Information on providing care for people with sickle cell disease and thalassaemia syndromes has been published by the NHS.
The Royal College of Nursing accredited Competence Framework: Caring for people with sickle cell disease and thalassaemia syndromes, details what nurses need to know if they are looking after patients with these conditions.
There are concerns that the small number of trained and experienced healthcare workers is causing services for these diseases to become marginalised.
This is despite the fact that the number of people who have sickle cell and thalassaemia across England is on the rise.
Nurse advisor at the Royal College of Nursing, Rose Gallagher, said: “This project is designed to better equip nurses to deal with sickle cell and thalassaemia. This effort has never been more urgent.
“Despite the fact that sickle cell is now the most common serious genetic disease in England, we still see tragedies arising from ignorance and misunderstandings. Nurses are in a unique position to prevent these.”
Guidance from the NHS Sickle Cell and Thalassaemia Screening Programme will inform nurses on how to provide support to patients at times of acute pain or blood transfusion, and also how to help with the psychological and social needs that exist over a longer time.
Professor Elizabeth Anionwu, emeritus professor of nursing at the University of West London said: “These competences set out what nurses should be able to do, should know about and understand, and how they should react appropriately. These competences cover each level and band of nurse from junior to senior.”
Anne Welsh, a sickle cell patient and chair of the Sickle Cell Society added: “I am hoping that, if widely adopted, Framework will make a huge difference to the whole patient experience - inside and outside of the hospital.”
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