Spotlight on Sickle Cell Disease
September is Sickle Cell Awareness Month, raising awareness of the disorder and the challenges people face.
Around 15,000 people in the UK are affected, and about 300 babies are born with sickle cell each year.
“We are seeing many more patients with sickle cell disease in Norwich and across the East of England than we did even a decade ago, and it is a condition that has historically been underserved by the NHS,” said Dr Suzanne Docherty, Haematology Consultant & Red Cell Lead. “With the recent formation of national Red Cell Networks and their investment in our local service, we aim to give people affected by sickle cell disease the same level of expert care and access to drugs, red cell exchange transfusions and clinical trials as the best centres in the UK. We hope to enable our families affected by sickle cell disease to live their lives to their fullest potential.”
Sickle cell affects haemoglobin, the substance in red blood cells that carries oxygen around the body. The unusual shape of sickled cells can cause anaemia and painful episodes called crises, as well as complications including stroke, acute chest syndrome and bone damage.
Amanda J Hutchings, Lead Haematology Nurse said: “We received training to perform red cell exchanges for patients with sickle cell anaemia in 2013. We started our first patient on a planned programme shortly after that, which significantly improved his quality of life and prevented emergency hospitalisation in a crisis.”
Pain management is another critical part of care. Katherine Dyer, Lead Nurse for the Pain Management Service, said: “Increasing numbers of patients with sickle cell are being seen by the acute pain service. They arrive in significant distress due to poorly controlled pain; heightened awareness and advanced care planning for these patients could help reduce confusion and delay in their care, ultimately improving their experience by getting their symptoms under control more quickly.”
Raising awareness is crucial to improving support for patients. Stuart Halifax, Medical Secretary in Haematology, said: “Raising awareness for sickle cell is vital, because with better understanding comes earlier care, better support and brighter outcomes for those living with the condition.”
Patients also shared their experiences. One patient said: “Despite its impact, SCD has historically received less research funding than other genetic conditions. Awareness fosters community support, reduces stigma and encourages people to seek care without fear.”
Another patient said: “Every delay, every doubt, every dismissal in hospital makes living with sickle cell harder than it already is. Agony is the price we pay for lack of awareness. With sickle cell, extra awareness could be the difference between saving a life and losing one. Speak up for us, as we usually don’t have the strength to do so ourselves.”
Sophie Briggs, Haematology Specialist Nurse for red cells added: “It is important that we raise awareness about sickle cell disorder so that we can better support our patients.
“There is a national e-learning course, which also counts towards CPD points, and I would highly recommend all healthcare professionals complete it.”