This Clinical Reference Group (CRG) covers haemophilia and other bleeding disorder services. Bleeding disorders are medical conditions in which the blood fails to clot properly. These conditions are rare in the general population, affecting around 24,000 people in the UK. Most are genetically inherited. They include Haemophilia A and B (classified as mild, moderate or severe), Von Willebrand disease and platelet disorders. Bleeding disorders are treated by replacing the missing clotting factor.
Specialist services for haemophilia and other related bleeding disorders include all care provided by Specialist Haemophilia Centres including inpatient care where the cause of admission is related to a bleeding disorder. The service includes outreach when delivered as part of a provider network. This applies to provision in adults and children.
Chair: Dr Gerard Dolan, Consultant Haematologist, Guy’s and St Thomas’ NHS Trust.
Charles Hay, North
John Hanley, North
Will Lester, Midlands & East
Emily Symington, Midlands & East
Ri Liesner, London
John Pasi, London
Nicola Curry, South
Sarah Mangles, South
Giles Ratcliffe, PHE Lead
Matthew Gregory, Patient & Public Voice
Liz Carroll, Patient & Public Voice
Jamie O’Hara, Patient & Public Voice
William Horsley, 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:
A commissioning policy is a document that defines access to a service for a particular group of patients. A NICE Technology Appraisal Guideline on the same topic will replace, or be incorporated into, a commissioning policy as appropriate. These are important documents that are developed to ensure consistency in access to treatments nationwide.
The following policies fall within the scope of this CRG:
- Susoctocog alfa for acquired haemophilia A
- Human coagulation factor X for hereditary factor X deficiency (all ages) (effective until 31 March 2019)
- Human coagulation factor X for hereditary factor X deficiency (all ages) (effective from 1 April 2019)
- Emicizumab as prophylaxis in people with congenital haemophilia A with factor VIII inhibitors
- The use of Rituximab as a second line agent for the eradication of inhibitors in patients with Acquired Haemophilia
- Immune Tolerance Induction (ITI) for haemophilia A (all ages)