20 Common Questions from Healthcare Professionals
Pain Management and Analgesia
| Question | Answer | Reference |
|---|---|---|
| Why are patients with sickle cell asking for morphine by name? | Many people living with sickle cell have experienced repeated vaso-occlusive crises and know which analgesics have previously controlled their pain. Requesting a specific medication should be considered alongside their clinical assessment and, where available, their personalised Pain Plan. | NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital |
| Why isn't the first dose working? | Severe vaso-occlusive pain often requires repeated assessment and additional analgesia. If pain remains uncontrolled, reassess the patient and escalate treatment where clinically appropriate. | RCEM Best Practice Guideline: Management of Acute Presentations of Sickle Cell Disease (2024) |
| Can someone be in severe pain while appearing comfortable? | Yes, people express pain differently. Pain assessment should be based on the patient's self-report and clinical assessment rather than outward behaviour alone. | Pain Assessment in the Patient Unable to Self-Report: Clinical Practice Recommendations in Support of the ASPMN 2024 Position Statement |
| Why is rapid analgesia so important? | Delays in analgesia prolong unnecessary suffering and may worsen the patient's experience. NICE recommends offering analgesia within 30 minutes of presentation. | NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital |
| How do I tell the difference between opioid tolerance, dependence and addiction? | People living with sickle cell may receive repeated courses of opioids throughout their lives to manage painful crises. Opioid tolerance means higher doses may be needed over time to achieve the same level of pain relief. Physical dependence is an expected physiological response to ongoing opioid therapy and is characterised by withdrawal symptoms if opioids are stopped suddenly. Neither should automatically be mistaken for addiction, which is characterised by behaviours such as impaired control, compulsive use, continued use despite harm and craving. Assess the patient's overall clinical presentation rather than opioid requirements alone. | Faculty of Pain Medicine – Opioids Aware: Terminology |
Understanding The Patient
| Question | Answer | Reference |
|---|---|---|
| Why might some patients avoid or delay coming to hospital? | Many people living with sickle cell try to manage pain at home before attending hospital. Previous experiences of mistrust, stigma, neglect and poor-quality care may also become barriers to seeking emergency treatment. | Reducing Health Inequalities for People Living with Sickle Cell Disorder (The King's Fund, 2023) |
| Why do some patients know exactly what treatment they need? | Many people living with sickle cell have managed painful crises throughout their lives and know which analgesics, doses and routes of administration have previously been effective for them. Their lived experience should help inform treatment alongside clinical assessment. | NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital |
| Why are some patients admitted so frequently? | The frequency and severity of vaso-occlusive crises varies considerably between individuals. Frequent 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) |
| Why don't some patients trust healthcare professionals? | Trust is shaped by previous experiences. Delays in pain relief, feeling unheard, stigma and inconsistent care can affect how patients engage with healthcare services. Listening, communicating clearly and providing timely treatment can help rebuild trust. | Reducing Health Inequalities for People Living with Sickle Cell Disorder (The King's Fund, 2023) |
| What do people living with sickle cell wish healthcare professionals understood? | People living with sickle cell want healthcare professionals to listen to them, believe their pain, recognise their knowledge of their own condition and involve them in decisions about their care. Small actions such as reading their Pain Plan, communicating clearly and treating patients with dignity can have a lasting impact on their experience. | No One's Listening – An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care (APPG on Sickle Cell & Thalassaemia, 2021) |
Pain Plans
| Question | Answer | Reference |
|---|---|---|
| What is a personalised Pain Plan? | A personalised Pain Plan is a clinical management plan that outlines the recommended approach to treating an individual's sickle cell pain. It is developed by the patient's specialist team based on treatments that have previously been effective for that individual and is designed to guide timely prescribing and management during an acute painful episode. How is it different? • Care Plan – Covers a person's overall health and care needs. • Treatment Plan – Outlines the management of a specific condition or episode of care. |
|
| What else might a Pain Plan be referenced as? | The terminology varies between hospitals and NHS organisations. You may see a Pain Plan referred to as a: • Personalised Pain Plan • Individualised Pain Plan • Individual Care Plan • Sickle Cell Pain Plan • Emergency Department (ED) Management Plan • Sickle Cell Care Plan (in some trusts) Although the name may differ, these documents all provide personalised guidance to support the safe and timely management of a patient's sickle cell pain. |
|
| Where do I find a patient's Pain Plan? | If the patient advises they have a personalised Pain Plan, continue searching for it while treatment is underway. Check the electronic patient record, previous admission documentation, any patient-held copy and, if necessary, contact the specialist haemoglobinopathy or haematology team. | |
| What if they don't have a Pain Plan? | A missing Pain Plan should not delay treatment. Offer analgesia promptly in line with NICE guidance, ask the patient what has worked during previous crises and use this to inform immediate management. If you're unsure about the most appropriate treatment, escalate promptly to a senior clinician or doctor while continuing to manage the patient's pain. | NICE CG143 – Sickle Cell Disease: Managing Acute Painful Episodes in Hospital |
| Do I have to follow the Pain Plan exactly? | A Pain Plan is the starting point for individualised care - not the limit of it. It should guide treatment but does not replace clinical judgement. If pain remains uncontrolled, reassess the patient, escalate treatment where clinically appropriate and continue to treat the patient in front of you. Some patients may require additional or alternative analgesia beyond their usual Pain Plan, while others may require less. | Management of Acute Painful Crisis and Chronic Pain in Adults with Sickle Cell Disorder |
Understanding The Condition
| Question | Answer | Reference |
|---|---|---|
| What actually causes a vaso-occlusive crisis? | A vaso-occlusive crisis occurs when sickled red blood cells become rigid and stick to blood vessel walls, slowing or blocking blood flow. This reduces oxygen delivery to tissues, causing ischaemia, inflammation and pain. | NICE CKS – Sickle Cell Disease |
| Is every pain episode the same? | No. Pain can occur anywhere in the body, vary in intensity and last for different lengths of time. Every vaso-occlusive crisis is different—even for the same person. | Guidelines for the Management of Sickle Cell Disease in Adults |
| Why is every patient's treatment different? | Sickle cell disease affects everyone differently. Two patients with similar blood results may have very different symptoms, pain patterns and treatment requirements. | Learn more |
| What serious complications should I always consider? | Not every presentation is a straightforward vaso-occlusive crisis. Always assess for other serious complications such as acute chest syndrome, stroke, infection, acute anaemia and other causes of deterioration. | RCEM Best Practice Guideline: Management of Acute Presentations of Sickle Cell Disease (2024) |
| Can patients be in severe pain without obvious physical signs? | Yes. Pain is subjective, and people express it differently. Some patients may appear calm, talk, laugh or use their phone while experiencing severe pain. Pain should be assessed using the patient's self-report and clinical assessment—not behaviour alone | International Association for the Study of Pain (IASP) – Definition of Pain |