https://phescreening.blog.gov.uk/2017/10/05/we-need-your-input-on-the-new-sickle-cell-and-thalassaemia-screening-programme-handbook/

We need your input on the new sickle cell and thalassaemia screening programme handbook

The NHS Sickle Cell and Thalassaemia Screening (SCT) Programme is updating its national programme handbook that provides guidance and support to healthcare professionals involved in the linked antenatal and newborn screening pathway.

We have launched a period of consultation on the draft document. This consultation ends on Thursday 26 October 2017, and we would really like your feedback.

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The SCT programme screens pregnant women to find out if they’re at risk of having a baby with sickle cell disease or thalassaemia major and screens babies for sickle cell disease as a part of the newborn bloodspot screening programme.

The updated programme handbook includes information about:

  • the antenatal screening pathway with specific guidance on how to care for known ‘at-risk’ couples
  • the screening process and how to follow up screening results
  • the family origin questionnaire and important issues for completion in high and low prevalence trusts
  • special circumstances to be aware of during antenatal screening including adoption, blood transfusions and bone marrow transplant
  • paternal screening and tips to improve participation
  • counselling and referral for prenatal diagnosis (PND)
  • testing in subsequent pregnancies
  • the newborn screening pathway, what results are expected and how to deal with them
  • sickle cell disease, thalassaemia major and other haemoglobinopathy disorders and carrier states
  • patient support organisations
  • failsafe, quality assurance and data collection
  • resources and training courses to support the screening programme

How you can help

We would like feedback on the draft handbook from anyone involved in the SCT screening pathway.

Please review the draft updated handbook document and then complete our survey. We would really appreciate your help with this.

Please note we have already conducted an extensive consultation on Chapter 5 (counselling and referral for prenatal diagnosis), so this is excluded from the current consultation.

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