State of Nation Report (August 2020)

This report, published in collaboration with University of Derby is the culmination of over a years’ work exploring NHS care pathways for people affected by genetic haemochromatosis, across the UK.

It makes for challenging reading for anyone affected by genetic haemochromatosis, policy makers and clinicians.

Genetic haemochromatosis is the UK’s most common genetic condition, directly affecting over 380,000 people. Although it is commonplace, the condition is significantly under-diagnosed in the UK. Our report demonstrates that the NHS is aware of fewer than 20,000 people with genetic haemochromatosis.

Shockingly, fewer than half[i] of NHS hospital trusts use a recognised care pathway for caring for people with genetic haemochromatosis.

Worryingly, the majority of NHS hospital trusts[ii] do not employ a recognised venesection protocol for treating people with genetic haemochromatosis. The high frequency of venesection in genetic haemochromatosis treatment represents a particular risk to patient safety in the early stages of treatment, especially where healthcare practitioners are poorly trained or unfamiliar with best practice guidance when undertaking the procedure.

Over 40 pages of insight, recommendations and calls to action for the NHS, patients and policy makers.

[i] 46% of respondents do not use a recognised care pathway. Source : State of Nation (2020), Haemochromatosis UK

[ii] 54% of respondents do not use a recognised protocol for venesection treatment. Source : State of Nation (2020), Haemochromatosis UK