Over recent months, we're been working with the Scottish National Blood Transfusion Service (SNBTS) to better understand how people in Scotland feel about donation services when they have genetic haemochromatosis. This work builds upon our efforts to improve donor services in England, which has led to the creation of the new GH donor scheme. 

Following an earlier call for feedback from HUK members, we've been able to better understand what's working for people with GH in Scotland - and where there are areas of improvements in donor services.

This work has led to a collaboration with Dr Lorna McLintock, Medical Director of SNBTS and Jennifer Wilson, Head of Donor Marketing to develop a research poster summarising the findings, which was presented at Scotblood's Annual Conference in early June. Our shared research attracted a lot of attention and secured a coveted poster prize in a competition judged by several NHS Scotland clinicians.

Scotblood is the annual scientific conference of the Scottish National Blood Transfusion Service, and 2023 marks the 42nd year of the event. The Conference is an internationally recognised event attracting renowned speakers 

Above : Jennifer Wilson, Head of Donor Marketing, SNBTS with the winning HUK-Scotblood poster

This research revealed a number of common themes, including : 

• A strong desire for patients to see their blood help others - yet over 76% have not registered as a donor
• Some patient confusion over venesection vs donation
• Many people with GH are unaware that they can donate through SNBTS
• Confusion about maximum age to be a GH donor
• Confusion about “maintenance” status to be a GH donor
• The mandatory SNBTS consultant referral was cited by several prospective donors as a disincentive to register
• NHS clinicians also unclear of the current rules; reluctant to refer

This collaboration has provided valuable insights into how accessible giving blood as part of treatment for people with GH. Further research will be planned to explore why such a low number of people who have registered, have not yet donated.

The overall findings will be incorporated into an action plan to drive forward service improvements for GH donors. Key elements of this will include:

• Increasing awareness of blood donation as an option for people with GH in Scotland
• Myth busting with clinical colleagues to refer GH patients to SNBTS
• Further analysis on opportunity to donate, meeting the requirements of GH donors who are recommended to donate every 12 weeks.
• Specific communications campaigns to be developed to encourage registration and donation for people with GH 

Haemochromatosis UK's CEO Neil McClements joined the conference virtually with a brief presentation on the key findings and next steps :

The collaboration between Haemochromotosis UK and SNBTS has been valuable and this partnership will continue.

Download the HUK survey findings

Download the winning research poster