London and South East Sarcoma Network

Transcription

1 London and South East Sarcoma Network Supra Network Sarcoma Advisory Group (SAG) Constitution 20 Hosted by North London Cancer Provider Network Date: November 20 Version: Review Date: June 202

2 SAG Constitution - Agreement Cover Sheet This constitution has been agreed by: Position: Clinical Lead/Medical Director (Chair of the Cancer Network - host) Name: Kathy Pritchard Jones Organisation: UCLP Cancer Provider Network/London Cancer Date agreed: 28 th November 20 Position: Associate Network Director (on behalf on the network director) Name: Karen Gaunt Organisation: South West London Cancer Network Date agreed: 2 st November 20 Position: Rare Cancers Lead London and South East Coast SCGs Name: Ursula Peaple Organisation: London SCG Date agreed: 3 rd November 20 Position: Senior Commissioning Manager Name: Pam Evans Organisation: East of England SCG Date agreed: 5 th November 20 Position: Rare Cancers Commissioning Manager Name: David Harris Organisation: South Central SCG Date agreed: 8 th November 20 Position: Senior Commissioning Manager Name: Rod Walsh Organisation: South West SCG Date agreed: 29 th November 20 Position: Representative of the National Specialist Commissioning Group Name: Matthew Johnson Organisation: National Specialist Commissioning Group Date agreed: 24 th November 20 no electronic signature, agreement via , evidence in appendix page 9 no electronic signature, agreement via , evidence in appendix page 9 Position: Sarcoma Advisory Group Co-Chair Name: Mr Andrew Hayes Organisation: The Royal Marsden NHS Foundation Trust Date agreed: 4 th October 20 Position: Sarcoma Advisory Group Co-Chair Name: Dr Jeremy Whelan Organisation: University College London Hospitals NHS Foundation Trust Date agreed: 4 th October 20 Position: Research Clinical Lead Name: Dr Beatrice Seddon Organisation: University College London Hospitals NHS Foundation Trust Date agreed: 4 th October 20 Position: Research Clinical Lead Name: Prof Ian Judson Organisation: The Royal Marsden NHS Foundation Trust Date agreed: 4 th October 20 2 OF 29 DATE VEMBER 20

3 Position: Chair of Radiotherapy NSSG Name: Dr Sian Davies Organisation: North Central London Cancer Network Date agreed: 28 th September 20 Position: Chair of Chemotherapy NSSG Name: Kate de Lord Organisation: North Central London Cancer Network Date agreed: 27 th September 20 Position: Pathology Clinical Director Name: Dr Mary Falzon Organisation: University College London Hospital Date agreed: 7th November 20 Position: Medical Director Name: Prof Martin Gore Organisation: Royal Marsden Hospital Date agreed: 24 th November 20 Note: Signature is in relation to measure -c-9l as Cyril Fisher is the lead pathologist at RMH Sarcoma Advisory Group members agreed the constitution on 4 th October 20 3 OF 29 DATE VEMBER 20

4 Contents Reference No Subject Page Introduction 5 2 Configuration of the London and South East Sarcoma Network 5 3 Establishment of the SAG 6 4 Role of the SAG 7 5 Membership of the SAG 9 6 The MDTs 3 7 Designated Chemotherapy Service and Chemotherapy Practitioners 4 8 Designated Radiotherapy Department and Radiotherapy Practitioners 4 9 Molecular Biology/Cytogenetic Facilities 5 0 Designated GIST Histopathologists 5 Pathways and Guidelines 5 2 Data Collection Minimum Dataset 28 3 Audit 29 4 Research and Clinical Trials 29 5 Service Delivery Plan 29 Appendix National guidelines for the management of sarcoma 2 IOG Implementation Plan and sign-off 3 LSESN Guidance on referral of sarcomas 4 LSESN Patient Management Policy 5 LSESN Chemotherapy Shared Care Guidelines 6 LSESN Radiotherapy Shared Care Guidelines 7 LSESN Shared Care Pathways 8 Designated GIST Histopathologists 9 Area Audit 0 Minutes from SAG meetings Clinical Trials Report for The London Sarcoma Service 2 Clinical Trials Report for The Royal Marsden 3 Notes from the Annual Review Meeting 4 Letter from SWLCN Director 5 Extended SAG Membership Attendance 6 LSESN Communication Policy and Directory 7 Letter to Network Directors 4 OF 29 DATE VEMBER 20

