PNH National Services

The National PNH Service

The National PNH Service was established in April 2009 following a successful application to the then National Commissioning Group for Highly Specialised Services in England. The Service was established to care for and support patients with PNH from throughout England. There are agreements in place with the Healthcare Commissioners in Scotland, Wales and Northern Ireland for the National PNH Service to provide support to patients with PNH from the rest of the United Kingdom. The PNH Service is now funded by NHS England as a Highly Specialised Service.

The PNH National Service Centres

The PNH National Service consists of two centres in England, with one based at St James’s University Hospital, Leeds and the other in King’s College Hospital, London. The centre in King’s manages patients in London and the Home Counties, and the centre in Leeds manages patients from the rest of the United Kingdom. The two centres work very closely with each other agreeing on patient management plans, including agreed criteria for treatment and with shared multidisciplinary team (MDT) teleconferences every month.

Outreach clinics are undertaken by the Leeds team every 3 months (every 6 weeks in Birmingham) and every 6 months (Oxford and South).

Our aim is to care for and support patients with PNH, providing exceptional service to ensure the highest quality management.

The Service Aims to Review and Manage all Patients with PNH

The Service aims to review and manage all patients with PNH through a shared care agreement with their own local haematology units. The patient remains under the care of their local haematologist and his/her team. The shared care approach ensures local haematologists have regular up-to-date information following clinic visits, as well as a local point of contact for advice and consultation to support patients in between their appointments with the Service. It is important that the Service reviews and monitors not only patients requiring Eculizumab but also all other patients with PNH for potential changes and complications.

We also aim to provide education to patients, their carers and healthcare personnel involved in their care to effectively manage any complications of PNH and its therapy. Therefore, there is an important educational role of the National PNH Service.

To ensure that all patients with PNH have equal access to effective therapy, we have agreed criteria for selecting patients who would benefit from these anti-complement therapies.

This facilitates cost-effective and auditable use.

What does the Service do?

The Service manages the prescriptions, delivery and all aspects of the management of patients on complement inhibition for PNH in England. Local haematologists prescribe for patients in Wales, NI, and Scotland.

Important information regarding PNH treatment guidelines and referrals.

Relevant information about diagnosing, treating and living with PNH.