Learnings from 2020: The Importance of Prioritising Equity, Diversity and Inclusion and Addressing Health Inequalities in Epilepsy Care

It’s been over six months since the senseless murder of unarmed Black American man George Floyd and the subsequent international Black Lives Matter movement. During this time, the world was forced to open its eyes to racism, discrimination and injustice; however, just because this movement is no longer at the forefront of our daily news doesn’t mean that these issues have simply gone away. These problems are ingrained in our society and, just as we should expect a certain level of care and fairness from the police service, we should also feel certain that this applies to other sectors such as education and healthcare – but, are people always being treated fairly when they are at their most vulnerable state in hospital? The current COVID pandemic has opened our eyes to the health inequalities that exist in the UK and has made us realise that this isn’t always the case. So, what can we learn from undoubtedly the two most significant events of 2020 and how can we commit to true anti-racism in our healthcare practice in 2021.

The topic of diversity and inclusion is one I’ve always been passionate about. Maybe that’s because, as a mixed-race woman, I’ve been unable to escape issues surrounding race both within my personal life and my career within the healthcare sector. Over the past few years, I have juggled my career in Clinical Neurophysiology with efforts to raise awareness on these issues and to drive improvements surrounding equity, diversity and inclusion within the NHS.

 

I want to start by underlining the crucial importance of this topic - it’s more than the tick-box exercise we are forced to do as part of our NHS statutory and mandatory training and it’s more than just an extra-curricular activity for those who are interested in it. It directly translates to the wellbeing of our staff and the health outcomes of our patients; it affects all our lives and it must be a commitment that we all collectively make. The Black Lives Matter movement gave us no option but to accept the reality of issues surrounding race and racism, making us realise that ignoring, denying or even just considering yourself as not racist, was simply not acceptable anymore – we all have to make a commitment to be actively anti-racist.

 

Contrary to the seemingly common opinion that “racism isn’t really a problem in the UK”, we only have to look towards our healthcare system for evidence that this statement actually couldn’t be further from the truth. The reality of the matter is that, as a Black or ethnic minority member of staff in the NHS, you rarely see yourself reflected in positions of authority - in fact, Black and ethnic minority staff are still significantly under-represented in very senior positions and largely over-represented in lower pay bands (as shown below).

 

 

Figure 1: Percentage of staff by Agenda for Change (AfC) pay band and ethnicity for NHS Trusts in London, 2019¹

The more hard-hitting facts are that in 2019, just under a third of Black and ethnic minority staff in the NHS reported experiencing racism from their colleagues¹. In London, white applicants are 1.6 times more likely to be appointed from shortlisting compared to Black and ethnic minority applicants, yet the latter were 1.67 times more likely to go through formal disciplinary processes¹. In a more general study performed by The University of Manchester, it concluded that “Racism remains a widespread and endemic feature of everyday working life in Britain”².

 

“Over 70% of ethnic minority workers say that they have experienced racial harassment at work in the last five years, and around 60% say that they have been subjected to unfair treatment by their employer because of their race…Over 40% of those who reported a racist incident said they were either ignored, or that they had subsequently been identified as a ‘trouble maker’”²

 

Aside from these overt experiences, are the often daily microaggressions that Black and minority ethnic individuals face - the “did you really just say/do that?!” moments, the subtle indirect comments and behaviours that stay on your mind long after you’ve left the workplace and cumulatively wear you down, highlighting your ‘other-ness’ and making you feel like you’re in a never-ending battle – they’ll never understand and will just label you as ‘sensitive’ if you ever bring it up. These microaggressions largely go unreported; they are difficult to respond to and almost impossible to prove down the line – but ask any member of a marginalised group and I have no doubt that they will tell you about their impact.

