NHS Sickle Cell and Thalassaemia Screening Programme

Before we begin, you may actually be wondering: “What is screening?” According to a definition provided by Public Health England (PHE), screening is defined as “identifying apparently healthy people who may be at an increased risk of a disease or condition, enabling earlier treatment or informed decisions.” PHE is the home of all the NHS-led national screening programmes.

The NHS Sickle Cell Thalassaemia Screening Programme (NHSCTSP) is one such programme. As most of you know, thalassaemia and sickle cell disease are severe genetic blood conditions that can be passed on from parents to children through altered haemoglobin genes.

The NHSSCTSP offers antenatal screening to identify carriers of sickle cell and thalassaemia. They are then able to facilitate counselling and Pre-Natal Diagnosis and ensure affected babies are seen by health care professionals in a timely manner.

This programme is unique as it is the only screening programme which allows collaboration between national patient societies and Public Health England. UKTS and Sickle Cell Society work closely with the NHSSCTSP in areas such as patient engagement, public outreach, lobbying and campaigning, media support, policy and resource development.

Read the joint annual report from the UKTS and Sickle Cell Societies detailing our work with the screening programme

NHSSCTP Year 4 FINAL Report 1 Aug 21 -31 July 22: Read the report

NHSSCTP-Year-5-FINAL-Report-1-Aug-22-31-July-23: Read the report

Read about parents’ real life experiences of antenatal screening for thalassaemia and sickle cell in the 2017 report Parents Stories.

Read our joint 2023 report It’s In Our Genes, exploring service user experiences of the communication of screening results for thalassaemia and sickle cell