This Clinical Reference Group (CRG) covers Sickle Cell Disease (SCD), Thalassaemia and other very rare anaemias requiring lifelong transfusion and chelation. Haemoglobinopathies are complex disorders which although often grouped together and managed by the same specialist team, have distinct clinical manifestations and treatments. Treatment differs for children, adolescents and adults. SCD predominantly affects black and African-Caribbean people, whilst thalassaemia mainly affects those of Asian and Mediterranean origin. The prevalence varies according to geographical area, being highest in urban ethnic populations.
Specialist haemoglobinopathy services include all care provided by specialist haemoglobinopathy centres including inpatient care where the cause of admission is related to haemoglobinopathy. The service includes outreach when delivered as part of a provider network. This applies to provision in adults and children.
Chair: Dr Kate Ryan, Consultant Haematologist, Central Manchester University Hospitals.
Andrew Will, North
Josh Wright, North
Shivan Pancham, Midlands & East
Sarah Donohue, Midlands & East
Jo Howard, London
Farrukh Shah, London
Wale Atoyebi, South
Simon Cheeseman, Lead Pharmacist
Patrick Ojeer, Patient & Public Voice
Christopher Sotirelis, Patient & Public Voice
Carol Burt, Patient & Public Voice
Claire Foreman, Lead Commissioner, firstname.lastname@example.org
A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the 10 Hub Commissioning Teams to contract services on an annual basis.
Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.
The following service specifications fall within the scope of this CRG: