All Haemophilia Centres should comply to the following accepted national standards:

Data collection

All centres will keep registers of patients under their care.
All centres will submit data on an annual basis to the UKHCDO scheme.

Laboratory

All laboratories will participate in the NEQAS haemostasis scheme, at levels 1 and 2.
All laboratories will possess full accreditation through CPA (UK) Ltd.

Levels of performance by Haemophilia Centres in NEQAS surveys must be available for formal inspection by health authorities and auditors. Persistently poor performance, as defined by NEQAS, must be addressed and rectified as a matter of priority.

Those laboratories participating in genetic analysis must:
have the facilities and expertise to identify haemophilia mutations
have the ability to assign carriership and make antenatal diagnosis
have a turnaround time of six weeks for routine samples and two weeks for urgent ones
participate in appropriate genetics external quality control schemes

 

Clinical

All patients should be treated according to recommendations produced by UKHCDO
Nursing and physiotherapy standards must comply with recommended guidelines laid down by UK RCN HNA and HCPA.

Any centre failing to meet the agreed set of standards on a regular basis will be notified to UKHCDO, the Regional Office and the NHS Trust concerned so that a programme of monitored improvement may be established.

Audit

It is recommended that a process of formal external audit be established for all Haemophilia Centres, administered by UKHCDO and UK RCN HNA, in conjunction with regional haemophilia networks and local patient groups. Centres will then be formally accredited as Comprehensive Care Centres or Haemophilia Centres, provided that they satisfy established criteria.
Comprehensive Care Centres will continue to be audited on a triennial basis by UKHCDO and UK RCN HNA.

All Haemophilia Centres should be audited at least every three years under the auspices of UKHCDO and UK RCN HNA, in association with regional haemophilia networks.

All audits should be carried out according to a national audit framework. A suggested audit template is attached as appendix 4.
The audit should appraise an agreed range of clinical and laboratory activities. Audit topics - and the general form of the audit - should be approved with health authorities and service providers and should also include input from members of the local patient group and other service users.
Results of audits should be open and transparent and made available to relevant stakeholders.