The need for a funded, national hlh service: a scoping survey assessing the provision of specialist hlh services across the uk

Abstract Background/Aims Haemophagocytic lymphocytosis (HLH) is a multi-system hyperinflammatory syndrome with high mortality. Early treatment and multi-disciplinary team (MDT) management improves outcomes. In 2021, NHS England released guidelines for HLH treatment with anakinra; these mandate MDT discussion prior to treatment. HLH is rare and expertise varies throughout the UK, causing potential inequality in access to care. This scoping study aimed to assess HLH service provision across the UK. Methods An online survey was designed and disseminated via professional networks, including Hyperinflammation and HLH across specialty collaboration (HiHASC) members (www.hihasc.org) and contacts at individual hospitals. Quantitative data were analysed using SurveyMonkeyTM analysis. The survey was created to inform national service development, response was voluntary and data have been anonymized. Results 93 survey responses were obtained from 80 healthcare trusts, including three in Scotland and two in Wales. Responses covered 39/42 integrated care boards (ICBs) in England, representing all 7 clinical commissioning regions. Respondent’s specialties included Rheumatology, Haematology, Paediatrics, and Intensive Care. In 33% (13/39) of ICBs, Scotland and Wales no formal HLH provision existed; management relied on individual practice or informal discussions. 36% (14/39) of ICBs utilised ad hoc MDTs to manage HLH. Formal provision of HLH MDTs existed in 31% (12/39) of ICBs although these did not cover all trusts in the ICB. Only one MDT had a paid administrator.20% (n = 16) of trusts had an agreed HLH guideline; 7 were developed locally and 9 utilised external guidelines. Anakinra had been prescribed for HLH in 31% of trusts since 2021. Prescribing requirements were satisfied via ad hoc discussions in 33% of trusts, local Haematology or Rheumatology MDTs in 24% of trusts, and involvement of tertiary centres in 7% of trusts. A further 25% of trusts used a single HLH MDT for anakinra discussions. Only 10% (n = 8) of consultants had HLH included in job plans. A further 36% (n = 29) wanted this. 96% (n = 69) of respondents would value a national or regional HLH MDT. 20% (n = 14) of respondents offered to lead an MDT, with a further 53% (n = 37) willing to offer expertise. The most frequently proposed model for this MDT was a regular, online meeting with advance referrals. The largest barrier to MDT participation was lack of time. Other barriers included limited exposure to HLH and lack of funding or paid administrative support. Conclusion Specialist HLH services are inconsistently provided throughout the UK, suggesting inequitable access to care. Many ICBs rely on ad hoc HLH provision or have no formal HLH service. In areas providing HLH MDT services, these are often outside of job plans and lack administrative support. There is unsustainable reliance on a single centre. Strong support exists for national or regional HLH MDTs, which will require funding. Disclosure M.F. Cox: None. J.J. Manson: None. R.S. Tattersall: None.