Haemochromatosis UK is very pleased to see that a recent paper by Professor Edward Fitzsimons et al has been adopted by The British Society for Haematology and forms their updated guidelines for diagnosis and treatment of genetic haemochromatosis.
In particular, this patient organisation is pleased with the set of 11 recommendations emerging from the paper which will go a long way to addressing many of the concerns raised by patient over recent years.
David Head, Chief executive at Haemochromatosis UK, said “There have been uncertainties and inconsistencies for years, with various consultants using guidelines from different countries or simply basing their practice on years of ‘that’s how it’s always beeon done’. I’m delighted that the BSH have provided clear direction over a number of issues, notably family screening and venesection targets. We are particularly pleased to see firm recommendations as to the use of transferrin saturation as a marker for GH, and as a monitor in treatment.”
The guidelines contain a set of 11 recommendations and are freely available at the BSH website and patients with concerns about how they are being monitored and treated can print them to discuss with their consultant.
The recommendations and a link to the British Society for Haematology papers is on our website at http://haemochromatosis.org.uk/haemochromatosis/clinical-guidelines/
The recommendations include guidance on population screening, referral to hepatology, liver biopsy, diagnostic testing, genetic testing, family screening, venesection objectives (targets for serum ferritin and transferrin saturation), and the use of the NHS blood donation service. (more below … )
“We are also particularly pleased to see reference to what we have referred to in the past as the ’50/50′ rule in maintenance”, said David, “keeping serum ferritin (SF) below 50 microgrammes and transferrin saturation (TSat) below 50% was advocated at our conference for medical professionals in 2017 by a consensus of respected scientists and it is good to see it filtering through to our national guidelines.”
Recommendation 10: During maintenance, venesect as required, preferably at a blood donation centre to maintain normal FBC, SF <50 microgrammes and Tsat <50% (new British Society for Haematology guidelines, May 2018)
For more information and a link to the British Society for Haematology papers please visit http://haemochromatosis.org.uk/haemochromatosis/clinical-guidelines/