Full list of members is available on

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1 SCAN UROLOGY GROUP MINUTES Friday 20th September pm Oncology Seminar Room Western General Hospital Edinburgh, EH4 2XU Present Prasad Bollina (Chair) PB Consultant Urological Surgeon, Lothian Lauren Aitken LA Urology Audit Facilitator/Group Administrator, Lothian Lorna Bruce LB SCAN Audit Manager John Brush JB Consultant Urological Radiologist, Lothian Narelle Gregor NG Urology Advanced Nurse Practitioner, WGH Alasdair Innes AI Advanced Nurse Practitioner, Lothian Martin Keith MK Cancer Improvement Manager, D&G Alastair Law AL Consultant Urological Oncologist, Lothian Robert Lester RL Patient Representative, ELPCSG Christina Lilley CL SCAN Modernisation Manager Kate MacDonald KM SCAN Network Manager Jahangeer Malik JM Consultant Urological Oncologist, Lothian Alan McNeill AM Consultant Urological Surgeon, Lothian Rita O Dea RO Uro-oncology CNS, ECC, Lothian Marie O Donnell MO Consultant Urological Pathologist, Lothian Tony Rafferty TR Macmillan National Tailored Information Programme Manager Brian Sibbald BS Patient Representative, BCSG Cathie Sturgeon CS Consultant Clinical Scientist, Lothian Apologies Sandra Bagnall Yvonne Chapman Gill Davis Maureen Devaney Roland Donat Clare Gorman Julian Keanie Steve Leung Scott Little Param Mariappan Alan McLaren Duncan McLaren SCAN Patient involvement Manager SCAN Cancer Audit Facilitator, Fife Advanced Nurse Practitioner, Lothian Uro-oncology CNS, Fife Consultant Urological Surgeon, Lothian Service Manager- Cancer and Palliative Care Consultant Urological Radiologist, Lothian Consultant Urological Surgeon, Lothian, Fife Uro-oncology CNS, ECC, Lothian Consultant Urological Surgeon, Lothian Uro-Oncology Specialist Nurse, Borders Consultant Urological Oncologist, Lothian Full list of members is available on Tel: (0131) E: lauren.aitken@luht.scot.nhs.uk F: (0131) Page 1 of 6

2 Item 1 Minutes / Matters arising The December meeting minutes were discussed due to full agenda but they have been circulated on a number of occasions with no amendment requests so now considered ratified and a true account of discussion- they are now available for viewing on the SCAN website. PB welcomed new members: Rob Lester (Patient representative), Lorna Bruce (SCAN Audit Manager) and Christina Lily (SCAN modernisation manager- previously Tom McCarthy in post). 2 SCAN Progress & Updates Tailored Information for the People of Scotland (TIPS) Launch TR summarised objectives and functions of TIPS (Tailored Information for the People of Scotland), demonstrating the wide variety of tools available to adapt content and presentation of information generated. Each page follows a longitudinal layout to enable all areas to be viewed on all mobile and tablet devices also e.g. flow charts. TR will be in post for at least 3 years to further develop and maintain site content and aim to move towards inclusion of all long-term health conditions. Raising awareness using wallet cards, facebook, twitter and agreement to place a direct link to NHS Inform on library computer desktops in many areas. JM suggested accessibility could be further enhanced by having either information kiosks or WiFi access in patient waiting areas. KM updated that SCAN is considering touch screen kiosk introduction. MK advised that Dumfries provided these kiosks in 2007 but at that time found that those who used then were able to do so at home. The use of volunteers to assist in the waiting areas would increase usage by those less computer literate (e.g. silver surfers group could have a focus session on teaching/ cancer information). AM Congratulated the TIPS team for the achievements so far. He suggested that a link to specific consultant information would be useful (e.g. in England there is a website for each Health Board). TR agreed that this would be possible but the information contained would need to be updated and maintained locally. KM reminded the group that the website links to each cancer network site which would enable management of clinician information and virtual tours possible. Overall the site is considered a very valuable resource for patients and clinicians to ensure accurate and appropriate information is available. It was recognised that the main hurdle now will be how to reach patients at the right time and in the most comprehensible which is accessible to a variation of abilities and limitations. Page 2 of 6

