Doing 'our bit': Solidarity, inequality, and COVID-19 crowdfunding for the UK National Health Service.

The expanding phenomenon of crowdfunding for healthcare creates novel potential roles for members of the public as fundraisers and donors of particular forms of provision. While sometimes interpreted as an empowering phenomenon (Gonzales et al., 2018), or a potentially useful communication of unmet needs (Saleh et al., 2021), scholars have predominantly been critical of the way in which crowdfunding for healthcare normalises unmet needs and exacerbates entrenched inequalities (Berliner and Kenworthy, 2017; Igra et al., 2021; Paulus and Roberts, 2018). We report a thematic analysis of the text of 945 fundraising appeals created on JustGiving and GoFundMe in the first months of the COVID-19 pandemic, where the recipient was NHS Charities Together's dramatically successful COVID-19 Urgent Appeal. Unlike in existing accounts of individual healthcare crowdfunding, we identify the relative absence of both coherent problem definition and of a fundable solution within the pages. Instead, appeals are dominated by themes of solidarity and duty during the UK's 'hard' lockdown of 2020. A national appeal reduces the risks of crowdfunding exacerbating existing health inequalities, but we argue that two kinds of non-financial consequences of collective crowdfunding require further exploration. Specifically, we need to better understand how expanded practices of fundraising co-exist with commitment to dutiful, means-based funding of healthcare via taxation. We must also attend to how celebration of the NHS as a national achievement, might squeeze spaces for critique and challenge. Analyses of crowdfunding need to explore both financial and non-financial aspects of practices within different health system and historical contexts.

Introduction

In the early months of the COVID 19 pandemic, radical uncertainty created windows of opportunity for novel societal roles to emerge within health systems. Many health professionals were thrown into extreme ‘disaster’ working conditions on what is routinely now described as ‘the frontline’. Meanwhile, much of the population was ‘locked down’ at home by emergency measures to control the spread of the virus. This remarkable situation yielded unusual experimentation and mutual aid, including what Erikainen and Stewart (2020) refer to as ‘DIY coronavirus responses’ from citizens. In the UK this included explicit and implicit public discourse around the ‘homefront’ during World War Two, and the National Health Service was recast as a contemporary national defence force. This culminated in the remarkable efforts of elderly veteran Captain Tom Moore, who fundraised by walking laps of his garden (Maynard, 2021). Captain Tom, unknown to the wider public before the pandemic, eventually raised £33 million for NHS Charities Together (NHSCT), a hitherto little known although longstanding organisation supporting the UK National Health Service via local member charities. This contributed towards an unprecedented £150 million total raised for NHSCT's COVID-19 Urgent Appeal. For context, the first large-scale national fundraiser the organisation ran in 2018 raised £250,000. While including some corporate fundraising (NHS Charities Together, 2021), the driving mechanism of this appeal was individual crowdfunding appeals through key platforms. This article reports a thematic analysis of the textual content of 945 pages created in the first three months of the pandemic in the UK. We explore the ways in which page authors expressed their understanding (and sometimes misunderstandings) of both COVID-19 and the NHS as deserving causes. We draw on recent scholarship on the “new cultural scripts” (Igra et al., 2021) generated by healthcare crowdfunding, to interrogate this sudden upsurge of charitable fundraising for what is generally understood as the archetypal taxation-funded health system (Frisina Doetter and Götze, 2011).

Background: crowdfunding, charity and the NHS

One of the ‘founding principles’ of the UK NHS is its funding through progressive taxation (Ruane, 1997). Nonetheless, creating opportunities for altruistic donation within the health system has been argued to be generative of solidarities which make a tax-funded system sustainable (Titmuss, 1970/2018). Charitable fundraising for the NHS is a long-standing phenomenon (Mohan and Gorsky, 2001) which both increased and changed significantly during the COVID-19 pandemic, driven by NHSCT's Urgent COVID-19 Appeal. NHSCT is an association of around 240 local NHS charities across the UK, which supplement core tax-funded services with charitable funding (NHS Charities Together, 2022a). Formerly known as the Association of NHS Charities, the membership organisation gained charitable status in 2008, and rebranded in 2019, with a significantly more public-facing strategy (NHS Charities Together, no date). While the four UK National Health Services (in England, Northern Ireland, Scotland and Wales) remain tax-funded, with most services free at the point of use for all citizens, this strategy marks a new commitment to national level fundraising for ‘the NHS’, over and above local campaigns to support particular hospitals (Paine et al., 2019).

The NHSCT COVID-19 appeal was dramatically successful. An online blog by charity consultants brought in to support the appeal describes a spontaneous “groundswell of love and support for the NHS” (More Partnership, 2020) in early March 2020, prompting NHSCT to launch an appeal on the day the nationwide lockdown was announced. NHSCT Chief Executive Ellie Orton stated “but we were not a fundraising organisation and we were inundated with 100,000s of enquiries from people wanting to do things for us … Our website was overwhelmed” (Brindle, 2020). In a few months, the charity's staff team of 4 increased to 25, and by 2021 the appeal had raised £150 million (‘NHS Charities Together, 2021). The apparent spontaneity of the UK population's financial support for the NHS appeared in a context where public affection for the NHS goes beyond (and sometimes excludes) consumeristic satisfaction: for Fitzgerald et al. (2020) the NHS is a “repositor[y] of weepy national sentiment”; Stanley (2022) identifies it as “a founding myth of post-imperial Britishness”; for others it is a national religion or intrinsic part of national identity (Burki, 2018; Elkind, 1998; Klein, 2012). Alongside this public sentiment, the performance and funding of the NHS is often the subject of fierce party political contestation (Rimmer and Iacobucci, 2019).

