for NHS Shetland’s MRI Scanner Appeal.

References

Carden, S. (2019). The Place of Shetland Knitting. TEXTILE, 17(4), 357–367. https://doi.org/10.1080/14759756.2019.1639416

This blog was first published on The Polyphony website under a  CC BY 4.0 license

Authors

John Mohan, University of Birmingham and Bernard Harris, University of Strathclyde.

After the recent death of Captain Sir Tom Moore, outpourings of appreciation for his commitment to raising funds for the NHS during the pandemic have come from every corner of the UK.

Moore inspired people of all ages and from all backgrounds to give to charity. However, the scale of the funds raised – around £150 million – has also prompted questions about the role of charitable funding for the NHS.

Moore was one of a diminishing number of people with direct experience of the pre-NHS healthcare system. As a second world war veteran, he understood the risks and sacrifices ordinary people made at that time. These sacrifices directly influenced post-war promises to build a new and better Britain, including providing people with the security of a comprehensive health service.

Funding in the early days of the NHS

Before the NHS came into being, health services depended on what Aneurin Bevan (the first post-war minister of health) described as the “caprice of private charity”, where people’s chances of being treated by a voluntary (charitable) hospital varied fivefold between local authorities.

The NHS’s efforts to reduce unequal access in the post-war period were financed through taxes, national insurance and fees for some services. Charity played a largely marginal role.

Donations to NHS institutions were never formally banned. However, from the birth of the NHS until 1980, health authorities weren’t allowed to raise funds because it could lead to unbalanced service provision if some regions were able to raise more funds than others. The guidance suggested that gifts of money and equipment could be accepted, but charity shouldn’t be used to pay for items related to direct patient care, which was the government’s responsibility.

From 1980, restrictions on fundraising by health authorities were relaxed as part of initiatives by the Thatcher government to promote greater community support for public services. Since then, the NHS has seen more fundraising, but the outpouring of support since 2020 is unprecedented. Moore’s efforts encouraged fundraising across all ages, from 98-year-olds to young children.

Donations: a blessing or a curse?

Fundraising has divided opinion among a number of camps. One widely held view is that using charity for resources and staff and patient comfort is acceptable, which is broadly the NHS’s official position. However, some argue that supporting staff wellbeing is a public responsibility, which should include providing decent wages and working conditions without any need for charity. Others in favour of raising charitable funds to support healthcare service provision would remove restrictions on the use of donations altogether.

To put the issue in context, it’s worth summarising how much money is raised for the NHS through charities directly associated with individual NHS Trusts (the principal providers of healthcare).

When Moore launched his appeal, he stipulated that donations should go to an umbrella organisation called NHS Charities Together. The organisation is responsible for coordinating most of the funds generated by charity for the NHS and has over 200 member organisations.

Before the pandemic, these organisations were spending close to £500 million a year on NHS support. Even so, these sums don’t even add up to 1% of total public expenditure on healthcare in the UK. At best, this funding serves as “added extras” to the existing tax-funded system.

However, while many NHS charities are small in financial terms, that’s not the case for all of them. As Ellen Stewart, social studies of health and medicine researcher at the University of Edinburgh, has pointed out, they should not be dismissed as being marginally significant.

NHS charitable funds are spread very unevenly among communities and sectors of the NHS. Some major London teaching hospitals have received some of the largest donations of any British charity, and a number of NHS charities spend over £10 million a year.

There are also differences in the fundraising potential of different sectors of care. Charities associated with mental health or community health services generally receive far less fundraising income, which has led researchers to question how well charitable fundraising is aligned with health priorities. Despite substantial contributions to specific NHS institutions, less fortunate organisations or communities can be left out.

It’s possible that any increase in charitable giving may concentrate resources on parts of the NHS that are already well resourced. This isn’t a new issue. In 1848, political philosopher John Stuart Mill stated that “charity always does too much or too little. It lavishes its bounty in one place, and leaves people to starve in another.” The challenge for the NHS is balancing aspirations for providing equal access to care with the inequalities that arise as a result of voluntary fundraising.

There’s also the vexed issue about whether NHS fundraising is paying for services and facilities that should be the responsibility of the state. For many years, commentators have questioned the potential blurring of the line between supporting amenities and welfare on one hand and paying for core services on the other.

NHS staff receive public support because they’re working against the most dangerous threat to the nation since the second world war. But the public’s commitment to fundraising shouldn’t be seen as approval for transferring responsibility from the taxpayer to charity. If anything, recent events have reinforced public support for the NHS remaining a state-funded service for the entire population. The government should be very wary of assuming that support for appeals like Moore’s indicates otherwise.

