Re-imagining healthcare towards health equity
James Matheson, Shared Health Foundation; Hope Citadel Healthcare GP; Chair, Health Inequalities Standing Group, Royal College of General Practitioners
Published in JHH17.3 – Beyong Covid
In my earlier work I travelled the world and saw the contrasts between health and wealth and the effects of poverty in different places. In joining the healthcare profession I hoped to be able to travel to distant places and try to help in some way to redress the balance. After some time working mostly in the UK, however, I realised that you didn’t have to travel to see poverty, injustice and the health inequalities that resulted – we had plenty of our own in this country. In Hope Citadel Healthcare I found a dedicated team of professionals and volunteers working with disadvantaged communities around Greater Manchester to improve the lives of people at the hard end of the inequality spectrum. Their results demonstrated to me the power that a kind and holistic approach, addressing the social determinants of health, can have in supporting people to transform their lives. They introduced me to health inequalities and the broader communities of people intent on confronting our own inequities and making things better. This piece of writing contains lessons I have learned from all of those people and those who have taught me before, about how the NHS can be its best for those who need it the most.
Health and social care services can, at times, be very proficient in excluding, abandoning, blaming and shaming individuals who do not relate to them in the way desired, and in doing so maintain the very problems they are aiming to treat.
Adam Burley (in press)
Introduction
As a GP in a disadvantaged community I see the, often grim, realities of health inequalities on a daily basis. These are the lives marked by illness and cut short by early death, leaving the next generation of young orphans behind to grieve. My roles with the Shared Health Foundation and RCGP’s Health Inequalities Standing Group are about addressing not just the consequences but the causes of inequalities and pitching into the fight for health equity. Here, re-imagined, is a possible NHS – as it is at its best but everywhere.
Covid-19 is a staggering tragedy claiming the lives or ruining the health of so many people worldwide. It has changed the world in awful ways but also some good ones, and represents an opportunity for reform. Changes in healthcare provision more massive than we ever imagined have happened at rapid pace and demonstrated that we can change systems and functions… when we want to. Now, amid an ongoing pandemic where we have put Covid at the centre of everything, we are obliged to re-imagine healthcare for the future and what its focus will be.
Covid-19 has put health inequalities in the national spotlight with people being more likely to get and die from Covid if they are from poorer socio-economic groups and with staggering increased mortality if you are from a Black, Asian or minority ethnic group (Bibby et al, 2020). These statistics represent tragedies and travesties but they should not come as any surprise. Covid mortality in England and Wales follows the gradient of all-cause mortality prior to coronavirus (RCGP Learning, 2020). This injustice has persisted for many, many years and has been called ‘…two centuries of social murder’ (Riley, 2020).
The inverse care law
The availability of good medical care tends to vary inversely with the need for it in the population served.
Julian Tudor Hart (1971)
Julian Tudor Hart was a holistic and ‘upstream’ clinician, adamant that consultations must include the alleviation of suffering and the prevention of disease and very much engaged in a community that might otherwise have struggled to engage with healthcare. Tudor Hart described the inverse care law in 1971 and we are still addressing its effects now. Lack of access and variable quality care describe the problem but also offer solutions.
Let’s start imagining how a health service might look if it were designed, not by the mostly healthy people who provide it, but by those with the healthcare needs, in order to address those needs and in a way that is accessible by them. This seems reasonably logical, yet the enormous transition in thinking and service-provision that it would entail means the suggestion is generally met with incredulity, resistance and the reply that such a paradigm shift is simply unrealistic. But why?
To bring about change, you must not be afraid to take the first step. We will fail when we fail to try.
Rosa Parks (Reed & Parks, 1997)
As a provider and user of NHS services I can still say that our National Health Service is one of my favourite things in the world and invaluable to people with health problems. It has helped save lives, cure illness and relieve so much suffering. It is, however, far from perfect and equity of access and experience of the service are areas where we can improve. When considering a different future it can be helpful to think about what needs changing and why.
Hard to reach or excluded?
We frequently hear about ‘hard to reach’ groups. The term is most commonly applied to people experiencing street homelessness. They are right in front of us. Reaching them is as simple as taking healthcare to where they are – on the streets – and there are many examples of this working. Sadly, these are usually pilot schemes and when the short-term funding runs out the initiatives are abandoned.
