Chair: Mr Paul Wilson (PW) Meeting of the SWAG Soft Tissue Sarcoma Site Specific Group (SSG) Tuesday, 5 th June 2018, 10:45-13:30 Engineers House, The Promenade, Clifton Down, BS8 3NB This meeting was sponsored by Kyowa Kirin and PharmaMar NOTES (To be agreed at the next SSG meeting) ACTIONS 1. Welcome and apologies Please see the separate list of attendees uploaded on to the South West Strategic Clinical Network (SWCN) website. Consultant Radiologist Ed Walton has recently been appointed to the team in NBT, and was welcomed to the group. 2. Review of previous notes and actions As there were no amendments or comments following distribution of the minutes from the meeting on 5 th December 2017, the notes were accepted. Recruitment of a Sarcoma Fellow: The agreement for Registrar Ahmed Emam to join the team as a Clinical Fellow has since been overturned to prioritise continued educational commitments. Links with radiologists within the network: Communication with the network radiologists had initially been scheduled to occur after ratification of the management of lipoma pathway by the British Sarcoma Group; this was still in progress and, in the interim, the pathway can be used as the SWAG protocol. Contact has already been made with colleagues in Taunton and Bath to work through the detail. Brathaban Rajayogeswaran (BR) will be the main contact for overall sign off of the pathway now that Mike Bradley (MB) has retired. Dedicated physiotherapy time: The Business Case for a Band 6 0.8 WTE physiotherapist to attend clinics, pre-hab and monitor/communicate post-op rehab, has been approved by Plastics Manager Casper Fons, and is awaiting final sign off by senior management. Catherine Neck is also meeting with physiotherapist Kirsty Derrick to look into improving and streamlining patient rehab pathways both pre & post op. It was noted that there was a significant section in the sarcoma service specification on the requirement for dedicated physiotherapy; approximately 70% of lower limb patients require rehabilitation. BR CN Audit of cases coded within MDT: The coding system developed by MB to streamline MDT discussions has not been used consistently enough for an audit to be warranted at this time. Benign lipoma referrals: A letter has been sent to Helen Dunderdale (HD) from Thomas Wright about a patient referred to the Sarcoma MDT with suspected Page 1 of 8
bursitis. This has been sent to the Cancer Manager at RUH Bath for further investigation, and will be followed up in the near future. SSG members are invited to forward information on inappropriate referrals to HD so that the issues can be escalated to Cancer Managers or Commissioners where relevant. Implementation of Cancer Research UK MDT recommendations: The feasibility of holding a pre-mdt triage meeting had been proposed at an earlier meeting. A fourth Consultant has since been appointed, and clinics are being reconfigured accordingly; alternative solutions may be more appropriate. A regional meeting of Clinical Cancer Leads will be held on Monday 16th July 2018 to define a loco-regional approach to MDT reforms; Adam Dangoor (AD) will represent the group and results will be fed back at the next meeting. AD Thoracic surgery MDT attendance: Attendance to date has not been possible due to clashing with a Lung MDT, but it may be possible to attend via teleconferencing in the near future. The relevant patient discussions can be scheduled to take place within a specific time slot to assist with this, which is the process for discussion of urology patients. Sarcoma Clinical Studies Group (CSG) representation: Consultant Oncologist Paula Wilson has stepped down as representative at the CSG; Gareth Ayre plans to express an interest in the role once requests for new members are advertised. GA Rearrangement of radiology slots: Although the number of actual sarcoma diagnoses has not increased, the number of referrals into the service continues to rise. The resulting pressure on radiology capacity requires revision of the current allocation of slots, taking into account the timing of additional diagnostic clinics, and the musculoskeletal workload. The service requirements and related costs are being discussed with Assistant General Manager for Core Clinical Services, Sean Fry. The need for ultrasound slots instead of x-ray will be clarified. It is hoped that management will approve additional slots every other Monday to coincide with the sarcoma clinic. Across site patient experience survey: Results from the most recent patient experience survey from NBT will be circulated with the notes. Positive feedback had been received; the main focus for improvement will focus on the provision of postoperative information to ward staff to give out to patients on discharge. 3. Clinical opinion on network issues 3.1 Service reconfiguration It is planned to reduce the number of benign cases booked into the Tuesday morning MDT Clinic. When the 4th Consultant Plastic Surgeon has joined the team, the clinic will be run solely by Consultants, rather than in collaboration with the Registrars, who will still attend for educational purposes. This should increase efficiency and improve the patient experience by providing continuity of care; repeat consultations will be arranged with the same designated Consultant wherever possible. Page 2 of 8
