AGNC Joint Meeting (Committee, Leads, GCTP, JCGCR) 11Th November 2014

AGNC Joint Meeting (Committee, leads, GCTP, JCGCR) 11th November 2014

LB thanked those in attendance for coming. Noted two years since previous joint meeting.

Present: Laura Boyes (Chair), Helene McCann, Melanie Watson, Alison Bradbury, Gilly Bromilow, Vicki Wiles, Anna Middleton, Georgie Hall, Hazel Hailey, Barbara Staynor, Diane Sterling, Diana Scotcher, Margaritha van Mourik, Vicky Kiesel, Sally Taffidor, Marion McAllistor, Pam Harris, Catherine Houghton, Glen Brice, Mushtaq Ahmed, Lindsay Odair, Anita Bruce (Vice Chair), Christine Patch, Liwsi Kim Protheroe-Davies (Treasurer), Aoife Bradley, Karen Bailey, Vanita Jivanji, Sue Kenrick, Judy Tocher, Claire Dolling, Peter Marks (Secretary)

AGNC feedback:

BSGM (LB).

New vice chair Bill Newman.

Future of BSGM conference discussed. Good turnout, particularly from GCs. Conference has made significant losses (20 to 30k) in recent years. ?alternate years. A Bradbury suggested study leave can restrict access for GCs. She reported decline in her department’s attendance. LB reported tension between content, cost and familiarity. Content can be challenging, in a positive way (out of ‘comfort zone’). Margarita suggested venue is large and makes numbers feel small. GB suggested cost not that expensive compared with other international meetings. One suggestion was alternating years and having spring meetings in the other year. Other suggestions included broadcasting Great Debates. VW suggested that alternating years may feel too great a time between meetings for such a rapidly developing field. VK suggested having AGNC meeting concurrent with BSGM in order to cut costs. GB emphasied importance of BSGM as umbrella organisation. LO suggested harder to justify getting study leave for large conference when not totally relevant. CP suggested that BSGM is lean organisation reliant on conference for financial support. Stated need to maintain BSGM so that GCs supported. MM suggested smaller and modular conference with reduced fees and packages including webcasts etc. to reduce travel costs. LB suggested ?alternative venue. Consensus that Liverpool difficult to access and Birmingham/Manchester should be considered. Also consensus that alternate years not favoured.

Data sharing. Came out of IG enquiry regarding sharing of genotype/phenotype data on variant databases that might identify patients if rare mutations etc. Data only pseudoanonymised therefore patients could be identiable therefore there should be consent to share. Issue unresolved at council. Need to go back to Caldicott to challenge this. AM reported this is being discussed on international level (eg. Global Alliance has created international guidelines).

Workforce planning. In common with other professions (scientists, consultant geneticists), there are workforce planning issues. LB will raise with GEL/HEE. Regulation. To be further discussed by GH later.

JCGM (LB)

New chair is Nick Lench. He used to be director of genetics service at GOSH. Runs private company called Congenica, which is consulting to GEL. Based in Cambridge.

Interested in GC regulation. They are keeping an eye on developments in this area.

UKGTN and panel tests. Majority of tests to be approved now are panel tests. Some redundancy and trying to avoid this as well as ensuring quality assurance. Proposed putting together workstream for this sizeable task.

New technologies in PND workstream. Several GCs attended related meeting. Considerations included IFs, prenatal arrays etc. in order to provide national guidelines and leaflets. Representation from genetics and obstetrics/gynecology. To be written up and summary circulated when available. National information sheet and consent form to be produced. Not yet finalised and published. Recommendations including formation of Fetal Genetics group (RCOG).

LB asked for issues to be directed to her or AGNC members to take to these various groups. AB suggested that these groups have been broadly supportive of GCs to date. GB suggested feeding back difficulties many Trusts have in supporting training and education. LB encouraged leads to encourage GCs to apply for AGNC travel awards. LB encouraged attendance at European meeting in 2015. CH suggested there will be a significant psychosocial aspect to the meeting.

Treasurer’s report (LK)

Still taking over DH training panel expenses and administration. Accounts fairly even. Increased spending on travel awards, which was intended. LB invited ideas to help support the profession in terms of training/development, which AGNC funds could be used for.

