Our latest report, reveals inconsistent adoption of NHS care protocols for genetic haemochromatosis. This detailed investigation covers all NHS trusts across the UK and was produced in collaboration with the University of Derby. It has taken over 12 months to research and publish.

Key findings :

  • fewer than half of NHS hospital trusts use a recognised care pathway for caring for people with genetic haemochromatosis.
  • the majority of NHS hospital trusts do not employ a recognised venesection protocol for treating people with the condition

We are calling on the Department of Health to :

  • ensure NHS secondary care establish clinical best practice guidelines in the diagnosis and treatment of people with genetic haemochromatosis;
  • engage with the NHS to ensure it takes steps to ascertain who is at risk of genetic haemochromatosis and to ensure their timely care
  • ensure all patient referrals for genetic haemochromatosis are completed within 18 weeks

The All-Party Parliamentary Group on GH has reviewed and discussed the findings. 

We encourage you to write to your MP (and other elected representatives) to press for change. 

Printed copies of the report have been circulated to all our Friends Against Iron Overload, MPs and policymakers. The report is also available for free download or you can buy the printed edition in our online shop. 

This report was made possible by the generous support of the Shears Foundation and Ground Construction Limited. In common with organisations across the third sector, Covid-19 has presented unique challenges to our charity – a massive upswing in demand for our support coupled with a significant fall in community fundraising income. So, at this time, we are especially grateful to these, our long-standing supporters who continue to share our vision of a world where everyone affected by genetic haemochromatosis has access to high-quality care and the support - and the information and resources necessary to improve their quality of life.