NHS England has established 10 Haemoglobinopathy Coordinating Centres (HCCs) across England to form networks of care to ensure that every child and adult with a Haemoglobinopathy has access to expert clinical management. These HCCs are responsible for ensuring that all patients in the network have annual reviews of care, that Transcranial Doppler scans are performed and interpreted appropriately, and that expert acute medical care is available locally. The creation of HCCs should standardise care across the country and allow collection of data to ensure that this is happening.

King’s College, Guy’s and St Thomas’ and the Evelina Children’s Hospitals successfully applied to host the HCC for our South East London and South East (SELSE) region. SELSE boundaries changed in 2019 to no longer include St George’s Hospital, which was part of the STSTN but now hosts the HCC for the South West.  The core team at SELSE now includes Network Management, Clinical Fellows, Nurse Education & Data and admin support. The team is currently recruiting to increase capacity for Nurse Education and Data Management which will enable the team to facilitate the organisation of more educational events for patients, nurses, doctors and other health care professionals and offer increased support to the wider network data provision, particularly on to the National Haemoglobinopathy Registry.