The NHS is the greatest expression of social solidarity anywhere in the world: it is not just that we stand together but what we stand for. For fairness, empathy and compassion. It is for these reasons that we all care so deeply about its future.
Just because you have a medical degree it doesn’t mean that you can understand health. If you want to understand why health is distributed the way it is, you have to understand society.
Last year Ali got a job, his first in a decade. His life had new meaning and purpose. His social circle expanded, he started taking care of himself, stopped drinking alcohol and started eating better. He lost weight and his diabetes improved dramatically. He was able to safely stop two diabetic medications and one for blood pressure. He felt much happier. He stopped abusing his wife, Maryam. Maryam’s chronic pain and generalised anxiety lifted. She stopped going to the pain clinic and stopped seeing her psychologist. She stopped two regular painkillers, and halved the dose of her antidepressant. She felt a lot better. She started paying a more attention to her children. She started visiting her son, Mehmet, her son, who is unfortunately still in prison for gang-related violence – but he is due out next year. Ayse, her daughter is 17. She is living in a hostel, having been thrown out of the family home after getting pregnant last year. Her dad won’t talk to her yet, but Maryam has started meeting with her without his knowledge. The social impact of getting a job is profound, but in the context of a vulnerable life lived in an age of austerity, is also partial and provisional.
There is a popular school of thought that says it’s impossible to understand what it is like to be someone else; a patient, if you’re a doctor for example, or a muslim woman if you’re a white man, or a single mum on a Glasgow estate if you’re a stockbroker in Surrey. I subscribe to a school which believes that empathy is not some fluffy disposition, but is something that comes with the hard work and emotional labour that goes into trying to understand and appreciate the lives of others. This school advocates reading fiction and literary criticism, spending years getting to know patients, and other people who are not like us, and listening to more experienced colleagues like Scotland’s recently retired chief medical officer, Sir Harry Burns.
Understanding the lives of vulnerable people
If we are unable to understand the lives of vulnerable people, we will never appreciate why we need the NHS, and in particular why primary care and continuity of care are so important. Vulnerability is an almost entirely preventable cause of ill health and premature death, of greater significance in terms of risk to health, than smoking, obesity, alcoholism or drug abuse. The amount of vulnerability (chiefly due to deprivation) influences not just the amount of illness people suffer from, but the types of illnesses and the age at which they experience them. People in the most deprived communities suffer more disabling ill-health, more mental ill-health and more social ill-health (like loneliness which is more harmful than smoking or obesity) and do so 10-15 years earlier, than people in the least deprived communities. Problems are compounded by low literacy and numeracy. Even though they die up to 20 years earlier than people in the wealthiest communities, the most disadvantaged still spend more years in ill-health than those wealthier people who live longer (The Costs of Inequality). The consequence of this is that costs saved by early mortality are exceeded by the costs of illness during their shorter, sicker lifetimes. It has been recently estimated that up to £4.8bn could be saved to the NHS if the poorest had the same health and life expectancy as the wealthiest.
Interactions with GPs and other healthcare professionals are characterised by frequent, complex consultations with multiple problems, a shortage of time, low expectations, lower enablement, poor health literacy and practitioner distress (Watt). Consultations where I work are further complicated by language barriers, intoxication, somatisation and social needs. Health services in deprived communities receive no more funding than the wealthiest areas, despite the massive differences in need. This is why Professor Graham Watt from Glasgow’s Deep End GP project says the Inverse Care Law is,
the result of policies that restrict access to effective needs-based care. It mainly effects patients of low socioeconomic status with multimorbidity, who have a mix of physical, psychosocial, and social problems, and consequently need time, empathy and a holistic patient-centred approach to care.
What does it mean to be vulnerable?
A study published in in the Nursing Times in 2008 looked at a service to support vulnerable pregnant women. Of the women surveyed,
● Over half (58%) had injected drugs; ● Just over half (52%) had never worked; ● Nearly one-fifth (18%) were homeless; ● Just over one-fifth (21%) had been in prison; ● Nearly one-third (30%) had outstanding court cases; ● Two-thirds (66%) lived with a partner; ● Just under half (46%) lived with other substance misusers; ● Nearly two-thirds (62%) lived with dependent children; ● The majority (80%) were abuse survivors.
These women may appear to represent a particularly severe end of the vulnerability spectrum, but several interesting things stand out. For one, vulnerability is complex, involving material, social, physical and psychological factors. Secondly, adverse experiences in early life predispose to lifelong vulnerability. Thirdly, vulnerability predisposes to vicious cycles of cause and effect – abuse and deprivation increases the risks of getting involved in drugs and crime, which lead to imprisonment and unemployment, leading to deprivation and so on. Fourthly, vulnerable people are usually surrounded by other vulnerable people, including children who will themselves be and quite likely become, vulnerable. And finally, that coping with vulnerability is very hard, and so along with vulnerability must come resilience.
