The Sickle Cell Society, the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life has introduce new standard of Clinical care for children and young people living with sickle cell in the UK.
The Sickle Cell Society, in partnership with Public Health England have recently produced the 3rdedition of ‘Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care’.
Approximately 15,000 people in the UK live with sickle cell (a life-threatening, inherited blood condition) with around 270 babies born each year with the condition. 1 in 76 babies born in the UK are ‘carriers’ or trait (i.e. they do not have the condition but have one copy of the recessive sickle cell gene). The new recommendations are an update of the 2nd edition published in 2010 and have been written to support paediatricians, haematologists, specialist nurses and psychologists to ensure that children get the best possible care and clinical outcomes. It will provide a useful overview for parents to see if services and healthcare are available in the area where they live and to know what they can expect. This edition has also added in measurable standards to enable hospital trusts, commissioning authorities and peer review services to see how well different hospitals are performing.
The new edition reflects what has been learned from peer reviews of hospital trusts conducted nationally during 2010-2011 and 2014-2016 which looked at what services were being delivered, measured against quality indicators and standards and also includes the recent guidance from NHS England on specialist services and networks. It updates clinical recommendations in several key areas and emphasises the importance of collecting data and measuring outcomes against robust standards.
Rt. Hon. Pat McFadden MP, Chair of the All Party Parliamentary Group on Sickle Cell and Thalassaemia stated: “I welcome the publication of these updated standards for sickle cell care among children and thank the Sickle Cell Society and everyone involved in the preparation of this document. I very much hope these standards will be used by health professionals and NHS trusts to improve sickle cell care for children and to ensure consistency of treatment around the country. Sickle cell is a very challenging condition for families to cope with and the dissemination of good standards in care is really important”.
Professor Baba Inusa, Lead Consultant Paediatric Sickle cell and thalassaemia, Evelina London Children’s Hospital added: “The 3rdedition of the standards and recommendations for Clinical Care (Sickle cell disease in childhood) published November, 2019 isavery 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. It is another big leap in the knowledge base of treating sickle cell, bridging the gap between the patients, parents (carers), and professionals all in partnership spirit for the betterment and improvements in caring for the patient population. 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”.
This third edition of the clinical recommendations and standards for the care of children with sickle cell has been published as a result of collaboration between clinicians, parents and carers, the Sickle Cell Society and UK Forum on Haemoglobin Disorders, together with the NHS Sickle Cell and Thalassaemia Screening Programme and Public Health England.
The standards are now free to download from the Sickle Cell Society’s website: https://www.sicklecellsociety.org/paediatricstandards/
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