The complete of a pilot program offering specialized emergency care for sickle cell patients at the Royal London Hospital has sparked concerns about potentially “fatal” consequences, according to a Member of Parliament. The Same Day Emergency Care (SDEC) unit, which operated between September 2025 and January 2026, provided an alternative to often lengthy waits in traditional A&E departments for individuals experiencing sickle cell crises. Now, with the pilot concluded, patients are once again reliant on standard emergency services, raising fears about access to timely and appropriate care.
Sickle cell disease, a genetic blood disorder, disproportionately affects people of Black African and Caribbean descent. London has the highest number of people living with sickle cell in the UK, according to the Haemoglobinopathy Registry. Managing the condition requires lifelong care, and acute episodes – known as sickle cell crises – can be intensely painful and require rapid medical intervention. The closure of the dedicated SDEC unit has prompted calls for a national strategy to ensure consistent, specialized care for those living with this debilitating illness.
Abi Osei-Mensah, a sickle cell campaigner, shared her personal experience with the pilot program, highlighting the significant difference it made in her access to pain relief. “Just being in A&E can make the crisis worse,” she stated, recalling previous experiences where she waited up to 28 hours for medical attention and felt compelled to repeatedly advocate for herself while in “excruciating pain.” She emphasized that the SDEC unit allowed for much faster pain management. According to guidelines from the National Institute for Health and Care Excellence (NICE), a sickle cell crisis should be treated as “an acute medical emergency,” with patients receiving pain relief within 30 minutes of arrival at a hospital. NICE provides national guidance and advice to improve health and social care.
However, Osei-Mensah also pointed to issues with communication surrounding the pilot program. She learned about the unit through a group chat, not directly from the hospital, and only discovered it was a trial during a visit. “If there had been more [patients], they might have thought to have kept it,” she added, suggesting that wider awareness and increased patient numbers could have bolstered the case for continuation. Barts Health NHS Trust, which runs the Royal London Hospital, has acknowledged “the strength of feeling and support” for the pilot scheme and stated that patients would “continue to receive specialist-led care” at the hospital’s Haematology Day Unit. The BBC reported on the concerns surrounding the pilot’s end.
The Challenges of Emergency Care for Sickle Cell Patients
The concerns raised by Osei-Mensah and others underscore the unique challenges faced by sickle cell patients seeking emergency care. Standard A&E departments are often ill-equipped to handle the specific needs of individuals in crisis, leading to delays in pain management and potentially worsening outcomes. The SDEC unit offered a more responsive and specialized environment, providing a crucial alternative for those requiring urgent attention. The experience of Osei-Mensah, who actively avoided A&E due to previous “unbearable” experiences, is not isolated. AOL News also reported on patients avoiding A&E due to negative experiences.
Labour MP Bell Ribeiro-Addy has warned that ending the emergency care pilot “could ultimately be fatal” and has urged the government to develop a national strategy for specialized sickle cell care. This call for a comprehensive national approach reflects a growing recognition of the need for standardized, accessible, and high-quality care for individuals living with sickle cell disease across the United Kingdom.
What’s Next for Sickle Cell Care?
The future of emergency sickle cell care remains uncertain. While Barts Trust maintains that specialist care will continue to be available through the Haematology Day Unit, the absence of a dedicated emergency unit raises concerns about capacity and accessibility, particularly during peak times. The trust stated it trialled the emergency care scheme in order to “evaluate its impact and plan more robustly for future services.” Further evaluation of the pilot program’s impact and broader discussions about long-term funding and infrastructure are crucial to ensuring that patients receive the timely and effective care they deserve. The experiences shared by patients like Abi Osei-Mensah serve as a powerful reminder of the urgent need for improved services and a commitment to addressing the disparities in healthcare access faced by those living with sickle cell disease.
This is a developing story, and we will continue to follow updates on the future of sickle cell care in the UK. Share your thoughts and experiences in the comments below.
Disclaimer: This article provides informational content and should not be considered medical advice. Please consult with a qualified healthcare professional for any health concerns or before making any decisions related to your health or treatment.
