Doctors must challenge ableism in healthcare
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2968 (Published 20 December 2023) Cite this as: BMJ 2023;383:p2968
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Dear Editor,
We were very interested to read the opinion piece by Jackson et al.¹ titled, “Doctors must challenge ableism in healthcare”. This piece highlights the concept of ableism and its influence on healthcare for people with disabilities. Healthcare providers need to receive more education on caring for the growing population of people with disabilities. Disability is a socially constructed phenomenon.¹ Based on the “social model of disability”, the design of the environment can impact how people function and navigate their daily lives. For example, if a person has a muscle weakness disability, they may have more difficulty sitting on a high chair rather than on a chair lower to the ground. As such, it is the collective responsibility of society, including healthcare, to design an environment in which people can equitably access and use resources.
We agree with the authors that ableism is harmful and creates inequitable health outcomes. We therefore introduce the concept of belonging as a powerful tool in decreasing ableism and promoting improved health outcomes of persons with disabilities. Belonging refers to the feeling of being accepted, valued, and included in a community or social group. When our patients, colleagues, and neighbors with disabilities experience belonging, it can enhance well-being and social integration, reduce stigma, increase empowerment and advocacy, and decrease ableism.
As Jackson et al.¹ suggest, it is critical to recruit more people with disabilities to the healthcare provider workforce to optimally care for patients with disabilities. Only 3.1% of practicing United States physicians self-identify as having a disability.² There are multiple barriers facing physicians with disabilities at various points in medical training that may contribute to the underrepresentation of people with disabilities in the physician workforce. Nguyen et al.³ found that the risk of burnout increased for medical students as their number of disabilities increased. Medical students with one and multiple disabilities were at 70% and 254% greater risk of burnout after adjusting for multiple covariates. Barriers facing providers with disabilities may include implicit bias and discrimination.⁴ Escalon and colleagues⁴ propose strategies to support the recruitment of more physicians with disabilities including holistic review, implicit bias training, structured interviews, and targeted outreach.
Moreover, Silver and colleagues⁵ recently explored the topic of enhancement of retention in Rehabilitation Medicine, a field of professionals who almost exclusively work with persons with disabilities and have high workforce shortages. Their publication explores the challenges in the field, including push and pull factors that contribute to significant attrition. To bolster retention for clinicians, especially those with disabilities, it is crucial to prioritize stay factors, inclusive of fostering a sense of belonging. Schaechter and colleagues⁶ conducted a survey examining the association between workplace belonging and the probability of women healthcare professionals departing their institutions. The findings indicated a positive correlation between higher sense of workplace belonging and decreased likelihood of leaving the institution within the next two years. Belonging through designing an appropriate safe environment is essential at all levels and enhances inclusion and retention.
Ableism results in unconscious biases and has a detrimental impact on healthcare outcomes. Intentional efforts to recruit individuals with disabilities within medicine can help with overall inclusion in clinical care through empowerment, advocacy, and additional perspectives. Being intentional about fostering a sense of belonging for all involved in healthcare - physicians, trainees, patients, and caregivers/family members can result in reduced social stigma, a higher sense of well-being, and ultimately in reduced ableism related to unconscious biases. Promoting a sense of belonging in the workplace has also been demonstrated to improve career satisfaction and retention of the healthcare workforce.
Rachel Esparza, MD
Resident Physician
Northwestern University, Shirley Ryan AbilityLab, Chicago, IL
Divya Singhal, M.D., F.A.A.N.
Departments of Neurology and Rehabilitation Medicine, Long School of Medicine at the University of Texas Health Science Center at San Antonio, San Antonio, TX
Service Chief, Spinal Cord Injuries/Disorders Center, VA San Antonio
Monica Verduzco-Gutierrez, MD
Department of Rehabilitation Medicine, Long School of Medicine at the University of Texas Health Science Center at San Antonio, San Antonio, TX; Critical Illness and NeuroRecovery, Warm Springs Hospital, San Antonio, TX, United States
References:
1. Jackson L. Doctors must challenge ableism in healthcare. BMJ. 2023 Dec 20;383:2968. doi: 10.1136/bmj.p2968. PMID: 38123176.
