Supra Network Sarcoma Advisory Group (SAG) Annual Report

London and South East Sarcoma Network Supra Network Sarcoma Advisory Group (SAG) Annual Report 2011-2012 Hosted by Date: December 2012 Version: 2 Review Date: September 2013 London Cancer Integrated Cancer System

SAG Annual Report - Agreement Cover Sheet This Annual Report has been agreed by: Position: Chief Medical Officer (Chair of the Host Cancer Network) Name: Prof Kathy Pritchard Jones Organisation: London Cancer, Integrated Cancer System Date agreed: 10 th December 2012 Position: Director of Procurement Contracting and Performance Name: Mr Will Huxter Organisation: NHS North and East London Commissioning Support Unit Date agreed: th December 2012 Verbal agreement letter in meeting with Donna Chung Agreement by email /12 Position: Co-Chair of the Sarcoma Advisory Group Name: Mr Andrew Hayes Organisation: The Royal Marsden NHS Foundation Trust Date agreed: 12 th December 2012 Position: Co-Chair of the Sarcoma Advisory Group, and lead clinician of LSS MDT Name: Prof Jeremy Whelan Organisation: University College London Hospitals NHS Foundation Trust Date agreed: 12 th December 2012 Position: Research Clinical Lead Name: Dr Beatrice Seddon Organisation: University College London Hospitals NHS Foundation Trust Date agreed (for measure 11-1C-116l): th December 2012 Position: Research Clinical Lead, and lead clinician of RMH MDT Name: Prof Ian Judson Organisation: The Royal Marsden NHS Foundation Trust Date agreed (for measure 11-1C-116l): 19 th December 2012 Sarcoma Advisory Group members agreed this Annual Report on 14 th December 2012 2 OF

1 Introduction This report is a summary of the SAG s achievements, challenges and activities during the period April 2011 to March 2012. However, latest information prior to Peer Review upload has been provided for a fuller understanding of SAG s progress. Achievements: Regular meetings of a highly effective London and South East Sarcoma Network SAG with strong representation from both sarcoma MDTs within the region Expansion of the LSESN communication directory, with sarcoma leads identified at all 63 trusts within the LSESN Revision of LSESN 2WW form and communication with primary care via networks and websites to ensure correct form is used and referrals are sent to appropriate place Effective communication to shared care clinicians within LSESN via email and website updates Continued monitoring of communication and responses received from shared care clinicians within LSESN Work with referring networks in the development of local documentation and ensuring that local documentation is consistent with SAG documentation. Document template produced for use by other networks Continued maintenance of the LSESN website which now includes SAG documentation, and minutes from SAG meetings Patient representation at SAG meetings Successful completion of network wide audit on shared care for chemotherapy and radiotherapy, and retroperitoneal audit carried out and presented by both centres Additional agreements received regarding site-specific shared care pathways, an improvement from last year Continued leadership in sarcoma clinical trials (Phase I-III) with international reputation. Successful joint clinical trials meeting Challenges: Agreement of site-specific shared care pathways by all tumour boards of the 13 cancer networks within the London and South East Sarcoma Network Obtaining required documents and sign-offs for designated practitioner lists Late diagnosis and information provided to GPs Local rehabilitation services 3 OF

2 SAG meetings 11-1c-101l The SAG has met seven times since April 2011 on the following dates: 08/04/2011, 15/07/2011, 14/10/2011, 27/01/2012, 27/04/2012, 13/07/2012 and 19/10/2012. The meeting is co-chaired by Mr Andrew Hayes, Consultant Surgeon at Royal Marsden Hospital and Prof. Jeremy Whelan, Consultant Oncologist, ULCH. Both chairs were present for all seven meetings. The location of the meeting was rotated between the two sarcoma centres. The core membership attendance is shown in the table below. Extended membership attendance can be found in appendix 9 Meeting papers are also distributed to other stakeholders as appropriate. SAG Attendance 2011/12 CORE MEMBERS Meeting Dates Name Position Trust 08/04/11 15/07/11 14/10/11 27/01/12 27/04/12 13/07/12 19/10/12 MDT Lead Clinicians from associated MDTs Prof Jeremy Whelan Lead Clinician, Sarcoma MDT London Sarcoma Service Present Present Present Present Present Present Present Prof Ian Judson Julie Woodford* Lead Clinician, Sarcoma MDT Nurse Consultant, RNOH Royal Marsden Hospital Apologies Apologies Present Present Present Apologies Core Nurse Members from associated MDTs London Sarcoma Service - Apologies - Present Present Present Apologies Cerys Propert- Lewis*/ Rolyn Alvarado+ Alison Dunlop Prof Jeremy Whelan Clinical Nurse Specialist, RMH Clinical Nurse Specialist, RMH Lead Clinician, Sarcoma MDT Royal Marsden Hospital Present - Present Present Present Present Royal Marsden Hospital Present Present Present - - - Co-Chairs of the SAG London Sarcoma Service Present Present Present Present Present Present Present 4 OF