The NHSCT COVID-19 appeal also flourished in a wider international context of healthcare crowdfunding popularity, facilitated by new online platforms. Scholars have measured the scale of COVID-19-related online crowdfunding, particularly in the US (Saleh et al., 2021), and comparing USwith non-US pages (Rajwa et al., 2020). These studies note the significantly high number of fundraising pages created early in the pandemic, and offer some descriptive reflections on their respective foci. Saleh et al. note a sharp spike in new COVID-19 related pages, which subsequently declined as “the novelty of these campaigns wore off”: they interpret this as indicating “a reactionary, affective community response” (Saleh et al., 2021). These descriptive studies offer fairly positive – or at least uncritical – analyses of the role of COVID-19 crowdfunding, suggesting that it “provides a dynamic opportunity to understand relief needs locally” (Rajwa et al., 2020) and “an early signal for emerging needs and societal sentiment for communities in acute distress that could be used by governments and aid organisations to guide disaster relief and policy” (Saleh et al., 2021). This is similar to the approach taken by Lublóy's (2020) study of crowdfunding in Germany, where community-generated campaigns are interpreted as markers of geographic or clinical unmet need.

Sociological analyses of crowdfunding for individual healthcare needs have focused on the dynamics of fundraising as a social practice. Fundraising platforms are interpreted as stages on which illness narratives are performed, specifically combined with narratives of the individual's good character and worthiness (Berliner and Kenworthy, 2017; Kenworthy, 2021; Paulus and Roberts, 2018). Discursive strategies to promote the deservingness of a cause (Kerr et al., 2021a) can create a burden on already sick individuals, who are required to prove their legitimacy and their gratitude (Kenworthy, 2021; Kerr et al., 2021a). While much of this literature is highly critical, it is also acknowledged that fundraisers may find the process generative of new solidarities (Kerr et al., 2021a). Some scholars have gone further, identifying the positive social support that crowdfunding can generate for fundraisers, alongside a potentially “empowering” identity shift as fundraisers share their vulnerabilities to increase awareness of their conditions (Gonzales et al., 2018).

In recent years the focus of this scholarship has expanded from analyses of the individual practices of healthcare crowdfunding, to critical assessment of the role of the digital platforms which invite and curate the campaigns. Kenworthy (2021) highlights the choices fundraisers make, from a culturally-circumscribed set of options, in order to demonstrate their worthiness, but additionally interrogates how the platform's algorithm mobilises affective prompts (‘likes’, hearts and claims about it being “powered by kindness”) to shape fundraiser and donor actions. She concludes that GoFundMe “alter[s] the way that our societies recognize and validate the needs of others”(Kenworthy, 2021). Igra et al. (2021) augment a quantitative analysis of campaign success in the US with in-depth analyses of fifty successful campaigns. They identify that as many as 40% of COVID-related GoFundMe pages in the USA raised no money, and link pages with area data to argue that successful pages are disproportionately from geographical areas with high income and high levels of education. They conclude that the platform “profits from a crisis it is ineffective in ameliorating” (Igra et al., 2021).

The strength of critique within US-based studies stems in part from the role of crowdfunding as a last, desperate course of action in a system which remains an outlier among high income countries for both its health spending, and its entrenched inequalities in access (Gutin and Hummer, 2021; Michener, 2018). By contrast, while still highly critical of the demands of “entrepreneurial patienthood” (Kerr et al., 2021) and the risks of commodifying healthcare (Dressler and Kelly, 2018), studies in more equitable systems have tended to depict healthcare crowdfunding as one tactic alongside other activism. Individual healthcare crowdfunding in the UK has mostly been in pursuit of novel treatments which have not yet been assessed as cost-effective and affordable by the NHS, or because of long waiting times for treatment (Burn-Murdoch, 2022; Coutrot et al., 2020). It is, then, often part of a wider picture of advocacy, campaigning and legal action to secure particular treatments (Kerr et al., 2021b). In a defence of the importance of both historical and health system context when studying crowdfunding, Wardell (2021) argues “the subjectivities of medical crowdfunders in Aotearoa New Zealand were visibly shaped by the specific biopolitical regimes of New Zealand's lockdown”. Healthcare crowdfunding is therefore not a single phenomenon across time and place, and context is highly significant (Saleh et al., 2020).

Extant literature on healthcare-related crowdfunding has thus described trends in the causes fundraised for, traced complex performances required by fundraisers to raise money for healthcare via platforms, and has identified how inequalities (in social capital, and in social networks) significantly shape both user experiences of the platforms, and their likelihood of success. More recent work has also explored how the platforms themselves invite, shape and skew the success of different appeals. In this paper, we investigate the unusual case of collective fundraising for the UK's National Health Service in the early months of the COVID-19 pandemic, through an analysis of the textual content created by public fundraisers on crowdfunding pages.

