According to a report, individuals with sickle cell disease have been hesitant to seek ambulance assistance due to previous negative encounters.

Patients highlighted issues such as inadequate pain management, erratic care, an overwhelming number of questions asked during intense pain episodes, and a feeling of being unheard or disrespected.

These insights emerged from a research initiative commissioned by the London Ambulance Service (LAS) NHS Trust and conducted by the Sickle Cell Society.

In response, LAS has created an action plan aimed at enhancing care for patients with sickle cell disease. This plan involves more comprehensive training for frontline healthcare providers and better management of pain relief.

Additional concerns noted included insufficient urgency in responses, delays in attendance, preferences for specific hospitals being overlooked, and challenges in transferring information from LAS to emergency departments.

A joint statement from four individuals—comprising one sickle cell patient, two parents of young adults with the disease, and a widow of a patient—summed up: “There is widespread agreement among those we spoke to that most are very hesitant to request ambulance assistance unless it’s absolutely necessary, and only when the pain is so severe that going to the hospital is unavoidable.

“This reluctance stems from various factors: the anxiety over possibly not receiving adequate pain relief during transport, the feeling of not having their needs acknowledged, and the belief that they might be perceived as seeking drugs.”

They noted that many sickle cell patients held negative views about LAS, often influenced by prior experiences.

The report’s suggestions included actively involving sickle cell patients in the training of LAS staff and ensuring that employees have a fundamental understanding of the condition.

Dr. Fenella Wrigley, the chief medical officer at LAS, stated, “Although we have made some progress, I recognize the ongoing necessity to cater to the needs of patients with sickle cell disorder and ensure they feel heard.”

“Our emergency call handlers and ambulance teams are frequently the first point of contact with the NHS for those experiencing a sickle cell crisis, making it essential that we advocate for them.”

“We are committed to providing exceptional urgent and emergency care for everyone in our city. A modern ambulance service requires delivering more personalized assistance, including for sickle cell patients.”

John James, the chief executive of the Sickle Cell Society, remarked, “This report unequivocally outlines the significant challenges faced by sickle cell patients in London when they are at their most vulnerable.

“It is unacceptable that individuals with a serious, life-threatening health issue are subject to inadequate care, delays, and unhelpful attitudes from ambulance personnel.”

“We applaud LAS for commissioning this report and their commitment to developing an action plan to implement its recommendations. It is crucial that this leads to tangible, lasting improvements.”

There are approximately 17,500 individuals with sickle cell disease in the UK, particularly prevalent among those with African or Caribbean heritage.

Symptoms include intense pain, potentially life-threatening infections, and anemia.