Mr Andrew Hayes Consultant Surgeon Royal Marsden Hospital Present Present Present Present Present Present Present Karen Delin/Kirstene Caine Patient Representative Patient of RMH/Patient of LSS User Representatives - Apologies - - Present Present - Nominated members responsible for ensuring that recruitment into clinical trials is integrated into the function of the SAG Dr Beatrice Seddon Consultant Clinical Oncologist London Sarcoma Service Present Present Present Apologies Present Present Apologies Prof Ian Judson Consultant Medical Oncologist Royal Marsden Hospital Apologies Apologies Present - Present Present Apologies Specialised Commissioning Group Members Linda De Freitas Rare Cancers Manager London Specialised Commissioning Group - Present Present Present Present Present Present Ursula Peaple Rare Cancers Lead London Specialised Commissioning Group - Present - Present Present Present Present Matthew Johnson Senior Commissioning Manager National Specialised Commissioning Team - - Apologies Apologies - - - Hannah Burleton Executive Assistant to the Pathway Boards Named Secretarial/Administrative Support London Cancer - - - - - Present Present * also nominated members responsible for users issues and information for patients and carers + Cerys Propert-Lewis was on maternity leave from November 2011 to November 2012 and was covered by Rolyn Alvarado 5 OF

3 Annual Review 11-1c-102l The Co-Chairs of the Sarcoma Advisory Board Mr Andrew Hayes and Prof Jeremy Whelan met with the Chief Medical Officer for London Cancer Kathy Pricthard-Jones on 5 th December and presented the sarcoma pathway and the work programme to the London Cancer Board. 4 Area Audit 11-1c-114l The SAG agreed to participate in the following audits during the SAG meeting on 27/01/2012: 1. Retroperitoneal Audit (previously presented January to September 2010, agreed update required) 2. Shared Care Audit Retroperitoneal Audit A retrospective audit of retroperitoneal sarcomas managed during 2010 and 2011 was presented at the SAG meeting on 27 th April 2012. The data suggested that the outcomes at the two centres were similar in terms of macroscopic clearance, length of stay in hospital and mortality rates., but that there was a marked discrepancy in volume, with RMH presenting data on 54 patients for 2010 and 56 patients for 2011, and UCH/Royal Free presenting data on 10 patients for 2010 and 13 patients for 2011. The two centres agreed to continue to collect data on retroperitoneal sarcomas although it may not be necessary to present this data in the future. The two presentations can be found in the Peer Review Evidence File. Shared Care Audit Two audits were carried out jointly across the two centres to show shared care that had taken place between January and April 2012 for chemotherapy and between July 2011 and May 2012 for radiotherapy. The chemotherapy audit was presented at the SAG meeting on 27 th April and the radiotherapy audit was presented at the SAG meeting on Friday 13 th July 2012. The chemotherapy audit showed that very few patients are referred outside of the two centres for treatment and if so are usually patients who live a long distance from one of the sarcoma centres. This audit may be completed again next year. The radiotherapy audit focused on the time from surgery to post-operative radiotherapy. The pathway was longer when patients had radiotherapy treatment outside of the sarcoma centre. The shortest and most appropriate pathway for patients receiving radiotherapy outside of the centre was when patients were seen by a sarcoma oncologist at the centre pre-operatively and then referred to shared care centre for post- 6 OF

