“North Halifax is notorious,” Lisa Okonkwo, leader of St George’s Community Trust, tells me as we sit in the old vicarage of the church that is now the home of the trust. A street close to where we are sitting is among the poorest 5% in Britain, and the area has problems with poverty, crime, drugs, alcohol, gangs, stabbing, and high rates of poor health. But people are proud to live here; many, including Lisa, have lived here all their lives. People in Lee Mount, where we are sitting, think of themselves as “very different” from people who live in Ovenden, which starts a hundred yards away. But at the same time people are attached to Halifax, and Lisa tells me how she hates to go to London and goes to Bradford, which is 10 minutes’ drive away, as infrequently as she can manage. She is deeply rooted in this community and knows and is known to almost everybody.

I’ve come from London to try and learn about a community project that Lisa has run with C3 Collaborating for Health on preventing non-communicable disease. “People come up first class from London to see our miseries,” says Lisa, joking rather than complaining. The project ran for a year with funding from Nestle, which has a factory in Halifax. (Nestle acquired Rowntree Mackintosh, which started the factory in Halifax, in 1988.) Lisa’s mother worked in the factory. The project ran well despite health not being the priority of people in North Halifax. Indeed, they don’t like being asked about their weight, diet, and lifestyle. They feel “judged” and don’t want to be judged.

The work is hard “like pulling teeth”

St George’s Community Trust works on health and wellbeing, families, children and young people, environmental issues and training and employability. But the work is hard, “like pulling teeth,” says Lisa. People are reluctant to accept help until they are desperate. She tells me the story of parents who couldn’t feed their children after the father had an accident and lost his job. They wouldn’t go to one of the three foodbanks in Halifax, so Lisa took them food in bags that hid that the food came from the food bank—but they wouldn’t accept it as first. Eventually they did.

“People know me,” says Lisa, “my grandparents lived here.” But still people are reluctant to engage with her: “What’s the point of telling you what we want. Nothing’s going to change. These are hard times, but we’ve had hard times before.” Lisa has managed to do lots of good work in the community, but she is sure that anybody who came from outside the community would have no chance of getting people to engage.

Lisa tells me the story of an angry man coming to her door and complaining that she was making his daughters go to school and get a qualification. Their job was to look after their father not get above themselves. But once the man realised that he had known Lisa’s father he calmed down.

At one point we are joined by Sarah, who has trouble feeding her children. She travels all over Halifax by bus to be able to buy the cheapest food. She knows it’s not the healthiest food, but it’s what she can afford. She knows she’s obese, but how could she not be, she asks, when she has to eat such unhealthy food. She regrets too that she can’t afford to give her children a holiday. She has been greatly helped by Lisa and tells me how she wouldn’t have been comfortable talking to me a few years ago. “My self-esteem” is low. I reflect that “self-esteem” is a phrase that she probably wouldn’t have used until she encountered health authorities of some kind.

What do people want?

I ask Lisa and Sara what they think is what people in North Halifax most want. “Money,” they answer in unison. Money empowers, whereas poverty corrodes, making everything difficult.

Lisa explains that several families in North Halifax live by “scotching,” a word I’d never heard that she explained meant claiming benefits but also making money from crime, mostly dealing drugs. The families are long established, “like the Krays in London,” says Lisa. “They don’t bother you unless you bother them.” If you do bother them then you “end up in Scammadon,” a reservoir on the moors. Every decade when they drain the reservoir they find bodies and cars. The families have their territories, but the council, ignoring the warnings of local people, made the mistake of combining two schools that contained rival families. The result was a school that was declared the worst in the country and had to be closed. Sarah attended the school and described people fighting the teachers and hitting each other with baseball bats. The police know these families but don’t touch them. Lisa thinks that somebody must be paid off.

