NHS Sickle Cell and Thalassaemia Screening Programme

The GEP has supported the NHS Sickle Cell and Thalassemia Programme (SCTP) in a project to produce a wide range of new and updated resources for stakeholders, in collaboration with the Sickle Cell Society and the UK Thalassaemia Society.

In January 2021, a live webinar was held to introduce the new publications, and some updates to existing ones, via Microsoft Teams. These included the new Sickle Cell and Thalassaemia Counselling Knowledge and Skills Manual, and newly produced haemoglobinopathy carrier leaflets from the screening programme. The Sickle Cell Society showcased a radically revised Parent’s Handbook and Paediatric Standards document.

Post-webinar resources are available here:

Objectives and aims

In line with the objectives of the SCTP, the webinar aimed to contribute to the continued improvement of screening services, and of the experience of patients and their families by:

  • informing SCTP’s stakeholders about the latest resources for use in their practice;
  • updating stakeholders on recent developments within the programme, within screening and within PHE;
  • reflecting on the patient experience of screening;
  • offering a platform for any questions and comment from stakeholders and promoting discussion about screening, using regular Q&A sessions, together with Menti polling throughout the event;
  • engaging with stakeholders along the screening pathway; and
  • promoting and celebrating the work of the programme and its partners.

Professor Dame Elizabeth Nneka Anionwu DBE CBE FRCN FQNI PhD chaired the event. The speakers included patient representatives sharing their experiences of life with sickle cell and with thalassaemia, leading voluntary society representatives, clinical and laboratory advisers to the screening programme, and screening programme team members.

The webinar was aimed at anyone involved in screening for sickle cell disease or thalassaemia, or in supporting families during screening and beyond. More than 400 health professionals, educators and voluntary sector workers registered to attend.

Last updated on 4th June 2025