This Lead and Inform 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.
This clinical reference group covers:
- Haemophilia, adults and children
- Thrombotic thrombocytopenic purpura (TTP)
- Other inherited and acquired bleeding disorders.
- Dr Susie Shapiro, National Speciality Adviser, and CRG Chair
- Will Horsley, Lead Commissioner and Pharmacist
- Charles Percy, Clinical Member
- Kate Talks, Clinical Member
- John Grainger, Clinical Member
- Sarah Mangles, Clinical Member
- Charles Hay, Affiliate Member, National Haemophilia Database (Director)
- Pratima Chowdary, Affiliate Member, UK Haemophilia Centres Doctor’s Organisation (Chair)
- Julia Spires, Affiliate Member, Paediatrics; Haemophilia Nurses Assoc. (Chair)
- David Hopper, Affiliate Member, Haemophilia Chartered Physiotherapists Assoc. (Chair)
- Debra Morgan, Patient & Public Voice
- Laurence Woollard, Patient & Public Voice
A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by commissioners 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:
- 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)
- Human coagulation factor X for hereditary factor X deficiency (all ages)(effective from April 2020)
- Immune Tolerance Induction (ITI) for haemophilia A (all ages)
- Obinutuzumab elective therapy to prevent immune Thrombotic Thrombocytopenic Purpura (TTP) relapse in patients who are refractory or intolerant to rituximab (adults)
- Rituximab for the treatment in acute Thrombotic Thrombocytopenic Purpura (TTP) and elective therapy to prevent TTP relapse
- Susoctocog alfa for acquired haemophilia A
- The use of Rituximab as a second line agent for the eradication of inhibitors in patients with Acquired Haemophilia
- Vonicog alfa for the treatment and prevention of bleeding in adults with von Willebrand disease
If you are interested in the work of the specialised blood disorders CRG or its NPOC, you can register as stakeholder.
For details on our latest consultations please visit the NHS England consultation hub.
Get in contact
For any questions or queries relating to the work of the CRG or its NPoC, please contact: firstname.lastname@example.org