operative treatment. It was suggested that this should be re-audited again in 2 years to include pre-operative and palliative cases and the designated centres should be asked to provide feedback on our service. The two presentations can be found in the Peer Review Evidence File. The audits were agreed by the Chair of the Network Board 5 Clinical Trials 11-1c-116l The SAG discussed an annual clinical trials report from each of the MDTs. A report to show the list of clinical trial inclusions and recruitment for The London Sarcoma Service (including TYA trials) and The Royal Marsden Sarcoma Service (including TYA trials) was noted and approved by the SAG at a meeting on 19/10/2012 See appendix 7 and 8 for reports. In addition, joint unit research meetings were instigated in 2011 and have been held 3 monthly, after the SAG meeting, to review portfolios, and discuss rationalising opening of trails across the two sites. It has been agreed that for trials where recruitment is likely to be low, best use of resource is to open at just one site, and cross refer patients. The SAG agreed that both centres were recruiting well and that all eligible patients were being offered entry into clinical trails and that current recruitment levels should be maintained. Improvements could be made to the way that clinical trials are reported so that both centres are aligned, for example the UCH report includes data on the number of patients screened whereas the RMH report does not inlcudde this. It was agreed that this will be changed for future reports. It was also agreed that a list of all the open trials within the sarcoma network could be put on the LSESN website. Both centres continue to have their own regular trials meeting. 7 OF

6 Activity Data London Sarcoma Service Referrals: 3041 suspected sarcoma referrals received from January to December 2011 (excludes some UCH referrals) 2545 suspected sarcoma referrals received from January to September 2012 (excludes some UCH referrals) MDT Activity: Number of cases discussed in MDTs, September 2011 to August 2012: MDT TOTAL New 4228 Existing 1748 VTC 1629 BTAP 752* Abdominal 230** Thoracic 114** SUHT 28** TOTAL 8729 * Recording of data since October 2011 ** recording of data since April 2012 Sarcoma Diagnoses: The following are cases of sarcoma discussed at the MDT for the first time in the patient s case history. They are newly diagnosed sarcomas, and do not include recurrences (September 2011 to August 2012: TOTAL Bone 152 Soft Tissue 244 Viscera 11 TOTAL 407 8 OF

Referrals: January to December 2011 Royal Marsden sarcoma Service Number of Referrals Referral Category New diagnosed Continuation of Primary Treatment Referred due to Relapse/ Recurrence/ Mets Benign/ 2nd Opinion Referral Category to be confirmed Grand Total TUMOUR-TYPE Sarcoma 3 101 203 653 305 1445 Grand Total 3 101 203 653 305 1445 MDT Activity: Number of Discrete Patients Discussed in Friday MDT (Sarcoma) 1st January 2011 31st December 2011 Total 1955 Number of Discrete Patients Discussed in MDT (Sarcoma Oncology) 1st January 2011 31st December 2011 Total 5 New patients to Sarcoma Unit 2011 Month Total January 102 February 89 March 99 April 92 May 140 June 113 July 91 August 96 September 125 October 104 November 117 December 127 Total 1295 9 OF

Referral Mapping: Referrals to both centres come from the London and South East Network and beyond, are fairly evenly distributed to the two centres as can be demonstrated from the following referral maps: The Royal Marsden NHS Foundation Trust: Sarcoma Referrals 1.1.12-30.6.12 The Royal Marsden NHS Foundation Trust: Sarcoma Referrals 1.1.12-30.6.12 10 OF

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The London Sarcoma Service: Sarcoma Referrals (including bone sarcoma referrals) 1.1.12-30.6.12 12 OF

7 Cancer Waiting Times Performance The two MDTs collect the agreed SAG minimum dataset for Cancer Waiting Times. All 2WW referrals for suspected bone sarcoma should go directly to RNOH. 2WW referrals for suspected soft tissue sarcomas of limb and trunk should go directly to RNOH or RMH. 2WW referrals for suspected soft tissue sarcomas of non limb/trunk for example head & neck, retroperitoneal, abdominal, pelvic, urology, breast, and skin should go directly to UCLH or RMH. The majority of 2WW suspected sarcoma referrals therefore go to RNOH or RMH, hence the low numbers referred to UCLH described in the table below. The London and South East Sarcoma Networks has agreed referral guidelines which indicate the location for referrals and we are currently revising our 2WW referral form to make this clearer. The majority of oncology treatments for any bone and soft tissue sarcomas take place at UCLH and RMH, as described in the MDT Operational Policy and in the agreed pathways. There a small number of exceptions where oncology treatment is given by other trusts called shared care providers. Designated chemotherapy and radiotherapy departments and practitioners have been agreed as detailed in the SAG constitution document. All surgery for bone sarcoma takes place at RNOH, with the exception of head and neck surgery which takes place at UCLH. Surgery for soft tissue sarcoma of the limb and trunk takes place at RNOH and RMH and for non limb/trunk takes places at UCLH and RMH. Summary of Performance Apr 11 - Mar 12 Royal National Orthopaedic Hospital: Target Number Breaches % Target Met Target Threshold 14 Day to First OPA 516 3 99.4% 93% 62 Day Urgent GP Referral to Treatment 35.5* 5.5* 84.5% 85% 31 Day First Treatments 158 10 93.7% 96% 31 Day Subsequent Drug Therapy n/a n/a n/a 98% 31 Day Subsequent Surgery 150 6 96% 94% 31 Day Subsequent Radiotherapy n/a n/a n/a 94% 31 Day Subsequent Other n/a n/a n/a Not Set 62 Day Consultant Upgrades 1* 0 100% Not Set * accountable number of patients (patients are shared between trusts) 13 OF

