Myth vs Fact

Challenging common misconceptions about sickle cell care

Misconceptions can contribute to delays, stigma and poorer patient experiences. Understanding the facts helps support safer, more compassionate and person-centred care.

Pain Management and Analgesia

Myth Fact Reference
Patients asking for strong opioids are drug seeking. Patients with sickle cell disease may require strong opioids, higher doses or repeated doses to achieve adequate pain relief. Requests for opioids should not automatically be interpreted as drug-seeking behaviour. Management of Acute Painful Crisis and Chronic Pain in Adults with Sickle Cell Disorder (2025)
Opioids should be avoided in sickle cell disease because of addiction risk. Opioids remain a recommended treatment for moderate to severe vaso-occlusive pain when used appropriately and should not be withheld because of concerns about addiction alone. NICE CG143 - Sickle cell disease: managing acute painful episodes in hospital
Pain relief should wait until investigations are complete. Pain relief should not be delayed while taking a full history, performing an examination or awaiting investigations. Offer analgesia within 30 minutes of presentation. NICE CG143 - Sickle cell disease: managing acute painful episodes in hospital
If the first dose hasn't worked, they're exaggerating their pain. Severe pain often requires repeated assessment and escalation of analgesia until satisfactory pain relief is achieved. Management of Acute Painful Crisis and Chronic Pain in Adults with Sickle Cell Disorder (2025)
Every patient should receive the same pain management. Pain management should always be individualised. Where available, a personalised Pain Plan should guide treatment NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital

The Patient

Myth Fact Reference
A patient's behaviour tells you how much pain they're in. Pain cannot be judged by behaviour alone. The patient's self-report remains the most reliable indicator of pain. International Association for the Study of Pain (IASP) – Terminology
Patients don't know what they need. People living with sickle cell are experts in their own condition and previous treatments. Their experience should help inform clinical management. NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital
Patients can't tell whether they're having a sickle cell crisis. Most people living with sickle cell can distinguish vaso-occlusive pain from other types of pain and should be asked about their symptoms and previous experiences. NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital
Frequent hospital attendance means poor self-management. Recurrent hospital attendance is a recognised feature of sickle cell disease and should not automatically be interpreted as poor self-management or drug-seeking behaviour.. RCEM Best Practice Guideline: Management of Acute Presentations of Sickle Cell Disease (2024)
Young patients are usually otherwise healthy. Sickle cell disease can cause serious organ complications from childhood, even before symptoms become obvious. Chronic Organ Injuries in Children with Sickle Cell Disease (2021)

The Condition

Myth Fact Reference
Sickle cell is just a blood disorder. Sickle cell disease is a multi-system condition that can affect almost every organ in the body. RCEM Best Practice Guideline: Management of Acute Presentations of Sickle Cell Disease (2024)
Every crisis is the same. Every vaso-occlusive crisis is different. Pain can occur anywhere in the body, vary in intensity and last for different lengths of time—even in the same person. Guidelines for the Management of Sickle Cell Disease in Adults
Sickle cell pain is always acute. Chronic pain is common in adults living with sickle cell disease and may occur alongside acute vaso-occlusive crises. Chronic Pain in Patients with Sickle Cell Disease (Oxford NSSG, 2023)