SCAN Gynae Group Thursday 5 th September 2013

Transcription

1 DRAFT SCAN Gynae Group Thursday 5 th September 2013 Edinburgh Breast Unit Seminar Room with videolinks to RIE and VHK MINUTES Present Sandra Bagnall Camille Busby-Earle Dawn Cole Maude Donkers Phillip Dutton Scott Fegan Nidal Ghaoui Panos Giamougiannis Charlie Gourley Christina Lilley Melanie Mackean (Chair) Sheena Mackenzie Jo McGinty Cameron Martin Vicky Muir Fiona Nussey Tzyvia Rye Jacqueline Stevenson Alison Stillie Alistair Williams Mark Zahra Apologies Awatif al-nafussi Lorna Bruce Isobel Clements Sarah Court Kate Macdonald Queenie Menezes SCAN Patient Involvement Manager Consultant Gynaecologist, NHS Lothian Gynae MDM Co-ordinator Lead GP, NHS Borders Consultant Gynaecologist, NHS Dumfries & Galloway Consultant Gynaecological Oncologist, NHS Lothian/NHS Fife Locum Consultant Gynaecologist, NHS Fife ST4, NHS Lothian Professor of Medical Oncology, University of Edinburgh SCAN Modernisation Manager Consultant Oncologist, Edinburgh Cancer Centre SCAN Groups and Communications Co-ordinator Gynae CNS, NHS Lothian Consultant Gynaecologist, NHS Lothian ATSM Gynae Oncology Trainee, NHS Lothian Patient Representative Consultant Medical Oncologist, Edinburgh Cancer Centre Clinical Trials Data Manager Cancer Audit Facilitator, NHS Fife Consultant Clinical Oncologist, Edinburgh Cancer Centre Consultant Gynaecologist, NHS Lothian Consultant Pathologist, NHS Lothian Consultant Clinical Oncologist, Edinburgh Cancer Centre Consultant Pathologist, NHS Lothian SCAN Audit Manager Patient Representative Associate Specialist, NHS Lothian Network Manager, SCAN Consultant Gynaecologist, NHS Borders A full membership list is available on Item Action 1 Introductions, apologies, minutes The Group approved the minutes of the meeting on 23rd May Matters Arising Transforming Care After Treatment (TCAT) As agreed at the previous meeting, two gynae proposals had been put forward. Sandra SCAN Office, Pentland House, 47 Robb s Loan, Edinburgh EH14 1TY T: W: sheena.mackenzie@nhslothian.scot.nhs.uk Page 1 of 7

2 Bagnall advised the group that 14 proposals from across the region had been discussed at the first meeting of the SCAN TCAT Group, revised proposals are due to be submitted by 10 th Sept and the SCAN TCAT Group will then decide which proposals will be worked up into full Expressions of Interest for consideration by the national TCAT Programme Board. Sandra said that Macmillan expect to fund a maximum of 10 proposals from across Scotland in this first phase of the programme. Melanie Mackean encouraged group members to consider putting together bids for future phases of the TCAT programme and Sandra said that, as the regional TCAT lead, she would be happy to answer any queries on this. Peritoneal washings Alistair Williams advised the group that, following discussions at the previous meeting, agreement had been reached about the wording of the statement to be added to pathology reports when peritoneal washings are not received after ovarian surgery. Complex gynae pelvic surgery Melanie Mackean reported that a meeting in June with the colorectal service had been fruitful and that there were plans to hold joint MDMs (multidisciplinary team meetings) monthly on Friday mornings to discuss complex gynae pelvic surgery cases. 2 Wider SCAN Issues Christina Lilley gave group members an update on regional and national developments, including: SCAN Audit Lorna Bruce has been appointed as the new SCAN Audit Manager. An Audit Facilitator will be recruited to take over her work in relation to gynae audit. Generic Quality Performance Indicators (QPIs) The draft patient experience QPIs have been published for consultation (deadline: 25 th Oct). 24-hour Chemotherapy Helpline the service was launched as a pilot in Lothian on 10 th June to give patients at risk of developing side effects from their cancer treatment 24/7 access to advice. Individual Patient Treatment Requests (IPTRs) The Lothian Medicines Management Committee has developed an updated policy for IPTRs which includes contacts for all SCAN boards (copy attached). Patient information will be developed to ensure informed consent. Chemotherapy Repatriation Discussions about repatriation of gynae patients from Lothian to Fife have been constructive. NHS Fife has identified funding for the joint appointment (Fife/Lothian) of a Medical Oncologist specialising in gynae cancer plus one other tumour site. Additional staff (eg cancer nurse practitioners) will also be required to support the service. In addition to allowing repatriation of gynae chemotherapy, the appointments may support acute oncology services in Fife. 3 Gynaecology Issues Clinical Trials Update Charlie Gourley gave an update on gynae cancer clinical trials (copy to follow). Page 2 of 7

