AGNC committee meeting 24.6.15
Education Resource Centre, Birmingham Women’s Hospital
Present: Laura Boyes (chair), Anita Bruce (vice chair), Helen Jolley, Peter Marks (secretary), Nicola Taverner, Pam Harris, Liwsi-Kim Protheroe-Davies (treasurer)
Apologies: Anna Middleton
LB welcomed NT to the committee.
Previous mins:
Online voting – not likely to change soon. Await BSGM admin overhaul.
Online payments – PH to look into PayPal options. LB has approached candidate for future BSGM chair. LB suggested AB could raise timescale for next chair at next BSGM Council meeting.
Paperwork for DH training panel fund. LP-D to PDF these docs and add to Google Drive.
Unsolicited mail to member GCs. Peter Farndon replied and would like us to send examples of unsolicited mail so that he can check if any breach of operating procedures. PM to provide specific example of GeneHealth UK mailshot to GCs.
Information sheet for private practice. Caroline Kirwen has produced a GCRB document on this subject. To add or link to this via AGNC website once published. LB enquired if this applies to registered GCs only. The document specifies registered GCs but much of the information applies in any case. Considered creating specific public page on AGNC website to state recommendation that GCs register with GCRB and link to GCRB website. AM and NT to liaise and develop this.
Vision statement has gone to GeL. LB feels that the knowledge of GC work/scope by GeL has increased.
PM suggested that email distribution system is not working well at present. Yahoo group and BSGM administrated email group not up to date. AB to contact Sara Levene about changing the Yahoo administrator so that it can be a committee member. This could be NT or another newer member of the committee. LB to ask at next conference call with BSGM what the plans for email list administration are at present.
L-PD sent financial predictions to BSGM extraordinary meeting for consideration.
HJ contacted new cohort of MSc students.
PM to ask Phil Leonard to further update committee member addresses and also to upload any outstanding minutes to members’ section.
PM to finalise good practice survey and publish.
Agenda proper:
Chair’s report: LB attended extraordinary BSGM meeting. Clearly, BSGM in financial difficulties. Re-affirmed to constituent groups that it is their body and responsibility to support it. Important to have overall voice for the constituent groups. Roles include admin, accounts, conferences, enquiries from public/health professionals, ESHG link, indemnity compliance, maintaining direct debits. Admin support is Peter Farndon plus constituent groups. PM and LB to update AGNC website page in order to reduce number of individual enquiries from prospective GCs ?FAQ document. Membership fee to increase. No BSGM conference this year. One day meeting next year and following year. ?Single large auditorium with option for possible breakout sessions. This may be in London or possibly Belfast. LB/PM to upload official letter from BSGM to constituent groups re: finances on to Google Drive. LB mentioned idea of bringing all the spring meetings together in one place.
Vice chair’s report: see AB’s report. PH suggested that lab configuration will be completed in January 2016, according to last CRG meeting she attended.
Treasurer’s report: See L-PD’s report for figures since Feb 2015. AB attended European Board of Medical Genetics meeting. Concerns in the Netherlands as test requests requiring Dr sign-off even if GC-only cases. Some GCs have left profession. Similar difficulty in American profession. L-PD mentioned that training panel not using much of their budget, though some funds were used for the ‘new GC’ meeting. Some people claiming expenses over 12 months later, which would be refused according to our rules. LB suggested accounts relatively healthy so can continue to fund training panel but if AGNC account becomes depleted then consider using the DH training fund for this. LP-D mentioned accountants have queried whether we are responsible for maintaining the DH fund.
PH raised issue of registering as charity. BSGM is registered charity and their accounts are available via the charity commission website. Must be registered if based in England and have income greater than £5000 annually. To register, need: Purpose for group, written constitution, name, funding sources, trustees (we have all these), charity structure (can be unincorporated or incorporated). If unincorporated then trustees are personally liable for the charity if it goes bankrupt. If incorporated then organisation ceases to exist if dismissed from charity commission register but trustees not personally liable. Assets could still be seized. PH can complete application. Accounts would need submitting every year. £15 application cost, need to keep register of trustees. Would become association charitable incorporated organisation.
PayPal account. PH suggesting setting this up. Would be charged 1.9% per transaction if registered charity plus 20p transaction fee. All committee members agreed that we should apply for incorporated registered charitable status and PayPal account.
CRG feedback (PM) – see report. LB suggested that we should continue to raise issue of what dashboard 11c is actually measuring. ?write formal letter to new CRG chair highlighting inconsistency in definitions. PH to await minutes from this meeting and consider if formal letter is indicated. PH fed back on CRG emails. Concern over use of Genetic Counselling Outcome Measures (GCOMs) as implemented so far in some centres. Questionnaires quite unwieldy. UKGTN project team are going to work with Health and Social Care Information Service to reduce length of time of ‘diagnostic odyssey’. Are there any ‘co-dependencies’ in genetics (ie. Dependencies on other specialities, eg. In the case of Stickler syndrome). LB asked if there is sufficient GC representation on CRG. We are a ‘lone voice’. Lots of laboratory information discussed at CRG. LB/AB to work on formal letter to new CRG chair.
