A new set of guidelines aimed at help improve the lives of children and young people living with sickle cell in the UK has been produced by the Sickle Cell Society and Public Health England.
The two organisations have joined forces to produce the 3rd edition of ‘Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care’.
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.
INFORMATION FOR PARENTS
They are also aimed at providing 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.
Pat McFadden MP, Chair of the All Party Parliamentary Group on Sickle Cell and Thalassaemia said: “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.”
He added: “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.
‘A CHALLENGING CONDITION’
“Sickle cell is a very challenging condition for families to cope with and the dissemination of good standards in care is really important”.
Sickle cell disorder is a long term inherited blood condition that can be life threatening.
It can cause excruciating pain (known as crisis) multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage.
People are often admitted to hospital with severe sickle cell crisis and given strong pain killers such as morphine to control the pain, intravenous therapy and antibiotics.
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.
Professor Baba Inusa, Lead Consultant Paediatric Sickle cell and thalassaemia, Evelina London Children’s Hospital said the new recommendations were “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.”
He continued: 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”.
The standards are now free to download from the Sickle Cell Society’s website: https://www.sicklecellsociety.org/paediatricstandards/