5 . Introduction This document was compiled with the help of members of the London and South East Sarcoma Network Sarcoma Advisory Group. The document will be reviewed and updated annually. It sets out the national guidelines, together with the SAG s plans to implement them. The guidelines are specific to The London and South East Sarcoma Network and describe how the various health care professionals and organisations work together to provide care for an individual with sarcoma. 2. Configuration of the London and South East Sarcoma Network -a-0l In agreement with the Network Board and the London Specialist Commissioning Group (SCG) The London and South East Sarcoma Network (LSESN) was created to bring together two designated sarcoma centres: The London Sarcoma Service (LSS) (Royal National Orthopaedic Hospital (RH) and University College London Hospital (UCLH)) which hosts o a bone and soft tissue sarcoma MDT o a curative resection service for bone and soft tissue sarcomas o a retroperitoneal sarcoma service and The Royal Marsden Hospital (RMH) which hosts o a soft tissue sarcoma MDT o a curative resection service for soft tissue sarcomas o a retroperitoneal sarcoma service This Sarcoma Network meets the requirement for: minimum number of cases (LSS serves over 00 new bone cases and 300 new soft tissue cases per year, RMH serves approx 400 new soft tissue cases per year) a bone MDT with surgery provided on a single site (at RH), designated by the National Commissioning Group Limb, limb girdle and truncal soft tissue sarcoma surgery consolidated onto a single site relating to each MDT (RH and RMH) The London SCG and Lead Cancer Networks are satisfied with the LSESN model. The two centres provide a sarcoma service to a population of approximately 7 million residents, within 4 Cancer Networks, and supported by 5 SCGs: SCG London South East Coast East of England South Central South West Cancer Network North London North East London North West London South East London South West London Kent & Medway Sussex Surrey, West Sussex and Hampshire, including Chichester Anglia Mount Vernon Essex Central South Coast Dorset Part of Avon, Somerset and Wiltshire 5 OF 29 DATE VEMBER 20

6 All primary care providers and secondary care trusts within the defined catchment population of the 4 cancer networks will refer to: The London Sarcoma Service MDT (RH and UCLH) for bone sarcomas The London Sarcoma Service MDT or The Royal Marsden Hospital MDT for soft tissue sarcomas LSESN has a GP referral proforma which lists the referral criteria and contact details of the two MDTs ( Agreements are in place within each network and its associated SCG regarding the location of sarcoma referrals. In recognition of factors including the clinical diversity of sarcoma presentation, patient choice, and convenience of access in such a large geographical area, strict sectorisation between the two soft tissue MDTs has been avoided. Further information can be found in the IOG Implementation Plan (appendix 2) Bone Sarcoma Soft Tissue Sarcoma Network Diagnosis & Treatment Diagnostic Treatment Centre Clinic North London LSS RH/RMH LSS/RMH North East London LSS RHRMH LSS/RMH North West London LSS RHRMH LSS/RMH South East London LSS RH/RMH LSS/RMH South West London LSS RH/RMH LSS/RMH Kent & Medway LSS RH/RMH LSS/RMH Sussex LSS BSUH LSS/RMH Surrey, West Sussex & LSS RH/RMH LSS/RMH Hampshire Anglia Under 6s to LSS RH/RMH LSS/RMH Mount Vernon LSS RH/RMH LSS/RMH Essex LSS RH/RMH LSS/RMH Central South Coast LSS RH/RMH LSS/RMH Dorset - RH/RMH LSS/RMH Part of Avon, Somerset and Wiltshire - RH/RMH LSS/RMH Sarcoma Diagnostic Clinics -a-04l The LSESN SAG has agreed designated sarcoma diagnostic clinics for soft tissue sarcomas. These are held at the Royal National Orthopaedic Hospital, the Royal Marsden Hospital and Brighton and Sussex University Hospital. Primary care providers of the associated networks refer to these clinics for the initial diagnosis of soft tissue sarcoma. All 3 diagnostic clinics can perform biopsies on suspected sarcomas. The soft tissue diagnostic in Brighton links into The Royal Marsden soft tissue sarcoma MDT and diagnosed sarcomas are then sent to RMH for treatment. There are no other confirmed diagnostic clinics within the LSESN, however there is the expectation that there may be more in the future. The SAG will work with trusts who have expressed an interest in hosting a diagnostic clinic and ensure that there are clear links into a sarcoma MDT. 3. Establishment of the SAG -a-02l The LSESN has been formed in response to the requirements of the Sarcoma IOG which recommends the creation of a managed sarcoma network in which clinicians, commissioners and cancer networks work together to develop the appropriate diagnostic and treatment pathways to serve their population. In 200 the two previously separate Tumour Working Groups combined to form one group that was representative of the collaborative approach that the two sarcoma centres had adopted. This combined group has taken on the role of the Supra Network Sarcoma Advisory Group (SAG) for bone and soft 6 OF 29 DATE VEMBER 20