The number of clinics will also increase, with an additional diagnostic clinic on a Monday afternoon, and follow up clinic on Thursday. Two Consultants can now be rostered on to each operation list to ensure that theatre cases can be scheduled throughout the year. Major cases will be undertaken with 2 Consultants at all times, reducing stress and increasing efficiency, and there will be more flexibility for releasing consultants to work across organisations, for example, to assist with thoracic reconstructive surgery in the Bristol Royal Infirmary. The Programmed Activity (PA) available for these cases will be investigated by Consultant Thoracic Surgeon, Doug West (DW). DW Triage of referral is now nurse lead, although there are issues with the provision of administrative support; Rebecca Peach (RP) is due to go on maternity leave in the near future. A consultant will be required to triage when Christine Millman (CM) is not available. There is provisional agreement with the Ionising radiation Medical Exposure Regulations (IRMER) Board to enable the CNS team to request scans once all processes are clarified. Due to the increasing number of post-operative cases, Consultant Clinical Oncologists Paula Wilson (PaW) and Gareth Ayre (GA) plan to organise a dedicated oncology clinic list for fibromatosis, with ad hoc surgical input. It would ideally occur on one Tuesday per month. Assistance to identify the correct patients would be required from the CNS team. PaW/GA 4. Service development 4.1 Genomic Medicine Centre (GMC) update Please see the presentation uploaded on to the SWCN website Presented by Christopher Wragg (CW) The West of England GMC received their first results for cancer patients over the last few months. Many interesting results have been returned for patients in the rare disease arm of the project, which is closing to recruitment in the near future. At a meeting in December 2017, an update was provided on national recruitment to date as documented in the presentation. The recruitment of cancer patients is currently under target due to the complexities involved in processing fresh tissue. Ultimately, the aim would be to open the pathway in all hospital sites for each disease type. National results have shown that 65% of cases processed to date have gene variations with actionable significance. A process of re-procurement commenced in December 2017 aiming to establish seven nationally commissioned Genetic Laboratory Hubs (GLH) by October 2018, when it is planned to transition whole genome testing from a project to standard care in the next 5-10 years. A tailored directory of molecular markers that can be used to inform diagnosis, Page 3 of 8
prognosis, and treatment decisions, will be developed and opportunities for clinical trials will be explored. Areas where further evidence on whole gene sequencing is required will be identified and patients consented accordingly. It is hoped to reduce the turnaround time for results to 20 days. Online training is available; for more information on this and any other queries, please contact CC-C: 07732 561067, Ubh-tr.wegmc@nhs.net. Recruitment to the project will remain open until September 2018. It is likely that sarcoma will be chosen as one of the cancer sites for mainstream testing. A GMC pathway has been set up by Chris Millman (CM). There are limited resources to assist with the project, which includes a lengthy and complicated consent process, which involves explaining that results might not be available for some time. A Genetic Advisory Board will analyse the results for biomarkers so see if they can inform treatment decisions. It is hoped that new biomarkers will be discovered. MDT members are invited to express an interest in attending the Board when relevant results are due to be discussed. Future funding and staffing for continued recruitment to the project remains unclear. CM plans to recruit their second patient this week, but if the test is to be mainstreamed, the processes involved need to be funded and streamlined. 