Osei-Mensah said that following the end of the pilot, she had actively avoided A&E due to “unbearable” previous experiences.
“Just being in A&E can make the crisis worse,” she said.
The 21-year-old added that she had previously waited up to 28 hours in an emergency department for medical care and had to repeatedly advocate for herself while in “excruciating pain”.
Guidelines from the National Institute for Health and Care Excellence (NICE) advise that a sickle cell crisis should be treated as “an acute medical emergency” and patients should receive pain relief within 30 minutes of presenting at hospital.
Osei-Mensah said she had waited longer than 30 minutes just to be triaged at A&E.
She said the emergency unit pilot meant she received pain relief much faster, but said there had been problems in how the scheme was communicated to patients.
“I know for a fact that there’s a lot of sickle cell patients that didn’t know about the unit,” Osei-Mensah said.
She said she was told about the unit through a group chat, not from the hospital directly, and only discovered that it was a trial when it was mentioned by a nurse during one of her visits.
“If there had been more [patients], they might have thought to have kept it,” she added.
Barts Trust did not respond to questions about how and when patients were informed about the pilot scheme.