A New NCEPOD Study – Sickle Cell Disease and Thalassaemia

The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) aim to review medical clinical practice and make recommendations to improve the delivery of care. NCEPOD do this by undertaking confidential surveys - mandated by the Department of Health - covering a wide variety of aspects of medical care and making recommendations for clinicians and management to implement.

Although there are relatively few haemoglobinopathy patients in the UK, the numbers have been increasing with the birth prevalence of haemoglobinopathies now exceeding cystic fibrosis. NCEPOD are carrying out a study looking at all patients who die with sickle cell disease and thalassaemia in the UK. Data will be collected on all patients, both adults and children, who die between 1st January 2005 and 31st December 2006. Both community and hospital deaths will be included. The study aims to identify factors that enhance the care of haemoglobinopathy patients, as well as identifying remediable factors in the quality of care of these patients.

Issues to be addressed were determined by a multi-disciplinary group of experts, and include:

• The organisation of outpatient management.
• Healthcare professionals’ experience in managing haemoglobinopathies.
• Pain management.
• Mortality associated with surgery.
• Patterns of clinical pathology.
• The availability and use of local guidelines and protocols.

A questionnaire will be sent to the healthcare professional(s) responsible for the management of the patient.

If you would like any further information on this study, or any of the other studies NCEPOD are running, please contact us:

NCEPOD, Tel: 020 7920 0999
Epworth House, Fax: 020 7920 0997
25 City Road, Sicklecell@ncepod.org.uk
London, EC1Y 1AA www.ncepod.org.uk