Scope

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.

Membership

• Dr. John Hanley, Chair
• Dr. John Pasi, Clinical Member
• Dr. Charles Hay, Clinical Member
• Dr. Tina Dutt, Clinical Member
• Thuvia Flannery, Clinical Member
• Dr. Sarah Mangles, Clinical Member
• Dr. Susie Shapiro, Clinical Member
• Dr. Emily Symington, Clinical Member
• Dr. Charles Percy, Clinical Member
• Matt Gregory, Patient & Public Voice Representative
• Nicola Sugg, Patient & Public Voice Representative
• Cathy Harrison, Affiliate Member
• Ri Liesner, Affiliate Member
• Anna Wells, Affiliate Member
• William Horsley, Lead Commissioner

Products

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

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:

• Haemophilia (All Ages)

Policies

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 April 2020)
• 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)
• Vonicog alfa for the treatment and prevention of bleeding in adults with von Willebrand disease