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 region. This HCC will largely duplicate the South Thames Sickle Cell and Thalassaemia Network (STSTN), with some slight geographical changes. Most notably, St George’s Hospital, which was part of the STSTN will now host the HCC for its own network. We expect that the STSTN (now known as SELSEHCC) will largely continue to function as before although we now have funding for another network manager, a data manager and time to facilitate the organisation of educational events for patients, nurses, doctors and other health care professionals. It should also be possible to offer more support to hospitals in the network, with the network and data managers visiting hospitals across the region regularly, to help with data collection and entry, particularly on to the National Haemoglobinopathy Registry. The exact details are not clear yet, but ultimately it should lead to better patient care. We plan to call our HCC the South East London and South East Haemoglobinopathies Co-ordinating Centre.

A National Haemoglobinopathy Panel (NHP) was also created, to provide expert, multidisciplinary advice on difficult decisions about the management of patients with sickle cell disease, thalassaemia and some other rare anaemias. KCH, GSTT and the Evelina were also appointed to jointly host this panel, which will work closely with the SELSEHCC and other HCCs across England.