https://phescreening.blog.gov.uk/2019/06/18/updating-sickle-cell-screening-standards-and-recommendations-we-want-your-feedback/

Sickle cell disease in childhood: standards and recommendations for clinical care — consultation now open

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We are working with the Sickle Cell Society

The NHS Sickle Cell and Thalassaemia (SCT) Screening Programme offers screening to pregnant women to find out if they are at risk of having a baby with sickle cell disease or thalassaemia major (serious inherited blood conditions).

We are working with the Sickle Cell Society to update the Sickle Cell Disease in Childhood: standards and guidelines for clinical care 2nd edition. The 3rd edition has been updated by Professor David Rees, Professor of Paediatric Haematology at King’s College London, and Dr Moira Dick, Consultant Paediatrician (retired), with the support of the Sickle Cell Society.

As you may be aware the standards have already been consulted on and your feedback was much appreciated. They have been amended in this final draft.

You can review the draft updated recommendations, which also includes the rationale and full references.

The clinical recommendations are written to:

  • support clinicians
  • ensure that every child has access to the same quality of care
  • provide an update to the 2nd edition that was published in 2010.

They have been written for:

  • paediatricians
  • haematologists
  • specialist nurses
  • psychologists
  • hospital trusts
  • commissioning authorities
  • peer-review services
  • anyone responsible for monitoring outcomes.

Please take this opportunity to review the recommendations and to give us your feedback. The consultation will close on 5 July at 5pm.

You can comment on all, or some, depending on the relevance to you and your role. We are only consulting on the revised clinical care recommendations component.

Grouping of recommendations

The recommendations have been divided into the following sections:

• organisation of care (community and hospital-based care)
• pathway of care (from newborn screening to transition to adult care)
• ongoing issues (often managed at home/in the community)
• chronic complications (usually requiring hospital care)
• acute complications (usually requiring urgent inpatient care)
• elective surgery and perioperative care
• specific treatments.

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