Responsibility for the care of patients receiving Eculizumab / Ravulizumab is shared between the National aHUS service and the clinical team at referring hospitals in England. The responsibilities of each are outlined in the shared care protocol.
Responsibilities of the National aHUS service:
1. Consider all patients referred with a thrombotic microangiopathy and possible diagnosis of atypical Haemolytic Uraemic Syndrome (aHUS) and provide a clinical opinion on diagnosis and treatment.
2. Authorise the initiation of treatment with Eculizumab or Ravulizumab for patients with a likely diagnosis of aHUS who may benefit from treatment and who meet NHS England eligibility.
3. Inform NHS England that treatment has been recommended for a patient.
4. Perform and review genetic testing for causes of aHUS and report the results to the referring Consultant.
5. Provide the patient with information about aHUS and treatment with Eculizumab or Ravulizumab.
6. Initiate shared care with the referring consultant and other clinicians involved in the patient’s care according to this agreement.
7. Review the progress of patients referred to the National aHUS Service. For patients not treated, further progress review will cease upon mutual agreement between the National aHUS Service and the referring consultant.
8. Discuss with the patient, when indicated, the possibility of switching treatment from Eculizumab to Ravulizumab or stopping treatment
9. Offer the patient the opportunity for appointments with a consultant from the National aHUS Service (either face to face or remotely). When appropriate, offer appointments to family members for genetic counselling and provide educational material to family members.
10. Maintain written communication with the referring Consultant and patient’s General Practitioner following all appointments.
11. The Specialist aHUS nurses will be in regular contact with the patient following initiation of treatment and will have regular clinic appointments with them.
12. Provide ongoing advice and information to the referring consultant and patient’s General Practitioner as required.
13. The Specialist nurses will lead on monitoring meningococcal vaccination and antibody titres. They will share results with primary care and local consultant and arrange booster vaccinations when appropriate. When indicated they will monitor anti-factor H autoantibodies and share this information with the referring team.
14. Provide support and education for healthcare professionals involved in administering Eculizumab and Ravulizumab and all other aspects of the care of patients with aHUS.