5. Quality indicators, audits and data collection 5.1 Current audits Progress on the following current audits will be revisited at a future meeting: Management of lipoma Sarcoma referral processes. A case review on the management of a high grade soft tissue sarcoma of the thumb has been accepted for publication in the Journal of Plastic, Reconstructive and Aesthetic Surgery. Two other case reviews for publication are underway, one of which relates to mediastinal angio-sarcoma, and another on a large chest wall reconstruction; this will be sent to DW to proof read. Junior medics will be encouraged to submit a poster to the British Sarcoma Group on the chest wall review; the deadline for submission has yet to be confirmed, but it is usually at the end of the year. Information will be sent out after registering an interest in attending the conference via this email: conference@britishsarcomagroup.org.uk There are numerous paediatric oncology cases that would be of interest to prepare for publication, however there are no registrars to assist or capacity for the Paediatric Consultants to do this without administrative support. Page 4 of 8
6. Clinical guidelines 6.1 Mortality and morbidity case reviews Case 1: Large recurrent tumour excised from buttock, previously closed with free flap and then saline expander, resulted in an urgent admission requiring a transfusion and repeat surgery. Lessons learned: It was concluded that the management was appropriate given the complex reconstruction of the post-surgical defect. The complications were noted to have occurred after commencement of intense exercise. Case 2: Large pelvic /thigh tumour invading femoral nerves, with flail leg. Initial plan was for pre-operative radiotherapy then surgery, but changed to surgery due to severe uncontrollable pain, to see if nerve compression could be released. The combined operation with vascular went well, but wound dehiscence occurred, resulting in flap reconstruction, then a further debridement and re-suturing. Flail leg persisted, residual tumour remained, and pain was reduced. Lessons learned: It could have been beneficial to scan again just prior to surgery, although the decision to opt for surgery first would not have been altered by the additional scan as, despite finding that the tumour could not be resected completely, surgery would have still been the best option for improving the symptoms of severe pain. Radiotherapy prior to surgery would not have improved neurological symptoms, but would have increased the possibility of complications post-surgery in the irradiated field, and it was unlikely that it would have been tolerated for 5 weeks. It was concluded that management with surgery for palliative control was appropriate; palliative radiotherapy remains a treatment option. It was noted that surgical risks would be halved when two Consultant Plastic Surgeons are available for complicated cases. 6.2 Highlights from the 2018 British Sarcoma Group An interesting session was held on the psychology of cancer. Sarcoma specific Quality of Life tools have been developed for patients post-surgery, and it is possible that a related National Institute for Health Research (NIHR) badged follow up study may commence to look at post-operative monitoring and patient information. The efficacy of olaratumab combined with doxorubicin in comparison with doxorubicin alone for first line treatment was shown to improve overall survival rates. Page 5 of 8
Configuration of services for retroperitoneal sarcoma was discussed. Collaborative working with the Peninsula may be required. Further information will be circulated when available. A virtual group of oncologists is due to convene in the next few weeks to agree national systemic treatment protocols. The ultrasound screening protocol, drafted by Mike Bradley, will be circulated for final comments prior to publication in the near future. This contains information for General Practitioners (GPs), and will be shared with the Cancer Alliance Macmillan GPs. AD/HD The next BSG conference will be held at the Royal College of Physicians, London, 27 th to 28th February 2019. SSG members from all disciplines are encouraged to consider subjects for posters. Funding from the Bristol Sarcoma Service Account is available to pay for attendance by the nursing team. Requests for funding attendance at events for educational and research purposes can be made to the MDT. Clinical Nurse Specialist Chris Millman has undertaken the role of Chair of the National Sarcoma Forum for Clinical Nurse Specialists and Allied Health Professionals. 