FH Intelligence Network
Teleconference Meeting Minutes
Tuesday 21st February 2016 7pm – 8pm
Chair: Jules Payne in the absence of Dr Dermot Neely
The HEART UK FH Intelligence Network meeting has evolved from HEART UK’s FH Implementation Team. The meeting is a dial-in teleconference for health care professionals and commissioners directly involved in the delivery or development of FH services. The purpose of the meeting is to share information and help people address challenges with setting up and implementing FH services.
Nominations for a co-chair were called for and invited by the next meeting. Nominations from an FH Nurse will be particularly welcome. Please self nominate and send an email to Simon Williams.
TOPICS FOR DISCUSSION
Croí, the West of Ireland Cardiac Foundation are beginning a campaign to develop a new FH service following an FH Europe meeting organised and held in November 2016.. FH Europe includes 24 member organisations and is administered by HEART UK, with Jules Payne as chair. An FH Europe meeting has been convened in the European Parliament on March 8th to highlight variations is available FH services across member countries illustrated by a ‘Heat Map’.
It was suggested that the support of chemical pathologists would help initiate FH services in the West of Ireland and HEART UK would share campaigning ideas, including using social media.
Similarly, FH service in Surrey and Sussex are at an early stage and suggestions were discussed to help progress work in this area. Genetic tests, although not directly funded, are sent to Bristol and includes tests for children. The service is currently exploring recording methods and PASS was suggested as an effective registry and JP offered a HEART UK funded PASS licence.
PASS is being promoted as a single nationwide registry in many parts of England for adults with a separate paediatric registry. Wales uses PASS for adults and children. Scotland have a separate registry for all genetic conditions and Northern Ireland do not have PASS as yet.
A more favourable licence fee had been negotiated by HEART UK making the access to the registry more accessible and HEART UK facilitate a limited number of fee-free licences.
A HEART UK FH Registry Advisory Group had been convened to lead on the development of a national and uniform system approach. The next meeting is due to take place in March 2017.
Genetic Lab meeting
A meeting of genetic labs is being organised in the very near future for genetic labs to discuss service developments.
HEART UK Children and Young People Programme
A programme of support for children and young people is currently being developed by HEART UK, including regional family events and peer-to-peer support networks. A main component of the programme is developing literature and information resources and three booklets have been written. The booklets are being reviewed by children and young people and will be available from March. Additionally, a FH Advisory Board (FHAB) of young people will be convened towards the beginning of the summer, when exams are over, to oversee the Programme.
Professor Huon Gray, National Clinical Director for Heart Disease, NHS England and Professor Sue Hill, Chief Scientific Officer, NHS England, are holding a meeting in March regarding ‘Improving outcomes in familial hypercholesterolaemia through personalised medicine’ to which JP had been invited.
The next FHIN meeting will be held 21st March 2017 at 19:00 – 20:00 (Dial 0800 368 0707 Participant pin: 7992828# from 18:50).