What is it?

Genetic haemochromatosis (GH) is one of the most common genetic disorders, affecting around 1 in 200 people in the UK. It causes iron levels to build up in the blood over time, which can damage organs and joints in the body if left untreated.

The main and conventional treatment for GH involves the removal of excess iron stores by the regular removal of blood (venesection).

The Red Book (Guidelines for the Blood Transfusion Services in the UK, issued by JPAC) states the following:

Blood from individuals with genetic haemochromatosis (GH) who have no symptoms arising from their GH is intrinsically safe for transfusion. However, before patients with GH who require continued venesection for the maintenance of their health are accepted as blood donors, the consultant with responsibility for donors must ensure that the following criteria are met.

  • The selection criteria/methods for all donors with GH preserve the principles of altruism.
  • Blood donated for therapeutic use by any donor known to have GH meets all other criteria (except donation frequency) in the JPAC Donor Selection Guidelines. If it is clinically necessary for individuals to donate more frequently than the minimum donation interval, specific permission must be obtained from the designated clinical support officer.
  • The donor is under the continuing care of a physician who is able to offer alternative venesection facilities whenever, for any reason, the donor does not meet all other criteria in the JPAC Donor Selection Guidelines.

Patients with GH must be referred by their specialist (no direct referrals from Primary Care) in order to become a donor with NIBTS. This applies to patients in both de-ironing and maintenance phases. If accepted for donation, NIBTS will contact you (the patient) directly to arrange an appointment.

Please note all GH donors remain under the care of their referring Consultant, for monitoring of the condition and the determination of the frequency of venesection. NIBTS is unable to monitor iron levels or provide any patient management.

Patient Information Leaflet

Haemochromatosis referral form

This referral form should only be completed by a Hospital Consultant on behalf of a Haemochromatosis patient.