AGNC Committee Meeting MINUTES Tuesday 11th February 2014 ITEMS FROM PREVIOUS MINUTES Meeting room, John Lewis, Solihull

ATTENDEES Laura Boyes (chair), Anita Bruce (vice chair), Liwsi-Kim Prothero-Davies (treasurer), Peter Marks (secretary), Oonagh Claber, Cath King, Catherine Houghton

APOLOGIES None

MINUTES TAKEN BY Peter Marks

Agenda Items VARIOUS DISCUSSION

AB confirmed AGNC position statement on incidental findings accepted by EJHG.

CK conveyed message from Sara Levene that our email list is not up to date due to members leaving not being removed.

LB: career structure document to go on AGNC website.

LB: ‘BSGM’ needs to replace ‘BSHG’ in AGNC constitution. Will need to be raised at AGM in April.

LB: AGNC logo. No logo agreed upon from previous submissions. Agreed to feedback to membership and thank for submissions. AB to contact Cindy Zaitsoff in New Zealand and to combine submissions on a Powerpoint slide. Difficult to get quality design on shoestring budget.

LB: Workforce planning ongoing. Any offers of assistance welcome.

LB: Dina Kotecha of BSGM has agreed reduced conference fee for students. LK suggested MSc students not aware of eligibility for free membership of AGNC. Membership would roll on to fee-paying from April after course completion. Proof of student status required. Perhaps course leaders could sign statement of proof.

LB: Agreed that AGNC will have business meeting at BSGM conference this year. Next year no AGNC spring meeting due to combined European meeting in Glasgow. Also, no BSGM meeting proper next year. Need to make membership aware of this. PM to arrange for this to go on AGNC website.

LB: JCGM array workshop going ahead. Sally Taffeter to go as AGNC representative on 24 th February 2014. Tara Clancy, Sally T, Andrea Edwards and LB were suggested as representatives to go, invited in addition to reps from every clinical genetics and fetal medicine.

Page | 1 AGNC Committee Meeting Minutes dd/mm/yy AB/CG: Trainee day being arranged by Claire Dolling this year. Open to all trainees. Transport funded if trainees approved by training panel. To be on Wednesday June 25 th.

LB: Has discussed AGNC scientific rep position with Rhona MacLeod. She suggested Sue Kenrick. All agreed Sue would be excellent in this role. Need to think about Rhona’s successor.

LB/OC: Questions for lead GC meeting regarding data around proportion of GC-only consultations.

LK: Raised idea of expenses threshold. Agreed need for pre-approval for meeting expenses over £250. If traveling 1st class need to pay difference as it stands on day of booking (if exceeds standard class price).

CK: travel award awarded to Caroline Benjamin. She will need to write a feedback article for BSGM newsletter.

AB: Electronic records integration at GOSH has been agreed. Genetics records will be integrated into main hospital records but will be a restricted tab with warning about sensitive information relating to family files.

LB: Suggested Phil Leonard to email membership asking for feedback and ideas for AGNC website.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE Ensure email list up to date

PM

Ongoing

Career structure document to be uploaded to website

LB/Phil L

April 2014

BSHG to BSGM change to constitution – add to AGM agenda

PM

April 2014

Thank membership for logo submissions – add to AGM agenda

PM

April 2014

Ensure MSc students aware of free AGNC membership – email course leaders

PM

April 2014

State of play with meetings next year in view of European meeting to go on website

Page | 2 AGNC Committee Meeting Minutes dd/mm/yy PM/Phil L

April 2014

Email out to membership asking for website ideas/feedback

CHAIR’S REPORTVICE CHAIR’S REPORTTREASURER’S REPORTCIRCULATION OF OFFICIAL DOCUMENTS PM/Phil L

April 2014

LB DISCUSSION LB: BSGM council and JCGM report. Separate document on AGNC Google Drive account and for website.

AB DISCUSSION AB: Nothing to report. No meetings attended. AB responded to DoH regarding UKGTN document. Next meeting 25th March 2014.

LK DISCUSSION LK: Accounts slightly up. Chasing £400 for focus groups. Training panel now claiming expenses from AGNC now that DoH funding has ceased. Rhona MacLeod to be signatory so can sign off for anyone other than herself. Accounts package discussed: Sage is recommended package and easy to use. Cost is £156 inc VAT. Can be transferred from one treasurer to next. CK has old accounts on MS money package. Agreed to archive. these. Can be converted to excel spreadsheet. Agreed to buy Sage.

Pre-approval of expenses over £250 required as discussed above. Agreed to keep accommodation cap at £75 per night.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE To purchase Sage accounts package.

LK

April 2014

To find out how to convert MS Money files to Excel

AB/LK

April 2014

To archive old accounts

CK/LK

Ongoing

LB DISCUSSION Page | 3 AGNC Committee Meeting Minutes dd/mm/yy LB: Should various documents be circulated only around GC leads or whole membership. Concern expressed that documents might be missed that might be important to membership. RAPID newsletter relevant to all – PM to arrange for this to go on website. On matter of documents in general it was agreed that we should check with the relevant organizations that it is OK to circulate documents. Then circulate around committee and get agreement from 50% of group prior to circulation. Sharing to go AVR APPLICATIONGCRB FEE RISEPUBLIC ENGAGEMENT WITH REGISTRATION PROCESS through secretary.

PM: Suggested emailing membership with significant changes to website.