UKGTN feedback (AB)

Much discussion around panel testing, which is predominating currently. BRCA workshop was held in July. Aimed to get consensus for BRCA testing following last year’s NICE guidance. AB to circulate examples of relevant gene dossiers. Some inequities noted in BRCA testing across UK. VW asked if UKGTN approval process is prohibitively slow. Some clinicians in Cambridge developing their own protocols. GB on UKGTN committee and he reported that process has slowed since introduction of panel tests, understandably considering significant workload involved with these. More frequent UKGTN meetings to address this. LB understands that difference between NICE guidance and UKGTN recommendations is around referrals from non- geneticists. CP reported that details contentious around testing at point of diagnosis. AB suggested inevitability around genetics not being involved necessarily in such testing, eg. oncologists and PARP inhibitors. CP emphasised importance of being involved with mainstream pathways. Also contention around GCs being involved in pathway and being able to request genetic tests. Resistance to this from some geneticists, apparently. UKGTN BRCA dossier now finalised. VK also raised issue of threshold for testing for Jewish mutations. UKGTN has suggested threshold for this increased. Departments will need to pay the difference if they wish to offer testing below threshold. Discussion around point of diagnosis testing. Specialities to pay for testing, though this does not seem to be reflected in specialist commissioning documents. POD testing occurring in around a third of centres (by straw poll). CP emphasised importance of rapid and proper genetic assessment (eg. some ovarian ca can be Lynch associated), good pathway. Test result most important for surgical decision, therefore 8 week turnaround likely to be sufficient.

CRG feedback (PH)

Last meeting 29th September. Feedback on dashboard. Still in tendering process. Advised to continue collecting data. PH raised issue of definitions (11b and 11c). They suggested we use our own definitions of these. Discussion around reconfiguration of laboratory services. Consultation to CPAG then to public. From Feb 2015 there will be procurement process. Not being prescriptive about number of lab services at present. Hoping to go live end of 2015/early 2016. Both public and private providers can bid. Model will be ‘hub and spoke’. Big labs will decide which smaller labs they will be working with. Smaller laboratory services expected with greater output. Update on 100K genome project. Procurement in process. Centres not successful in bids will need to refer patients to nearest recruiting centre. To go live in Feb 2015.

Meeting on 28th October to score proposal on implementation of NICE guidance (BRCA testing). Another proposed paper on ‘DNA repair service’. Needs to be supported by ARDAG. Need further clarity on issues including follow-up care. Questions around panels of testing for DNA repair conditions. UKGTN: 45 new tests recommended (23 panel, 2 NIPD). Seems likely that the NICE guidance will be approved in terms of funding.

Block contracting discussed in context of increasing referral rates and 18/52 targets. Insufficient funding noted. Need to mainstream identified. Two year freeze on tariffs. This all just applies to NHS England. LB suggested straw poll on block contracts - ?third of centres on block contracts. CP suggested that there will be no more funding associated with ever increasing activity. Need to work more creatively, mainstream, use effective triage. VW suggested Cambridge are increasingly bouncing referrals and using standard letters more creatively. PH reported dramatic increase in referral rate in Liverpool with no increase in staffing levels in 10 years. LB invited suggestions for sharing practice around this issue. VW described their PICS service. Large proportion of referrals are not seen (mostly cancer). 18/52 pathway paused for duration of triage. CP described how Guy’s support and train FH nurses to work in the satellite screening clinics. Describes as very efficient system. Some nurses paid for by breast screening budget. Patients can self-refer to these clinics. VK described keeping detailed record of triage activity. LB described WMFACS system in Birmingham. GB described FH form used for general referrals now in her dept. Alison Bradbury also described how her centre is developing an admin-based triage service. LO described GRAP system in Northern Genetics Service (south of their region only). Planning away day to map processes and planning. PH suggested no national consensus considered at CRG, only invited suggestions around this. LB enquired if we could propose a national workstream for this. CP suggested common principles but local variations due to differences in funding and structures. No pre-clinic workup at Guy’s. No evidence about which way is best. No HHC, AATD, FH seen. Same in N Ireland in terms of these AR disorders. PH suggested that in Liverpool they have stopped pre-clinic workups - consultant clinics now breach 18/52 and involve repeat appointments. Too early to judge for certain. CP suggested that all appointments considered first appointments irrespective of clinician involved. LB raised dashboard and those specific items mentioned above. She suggested that we have input into these definitions (11a, b, c). VW suggested these were relevant data to capture. PH emphasised importance of robust data capture through IT systems. GH highlighted differences in interpreting the definitions and lack of standardised methods of data collection. ?could AGNC help with this. CH suggested that the IT systems are different from centre to centre and so intervention from AGNC will not be fruitful. MM raised point that GC appointments are rarely if ever purely information gathering exercises. Always some element of counselling. Raised point that we are not measuring patient outcomes to determine this. Information giving as distinct from counselling. VT’s centre conducted audit around pre-clinic appts - determined that there was not much psychosocial counselling going on. PH reported some consultants having to bring patients back due to insufficient understanding of the information discussed in clinic now that GCs not providing foundation for this beforehand. Alison B reported increase in consultant appt length and also 18/52 breaches. HM described Nottingham’s patient information gathering system. PH wondered if we should focus on what is most cost effective for the patients and that they have a good service. VK suggested sending out FH forms and also certain information leaflets in advance. In NI, FHF is sent out when patients book their appointments. Helpful experience to date. LB suggested re-considering definition of 11c.