3 Rare Gynae Cancers Tissue Bank Charlie Gourley requested views from group members about an invitation from the NCRI Gynaecological Oncology Clinical Study Group to support a virtual tissue bank for rare gynae tumours. The Gynae Group was generally in favour of participating in this initiative and Charlie Gourley suggested that assistance with data management could be offered. Action: Alistair Williams to contact the NCRI Gynae CSG to confirm SCAN s willingness to contribute to the rare gynae cancers tissue bank. Alistair Williams Education Day: 22 nd Nov 2013 Group members discussed the Gynae Group Education Day on 22 nd Nov and were in favour of an all-day, national event. As Pharma presence would preclude patients from attending, it was suggested that unrestricted educational grants and/or endowments might be the best sources of funding. It was agreed that Charlie Gourley should lead on developing the programme for the education day and involve other members of the group as required. Gynae MDM Melanie Mackean presented the results of an audit carried out by medical student Shaunna Anderson which sought to find out whether gynae patients were managed according to the plan proposed at the regional MDM. The audit reviewed the cases of all patients discussed at the MDM during September Key findings: Non core members were most likely to fill in the MDM referral form themselves (11 out of 15) while core members were more likely to delegate this task (16 out of 62). Hospitals with the fewest referrals were best at filling in the referral forms. The majority (93.4%) of the patients were offered the management plan which was proposed for them at the MDM. Of the 4 patients offered a change of decision 3 were due to the MDM form being either incomplete for essential information or presented too soon for the key information to be ready, eg scan results. The majority (61 out of 66) of patients agreed to the plan offered to them. The five patients who declined the proposed plan were from peripheral centres. Key recommendations: The MDM form should be redesigned to encourage filling in of past medical history and the question to be answered by the MDM, particularly for hospitals with larger numbers of referrals. Key patient information, eg staging scan or surgical operation notes, should be available for the MDM meeting discussion. If not available or ready, MDM decisions should reflect that further information may become available. Patient autonomy always has to be respected. There will always be some patients who find the treatment they are offered unacceptable and wish something different. The audit of reasons for patients declining the MDM proposed plan Page 3 of 7

4 should be ongoing to confirm that there is not a regional variation in patient acceptance and the above finding was spurious due to small numbers. It was noted that one of the surgical Registrars is conducting an audit of whether position on the MDM list has an impact on whether the treatment recommended at the MDM was actually delivered. It was suggested that the results of this audit, when available, should be presented to the Gynae Group and that the results of the two MDM audits might be published as a paper or poster. Melanie noted that some patients receive clinical appointments before they are aware of their diagnosis and the appointment letters therefore come as a shock. It was suggested that including patients contact numbers on the MDM form might help to ensure that patients are contacted before the appointment letter arrives and that the new surgical gynae CNS might be able to assist in co-ordination of appointments. Mark Zahra reported that he had conducted an audit of late MDM referrals had revealed that only 22 referrals out of 737 between Jan-June 2013 had been late and discussions about only 2 of these cases had had to be deferred due to lack of information. Melanie Mackean suggested that it would be helpful to rediscuss a sample of MDM cases as a quality control measure. Patient Satisfaction Survey Melanie Mackean compared the findings of the patient experience survey undertaken in 2010 with a repeat survey carried out in She was pleased to note that the overwhelming majority of patients were happy and complimentary about gynae services in Fife and at the Edinburgh Cancer Centre but noted that access to nurse specialist support had deteriorated (from 88% to 63%). Scott Fegan said that he was due to meet the Fife management team on 6 th Sept and that the survey findings would inform discussions about planning for CNS support. It was noted that it remains difficult to give patients a clear idea in advance about what to expect in the way of treatment side effects due to the variability resulting from individual biological differences. Protocols Melanie Mackean said that had offered to lead on revising the SCAN endometrial cancer protocol. It was agreed that and would revise the vulval cancer protocol to include information about sentinel node biopsies. Melanie Mackean advised the group that work was ongoing nationally to develop a protocol and MDM for ovary germ cell cancer and that, as a consequence, the SCAN ovarian cancer protocol would need to be updated. to lead on updating the SCAN endometrial cancer protocol. and to revise the vulval cancer protocol to include information about sentinel node biopsies. Page 4 of 7

