Patient and clinician perspectives on living with Sickle Cell disease and the importance of a multidisciplinary approach
For a full transcript of this programme please click here.
This edition has been funded by donations from Pain Concern’s friends and supporters.
An estimated 15,000 people in the UK are living with Sickle Cell disease and at least 250,000 are carriers. Dr Elizabeth Rhodes explains the causes and symptoms of the genetic blood disorder, the areas where it is most prevalent and who is affected.
One such patient is Khadijat Jose, who describes her experiences growing up in Nigeria and why being a carrier of the disease is an advantage in countries with Malaria. For those with the condition however, each day can bring severe pain often requiring admission to hospital. Dr Oliver Seyfried highlights the life-limiting effects of this pain, especially on young people, and the challenges it poses in all spheres of life.
Self-management is therefore hugely important for those with Sickle cell disease, whether the pain experienced is mild or severe. Paul discusses the different approaches taken by the Red Cell Pain Management team at St George’s Hospital with clinical psychologist Dr Jenna Love and specialist physiotherapist Rebecca McLoughlin. Both emphasize the importance of being able to tackle sickle cell pain from an emotional and psychological perspective as well as a physical one.
Thanks to progress in medical training and increased awareness, the quality of life for Sickle Cell patients continues to improve. Dr Oliver Seyried and Dr Jenna Love mention the national sickle cell screening programme and parent education, on which more information can be found here: https://phescreening.blog.gov.uk/category/sct/
- Dr Elizabeth Rhodes, Consultant Haematologist at St. George’s Hospital in London
- Khadijat Jose, PhD student at Cardiff University
- Dr Oliver Seyfried, Consultant in Pain Medicine and Anaesthesia at St. George’s Hospital in London
- Dr Jenna Love, Clinical Psychologist at St George’s Hospital in London
- Rebecca McLoughlin, Specialist Physiotherapist at St George’s Hospital in London.