UK Paediatric Services for Familial Hypercholesterolaemia Workshop

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The King's Fund

11-13 Cavendish Square

London

W1G 0AN

United Kingdom

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We are delighted to announce the forthcoming British Heart Foundation and HEART UK workshop: UK Paediatric Services for Familial Hypercholesterolaemia at the King’s Fund, London on Wednesday 18 April 2018.

This interactive event aims to advance the ambition for paediatric FH services, set the current scene and explore approaches to overcome the barriers to implementation.

Join an audience of commissioners, STP representatives, metabolic paediatricians and adult lipidologists, as well as attendees from the RCPCH, BIMDG, NHS England and Public Health England.

The workshop will be your opportunity to hear from both renowned healthcare professionals and researchers in the field as well as patient/parent speakers who will lead discussions on:

  • current paediatric FH services within the UK
  • the latest NICE guidelines
  • considerations for future provision
  • commissioning of FH child services
  • effective transition from paediatric to adult services

The event also provides an opportunity to develop your network and share innovative ideas with your peers in order to advance paediatric FH services and provide improved patient outcomes.

Please see the FULL PROGRAMME below:

09:30 – 09:50 Registration

09:50 – 09:10 Welcome – BHF & Familial Hypercholesterolaemia

10:00 – 11:20 Session I - Chair: Dr. Anupam Chakrapani, Consultant in Paediatric Metabolic Medicine, Great Ormond Street Hospital, NHS Foundation Trust

Genetics and natural history in childhood Steve Humphries, Emeritus Professor, Cardiovascular Genetics, Institute Cardiovascular Sciences, University College London (20 minutes)

What should we be offering to children with FH: NICE guidance 2008-2017 Mrs. Lorraine Priestly-Barnham, Clinical Nurse Specialist in Familial Hypercholesterolaemia and Cascade Screening, Royal Brompton & Harefield NHS Foundation Trust (20 minutes)

How many children with FH are currently identified? UK Paediatric Register and PASS data Dr. Uma Ramaswami, Consultant In Inherited Metabolic Disorders, Royal Free London NHS Foundation Trust (20 minutes)

11:20 – 11.50 Refreshments

11:50 – 12:50 Session II

What services do we currently have? Have things improved since the National Audit 2010? Ms. Kate Haralambos, Familial Hypercholesterolaemia Research Officer, Cardiff University (20 minutes)

How many paediatric FH clinics will we need in 2020?Dr. Melanie Watson, Consultant Genetic Counsellor, Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust (20 minutes)

How can children with FH best transition to adult services?
Dr. Bob Cramb, Medical Advisor to the West Midlands NHS FH Project (20 minutes)

12:50 – 13:50 Lunch

13.50– 14:30 Session III - Parents’ experience of having a child with FH

Mr. Steve Boley, FH patient (15 minutes)

Ms. Suzanne Sheppard, FH Parent (15 minutes)

Jules Payne, Chief Executive, HEART UK and Simon Williams, Head of Communications & Policy, HEART UK - HEART UK Children’s Information Leaflets (10 minutes))

14:30 – 15:30 Workshops

Workshop I - How can we help to commission child FH services? Chair: Steve Humphries, Emeritus Professor Cardiovascular Genetics, Institute Cardiovascular Sciences, University College London

Round Table participants:

Mr. Robert Pears - Consultant in Public Health, Adults' Health and Care, Hampshire County Council, Winchester

Dr. Nadeem Qureshi, Clinical Professor of Primary Care, University of Nottingham (TBC)

Dr. Melanie Watson – Consultant Genetic Counsellor, Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust

Workshop II - How can we improve current Paediatric Services? Chair: Dr. Uma Ramaswami, Consultant in Inherited Metaboli Disorders, Royal Free London NHS Foundation Trust

Round Table Participants:

Dr.Saikat Santra, Consultant in Inherited Metabolic Disorders, Birmingham Childrens Hospital

Ms. Margaretha Vanmourik, Genetic Counsellor, West of Scotland Genetic Services

15:30 – 16:00 Action Points and Summary of Workshops Professor Steve Humphries and Dr. Uma Ramaswami

16.00 – 16.10 Closing Remarks

Date and Time

Location

The King's Fund

11-13 Cavendish Square

London

W1G 0AN

United Kingdom

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