Deeply saddening recent cases such as that of two-year-old Awaab Ishak and victims of serious maternity care failings have left a vivid impression on many people. They are a stark reminder of why health and social care research, in partnership with local people, should take on board the human cost of inequalities.
I can remember many scandals over the years in healthcare, social care and public services with a role in health, as well as less headline-grabbing lapses affecting people I know. I have also come across many instances of impressive practice, on a large and small scale, and breakthroughs in knowledge which have benefited people with a range of conditions.
When things have gone badly wrong, lacking power as a patient or service user has usually been a factor – yet all too often, there have been extra reasons why, in subtle or blatant ways, some people have been treated as not mattering so much. And when there have been notable successes, these have been not only due to technical skill and mental or physical effort but also, often, willingness to listen and engage across differences.
Each tragedy or triumph has a human face. Examining ways to reduce health and care inequalities and strengthen equity, diversity and inclusion are (or should be) about far more than ticking boxes or sounding virtuous. To reduce avoidable suffering and promote everyone’s wellbeing, it may sometimes be necessary to recognise failings in institutions and wider society, not just individuals, in addition to celebrating and learning from what has worked well.
Amidst a cost-of-living crisis and when services are under strain, research may be seen as an unnecessary luxury, especially if focused on the needs and experiences of particular sections of the population. Yet at such times, deepening understanding of how health and wellbeing can be improved so as to make a difference to people’s lives is all the more important, which may mean looking at why some people tend to miss out. For those active in this type of health and care research – whether staff, patient, service user, carer and public contributors or community partners – communicating what we do, and why it is of value, even if findings are sometimes uncomfortable or of seemingly niche interest, can be important.
All humans are vulnerable to some extent. Anyone can find themselves facing ill health, frailty or the need for support in meeting basic needs. Yet some are at greater risk than others or, if requiring help, are less likely to get what they need. This applies to preventing illness and injury – often linked to factors such as poverty, poor housing, environmental issues, harassment and violence – as well as to health services and social care. Despite huge advances in science and technology which have benefited many, sometimes seemingly obvious opportunities are missed. To many in south London and elsewhere, this may seem glaringly obvious, especially for those directly affected, with family and friends who are or who regularly care or advocate for people in such situations.
Yet some people, including key decision-makers, may lack such experience; be in denial of the seriousness of problems or the inadequacy of what is on offer; or face limits to what they can do in the face of systemic injustice which goes far beyond individual shortcomings. Even those who persist in seeking to reduce inequalities affecting health and wellbeing can get caught up in unhelpful competition as to who is worst off and most deserves more attention or resources (e.g. is it younger children or older adults needing extra care?) At times of rapid social change when many people feel insecure, rivalry and scapegoating can flourish.
Working out how to improve health and wellbeing for people with varying health and care needs, or at least prevent these from deteriorating faster, may not always just be a matter of applying ‘common sense.’ It may require sustained work by diverse researchers and contributors with lived experience.
Also working out how to improve health and wellbeing for people with varying health and care needs, or at least prevent these from deteriorating faster, may not always just be a matter of applying ‘common sense.’ It may require sustained work by diverse researchers and contributors with lived experience. Research based on asking searching questions, especially if this draws on knowledge from different sources and findings are shared in accessible ways, can be extremely valuable and sometimes help to shift public thinking on key issues.
Economic disadvantage and discrimination can damage health directly, as well as affecting people’s physical and social environment and access to appropriate care. People requiring social care or with multiple health issues would often count as disabled people. Yet despite various legal duties around inequalities, these persist and can grow worse.
Sometimes, as for Awaab Ishak , prejudiced assumptions with devastating effects are laid bare. At other times, routine sidelining, for instance on grounds of age and disability, can be the backdrop to grim cases such as that of George Lowlett and others at the same care home. Safety scandals in mental health and learning disabilities services continue. Sadly these cases, and others which have received national attention, will remind some South Londoners of painful experiences among their own families and friends.
There can be overlapping factors. While women expressing concern during pregnancy and childbirth, and about reproductive heath in general, can be dismissed as making too big a fuss or even hysterical, some are at even higher risk of things going badly wrong. For instance findings on maternal deaths highlight how black women may be almost four times as likely to die; and the gap between women in the most and least deprived areas is stark and growing.
As a carer and community member, I have come across dangerous inequities all too often, yet also experienced what can be achieved by respecting diversity and equality, at personal and collective levels. For instance, especially in minority ethnic and lesbian, gay, bisexual and transgender communities, many of us are in extended 'families' with assorted 'aunties', 'uncles' or siblings to whom we may not be biologically related. When health professionals and care workers are willing to work with patients’ own networks of support, across cultural difference, these can be harnessed to powerful effect.
Research addressing inequalities may leave some people uncomfortable or wondering about relevance. Active involvement can help to explain, in human terms, why it matters so much.