7 tissue sarcomas and is the forum for leading on LSESN operational issues. It works to ensure that care is to the standards outlined in the Cancer Reform Strategy (2007) and meets current guidelines and requirements including those in the Improving Outcomes for People with Sarcoma Manual (2006). The LSESN SAG is the only SAG covering the London and South East population. Host Network The SAG has agreed that the North London Cancer Network (UCL Partners) will be the host network for the SAG. 4. Role of the SAG -a-02l SAG Terms of reference Purpose The SAG supports the goals set out in the Calman Hine report to consistently achieve the best possible outcomes for patients and to achieve this by ensuring access to a uniformly high quality of care and service provision across the LSESN. The SAG supports the overall aim of the LSESN and facilitates the collaboration of providers of sarcoma services to provide optimum care based on best clinical practice. The SAG endorses the Improving Outcomes Guidance for Sarcoma and aims to provide services according to these recommendations. The SAG assumes corporate responsibility on behalf of the LSESN for co-ordination and consistency across the network in the development of pathways and guidelines, policies, audit, research and service improvement relating to sarcoma. Quorum A SAG meeting is quorate if representation from both RMH and LSS are present, and a minimum of four attendees plus at least one of the co-chairs. Frequency of meetings -c-0l Meetings will be held quarterly. A summary of attendance at the SAG will appear in the Annual Report. Planned meeting dates for the following year (202) are as follows: January 27 th UCLH April 27 th RMH July 3 th UCLH October 9 th RMH All meetings are 3-5pm. Service planning. To agree referral and clinical guidelines for sarcoma in line with national standards and covering the whole care pathway. To subsequently review, agree and update these guidelines on an annual basis. To audit their implementation 2. To develop recommendations for cross-boundary integrated care pathways across primary, secondary and tertiary care provision. To be the primary source of clinical opinion for bone and soft tissue sarcoma for the networks associated with the SAG. 3. To advise on service provision for sarcoma and make recommendations for service improvement/reconfiguration, including the implementation of appropriate Improving Outcomes Guidance, to the Network Lead Cancer Commissioners and the Cancer Network Boards. To recommend priorities for service development to the SCG 4. To ensure decisions become integrated into constituent organisation structures and processes 7 OF 29 DATE VEMBER 20