Response to DTC market. LB: BSGM do not police the job adverts on the website. Wider question of how much to engage with companies in terms of what genetic counselling is. PM: 23andme directs concerned consumers to another company offering conversations over telephone with American board-registered GCs. PM suggested idea of some information for the public on our website for people who have used DTC tests and are concerned. LB suggested direct engagement with DTC companies. LB/AB to write email/letter to the companies who have contacted us to date to invite engagement. PM to circulate CRG DTC document draft. LP-D suggested creating a ‘patient story’ related to DTC testing. HJ reports anecdotes from Manchester of people referred in post-DTC NIPD testing. LB happy to be contact with DTC companies for time being.
Spring Meeting: PH (to email details)
UKGTN (AB). AB wishing to handover representation for this meeting. Held in London at the BMA two to three times a year. 11am-3pm. Next meeting on 24/9/15. AB to email committee to ask for volunteer to take this on from next meeting.
Workforce planning (LB). Work with HEE around training includes workforce planning. Last document was from November last year with responses only from 75% of centres. Eight to ten GCs retiring each year. They have suggested input from Mary Lewis, from Centre for Workforce Intelligence. We lack data from the smaller centres. NT asked if the CGS may have performed a similar exercise. AB to raise at next BSGM Council meeting. How do we arrive at appropriate number of GCs per number of population? Will very much depend on GC:consultant ratio, especially the issue of how much work GCs take on. LP-D wondered if we could arrive at a figure by using job plans. PH to raise also at next CRG meeting. LB to email Ruth Newbury-Ecob also about it. May need to repeat data gathering exercise at some point.
Travel awards (PM). Emily Lamb approved for international award (£300).
HEE training (LB). LB has had second meeting (last week – HJ also present) with HEE representatives (along with Chris Patch and Georgina Hall). Encouraged by what was being offered. Sue Hill was not present. Three year programme with intercalated MSc with a number of different modules with work-based learning. Normal NHS annual leave conditions. Band 6. Needs to fit in with other STP programmes. First year consists of generic science module and a research module, basic anatomy, working in the NHS, leadership etc. Four modules in first year in addition to work-based training. Final certificate of completion would match up with requirements for registration. Some surprises: some other allied trainees could opt to do genetic counselling modules (eg. Audiologist). Also, title. Major issue with word “counsellor”. Less of a problem with title – more what the programme is called. Eg. “clinical genetics healthcare”. Need to ensure reciprocity (Heather Skirton addressing this). Central recruitment to begin in January 2016. Need curriculum for MSc by Sept 2015. Tendering process will open in January. Current MSc genetic counselling will run for time being. Diane Stirling looking into similar training programme in Scotland. Genomics funding for this is available to pump-prime from GeL. Ongoing funding is uncertain. Discussed letter from All Wales genetics service. A particular issue to Wales is that GCs cannot move from band 6 to band 7 without applying for a new post. Not clear if educational institutions from devolved nations can bid to provide some of the MSc content. Programme size to be determined. There will be a ‘recruitment day’, which the profession will need to be involved in. Centres will be able to ‘propose’ individuals wishing to become a genetic counsellor already working within the NHS. There may be the option of nurses taking individual modules from the programme for the purposes of CPD. This may be appropriate or they may wish to take some from the MSc Genomic Medicine. LB to reply to Andrea Edwards.
New GC Items (HJ). A couple of students have emailed – what are practicalities around converting student to full AGNC membership and can they join the new GC group before full membership formalised. AB to contact Peter Farndon to enquire if the upgraded membership occurs automatically. Fees should increase in the April following graduation. AB mentioned a new GC issue raised at mentor training day. Could there be more support for GCs going through registration? A network, perhaps. Could this be addressed by new GC group? HJ to take back to group.
AOB. LP-D asked about AVR. She has not been asked for financial contribution yet. AB suggested some sort of formal ‘thank you’ gift/celebration for the GCRB for their work on the application. LB to email Diana Scotcher about the financial aspect. Website: PM to ask Phil Leonard to put the AGNC committee article for the BSGM newsletter on the front page of the website. LB/PM to look at the ‘how to become a genetic counsellor’ section. PH suggested creating a registration page for the spring meeting, incorporating PayPal payment. PM asked if it might be worth planning to have committee representation from all devolved nations, perhaps in the form of co-opted members if they are not full members. Could consider model of attending joint meeting once a year. AB to contact representatives from these nations (Andrea Edwards, Mark Longmuir, Aoife Bradley).