We know that adverse childhood experiences (ACEs) are really common, that mounting exposures are associated with poorer health outcomes (Felitti, 2002) and that the developmental and social sequelae of ACEs mean people can have difficulty relating to others and to systems. As a matter of course, however, we take no account of this, noting only another ‘Did not attend’ from their referrals or even excluding them from practices if they fail to show up on time on a regular basis. This ‘missingness’ from healthcare is costly – to the individual, whose absence is associated with early mortality, and to the system, where it brings greater costs (Williamson, in press). A re-imagined NHS would be more ‘trauma-informed’ in how it, and we who work in it, relate to the people we mean to serve.
It is not, however, that people experiencing homelessness do not seek help. Often, though, that is through hospital emergency departments. ‘Accident and Emergency, love. The clue’s in the name’, was the catchphrase of one A&E sister, as she deflected attendees. The expression ‘no closed door’ becomes popular again once in a while. It doesn’t seem to be now. For homeless people, accessing care in ‘the proper way’ can be particularly challenging when we purposefully exclude them from it. Despite the now widespread knowledge that you do not need proof of address to register with a GP, people experiencing homelessness still report being turned away from practice after practice because they lack paperwork.
We, healthcare providers, are often the barriers to healthcare. A study by Friends, Families and Travellers (2019) found that 24 of 50 general practices refused to register a woman who made it clear she was a Traveller without proof of address, even when she reported symptoms suggestive of cancer. What are the factors behind this exclusion? Are they administrative, are we full to capacity, is it racism or are some patients’ problems just too difficult to help? We must identify the causes and make change.
Different or indifferent?
Action is the only remedy to indifference: the most insidious danger of all.
Elie Wiesel (1986)
We are even more active in our efforts to distance other groups of people from care. Refugees and asylum seekers bring with them all the health conditions with which they started their journeys and often accrue injuries and much psychological trauma along the way. The government’s creation of a hostile environment should not be supported by healthcare. Asylum seekers, aware of the risk of charges or collusion with the Home Office, often avoid contact with the healthcare system even in extremis. This is bad for their health, for the health of the community (especially where communicable disease is concerned) and for the NHS which will deal with the more severe consequences of later presentations. As the campaign group Docs not Cops point out, healthcare is a right, not a privilege and the provision of free healthcare to all who live in the UK was a founding principle of our NHS which must endure.
Systemic racism in the NHS
Racism has recently been prominent in our minds, highlighted by the Black Lives Matter movement. The discussion that has generated has opened the eyes of many to the failings of our own organisations and the huge levels of discrimination and suffering which result. The following graphs illustrate the strengths and the challenges.
Figure 1 shows how diverse the NHS actually is – substantially more so than the general population:
Figure 2 shows the diminishing representation from people of Black, Asian and minority ethnic groups with increasing seniority of position.
The structural violence in our society, which means that people from lessadvantaged families or areas or ethnic groups die more from Covid and other diseases, can be seen in the institutional racism present even here, in our healthcare organisations. Unconvinced? While almost 1 in 10 people in England’s first language isn’t English, it took Doctors of the World, a medical charity, to translate government coronavirus information into any other language. We can do better. By taking the time to talk with colleagues as well as patients about race, nationality and language, by recognising privilege and the effects of not having it, by removing barriers and promoting inclusion we can make the NHS better.
The beauty of anti-racism is that you don’t have to pretend to be free of racism to be an anti-racist. Anti-racism is the commitment to fight racism wherever you find it, including in yourself. And it’s the only way forward.
Ijeoma Oluo (2019)
Remote consulting
The Secretary of State for Health Matt Hancock has suggested that remote consulting should become the default option even beyond the pandemic. Remote consulting has helped us function through Covid and has been convenient… for some. We know that young people and older adults consult more by telephone. For young people this probably represents convenience and ease of access. For older people this probably reflects impaired mobility and a lack of resources for home visits, in other words, exclusion. There is a lack of evidence of the effects of remote consulting on exclusion and inequality. For now it must remain just one option available to be chosen as a way of connecting with healthcare from a number of options which, between them, create access, quality and safety (Parker et al, in press).