8 5. To consult with the relevant cross-cutting network groups on issues regarding the SAG s tumour types, involving chemotherapy, radiotherapy, cancer imaging, histopathology, laboratory investigation, specialist palliative care and user involvement 6. To promote high quality care and reduce inequalities in service delivery 7. To take account of the views of patients and carers 8. To take account of opportunities for service and workforce design Service improvement and redesign 9. To stimulate and lead service improvement initiatives for the SAG and for each individual sarcoma MDT 0. To undertake process mapping and capacity and demand analyses on a regular basis. To develop/approve high quality information for patients, for use across the network Service quality monitoring and evaluation 2. To agree on priorities for common data collection in line with national priorities, and to implement a minimum dataset for sarcoma 3. To receive reports on performance and cancer waiting times. To review the quality and completeness of data, recommending corrective action where necessary 4. To agree and commission Network audits in sarcoma. To subsequently review the results of these audits 5. To monitor progress on meeting national cancer measures and ensure action plans agreed following peer review are implemented 6. To monitor the quality and effectiveness of sarcoma services across the Network 7. To ensure services are evaluated by patients and carers 8. To monitor the implications of national and regional issues affecting sarcoma and develop recommendations for cross-network action 9. To report identified risks/untoward incidents to ensure learning is spread Workforce development 20. To consider the education and training needs of teams and individuals and promote education on sarcoma across the Network 2. To maintain an awareness of activities in adjacent cancer networks 22. To consider the overall workforce requirements of the SAG, ensuring that appropriate workforce numbers and CPD are available and taking account of opportunities for skill mix changes 23. To promote links between teams through rotation of staff and to develop common recruitment strategies Research & Development 24. To agree a common approach to research and development, working with network research teams and participating in nationally recognised studies whenever possible 8 OF 29 DATE VEMBER 20

9 25. To agree a list of clinical trials for sarcoma from the NCRN portfolio and other local trials and facilitate the means by which patients may be entered Annual report and work programme 26. To provide the Network Boards with an annual report of progress and activity to feed health economy clinical governance reporting processes 27. To provide the Network Boards with an annual work programme in the context of prioritised clinical governance, ensuring it is fed into commissioning, with agreements specifying standards, service developments and improvement, data collection, audit, research, education and training 28. To produce a service delivery plan, for approval by the Network Boards 5. Membership of the SAG -a-02l MDT Lead Clinicians from each MDT must ensure that MDTs are adequately represented at SAG meetings. Representatives can be drawn from the core and extended MDTs. The Chair must ensure that there is adequate representation at the SAG from each staff group on the core MDT and ensure their involvement as appropriate. The core SAG membership is listed below: CORE MEMBERS: MDT Lead Clinicians from associated MDTs Dr Jeremy Whelan Lead Clinician, Sarcoma MDT London Sarcoma Service Prof Ian Judson Lead Clinician, Sarcoma MDT Royal Marsden Hospital Core Nurse Members from associated MDTs Julie Woodford Nurse Consultant, RH London Sarcoma Service Cerys Propert-Lewis Clinical Nurse Specialist Royal Marsden Hospital Alison Dunlop Clinical Nurse Specialist Royal Marsden Hospital Co-Chairs of the SAG Dr Jeremy Whelan Lead Clinician, Sarcoma MDT London Sarcoma Service Mr Andrew Hayes Consultant Surgeon Royal Marsden Hospital User Representatives Karen Delin Patient Representative Patient of RMH Nominated members responsible for users issues and information for patients and carers Julie Woodford Nurse Consultant, RH London Sarcoma Service Cerys Propert-Lewis Clinical Nurse Specialist, RMH Royal Marsden Hospital 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 Prof Ian Judson Consultant Medical Oncologist Royal Marsden Hospital Administrative Support Fiona McCafferty Administrative support North London Cancer Network Specialised Commissioning Group Members Linda De Freitas Rare Cancers Manager London Specialised Commissioning Group Ursula Peaple Rare Cancers Lead London Specialised Commissioning Group Matthew Johnson Senior Commissioning Manager National Specialised 9 OF 29 DATE VEMBER 20

10 Commissioning Team Additional extended members of the SAG are distributed meeting papers and invited to attend where possible. EXTENDED MEMBERS: Management Support Melissa Morris Service Manager RMH Claire Euesden General Manager RH Chrissie O Leary General Manager UCLH Gemma French Project Manager RH/UCLH Delphine Barraclough Project Manager BSUH Additional Clinical members from the two sarcoma MDTs: Prof Tim Briggs Consultant Surgeon RH Mr Will Aston Consultant Surgeon RH Mr Rob Pollock Consultant Surgeon RH Mr John Skinner Consultant Surgeon RH Prof Max Malago Consultant Surgeon UCLH/RFH Mr Arjun Shankar Consultant Surgeon UCLH/RFH Prof David Nicol Consultant Surgeon UCLH/RFH Mr Dirk Strauss Consultant Surgeon RMH Prof Meirion Thomas Consultant Surgeon RMH Mr George Ladas Consultant Surgeon RBH Mr Simon Jordan Consultant Surgeon RBH Dr Maria Michelagnoli Consultant Paediatric Oncologist UCLH Dr Palma Dileo Consultant Medical Oncologist UCLH Dr Sandra Strauss Consultant Medical Oncologist UCLH Dr Anna Cassoni Consultant Clinical Oncologist UCLH Dr Michelle Scurr Consultant Medical Oncologist RMH Dr Gillian Ross Consultant Medical Oncologist RMH Dr Anne Drury Consultant Clinical Oncologist RMH Dr Charlotte Benson Consultant Medical Oncologist RMH Dr Thillainayagam Muthukumar Consultant Radiologist RH Dr Asif Saifuddin Consultant Radiologist RH Dr Margaret Hall-Craggs Consultant Radiologist UCLH Dr Charles House Consultant Radiologist UCLH Dr Eleanor Moskovic Consultant Radiologist RMH Dr Christine Messieu Consultant Radiologist RMH Prof Adrienne Flanagan Consultant Histopathologist RH/UCLH Dr Fernanda Amary Consultant Histopathologist RH Dr Roberto Tirabosco Consultant Histopathologist RH Prof Cyril Fisher Consultant Histopathologist RMH Dr Khin Thway Consultant Histopathologist RMH Scott Mitchell Specialist Pharmacist RMH Shared Care Members from extended MDTs Omar Al-Salihi Consultant Clinical Oncologist University Hospital Southampton NHS Foundation Trust Robert Crellin Consultant Clinical Oncologist Poole Hospital Andrew Davies Consultant Medical Oncologist University Hospital Southampton NHS Foundation Trust Sharadah Essapen Consultant Clinical Oncologist Royal Surrey County Hospital Maxine Flubacher Consultant Clinical Oncologist Poole Hospital James Gildersleve Consultant Clinical Oncologist Royal Berkshire Hospital Rob Glynne-Jones Consultant Clinical Oncologist Mount Vernon Cancer Centre Juliet Gray Consultant Paediatric Oncologist University Hospital Southampton NHS Foundation Trust Julia Hall Consultant Clinical Oncologist Kent & Canterbury Hospital 0 OF 29 DATE VEMBER 20

11 Charles Hamilton Consultant Clinical Oncologist University Hospital Southampton NHS Foundation Trust Tamas Hickish Consultant Medical Oncologist Royal Bournemouth Hospital Rema Jyothirmayi Consultant Clinical Oncologist Kent Oncology Centre, Maidstone Hospital Kate Lankester Consultant Clinical Oncologist Royal Sussex County Hospital, Brighton Craig Macmillan Consultant Clinical Oncologist Northampton General Hospital Krishnaswamy Madhavan Consultant Clinical Oncologist Southend University Hospital Jamie Morgan Consultant Clinical Oncologist Ipswich Hospital Gary Nicolin Consultant Medical Oncologist University Hospital Southampton NHS Foundation Trust Peter Ostler Consultant Clinical Oncologist Mount Vernon Cancer Centre Sherif Raouf Consultant Medical Oncologist Queens Hospital, Romford Peter Simmonds Consultant Medical Oncologist University Hospital Southampton NHS Foundation Trust Olga Slater Consultant Paediatric Oncologist Great Ormond Street Hospital Sunil Skaria Consultant Clinical Oncologist Essex County Hospital, Colchester Helen Stubbings Consultant Clinical Oncologist Norfolk and Norwich University Hospital Jeff Summers Consultant Clinical Oncologist Kent Oncology Centre, Maidstone Hospital Anne Suovuori Consultant Clinical Oncologist Queen Alexandra Hospital, Portsmouth Saad Tahir Consultant Medical Oncologist Broomfield Hospital, Chelmsford Justin Waters Consultant Medical Oncologist Kent Oncology Centre, Maidstone Hospital Denise Williams Consultant Paediatric Oncologist Addenbrooke s Hospital, Cambridge Rachael Windsor Consultant in Teenage and Young Adult Royal Marsden Hospital Oncology Andy Webb Consultant Medical Oncologist Royal Sussex County Hospital, Brighton Sarcoma leads from each referring network We have asked each network to nominate sarcoma leads within their network/trusts. Using this list we have created a communication directory which we use to inform referring networks and trusts of any developments within the service. We also upload pathways and documentations onto our website and we our referrers when there are new items on the website. The communication policy and directory can be found in appendix 6 -c-07l, -c-08l, -c-l, -c-2l Chairman and vice-chairman The chair is of 3 years duration and the position is appraised annually. At present the co-chairs are Mr Andrew Hayes and Dr Jeremy Whelan, appointed in March 200. When a new chair is required, nominations will be made to the Clinical Director of the host Cancer Network. In the event of more than one nomination being received there will be a vote to elect the chair. All members of the SAG will be eligible to vote. There is no vice-chair as the two co-chairs deputise for each other. Between meetings, the co-chairs will action urgent items or those with prior agreement from the SAG. The Chair(s) of the SAG will have an annual review with the Chair of the North London Cancer Network Board to discuss the SAG s progress over the previous year and the work plan for the coming year. The annual review will take the form of a face-to-face meeting and documentation sufficient to show that a meeting took place will be produced. OF 29 DATE VEMBER 20