 

 Figure 2: ‘Equity and Diversity’ is now the preferred term to describe the  consistent engagement in practices to ensure that all individuals have the opportunity to grow, contribute, and develop, regardless of their identity i.e. not simply treating everyone the same, but recognising and accounting for differences which may exist as a result of their identity and taking steps to ‘level the playing field’

The NHS was founded in 1948 and coincided with the post-war mass movement to Britain of once-colonial populations from the Commonwealth. After coming to the UK from Jamaica in 1960 as part of what’s now known as the ‘Windrush Generation’ (individuals across the former British Caribbean were encouraged to come and fulfil their responsibility to rebuild the ‘Mother Country’ after World War II, being promised jobs and the hope of ‘a better life’), my Grandmother dedicated over 30 years of her life to working in the NHS. She was very proud to do so and inspired subsequent generations of women in my family to follow suit. I often think about how different her experiences within the NHS must have been, and how, although science and medicine have massively improved since then, it is evident that we still have some way to go in improving the experiences of our multicultural workforce. The truth is, the NHS might not even be around today had it not been for the immigrants that helped to build it all those years ago; however, over 60 years later, I still hear alarming stories from colleagues who are facing issues of discrimination. I could share my own personal experience of racial abuse during my first NHS job, but well, that’s a story for another day… 

 

What really concerns me is how this translates to our patients; not only their experiences in the healthcare system but also their health outcomes. As I mentioned, the current COVID pandemic has only made this issue more prominent, with Black and ethnic minority patients two-to-three times more likely to die from the virus compared to white patients³. More specifically, death rates within Black African groups are 3.24 times higher than the general population³. This echoes evidence that Black British mothers in the UK are five times more likely to die in childbirth than white women⁴. These facts are impossible to ignore; although they may partly reflect socio-economic and physiological factors, the role of institutional racism is surely undeniable.

 

The recent death of African-American Dr Susan Moore became a symbol of the reality of racism in healthcare and the treatment biases associated with the pandemic. In the videos she took from her hospital bed while suffering with the virus and two weeks before she eventually passed away as a result of it, she reports on her experiences of feeling as though her pain was dismissed and her sense of deterioration denied prior to her inappropriate discharge from hospital. She states “I put forth and maintain, if I was white, I wouldn’t have to go through that…this is how black people get killed, they get sent home and they don’t know how to fight for themselves.”⁵ In response to the death of Dr Susan Moore, a popular Twitter thread presented a theory about the way in which racism manifests itself in healthcare – as ‘cumulative de-prioritisation’ over multiple seemingly small decisions relating to the triaging and allocation of often limited time and resources to patients (i.e. which patient is seen first…which cases are given to student nurses…whose room is visited more often…) Of course it’s not the case that any doctor would be so bold as to say “I provide less care to Black patients” but in this way, certain individuals end up receiving a lower standard of care than others.

 

This made me question the likelihood of a racial disparity existing in other areas of healthcare; specifically relating to my own field of Clinical Neurophysiology and epilepsy care. In the UK, there are over 500,000 people living with epilepsy⁶. We know that epilepsy affects people of all ages and backgrounds; however, recent evidence shows that epilepsy is the only neurological condition with a significant relationship between social deprivation and mortality⁶. People with epilepsy living in more deprived areas may be at 3 times higher risk of death than people in wealthier areas⁶. We also know that epilepsy is much more prevalent in deprived areas and that race and social deprivation are not mutually exclusive. Furthermore, gender appears to play a role, with men with epilepsy dying on average six years earlier than women with epilepsy⁷. Could these findings also reflect differences in the way we listen to, prioritise, diagnose and therefore treat patients? Could they reflect differing access to treatment options and medical expertise? Could they be a result of differences in the level of understanding and awareness of their condition or adherence to treatment plans?

 

Studies relating to race and epilepsy are scarce, particularly those from the UK. It is, of course, harder to measure epilepsy outcomes (does this include frequency/intensity of seizures, seizure freedom, quality of life, death..?) than it is for some other conditions. Moreover, epilepsy is perhaps a more complex and unique condition to study when it comes to race and ethnicity since epilepsy remains highly stigmatised in many areas of the world. Within some Afro-Caribbean, Asian and Latin American communities, epilepsy may be considered as a result of religious and/or spiritual causes; for example, in a 2011 study based in Jamaica, nearly 12% of participants believed that epilepsy was a result of demonic possession⁸.This may mean that patients from these ethnic backgrounds are a) less likely to present to a doctor with their signs and symptoms, and b) less likely to adhere to prescribed treatment regimes. In this case, ‘Equity, Diversity and Inclusion’ means those working in epilepsy care must have a greater knowledge of the differences within the communities they treat and ensure that a sufficient level of understanding is reached in order to make the patient feel comfortable, respected, educated about their condition and subsequently, aware of the importance of their treatment regime. A US paper released in 2018 identified multiple reasons as to why African-American, Hispanic and non-English-speaking patients underwent surgical treatment for epilepsy at rates significantly lower than white patients, and organised them into the acronym ‘FACETS’ - fear of treatment, access to care, communication barriers, education, trust between patient and physician, and social support⁹. Relating to epilepsy care, it is clear that complex relationships exist among social determinants of health and that more focus is required before we can fully understand and eliminate disparities in patient care and outcomes.

