Transforming Emergency Care for Sickle Cell Patients

Sickle cell disease is the fastest-growing genetic condition in the UK, yet awareness among healthcare professionals remains inconsistent. For patients in Cheshire and Merseyside, this knowledge gap could be life-threatening. During a sickle cell crisis, rapid treatment with appropriate analgesia and fluids is crucial—delays can lead to serious complications including stroke, acute chest syndrome, and organ damage.

Patients and families described repeatedly educating emergency staff about their condition while in severe pain. The standard protocols for pain management don't apply to sickle cell patients—they typically require much higher doses of stronger medications. Without this understanding, patients often experienced inadequate pain relief and the distressing perception that staff didn't believe the severity of their crisis.

Individual patients have specific crisis patterns and medication requirements that staff in busy A&E departments simply couldn't know. Each patient's baseline haemoglobin levels, effective pain medications, and previous complications are unique. Without access to this information, even well-intentioned staff couldn't provide optimal care.

The situation created a vicious cycle: poor emergency experiences led patients to delay seeking help during crises, arriving at hospital later when their condition was more severe and harder to treat.

Cheshire & Merseyside ICB partnered with TinyMedicalApps to implement the Sickle Cell Passport—a digital tool designed to bridge the knowledge gap and ensure patients receive rapid, appropriate care during crisis.

Each passport contains the patient's personalised crisis protocol, developed with their specialist haematology team. This includes their specific analgesia requirements, baseline observations, known triggers, previous complications, and emergency contacts. The passport follows NICE guidelines for sickle cell crisis management while being individualised for each patient.

A critical feature is the "time to analgesia" protocol. The passport clearly states the 30-minute target from arrival to pain relief and provides step-by-step guidance for emergency staff. Families report this has transformed their experience—staff now understand the urgency and have clear guidance on appropriate treatment.

The programme included targeted education for all A&E departments across Cheshire and Merseyside. Rather than generic sickle cell training, the focus was on using the passport system effectively and understanding why rapid, protocol-driven care matters for this patient group.

Integration with the regional care record means the passport is accessible to any healthcare provider in the network. Patients no longer need to carry paper documents or remember complex medical details while in severe pain—their information is available digitally to anyone treating them.

The improvement in emergency care has been dramatic. Time to analgesia during sickle cell crisis has reduced by 47%—patients are now typically receiving appropriate pain relief within the recommended 30-minute window. This single metric represents transformed experiences for patients who previously waited hours for adequate treatment.

Protocol compliance across A&E departments has reached 94%. Staff report feeling more confident treating sickle cell patients because they have clear, individualised guidance rather than trying to apply generic protocols to a complex condition.

Patient experience scores have improved dramatically, with 93% now rating their emergency care positively compared to just 31% before the programme. Crucially, patients report feeling believed and respected—the psychological burden of having to advocate for themselves while in crisis has been significantly reduced.

Hospital stays have shortened by 28% on average. Faster, more appropriate initial treatment means crises are controlled more quickly, reducing the need for extended admissions. This benefits patients and has significant cost implications for the health system.

Perhaps most importantly, patients are seeking help earlier. The improved experiences have rebuilt trust in emergency services, meaning patients present at the appropriate time rather than delaying until their condition is more severe.

Cheshire & Merseyside ICB is expanding the programme to include regular health monitoring features. Patients will be able to log daily symptoms and wellbeing indicators, helping specialist teams identify patterns and intervene before crises develop.

A new module focused on transition to adult services is being developed, recognising that young people with sickle cell often experience poorer outcomes during this period. The passport will help maintain continuity as patients move from paediatric to adult care.

The ICB is working with neighbouring regions to create a North West network, ensuring patients receive consistent care wherever they present across the region. This is particularly important for a patient population that may need emergency care while travelling or visiting family.