12 User Involvement and the Lead Nurse -a-02l The SAG always aims to include the views of patients and service users when planning and reviewing its work streams. It also ensures that services are evaluated by patients and carers through regular patient satisfaction surveys and other initiatives. At present the SAG has one user representative, Karen Delin (RMH), however, increasing this to two remains a priority on the SAG Work Programme. The SAG Lead Nurse will work with other SAG members to identify potential candidates. If it is not possible to have user representation at SAG meetings there is a formal process for obtaining user advice and involvement. The nominated members of the SAG who are responsible for users issues liaise with the SWLCN and NCLWECCN User Coordinators who ensure user representation by working with the network Patient Partnership Groups. Julie Woodford, the SAG Lead Nurse and Cerys Propert-Lewis, CNS are the SAG members nominated as having specific responsibilities for user s issues and information for patients and ensuring that users views are presented. The Lead Nurse will take the lead for patient information and user involvement for the SAG, ensuring that all patient information is reviewed and updated on an annual basis and that user representatives are supported in the meetings and at other events. The Lead Nurse will also work with all SAG members to capture data relating to patient experience and ensure that any identified actions are implemented. In collaboration with Sarcoma UK there is a monthly patient support group and the location of this is alternated between the two centres (RMH and LSS). 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. CNS s will provide the link to the London Sarcoma Support Group and will recommend the group to patients where appropriate. Research and Clinical Trials Beatrice Seddon and Ian Judson are the SAG nominated lead members for ensuring that recruitment to clinical trials and other well designed studies is integrated into the function of the SAG. Administrative support Administrative support to the SAG is currently provided by the North London Cancer Provider Network (UCL Partners) who draft and disseminate the minutes no more than three weeks following the meeting. This includes responsibility for keeping a record of attendance and apologies for absence to the meetings. They will liaise with the Chairs and other members of the SAG to ensure that all issues pertaining to sarcoma and the wider cancer agenda are discussed at the SAG meeting. The two sarcoma centres provide support to the SAG for booking rooms and meeting notifications. The Lead Manager at each trust will co-ordinate the preparation of documentary evidence for annual peer review with the support of the Network management team. Any information that requires dissemination to the SAG membership will be sent by the Lead Managers and they will make relevant documentation available on the LSESN website. 2 OF 29 DATE VEMBER 20