Deprivation is one of the main causes of vulnerability. To be deprived of money, housing, employment, education, health, social contacts and liberty are undoubtably causes of vulnerability, but vulnerability also includes intrinsic factors like race and gender, and physical and intellectual capacity. Some people are born vulnerable. This ‘resilience matrix‘ for children shows how intrinsic qualities and environmental factors affect vulnerability and resilience.
Vulnerability and resilience aren’t necessarily different poles apart on a spectrum. There are different conceptual relationships between vulnerability, resilience and adaptive capacity included in this brief presentation, and illustrated below.
Although this relates to community resilience after natural disaster, it is just as relevant to the health and wellbeing of individuals and communities faced with poor housing, high rents, few jobs, poor schools, high levels of violence, drugs and alcohol, cheap junk food and a lack of cooking skills or facilities, high levels of pollution and high levels of mental ill-health. The presentation from which graphic above is taken goes on to list the components of vulnerability as,
- Exposure: The degree, duration and/or extent to which the person/ community is in contact with or subject to stressors (like material poverty, abuse, neglect, stigma, unemployment, incarceration, intoxicants, pollution, poor diet etc)
- Sensitivity: The degree to which they are affected by exposure to these stresses
- Adaptive capacity: Their ability to adjust, moderate damage, take advantage of opportunities and cope with changes bought about by these stresses
These different conceptions of vulnerability, resilience and adaptive capacity help situate vulnerability in social contexts. They also help us recognise that vulnerable people don’t just need protection, but also enablement and empowerment.
Resilience and empowerment
Harry Burns, recently retired Chief Medical Officer for Scotland, quotes Aaron Antonovsky in a couple of wonderful lectures linked at the end of this blog. Antonovsky is known for his conception of salutogenesis. He studied survivors of Nazi concentration camps, and the 30% who appeared to be most resilient had in common,
a sense of coherence that expresses the extent to which one has a feeling of confidence that the stimuli deriving from one’s internal and external environments in the course of living are structured, predictable and explicable, that one has the internal resources to meet the demands posed by these stimuli and finally, that these demands are seen as challenges, worthy of investment and engagement
The opposite of this is a sense of alienation, described by James Reid in his Rectorial Address to Glasgow University in 1972,
Alienation is the precise and correctly applied word for describing the major social problem in Britain today. People feel alienated by society. In some intellectual circles it is treated almost as a new phenomenon. It has however been with us for years. What I believe to be true is that today it is more widespread, more pervasive than ever before. Let me right at the outset define what I mean by alienation. It is the cry of men who feel themselves the victims of blind economic forces beyond their control. It is the frustration of ordinary people excluded from the processes of decision making. The feeling of despair and hopelessness that pervades people who feel with justification they have no real say in shaping or determining their own destinies.
Where I work, in a mixed, but mostly deprived inner-city practice, ‘alienation’ is the major social problem today. The following factors contribute to vulnerability, resilience and adaptive capacity.
- Childhood experiences
- Gender and Race
One leads to another. People who are themselves deprived are more likely to live in neighbourhoods with other deprived people, with higher levels of pollution, more drugs, violence, junk-food, poor schools, inadequate housing and so on. People with a low IQ are more likely to suffer mental ill-health and people with mental ill-health die prematurely from physical ill health. To be vulnerable is to be tossed around eddies of vulnerability.
Material factors include housing, finances, household goods, communication (phones/ TVs/ internet etc.), clothing, food, and utilities. It also includes the quality of the built environment such as green spaces, safe neighbourhoods, good schools, clean air, and good quality affordable transport.
I look after a lot of homeless patients, most of them are unofficially homeless, couch surfing or sleeping on public transport, in A&E departments or in their cars. There is such a shortage of affordable housing that the waits are now so long, as to be effectively indefinite. Overcrowding and inadequate housing are also prevalent. Housing is so desperately short and expensive that one of the main reasons we cannot recruit GPs is that it is too expensive for them to buy a family house within a reasonable distance.
Many of my patients are in debt – behind on their rent, or more frequently in debt to mobile phone companies, friends, family, loansharks or dealers. More than a few resort to crime or prostitution to try and get themselves out of debt. Michael Marmot explains the concept of Minimum Income for Healthy Living as follows,
A minium income is not only what is necessary for food and sheelter, but what is required to live a life of dignity and to take one’s place in society
Hoxton Street, like many streets in impoverished neighbourhoods, is full of cheap takeaways. A lot of homes I visit have no cooking facilities, many are sparsely furnished while others are dangerously cluttered with boxes and bin-bags. Many of my patients don’t have decent footwear, adequate for a wet day in an English winter.