Summary of Performance Apr 12 - Sep 12 Royal National Orthopaedic Hospital: Target Number Breaches % Target Met Target Threshold 14 Day to First OPA 331 2 99.4% 93% 62 Day Urgent GP Referral to Treatment 26.5* 1* 96.2% 85% 31 Day First Treatments 81 3 96.3% 96% 31 Day Subsequent Drug Therapy n/a n/a n/a 98% 31 Day Subsequent Surgery 67 2 97.0% 94% 31 Day Subsequent Radiotherapy n/a n/a n/a 94% 31 Day Subsequent Other n/a n/a n/a Not Set 62 Day Consultant Upgrades 1* 0.5 50% Not Set *accountable number of patients (patients are shared between trusts) From April 2011 to March 2012 RNOH met the cancer waiting times targets for 2WW, 31 day subsequent treatment and 62 day upgrades however they failed the targets for 62 day urgent GP referral and 31 day first treatment. There were a number of patients that breached for unavoidable reasons due to either medical or patient delays. There was a recurring theme of patients breaching due to patients requiring a cardiology review and this continues to be an issue. RNOH are in the process of investigating a formal arrangement with another trust to provide them with an urgent cardiology review service for patients on a cancer pathway. The trust also experiences difficulty, due to it being a single specialty stand alone hospital, with enabling operation dates when multiple specialty surgeons are required i.e. thoracic, vascular, spinal surgeons. The vascular support to the sarcoma service has been changed in recent months with the possibility of increasing this support further next year. Business planning for next year will be focused on developing further service level agreements to support the sarcoma service to provide multi specialty surgery. There were also a number of late referrals to the sarcoma service or instances where we the service was not informed that the patient was on a cancer pathway. RNOH will continue to raise these issues with the referring trusts and also through regular meetings with the commissioners and London Cancer. Performance from April 2012 to September 2012 has greatly with all performance targets met. 14 OF

Summary of Performance Apr 11 - Mar 12 University College London Hospital: Target Number Breaches % Target Met Target Threshold 14 Day to First OPA 1 0 100% 93% 62 Day Urgent GP Referral to Treatment 15* 2* 87% 85% 31 Day First Treatments 62 0 100% 96% 31 Day Subsequent Drug Therapy 147 0 100% 98% 31 Day Subsequent Surgery 3 0 100% 94% 31 Day Subsequent Radiotherapy 153 0 100% 94% 31 Day Subsequent Other 4 0 100% Not Set 62 Day Consultant Upgrades 0.5 0 100% Not Set * accountable number of patients (patients are shared between trusts) Summary of Performance Apr 12 - Sep 12 University College London Hospital: Target Number Breaches % Target Met Target Threshold 14 Day to First OPA 5 0 100% 93% 62 Day Urgent GP Referral to Treatment 6 0 100% 85% 31 Day First Treatments 33 0 100% 96% 31 Day Subsequent Drug Therapy 82 0 100% 98% 31 Day Subsequent Surgery 3 0 100% 94% 31 Day Subsequent Radiotherapy 60 0 100% 94% 31 Day Subsequent Other 0 0 - Not Set 62 Day Consultant Upgrades 0 0 - Not Set * accountable number of patients (patients are shared between trusts) 15 OF

