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30 Sep 2024
Greater Manchester leading the way in sickle cell disease treatment
Sickle cell disease (SCD) is a genetic, life-long condition, detected during pregnancy or soon after birth through the national screening programme. The serious and potentially life-threatening condition is the fastest growing genetic blood disorder, and can cause organ failure, strokes, loss of vision, and death.
People with SCD can experience painful episodes known as sickle cell crises that create an increased risk of serious infections and anaemia. Some patients with severe SCD require a complete blood transfusion, known as a red blood cell exchange (RCX), to remove the ’defective’ cells and replace them with healthy cells from donors using a machine. This treatment often needs to be carried out in an emergency setting as there can be complications.
Up until October 2022, sickle cell patients could only receive manual exchanges by presenting at hospital as an emergency out of hours patient. Manual exchanges are time-consuming, carry more risk for the patient and require admission to critical care. Sickle cell patients needed access to an automated RCX service so that they could more easily receive treatment at any time of day or night.
Health Innovation Manchester has been instrumental in raising awareness of the need for patients to be able to access an automated red cell exchange and supported the development of a pathway-focused approach to improving patient access to automated red-cell exchange, by working with all key stakeholders across the pathway.
Through this work, Manchester is now able to offer an emergency automated red cell exchange, a service that many other areas in England are continuing to drive towards. The service is provided by NHS Blood and Transplant (NHSBT) across the region.
The introduction of this new service means patients can now receive treatment at a hospital close to them without having to travel to Manchester regularly or in an emergency. It also prevents them having to be admitted to critical care to receive manual emergency red cell exchanges. This has reduced pressure on critical care staff and bed spaces.
The Health Innovation Network developed a short video, showcasing the improvement of care the use of the out of hours red blood cell exchange service has provided to patients in Greater Manchester. In this video, a SCD patient shares their experiences and highlights the vast improvement the service has made to their life.
Sickle cell patient, Elizabeth Naamorkor Caulley, welcomed the new service, and commented: “This new service is so helpful for people living with sickle cell disease. Having a number to call 24/7 when a crisis happens is so important. It means that we can be seen quickly by medical professionals who are experienced in supporting patients with sickle cell and who know exactly how to help.”
Mary Aziz, Programme Development Lead, Adoption and Spread at Health Innovation Manchester said: “I am delighted that we have been able to support the introduction of this vital service, which will transform the lives of many sickle cell patients across the region by providing them with easier access to a red cell exchange at all times.”
Dr Joseph Sharif, Consultant Haematologist and Northwest England HCC Deputy Clinical Lead in Sickle Cell, said: “Red cell exchange (RCX) transfusion is a key and often life-saving treatment for patients with sickle cell disease. This is often required in an emergency setting for complications such as acute chest syndrome and stroke which are the most common causes of death in sickle cell disease. For some patients with severe sickle cell disease, regular RCX transfusions are required to prevent long term complications. Prior to 2021 there was a lack of equitable access to emergency red cell exchange across the region.
”Through a collaborative service level agreement with NHS Blood and Transplant we have increased the regional provision of automated red cell apheresis services.
“Across GM, patients now have access to this life saving treatment regardless of the time of day and where they present across the region. Along with this we have also set up one of the first 24-hour sickle cell Emergency Department Bypass Units within the country giving patients across the region 24-hour access to telephone advice and access to a specialist unit for the management of a painful crisis. These service developments have improved access to vital care for our sickle cell patients across our region.”
Teresa Baines, Head of Deputy Therapeutic Apheresis Services at NHS Blood and Transplant, said: “This programme would not be possible without the generosity of people who give blood. The NHS always needs new donors, and we especially need more donors of Black heritage to help sickle cell patients like Tiffany who need ethnically matched blood. I’d encourage anybody who is able to give blood to come forward and help save lives.”