Sickle Cell Diseases: Diagnosis

The Government is committed to improving the lives of those living with rare diseases such as sickle cell disease. Helping patients get a final diagnosis faster is one of the four priorities of the UK Rare Diseases Framework. We published the annual England action plan in February 2025, where we report on the steps we have taken to advance this priority.

In England, there are around 17,000 people living with sickle cell disease, an inherited blood disorder with around 250 new cases a year. It is the fastest growing genetic condition in the country. It is generally more common in people of Black African and Black Caribbean heritage (77% of patients) however, we recognise that the condition is not unique to this community and NHS England remain committed to delivering quality improvement to all patients living with sickle cell.

All pregnant women in England are offered a blood test to find out if they carry a gene for thalassaemia. Those at high risk of being a sickle cell carrier are offered a test for sickle cell. As part of the National Health Service Antenatal Sickle Cell and Thalassaemia (SCT) Screening Programme, the Family Origin Questionnaire (FOQ) is mandatory for all booking blood requests. By recording accurate family origin details, the FOQ enables midwives to identify women at higher risk. For example, women with Latin American ancestry extending back two generations are considered high risk and are offered screening accordingly.