2. Nouri Z, Dill MJ, Conrad SS, Moreland CJ, Meeks LM. Estimated Prevalence of US Physicians With Disabilities. JAMA Netw Open. 2021;4(3):e211254. doi:10.1001/jamanetworkopen.2021.1254
3. Nguyen M, Meeks LM, Pereira-Lima K, et al. Medical Student Burnout by Race, Ethnicity, and Multiple Disability Status. JAMA Netw Open. 2024;7(1):e2351046. doi:10.1001/jamanetworkopen.2023.51046
4. Escalon MX, De Mesa C, Valdez G, Silver JK, Kirksey KM, Verduzco-Gutierrez M. Beyond a Hashtag: Strategies to Move Toward a More Inclusive Physiatry Workforce. Am J Phys Med Rehabil. 2021 Jul 1;100(7):712-717. doi: 10.1097/PHM.0000000000001623. PMID: 33065579.
5. Silver JK, Fleming TK, Ellinas EH, Silver EM, Verduzco-Gutierrez M, Bryan KM, Flores LE, Sarno DL. Individual, Organizational, and Policy Strategies to Enhance the Retention and a Sense of Belonging for Health Care Professionals in Rehabilitation Medicine. PM&R (accepted in press) DOI:10.1002/pmrj.13152
6. Schaechter JD, Goldstein R, Zafonte RD, Silver JK. Workplace Belonging of Women Healthcare Professionals Relates to Likelihood of Leaving. J Healthc Leadersh. 2023;15:273-284. Published 2023 Oct 26. doi:10.2147/JHL.S431157
Competing interests: Rachel Esparza, MD – no disclosures related to this work. Divya Singhal, MD - no disclosures related to this work. Monica Verduzco-Gutierrez, MD - has received honoraria to speak on topics related to DEI and health equity.
This opinion by Lottie Jackson describes many important issues involved with disability in healthcare. However, it does not mention one of the significant additional reasons why this issue must be taken extremely seriously by the Medical profession and indeed all other clinical professionals
Over and above her appeal for a better understanding of disability we as medical professionals (as do other registered) clinicians have duties under
1. United Nations Convention on the Rights of Persons with Disabilities
2. The Equality Act 2010
and expectations under the new GMC Good Medical Practice (and similar HCPC and GNC guidance ). It is disappointing that she should feel the need to write such an opinion as the issues she raises ( ensuring that disabled people get equity in healthcare) should be something we are championing
The recently introduced Oliver McGowan mandatory training at level II, which would be the expectation of all clinically practicing doctors, requires training in the Equality Act 2010, therefore clinicians are expected to understand the duties.
Dr Andy Tyerman, a respected clinical psychologist, recently published in The Psychologist (British Psychological Society’s journal) an article outlining the duties that clinicians have to both patients and colleagues with the link to his website https://equitynotjustequality.co.uk/ ) where you can assess your understanding and update it at no cost. I believe it would be appropriate to put this in your revalidation folder.
It appears from comments and actions within the NHS that I have experienced that the understanding of these duties is very patchy.
I would strongly advise all medical practitioners to make this area in which they need to be fully up to date as the consequences of even inadvertent discrimination can be significant.
Competing interests: I have ADHD therefore disabled and Andy Tyerman is my brother
Dear Editor,
All members of the healthcare team in all locations must challenge ableism in healthcare. This includes pharmacists who may encounter people with neurodiversity every day.
The role of the pharmacist supporting the person with neurodiversity and her network includes
• Making ‘reasonable adjustments’ to ensure equitable access to pharmacy support/advice
• Ensuring medicines used appropriately
• Helping to advocate for the person with neurodiversity
• Being aware of ‘diagnostic overshadowing’ and ‘healthcare by proxy’.
