The implementation of the screening programmes for sickle cell and thalassaemia has raised the profile of the conditions and increased the demand for services with increased numbers of cases being identified. A range of work is in hand to support clinicians responsible for patients with thalassaemia and sickle cell and help to ensure that patients have access to the same quality of care, including neonates identified by the screening programme.
A professional group led by the British Society for Haematology (on behalf of the British Committee for Standards in Haematology), and the United Kingdom Forum on Haemoglobin Disorders and supported by the Department and the voluntary sector has developed national standards for the clinical care of children with sickle cell disease. These guidelines were published in October 2006. Standards for the clinical care of children and adults with thalassaemia in the UK were published in June 2005. The guidelines were sponsored by the UK Thalassaemia Society and endorsed by the Department.
The Department is working with a range of key stakeholders to develop a model of a managed clinical network, to ensure that the potential benefits of the screening programme are achieved and that the complications that require specialist care are managed in the right place with appropriate resources. Ten such networks covering the country are proposed, building on existing expertise, to allow access to comprehensive care to be available across the country.