Funding, a matter of “pimping”

Doing community work in such a community is far from easy, and St George’s Community Trust has no core funding and gets nothing from the council. The centre, the old vicarage, is provided by the church on a peppercorn lease, and the trust has some income from renting rooms. Lisa gets funding, she says bluntly in her strong West Yorkshire accent, by “pimping myself out.” This means chasing grants and funding and chopping and changing from different projects; one benefit is that Lisa doesn’t get bored.

Currently 24 hours of her time is paid for by a friend’s private company, where she manages human resources and health and safety. The company, which is based in North Halifax, produces online resources for teachers and has grown from eight employees in May 2018 to 46 now soon to be 55.

Another six hours is funded with a grant from Medtronic, which C3 has facilitated. The grant involves using machines to weigh people, calculate their body mass index, and measure blood pressure. Lisa had problems getting anybody to use the machines. People know they are fat and don’t need a machine to tell them; and people don’t want to know their blood pressure. They wait for something to go wrong and then go to the doctor, not that they seem to have much confidence in the NHS. This is, of course, true of people everywhere, which is why treatment constantly trumps prevention.The local GPs, says Lisa, are a “mixed bag.”

Raising money from individuals is not easy, and Lisa tells the story of a man whom she had known since a child who won £4 million in a lottery.  Years before he had had mental health problems, and Lisa had helped him through them. “I’ll never forget what you’ve done for us,” he said, but when he won the £4 million he did forget.

Lisa has been in meetings regarding funding with the local Clinical Commissioning Group and Public Health England —“big wigs in suits.” She got no money from either. I asked Lisa a leading question: whether she thought it was right that tens of thousands might be spent on drugs trying (and often failing) to keep somebody alive at the end of life when she couldn’t get any funding for community work? She said “If it was my family member they were trying to keep alive, I wouldn’t care how much it cost.”

But I reflected that it was unrealistic to try and address inequalities in health through the machinery of the NHS. Work in the community is surely needed.,

Lisa is currently paid for 30 hours. I asked her how many hours she works, and she says that she worked 13 hours the previous day (a Wednesday). She estimates that she works about 50 hours a week. I ask her why she does the work. “It’s my community,” she answers, adding that many services are shutting down.

The Nestle project

C3 has long worked on community projects, and Nestle agreed to fund a C3 community project in Halifax and Girvan, where it has factories. Lisa heard about the funding from a local councillor. C3 is one of the few public health organisations that thinks it important to work with everybody, including private companies, to try and improve health. Some £20 000 was available (which, I reflected, was not much when the global turnover of Nestle is 91 439 million Swiss Francs (£69 622 million) and its profit after tax 10 648 Swiss Francs (£8107 million)).

There were three possible contenders for the funding: the St George’s Trust; Holy Nativity Church (Mixenden); or Halifax Opportunities Trust (HOT’s) in West Central. HOT’s would have to pay VAT, reducing the value of the £20 000, and the vicar who ran Mixenden didn’t have the time to spend the funding well or do the additional work. C3 selected St George’s Community Trust, granting it £10 000 for Lisa’s salary for a year and £10 000 to spend on projects to promote health and well-being, particularly physical activity and healthy eating.

C3 has a software tool called CHESS that was developed in the US that they encourage communities to use to measure the healthiness or otherwise of their community. People go street by street and record factors affecting health like fast food outlets, newsagents selling cigarettes, and parks. Lisa was not impressed by the tool: she knew her community well enough not to need such a tool. Nevertheless, she gathered five people together to use it, offering a £25 voucher to those who joined. One of those people was Sarah, who found the £25 much more valuable than the results of the CHESS survey.

Lisa put together a group of five, which included Sarah, her sister, and her sister’s husband to oversee the project. They came up with an action plan and principles for distributing the £10 000. Their guiding principle  was that they would concentrate on maintaining what they already had. They recognised in addition that they needed “data” to convince C3 and Nestle that the funds had been well spent.

