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Bevan Exemplar Cohort 8 Projects

Enabling Patients in Wales with Haemochromatosis to Donate Blood

Elisabeth Davies

Velindre NHS Trust


Genetic Haemochromatosis (GH) is the most common genetic condition in Wales, and approximately 40,000 of the Welsh population are at risk of having the disorder. If left untreated, this condition can lead to accumulation of iron in the body with potential organ damage. However, treatment for these patients is simple and includes regular venesection (removal of approximately one pint of blood). Currently, the majority of GH patients in Wales are treated at their local hospital, where units of blood are disposed of, but this blood could be utilised by the Welsh Blood Service (WBS) for patients requiring a transfusion.

In order to offer an accessible and equitable service to patients with GH, there is an unmet need to standardise and optimise referral pathways to WBS and to ensure blood donation clinics are located appropriately. This aligns with the strategic objectives of the Blood Health Plan for Wales – to improve general blood health.

In light of on-going national blood stock shortages, and in line with prudent healthcare, WBS seek to recruit and retain GH donors. This is mutually beneficial to WBS, offering resilience to the blood supply chain, hospital benefits via reduction in finance and time of patient attendance at clinic outpatients, and a sense of altruism for the GH donor.

Key objectives:

To reduce waste in healthcare and prevent illness in GH patients, and this project aims to:

  • Enable recruitment and optimise retention of GH donors, where clinically appropriate.
  • Generate data to support monitoring of progress and processes as identified by Key Performance Indicators (KPIs).
  • Produce clearly defined pathways and supporting information for hospital and WBS staff to appropriately manage GH donors.
  • Engage with patient and public in order to improve the service we offer.