7. Living With and Beyond Cancer Please see the presentation uploaded on to the SWCN website Presented by Catherine Neck (CN) The National Cancer Transformation Board has notified the South West Cancer Alliance that Transformation Funding will be reduced to 75% for Quarters 1 and 2, due to the recent creation of a rule that links funding to 62 day Cancer Waiting Time (CWT) performance. LWBC activity is being measured for prostate, breast and colorectal cancer sites. This initiative (which involved implementation of the recovery package), will be made available for all cancer patients, with generic Living Well days being held as an alternative to site specific events. Transformation Funding has been used to recruit 25 Cancer Support Workers (CSWs) across the SWAG area. The sarcoma service in NBT has been allocated one day per week administrative support from a CSW. There will also be additional access to a Band 7 physiotherapist, a Band 4 physiotherapy technician, and a Consultant Clinical Psychologist who has been appointed to provide Level 2 psychological training programmes for staff across the region. UH Bristol has employed an additional dietician. The aim is to provide a cohesive Allied Health Professional (AHP) service to sarcoma patients between Trusts. Any other LWBC needs identified can be escalated to the SWAG LWBC working group. LWBC activity is regularly reported back to the national team to provide proof that funding for this purpose is being used appropriately, to ensure continued receipt of the funds. The slides will be circulated. HD Page 6 of 8
8. Patient experience 8.1 CNS update The South West Nurses Forum was held last month, with representatives attending from Plymouth, Exeter and Wales. This will be repeated three times a year, initially focusing on coordination of pathways between centres. Results from the regional work will be presented at the NSF National Study Day in Birmingham in October and at the next BSG conference. Provision of cover for maternity leave for the CNS team in NBT will be clarified by Lead Cancer Nurse Ruth Hendy (RH). RH It is hoped to organise additional nurse led clinics, but CNS numbers would need to increase to 2 or 2.5 WTE before this can be achieved. Assistant General Manager Casper Fons was consulted about this, and has confirmed that additional funding to expand the team is not available at present. There is disparity in the number of CNS staff and delivery models across the region. Royal Devon and Exeter have a team of 4, Plymouth have recently appointed their first Sarcoma Nurse Consultant, Cardiff have appointed their first CNS, who covers both surgery and oncology, and the CNS in Swansea (Band 8a) runs nurse led clinics. The CNS workforce was noted to be understaffed across all cancer sites at present. 9. Research 9.1 Clinical trials update Please see the presentation uploaded on to the SWCN website Presented by David Rea (DR) Recruitment figures (sourced from EDGE), open trials, and trials in set up are documented within the presentation. The national recruitment target for sarcoma is currently 0.1 per 100,000 of the population served. The West of England has met the target for 2017/18. Recruitment to time and target for cancer studies has improved, resulting in a slight increase in income to the network from the National Institute for Health Research (NIHR). The metrics for measuring performance are being revised. It is thought that these will look to recompense research activity according to the burden of disease type. Principal Investigators will be invited to use the research section of the SSG meetings to launch new trials. Information on open trials and those open to new sites is documented in the presentation. SSG members are to contact Portfolio Facilitator Jessica Bartlett if they are interested in opening any new trials, who will make enquiries on your behalf: jessica.bartlett@nihr.ac.uk Page 7 of 8
At the Bristol Royal Hospital for Children, Euro Ewing 2012 was noted to still be open. Three patients have been recruited to the new trial for first line treatment, 2 of which have been sent for proton therapy off trial; data collection on these patients can still continue. This will be the same with the new rhabdomyosarcoma protocol when this opens. After some initial delays, the reecr trial for relapse patients is also now open. The new international rhabdomyosarcoma protocol for first line and relapse is currently being drafted. The Chief Investigator is based in London. It should be available in November 2018, and will look at pre versus post-operative radiotherapy. 10. Any other business Referral criteria for the Complex Cancer Late Effects Rehabilitation Service (CCLERS) in RUH Bath will be circulated. HD Peer review self-declaration is due to be completed in the next few weeks. CNS workforce issues will be highlighted. It was noted that two week wait referrals were still being received without an ultrasound, and the service was still receiving a vast number of inappropriate referrals. Macmillan GP, Nicola Harker (NH) will see if it is possible to hold a SWAG wide GP masterclass to focus on rare cancers, including paediatric oncology and sarcoma. Representatives from the SSG will be invited to speak about their particular area of expertise; Macmillan will be approached to fund the event. NH Mike Bradley (the longest serving member of the group), has formally retired, but will return on reduced hours after 7 weeks. Date of the next meeting: Tuesday 9 th October 2018 -END- Page 8 of 8