Remote consulting must be about inclusion not exclusion. Inclusion health has been described as, ‘…a research, service and policy agenda that aims to prevent and redress health and social inequities among the most vulnerable and marginalised people in a community’ (Royal College of Physicians, 2020). The argument that the NHS
is there for all to access as they like just doesn’t hold up. Often, the people with the greatest needs struggle to access services in the way they are presented. We need to acknowledge that engagement is a two-way process and therefore be more active in including people and removing the barriers which actively exclude.
Let’s think about holism
One of the biggest issues with medicine is that it has, for a long time, been just that – the provision of medical care. At medical school we learn how to spot patterns of symptoms which, together, allow us to make a diagnosis of disease to which we then apply the appropriate medical treatment and our job is done. A reader of this journal will spot the obvious flaw. While we learn, in detail, the pathophysiology of disease in the organism, little consideration is given to the social and environmental causes. Some consideration is given to the effect of the disease on the patient and increasingly we talk about shared decision-making and joint management plans, worked out in consultation with the patient, but these are still fairly scarce compared with the ‘take this for this many days and come back if it doesn’t get better’ model.
Treatment in context
Sometimes this works, often it doesn’t. If I had a ‘simple’ chest infection, a brief description of my symptoms, an examination and a five-day course of antibiotics might sort my problem. Add in any complexity, however, and the model falls apart. Try applying the same process to anyone with depression for example. Even the ‘simple’ chest infection would benefit from better understanding of context. Why do I have a chest infection? Perhaps because I live in damp, mouldy housing, which I cannot afford to heat. Perhaps I smoke. Perhaps I smoke because everyone around me smokes and I’m stressed and depressed. Why? My financial situation is precarious. I worry about being able to pay for food. I have a job but having to self-isolate due to this cough may mean I lose income. If I can’t pay the rent I become homeless.
If we place the infection in the context of an actual person and their life everything changes. We realise we are treating the symptom rather than the disease and if we want to sort the problem, we need to reach deeper into the underlying causes. Antibiotics won’t address the unhealthy housing or the smoking which underlie the illness or the poverty which has led to both of those. Often we can approach the causes but we’re not always set up to, and many doctors argue that it isn’t our job. So we continue to treat the symptoms and act surprised when they don’t get better or keep recurring. Figure 3 shows how we do better.
This model suggests healthcare contributes just 20% to making people healthy. Only 10% is quality of care so we should be the best doctors we can, but we can do a lot more. We’ve discussed access – just include and stop excluding and we’re back up to 20%.
Health behaviours
We could do smoking cessation better if we ask why people smoke and address the causes. Same for alcohol. Even more so for drugs. As a junior doctor on the orthopaedic wards I met the same woman again and again who kept breaking bones. Her surgeons complained about her poor bone quality and how it made surgery much harder but they did a great job of repairing each fracture despite the technical difficulties. Her bones were brittle because of how much she drank and she kept breaking them because, when inebriated, she would frequently fall. We didn’t ask why she drank. We fixed the fractures, we never actually addressed her problems. But we could. So let’s see how.
Diet is important and directed by many factors other than just individual choice. A family in the poorest 10% in England would have to spend 74% of its disposable income on food to meet the government’s healthy eating guidance (Scott et al, 2018). How then would they buy clothes, shoes or the things the kids need for school? Look at the distribution of fast food outlets by an area’s socio-economic status to see how individual choice is subsumed by availability. All of this we can influence.
Sexual health is another health service function where we could get further upstream. Here but also more generally the NHS must enable promotion of keeping healthy and not just be a vehicle for treating illnesses. This re-focus on prevention is vital, and it must not aim only at individual behaviours but seek to nudge communities towards health. Enhancing public health should be a consideration in any plans involving schools, transport, parks and more, to positively influence social determinants of health. Once their crucial importance is recognised health creation can begin to share the space occupied so inadequately by healthcare alone.
Are social and economic factors healthcare’s remit?
Certainly. We can help with education and not just health education or health literacy.
As Nelson Mandela says, “Education is the most powerful weapon which you can use to change the world.” Education is the key to eliminating gender inequality, to reducing poverty, to creating a sustainable planet, to preventing needless deaths and illness, and to fostering peace.
