“Playing Russian roulette with my life”: What really happens to sickle cell patients in hospital

Lowlah was kicked out of a London hospital in the middle of the night after asking for pain relief. Her story reveals a pattern of "racism and stigmatisation".

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Dec 06, 2025

It was the middle of the night, two days before Christmas, 2024. Outside, the temperature was below freezing. After enduring hours of agony, Lowlah Dawodu had finally been given a bed in a central London hospital. But when she questioned staff about the timings of her next round of painkillers, they called security.

“It was inhumane. The way they treated me,” says Lowlah. “My friend who was there to advocate for me was crying. She couldn’t understand why they were doing this.”

Lowlah has sickle cell. In December 2024, the 36-year-old from London was in the grip of a chest and leg crisis that left her immobile, forcing her to call an ambulance to take her to the hospital where she received regular treatment for her lifelong, incurable condition. University College London Hospitals [UCLH] has a dedicated sickle cell unit that aims to provide “world-class care”, “cutting-edge treatment”, and processes that minimise time spent in hospital. But none of that matters if patients in crisis can’t access this care.

“They kicked me out,” says Lowlah. “It was very scary. Nothing had happened to warrant them calling four male security guards to my room. It was just me and two female friends. There had been no commotion. No abuse. Nothing.

Lowlah has now been barred from accessing all UCLH services. Pic: *Lowlah Dawodu*

“My friend had asked to see a nurse because I was deteriorating. I couldn’t advocate for myself. I couldn’t walk.”

The hospital’s policy said only one visitor was allowed at the time, but Lowlah needed both friends to help her wash, change and use the toilet, as she says staff had not done this. But when Lowlah’s friend explained why she needed to stay, and asked staff about the next dose of medication, security guards were called to the room.

At this point, all three women were frightened. Lowlah’s friends were unwilling to leave her alone as the atmosphere turned hostile.

“It had been hours and no one had been in to clean me up,” she explains. “I was developing sores on my face – I had never seen that before. I was deteriorating very quickly.”

Sickle cell disease is a genetic blood disorder that primarily affects Black people. The illness affects the shape of red blood cells, which carry oxygen to all parts of the body. Sickle cell is known to be one of the most painful conditions. People with the illness use phrases like “bone-crushing”, “burning internally”, and “stabbing all over” to describe the pain of a crisis, which can last days or weeks and recur regularly.

“My experiences with the NHS have created such a deep lack of trust that it doesn’t always feel worth the risk to even try to get help.”

Lowlah’s ordeal began when she first called the ambulance. She was told that as she wasn’t having a heart attack or a stroke she would have to make her own way to hospital. Eventually, after Lowlah’s friend explained she was at risk of cardiac arrest if she wasn’t treated, an ambulance was sent. Lowlah doesn’t remember getting to A&E, but she knows she couldn’t have done it without the support of her friends.

Hours later, about to be turfed out at 4am in the middle of winter – sickle cell symptoms are exacerbated by cold weather – Lowlah and her friends were desperate.

“The security guard was telling me he was so sorry, but they had to do it. I asked why they had been called to our room and he said he had been told to ‘go and get the Nigerian girl’.”

Lowlah’s friends begged to be permitted to stay so they could take care of her, but the nurse in charge of the ward insisted they must leave immediately. They ended up getting a taxi to the Whittington Hospital in north London. Two days later, still in a pain crisis and unable to walk, Lowlah discharged herself because she was too scared to be in hospital over Christmas when she knew staff would be stretched and distracted.

“Every time I step in a hospital I am anxious,” Lowlah tells The Lead. “It feels like I am playing Russian roulette with my life. My experiences with the NHS have created such a deep lack of trust that it doesn’t always feel worth the risk to even try to get help.”

Lowlah has now been barred from further treatment at UCLH as a result of this incident, which is incredibly disruptive as she now has to travel further to receive care, and has already experienced significant delays for urgent treatment and check ups.

A UCLH spokesperson said: “Ms Dawodu has been declined further treatment at UCLH due to behaviours which were not in line with our values.

“We made several attempts to resolve the situation, but her behaviour was impacting our staff and regretfully we had to take this action.”

The Lead has seen videos showing the arrival of four male security guards to Lowlah’s hospital room. Nothing in the footage we have seen shows aggression or violent behaviour from Lowlah or her friends. UCLH have not elaborated on the specific “behaviours” they deem not in line with their values.

Safeguards aren’t working

What happened to Lowlah is indicative of a dangerous pattern.

John James OBE, CEO of the Sickle Cell Society, tells The Lead he was “deeply concerned” to hear about Lowlah’s story.

“No one experiencing severe pain and medical distress should ever feel unsafe or unsupported in a hospital setting,” he adds. “It is absolutely vital that patients and healthcare staff treat one another with respect, we are clear about that – but it does need to work both ways.”

While he was unable to comment on the particulars of Lowlah’s case, he says it is concerning “in light of the documented mistreatment of sickle cell patients during medical crises.”

“As a result,” he adds, “we have many reports of people opting to stay at home rather than call an ambulance, when they are in a dire and dangerous medical situation.”

Sickle cell disease is incredibly painful, but the pain is also causing damage. The longer a patient is left without oxygen, painkillers and other treatment, the more severe the internal complications can be. A sickle cell crisis is life-threatening. Delays can result in death.

There are safeguards in place that are meant to ensure sickle cell patients are seen quickly – even if they are in too much pain to clearly communicate their needs or medical history.

A physical card you can carry in your wallet is now available to all sickle cell patients in England. Introduced in 2023, the idea is that when presented in A&E, the card allows healthcare staff to quickly access a patient’s individualised crisis care plan. The introduction of 24/7 Hyper Acute Units in London and Manchester hospitals in the same year (UCLH is not one of them), is meant to provide specialist care and allow patients with sickle cell to bypass A&E entirely.