Most people spend their lives surrounded by other people from their own social class, myself included. When I grew up the only doctor we knew was one for whom my mum happened to be a secretary. We didn’t know many professional people – nobody in my family from my parents’ generation had done A-levels, much less gone to university. Most of my patients would never come a across a doctor other than as a patient, while most professional people can count among their social networks people who are well connected, influential, powerful and relatively wealthy. This social capital is one of the main reasons that people with power tend to become more powerful. Not speaking English as a first language and ethnic minority status, (or even being black or brown skinned) are also barriers to making influential social contacts. Yassmin Abdel-Magied’s wonderful Ted Talk emphasises the importance of mentoring young people who ‘are not like you’ as a way to help young people move up the social hierarchy.
Violence is a daily reality for many of my patients, trapped in violent relationships, gangs and dangerous neighbourhoods. Fear of crime follows a steep social gradient; in the most deprived communities a third of people are afraid of mugging compared to less than one in fourteen in the least deprived communities (Marmot). This leads to people spending less time outside exercising or socialising. Many of my elderly patients don’t like to come out after dark. Shifting our appointments to meet the needs of ‘working people’ hasn’t helped the elderly and afraid.
Loneliness is not the same as being alone, although many vulnerable people are both isolated and lonely. Loneliness includes the harmful cognitive effects of low self-esteem, shame and depression with a tendency to be suspicious of others’ attempts to be socialable. Chronic loneliness, damages sleep, leads to depression and increases the risk of an early death by 20%. It cannot be cured by setting up groups with other lonely people, because they need help to change they way they feel about themselves and others, and this takes more complex theraputic interventions. I’ve written more about caring for lonely patients here.
People with a low IQ have higher rates of almost all mental illnesses and people with mental illness have higher rates of many physical illnesses (APMS 2014). Many of my patients have learning difficulties, many more are illiterate and innumerate and even more have very low health literacy. These problems cut ethnic and social divides, although they are strongly associated with deprivation. The ability to make yourself understood as well as understand the bureaucracy of a modern welfare state, varies very widely. GPs in deprived areas spend a huge amount of time helping people who struggle with this. Education appears to have less of an effect on intellectual ability, than on opportunity. Private schooling enables children who have the good fortune to have been born wealthy to benefit from smaller class-sizes, superior facilities and the chance to flourish. Selective education also deprives less wealthy or less able children and their families of the social contacts that contribute to resilience and success.
Chronic pain and depression are among the most debilitating conditions my patients suffer from, especially when they contribute to a spectrum of multi-morbidity. Neurological conditions like Parkinson’s disease that affect movement and balance make getting around in crowded streets a frightening experience and it’s not unusual for people to avoid going out as much as possible. ‘Frailty’ affects 10% of people over the age of 65 and 50% of those over the age of 85. It is defined as age-related decline affecting a range of functions including muscle strength, endurance, sight, hearing and cognition. At any age, bowel diseases like Crohn’s mean that every trip has to be worked around where the nearest toilets are – sudden bouts of bloody diarrhoea can come on without warning. Trying to get into a disabled toilet for someone with colitis can (and does) provoke abuse from strangers who cannot understand a disability they cannot see. Incontinence is very common – most of my patients have been suffering for a year or more before they pluck up the courage to tell me about it and ask for help. Respiratory and cardiovascular disease can severely limit how much someone can exercise. People now live for years with cancer, often with residual symptoms of pain, weakness and fatigue as well as fear of recurrence.
The commonest psychological problems patients suffer from are anxiety and the associated spectrum of social phobia, agoraphobia, panic attacks, OCD and depression. Mental health disorders are more than twice as common in the most deprived communities. All of these can exacerbate social isolation, make patients reluctant to seek help and reduce their ability to care for themselves and others. I meet many adults who have always severely struggled to cope with social situations who have never been assessed for autistic spectrum disorders. Personality disorders and shame are also highly prevalent and frequently associated with adverse childhood experiences.
Adverse Childhood experiences
Being the victim of abuse including sexual abuse, physical violence, emotional abuse, and neglect as well as witnessing domestic violence, drug and alcohol abuse and criminal behaviour are associated with harm that extends into adulthood. The damage is not just psychological, but also physiological – stress in childhood affects cognitive, immunological, neurological, endocrine and genetic development. The large, Welsh adverse childhood experiences (ACE) study published last month showed that,
Adults up to the age of 69 years that experienced four or more ACEs are four times more likely to develop Type 2 diabetes, three times more likely to develop heart disease and three times more likely to develop respiratory disease, compared to individuals that report no ACEs.