People with neurodiversity who are autistic and have epilepsy face some of the starkest inequalities in the world. On average, they have poorer quality of life, poor health and can die early (1). Co-occurring epilepsy contributes to decreased quality of life and increased risk of mortality among autistic patients (2, 3). Potential difficulties with epilepsy medication including side effects and adherence have been identified (1)
‘Difficult to know what it is what in terms of side-effects of medication or behaviour’
‘Difficulty taking anti-seizure medication’.
Significant autism knowledge deficits have been revealed in healthcare professionals. Pharmacists and other healthcare professionals need a robust knowledge of autism and the challenges faced by autistic individuals and their carers to provide effective support (4). Pharmacists should optimise individual pharmacy consultations and ensure the healthcare environment is appropriate for autistic people (taking their individual sensory and communication needs into account).
People with neurodiversity need equitable healthcare services not equal services. People with neurodiversity should achieve equal outcomes with the population who do not experience neurodiversity. The entire healthcare team including pharmacists have a role to play. Pharmacy teams can play a crucial role in supporting autistic individuals and their families in managing their medicines (4). Research is needed to examine seizure medication side-effects in people with autism (1).
(1) https://www.youngepilepsy.org.uk/sites/default/files/dmdocuments/2021-10...
(2) Capal, J. K., Macklin, E. A., Lu, F., & Barnes, G. (2020). Factors associated with seizure onset in
children with autism spectrum disorder. Pediatrics, 145(Supplement 1), S117-S125.
(3) Woolfenden, S. U. E., Sarkozy, V., Ridley, G., Coory, M., & Williams, K. (2012). A systematic review of two outcomes in autism spectrum disorder–epilepsy and mortality. Developmental Medicine & Child Neurology, 54(4), 306-312
(4) Adams, Danielle & Tharian, Reena, March 2023 Pharmaceutical Journal. Autism: identification, management and support
Competing interests: No competing interests
Dear Editor,
"Addressing Discrimination Against Mental Illness in Healthcare: A Call to Action"
I am writing in response to the article titled "Doctors must challenge ableism in healthcare," published in The BMJ on December 20, 2023. The article rightly underscores the pressing concern of ableism within healthcare systems, emphasizing the pervasive discrimination faced by individuals with mental illness when seeking medical care.
Research, such as Thornicroft et al. (2009) and Link and Phelan (2006), highlights the alarming disparities and discrimination faced by individuals with mental illness within healthcare systems. Discriminatory attitudes and behaviors among healthcare professionals affect access to essential care and health outcomes, resulting in delayed diagnoses, inadequate treatment, and detrimental health consequences for this vulnerable population.
The barriers faced by individuals with mental illness extend beyond discrimination. Pescosolido et al. (2010) identify structural obstacles within healthcare systems, including limited insurance coverage for mental health services, inadequate access to specialists, and the separation of mental and physical healthcare. Despite mental health parity laws, disparities persist, with insurance companies imposing higher costs and stricter limits on mental health benefits. This unequal treatment, as reported by The National Alliance on Mental Illness (NAMI), exacerbates discrimination against those with mental illness, denying them the same level of care and financial support available to individuals with physical health conditions.
Given the compelling evidence of discrimination against people with mental illness in healthcare settings, it is imperative that we take decisive actions to rectify this issue. I propose the following recommendations:
(a) Mandatory Training: Healthcare professionals should undergo mandatory training in mental health awareness, destigmatization, and cultural competence. This training would equip them with the skills and knowledge needed to reduce discrimination and improve the quality of care for individuals with mental illness.
(b) Policy and Regulatory Reforms: Governments and healthcare institutions should enact and enforce policies that ensure equitable access to mental health services. These policies should include strict enforcement of mental health parity laws and mechanisms for holding healthcare providers accountable for discriminatory practices.
(c) Integration of Mental Health Services: To reduce stigma and enhance access to comprehensive healthcare for individuals with mental illness, healthcare systems should prioritize the integration of mental health services into primary care settings. This approach would ensure that mental health is treated with the same importance as physical health.
(d) Public Awareness Campaigns: Public health campaigns should be launched to raise awareness about the discrimination faced by individuals with mental illness. These campaigns should target not only healthcare professionals but also the broader society to reduce stereotypes and foster empathy toward those with mental health conditions.