Methods and data

We conducted a qualitative analysis of 945 JustGiving and GoFundMe pages created to fundraise for the NHSCT Covid-19 Urgent Appeal. The documents contain both text and images, but we focus on their textual elements. We sought to provide the richness of a thematic analysis without resorting to sampling from the population of pages, feasible because of the short word length on most pages. Data collection took place between mid-May and mid-June 2020, during the UK's first national lockdown in response to the COVID-19 pandemic. Accordingly the data is a snapshot of what we now know to have been the early months of the prolonged COVID-19 pandemic. The research received ethical approval from University of Edinburgh School of Social and Political Science Research Ethics Committee. All the JustGiving and GoFundMe pages were available online, within the public domain, and therefore not requiring written consent to analyse. However, we are sensitive to ethical concerns regarding identifiability of participants in this project (McKee and Porter, 2009). Accordingly we have redacted individual names or images from data reported in outputs. Furthermore, where we use quotations, these may have been altered to avoid their identification via reverse searching. Finally, care has been taken where reporting pages referencing sensitive issues such as the death of a named individual.

The dataset is comprised of pages downloaded using Nvivo's NCapture facility from the two biggest crowdfunding platforms in the UK: Justgiving (the ‘official’ platform for the NHS COVID-19 Appeal); and GoFundMe. Due to the distinctive algorithms and search functionality deployed by these two platforms, we used different approaches to identify pages. JustGiving tailors its personalized algorithmic configuration (what they call ‘GiveGraph’) to individual users by capturing users' activity such as their liking causes or acting in response to items in the ‘feed banner’, as well as click stream data (page visits, device type, and time on the website) and transactional data (data about actions like creating a page or donating). For Justgiving, we captured 633 unique JustGiving fundraising pages by using the search phrase ‘COVID OR coronavirus “NHS Charities Together” site:justgiving.com’ on Google Search. We used Google Search because JustGiving's own search affordances are less sophisticated, and opaque due to the GiveGraph function. A Google search allowed us to note new fundraisers over time, as https links embedded within search results change colour once clicked into. It was only possible to access 31 pages of search results on any query before the platform cut off the search. Thus, we repeated the same query weekly for four weeks, to identify unique pages. GoFundMe is a more curated platform (see Coutrot et al., 2020), where pages are given additional exposure where fundraisers have carefully and thoughtfully filled out every relevant section, shared it to their social networks, and been proactive in updating the page as the campaign proceeds. We captured 433 unique GoFundMe fundraising pages via NCapture. A Google search was less effective in identifying NHS fundraisers on this platform due to other website content. Instead, we used the platform's search feature and applied the same criteria as for JustGiving. This had the advantage of giving additional confidence that we captured most of the results but made it more challenging to keep track of links already captured in earlier searches, which required additional vigilance.

Having created the full dataset, we excluded any pages where NHSCT was not a recipient, identified by their registered charity number. This excluded a number of pages where ‘supporting the NHS’ was a more vague goal without clear information on the financial route. This left a total of 945 pages. Initial familiarisation with the data led us to shift from a more deductive focus on expressed motivations for fundraising for the COVID-19 appeal, to instead explore how pages characterise the NHS and the pandemic as a worthy cause for charitable giving. This reflected our sense, discussed more below, that motivations expressed by individuals were frequently vague, often without communicating a clear sense of how fundraising may make a difference to the NHS's response to the pandemic. Instead, fundraising was frequently positioned on these pages as a means of simply doing ‘something’ in the face of the new threat of COVID-19.

NVivo was used to code the textual elements of the full population of pages captured. Braun and Clarke's six phase guide in thematic analysis was used to generate codes from the data and to subsequently identify themes across the dataset. Thematic analysis was chosen as the method of data analysis as this approach both provides flexibility alongside theoretical freedom and, given author 2's role in the analysis, is a suitable method for those with minimal prior experience in carrying out qualitative research (Braun and Clarke, 2006). The Justgiving dataset was initially coded by author 2 (an undergraduate Medical student studying an intercalated degree in Bioethics, Law and Society) and the Go Fund Me dataset by author 3. There were strong resonances between the inductive codes, and following discussion between authors 1, 2 and 3, we agreed a deductive coding framework which was then applied to a combined dataset, with ongoing refinement. While we had all lived through the same lockdown in the UK in which these pages were created, our positionality as regards the topic varies. Author 2's position as a current medical student meant they were particularly attuned to themes of healthcare funding (and underfunding) as a future NHS employee, as well as to the rhetoric of staff heroism. Authors 3 and 4 are not British, and therefore particularly attuned to elements of nationalist rhetoric and war metaphors within the texts. These were generative differences: Authors 1, 2 and 3 met regularly during data analysis to discuss the emergent coding structure from these distinct subject positions, and we did not find them to generate significant or outstanding disagreements in interpretation.

