11 August 2024
New resources
to support more clinicians to recognise the rare and devastating condition HLH
have been developed by the Getting It Right First Time (GIRFT) team, in
association with BSR and patient support
group Histio UK.
GIRFT led a
collaborative, cross-specialty group of clinicians towards the first consensus
pathway for the little-known haemophagocytic lymphohistiocytosis (HLH), to raise awareness among acute care providers so that HLH is
considered more often as a diagnosis. If diagnosed, the pathway and its
accompanying guidance can steer clinical teams through the patient’s
treatment and onward support.
The resources
showcase consensus recommendations for care across the patient pathway and best practice case studies from teams who have significantly reduced their
mortality rates.
Read and download the pathway for HLH
Read and down the guidance for guidance for the diagnosis, treatment, management and governance for HLH
While GIRFT’s
work has been led by rheumatologists, the pathway, guidance and webinar are
equally relevant for colleagues in emergency medicine, haematology, general
medicine, infectious diseases, critical care, paediatrics, immunology, rare
diseases, obstetrics and pharmacy, as well as operational colleagues and
commissioners.
Peter Lanyon,
GIRFT’s joint clinical lead for rheumatology was among the lead authors of the
pathway and guidance, along with Jessica Manson (consultant rheumatologist at
University College London), Rachel Tattersall (adolescent and adult
rheumatology consultant at Sheffield Teaching Hospitals and Sheffield
Children’s) and Lesley Kay (GIRFT’s joint clinical lead and NHS England
national clinical director for MSK).
Peter said:
“Patients can present with HLH in any part of acute medicine, so increasing
awareness across the system can mean earlier recognition and treatment and
potentially more lives saved.
“We hope these
resources will start a national clinical conversation about HLH among all
providers of acute care, so that the syndrome is considered - and hopefully
ruled out - as soon as possible.”
Join the
webinar to
coincide with Histiocytosis Awareness Month (September), GIRFT is holding a
webinar to discuss and consider any questions on the guidance.
Working
together to improve care and outcomes for people with suspected haemophagocytic
lymphohistiocytosis (HLH) takes place on Thursday 26th September from
12.30pm to 1.30pm.