Improving care and outcomes for HLH patients

The UCLH HLH team recently led a national forum focusing on establishing local and regional teams for the care of patients with this life-threatening and under-diagnosed condition. 

The event, funded by UCLH Charity, was the first of its kind, and brought together over 30 clinicians from across the UK. 

Haemophagocytic Lymphohistiocytosis (HLH) is a severe, life-threatening syndrome caused by an overactive immune system that attacks the body's own tissues, leading to extreme inflammation, organ damage, and multi-organ failure. It is difficult to diagnosis due to it mimicking other conditions such as sepsis. It’s many varied symptoms often means it falls between specialties. Without swift diagnosis and correct treatment, HLH can be catastrophic with national mortality of about 50%. 

The HLH service is led by Dr Jessica Manson, and provides high quality multi-disciplinary care. The UCLH MDT consists of clinicians from rheumatology, haematology, infectious diseases, virology, neurology and critical care. The team also provides an advisory service for patients outside of UCLH and is leading the way in research into HLH.

Given that many other NHS trusts do not have such services dedicated to HLH, the forum aimed to bring together specialists from across the UK to raise awareness and share best practice for optimal cross-speciality diagnosis and management.  The event also featured discussions on the current status of HLH (the incidence is growing), and advice for setting up a service.

Dr Jessica Manson said: “The impact of this conference cannot be understated... the funding from UCLH Charity has enabled us to bring together, for the first time ever, a range of professionals who are determined to change the face of HLH care across the UK. I am so excited about the next steps that this forum will lead to. Thank you to everyone who made this possible!” 

Dr Katie Smith, Haematology Consultant and Clinical Director, Pathology, Hampshire Hospitals NHS Foundation Trust said: "Inspired by the recent fabulous HLH meeting I have rallied a group of like minded in clinicians to formalise a more local HLH MDT and roll out some pathology and IT support work streams."