Our analysis has a number of limitations. We do not compare the relative financial success of different individual pages, and nor do we supplement the analysis by, for example, analysing who fundraised and why. Our data collection method relied on snapshots of campaigns (pages might have been created that day or live for weeks), which did not allow for meaningful financial comparison. However, the relative effectiveness of different pages is less pertinent when the goal is a collective campaign: our interest was in how fundraisers described the cause and their own contribution to it. Given the limited availability of data from the two platforms, categorising fundraisers in terms of their demographic characteristics would have required us guessing individual characteristics from text and images. We prioritised thematic analysis of a large number of pages over, for example, pursuing qualitative interviews with a sample of page creators. Crowdfunding studies have demonstrated that interviews add depth and context to the stories presented on fundraising pages (Kenworthy, 2021; Kerr et al., 2021b). However the NHS COVID-19 appeal is distinct from personal crowdfunders where intimate details of people's lives are shared (Berliner and Kenworthy, 2017; Kerr et al., 2021b). As we will go on to demonstrate, crowdfunding pages for the NHS were mostly strikingly impersonal, and qualitative interviews may have required people to speak seriously and deeply about a topic which, in practice, was a more passing thought (Eliasoph, 1998).

Results

Fundraising approaches

The pages analysed included a range of sponsored activities and fundraisers, often undertaking a physical challenge. Many of these were ‘equivalent’ challenges that could be accomplished within contemporary restrictions on being out of the home for daily permitted exercise (“we worked out that if we go up and down our stairs at home 50 times a day (each) for 13 days, we will have climbed the 1345 m height of Ben Nevis”). One notable subset of pages (around 10% of the total) featured touching stories of children fundraising for NHSCT, often written using children's own (or childlike) words, although all pages had to be created by an adult:

“I’m stuck at home doing home school while a terrible virus out in our world and it’s scary. My stepdad is recovering from COVID-19 … I'm raising money in aid of NHS Charities Together /Association of NHS Charities and every donation will help. Once I’ve hit my target I promise I will shave my hair all off.”

More common were runs, bike rides, or ‘sit up’ challenges, often explicitly referencing Captain Tom Moore's efforts as inspiration. At least 40 pages explicitly referenced being inspired by Captain Tom Moore: “If we smash the distance we will not stop – Captain Tom Moore didn't, so neither will we!”. The tone of such pages was therefore celebratory, in contrast to the narratives of suffering which often characterise healthcare crowdfunders. Where tales of deservingness do feature, they are inverted to focus on those fundraising, rather on the cause.

“[Katie] who has Cerebral Palsy and a brain malformation, has been going out on daily walks for her exercise, using her splints and walker. She has gradually managed to increase her distance up to around one mile per walk, which, for her, probably feels like she has run a marathon each day. In these difficult times, following discussion with [Katie], we have decided that it would be a good idea to use her achievements to help others.”

The deserving and impressive story is of the fundraiser, whose sacrifice and achievements are foregrounded, rather than the cause. Indeed any detail on the purpose of the fundraising cause somewhat recedes, with only a statement of NHS goodness: “The NHS is amazing. It is there for us at the most profound moments in our lives, no matter who we are or what we need.”

Especially among the earliest pages, some bore only a tangential connection to the formal fundraising appeal from NHSCT. These included pages which sought money to make something (face masks, Tshirts with motivational messages, a keepsake like a small sculpture), to be offered to deserving groups (sometimes bereaved families or hospitalised patients, but often healthcare professionals) with any residual funds to be donated to NHSCT. These, we argue, reflect the initially disorganised, grassroots approach to fundraising (both in terms of a collective understanding of what was needed, and how to meet that need). For example, one page fundraising to give a gift to bereaved families of NHS staff, proposed

“This campaign is asking for your support to make and present [sculptures] to each of their families as a small token of the nations' appreciation. This campaign is entirely not-for-profit, all funds raised will go to the creation of [sculptures] and any surplus will be donated to the NHS Charities Together.”

On this page, little focus is placed on any need or desire for the objects, but rather on the virtuousness of the sacrifices made by NHS staff and their families, and the value in repurposing objects “originally commissioned for a charitable event … now cancelled”. Pages seeking donations to fund the creation of face masks or even scrubs similarly centred the (COVID-related) untapped skills of the fundraiser:

“we have the equipment and resources to help the "volunteer army" manufacture vital PPE for the NHS, fast. As a very small business we will be giving our time, capabilities and people, along with some raw materials - however this is where we will need some help …. Any money not used for filament and fabric will be donated to NHS Charities Together.”

In supporting small businesses or the ‘bedroom production’ of items, donations were made into something tangible that promised immediate impact at a time of urgent need. However, there was considerable ambiguity in appeals regarding the allocation of funds. While the vast majority of pages clearly identified NHSCT as the sole benefactor, some split donations between different charities. Many of the pages did not distinguish between the NHS and the national charity, falsely promising that any money would “be sent directly to the NHS to help in their fight against COVID-19”. Others even implied direct cash transfers - suggesting that the “fund will go directly to the NHS workers” – when in practice support grants were paid out to member charities with discretion on how best to meet needs. Some appeals by artists who were financially affected by lockdown restrictions claimed that 50% of the proceeds would go toward the NHS or simply chose a limit, above which all proceeds would be donated. Over time (during the relatively short period of our snapshot), pages became more coherent and purposeful. In this, they were aided by the increasing inclusion of standardised text provided by NHSCT themselves.

Modular standard text

Our focus on the NHSCT COVID-19 appeal meant that pages were responses to a formal organisational campaign. Given this initiation, many fundraisers incorporated standardised text taken from NHSCT-provided materials. For some this stood alone. However more often fundraisers added their own text around this or edited the text provided. The standardised text provided by NHSCT thus has a ‘modular’ character, with multiple alternative standard texts employed sometimes in conjunction with one another. We identified seven ‘core’ standardised texts. The most common was:

“NHS staff and volunteers are doing amazing work right now in caring for COVID-19 patients.

