Specialised blood disorders

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.

Scope

This clinical reference group covers:

  • Haemophilia, adults and children
  • Thrombotic thrombocytopenic purpura (TTP)
  • Other inherited and acquired bleeding disorders.

Membership

  • 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)
  • Additional members TBC

Products

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

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:

Policies

Commissioned

Get involved

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: england.npoc-bloodandinfection@nhs.net