The community cure? Why hospitals can’t heal health inequalities
In the UK, access to healthcare may be egalitarian in principle, but outcomes are far from equal. Spurred on by the experience of Covid, a growing movement is finding bold new solutions – not just within hospitals or GP surgeries, but in the places, homes and communities that build and sustain good health. Katy Oglethorpe investigates in a new long read.
In 2020 the UK broke a grim record. Life expectancy, which had been increasing steadily for 100 years, stopped rising. In the most deprived regions of the UK, averages actually fell, with nearly a year shorn from female life expectancy in some of our poorest places.
We live in one of the most unequal countries in the world. A baby born in one of the UK’s most deprived areas can expect to live for a decade less than a baby from a rich area. And despite this shorter lifespan, she will spend far longer in a state of ill-health. The Covid pandemic has exposed and stretched these inequalities, seeing people from the UK’s most deprived places twice as likely to die from the disease.
Amidst this, we celebrate the generosity and universalism of our NHS, offering free healthcare to all. And yet our experiences of healthcare are not the same. A third of premature deaths in England are linked to inequality. People who are economically poorer wait longer in A&E; have worse experiences of GP services; are more likely to relapse after treatment for mental illness. Black women have five times the risk of dying in pregnancy than white women, and have a higher fatality rate from various cancers. People from the LGBT community report a far more negative experience of accessing primary healthcare than people who are heterosexual. During the last 16 months, it has been people from already disadvantaged social groups who have faced the most disruption to their healthcare.
A baby born in one of the UK’s most deprived areas can expect to live for a decade less than a baby from a rich area. And despite this shorter lifespan, she will spend far longer in a state of ill-health.
The NHS is alive to these unbalanced experiences and outcomes. It has made reducing health inequalities a key priority of its Long Term Plan, directing £1 billion towards the country’s most deprived places. But at a time when pressures are rising and outcomes are getting worse, is it looking in the right places for answers? Could solutions lie outside hospitals and surgeries, and inside our homes and communities instead?
A different kind of doctor
For a GP, Mark Spencer spends remarkably little time in his doctor’s surgery. You are just as likely to find him joining in a choir practice at a residential home; sitting in at a Men in Shed’s therapy session or helping a local gardening group get off the ground. This is not early retirement, but a conscious choice to rethink his role as a general practitioner.
Spencer’s practice is in Fleetwood, an ex-fishing town on the Lancashire coast that sits near the bottom of the UK’s deprivation index. Five years ago, says Spencer, the mental and physical health of residents seemed to be getting worse. Several men in the town took their own lives. Looking for answers, Spencer was struck by a provocation from health inequalities savant Sir Michael Marmot, who asks: “Why do we treat people’s illnesses, and then send them back to the conditions that have made them ill?”
“I came to realise that the reasons for illness were rooted within the community itself,” says Spencer. “No matter how many advances there were in the NHS; how many new medicines came out, if all we were doing was managing illness we weren’t making a difference to our community.”
Spencer started the ‘Healthier Fleetwood’ initiative. It oversaw the formation of dozens of groups, running all sorts of community social activities. These took off, becoming self-managed by residents. Today there are 28 such groups in the town, ranging from ‘knit and natter’, to fishing, to walking groups.
Standard public health messages just don’t work in disadvantaged communities, and they don’t work on people who have no hope that life is going to get betterDr Mark Spencer
Improved health outcomes were not an explicit aim. Spencer is averse to the phrase ‘social prescribing’ and the health warnings thrust on people whose ‘lifestyle choices’ we blame for their poor health outcomes.
“I think standard public health messages just don’t work in disadvantaged communities, and they don’t work on people who have no hope that life is going to get better,” he says.
Simply by virtue of being part of these groups, Spencer noticed that behaviour became ‘health-promoting’ rather than self-destructive. “People started to make healthier choices, because they had that hope there that ‘actually I quite want to live long enough to see my grandchildren grow up’,” he says.