Together, let's show our respect and gratitude as they work tirelessly in the face of the virus. It's our turn to make sure we look after them, to ensure they can keep doing their vital work.”

Less commonly this was also followed by a fuller explanation of the national campaign, including the phrase “endorsed by NHS England”, or sometimes a list of what NHSCT would do with the money from the appeal. This heavily foregrounded supporting staff and volunteers (as opposed, for example, to provision of medical equipment).

“1) Fund well-being packs/gifts for staff and volunteers on wards/departments (this could include food deliveries, high energy/protein bars/drinks, snacks, refreshments, wash kits, overnight stay kits.)”

“2) Cost of travel, parking, accommodation for NHS staff and volunteers, volunteer expenses”

“3) Other items as requested by NHS Charities that enhance the well-being of NHS staff and volunteers caring for COVID-19 patients.”

Other standardised text appeared to explain the role of NHSCT more generally, without focusing on the COVID-19 pandemic. These pages may have been created earlier in the pandemic, before campaign-specific standardised text from NHSCT was made available.

“NHS Charities Together is a membership organisation representing, supporting and championing NHS Charities.

In some cases, this left fundraisers referring, incorrectly, to the predecessor branding of Association of NHS Charities (although the pages were linked to the correct official charity number).

NHS Charities Together provides a forum for nationwide fundraising and advocacy campaigns, specialist advice and guidance, bespoke conferences and training opportunities, as well as access to online resources and support through exclusive member pages on our website.

NHS Charities Together also provides the collective voice of NHS Charities on a national scale and the impact they make.”

The use by some pages of this non-COVID 19 appeal text demonstrates the novelty of the campaign within the broader landscape of charity in the NHS. NHSCT was not, prior to COVID-19, primarily marketed direct to the public as a vehicle for fundraising and direct donation (see also Brindle, 2020), but rather to its member charities, as a service-providing membership association. It speaks, likely, to the haste in which many of these pages were assembled by inexperienced fundraisers, but also to the relative vagueness of the appeal. The provision of standardised text to fundraisers has a dual function; making it easier and quicker for people to create pages, but also increasing the accuracy and consistency of information about the campaign. Whilst elements of standardised text were common, fundraisers customised the pages via the selection of which specific sentences of text to include, and framed them within their own choice of narrative.

COVID as an enemy, the NHS as a cause

The rhetoric of war (‘fighting COVID’, ‘battle against COVID’) was widespread in these fundraisers, as identified in other kinds of public discourse in the pandemic (Wicke and Bolognesi, 2020). In this, there were occasional references to the global nature of the COVID threat (“the planet is battling the COVID-19 pandemic”) but the focus was overwhelmingly national. Captain Tom Moore's veteran status (completing his walk in full military uniform) may have catalysed the more militaristic nationalist tone of some of the wider campaign, but many pages employed this metaphor without any reference to him. For example, a running challenge timed to “start[ing] on the 75th Anniversary of Victory in Europe (VE) Day on 9th May 2020, which honours another set of heroes who brought to an end the brutality of WW2.” These pages often positioned NHS staff as soldiers, fighting the virus as an enemy. Reflecting the early days of the UK pandemic, where the population was mostly locked down at home, NHS staff and volunteers are depicted as ‘heroes’ going out to a distant frontline to battle COVID-19:

“Men and women that everyday fight a battle for us and our lives, in and out of hospitals and care homes, while having little in the way of protection for their own health.”

“NHS Staff are out there on the frontline fighting it so that we can have our normal lives back”

The location of these perceived battles – at a ‘frontline’ – is identified as spatially distanced from fundraisers' lives, confined largely to their homes in lockdown. Many fundraising pages described the desire to ‘do something’ in a period where risk was strongly differentiated between NHS staff and other ‘keyworkers’, and the population at home.

We coded a range of related phrases across many of the pages as describing a sense of duty: “we must all play our part”, “give something back to the NHS”, “they deserve our support” and “we owe so much”. The frequent use of ‘we’ and ‘our’ here mobilised a collective entity. One phrase from the standardised text discussed above (“our turn to make sure we look after them, to ensure they can keep doing their vital work”) recurred frequently within this code. Within the sense of duty our coding distinguished pages which mobilised a reciprocal sense of duty (in which the desire to fundraise was linked to the level of sacrifice of current NHS staff, and a desire to enable them to keep protecting the population): “Every one of us are relying on the brave people in the NHS and Care sector. Let's put our hands in our pockets and make a difference”. In other pages, the duty was more generalised (simply presented as the normatively right thing to do): “because not doing something to help would be wrong.” Pages often expressed the need to ‘do one's bit’ in the context of relative helplessness: a wish to “do what I can”.

“To me and you, it may feel like we're not able to do anything, but we can still help from home too.”

“Everyone feels pretty helpless at the moment but it doesn't mean we can leave it to others.”

“Important that we try to help each other out in whatever way we can”

These pages expressed feelings of frustration during periods of self-isolation where symbolic acts, like shaving one's head, were perceived as the only way to help from a distance. Such individual challenges and symbolic acts thus seemed to represent an outlet to challenge intense feelings of anxiety and powerlessness into something creative and productive.

