Have your say on bleeding disorder care

Written by Jessica Bomford, May 22, 2025

Have your say on new guidelines which set the standards of care for all haemophilia centres in England.

NHS England wants your feedback on its revised service specification for the treatment of people with bleeding disorders.

Developed by specialised clinicians, commissioners, patients and public health representatives, the guidelines are an important definition of what’s expected of every haemophilia centre in England. The Haemophilia Society has also worked with NHS England to ensure the needs of the bleeding disorders community are fully represented. The previous specification was designed 13 years ago and does not reflect some important new treatments and other clinical changes in the intervening period.

The document covers care for everyone with a genetic or acquired bleeding disorder, including haemophilia, von Willebrand disorder, platelet function disorders, other rare inherited bleeding disorders and bleeding disorders of unknown cause.

You need to fill out a short survey after reading the guidelines. You’ll find both here. The deadline for submitting your views is 19 June 2025.

This is a chance to influence the standards of care that NHS England expects of the centres it funds. Once finalised, the guidelines will also be an important tool for people with bleeding disorders in understanding what services should be offered, including physiotherapy and psychological support.

The service specification deals with a wide range of topics, including:

  • How often people with bleeding disorders should be seen by a clinician, dependant on their condition
  • Defining essential staff groups, including administrators and biomedical scientists as well as specialist clinicians
  • Requirements for data reporting
  • Essential equipment that centres should use
  • Definition of what laboratory services should be offered by Comprehensive Care Centres.

The main updates to the document since the last one was written in 2012-13 are:

  • More options on how care is delivered, taking into account trends towards more ‘remote’ appointments
  • Increased recognition of the needs of women and girls with a bleeding disorder
  • Greater emphasis on non-medical interventions such as social support, physiotherapy and psychology support
  • More coordination between Comprehensive Care Centres and other services to support more localised care
  • Including updated professional guidance and policies from key health bodies.

Kate Burt, Chief Executive of the Haemophilia Society, said: ‘I encourage anyone with a bleeding disorder and their families to look at the new service specification to make sure your needs are considered. This is an important opportunity to influence the way you are clinically supported and to make sure that every centre in England offers a baseline of excellent care.’

This service specification doesn’t apply to Wales, Scotland and NI, although the standards should be very similar. There is also a ‘peer review’ audit of all centres in the UK which is due to be published shortly that focuses on a wide range of service provision and quality of care in every haemophilia centre.

The service specification forms part of the contract between NHS England and any NHS trusts contracted to provide specialised bleeding disorders services. This will be all Comprehensive Care Centres – larger centres which offer a range of specialist services –  and some Haemophilia Treatment Centres, which are smaller.  Outcomes are measured through an agreed set of key performance indicators.