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This blog post is based on an April 2022 event hosted by The Open University’s Centre for Ageing and Biographical Studies (CABS) in association with the Emerging Researchers in Ageing group of The British Society of Gerontology (BSG). The event involved a discussion between Dr James Nazroo (Professor of Sociology, University of Manchester, and Deputy Director of the ESRC Centre on Dynamics of Ethnicity), Dr Halima Begum (CEO, Runnymede Trust) and Sam Toolan (PhD student at The Open University and a Member of CABS and The BSG).

The discussion focused on health outcomes concerning racially minoritised older people in the UK, and was rooted in three questions:

1. What is the overall picture of health outcomes of racially minoritised older people in the UK?

Generally put, the gap in health between racially minoritised groups and the White British group increases dramatically with age. This means that differences in later life are very large, with common instances of racially minoritised people in their fifties and sixties having similar health profiles to White British people in their eighties. These inequalities are typically the result of disadvantages accumulated by racially minoritised people throughout their lifetimes. There are important variances to this overall picture, especially by ethnic group and disease, and there is also a widespread lack of good quality data available. This lack of data makes it harder to describe differences and understand their causes and, therefore, it acts as a barrier to developing effective responses.

In understanding inequalities in health outcomes, social and environmental factors – and especially the factor of racism – should not be overlooked. An integration or synthesis of perspectives within academia would be valuable in order that racism is incorporated more centrally. A lack of depth of understanding of the factor of racism prevents effective policy and public health responses. The term ‘systemic racism’ is too vague and talking about it can act as a barrier to understanding, whereas ‘structural’ or ‘institutional’ racism are useful in forming a more concrete understanding of processes. Indeed, meaningful change can only come through institutional change resulting in policies and attitudes that genuinely reflect the high levels of racial and ethnic diversity in UK society.

In helping her elderly father through a period of ill health, Halima encountered some of the challenges the systems and institutions of health present to racially minoritised people. This experience had raised her awareness of the importance of chronic pain in this context. As in other areas of health, notably severe mental illness, understanding how the racialised body is treated in clinical settings is critical to developing an effective treatment for chronic pain. As literature on sickle cell crises shows, racialised black bodies are perceived differently by health practitioners making them less inclined to prescribe pain medications. Practitioners wrongly perceive a heightened risk of dependency, a suspicion that pain presentations are not genuine, and/or a sense that black patients are more resilient to pain somehow. Black women’s experience of childbirth is another example where patients are less likely to receive pain relief. Addressing these myriad issues could be achieved, in part, through better data on the clinical experience of racially minoritised patients, and through clearer mechanisms for advocacy on behalf of racially minoritised people. This is especially the case for those in later life because of the combined effect of advocacy campaigns typically erring towards children and young people and a general under-representation of people from racially minoritised backgrounds.

2. What has COVID-19 taught us about health concerning racially minoritised older people, and what should society do differently in case of another pandemic?

The Pandemic exposed the large extent of health inequalities in terms of race and ethnicity, as seen very clearly in mortality patterns, with racially minoritised practitioners and patients significantly more likely to become seriously ill or die. Age and race generated a sort of double jeopardy in that racially minoritised older people were impacted very badly.

The response of Government to the Pandemic reflected their clear and active denial of racism in society. The initial phase of the vaccination programme prioritised care home residents and did not take account of racial inequalities despite recommendations by The Runnymede Trust and others. This flawed conceptualisation of risk would be valuably corrected in the advent of another crisis of this magnitude. Moreover, the NHS notion of ‘freedom at the point of access’, while important, is based on a universalism that does not account for inequalities. This should be acknowledged and addressed through the development of more needs-based health systems. Race and ethnicity must be starting points for prioritisation, not afterthoughts.

At the start of the Pandemic, the group of scientific advisors responsible for planning the response did not well represent racially minoritised people or those with that focus. Correcting that would be important should this happen again. An independent inquiry is underway into the Government response to the Pandemic and the inquiry does include coverage of the disproportionate risks faced by racially minoritised groups in its scope, following Runnymede Trust recommendations. The Pandemic showed that getting representation right is important when developing and applying policy.

During a Pandemic, academics can evaluate and respond to evidence but real change relies on organisations outside of academia, like The Runnymede Trust acted to take academic analysis into an advocacy capacity whereby policymakers are influenced. Strengthening academia and policy-orientated organisations in this respect would be a valuable contribution to civil society.

3. Is the current terminology concerning race and ethnicity satisfactory? How might it be improved? What would be gained and lost in changing it?

Over the past three decades, existing Census categories have been through a process of refinement but have also remained consistent in many respects. There is some value in keeping these taxonomies consistent as it enables comparison to be drawn over time, for instance to analyse longer term sociological processes and therefore to foster understanding of what may drive inequalities in health outcomes.

However, in some dimensions, terminology has been unsatisfactory for a long time. Ethnic groupings are crude in the sense that they do not capture the heterogeneity that exists within each group. ‘Black Caribbean’, for instance, assimilates a massive diversity of domiciliary backgrounds, engendering the erroneous assumption that people born into families with Caribbean heritage share many more commonalities than differences. Furthermore, ethnic groups do not always represent how people identify and yet Census procedures have not allowed people to write in their own ethnic group until relatively recently. Also, usage of the terms Black, Asian and minority ethnic (BAME) or Black and minority ethnic (BME) is now advised against by Government and by a growing community of academics and other commentators, but the absence of a consensus acts as a barrier to accurate communication. Relatedly, debating what terminology is acceptable can divert discussion away from improving health outcomes for racially minoritised people, which are consistently found to be worse than health outcomes of the White British group, irrespective of the types of measures used.

Nevertheless, capturing data on race and ethnicity is useful for monitoring inequalities, and it would seem that the work of refining and nuancing categories and terminologies will continue. It is not clear what could replace existing terminology and it is perhaps about increasing the availability of qualitative data to enable a more rounded ‘mixed methods’ understanding. Existing categories may be used to produce a descriptive understanding of health outcomes across groups, but to explain racial and ethnic differences, attention should be focused on the underlying processes of marginalisation and racialisation that have led to the pattern of inequalities. Realistically, quantitative data will always be limited to surface-level generalisms, with qualitative data needed to explain and elaborate. People’s lived experiences are therefore critical. While interested in general descriptions available through quantitative datasets, policymakers are perhaps more influenced by analysis that tells the story of people’s lives.

To finish, on the subject of data paucity concerning particular groups, Halima reminded us that,

“communities aren’t hard to reach: we’re just not trying hard enough”.