The report also found that over a 12-month period, those with four or more ACEs were three times more likely to have attended Accident and Emergency units, three times more likely to have stayed overnight in hospital, and twice as likely to have visited their GP, compared to individuals with no ACEs.
These problems happen, even when lifestyle factors like diet, smoking and obesity are accounted for, but adverse childhood experiences are strongly predictive of unhealthy behaviours as well:
As if this wasn’t bad enough, exposure to air pollution in childhood leads to a four-fold increase in the likelihood of having impaired lung function in adulthood. It is responsible for coughs, wheezing and asthma, resulting in higher consultation rates in GP and A&E departments. It may lead to lifelong cardiovascular and neurological harms.
Gender and Race
This is a huge area, beyond the scope of this blog, suffice to say that omen tend to have more illness than men, especially mental illness, although they live longer than men. They are more likely to be unemployed or in insecure, low paid employment and are paid less than men for doing the same job. They bear the brunt of domestic violence and sexual violence and have greater health needs related not only to childbearing and menstrual problems, but also, significicantly, mental health.
Ethnic minority groups have greater difficulty accessing care, are less likely to receive medication and other medical interventions like screening that they might benefit from and are less likely to be involved in decisions about their health. They also are less likely to be referred for investigations or specialist review. About 20% of the patients I look after do not speak English and consultations are complicated by having a third-party translate. A lot is lost in translation, making things harder for patients and professionals.
Vulnerability and general practice
As noted earlier, interactions with GPs and other healthcare professionals are characterised by frequent, complex consultations containing multiple problems, a shortage of time, low expectations, lower enablement, poor health literacy, and practitioner stress.
GPs looking after the most vulnerable patients have to manage twice the rate of mental health problems as their colleagues in the wealthiest areas. Chronic pain, medically unexplained somatic symptoms, language barriers and intoxication are common problems, as well as those listed below:
(slide taken from this presentation by Professor Graham Watt).
It is not unusual to have to deal with two or three of these problems, in addition to the physical complaints that my patients bring in. Practices that have a rule, of one problem per consultation discriminate against vulnerable patients who almost always have multiple, inextricably linked problems. GPs from the Deep End practices, dealing with similar patients identified three needs,
There is a simple and important difference between complex and complicated. Something that is complicated can be understood by breaking it down into its constituent parts. Something that is complex, cannot be understood by looking at parts in isolation because they are all interwoven and inter-dependent. This is why it makes little sense to try to replace a holistic generalist doctor with several sub-specialists. Far better to give the generalist and the patient more time to spend with each-other.
For General Practice to be at it’s best requires adequate funding, which it is not. It requires adequate staffing, which very frequently, is inadequate. It requires a commitment to continuity of care, which is too rarely present.
The graph below (from Scotland) shows how mortality and physical-mental comorbidity (complexity) is far higher in patients attending practices in the most deprived areas, with no adjustment in funding:
Research from East London (where I work) has shown that someone aged 50 in the most deprived quintile consults at the same rate as someone aged 70 in the least deprived quintile
This level of complexity means that GPs are attending to multiple problems in the majority of consultations. Providing holistic, person-centred care, by doing the work of counsellor, physician, pharmacist and technician, while bearing witness to another small chapter in a patient’s life history, in little more than ten minutes, means that GPs attending to vulnerable patients are extraordinarily good value for money. We recently looked at about 200 appointments to see how many other people might have been necessary for each consultation if the GP wasn’t there, typically it was two or three. Without us, care will be more fragmented, time-consuming, less holistic and more expensive.
What can we do – as GPs, policy makers and patient advocates?
- Know the evidence on social determinants of health. Start with the reading list below. Bring it into all your teaching, explain why some patients get sicker than others, younger than others, are harder to engage with care and are more likely to dies. Share the evidence with colleagues, politicians, and policy makers
- Teach medicine relevant to the needs of the most vulnerable: we need more (and better) teaching on mental health, multi-morbidity, chronic pain, and medical generalism
- Organise and network: Deep End GP is inspiring. Patients are not best served by GP practices being dogmatically independent. We need to network and work better together between practices, sharing resources and expertise. We need to work much better with community and voluntary services and the local hospital
- Campaign. Medicine is a science and politics is nothing but medicine on a large scale. The inverse care law is not a law, it is an unjust policy that deprives the poorest people of the resources they need
- NB http://blogs.lse.ac.uk/politicsandpolicy/can-innovation-address-healths-hidden-dimension-in-cities/
Early life socioeconomic adversity is associated in adult life with chronic inflammation, carotid atherosclerosis, poorer lung function and decreased cognitive performance: a cross-sectional, population-based study. BMC Public Health