John Mohan, Director, Third Sector Research Centre, University of Birmingham and Bernard Harris, Professor of Social Work and Social Policy, University of Strathclyde

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Authors

Ellen Stewart and Kathy Dodworth.

The fundraising of Captain Tom Moore and many others during the coronavirus outbreak has propelled charitable giving to the NHS into the public eye. At the time of writing, NHS Charities Together had raised over £100 million for its emergency Covid-19 appeal “that acknowledges and supports NHS staff and volunteers caring for COVID-19 patients”, with over £32 million of this raised by Captain Moore’s sponsored walk alone. However, this feat has also prompted a backlash in some quarters, including concerns that donations are masking underlying long-term underfunding of the NHS, and that philanthropic giving more generally has deleterious democratic consequences. Both the unprecedented scale of this fundraising, and the pressing question of how the money will be spent, need to be understood in their historical context, and within wider debates on the ‘mixed economy of welfare’ and the role philanthropy can and should play in meeting public needs.

A first point is simply to contextualise the fundraising within total NHS budgets. Comparative figures with other countries vary depending on how much social care and long-term care is included, but the UK spends about an average amount of its GDP on health compared to other European health systems. Nonetheless, the figures can be startling in black and white: in 2017 the UK as a whole spent £197 billion on healthcare. That makes £100 million look less like a threat to the taxation-based funding of the NHS and more plausible, as NHS Charities Together argue, as an embellishment of ‘added extras’ to the existing tax-funded system.

Second, NHS charities are far from new, and certainly not a vehicle created by the current Westminster Government to advance the creeping privatisation of the NHS. Many have existed since the creation of the NHS, and often grew out of charitable funds that predated it. In one speech Bevan declared that the fledgling NHS needed “all the voluntary help we can get”. In practice, charity was strictly limited (in another speech he declared it “repugnant to a civilised community for hospitals to have to rely upon private charity”) but the charitable endowments remained in existence and some grew. That is not to say that they have not changed over time. NHS fundraising has always been a fairly vexed policy issue and governmental enthusiasm for the NHS charities has waxed and waned along with concerns about the governance of the charities. More generally, the NHS has rarely been a monolithically tax-funded healthcare system. The briefest glance at the financial position of hospice care in the UK, for example, puts paid to the idea that as a country we are outraged by vital services relying on charitable pounds.

Third, some of the debate about NHS charities has become embroiled in wider debates about ‘big philanthropy’, with key advocates of organisations like the Gates Foundation defending their role, while others critique their unaccountable power in the world as a threat to health governance worldwide. Far from being excessively influential, NHS charities, with the exception of a handful of the major teaching hospitals, are tiny, local charities. ‘NHS Charities Together’ operates as an umbrella organisation with a small staff. That doesn’t mean we shouldn’t question the governance of these significantly increased funds, but that we should distinguish the right questions to ask.

There are valid critiques of the role of charities within the NHS. The funds are spread very unevenly across the country in geographical terms. The big London teaching hospitals function with large historical endowments and few others outside the capital can compete with their brand awareness. There are also differences in the fundraising potential of different sectors of care, such as mental health trusts or addiction services. This is especially problematic when we consider the potential of charitable donations in England’s fragmented NHS, as compared to the Welsh, Scottish and Northern Irish territorial boards. This inequality also exists, of course, beyond the narrow parameters of what has conventionally been seen as ‘the NHS’. We should ask why social care services (almost all run by the private sector) and indeed, preventative public health measures tackling the wider social determinants of health, languish without nearly enough funding from any source. In the last few weeks we’ve seen repeated calls to enlarge our ‘clap for the NHS’ towards a more expansive ‘clap for carers’. However the financial corollary of this doesn’t exist for social care. NHS Charities Together, who launched their first ever nation-wide fundraising campaign in 2018, has been perfectly placed to capitalise on current public outpourings of gratitude for ‘the NHS’.

‘The NHS’ stands in, as it always does, as placeholder for a myriad of public hopes, fears and thanks in our current crisis. Reflecting on #clapforcarers last week, Gary Younge eloquently centers the role of Black and Minority Ethnics immigrants in sustaining and dying working in the NHS; “clearly, we’re not all clapping for the same thing”. A recent paper by Des Fitzgerald and colleagues explores the role of the mythologised NHS in the 2016 Brexit campaign. In order to understand the meaning and consequences of current exceptional patterns of public donation to the NHS, we will need to explore the work of NHS charities in practice, and how members of the public understand the cause to which they are donating. A new Wellcome Trust Collaborative Award, granted before the covid crisis but now more pressing than ever, seeks to do just that. Starting this autumn, we will take a wide historical lens and draw on insights from a range of disciplines across the social sciences and humanities to rethink the past, present and indeed future of charitable giving in the NHS.

This blog was first published on the Cost of Living website