Overview

This is a revised specification for specialist services for haemophilia and related bleeding disorders (adults and children). The revisions constitute an update to the previous specification which was prepared in 2012/13. Since 2012 there have been several advances in treatment which have enabled clinical teams to focus less on the bleeding and more on other aspects of healthcare and wellbeing for the affected service users. This revised specification reflects these changes.

Specialised bleeding disorders are exemplified by haemophilia and include other inherited disorders such as Von Willebrand disease and rarer disorders, as well as some acquired bleeding disorders usually caused by an immune response. All are characterised by an increased tendency to bleed excessively resulting in life-threatening episodes, or cumulative morbidity.

With advances in treatment over the preceding decade there is now an increasing focus on the non-bleeding aspects of inherited bleeding disorders such as psychology, physiotherapy, and social impacts.

Acute bleeding episodes, especially in the acquired setting, may present anywhere at any time and can be life-threatening. These require rapid identification and treatment, and patients will be transferred to a comprehensive service once stabilised.

Patients with a severe inherited disorder will usually be offered regular prophylaxis treatment and will be trained in self-management. One of the key complications of poorly controlled bleeding, especially small sub-clinical bleeds, is that joint damage can accumulate. Consequently, physiotherapy advice and care is an essential component for most patients.

The new specification acknowledges a decreased reliance on face-to-face or in-person consultations, and details how services available to patients/service users can be expanded, especially in respect of psychological support. These will be subtle changes for most service users.

To support the longer-term management of life-long conditions, and rapid interventions for acute bleeding episodes, each comprehensive service is now required to provide and support a network for all providers in its catchment.

Key revisions to the Haemophilia service specification

• Greater emphasis on non-medical interventions:
  • psychology support
  • physiotherapy
  • social care.
• More options on how care is delivered with less reliance on in-person consultations, and flexible intervals.
• Recognition of specific needs in certain patient groups, eg women and girls.
• Requirement for networks to be led by individual comprehensive services, supporting patients with more localised care and defined access pathways.
• Updating in line with latest professional guidelines, National Institute for Health and Care Excellence and NHS England policies to enable the specification to keep pace with the ongoing transformation of treatment and care of patients and service users.

This revised service specification is expected to ensure that the national haemophilia service is set up to meet the needs of all eligible patients in the coming years.