 

When it comes to race, we know that pervasive systemic inequalities have historically led to catastrophic outcomes and beliefs that ‘Blacks’ and ‘Whites’ are biologically and physiologically different (an idea stemmed in the justification of slavery) have been shown to persist to this day. A recent study in the US showed that approximately half of a group of white medical students upheld ideas that Black people feel less pain than white people and made less accurate treatment recommendations as a result¹⁰. Research also suggests that empathy plays a crucial role in racial pain treatment disparity¹¹, activation of the anterior cingulate and bilateral insula (sensory and emotional areas of the brain) is greater on observing people of the same race in pain compared to people of a different race¹². These findings are arguably some of the reasons for the differing experiences and disproportionate deaths experienced by Black mothers during childbirth.

 

I have seen first-hand how stereotypes and judgements are so readily applied to some patients, from witnessing colleagues label a child as ‘difficult’ before even meeting them because of their  “naughty name” to assumptions of ‘poorer parenting’ from single-parent families. I know that, for many, this will be a difficult pill to swallow as it goes against the pledges we all make as clinicians or healthcare professionals, but we must accept that our deep-rooted unconscious (or conscious…) biases may be affecting the way we treat our patients. As the above research suggests, it may just be that the blonde-haired and blue-eyed little girl, who reminds the doctor of his or her daughter, evokes a greater personal emotional response, leading them to do everything they can to help them and their family; whereas they feel a lesser connection with a teenage Black boy, leading to him receive only satisfactory care, without the same level of interaction, dedication and prioritisation of their care and treatment. This has a direct effect on their experience, their treatment and their chances of survival - yes, it is literally a matter of life and death sometimes. This is bound to make a lot of readers uncomfortable, but it is an uncomfortable conversation that must be had and one that is way overdue in 2021.

    

So, where do we go from here? The first step is acceptance and accountability; the second is real dedication to change. We must first develop an understanding and awareness of the scale of the problem before we can take the necessary steps towards long-lasting, transformational change. We must:

 

vChallenge our own thoughts and beliefs and question our current behaviours and practices;

vSpeak up in situations where we suspect bias or discrimination, even in response to microaggressions, other problematic behaviours and things we often just ‘let go’;

vListen to our Black and ethnic minority colleagues and patients (without judgement, interruption or dismissal of the reality of their lived experiences);

vCommit to anti-racism at work and in all aspects of our lives. Be open-minded, educate ourselves and continue to raise awareness of these issues.

 

It is also extremely important that we take steps towards enhancing diversity and representation across healthcare - how can we say that we are representative of the population we serve and are truly addressing the needs of ethnic minority patients if there is no diversity and therefore a lack of understanding of relevant issues amongst those who makes the decisions?

 

We need to ensure medical research, clinical trials and healthcare education are more inclusive than they currently are. For example, after noticing that medical textbooks tend to use white heterosexual males as the ‘norm’, a book focusing on recognising clinical signs on Black and brown skin named ‘Mind the Gap’ was developed by London-based medical student Malone Mukwende¹³. The majority of clinical studies also remain largely over-represented by white heterosexual males; a relevant example of the impact of this is the identification of the link between Carbamazepine and severe skin reaction in some patients of Asian descent who carry a particular gene¹⁴. Only this year, Arnelle Etienne, Computer Engineering student at Carnegie Mellon University in Pittsburg, addressed the fact that traditional EEG electrodes are less compatible with Black hair and developed novel methods for more reliable recordings on all hair types¹⁵. The implications of this are huge, not only reducing potentially uncomfortable and emotionally provoking experiences for the patient but generally improving the quality of EEG recordings, both contributing to a more efficient diagnostic process and reducing the implicit racial bias that currently exists in EEG research (as poorer quality data may be rejected from the data set, therefore eliminating this patient group from research). In the above cases, a diverse workforce was essential in recognising the challenges that exist for specific communities, providing new ideas and truly addressing the needs of all patients.

