Introduction Hereditary haemochromatosis (HH) is a genetic disease characterised by excessive intestinal absorption of dietary iron, with a prevalence in the UK of 1 in 200. This results in a pathological accumulation of iron in organs such as the liver. Lifelong regular venesection remains the mainstay of treatment to achieve ferritin levels of <50μg/L. European Association for the Study of the Liver (EASL) guidelines state that blood from stable, uncomplicated HH patients who fulfil blood donor selection criteria should be made available to blood transfusion services. Statistics from the NHS blood and transplant service (NHSBT) show a 40% drop in new blood donors this decade. Given the increasing donor shortage, utilising otherwise discarded blood from eligible HH patients would aid in easing the national crisis. This survey aims to understand the barriers to eligible HH patients becoming blood donors.
Methods We identified all HH patients receiving regular venesections between May 2014-May 2015, at the nurse-led unit within Surrey and Sussex Healthcare NHS Trust. A random sample of patients potentially suitable for referral to NHSBT based on age (17–65 years) and stable ferritin (<200μg/L for 6 months) were interviewed by telephone.
Results 112 HH patients were venesected regularly (>2 occasions) over this period. 40% (45/112) had ferritin levels consistently <200μg/L. Of these stable patients, 75% (34/45) were identified as potential blood donors based on age criteria. 16 out of 34 (47%) patients were interviewed. There were no blood donors within the sampled cohort. Only 50% (8/16) were aware they could potentially make regular blood donations (subject to donor selection criteria) as part of their venesection programme. Within this group, a specialist was responsible for informing the patient in only 62.5% (5/8) of cases. Of note, 37.5% (6/16) of patients interviewed had less than yearly specialist clinic follow up. Encouragingly, 81% (13/16) of patients were interested in becoming blood donors.
Conclusion This survey identified a substantial proportion (30% = 34/112) of HH patients within our cohort who are missed potential blood donors. This is due to a lack of patient education and awareness of referral procedures on the part of the medical team. The specialist team should facilitate blood donations by referring eligible patients to the NHSBT, providing a clear venesection plan and monitoring schedule. Regular specialist follow up is key to ensuring compliance with treatment and achieving therapeutic targets. We have introduced local protocols for HH patients and increased educational resources for both patients and clinicians. Such measures applied nationally will optimise HH management and increase the utilisation of an otherwise wasted resource.
Disclosure of Interest None Declared