Sharing good practice (CH/PM)

CH and PM are preparing pilot survey of centres offering presymptomatic testing for conditions with possible interventions, based on 2003 survey by Brain et al. This is not for purposes of producing ‘best practice’ guidelines as this will be difficult to achieve in practice but as a document surveying current range of GC practice in this area so that practice can be developed. This will be an online survey sent to all leads to be completed either by them or a designated colleague. All leads agreed to participate. CH/PM to develop survey and send out by new year. Data by summer 2015.

GCRB (BS/DS)

Prototype website. Working with Chocolate Grape. Major change is public interface (patients and employers to access). Role of GC, what to expect when you see a GC, training, how to make a complaint about a GC. To be smartphone-compatible. To support online payment for registration/re-registration. GCRB looked at various registration processes. Most relevant similar website was felt to be that of BACP. To go live in a few months. General approval for website design. GH asked about contract with Chocolate Grape. Technical assistance built into cost.

Introducing plagiarism online software “Identikit”. There is a small cost £35 associated with this service that the applicant will need to meet. New fee structure takes this into account. Some plagiarism and borderline plagiarism has been detected. Human detection of this is limited. The applicant will get a plagiarism report, which can be shared with their mentor if they wish. It is to be submitted with portfolio. Next submission will be trial of this system. Software checks against published work, not other portfolios. Only plagiarism detected to date has been of published works. Cost of having software comparing portfolios is prohibitive.

Annual registration payments to commence from next year (May 2015).

JCGCR (GH)

AVR draft application submitted to PSA over summer. Quick turnaround with substantial feedback. PSA keen for us to submit. Online vote for GCRB closes today. Confident that result indicates AVR supported by majority of GCs. PSA conducts site visits etc. then application will go forward to panel. Should get a relatively quick answer. GH confident that application will meet standards.

Continue to work with HPC. Genetic Alliance UK have been invited to HPC to discuss potential statutory regulation in future. Government not planning to extend statutory regulation for other professions until relevant processes in place. MM asked if AVR is an end to consideration of statutory regulation. GH replied that advice so far indicates this is not the case but AVR is only practical option at present.

Consensus of thanks for all work so far on this.

Lead GCs

Working models (GB) already covered above to certain extent. Role of telemedicine? Role of telephone calls. GBrice suggested St George’s use telephone calls frequently. Can be useful if patients having chemotherapy. Telephone clinics regularly scheduled (both GCs and consultants). Half hour slots. PH described Liverpool telephone clinics. Use of headsets, 4x hour slots. Highlands also use telephone clinics. Aoife raised point about needing dedicated setup for telemedicine (“Lync”). GBrom wondered if this is secure eg. Skype. It is secure, but it is not Skype. Only used between professionals at present but it is being scoped for use with patients. VW described consideration in Cambridge of using video clips to be used on website to provide patients with information ahead of a clinic. PM raised example of HD predictive testing website example from Canada. Could we integrate this into the Sharing Good Practice work? ‘Innovative Practice’, consider including on newsletter.

Nottingham looking into using texts. Eg. patient texts to say attended for scans, investigations etc. “Flo” system.

