PATIENTS

Early dialysis – not very diverse

The famous photo of the ‘Lucky Thirteen’ shows the first people to be treated by chronic dialysis at the Royal Free Hospital in the early 1960s. All thirteen are of White European heritage, twelve are men, none are older than their forties.  Clearly the selection of these first patients to be offered dialysis could be regarded with 21^st century eyes as discriminatory. But it is of course not possible with hindsight to understand or balance objectively the very many factors which may have influenced their selection. For example  the attitudes and expectations of the patients and their families, of the renal unit staff, and of the many health professionals in primary and secondary care who may have influenced the patients’  journeys before they arrived in the renal unit. Nevertheless throughout the early development of RRT programmes in the UK (and in almost all other countries) there was conscious discrimination to select the minority deemed most suitable for treatment –  and among the discriminants used were age per se, as well as the potential to manage home dialysis, and  suitability for transplantation.

Increasing diversity 1980-2000

As RRT became an accepted treatment, and facilities and resources  expanded, a wider net was cast. Those who could not be transplanted (most commonly due to the comorbidity that comes with age) and those who had neither the capacity nor the support to manage home dialysis, were soon being  offered dialysis. This offer was made possible by the slow expansion of centre HD facilities, as well as the rapid growth of dialysis which accompanied the arrival of PD (link). The true demographics of ESRD as a disease of the elderly became obvious, and by the late 1990s, if age  had earlier been a major discriminant used to withhold treatment, it was in most units no longer so.

Another important diversity among those with ESRD emerged As facilities for dialysis grew.  In urban areas with growing black and minority ethnic populations, those of non-white heritage seemed to be overrepresented  among  dialysis patients. This was confirmed by epidemiological findings in the 1990s, the first  coming from Leicester & Hammersmith studying the large South Asian populations they served [1] [2]. ESRD proved to be 3-4 times more common in South Asians than in Whites, an increased risk exaggerated further among this with diabetic kidney disease; there were similar increases in  African-Caribbean populations. Despite a substantial research effort, there is still (2024) incomplete understanding of the relative contributions of genetics and environment (including fetal environment) to explain this difference, and the extent to which increased ESRD risk in different ethnicities is a reflection of socio-economic disadvantage. The state of knowledge in in the late 1990s was well described in a position paper written for National Kidney Research fund (NKRF) by Liz Lightstone in 2000 [3].

As more and more non-white populations in the UK and  around the world are found to have a higher prevalence of ERSD, it is probably time to reframe the research question from a  more global perspective: ‘Why are those of White North European heritage relatively protected from ESRD?’

In many ethnicities an important expression of diversity is the  cultural distinctiveness which influences heavily attitudes and expectations about chronic health problems and their care. For example expectations about the suitability of non-dialysis care, about dialysis withdrawal, and about the practicalities of end of life care at home.

Discrimination

There is then marked diversity, but the kidney community had to face the question whether there was also discrimination (witting or unwitting) in the provision of care to those from ethnic minorities. Was there inequity in access to dialysis or to transplantation?  Was there a lower chance of being wait listed for transplantation?  There were certainly lower living and deceased transplant donor rates  among minorities. There may be limited health literacy in those without English as first language, and therefore the need to adapt patient information and education to those whose culture and language differ so much from the majority population. Care was continually  needed,  in a pressurised clinical service facing growing patient numbers, to ensure that the additional time and effort which may be necessary to optimise diverse care were not squeezed out.

Diversity and discrimination continued to be  live issues. In 2003 Ram Gokal (nephrologist in Manchester and himself of South Asian heritage) gave a lecture at an EDTNA meeting which covers with care  the situation as he then he saw it. (Download (pdf 1.1 Mb) Gokal 2003 Culture ethics race)

A 2018 reassessment commissioned by Kidney Research UK (formerly NKRF) and led by Fergus Caskey and Gavin Dreyer underlined the important of continuing to  document  diversity (for example through the UK Renal Registry), framing the right research questions,  and maintaining vigilance  against discrimination.  They also emphasise that health inequalities are by no means  only among ethnic minorities but other groups, for example the homeless and those in prison, face inequality and discrimination. (Download (pdf 2.2 Mb) Health Inequalities 2018)

STAFF

Opportunity and appointments

Those first exclusively white dialysis patients were treated by a  workforce that also at that time had limited diversity.  Of the first one hundred consultant nephrologists appointed in the UK, only one was of non-white heritage, and only three were women. The great majority of nurses and other health professional in the early multidisciplinary kidney care teams were white women. These distributions were not different from any other medical speciality, and reflect the demographic of those who went through medical or nursing schools in that era.

Those early years are unrecognisable from the workforce in 21^st century renal units. Younger consultants are now diverse in race and gender, mirroring the diversity among medical school entrants in recent decades, as well as the opportunities for migrant health professionals to be welcomed to the UK to settle and practice.

There has then been progressive diversity in the UK renal workforce. But has there been discrimination? There has, though perspectives of its impact on individuals varies.

• The personal account by Ram Gokal (of South Asian heritage) of his experience when applying for jobs as a consultant nephrologist in the UK around 1980, and later once he had been appointed in Manchester. He describes undoubted racial discrimination, but was appointed as consultant, and became influential and respected, including internationally.
• Jo Adu was another member of the cohort trying to get a consultant post at the same time as Ram. Jo Adu’s reflection is more upbeat.
  

In the 2020s we have confidence that such behaviour among health professional in the NHS is in full retreat, but we need constant vigilance to seek it out and prevent it.

Discrimination by patients

Within a self-conscious sophisticated workforce bound by contract and NHS culture it should  be possible  to challenge and ostracise inappropriate discriminatory behaviour, to whichever minority it is addressed. There are however still a very small number of  patients  who will express their bigotry, most commonly racial bigotry,  patients objecting to being seen by a doctor or nurse from any racial group other then their own. Sensitivity to the possibility of discrimination is an important first step, but the whole kidney community must remain vigilant to all expressions of discrimination and root them out.

References

1. [1] Lightstone L, Rees AJ, Tomson C, Walls J et al. High incidence of endstage renal disease in Indo-Asians in the UK. QJM 1995;88:191–5
2. [2] Feehally J. Ethnicity and renal disease. Kidney Int 2005; 68: 412-424
3. [3] Lightsone L. Preventing renal disease. The ethnic challenge in the United Kingdom. Kidney International, 2003, 63:S135 – S138

Authorship

by John Feehally

Last Updated on September 12, 2024 by neilturn