It all sounds positive on paper, but in practice, sickle cell patients have told The Lead, these processes are just not working as they should.

“A lot of NHS money was spent on creating these cards, but showing the card has no impact. In my experience, it doesn’t change how you’re treated or speed anything up,” says Lowlah. “What is the difference between showing staff a card that says ‘I have sickle cell’, and reading it on my file when I come in?

“The issue isn’t them not knowing what condition I have, the issue is them not caring, or not understanding how to treat me.”

Calvin Campbell, an NHS community engagement officer who has sickle cell himself, says there is a pervasive problem of medical staff not taking sickle cell seriously enough.

“You can have a special department, you can have a card, you can have a big sign around your neck – if they don’t care when they see the words ‘sickle cell’, then they don’t care,” Calvin tells The Lead.

“Most of the sickle cell patients in the UK are in London. All of us have a care plan. Staff are supposed to click a button and then they know who we are, they know we need to be treated quickly, they know we need to be in a bed with fluids and pain relief within 30 minutes. But it doesn’t happen like that. The systems are not joined up.”

The 30-minute rule Calvin is referring to – that sickle cell patients in crisis should receive pain and clinical assessments, and analgesia within 30 minutes of presenting at hospital – is a NICE [National Institute for Health and Care Excellence] quality standard, which is not mandatory but represents best-practice expectations. According to Calvin, no hospital in the UK is currently meeting this target. While there is no comprehensive national data to confirm this, analysis from the Health Service Journal and NHS Race & Health Observatory shows delays are widespread and systemic.

At Cambridge University Hospital, only 17 per cent of admissions received pain relief within 30 minutes in 2022. At the Whittington Hospital – where Lowlah was sent after being ejected from UCLH – less than half (41 per cent) of sickle cell crisis patients had pain relief within 30 minutes, and the average delay was 47 minutes. In the scheme of A&E waiting times, this might not seem too dire – but speed is critical. The guidance is there to protect sickle cell patients from the dangers of slow treatment.

“With sickle cell, it’s not just about pain management, it’s about urgency,” says Lowlah. “The illness goes from zero to 100 real quick. If you come in and your pain is ignored, you deteriorate fast. It gets to the point where you can’t even speak.”

Calvin, who has spent a significant portion of his life in hospital managing his condition, has experienced long delays, careless or belittling attitudes from staff, and even outright hostility, at various London hospitals including UCLH.

“I was called a ‘f***ing junkie’ by a doctor. I heard them discussing me with another member of staff. They didn’t want to give me pain relief, they didn’t believe I was in a sickle cell crisis,” says Calvin. “The irony is that if I were actually a drug addict, I might be treated better.”

Racism and stigmatisation

This August, an inquest concluded that neglect by North Middlesex Hospital NHS Trust contributed to the death of a six-year-old girl with sickle cell.

Shen’iyah Green died less than three hours after being sent home from hospital, after medics failed to recognise complications of sickle cell and told her mother she was “absolutely fine”. According to the inquest findings, medics did not consider the complexities of her sickle cell disease despite this being clear in her records, and despite the fact she was carrying a sickle cell card at the time of admission.

Campaigners say there is a chronic lack of sickle cell training for medics. Inadequate education on symptoms, presentation, and possible complications, results in antagonistic encounters at best, and at worst, loss of life. Alongside all of that is the cultivation of a profound lack of trust, which leads many in the sickle cell community to feel as though seeking treatment in hospital is a last resort. Some avoid doctors altogether, risking their lives in the process.

In June, a comparative review published by the NHS Race and Health Observatory in partnership with the Sickle Cell Society, identified a “long-standing pattern of underinvestment and de-prioritisation that has eroded trust among many people with sickle cell in the healthcare system.”

“Too often,” the report continues, “[patients] encounter poor knowledge of their condition or substandard treatment from the very services designed to support them.” Patients also reported “low awareness” of sickle cell in A&E, and GPs that are “unreliable” during a crisis.

The report also concludes that sub-standard care and “frequent negative attitudes towards patients” is “often driven by racism and stigmatisation”.

John James from the Sickle Cell Society, says the report highlighted “ongoing concerns about racism, bias, negative stereotyping, and the mislabelling of sickle cell patients as ‘aggressive’ and ‘drug seeking’.”

He tells The Lead these experiences “undermine trust” and contribute to “unacceptable disparities in care”, which, in some cases, have led to patient death.

“This is precisely why the NHS Sickle Cell Improvement Programme – including work on emergency pathways and initiatives such as the Emergency Department Bypass pilots – is so important,” he adds. “Systemic change is needed to address these issues.”

Much is made of innovative treatment advancements in sickle cell. A revolutionary gene-editing therapy was announced back in January and touted as a “functional cure” for the disease. However, an eye-watering price tag of £1.65m means only around 50 people a year with the inherited blood disorder are likely to receive it.

For Calvin, the focus is in the wrong area. While new treatments and drugs can provide a sense of progress, this can simply mask the chronic lack of progress in the actual care of sickle cell patients. The emphasis, in his view, should be on improving the care pathway and how patients are treated when they need help, not solely on medical advancements that are still inaccessible for most.

“Doctors, nurses, everyone interacting with sickle cell patients should have mandatory training,” says Calvin. “Saying you don’t know about a condition, when in London hospitals you are likely to encounter people with that condition every single day, isn’t good enough.

“If an A&E doctor didn’t know how to treat a person with a broken leg, that would be a problem. If a cancer patient came in and the doctor mistreated them, that would be unacceptable. Why is it acceptable for us?”■

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