State of The Nation 2020

Our State of the Nation report illustrates current clinical practice regarding the care of people with genetic haemochromatosis (GH), across the United Kingdom.

In July 2019, Haemochromatosis UK initiated a survey (under the Freedom of Information Act) of 176[1] NHS acute/secondary care trusts and health boards in England, Wales, Scotland & Northern Ireland.

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This survey attempts to better understand current clinical practice regarding the care of people with genetic haemochromatosis (GH), across the United Kingdom.

It follows earlier surveys undertaken in 2016 and 2018, which illustrate trends in genetic haemochromatosis clinical practice over the past 4 years.

This report was co-authored by :

Gerri Mortimore RGN; NMP, Practice Teacher; MSc Advanced Practice; BA (Hons) Health Studies, PgCert (IPPE). Fellow HEA and Postgraduate Lecturer in Advanced Clinical Practice, University of Derby
Neil McClements; Chief Executive of Haemochromatosis UK

The authors wish to thank Sam Hobbs, Education Programme Manager, Haemochromatosis UK for her contribution to the statistical analysis of the underlying dataset.

The authors gratefully acknowledge the support of the University of Derby, the Shears Trust, Friends Against Iron Overload and Ground Construction Limited in funding this report.

[1] In 2019, there were 223 NHS trusts (source : https://improvement.nhs.uk/resources/single-oversight-framework-segmentation/). This study focussed on those trusts that are commissioned to provide care to people with GH, excluding mental health & ambulance trusts.

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