IBI-9d Response Accepted AI-assessed

Haemophilia Centre Resources

Recommendation

The necessary administrative and clinical resources should be provided by hospital trusts and boards, integrated care boards, and service commissioners to facilitate multi-disciplinary regional networks to discuss policy and practice in haemophilia and other inherited bleeding disorders care, provided they involve patients in their discussions.

Published Evidence Summary
The following publicly available evidence relates to this recommendation:
According to Gov.uk, Full Government Response to the Infected Blood Inquiry, May 2025, the UK Government stated in May 2025 that NHS England had drafted a proposed National Clinical Network Specification for multi-disciplinary regional networks in haemophilia and inherited bleeding disorders care. According to the draft specification, it aims to embed new requirements for providers to participate in a networked model of care.
How was this assessed?
Assessed by gemini-2.5-flash on 19 Mar 2026
Checked data held on this site (government responses, progress updates, independent evidence)
External sources searched: www.gov.uk, www.legislation.gov.uk, hansard.parliament.uk
This recommendation requires implementation across many organisations. The assessment reflects central policy response, not adoption in individual organisations.
Jurisdiction
UK-wide
Response
Accepted
Accepted UK Government
14 May 2025

UK Government

Recommendation 9d: The need to develop and strengthen multi-disciplinary regional networks to discuss policy and practice in haemophilia and other inherited bleeding disorders to improve patient care and support standardisation is supported by the clinical community. NHS England has drafted a proposed National Clinical Network Specification specifically for these networks, which would embed key new requirements for providers to participate in a networked model of care. This would require additional funding to implement, as is the case with other clinical network models, in recognition of the staff time required, and funding has not yet been identified.

Scottish Government

These recommendations have largely been implemented in Scotland.The Scottish Inherited Bleeding Disorders Network is an established managed clinical network which includes staff and patients and helps ensure learning and promotion of good practice across Scottish haemophilia centres in line with recommendation 9d).

Welsh Government

The Welsh Government is currently working with the Haemophilia Centres on their peer review findings to take forward any recommendations and implement changes as necessary.

Northern Ireland Executive

In Northern Ireland, Recommendations 9a) to 9d) are carried out as standard practice. The Belfast Health and Social Care Trust is is commissioned by the Department (through the Strategic Planning and Performance Group) to carry out this work and houses the Haemophilia Comprehensive Care Centre (CCC), which is the only centre in Northern Ireland; there are not any Haemophilia Treatment Centres (HTCs).

There is no Regional Network in Northern Ireland, and this is taken into consideration by Peer Review Teams while Peer Review Audits are carried out within both the Haemophilia Adult and Paediatric Services within the Trust.

Read Full Response
Published Evidence

Published assessments of implementation progress from inspectorates, select committees, official progress reports, and other sources. Check the source type badge to see whether each assessment is independent or government self-reported.

Good Progress
15 Jan 2026
IBCA Community Update Other

As of 13 January 2026: 3,721 people asked to start claims, 3,546 begun process, 3,074 received offers totalling £2.47bn, 2,861 paid totalling £1.89bn. Third compensation regulations in force 31 December 2025.

View detailed findings

IBCA exceeded initial expectations. Three sets of regulations now in force covering infected persons, affected persons, and supplementary routes. £11.8bn committed in October 2024 Budget. Independent review found "very creditable progress."

IBCA Community Update, 15 January 2026 View Source
Source
Report Infected Blood Inquiry Final Report 20 May 2024
Responsible Bodies
UK Government Primary
Recommendation age 1.8 yrs
Last formal update 14 May 2025