Royal Marsden Hospital: Summary of Performance Jan 11 - Dec 11 The following data shows the number of patients on 62 day pathway patients either starting at or referred into the Trust and the performance for 2011. TWR No Breach Breach Referral Type Specialty Patient choice Patient choice Administrative delay Other Reason Total Breaches Total TWR patients % Compliance GP Urgent Sarcoma 164 6 6 170 96.47% 62 days Whole patients Accountable patients Tumour Type No Breach Breach Referral Type Total GP Urgent Referrals Sarcoma 39 6 45 Consultant Sarcoma upgrade 0 % Compliance No Breach Breach Total % Compliance 86.67% 27.5 3.0 30.5 90.16% 0.0 0.0 0.0 Standard 31 day performance The following data were extracted from the National Cancer Database on Open Exeter. The data shows the patients who have received their first definitive treatment (FDT), in 2010 (based on treated date), following the diagnosis of a new sarcoma tumour. Treatment Category Tumour Type No Breach Breach Total 31 day patients % Compliance First Treatment Sarcoma 151 1 152 99.34% Subsequent Treatment Sarcoma 238 3 241 98.76% 16 OF

8 Patient and Carer Feedback London Sarcoma Support Group Over the last year the London Sarcoma Support Group has been developed so that meetings alternate between the Royal Marsden Hospital and the London Sarcoma Service (RNOH) every month. The support group is advertised in clinical areas within the centres and promoted on patient and professional websites. Patients are encouraged to attend to express their views, share their experiences, gain support and learn where they can obtain more information. Clinical members are invited to give presentations and provide feedback when appropriate. London Sarcoma Service User Forum A sarcoma user forum has been developed at the London Sarcoma Service with current participation from 6 users. The forum meets every 2 months to discuss their experiences and suggest improvements which could be made. Each meeting has a different theme to cover the whole patient pathway. An action plan is created after each meeting and completed actions are fed back at the next meeting. Feedback will be given at the SAG when appropriate. Patient Representation at SAG Members of the London Sarcoma Service User Forum are invited to attend the SAG. One of the users has attended 2 of the meetings since joining the forum. The CNS at RMH have approached some patients to attend the SAG but unfortunately there have been no patients who have shown an interest in attending. The RMH have a patient participation group which the Sarcoma CNS feed into if necessary. National Cancer Patient Experience Survey The National Cancer Patient Experience Programme Survey 2011/12 provided useful feedback for both MDTs within the LSESN. RNOH and RMH saw a great improvement in their results; however results at UCLH have deteriorated compared to the previous year. All three trusts have produced an action plan and are working on improving results for the next survey. UCLH is working with RNOH to learn from the actions they have taken to improve their results. A summary of the results for each Trust will be discussed at the SAG meeting in January 2013. 17 OF

9 Distribution of Pathways and Guidelines 11-1c-105l to 11-1c-113l The SAG has asked each network to nominate sarcoma leads within their network/trusts. Using this list we have created a communication directory which we have used to inform referring networks and trusts of any developments within the service over the last year. We have distributed all bone, soft tissue and site-specific shared care pathways to these trust/network sarcoma leads as well as clinical guidelines and lists of designated chemotherapy and radiotherapy practitioners. We have also uploaded pathways and documentations onto our website www.lsesn.nhs.uk and we have emailed the leads when new items have been added to the website. The SAG has also asked for required agreements for our shared care pathways for soft tissue sarcoma from the chairs of the site-specific NSSGs in each of our 12 referring networks, and agreements from each designated oncologist s clinical director. However, it has proved very difficult to obtain all of the required agreements and this will require further work over the coming year. 10 Mortality Rates London Sarcoma Service: Surgery: There were no sarcoma deaths within 30 days of surgery at RNOH from April 2011 to March 2012 Chemotherapy: A 12 month audit at UCLH of deaths within 30 days of chemotherapy between April 2011 and March 2012 identified 19 deaths of patients with sarcoma.there were 299 new courses of chemotherapy treatment during this time period, which is therefore a rate of 6.35% Radiotherapy: An audit at UCLH was done which showed that between April 2011 and March 2012 there were: 178 total radiotherapy treatments 7 patient deaths within 30 days of end of treatment, which is a rate of 4% Royal Marsden Hospital: Surgery: Over a two year period in 2011-2012 there were approximately 120 primary retroperitoneal sarcomas of which there were 0 deaths within 30 days. LONDON & SOUTH EAST SARCOMA NETWORK: ANNUAL REPORT OF DATE DECEMBER 2011