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.
Lead Commissioner: Will Horsley
Chair: Dr John Hanley
John Pasi, Clinical Member
Charles Hay, Clinical Member
Tina Dutt, Clinical Member
Sarah Mangles, Clinical Member
Susie Shapiro, Clinical Member
Emily Symington, Clinical Member
Charles Percy, Clinical Member
Cathy Harrison, Haemophilia & Thrombosis Centre
Ri Liesner, Haemophilia Centre,
Anna Wells, Haemophilia, Haemostasis & Thrombosis Centre
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 from 1 April 2019)
- Emicizumab as prophylaxis in people with congenital haemophilia A with factor VIII inhibitors
- Emicizumab as prophylaxis in people with severe congenital haemophilia A without factor VIII inhibitors (all ages)
- 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)