Healthcare for sickle cell disease: Experiences of racism
Sickle cell disease is a condition that affects millions of people globally. It is particularly common among individuals of African or Caribbean heritage, yet these are the very people who may not always receive the care they need. Part of the reason behind this lack of access to care lies in systemic racism. This Special Feature delves into this issue.
Sickle cell disease, which also refers to sickle cell anemia, is a blood disorder inherited genetically. People with the condition have atypical hemoglobin, a protein in red blood cells that carries oxygen. Individuals with sickle cell anemia inherit an atypical sickle hemoglobin gene from each biological parent.
While blood cells are usually disk-shaped, a person with sickle cell will have red blood cells that feature a “sickle” or crescent shape. These blood cells do not bend as easily and can block blood flow to different parts of the body.
People with sickle cell disease may experience something known as sickle cell crisis, which can result in severe and debilitating pain. For many of these individuals, the first port of call will normally be an urgent care center or emergency department.
However, recent media attention has shone a light on the inadequate healthcare some individuals with sickle cell disease — particularly Black people — receive when trying to access treatment.
In 2019, Evan Nathan Smith, a 21-year-old Black man, died while admitted at North Middlesex Hospital in London in the United Kingdom. While in the early stages of a sickle cell crisis, Smith was denied oxygen, which he requested. He died the following day after experiencing a series of cardiac arrests. While hospitalized, Smith rang 999 from his bed as he believed it was the only way to get help.
Following Smith’s death, the Sickle Cell Society and the All-Party Parliamentary Group for Sickle Cell and Thalassemia (SCTAPPG) released a report in 2021 that detailed serious failings in the healthcare system in providing treatment for people with sickle cell. This included substandard care in emergency care centers and inadequate knowledge about sickle cell among healthcare staff.
Medical News Today spoke with Black individuals with sickle cell disease to hear about their experiences when accessing healthcare in the U.K. We also spoke with a Black junior doctor working in medical education and with regulatory and governing bodies within the healthcare system to see what is being done to improve sickle cell care.
Disclaimer: We have changed our interviewees’ names to protect their identities.
The knowledge gap
Many people who MNT spoke with pointed to a lack of understanding about sickle cell disease from healthcare staff, an issue that was highlighted by the report published by the Sickle Cell Society and the SCTAPPG.
Alidor, 33, a sickle cell advocate and musician, uses his music to raise awareness about the condition. He emphasized that expertise on the disease can vary depending on where you are in the country.
For example, a few years ago, while in Manchester and experiencing a sickle cell crisis, he realized that staff did not seem to be knowledgeable about the condition. “I checked myself out and traveled to London while still experiencing severe pain because I knew that at least in London, the doctors would know what they were dealing with,” he told MNT.
He mentioned another incident in West Sussex a few years ago, where an ambulance had to be called as he was experiencing a crisis. “The EMT [emergency medical technician] didn’t even know what sickle cell was,” he said.
Dr. Evangeline is a junior doctor currently working in medical education and helping train medical students at a London university. She believes that the lack of medical education on sickle cell disease has also led to healthcare staff not treating a sickle cell crisis as a medical emergency:
“Someone has a heart attack or a stroke, and everyone on a ward mobilizes immediately, but that same response is not given to someone with sickle cell. That in it of itself is racism because they have decided that this is not important to learn about.”
The 2021 report recommended that the General Medical Council (GMC) and the Nursing and Midwifery Council — regulators for doctors, nurses, and midwives, respectively — “strengthen” requirements on the level of sickle cell training required for university curricula to be approved.
When MNT approached the GMC regarding this, the organization noted that it did not have the power to approve specific content of medical schools’ curricula. However, it also noted that a new Medical Licensing Assessment would be introduced to final year students from 2024 and that sickle cell disease would be included on the list of conditions that could be assessed.
“We regularly review our guidance and educational outcomes to ensure they keep up to date with new information and developments in healthcare,” said a GMC spokesperson.
The lack of medical education not only affects the expertise level of healthcare staff but also the timely delivery of care. The National Institute for Health and Care Excellence (NICE) produces evidence-based guidance and quality standards for healthcare staff.
According to its guidelines governing treatment for an acute painful episode of sickle cell disease — a crisis — not only should the episode be treated as an acute medical emergency, but the person should also be offered pain relief within 30 minutes of presenting at the hospital.
However, this was not the case for many people who spoke with MNT.
Maria, 19, who experienced a sickle cell crisis earlier this year, was left waiting for pain relief for 5 hours at a London hospital, only to be given codeine and naproxen. She said the medication was insufficient to help treat the pain.
“I’ve lived in three countries intermittently […] the U.K. is where I noticed and experienced that sickle cell is not seen as a top priority disease […], especially in emergency rooms,” she told us.
Negative attitudes from staff
A significant issue that many of the people MNT spoke to highlighted was the negative attitudes they faced from healthcare staff. They believe that these attitudes they experienced stemmed from a mix of racism and a lack of belief regarding the level of pain they are experiencing.
Siobhan, 22, has had to be admitted to the hospital at least once a year since the age of 16 for sickle cell disease treatment. “My healthcare experience has been nothing short of traumatic,” she told us.
In June 2020, Siobhan was admitted into a hospital in London due to a sickle cell crisis. She was given a pain relief drug that had caused negative experiences in the past. However, the nurse she was assigned was adamant that it was the only drug that was appropriate.