“In times like these, where some of us have never felt so distant, it is important to show unity and love. To stand together and support in any way possible, be it humour, creativity, or even just to be a listening ear and a shoulder to cry on.”

Doing something, here, becomes normatively desirable as a show of “unity and love” to a ‘good cause’, but significantly absent a clearly defined goal, or indeed an articulated belief that doing these things would significantly aid that cause.

In sharp contrast to analyses of conventional healthcare fundraising, in which personal disclosure of suffering, vulnerability and deservingness is the central communicative function of narratives, we encountered relatively few personal experiences of ill-health or loss within these pages. Fewer than 10% of pages were coded as having any reference to the fundraiser's personal experience with healthcare, and this included pages where fundraisers described working for the NHS.

“I have had the horror of witnessing the strain it has put on all staff first hand whilst myself working as a doctor in intensive care”

Strikingly, most pages which mobilised personal health experiences recounted past experiences of (often life-saving and life-changing) healthcare, which was described as demonstrating the importance and deservingness of the NHS.

“My personal story is of the NHS saving and rebuilding my life following two catastrophic strokes”

“Not many people know this about me but the NHS saved my life … This is just one example of the amazing work that all doctors and nurses do at the NHS on a daily basis. I'm sure you have your own personal stories of how the NHS has helped you or a family member or friend.”

Comparing these narratives to those mobilised within personal fundraisers in existing research demonstrates how measured and positive they are. Fundraisers for the NHS, as well as making less use of their personal experiences, have less need to reveal the “highly-vulnerable self-disclosures” (Gonzales et al., 2018) which characterise personal fundraising. In effect, NHS fundraisers collectivise the deservingness which individual fundraisers must strive to demonstrate alone.

The ontological basis of the NHS as cause is an intriguing aspect both of the wider appeal and of the pages which individuals and groups went on to create. Historically, charitable fundraising in the NHS has been highly localised, in that specific organisations (a hospital, for example) have held and fundraised for their own funds. As mentioned above, NHSCT's national fundraising only began in 2018, and there is thus no real tradition in the UK of donating to ‘the NHS’ rather than to one's local hospital (Paine et al., 2019). Nonetheless, references to “our wonderful NHS”, “our fantastic NHS” and our “amazing NHS” were prevalent. Overwhelmingly, fundraisers focused these narratives of gratitude on the NHS workforce, praising their commitment, the risks under which they were working, and their sacrifices.

“Imagine having to leave your family to go and work with infected patients, never knowing if you're going to come home with the virus -- or in some sad cases, come home at all. It's a huge sacrifice they're making for us and I think we should show all show our appreciation.”

Placing potential donors in an imagined position of vulnerability and risk here became a powerful discursive strategy to evoke strong emotional responses, but also feelings of solidarity and moral indebtedness.

Staff were frequently described as heroes, which later in the pandemic would become formalised into a proactive marketing campaign from NHS Charities Together: Be There for Them (NHS Charities Together, 2022b). During lockdown, the idealisation of NHS workers as heroes or frontline soldiers can be seen as a way of coping with intense feelings of powerlessness and unequal exposure to risk. Such idealisation of virtue and care typically occurs as a psychic defence mechanism during periods of anxiety, threat, or emotional difficulty (Leduc-Cummings et al., 2017). Given restrictions on charitable fundraising for equipment or wages which should be provided through statutory funding, fundraising for staff wellbeing was one of the most obvious ways for charitable money to be used in an emergency. Many pages drew on the phrase “above and beyond what the NHS alone can provide” from standardised text, leaving open what constitutes these ‘extras’. Relatively few fundraising pages referred explicitly to need generated by mis-management or perceived underfunding of the NHS. For example, one recurrent theme was around the provision of Personal Protective Equipment (PPE). A shortfall of quality PPE for health workers, and failings in Government procurement of additional stock, became a major political issue as the pandemic unfolded (Oliver, 2021). At this early stage of the pandemic fundraisers more often referred to it neutrally as accentuating the risks staff were taking when they went to work, rather than assigning blame.

Togetherness was another significant theme within the fundraising pages. This shares some similarities with the function of individual fundraisers in seeking and enrolling social support for people in difficult positions: Gonzales et al. (2018) note successful individual fundraisers expressing positive benefits from reconnecting with their existing social networks, and building new ones. Community connection suffused many pages including references to ‘our’ NHS, to ‘the community’ and even, albeit less frequently, ‘the nation’. Sometimes fundraisers involved sponsored, socially-distanced activities to encourage togetherness: for example “to allow people to come together in song, to feel a part of something bigger in the world and to support one another”. In others, donations are seen as communicating togetherness to NHS staff: “let them know the country has got their back” “we've got this!”. While often fairly generalised, in a handful of pages these pleas for collective togetherness were expressed as a response to the unsettling feeling of one's usual societal structures being removed:

“When the coronavirus outbreak started, I noticed that a lot of the things we take for granted stopped working. People started dying. I turned to my local authority for info and there was nothing there … Community is all we truly have and we must support and help each other … The NHS is amazing. It is there for us at the most profound moments in our lives, no matter who we are or what we need.”

The reference to ‘the NHS’ – which is after all a vast, national system of organisations – seems almost anachronistic in a post which refers to intensely localised desire for normality and community.

