Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what progress he has made on establishing functioning multi-disciplinary networks to ensure best practice is followed in the treatment and care of haemophilia.

It is crucial we protect the safety of haemophilia care, and the Government is committed to implementing recommendation 9 of the 2024 Infected Blood Inquiry report.

The Government is committed to improving the lives of those living with rare diseases, such as haemophilia. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community: these include getting a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance these priorities.

In relation to recommendation 9, a to c, of the Infected Blood Inquiry, peer review of United Kingdom comprehensive care centres has been an essential part of haemophilia services for many years. The triennial audit was replaced in 2019 with a more formal peer review process on a five-year cycle.

The final peer review report is expected to be published imminently and once published, it will be shared with the NHS England Specialised Commissioning Quality Oversight Group for consideration and action. This will be supported by a letter to integrated care boards and trust boards, emphasising the valuable role of peer review and asking for confirmation of their commitment to review and implement the peer review findings.

The Haemophilia Service Specification has been updated by the Blood Disorders Clinical Reference Group and is making its way through final approvals, having undergone public consultation. The new specification includes a contractual requirement for providers to participate in and act upon peer review findings.

Regarding 9d, the Clinical Community and the NHS England Clinical Reference Group for Blood Disorders supports the need to develop and strengthen multi-disciplinary networks. NHS England has drafted a proposed National Clinical Network Specification specifically for these networks, which is dependent on additional funding, and which would embed key new requirements for providers to participate in a networked model of care.

In response to 9e, all diseases or conditions where a non-plasma treatment exists to replace a plasma/blood-derived treatment are now addressed by commissioning policies or funding agreements. There are some specific regimens which are subject to ongoing clinical policy development but in each case there are alternative regimens or treatment approaches which negate the use of plasma-derived medicines.

Of particular interest to the clinical and patient community is the development of a clinical commissioning policy for recombinant Von Willebrand factor, which is currently licensed for prophylaxis in adults, as regular treatment for those with the severest bleeding, but which is not currently commissioned for this indication. Funding will be required to implement this clinical policy for all ages, and this has not yet been identified.

Finally, for 9f, NHS England currently provides ‘central’ funding of approximately 40% of the total annual cost for running the National Haemophilia Database. A task and finish group relating to the database has been established, reporting into the overarching recommendation 9 expert group.

As of February 2026, stakeholders involved in the recommendation 9f working group are in agreement that the registry has been and remains immensely valuable in supporting the provision of clinical care. NHS England continues to work with the United Kingdom Haemophilia Centres Doctors' Organisation to understand the requirement for increased funding.

Further progress on implementing recommendation 9 is subject to additional funding, and this has not yet been identified. NHS England and the Department will continue to work together to provide progress updates on the Government Reporting Integration Platform.