The Sickle Cell Society, the only national charity in the UK that supports and represents people affected by sickle cell disease, has recently published the 3rd edition of “Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care”.
This is a result of a collaboration between clinicians, parents and carers, the Sickle Cell Society and the UK Forum on Haemoglobin Disorders, together with the NHS Sickle Cell and Thalassaemia Screening Programme and Public Health England.
The new recommendations are an update of the 2nd edition published in 2010 and aim to support paediatricians, haematologists, specialist nurses and psychologists to ensure that children get access to the best possible health cares and clinical outcomes wherever they live in the UK.
The document updates clinical recommendations in several key areas and emphasises the importance of collecting data and measuring outcomes against robust standards.
Professor Baba Inusa, Lead Consultant of the Paediatric Sickle Cell and Thalassaemia centre at Evelina London Children’s Hospital, underlined: “The 3rd edition of the standards and recommendations for Clinical Care (Sickle cell disease in childhood) published November, 2019 is a very useful document that was written with great care that sets the scene for further research to support the development of evidence-based data for the benefit of patients. It will serve as impetus for clinicians, a goal to achieve for the benefit of our patients. The executive summary provides a well laid out plan for audit of service provision. I recommend this highly a tool that other countries may wish to access in building their own standards of care”.
Ade and Caroline parents from East Sussex remarked: “As parents of two children with sickle cell living in a part of the UK where the condition is not common, we welcome the publication of these updated Paediatric Standards which will help guide health professionals deliver the best possible healthcare around the country… With this in mind and in hand, no one need fear their quality of care anywhere in the UK. We plead and say, USE IT”.
Discover more about the new recommendations here!
The standards are now free to download from the Sickle Cell Society’s website.