GCTP (JT)

See Anita’s notes. In June, trainee day attended by 21 band 6 trainees. Very successful. Not all were AGNC members. They were encouraged to join AGNC if not already members. 15 band 6s, 4 Annex Us, others did not complete form. Opportunity to share practice. To put on a further such day. CH asked if there was any consideration of why some trainees were not under the support of the GCTP. CD suggested that we should keep encouraging them. JT noted that the learning contracts fit very well with the registration process. She reiterated the flexibility of the approach of GCTP. Some of the AGNC New GC group will have attended this meeting.

Workforce planning (AB)

Questionnaire 2014. AB thanked the leads for completing this survey. 32 questions completed in Oct-Nov 2014. Slides with data presented. VW asked how we are going to ensure the retiring GCs are replaced. Around 10% of profession retiring within 5 years. MM pointed out that Manchester and Cardiff train 10-12 GCs per year. She sees limiting factor as training posts. Gap in workforce at band 7 level. LB suggested that we did not measure proportion of GCs working part time. This is fluid. LB pointed out how difficult it is to obtain representative data around workforce planning. CP reported two thirds of her workforce work part time. LB thanked leads and encouraged any outstanding returns to be submitted.

GEL and 100K genomes (LB/AM)

LB presented context of 100K genomes project (see slides). Devolved nations may be able to take part but may be asked to contribute financially. LB invited thoughts on the three options presented: continue to go it alone, align with clinical scientists (retaining say over training and competencies), develop 3-year training programme for GCs (with less alignment with clinical scientists). HEE will not fund our current training programme. CP reminded group of role of HEE: they commission workforce planning for English NHS. AM suggested that it is pivotal to come under HEE umbrella. She wondered if GCs were suggested to come under umbrella of clinical scientists. GH suggested that GCs would potentially be regulated by same body that regulates clinical scientists. Would GCs become a subgroup of clinical scientists? CP suggested opportunities and risks presented here. PH asked if any of the clinical scientist groups are patient-facing. This is not clear. GH suggested HEE may fund a three year training programme for GCs for the duration of 100K genomes. What would come thereafter is unclear.

What does it mean for the devolved nations? MM raised point that clinical scientists in Wales are funded by a separate, smaller, pot of money. CP suggested that non-English universities could apply to provide a GC training programme. MM concerned that Cardiff university cannot apply to bid for MSc Genomic Medicine. She felt it would be good for students to be funded for training but concerns that workforce would be funded to provide for needs of English NHS, not devolved nations. Also concerned about what will happen after 100K genomes project.

Diane Stirling felt that the HEE funding model for GC training might encourage the education boards in the devolved nations to support their GC training. AM suggested that the MSc curriculum will need to develop to include genomics. CP suggested that more counselling skills (eg. therapeutic) could also be integrated potentially, not just the scientific content. VW pointed out that genetic counselling has never stood still. Always evolving and extending role. GBrom felt this was more of a step change that a progression. CP pointed out that the GEL/HEE timescales are extremely tight.

What about training for current workforce? LB suggested that higher level training might be made available to existing workforce.

AM asked when a collective decision needs to have been made by. LB suggested there will be a further meeting in December (19th, with Sue Hill) about this. We may need to be working with HEE on this from January 2015. CP suggested that Sue Hill requires a commitment to take to the Secretary of State and to HPC. MM suggested that if we resist these changes there is a risk that GCs may be steamrolled.

GBrom suggested consensus from her department was that many people will opt to study modules from the MSc GM rather than the whole thing.

CP suggested we could develop a 3 year training programme but consider options during the course of this development. GH contacted Christine Braithwaite and she explained that the Academy of Healthcare Clinical Scientists have various categories of regulated professional groups. Could we work with the AHCS, therefore, on this? LB suggested considerable risk associated with option 1 (going it alone). GBrom asked if funding for training was time-limited. LB suggested that without Clinical Scientist alignment the funding would be uncertain after 100K genomes. GH felt that there would have to be a very convincing reason for HEE to cease funding for training GCs at end of this period. CP suggested that HEE/GEL are not interested in the detail of how we work or are trained ie. it is our responsibility to work out the detail. MM suggested that this could be about fitting GC competencies into clinical scientist structures.

