Sickle Cell Diseases
(asked on 8th September 2016) - View Source
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, how many people have sickle cell disease in the UK; and what assessment he has made of the adequacy of provision to improve the quality of life and life expectancy of people with that disease.
The Sickle Cell and Thalassaemia screening programme is a linked antenatal and newborn screening programme which is offered to all pregnant women and their babies. It is also offered to fathers to be, where antenatal screening shows that the mother is a genetic carrier.
Table 1 shows the number of screen positive babies detected in England since the establishment of Public Health England (PHE) in 2013.
Table 1. Sickle cell disease (SCD) screen positive babies: England | ||||
Year | Screen Positive Babies | Total Screened | Rate per 1000 | 1 in x |
2013/14 | 319 | 668,117 | 0.48 | 2,094 |
2014/15 | 278 | 661,432 | 0.42 | 2,379 |
Total for whole period | 3,003 | 6,056,663 | 0.50 | 2,017 |
Data source: PHE Screening
Although NHS England does not routinely collect the information requested on the provision to improve quality of life and life expectancy of people with the disease, it is is working to ensure excellent services for people identified with Sickle Cell disease.
NHS England has included treatment services for haemoglobinopathies within the prescribed specialised services commissioned centrally by NHS England and set up a Clinical Reference Group of sickle cell and thalassaemia experts and patient representatives specifically to advise NHS England on commissioning services for haemoglobinopathies.
NHS England is also developing a commissioning policy for the management of iron overload in sickle cell and thalassaemia patients. It is also about to under-take a national review of haemoglobinopathy services, commencing in 2016-17.