5 Melanie Mackean to update the ovarian germ cell national protocol. Melanie Mackean CA125 The group discussed the latest draft of the guidance and pathway for CA125 testing developed in NHS Lothian, noting that there was an outstanding issue to be resolved in relation to flagging urgent suspicion of cancer referrals for ultrasound. Maude Donkers advised that GPs in Borders were able to order urgent ultrasounds and Melanie Mackean said that she would feed this back to the authors of the Lothian guidelines. It was agreed that the final guidance, when available, should be published on the SCAN website and sent to Maude Donkers, for sharing with the SCAN Primary Care Group and arrange publication on RefHelp. Melanie Mackean to feed back to Catriona Morton that GPs in Borders are able to order urgent ultrasounds. Sheena Mackenzie to publish the final CA125 guidance, when available, on the SCAN website and forward it to Maude Donkers, to share with the SCAN Primary Care Group and arrange publication on RefHelp. Melanie Mackean Sheena Mackenzie Maude Donkers Audit The group noted the draft audit report from the Scottish Ovarian Cancer Networks in Nov 2012 and that any comments should be sent to Lorna Bruce. Melanie Mackean highlighted that there was an action for SCAN in the report in relation to documenting residual disease in patients records. It was agreed that should surgical colleagues about this. Group members to send any comments on the draft Scottish Ovarian Cancer Networks Comparative Audit Report 2011 to by Friday 11 th October. to surgical colleagues about documenting residual disease in patients records. ALL It was noted the process of developing Quality Performance Indicators (QPIs) for endometrial and cervical cancer is about to commence and that there will be both clinical and patient representation from SCAN on the national development group. It was noted that a meeting to sign off the 2012 comparative audit report had been scheduled for 4 th November. Melanie Mackean encouraged group members to share the findings of any ad hoc audits at Gynae Group meetings. Group Workplan A revised version of the Gynae Group Workplan , incorporating comments from group members, had been circulated with the meeting Page 5 of 7

6 papers. Jo McGinty gave an update on progress in formalising policies and pathways for drainage of symptomatic ascites (details attached). It was agreed that the Western General Hospital guideline should be shared with colleagues at the Royal Infirmary and St John s, that should look into options for making systems at St John s more robust and that it would be useful to develop a list of first points of contacts on the SCAN website and RefHelp. Jo McGinty to share the Western General Hospital ascites protocol with colleagues in the Royal Infirmary and at St John s. to investigate options for improving arrangements at St John s for drainage of symptomatic ascites and report back to the next meeting. Melanie Mackean and Jo McGinty to draft information on contacts for drainage of symptomatic ascites for publication on the SCAN website and RefHelp for discussion at the next meeting. Jo McGinty Melanie Mackean Jo McGinty Group Chair Two members of the group have expressed an interest in taking over the role of Gynae Group Chair and interviews will be arranged. 4 Any Other Business Fertility issues Vicky Muir highlighted issues around access to fertility advice and arrangements for scans at the Royal Infirmary, where gynae patients have to mix with pregnant women. Sandra Bagnall offered to look into service models in other parts of Scotland and it was suggested that it would be helpful to audit access to advice and support for a cohort of ovarian and cervical cancer patients in SCAN. Scott Fegan and Graeme Walker agreed to review the arrangements for scanning at the Royal Infirmary of Edinburgh and report back to the next meeting. Sandra Bagnall to investigate alternative models for providing advice and support on fertility issues for gynae cancer patients. Scott Fegan and to review the arrangements for scanning at the Royal Infirmary of Edinburgh and report back to the next meeting. Sandra Bagnall Scott Fegan Workforce It was noted that Claire Forrester is due to return from maternity leave on 16 th Sept, interviews for the 2 nd gynae Clinical Nurse Specialist (CNS) post for the Western General are due to be held on 17 th Sept and that the surgical CNS post for the Royal Infirmary has been advertised. Vote of thanks On behalf of the group, Alistair Williams thanked Melanie Mackean for her outstanding leadership as Chair of the SCAN Gynae Group. 5 Dates of Future Meetings TBC Page 6 of 7

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