3 Patient and Carer Group Feedback BS has been elected as group chairman and will be the communication link between these groups. Firstly on behalf of group members he recognised and gave thanks to Mike Shaw for his input and commitment as a patient representative over the course of his membership. Karen McNee from the James whale fund attended the group In June and highlighted the upcoming Kidney cancer Scotland (James whale) patient day on 13 th November in Edinburgh. BS is optimistic that kidney cancer support group will form soon. Sarah Scott has began a McMillan and UCAN (Urological Cancer Charity) funded post in a project exploring getting patients back to work after treatment. Due to recent interest in PSA screening he asked if the patient group had expressed a stance on this. RL advised that GP s were issued with the PCRMP 3 years ago with age specific cut-offs of 3,4 & 5 ug/l however until recently the IT systems used levels 3 or 5. A reduction in the number of out patient referrals in general is expected with this addition, particularly a reduction of inappropriate referrals. PB thanked the patient group for their continued commitment and input. BS will feedback to the December primary care group meeting. Full body MRI as staging for prostate cancer MK asked the SCAN urology group to discuss if a full body MRI would be an adequate alternative to MRI prostate and full body bone scan when staging prostate cancer patients living in Dumfries & Galloway. Presently patients have to travel considerable distances (150 miles to Carlisle) for bone scans so enquired if service can be improved by offering a single scan in Dumfries. A nuclear medicine department is considered unviable in Dumfries due to various transport and storage issues. JB explained that whole body MRI is arguably superior to a bone scan but depending on the MRI model, patients would still need a multi-parametric MRI of the prostate (1.5hrs) so there is still likely to be a need for two separate appointments. If the MRI has enough capacity, is technically modern enough and has the specific coils (Peripheral, vascular, head and neck) then this will be a very good test. As this is not a well documented investigation there would need to be strict quality control monitoring plans in place and patients would need uro-radiology review after appropriateness is assessed at the MDT. OUTCOME: It is acceptable for Dumfries and Galloway patients to undergo Whole body MRI instead of Whole body bone scan in addition to multi-parametric pelvis/prostate MRI if criteria for quality and capacity are met. Page 3 of 6

4 Prostate cancer UK funding/ TCAT Prostate cancer UK has supported proposals from Lynn Jackson for a specialist nurse to manage Lothian Active Surveillance patients as well as a uro-physiotherapist for post-prostatectomy men. Initial posts funded for 1 year and are currently at the recruitment stage. Transforming Care After Treatment (TCAT) is a national initiative which aims to improve care after treatment in at least 1 of 5 core areas: Holistic Needs Assessment End of Treatment Summary End of Treatment Review Cancer Care Review in Primary Care Risk Stratified Follow Up Each bid must demonstrate potential to improve links with primary care and continued support after treatment and will amount to 5 million over 5 years. It is supported by McMillan and applications will be vetted by LCPIG. The current urology proposal is base on the needs of post-prostatectomy patients. Both short- and long-term assistance could be managed in a more encompassing way e.g. provision of incontinence pads or improving access and availability to specialist nurses, physiotherapists which could help patients to return to normal life as rapidly as possibly. Peter McLoughlin suggested that this bid be teamed with a proposal put forward by Gillian Knowles which involves all cancers with the aim of strengthening the project bid. A pilot is being considered on post-prostatectomy patients which may be started after talking to patients. The LCPIG will meet at the end of September to decide which bids need further development with a decision from McMillan on which 10 bids to finally support expected to follow. Proposals from social care will be invited in RL added that Fife has recently appointed a link nurse which should be useful in guiding what the best approach should be for Lothian. Cancer Modernisation Fund Bid Progress/ PSA follow up PB outlined the existing post treatment follow up and active surveillance/ monitoring protocols. Funding has been approved to develop a PSA monitoring system. CS has been working closely with the GP lab liaison group and Lothian laboratories to identify possible links. So far, IT systems in use are the only stumbling block but they are generally optimistic about the progress- a Trak request for assistance has been submitted. The follow- up service bid is a joint effort between service managers in oncology and urology and has reached the stage of looking to appoint a project co-ordinator/ manager for a 1 year post. The group discussion led to some very helpful suggestions for overcoming the IT complexities by examining current follow up models (e.g. for ovarian cancer) and databases (e.g. Renal View- for kidney transplant patients to self monitor or for liver patients ) Compatibility between GP and hospital systems should be explored as this is likely to allow sustainable and manageable patient follow up. Page 4 of 6