After an hour, the nurse returned with another sickle cell patient. “The nurse had spoken to [the patient] about my situation in an attempt to use that patient to encourage me to stick with the medication,” Siobhan recounted.
She also said that a relative of the patient she was sharing a room with intervened and argued with the nurse due to the breach in patient confidentiality. It was only after this that Siobhan was assigned a new nurse:
“In some situations, even being persistent isn’t enough […] a lot of the staff members don’t typically believe the amount of pain we can be in and believe we’re just fishing for strong painkillers.”
Other people who MNT spoke to also detailed being accused of drug misuse or “fishing” for drugs. “We’re called ‘addicts,’ and we’re constantly having to fight to be believed,” said Alidor.
Moreover, when experiencing a crisis at a hospital a few years ago, Alidor was told by a nurse that, “as there’s no outward bleeding, it can’t be that serious.”
Claire recently took to social media to detail the negative experience that her sister, who has sickle cell disease, endured at a Surrey hospital. Her sister, while experiencing a crisis and in severe pain, was accused by the doctor of trying to obtain narcotics. After being given the wrong medication, her sister was transferred to the Surrey hospital.
Since the incident, Claire has complained to the hospital in question, which is reportedly investigating the incident. Claire, who normally resides with her sister in Scotland, said that the standard of care in England for sickle cell is poor compared with Scotland.
“Our guidance is very clear that doctors must not unfairly discriminate against patients by allowing their personal views to affect their professional relationships or the treatment they provide,” said a GMC spokesperson. “Serious or persistent failure to follow the guidance, which poses a risk to patient safety or public trust in the profession, will put a doctor’s registration at risk.”
Yet the experiences that people shared with MNT have also been illustrated in research. For example, a 2016 study found that racial bias in pain perception by doctors resulted in racial bias in pain treatment recommendations. False beliefs included the idea that Black people felt less pain compared with white people.
A 2021 secondary analysis of a randomized control trial found that Black patients were less likely to receive an opioid prescription compared with white patients.
Increasing awareness of sickle cell
Alidor, who will be delivering a topical seminar for doctors in April, believes that it is time for people within the healthcare system to start advocating for sickle cell patients. “The only people who are making an effort are those with sickle cell,” he said.
Many individuals who spoke with MNT also said that doctors need to ensure they have the relevant knowledge to also inform their patients. “I had to find out a lot of things for myself,” said Rahim, 23, including the fact that people with sickle cell have lower life expectancies and experience developmental delays.
“Even the general public isn’t quite well informed about it, and it would help in a lot of cases where you don’t have to continuously explain what is happening to you or what is best for you,” he added.
Outlook
The National Health Service (NHS) recently announced that crizanlizumab, the first new treatment for sickle cell disease in over 20 years, would be made available to 5,000 people over the next 3 years. The drug is expected to reduce chronic pain and the number of visits to emergency departments. However, Dr. Evangeline believes this is not enough.
“A new treatment is great news for patients, but it does not address the systemic racism, unconscious bias, and lack of knowledge these patients experience,” she told us. Specifically, she said that a more cohesive treatment pathway is needed for sickle cell patients.
When contacted for comment, the NHS said it was developing a consistent whole pathway for people regarding their urgent and emergency care pathways with sickle cell crises to try to optimize experiences and outcomes.
“While specialist services are central to these improvements, it’s also important that each part of the NHS works with patients to improve ongoing care, and we are actively working to make sure all NHS staff better understand sickle cell disease and the challenges these patients face through additional training,” said an NHS spokesperson.
The Care Quality Commission (CQC) is the independent regulator of health and social care services in England. Following the death of Evan Nathan Smith, the CQC published a report citing the need for significant improvement at North Middlesex Hospital.
When approached for comment regarding experiences at other London hospitals as noted in this article, Ted Baker, Chief Inspector of Hospitals, said:
“While we have not found similar concerns to be widespread, we are aware of other incidences where sickle cell patients have experienced substandard care in hospital, and elsewhere in the healthcare system, in part due to limited knowledge of the disease among staff.”
“It is unacceptable for patients to feel like they are not being listened to or taken seriously or for patients or staff to face stereotyping or discriminatory behavior. Understanding the experience of patients is a vital part of our assessment and monitoring of hospital trusts, and where we find concerns, we will follow them up — requiring improvements to be made where needed,” he added.
Meanwhile, the Department of Health and Social Care also noted the need for a cohesive action plan that involved various levels of the healthcare system.
“We are determined to address the long-standing health disparities that exist in many areas and communities and are working to bring together the relevant organizations to consider the report’s recommendations and develop a cross-system action plan,” said a Department of Health and Social Care spokesperson.
“Universities look up to organizations like the GMC,” said Dr. Evangeline when asked about the GMC’s statement.
“They have a responsibility to their patients to make a change. Shifting the blame to medical schools’ curricula is not good enough. They, as a regulator, need to set an example.”
– Dr. Evangeline
“The [No One’s Listening] report was clear — we are failing sickle cell patients. Racism permeates all parts of our society, including the research, the delivery of healthcare, and even the regulatory bodies,” Dr. Evangeline noted. “It all trickles down to every level of care that [Black] patients receive. People don’t understand how daunting that is for a Black person and can be difficult to relate to.”
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