FH Intelligence Network
Teleconference Meeting Minutes
Tuesday 15th November 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 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
A genetic lab reprocurement exercise by NHS England is underway with meetings information gathering meetings held on 4th November and 28th November.
It is understood that the proposal is for service provision for 11 geographical locations. The model of future provision will encompass Genomic Central Laboratory Hubs, providing state of the art facilities with specialist skills and expertise networked with Genomic Local Laboratory Hubs (local laboratory service providers). The process will include a call for bids in spring 2017, with an outcome of these in autumn 2017 and mobilisation for Spring 18. It is proposed that laboratories will be designated as specialist service providers within this process. Further detail is expected in January.
The purpose of the exercise is to improve efficiencies and improve data sharing and co-operation, which would build upon the successes of FH services.
HEART UK agreed to convene a meeting of genetic labs across the UK and to include Cardiff and Aberdeen in Jan/Feb 2017 to assist with collaborative working and address issues of mutual benefit, such as classification of variants.
HEART UK Lipid Clinic Census
HEART UK was exploring additional support and ways to collect the information asked in the census, which to some was seen as difficult to provide.
HEART UK Children and Young People Programme
HEART UK had recently held a Family Day to help develop FH support services for children and young people. Focus groups were held with children and teenagers at the event, which helped formulate ideas. A further exercise would be held to widen discussion with HEART UK Ambassadors and with children and young people, through lipid clinics.
HEART UK are also developing educational materials which will include materials available for families.
Significant progress is being made with contractual issues regarding implementation of the new licences.
External costs have been passed on to genetic labs and there was a concern that this would have an impact on the cost of genetic testing. There was a concern that these external pressures would increase prices in the new year of between 3% and 10% to the labs.
It was felt that the recent article in the NEMJ by Queen Mary University of London assessing the efficacy and feasibility of child – parent screening in primary care practice would have implications to the prevalence of FH and would need to be considered in the context of 1:500.
The review has potential implications on prevalence in parts of Scotland.
A further paper, The GLAGOV Randomized Clinical Trial was discussed and the effectiveness of evolocumab. The paper will be circulated with the HEART UK HCP e-newsletter in December.
Next Meeting The next meeting would be held on Tuesday 17th January 2017, 19:00 – 20:00 lines open from 18:50