VW suggested that changing the funding of training would improve access to the profession in terms of representation. PH voiced concerns over losing “counsellor” in title, as it is an important part of role. CP suggested that we had been given choice of aligning with either counsellors and psychotherapists or clinical scientists. MM suggested looking carefully at the clinical scientist groups. GH suggested a wide breadth of professionals align to the clinical scientist groups (audiologists, perfusionists, biomedical engineers). MM suggested that if they have safeguarded their NHS roles in this way then perhaps GCs should too. LB suggested that GC title would likely be protected within the NHS but perhaps not outside. SK suggested that there may be some kind of grandfather clause that could be incorporated as part of negotiations. LB confirmed that RGCs would be carried with them in this way.

PM asked about representation and at what level and what options would be presented to the AGNC membership. Generally agreed that too much unknown to discuss with the wider membership at the moment. CH wondered if there should be a vote, given that there was recently a vote on AVR. CP suggested this is more about training than regulation. LO suggested that there were anxieties around the fast pace of potential changes. HM suggested that she would like to share with her team the fact that AGNC is discussing this matter. Some concern about those entering the current MSc programme now or in the near future. Need to ensure that they are not disadvantaged. JT raised point about students requiring placements in genetics centres and wondered how this will be decided.

Consensus that details largely unknown at present but AGNC and associated representatives are a strong team for representing the profession at HEE level. LB clarified that MSc Genomic Medicine is not a replacement for GC training and not aimed at training GCs. CP suggested important for managers to ensure existing workforce have CPD in genomics.

Workforce training (AM)

AM has access to Wellcome Trust training team. She asked if they would help us as GCs upskill in genomics. Approached, CP, GH and Heather Skirton about putting on a course for experienced GCs (on 2nd/3rd July 2015 at Sanger Institute, Cambridge) for this purpose. US GC, Kelly Ormond, to come over to help train. To be heavily subsidised by Wellcome Trust. AM has also asked HEE about funding, too. Price envisaged to be £100-£200 for two days. AM to email a flyer. Currently 40 places. Residential. May be repeated if successful. Opportunity to experiment with genomic data, role play etc.

AM raised issue of GEL, who have put in a REC to perform opportunistic screening. Each time a sequence is done, they are proposing not just answering the clinical question but at same time looking at list of other variants associated with disease. On opt-in basis. AM feels the potential for referrals to clinical genetics is high. Could be parents in trios rather than children. May also offer couple carrier screening for range of conditions. CP suggested impact will be felt most keenly in local genetics centres. Potential for psychosocial research. Mike Parker has added this to consent forms.

Lead GC issues (LB)

Role of clinical geneticist. GC leads asked to consider this for Gail Mannion. LO stated that her dept has considered this recently. CP suggested GCs deliver 40%, clinical geneticists 50% and registrars 10% of activity. Suggests GCs are an efficient resource. Need to appoint right skill mix. LB raised point that many of the genetic diagnoses will be taking place outside of genetics and therefore there will be a lot of work for GCs to do. VW pointed out that consultant geneticists will retain a large role in phenotyping eg. a good dysmorphologist will have a role to play. CP feels they should develop roles in management of rare diseases.

Governance and incidents (VJ)

Described serious untoward incident involving FH questionnaire. Pt had half completed this and brought to clinic. FH questionnaire went back to admin pile - this was sent to another family by mistake and this was reported. GH responded from JCGCR point of view: she had previously invited contribution of incidents like these so that risk around genetic counselling could be determined for regulatory purposes.

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Most centres using Datix. PH recommended organising incidents by theme and then analyse these themes. LB gave examples of incidents involving ‘to whom it may concern’ letters. It has prompted thought about how to deal with relatives and information passed to them. Also workload issue means not as much time to devote to family communication as would be desirable.

HR issues and flexible working (VJ)

How do other leads manage requests for flexible working. Margaritha suggested that requests can be refused if the service cannot cope. GBrom’s Trust has minimum contract of 15 hours per week. CP has somebody on low annualised hours but has to work three days per week. GBrice described examples of remote working (eg. one day per week from home remotely). GH stated her dept does not allow remote working. Governance issues around taking patient notes away from hospital premises. Many depts have core hours. LO’s dept has clocking in and clocking out, medics exempted. VW’s dept has ‘family friendly’ policy and flexible working.