In conclusion, addressing discrimination against people with mental illness in healthcare is crucial. Evidence points to the need for policy, attitude, and practice reforms for equitable care. Implementing the recommended steps can lead to an inclusive healthcare system. I commend The BMJ for addressing this issue and look forward to further progress in healthcare systems.
Om Prakash M.D.
References:
1. Thornicroft, G., Rose, D., Kassam, A., & Sartorius, N. (2007). Stigma: ignorance, prejudice or discrimination? The British Journal of Psychiatry, 190(3), 192-193. doi:10.1192/bjp.bp.106.025791
2. Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509), 528-529. doi:10.1016/S0140-6736(06)68184-1
3. Pescosolido, B. A., Martin, J. K., Long, J. S., Medina, T. R., Phelan, J. C., & Link, B. G. (2010). "A disease like any other"? A decade of change in public reactions to schizophrenia, depression, and alcohol dependence. The American Journal of Psychiatry, 167(11), 1321-1330. doi:10.1176/appi.ajp.2010.09121743
4. The National Alliance on Mental Illness (NAMI). (n.d.). Mental Health Parity. Retrieved from https://www.nami.org/Your-Journey/Individuals-with-Mental-Illness-and-Fa...
Competing interests: No competing interests
What are you going to do to challenge ableism?
Dear Editor
Lottie Johnson makes great points about how meeting the challenges of disability is the collective responsibility of society.
Ensuring physical accessibility to health services would be a great start. Begging strangers for help with the auto-close doors on the so-called accessible toilets in a hospital (1) is a humiliating example of the invisible work (2) that disabled people have to do.
With over 20% of people in the UK currently disabled, surely the BMJ needs to do more than print an opinion piece on ableism. Especially with the NHS under so much pressure at the moment, it’s just not enough to suggest ‘taking time to empathise’ (3).
Clinicians are there for many of the events and procedures which imply or lead to disability. But simply establishing a diagnosis or even an effective treatment plan is often nowhere near enough.(4)
So let's try to get more specific:
People are not either disabled or ‘normal’.(5)
Disabled people are often impressively resilient and smart. We manage multiple conditions 24/7 - while ‘our’ specialist may be thinking about one of our conditions for 30 minutes a year.
There’s huge diversity within the disabled community. Intersectionality - other forms of inequality or disadvantage - multiplies the challenges.(6)
Please don’t assume our disability(ies) are static. We might be working hard to get functional improvement - or/and have degenerative condition(s).(7)
Many disabled people are poor - or even destitute.(8) Before you make any ‘treatment’ suggestions, please bear eating and heating in mind.
More disabled people live in families than are solo.(9)
Fundamentally, please don’t forget that - just like you - disabled people are people too. If you’re going to help fulfil an individual’s hopes or dreams, you need to ask and listen.
So what one thing are you and your service going to do differently now? Disabled-friendly services are good for everyone!
1 A London hospital has lots of heavy doors that I can't physically open. Pushing them slightly open and shouting ‘Help Help’ is not a good look! Many of the ‘disabled toilets’ have doors that close automatically before you can get in. Then you struggle to get out. Asking a stranger to wait outside while you go to the toilet surely shouldn’t be necessary. I’m guessing it's not only one hospital that has a problem with physical inaccessibility!
2. Social model starters: Jan Grue. Theatre Deli blog
4. Esther Lau. Winner of the 2024 Wakeley - Wu Lien Ten Prize 2024:403 / 10425:p419
5. Social model starters: Jodie Louise Russell. Theatre Deli blog
6. Social model starters: Ashok Mistry. Theatre Deli blog
7. Caroline Mawer. Wake Wash Work. 24 September 2023
8. The risk of deep poverty is 60% higher in UK families where someone is disabled than those where nobody is. JRF. From disability to destitution. 26 July 2022. https://www.jrf.org.uk/deep-poverty-and-destitution/from-disability-to-d...
9. Social model starters: Fionnathan. Theatre Deli blog
Competing interests: No competing interests