Arne Duncan (2013)
Children excluded from schools may fall prey to gangs that recruit them. And so contact with the criminal justice system begins. But this is could be prevented
were we to ask why, and identify a solution. The behaviour of disruptive’ children may be the result of an undiagnosed learning difficulty or unmet educational needs; or the consequence of a disrupted home life. Liaison between doctor and school could avoid exclusion and allow a better educational and hence better life and health outcome for these children. This takes time but the early investment will pay lifelong dividends.
Getting people into or back to work is a huge boost for mental and physical health. A doctor can get someone well enough to work or use fit notes with recommendations for workplace adaptations or amended duties. Better still, we can together work out what it was about work that made a person ill, and work with the employers to rectify it.
We repeatedly return to poverty causing ill health and we know that reducing poverty improves health. The Deep End movement in Scotland put a financial advisor into practices. From 276 referrals they generated £850,000 of income – all benefits people were entitled to but weren’t getting (Sinclair, 2017). All this avoidable poverty was changed by doctors who saw health benefits beyond the prescription pad.
Family and social support
Loneliness causes early mortality (Rico-Uribe, 2018) so preventing it is truly a form of health promotion. Social prescribing can really help and is on the ascendency. We may have to work harder, however, than simply saying, There’s a men’s group on Thursdays. You should go. People become withdrawn for reasons that may need addressing or they may just need someone to go with them that first time. Some doctors argue that we’re already too busy and lack capacity for any of this; others that as we haven’t been trained we make poor social workers. If we are to work at these beyond-theprescription-pad levels we and the system will have to change. We are seeing that happen already with new roles, such as linkworkers, focused care practitioners and social prescribers joining the primary care team.
Care in the community
Community in healthcare terms has come to mean all the stuff that doesn’t happen in hospitals. We tend to forget the real meaning of community and its power to create health, perhaps because we mostly train in hospitals and around hospital-related specialties and interventions. Though even our sickest patients spend only a small fraction of their lives in hospitals, and very little time in contact with a GP, we remain oddly hospital and prescription oriented in healthcare. Now, slowly, medical schools are re-orienting healthcare students towards the social determinants of health and how to address them. As Jackson and Purvis (2020) say, good health outcomes find their foundations in good social care and self-care.
All our healthcare efforts are small compared with the self-care and care-for-each-other that happens in the community. Covid has reminded us we are part of communities and those communities, working together, can go a long way to protecting their members’ health and wellbeing. Volunteers from our community going door-todoor shifted the balance for testing and regaining control locally. We just lent them our community room as a base.
Air and water quality? Housing and transit? We can help. At the individual level a doctor’s letter stating that someone’s mobility is impaired by arthritis can get them a bus pass and expand the world that is accessible to them or boost their priority in the housing list for a bungalow they can get around. Or we could be like the psychiatric nurse who, on finding that their client’s house was flooded with sewage, refused to leave the housing office until it was sorted – which it then was, the same day. At a larger scale we can advocate, not just for our individual patient’s issues, but about the issues that affect them all – like air pollution. As healthcare workers we have a platform, with a stethoscope around our necks, that gives us an influence many don’t have, which we can use for the good of our patients.
The person-centred care approach gives people more choice and control in their lives by providing an approach that is appropriate to the individual’s needs. It involves a conversation shift from asking “what’s the matter with you” to “what matters to you.”’
(RCGP, 2019)
Person-centred care
Person-centred care is on the lips of the NHS at present and it’s in our hearts. Alas, often because time is short, it is less evident in our actions. Its ethos of working alongside patients, lending them our medical expertise but empowering them to take control of their health and prioritising the issues important to them is very much part of the holistic re-imagining we have discussed. But it’s labour-intensive. Those stockpiles of unused medications filling cupboards that we find on home visits testify to all our unasked for medical interventions and the importance of engaging slowly with ‘the patient agenda’ rather than handing over the swift prescription. An NHS more oriented to the needs of the patient, or better still, the person, shouldn’t sound so far-fetched: in fact it would waste less and succeed more often.
When I re-imagine how our National Health Service might look, learning from the Covid pandemic but also in view the many long-term challenges to health that society will have to face, I see the NHS using all the strengths it already has, but re-oriented: re-oriented towards working in partnership with people, as part of communities, and focusing more on the people with the greatest needs, to deliver healthcare and create health, and build the conditions which maintain health in the future.
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