NHS National Services Scotland

Transcription

1 Familial Arrhythmia Network of Scotland Steering Group Meeting Action note from above meeting held on Wednesday 11 June 2014 at 1.30pm in Boardroom, Kings Cross Hospital, Dundee. Present: Dr Anna Maria Choy Greg Fearn Dr Karen Smith Consultant Cardiologist & FANS Lead Clinician, NHS Tayside FANS Network Manager Cardiology Nurse Consultant, NHS Tayside Videoconference link: Southern General Hospital Glasgow: Dr Vicky Murday Consultant Clinical Geneticist, NHS Greater Glasgow & Clyde Dr Iain Findlay Consultant Cardiologist, Paisley, Royal Alexandria Hospital Aberdeen Royal Infirmary: Dr Paul Broadhurst Dr John Dean Consultant Cardiologist, NHS Grampian Consultant Clinical Geneticist, NHS Grampian Western General Hospital - Edinburgh: Dr Rob Ainsworth Consultant Forensic Pathologist, NHS Lothian Dr Wayne Lam Consultant Clinical Geneticist, NHS Lothian Dr Kerry Anne Shearer Consultant Forensic Pathologist, University of Glasgow Apologies: Bob McConnachie Audrey McColl Dr Neil Grubb Dr Catherine Labinjoh Dr Gillian Marshall Dr Karen McLeod Dr Alan Rae Dr John Stout Denise Oxnard Dr Ruth McGowan Prof Andrew Rankin Dr John Williams Hazel Hailey FANS Public Representative, Cardiomyopathy Association FANS Public Representative Consultant Cardiologist, NHS Lothian Consultant Cardiologist, NHS Forth Valley Consultant Cardiologist, NHS Greater Glasgow & Clyde Consultant Paediatrician, NHS Greater Glasgow & Clyde Consultant Cardiologist, NHS Greater Glasgow & Clyde GP, NHS Grampian Genetic Counsellor, NHS Greater Glasgow & Clyde Consultant Clinical Geneticist, NHS Greater Glasgow & Clyde Professor of Cardiology, University of Glasgow Consultant Forensic Pathologist, University of Glasgow Genetic Counsellor, NHS Grampian 1. Welcome and apologies Action Dr Choy welcomed everyone to the meeting and apologies were noted as above. Before the meeting started Greg asked everyone present their permission to use digital voice recorder. There were no objections raised. 2. Adoption of minute from meeting: 10 th February 2014 There were 2 comments received: 1

2 Point 3 Matters Arising 4.2 West of Scotland MDT second sentence should read: WL queried screening for patients with gene positive female negative. Point 6 Sudden Death Investigation Procedures: JD suggested contacting Paul Brand and stated he would him With the above amendments action note was approved as an accurate record of the previous meeting. 3. Matters Arising 4.2 West of Scotland MDT Wayne Lam informed the group that the agreed meeting with John Dean and Vicky Murday with regards to drafting protocol related to screening for patients with gene positive phenotype negative is still to be scheduled (AMC confirmed this action to be carried forward to the next meeting). It was noted it would be useful to know the number of patients with hypertrophic cardiomyopathy that should be followed up in Scotland. Vicky mentioned there is research in Boston, USA carried out looking at similar issue AMC asked Vicky to get in touch with that hospital and acquire the protocols and details regarding their trial. It was also mentioned there are European protocols available (2010) AMC surmised the group should revise both European and American protocols and discuss what could be adapted. 6. Sudden Death Investigation Procedures Paul enquired about the status of the pilot project led by Alyson Leslie in Tayside. AMC explained that this is a pilot project looking at the processes after the death of a young child. It proposes to look at improving the processes involved and also to examine more efficient and more standardised methods data collection. John suggested it would be very useful for Alyson and Paul Brand to have discussion about the project (Greg to send Paul s details to Anna Maria). At this point Greg asked the group whether it would be acceptable to create an action plan to include all actions from previous meetings in the one table with the initials of the people to progress each piece of work. The group agreed Greg to circulate an action report after the meeting. 4. Postcode audit of requests for genetic testing for inherited arrhythmias WL/JD/VM VM AMC/All GF/AMC GF Greg shortly summarised the audit confirming the data is for years for both familial arrhythmia (FA) and hypertrophic cardiomyopathy (HCM) testing. The results show all tests combined: predictive and cascade, looking at patients at health board level. Discussion took place and all agreed the format of the data needs to be looked at Greg requested all comments to be forwarded to him. It was suggested to possibly include this data in the network annual reporting and 2

