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Familial Hypercholesterolaemia: London Paediatric Services Needs Assessment (September 2021)

The vast majority of individuals with FH in the UK are currently undiagnosed and unaware they have the condition. Concerted efforts are underway to address this within the NHS Long Term Plan, to help improve the cardiovascular health outcomes for those with FH, by increasing the level of FH cases detected to 25% within the next 5 years.

There is currently crucial  information gaps regarding the proportion of children and young people with FH that are accessing services, as well as the needs of this group, and the models of care being delivered by the different services. To address this, a needs assessment has been carried out during autumn 2019 - spring 2021 examining paediatric FH provision in the Greater London area (within the M25), an area which contains ~8 million people. Based on a prevalence of FH of 1 in 250, and with current population estimates, it is predicted there are approximately 8,500 young people aged from 0-18 years with FH living in London.  The work was led by Mandy Harling from Public Health England and carried out in partnership with the Pan-London FH Steering Group Directed by Professor Steve Humphries, and with input from Dr Uma Ramaswami of the UK FH Paediatric Register and HEART UK. The key findings of the work are that:

  • London currently has 14 paediatric FH services, 13 of which are NHS led.
  • These services are providing care for ~562 children and young people. This means that approximately 7% of London's estimated children and young people with FH are currently known to services.
  • Taking this as a baseline, the NHS Long Term Plan ambition to identify 25% of cases by 2023 would result in a three-fold increase in demand for paediatric FH services within the M25.
  • Less than half of participating clinics (40%) were paediatrician led, with the remainder under lipidologist or metabolic clinical leadership.
  • Over 80% of services reported considering the use of a statin by the age of 10 years, to help lower lipid levels.
  • 100% of services provided a structured annual review for children under their care.
  • Less than half of London paediatric FH services (44%) currently provide transition support to children and young people within their care.

Overall the findings are encouraging in that all centres are delivering a quality service in line with NICE FH guidelines. However the work has identified a considerable level of unmet need within the Greater London area, which is likely to become greater over the next 5 years as more children are identified through cascade testing and when Child-Parent Screening via cholesterol measures taken at 12 months starts to roll out.  The survey has identified different child-focussed models of care that can be used to inform the commissioning of future service provision. In particular, there is unmet current need that will certainly require an increase in service provision.

While this survey has only looked at paediatric FH provision in the London region we believe the findings of unmet current and future need are likely to be similar throughout the UK. We would be happy to help other Health Care Professionals in carrying out a similar survey in their regions.

Steve Humphries, Uma Ramaswami and Mandy Harling.

Download the full report

For any queries any relating to this work, please contact: england.cardiac-strokecnldn@nhs.net