LB: Suggested emailing out shortly after BSGM newsletter with copy of AGNC news item. PM to author the news item for AGNC section. Include photographs of spring meeting etc.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE RAPID newsletter to website

PM/Phil L

April 2014

Secretary to author AGNC news item twice a year to include interesting photographs. Also, to email membership subsequent to publication.

PM

Ongoing

LB DISCUSSION LB: putting together draft application. Re: financial contributions from genetics centres – responses from 9/23 centres (all positive) with pledges from another two. Centres generally supportive. GCRB developing website for use with professionals and public. £5000 for website gifted. GCRB membership will need to vote on submission of application, ideally to submit in 2014.

AB DISCUSSION AB: Some GCs have reacted negatively to fee rise and formal complaints to GCRB may follow. Absolute increase in fee is thought to be £300 to £500 for five year period. All agreed in line with other professions. Administration should be robust.

CG: is dual registration necessary for Trusts in case of nurses. This will vary from Trust to Trust. AB happy to circulate accounts as required.

LB DISCUSSION LB: How would patients raise a concern regarding registered GC, for example? She has had discussion with Genetic Alliance UK, who were keen to help. Might dovetail with best practice scoping exercise (see below).

LK: suggested patient panels as used in Wales.

CH: Manchester service has used this approach, too.

Page | 4 AGNC Committee Meeting Minutes dd/mm/yy ACTION ITEMS PERSON RESPONSIBLE DEADLINE To consider this issue in best practice scoping exercise

TRAINING POSTSVISION STATEMENTTRAINEE FEEDBACKSPRING CONFERENCE CH/PM

Ongoing

LB DISCUSSION CH: Reported Manchester advertising four posts and ended up with all appointed on trainee basis.

LB: Birmingham similar situation. Shortage of trained GCs a problem. Hilary Burton to raise at next JCGM meeting.

CH: suggested making full use of training panel and encouraging people to use training panel format. All agreed.

LB DISCUSSION LB: attended joint meeting of JCGCR and GCRB. Discussed direction of genetic counseling. View to this being in the public domain. Could be use in many different ways.

PM: suggested adding ‘reproductive choices’ into first bullet point in draft document.

CK: wondered if profession may evolve into ‘specialist genetic counsellors’. Role of specialist nurses in cascade testing worth considering.

All to look at second paragraph as seems too long. Feedback to LB ASAP. Diagrams discussed. Mixture of preferences expressed.

CK suggested first preferable as circle seems to suggest one person compared with second diagram.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE To feedback on vision statement draft

All to LB

ASAP

CG DISCUSSION CG: Updated on trainees. Not much response from trainees in respect of further training day.

CK DISCUSSION CK: reported cost as just over £600 for venue. All speakers arranged. Abstracts to be reviewed this week. Not yet received from Dina Kotecha. Catering being negotiated. No contact from charities regarding stalls. GCRB and JCGCR would like to have stands. No reason for charities to be excluded if

Page | 5 AGNC Committee Meeting Minutes dd/mm/yy they request to be present. Unable to locate BSGM cancellation policy. To emphasise closing date as being two weeks prior to conference.

CK: confidant that costs within reason. Programme outlined as per that on website.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE Ensure applicants aware of closing date two weeks prior to conference

LK

ASAP

LB DISCUSSION LB/OC: suggested Georgie Hall presents AVR in AGM.

CH: pointed out that all GCs should be aware of AVR irrespective of registration status. AGM is 30 minutes plus any extra. Lunchtime could be 15 minutes shorter. Agreed therefore 1.45pm restart.

OC: ?AVR handout in conference pack such as a FAQ sheet.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE Modify meeting timetable to reflect AGM timings/lunchtime

CK

April 2014

Agenda to include: previous meeting minutes, treasurer report, constitution update, vision statement, position statement, welcome to new committee members and acknowledgement of Phil L as webmaster

PM

April 2014

OC DISCUSSION OC: presented feedback from meeting 30th January. Report available as separate document to be on Google Drive and on website with these minutes.

CH: Suggested Caroline Benjamin has been doing work around GC-only consultations in terms of total cost of various patient clinician interactions. May feed into GC best practice guidelines (see above).

OC: Next meeting by teleconference.

LB: Queried whether OC wishes to continue as CRG rep. To discuss at next committee meeting.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE Page | 6 AGNC Committee Meeting Minutes dd/mm/yy OC to email report from CRG.

OC to PM

ASAP

ANY OTHER BUSINESS To discuss CRG rep role next committee meeting – add to agenda

PM

June 2014

ALL DISCUSSION LB: committee member elections x 2 required. Last meeting for OC and CK in June. Need to put call out via Dina Kotecha at BSGM, email group and AGNC Yahoo group. To send out nomination form. Three week turnaround for nominations eg. By 4th March. Close voting 27th March.

LB: suggested joint meeting in June with lead GC group and JCGCR. Date suggested as 23 rd/24th June. LB and CH to scope venues. November meeting to be Tuesday 11th November and to include lead GC meeting on additional day with ?Wednesday 12th. Discuss at June meeting and AGM. AB and CH to scope venues.

AB: Position statement on website (IFs) needs attention as draft version online.

ACTION ITEMS PERSON RESPONSIBLE DEADLINE To organise 2x committee member elections

PM

ASAP

Scope next two meeting venues

LB/CH/AB

May 2014

Correct IF position statement on website

PM/Phil L

ASAP

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