3 tie it with the standards before it could be discussed on the health board level. It was also agreed that Greg would contact health boards whose data was noticeably outside the national average. GF 5. Research Update Elijah Behr RASE Study AMC shortly summarised the Rare Arrhythmia Syndrome Evaluation (RASE) study that is being explored by Dr Elijah Behr with the possibility of undertaking a 5 year national study looking at Brugada Syndrome, IVF and early repolarisation syndrome, CPVT and short QT syndrome. A number of organisations like BHF & Genomics England have already expressed their interest in being involved. There were several issues raised by the group: Ethics application Recruitment of coordinator for Scotland to carry out recruitment of patients Access to output from Genomics England and how the results will be fed back There was general consensus within the group to get involved with this study; however AMC asked John and Ruth to co-ordinate data collection with a view to submit collective response to Elijah. AMC/JD/RMcG 6. FANS / SAG Symposium Review The copy of the report was circulated to the group for information. AMC thanked all the speakers again highlighting that the quality of the talks was excellent. The frequency of Symposium was discussed and possibility of Autumn 2015 as the next date. Greg is to send out doodle poll to the group to agree the date. 7. Sudden Death Investigation Procedures Greg informed the group he met with Lindsay Allen from Scottish Cot Death Trust based in Yorkhill and had discussion how SCDT and FANS could work together. One of the issues discussed was the process of investigating of infant deaths Lindsay had reported that there are on average 25 infant deaths per year in Scotland in the age group up to 2 years old, treated as unexplained. There could be potential for undertaking cardiac genetic testing for each of those unexplained deaths to investigate whether cardiac conditions played part in the cause of death. Also general awareness and knowledge of sudden deaths in paediatric pathologists was raised there could be an opportunity to produce guidance/letter around inherited cardiac conditions or possibly for the FANS network to take part in their study/education days. 3

4 The group continued discussion with regards to developing protocols in the event of a sudden death of young child as to whether genetic testing is carried out routinely. It appeared that there are differences in paediatric pathology practice across all health boards. This to be investigated further in the future. Rob also reported that due to retirement of Prof Pounder head pathologist in Tayside, there is an opportunity to raise this issue with Prof Stewart Fleming who has taken over. AMC to contact Prof Fleming. AMC 8. Workplan 2014/15 GF shortly summarised all the activities contained in this year workplan for the network. Greg informed he will send the draft document to the group and asked for any comments and additions. There were few suggestions noted from people present: (WL) To compare genotype screening between people who died in hospital and outwith. Greg to speak to Wayne after the meeting how that could be extended to be carried out across Scotland. (GF) Possibility of developing a web based educational tool for staff indirectly involved in care of patients with inherited cardiac conditions. Similar to the Heart-E project led by CHSS. If inherited conditions aren t included in future modules of Heart-e, there could be scope for setting up a similar learning resource by the Network. (JD) There are patient information videos created by Cleft Palate service recordings of staff advising what the treatment looks like etc good idea to adapt? John to forward information to Greg (KS) New campaign released by BHF focusing on ICC good opportunity to work closely with the existing links in organisation. They are keen to support development of patient stories or patient experience. Karen asked everybody for the feedback/patient stories from their area she will liaise with Linda O Neill to action. GF/WL JD/GF KS/LO 9. Sub Group regional update 9.1 NMHAP Sub Group Karen is to circulate minutes of the last NMHAP meeting in due course. The group is finding it challenging to retain engagement from staff based in the West and North of Scotland. Patient pathways work is ongoing The group is finalising questions to look at an audit of specialist provision to support patients with familial arrhythmias both from genetic and specialist nurses perspective In Tayside its now a year since BHF supported 2 specialist nurses posts evaluations of the new service are now completed and the new clinic is up and running. Education: the group organised training for staff on arrhythmias and ECGs incorporating more uncommon arrhythmias to raise awareness. There were 60 delegates attending and the event was a success KS 9.2 East of Scotland MDT 4

5 MDTs in Lothian are now well established however referrals from Fife remain challenging. Karen suggested getting in touch with Lynn Garvey MCN Manager in Fife. Greg to link with Lynn and Wayne to open discussions. GF/WL/LG 9.3 West of Scotland MDT The West MDTs continue to be work well, led by Dr Gillian Marshall with efficient admin support provided by Vicki s secretary. 9.4 Tayside MDT Joint MDT clinics run since beginning of the year located in Forfar Community Hospital, however decision had been made to move the clinics to central Tayside to help the service to work more efficiently and effectively. 9.5 North of Scotland Paul shared with the group that Prof Bill McKenna, Professor of Cardiology at UCLH, has an honorary position at Aberdeen and attends their clinics on occasional basis. 9.6 Pathology RA reported that he, John Williams & Kerryanne Shearer are to meet paediatric pathology colleagues to discuss procedures regarding genetic testing (Greg to get in touch with Rob and share contacts from The Scottish Cot Death Trust). GF/RA 9.7 Patient Forum The next meeting is due on 18 June 2014 in Perth. Issues to be discussed include patient resources, BHF and possibility of producing patient videos. 10. AOCB Nil noted. 11. Date and time of the next meeting Doodle poll is to be sent out by Network Office in due course. 5