  

Figure 3: Both braiding and newly designed electrodes can improve the electrical signal recorded from Afro-Caribbean hair-types¹³

“Unless all ethnic communities are included in research, the medical profession will never be able to develop culturally competent diagnostic tests and services, and therefore can’t deliver true equity in healthcare.” ¹⁶

 

Although having a diverse workforce is important, it isn’t the sole solution to the issues I have highlighted. I hope that this article has initiated the open and honest conversation we all need to start having when it comes to race. As healthcare professionals, we must uphold the values of the NHS Constitution and ensure that ‘everyone counts’ - making sure nobody is excluded, discriminated against or left behind - staff or patients. In 2021, we must make a real commitment to equity, diversity and inclusion and embed anti-racism in all aspects of our work.

By Danielle Johnson

Clinical Scientist in Neurophysiology

Written for The Association of Neurophysiological Scientists

 

References:

1.      NHS Workforce Race Equality Standards, 2019 Analysis Report for NHS Trusts. Published February 2020. Accessed online: https://www.england.nhs.uk/publication/workforce-race-equality-standard-data-reporting-2019/

2.      Racism is still a huge problem in the UK’s workplaces, finds report (2019) The University of Manchester. Accessed online: https://www.manchester.ac.uk/discover/news/racism-is-still-a-huge-problem

3.      Aldridge, R.W., Lewer, D., Katikireddi, S.V. et al. Black, Asian and Minority Ethnic groups in England are at increased risk of death from COVID-19: indirect standardisation of NHS mortality data [version 1; peer review: 3 approved with reservations]. Wellcome Open Res 2020, 5:88, Accessed online: https://doi.org/10.12688/wellcomeopenres.15922.1

4.      Knight M, Bunch K, Tuffnell D, Jayakody H, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2014-16. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2018.

5.      The Guardian, Black Doctor’s death becomes a symbol of racism in coronavirus care, Published December 2020. Access Online: https://www.theguardian.com/world/2020/dec/26/black-doctors-death-becomes-a-symbol-of-racism-in-coronavirus-care

6.      Epilepsy Society, Facts and Myths. Updated February 2020. Accessed online: https://www.epilepsysociety.org.uk/

7.      Public Health England Report Highlights Increasing Rate of Deaths in People with Epilepsy, Epilepsy Today, Epilepsy Action. March 2018. Accessed online: Public Health England report highlights increasing rate of deaths in people with epilepsy | Epilepsy Action

8.      Ali, A., Ali. T.E., Kerr, K. & Ali, S.B (2011) Epilepsy awareness in a Jamaican community: Driven to change! Epilepsy & Behaviour, 22 (4): 773-777. Accessed online: https://doi.org/10.1016/j.yebeh.2011.09.022

9.      Nathan, C. L. & Gutierrez, C. (2018) FACETS of health disparities in epilepsy surgery and gaps that need to be addressed. Neurology. Clinical practice, 8(4), 340–345. Accessed online: https://doi.org/10.1212/CPJ.0000000000000490

10.   Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between Blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113

11.   Kaseweter, K. A., Drwecki, B. B., & Prkachin, K. M. (2012) Racial differences in pain treatment and empathy in a Canadian sample. Pain research & management, 17(6), 381–384. Accessed online: https://doi.org/10.1155/2012/803474

12.   Cao, Y., Contreras-Huerta, L.S., McFayden, J. & Cunnington, R. (2015) Racial bias in neural response to others’ pain is reduced with other-race contact. Cortex, 70: 68-78. Accessed online:  https://doi.org/10.1016/j.cortex.2015.02.010  

13.   Rimmer, A. (2020) Presenting clinical features on darker skin: five minutes with Malone Mukwende. BMJ. 369: Accessed online: https://doi.org/10.1136/bmj.m2578

14.   Miller, J.W. (2008) Of Race, Ethnicity and Rash: The Genetics of Antiepileptic Drug Induced Skin Reactions. Epilepsy Currents. 8(5) Accessed online: https://doi:10.1111/j.1535-7511.2008.00263.x  

15.   Massive Science, EEG research is racially biased, so undergrad scientists designed new electrodes to fix it (2020) Accessed online: https://massivesci.com/articles/racial-bias-eeg-electrodes-research/

16.   Black People, Racism and Human Rights. House of Commons and the House of Lords: Joint Committee on Human Rights. Eleventh Report of Session 2019-21.