England’s first-ever guidelines for adult sickle cell care were launched today (Wednesday 9 July) by the Sickle Cell Society.
The standards include detailed guidelines on primary care, specialist networks for hospitals and clinics, management of chronic and acute conditions, blood transfusions, and screening.
Dr Allison Streetly, Programme Director for the Sickle Cell and Thalassaemia Screening Programme, said: “The introduction of these much-needed national guidelines on caring for adults with the disease is greatly welcome.
Together with the care standards for thalassaemia, they lay the foundation for a care framework where patient needs are properly understood both close to where people live and in specialist centres.
“An important next challenge will be to improve understanding of sickle cell and thalassaemia in schools, the workplace and in everyday lives, as well as among nurses and doctors. These standards will underpin education and deliver the funding where it is needed in future.”
Sickle cell is one of the most commonly inherited genetic diseases in England. Around 240,000 people carry the gene with 12,500 people living with the disease, making it as common as cystic fibrosis. Events will be taking place across the country during July, run by local sickle cell care centres and support groups.
The announcement of the new guidelines coincides with Sickle Cell Awareness Month, with activities across the country running throughout July to promote the guidelines and improve awareness and management of sickle cell disease.
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“I hope to see better collaboration between the UK SCS and the Nigerian NGOs on sickle cell initiatives in terms of funding for increased awareness” – Florence Okah-Avae, Lagos, Nigeria
“I think practices should raise more awareness of the disease. I personally have benefited from the awareness programmes” – Neri, Nigeria