Discussion

This paper presents an analysis of UK collective crowdfunding for the NHS in the early months of the pandemic. In common with recent research on individually-oriented crowdfunding campaigns, we argue that this upsurge of fundraising pages generated “new cultural scripts of crisis” (Igra et al., 2021). However we identify the unusual features of this case, where scripts are concerned with persuasively communicating neither individual deservingness nor a convincing case that donating will ameliorate the need (Berliner and Kenworthy, 2017; Paulus and Roberts, 2018). ‘Deservingness’ was rarely individualised within these fundraising pages, and where it was, it was lightly done, for example as a description of a fundraiser undertaking a challenge that they would find difficult. The solution being fundraised for was both uncertain (in that most pages devoted relatively little attention to how the money would help) and shifting (in that some pages listed functions of the charity, such as lobbying policymakers for their member organisation's interests, that bore little relationship to the pandemic or to health services). We argue that these pages are better understood as solidaristic performances, mobilising dominant pandemic discourses of sacrifice (Wardell, 2021) and an outlet for general expressions of gratitude, than as conventional fundraising appeals with clearly defined goals. Fundraisers offered a chance to be part of the support for ‘our NHS’, and the ease of sharing fundraisers on social media, meant that they offered a route not just to support but to be seen as supportive, reflecting longstanding research on altruism in biomedicine (Locock and Boylan, 2016). While this crowdfunding appeal might have been less organic than related UK initiatives like the ‘Clap for Carers’ (Stanley, 2022, pp. 163–165), fundraisers personalized and framed ‘official’ aspects of the organisational appeal with idiosyncratic details. Moments of slippage between the official narrative and individual pages demonstrate the potential for agency even within an officially ‘scripted’ campaign.

We identify both financial and non-financial consequences of this major crowdfunding appeal, and emphasise how closely both are connected to their health system context. The inequalities which have been so convincingly critiqued in American research (Igra et al., 2021), and identified regarding individual crowdfunding in the UK (Burn-Murdoch, 2022; Saleh et al., 2020), are less pertinent where pages are not competing (often for potentially life-saving care), but separately working towards a shared goal (in this case, supporting the NHS in general). The financial goal of an appeal might serve solidaristic healthcare, or might individualise risks and entitlements. If pages within a collective campaign are disproportionately financially successful when initiated by wealthy fundraisers with significant social capital (Igra et al., 2021), this might be considered progressive, rather than regressive; a form of self-taxation by the privileged that generates welcome additional funding. This reflects arguments around the potential of ‘civic’ crowdfunding (Stiver et al., 2015). Davis and Cartwright (2019) promote crowdfunding as a finance option for local projects in NHS organisations in England. Their case studies are of local campaigns for defined projects, as opposed to the NHSCT campaign, which we have shown was strongly national in orientation. While Davis and Cartwright (2019) caution that civic crowdfunding should not be seen as an alternative to taxation funding, it is presented as a pragmatic solution to inject money into underfunded public bodies. A lack of diversity within those who invest is acknowledged (Davis et al., 2020), but there is little recognition of the longer term risk that local appeals may exacerbate inequalities by improving facilities in wealthy areas, and fundable clinical specialisms.

Beyond its material financial outcomes, broader literature on healthcare crowdfunding has explored how the institutionalisation of these practices generates persuasive new “scripts” for how people meet their healthcare needs, and how society judges their claims (Kenworthy, 2021). Such scripts reflect and promote both new public practices, and new public discourses. The NHSCT COVID-19 appeal mobilised relatively few individual narratives of deservingness, but nonetheless embeds practices of widespread fundraising as a response to crisis. These practices may generate positive solidarities, reflecting longstanding arguments in favour of expanding opportunities for altruism in health systems (Titmuss, 1970/2018). Indeed the themes within our analysis resonate more closely with Titmuss's classic study of voluntary blood donation in the English NHS (including gratitude, altruism, reciprocity and duty (Titmuss, 1970/2018)) than with the personal narratives of individual crowdfunding (desperation, suffering and worthiness). Davis and Cartwright (2019) go further, postulating that the non-financial benefits of collective crowdfunding might not only engage communities with their services but also galvanise public opposition to austerity, and generate “higher levels of support for taxation”.

The forms of engagement engendered through crowdfunding are specific to appeals in their context, and we would caution against a simple assumption that crowdfunding constitutes progressive engagement. The NHS COVID-19 appeal was indeed a massive engagement with the NHS, and yet, as we have shown, neither criticism of Governmental decisions, nor calls for increased taxation, were significant themes. The appeal was studiously apolitical, with COVID-19 clearly identified as an impersonal natural disaster that justified widespread fundraising. In this, the appeal created a space for harmonious public action, in an uncertain pandemic context where conflicts raged about other public behaviours, such as mask-wearing (Greenhalgh, 2020; Martin et al., 2020). This apolitical role is in keeping with the track record of NHS charities (Dunn, 2007). While combining campaigning and fundraising around healthcare is a common tactic from non-state actors in the NHS (Stewart, 2021), it relies upon their independence from Government, and NHS charities have closer links to the NHS. Far from generating political critique, crowdfunding practices may squeeze out spaces of critique. Appeals to national efforts, and sense of duty on the ‘home front’ mobilise mass responses and donations within a short timeframe, but can also make it more difficult to question or challenge governments (Gillis, 2020; Müller and Tuitjer, 2022). Just as some have argued that individual crowdfunding might import a commodified vision of healthcare (Dressler and Kelly, 2018), collective crowdfunding might supplant, and not cement, commitment to the compulsory funding of the system through progressive taxation. A defining feature of the NHS as a solidaristic institution (Prainsack, 2018) is that mandated contributions to the system reflect ability to pay. The recasting of the responsibility to fund a health system as optional, community-building, and even a celebratory mark of gratitude, is a reasonably new cultural script, worthy of further examination.

