Despite existing for many decades, sickle cell disease (SCD) still faces a knowledge gap among the public and healthcare professionals (HCPs). Educating HCPs about SCD pathophysiology, care, and management is crucial to bridge this gap and breaking down healthcare-related stigmas. In this blog, we will hear directly from patients, shedding light on their experiences and emphasising the importance of compassionate care for individuals with SCD.
Quotes from Patients:
“Sometimes, I feel like people don’t believe how much pain I’m in because of my sickle cell. It’s frustrating when they question my pain levels.” (13 years old patient).
“I sometimes feel scared when I have to go to the hospital for my sickle cell pain. I wish the nurses and doctors would understand how much it hurts and give me the right pain medicine to make me feel better.” (10 years old patient).
“I often feel misunderstood and dismissed when I’m in the hospital during a sickle cell crisis. It’s frustrating when healthcare providers question the severity of my pain and don’t take it seriously. I wish they could see the invisible battle I’m fighting on the inside.” (30 years old patient).
These quotes highlight the emotional distress and concerns that children, young people, and adults with sickle cell disease experience when they present to the hospital during a crisis. It emphasises the need for healthcare professionals to approach these situations with empathy, understanding, and provide prompt pain management to alleviate the discomfort and fear these patients endure.
Improving Pain Management and Care:
Prompt and effective pain management is paramount for individuals with SCD. Here are some steps to improve the care provided:
- Implement clear pain pathways: Hospitals should establish easily accessible sickle cell pain pathways and policies that guide healthcare professionals in managing pain promptly. Within 30 minutes of triage in the emergency department, pain relief should be administered, and adequate pain control should be achieved within 60 minutes (NICE 2012).
- Education and training: SCD education should be integrated into undergraduate nursing and medical curricula. Additionally, assigning link nurses in areas such as the emergency department (ED) and wards, along with organising continuing professional development teaching, can enhance HCPs’ knowledge and understanding of SCD care and management.
- Empathy and trust-building: Healthcare professionals should prioritise building trusting relationships with patients and their families. Listening attentively, validating their experiences, and addressing their concerns will help establish a compassionate and supportive environment.
Taking Action and Raising Awareness:
As World Sickle Cell Day approaches on June 19th, we can all contribute to breaking the stigma and improving care for individuals with SCD. Here’s what you can do:
- Educate yourself: Explore the available resources to increase your knowledge and understanding of SCD. Stay informed about the latest research, treatments, and best practices.
- Share your knowledge: Engage with platforms that raise awareness of SCD on social media. Share accurate information, personal stories, and experiences to dispel myths and misconceptions.
- Advocate for change: Encourage healthcare institutions to prioritise SCD education and implement policies that ensure compassionate care for patients. Support initiatives that aim to improve pain management protocols and foster an empathetic environment.
By listening to the voices of patients with sickle cell disease, we gain valuable insights into the challenges they face and the care they require. It is essential for healthcare professionals to believe and validate the pain experienced by these patients. By educating ourselves, advocating for change, and promoting compassionate care, we can collectively work towards a healthcare system that better serves individuals with SCD, offering them the dignity, respect, and support they deserve.
References
AlJuburi, G. et al. (2012). Trends in hospital admissions for sickle cell disease in England, 2001/02–2009/10, Journal of Public Health, 34(4), pp.570–576, doi.org/10.1093/pubmed/fds035
Glassberg, J.A., Tanabe, P., Chow, A., Harper, K., Haywood,C. Jr., DeBaun, M.R. and Richardson, L.D. (2013) Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med. 62(4), pp.293-302. doi: 10.1016/j.annemergmed.2013.02.004
Glassberg, J.A. (2017) Improving Emergency Department-Based Care of Sickle Cell Pain. Hematology, Am Soc Hematology Education Program. (1)pp. 412–417. doi: https://doi.org/10.1182/asheducation-2017.1.412
National Institute for Health and Care Excellence. (2012). Sickle cell acute painful episode: management of an acute painful sickle cell episode in hospital. Clinical guideline [CG143]. Retrieved from https://www.nice.org.uk/guidance/cg143
No One’s Listening: An Inquiry Into The Avoidable Deaths And Failures Of Care For Sickle Cell Patients In Secondary Care https://www.sicklecellsociety.org/wp-content/uploads/2021/11/No-Ones-Listening-Final.pdf
Oti, A.E., Heyes, K., Bruce, F. and Wilmott, D. (2023) A rapid evidence assessment of sickle cell disease educational interventions. Journal of Clinical Nursing. 32(5-6), pp. 812-824. doi: 10.1111/jocn.16370.
Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care (2019) https://www.sicklecellsociety.org/resource/paediatricstandardsresource/