They gave £3000 to three sports clubs, two of which without the funding might have had to close. These clubs between them had over a thousand members of both sexes aged between 5 and 97. They gave  £1000 to Mixenden Holy Nativity Church, which runs a wide range of community projects (including lunch clubs, parent and toddler groups, and kids’ clubs) and started a mindfulness course. They gave £425 to Mixenden United Football club for pitch fees.

Naively I asked Lisa if they had thought of asking for proposals and giving the money to the best. Lisa said they would have been “inundated” and created “chaos.” It would she said have been “the worst position to be in” because they’d have created expectations that couldn’t be delivered.

They gave £1000 to the cricket club, with £500 going to subsidise 5-8 year olds being coached; 18 of the children came from North Halifax. Another £1000 went to Noah’s Ark, a local charity started 19 years ago for people with mental health problems. A breakfast club was started with a £1000 for parents, so that they could come and have a natter and deal with any issues they had, health or otherwise.  There was also a tea club for after school, where adults could talk to each other and children play. Lisa charged £1 for the tea club on the grounds that people don’t respect what is free and that paying something gave people a sense of worth. I asked her cheekily if she though that NHS ought to charge a small amount for each consultation with a GP. She thought yes.

In addition to giving money to groups, Lisa and her team ran many projects: walking clubs, exercise groups, programmes on the “five ways to wellbeing” (connecting, giving, being active, learning, taking notice of your surroundings), and cooking groups. Lisa prides herself that it never costs her more than £10 to feed up to 20 people.

After two years the money was spent, and Nestle didn’t offer further funding. C3 had never expected there to be further funding and so concentrated on asking the community leaders to build skills and capabilities. Lisa was disappointed that she never got to meet anybody from Nestle. It’s hard to understand why that didn’t happen when Nestle presumably wanted to show their commitment to the town. I can’t help think that if Lisa had met the people from Nestle she’d have used her considerable powers to get continuing funding from them—because a great deal had happened for £20 000.

Evaluation

C3 made an attempt to evaluate the impact of the project using numbers, but in the absence of a baseline, any controls, or, indeed, any agreement over what constituted the community (C3 described it as Ovenden, whereas Lisa thinks of it as all North Halifax) the evaluation has little value. But a lot did happen, some of it continues, and community organisations that might otherwise have closed have kept going.

Although this was a community project, it was clear to me that none of it would have happened without Lisa. Indeed, the fact that community work continues depends on Lisa. I asked her what would happen if she dropped dead; she agreed that the community work would stop.

Community work is both important and hard. My friend Pritpal S Tamber has with others studied community projects and developed 12 principles on what is needed to make them successful. https://www.healthandcommunity.org/our-work/

1. Include in a community’s collective effort those who live there, those who work there, and those who deliver or support services provided there
2. Spend time understanding differences in context, goals and power
3. Appreciate the arc of local history as part of the story of a place
4. Elicit, value and respond to what matters to community residents
5. Facilitate and support the sharing of power, including building the capacity to use it and acknowledging existing imbalances
6. Operate at four levels at the same time: individual, community, institutional and policy
7. Accept that this is long-term, iterative work
8. Embrace uncertainty, tension and missteps as sources of success
9. Measure what matters, including the process and experience of the work
10. Build a vehicle buffered from the constraints of existing systems and able to respond to what happens, as it happens
11. Build a team capable of working in a collaborative, iterative way, including being able to navigate the tensions inherent in this work
12. Pursue sustainability creatively; it’s as much about narrative, process and relationships as it is about resources

Few projects manage to follow all 12 principles, and Lisa’s work in North Halifax is no exception—nevertheless, she is a remarkable woman who has achieved a lot with limited resources and could achieve much more with more resources. If I was the local CCG and wanted to reduce health inequalities I would work with her and give her more resources and support.

Richard Smith was the editor of The BMJ until 2004.

Competing interest: RS was an unpaid trustee of C3 for six years finishing two years ago. He paid his own expenses to visit Halifax and has not been paid to write this opinion piece.