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Thalassaemia: Screening

Volume 470: debated on Tuesday 8 January 2008

To ask the Secretary of State for Health (1) what support his Department is providing to clinicians to deal with patients identified as having (a) a sickle cell disease and (b) Thalassaemia through the National Screening Programme; (173235)

(2) with reference to the answer of 26 April 2007, Official Report, column 1263W, on blood: diseases, what progress his Department has made on the development and management of 10 managed clinical networks for Thalassaemia and sickle cell disease.

The Department has been working with a range of key stakeholders to develop a model of 10 proposed managed clinical networks. The national health service plan set out a commitment to introduce new and effective screening programmes for women and children including a new national linked antenatal and neonatal programme for sickle cell and thalassaemia. The programme has now implemented newborn screening and 100 per cent. of newborn babies are now offered screening for sickle cell. Antenatal screening is expected to be fully implemented by spring 2008. The programme is expected to identify approximately 300 screen positive affected babies a year with sickle cell and haemoglobin variants from 559,098 babies across England. The benefits of this specialist care can then be managed in the right place with appropriate resources. The clinical network will build on existing expertise, to allow access to comprehensive care to be available across the country.

A working group has been established to oversee the roll-out of the managed clinical networks, and a number of centres have now been identified.

Supporting the national screening programme a number of recent initiatives to increase services for sickle cell and thalassaemia are now underway. These include:

Funding of training posts for registrars, nurse consultants and clinical scientists to increase the number of staff with specific haemoglobinopathy expertise.

Recognition by the Royal Colleges of the need to increase training in haemaglobinophies including changes to examinations and syllabus.

Funding for a database has been provided to track patients and the care they require.