Guest Editor

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