Healthier Fleetwood has begun to have a tangible impact – people have found connections, eased loneliness, become more physically active. “We’ve seen folks lose half their body weight by singing,” notes Spencer, with some astonishment. What’s more, A&E admissions and GP prescriptions fell in the year leading up to Covid, bucking the national trend and attracting curious health tourists to a town once a favourite of Victorian sun-seekers.
Door-to-door health in Brazil
The key to Healthier Fleetwood is that community members lead their own health creation, while supporting their neighbours to do the same. Similar principles guide a project in Brazil, which has gone even further in embedding community-led approaches to tackling ill-health.
“If this model were a pill, we would all be taking it”Dr Matthew Harris
Across Brazil, 250,000 community healthcare workers (CHWs) look after the wellbeing of their neighbours. Assigned a ‘patch’ each, they work with the same 200-or-so families, visiting them once a month to keep track of their wellbeing, offer advice, and connect them with statutory services or community groups.
In the 30 years that the scheme has run, cardiovascular and cerebrovascular diseases have fallen significantly. Areas with high coverage of this model had 31% lower mortality for stroke, and 36% lower mortality for heart disease. All from a scheme that only costs $50 per person per year.
“If this model were a pill, we would all be taking it,” says Imperial College’s Dr Matthew Harris, who worked as a GP in Brazil and has championed the same approach in the UK.
CHWs are both community members and healthcare employees. This means they can bridge the gap between people and statutory services, says Harris, becoming a single trusted person who can connect into a range of services and local opportunities. Regular visits from the same person means that on a basic level, they will notice if someone they visit one month seems less well the next; they will be trusted as a neighbour and not an unknown professional.
In June 2021 Westminster council became the first in the UK to introduce CHWs. More areas are looking to follow suit. Westminster chose its pilot ward due to high levels of deprivation, although the area does also contain wealthier households. CHWs will be trained and supported by a pioneering local GP.
So what come after the knock on the door? A CHW might ask a neighbour about general health concerns, whether children had been immunised, whether a woman has had her cervical smear; if they were taking any medicines, needed prescriptions, had concerns about neighbourhood; employment; educational attainment, truancy. A CHW might respond by making connections with health and care services; organising community health education groups; signposting to other community assets. They might identify at-risk children, spread public health messages and generally support individuals with low-level health problems.
“It’s the continuous engagement that’s very important,” says Harris. “We do a lot of ‘hit and run’ in the UK – giving advice with no follow up. This is the opposite – continuous but not overpowering, not invasive, continuing long enough to build up trust and get to know people.”
This proactive, personal approach is particularly valuable for people who might mistrust institutions, or who lack the social capital, literacy, time or confidence to navigate the healthcare system. But it has more universal benefits, says Harris. Not only because no one is immune to ill-health, but because the NHS can miss people who might need support.
“The NHS has stratified risk to such an extent that we miss the vast majority of people,” he says. “We tackle inequalities by finding out who’s disadvantaged first, but to do that we’re only using data from people who have already accessed the system.”
Fighting a tsunami of demand
Community-led models like CHWs help ease the burden on primary and acute health services, by finding solutions outside of hospitals, and preventing more serious diseases from taking root.
This is growing more vital. In June 2021, the number of people waiting for hospital treatment topped 5 million for the first time. Meanwhile GPs at a recent emergency summit spoke of rising abuse; a “tsumani of demand” on their services, of primary care “in meltdown”.
This mirrors the experience of Dr Jaweeda Idoo. As a GP in Stockport, she reached a point a few years ago where “one-fifths” of those making appointments at her surgery couldn’t be treated. “They were coming to me because they had other social issues and social determinates that couldn’t be met medically,” she says. “Sometimes they were just very lonely.”
Idoo recruited a team of 18 patient volunteers to work on a solution. Like in Fleetwood, they decided to set up social groups that matched their skills and interests. These grew, becoming self-sufficient. Today, Idoo holds consultations in community allotments, where residents also run diabetes-friendly gardening and cooking lessons.