5 NPF - Update on Robotic Surgery for Prostate Cancer AM informed that there are approximately 33 Da Vinci robots in use in England. Scotland has been cautious to agree on the practicality and clinical benefits which installation would involve. The National planning forum put an embargo on using robotic prostatectomy until it had the opportunity to explore the possible benefits/ limitations of introducing this to NHS Scotland and has now confirmed the following recommendations: 1. NHS Scotland should move from open surgery to laparoscopic surgery in higher volume centres ( cases per surgeon per year). The chief executive will be responsible for enforcement. 2. Consideration should be given to the CSO proposal for a research project into robotics (meeting 26 th September where a subgroup is likely to be formed) UCAN is looking at funding a local robotics service in Aberdeen and Prostate Scotland began a fundraiser to appeal for a national Da Vinci robot. Charities are raising money while the NPF further considers the clinical picture. SCAN patients can have a prostatectomy in Lothian and Fife but due to volume issues if management are discussing what proposals could be made and what impact the QPI s will have. The question would need to be raised on how ethical it would be to refuse a patient and open procedure with an experienced surgeon in favour of an unproven/ less experienced minimal access surgeon in order to comply with guidance. The knock on effect in main centres will also need to be explored e.g. pathology, radiology and follow-up responsibility. A service level agreement of funding would need to be guaranteed to each of these departments per patient to deal with increased patient numbers. Quality Performance Indicators Update LA gave an overview of current progress and initial results of QPI collection in SCAN: Renal QPI provisional data has been analysed for Lothian and Fife and a SCAN comparison will be circulated after Borders and Dumfries data has been received and clinically signed-off. Areas of concern so far relate to the recording clinical staging (QPI 3 & 6 are particularly sensitive to not recorded clinical staging which would result in significant failure) which means that while patients will be included in the denominator, they may not be included in the numerator and hence lowering the performance against the target regardless of actual pathway. It was agreed that while some common sense must be used in deciphering staging, due to the strict data definitions around audit staff not deducing stage from description that clinicians should always aim to clearly label patients with a pre-treatment ctnm. It was also thought acceptable for the not recorded patients from 2012 to be forwarded to the clinician for their staging amendments. The MDT should be the central collection point but increasing patient numbers (from throughout SCAN), job plans which do not include time for MDT responsibilities and inadequate facilities within the meeting room have collectively led to poor standard recording. JB added that he has no problem in reviewing staging each patient if a list is provided early enough pre-mdt. Prostate cancer QPI s will be provisionally analysed later this year but there is a similar issue with clinical staging though there should not be quite so big an effect as with renal patients. Page 5 of 6

6 Bladder cancer QPIs have been drafted and sent out for engagement. The first version of the corresponding dataset has also been circulated. The first core development group for testicular cancer was due to meet on 11 th October but has been deferred to 14 th November. Generic and patient experience QPI s are in progress. It is not yet clear who and how each will be collected and analysed. The patient experience QPI s is available online ( Group/QPI/CancerPatientExperienceQualityPerformanceIndicator ) will be circulated to the group for review- particular feedback on collection mode and result relevance would be welcomed. The national QPI development is near completion for urology so it would be helpful to have a regional governance and action process in place to deal with any issues raised. SCAN Group Workplan ** Insufficient time so this item has been deferred. Clinical Trials AL provided a list of current urological cancer trials available in the Edinburgh cancer centre. The clinical trial group is held quarterly and attendance is encouraged. The next meeting will be held on 4 th October, 14:30-15:30. 3 AOB Next Meeting: 6 th December Meeting Dates: April, September, December- dates TBC. Page 6 of 6