As well as embedding fundraising and donation as modalities of public action in the NHS, campaigns embed dominant discourses of what is worth protecting or celebrating about the NHS. The promotion of optional giving to the NHS via militaristic and wartime rhetoric, brands the NHS as not just a national, but a nationalistic, achievement (Fitzgerald et al., 2020). This broader shift has correlated with health policies which discriminate between citizens and non-citizens in troubling ways (Parekh et al., 2022; Shahvisi, 2019). The use of war metaphors and nationalist constructions of duty can have additional risks and temptations in a pandemic context. Assigning the virus human traits as an ‘invading force’ to be fought by ‘frontline’ NHS staff suggests that the public play only a background role during the pandemic, rather than public health measures requiring collective responsibilities and actions (Semino, 2021). Fundraising for the ‘war effort’ from the comfort and safety of home risks absolving people from other, behavioural responsibilities during the pandemic. ‘Frontline’ metaphors suggest a physical distance from danger while placing health workers at the centre of the battle (Cox, 2020; Olza et al., 2021). In all of this, the togetherness held out by the NHSCT appeal can be understood as seductive yet temporary. This resonates with Prainsack's (2020) descriptions of Austrian publics as “drunk on solidarity” in the earliest months of the pandemic, and her cautionary description of how togetherness slid into a search for an ‘out-group’ to blame as the pandemic proceeded (Ganguli-Mitra et al., 2020).

Conclusion

Recent critiques of COVID-era medical crowdfunding, including in this journal, have highlighted how these practices and platforms exacerbate existing inequalities within the US health system (Berliner and Kenworthy, 2017; Igra et al., 2021; Kenworthy, 2021). Our analysis of the NHSCT COVID-19 Urgent Appeal in the UK emphasises that such critiques are specific to campaigns in their health system context, rather than consequences of healthcare crowdfunding in general. Where financial inequalities of healthcare crowdfunding are less pertinent, as in collective crowdfunding for healthcare free-at-the-point-of-use, we must nonetheless be attentive to non-financial consequences, both of embedding new public practices into a health system, and of describing and celebrating health systems in particular ways. In our example, the unusual significance of the NHS within the UK's national imaginary (Fitzgerald et al., 2020; Stanley, 2022) played out within a ‘warlike’ context, inflecting healthcare crowdfunding with specific elements of nationalism. Far from crowdfunding's roots as a disruptive act against the system (Davis and Davis, 2021), this appeal promoted donating as a symbolic, communicative show of support, gratitude or love for the system.

While it took place in an extreme historical moment, the NHSCT COVID-19 crowdfunding appeal demonstrated widespread public willingness to fundraise for and donate to NHS services in the UK. However expanding and embedding crowdfunding into NHS organisations, as recommended by proponents of civic crowdfunding (Davis and Cartwright, 2019), needs to be critically assessed in the wider context of a health system, and for its longer term consequences. Celebratory discourses of gratitude and togetherness around healthcare may dull scrutiny and challenge of governmental responses (Arnold-Forster and Gainty, 2021; Gillis, 2020; Müller and Tuitjer, 2022). Future research should explore the health system consequences of crowdfunding practices becoming more widespread, and more invited by organisations seeking to bridge gaps caused by underfunding. NHS staff perspectives on these new funding routes, and their associated practices, are important to understand, especially given staff ambivalence to some of the celebratory activities of the pandemic (Darlow, 2020). Research has demonstrated the “dissonance” and “dilemmas” generated for staff by the introduction of “entrepreneurial logics” into NHS organisations, arguing that charitable activities can be a “palatable … entry point for their commercial activities” (Hodgson et al., 2021, p. 14). In the US, ‘grateful patient’ fundraising is increasingly recognised as fraught with ethical dilemmas (Collins et al., 2018; Walter et al., 2015). Alongside this, we need to better understand crowdfunding as entrepreneurial citizenship, alongside entrepreneurial patienthood (Kerr et al., 2021a). In both sets of practices, the decision to fundraise can be seen within efforts to navigate a route through increasingly uncertain systems of care. While we can commend people and organisations finding alternative routes to meet healthcare needs, we must also recognize that the need to do so is a failure of solidaristic societal responsibility for healthcare. Healthcare crowdfunding is now firmly established as a mode of public action: understanding its varied modalities requires more textured conversations on its possibilities in specific historical and national contexts (Wardell, 2021).

Author statement

ES: conceptualisation, funding acquisition, methodology, project administration, validation, supervision, Writing – original draft, Writing – review and editing. AN: conceptualisation, data curation, formal analysis, methodology, Writing – review and editing. CM: Formal analysis, data curation, writing – review and editing. KB: investigation, methodology, writing – review and editing.