Idoo’s surgery saw a fall in the number of people seeking consultations, and she had more time to focus on those needing medical help; spending longer with each patient. It also sparked a change her own professional mindset.
“I’d previously only recognised a lot of my patients in a deficit-based way: some of the people were in the last year of their lives. But when they came together they were so powerful,” she says.
Idoo, Spencer and the communities around them are what former NHS boss Sir Nigel Crisp calls ‘health creators’. Many of these, notes Sir Nigel, lie outside the formal healthcare system: the policeman in Cornwall who was fed up with chasing young people for minor offences and worked with them to create a dance club which now – 14 years on – is run by the young people. Or the group of women in Yorkshire who started growing vegetables in public spaces, who have inspired 150 other groups around the country. Or the woman in Skelmersdale, Lancashire, who set up a community sewing business providing local employment and supporting lonely older women.
“These health creators are doing something different – taking control for themselves and their communities. Acting for their own reasons, seeing a problem and dealing with it.” says Sir Nigel.
“They tend to see health in a very rounded and holistic way. They are creating health by which I mean creating the conditions for people to be healthy and helping them to be so.”
People from ethnic minorities were twice as likely to die from the first wave of Covid-19 as their white counterparts.
Rates of vaccine take-up among people from BAME backgrounds have also been considerably lower than in the white population. While 90% of those aged 70 years and over had received at least one dose of vaccine by mid-March, uptake rates were 59% and 69% in Black African and Black Caribbean groups respectively. These differences were most pronounced in those living in the most deprived areas of England.
For many, the vaccine rollout has exposed institutional mistrust within ethnic minority populations. It has also shown the limitations of blanket public health messaging as a means to convince people to do ‘what’s good for them’.
“What is the biggest thing we can emerge from this pandemic with? Narrowing health inequalities”Bola Owolabi
But rather than shrug off whole populations as ‘hard to reach’, Covid-19 created an imperative to reach them, sparking new means of engagement and sources of partnership.
Many councils – including Bristol, Bradford and Tower Hamlets – offered vaccines in places of worship. Bristol worked with trusted community leaders and faith leaders to publicly take the vaccine, and introduced ‘community champions’ to encourage their neighbours to take the vaccine – sometimes even making appointments with them.
For Dr Bola Owolabi, who recently took on the role of Director of Health Inequalities at NHS England, says the vaccine rollout provides lasting lessons for creating more equal healthcare.
“For me – what is the biggest thing we can emerge from this pandemic with? Narrowing health inequalities”, she told The Kings Fund.
“I think of the webinars that I’ve been on: talking to faith leaders, community leaders, communities themselves – driving up confidence in the vaccine. I look at all those partnerships, relationships, networks that have emerged from the pandemic and I see how we can absolutely now leverage all of those to tackle the wider health inequalities that predate the pandemic.”
Many roots to health
For Owolabi, the past year has seen a “cultural transformation” within the NHS, as it embraced more partnership working. “If we ever needed a demonstration of how a whole-system approach is how you address health inequalities, the pandemic is the worked example,” she says. The NHS has come to a fundamental realisation, she says, “that when we work together we make greater progress than we would on our own”.
“We continue to see health in narrow, institutional terms; waiting for the same people to pitch up at A&E.”Prof Donna Hall
It’s a belief shared by Prof Donna Hall, Chair of New Local and Bolton NHS Trust. In her former role as CEO of Wigan Council, Hall took a broad look at who was responsible for managing and treating health, and involved local government, the NHS, the police, community groups and more in a joint endeavour to tackle health inequalities. She invested £13 million in community groups, who ran mental health projects, befriending services, walking groups and more.
For Hall, this holistic approach simply reflects the complex, interlinked causes of ill-health. “We know that poor health takes root early and tightens its grip through inadequate housing, education, employment and life experiences,” she says. “And yet for some reason we continue to see health in narrow, institutional terms; waiting for the same people to pitch up at A&E.”
The ‘Wigan Deal’ saw life expectancy rise by 31 months across the town, at a time where the UK average lifespan fell. In Wigan’s most deprived wards, women’s lifespans increased by an average of seven years.
Creating this sort of impact may require the unspeakable for our cash-strapped health service: diverting budgets away from primary and acute services and towards community-based health. Raj Jain is one proponent of this. As Chief Executive of the Northern Health Alliance (NHA), he is choosing to invest much of this organisation’s £1.3 billion growth budget into community services. The NHA is also working with local authorities to employ some of the most disadvantaged people in his ward, something which he believes “could have a more significant and longer impact on health than most of what we do in the hospital”.
For Jain, it’s a worthwhile payoff: investing in anticipatory, community services as a means to promote good health and reduce long-term pressure on acute services; “allowing hospitals to concentrate on what only they can do”.
These are grand, futuristic plans, reminiscent of the mega hospitals that stood staff and patient-less throughout the pandemic. They assume what the NHS really needs is to go harder, faster and techier, acting in glorious isolation.
It may take a while for national decision-makers to catch up with him. In a Times interview, Michael Gove acknowledges the demand crisis facing the NHS, but lands on expensive, technocratic, hospital-centric remedies: faster operations from “accelerator hospitals”; utilising “spare capacity” in operating theatres, and “re-engineering the system using technology”.
These are grand, futuristic plans, reminiscent of the mega hospitals that stood staff and patient-less throughout the pandemic. They assume what the NHS really needs is to go harder, faster and techier, acting in glorious isolation. They underestimate the scale of the long-term crises facing the NHS, and are blind to the preventative potential that lies in outside the doors of A&E, within our communities.
Addressing our health inequalities is a matter of human happiness and human dignity. We have a right to good health, wherever we are born. A universal health service like the NHS should offer the same level of care to everyone, and should exist to help every person improve their life chances.
We need desperately to find solutions to some of the NHS’s burning issues: mounting demand, falling budgets, lower staff retention and satisfaction, growing waiting lists, and poorer health outcomes than most of the UK’s wealthy counterparts.
We know the causes of ill-health are multifarious, inextricably linked with our own personal histories and societal disadvantages, or advantages. Much ill-health is produced – or avoided – by the types of lives we live. Indeed, a US study estimated that up to 40% of premature deaths are preventable – avoidable by making changes to everyday behaviours. It stands to reason therefore that the solutions to preventing ill-health lie in our individual, complex lives, not just in the corridors of our health institutions.
Much ill-health is produced – or avoided – by the types of lives we live. Indeed, a US study estimated that up to 40% of premature deaths are preventable – avoidable by making changes to everyday behaviours.
Evidence is showing that community-powered approaches to health work. Initiatives in Fleetwood, Brazil, Stockport, Wigan and elsewhere are intrinsically focused on prevention. They accommodate the complex, interplaying elements of people’s lives and health. They help people – particularly the most marginalised – navigate the complex world of healthcare, or find alternatives to institutional care. In doing so they make room for the medical profession to concentrate on what it does best – curing disease and managing illness. Meanwhile, as the choir members of Fleetwood could attest to, the very fact of being part of an empowered community offers a route key to good health – connection, purpose, control and hope.
Community members may not be able to perform coronary artery bypass graft surgery, but they can create the circumstances that lessen the risk of heart disease occurring. By doing so, they could offer us a key to some of the deepest problems in our healthcare systems, and give everyone a fair chance of living a full and healthy life.
Thank you to everyone who contributed to this article. These include Nagina Javaid, Brendan Martin and Nick Sinclair, as well as those quoted above.
New Local is working on a major new research project exploring the role of community power in the future of the NHS. We are welcoming evidence submissions until 9 July 2021. The report will publish in Autumn 2021.Join our mailing list