13 6. The MDTs The two sarcoma MDTs each have their own Operational Policy outlining core and extended membership. Both MDTs have sufficient core membership and core members attended at least 2/3 of MDT meetings in the last year. SUMMARY OF MEEETINGS: London Sarcoma Service (Bone and Soft Tissue MDT) Royal Marsden Soft Tissue MDT Lead Clinician Jeremy Whelan Lead Clinician Ian Judson Weekly bone and soft tissue diagnostic MDT meeting, via video teleconferencing (UCLH and RH) Weekly pre-diagnostic meeting at RH to discuss new bone and soft tissue referrals Monthly treatment review MDT meeting to discuss bone and soft tissue patients, with attendance from UCLH and RH Weekly sub-site abdominal sarcoma meeting to review patients with intraabdominal sarcomas Weekly soft tissue diagnostic MDT meeting Fortnightly resection pathology meeting Weekly sub-site thoracic sarcoma meeting to discuss and review referrals of chest wall sarcomas and lung metastases. Oncologists from UCLH and RMH attend as well as thoracic surgeons from RBH (via video conferencing) Monthly Clinical Trials Meeting Weekly Clinical Trials Meeting Joint Clinical Trials meeting quarterly Sub-specialisation Retroperitoneal surgery is undertaken at both LSS (UCLH) and RMH with the National Specialist Commissioning Advisory Group audit showing RMH as the largest service in England Thoracic surgery for sarcomas referred to both LSS and RMH MDTs is undertaken at the Royal Brompton Hospital with support of a dedicated joint extended MDT meeting Neurosurgery for neurofibromatosis patients with MPNST sarcomas will be managed in conjunction with Guy s & St Thomas s Foundation Trust neurofibromatosis service neurosurgeon The above teams are named as extended MDT members in the Operational Policies of the LSS and RMH MDTs. Shared management with site-specific cancer teams There are a number of sarcomas that may present to and need management by other site-specific cancer teams. These include gynaecological sarcomas, head and neck sarcomas, central nervous system sarcomas and adult-type sarcomas arising in children. The site-specific MDTs have primary responsibility to liaise with the sarcoma MDTs to discuss the management of each patient. The key contacts for these site-specific MDTs can be found in the extended MDT membership lists in each of the MDTs Operational Policies. See appendix 7 for shared care pathways 3 OF 29 DATE VEMBER 20

14 Shared Care As many patients live some distance away from UCLH or RMH, it is not always practical to travel into London for all aspects of treatment. Wherever possible, arrangements are made with a named consultant in a local hospital to share care for any supportive therapies. Under the guidance of the cancer centres, blood analysis, antibiotic administration or blood products may be required. A shared care folder has been developed for patients who continue treatment outside of UCLH. Further details can be found in the LSS Operational Policy. 7. Designated Chemotherapy Service and Chemotherapy Practitioners -a-05l, -c-7l The SAG and the Network Board have agreed which chemotherapy services are authorised to deliver chemotherapy regimes for the treatment of soft tissue and bone sarcoma. Designated hospital for chemotherapy Addenbrooke s Hospital, Cambridge Broomfield Hospital, Chelmsford Essex County Hospital, Colchester Great Ormond Street Hospital Ipswich Hospital Kent & Canterbury Hospital Kent Oncology Centre, Maidstone Hospital Mount Vernon Cancer Centre Norfolk and Norwich University Hospital Northampton General Hospital Queen Alexandra Hospital, Portsmouth Queens Hospital, Romford Royal Bournemouth Hospital Royal Surrey County Hospital Royal Sussex County Hospital, Brighton Southend University Hospital University Hospital Southampton NHS Foundation Trust The SAG has named the oncologists (who are not core members of a sarcoma MDT) who should be responsible for the delivery of chemotherapy to bone and soft tissue sarcoma patients. The SAG has written guidelines which document the principles and criteria for referring patients to chemotherapy services outside the two centres (see appendix 5). These designated chemotherapy practitioners are named as extended MDT members of the relevant sarcoma MDT. They are also included as extended members of the SAG. 8. Designated Radiotherapy Department and Radiotherapy Practitioners -a-06l, -c-8l The SAG and the Network Board have agreed which radiotherapy departments are authorised to deliver radical radiotherapy courses for the treatment of soft tissue and bone sarcoma: Designated hospital for radiotherapy Addenbrooke s Hospital, Cambridge Colchester General Hospital Ipswich Hospital 4 OF 29 DATE VEMBER 20

15 Kent and Canterbury Hospital Kent Oncology Centre, Maidstone Hospital Mount Vernon Cancer Centre Norfolk and Norwich University Hospital Northampton General Hospital Poole Hospital Queen Alexandra Hospital, Portsmouth Royal Berkshire Hospital Royal Sussex County Hospital, Brighton Southend University Hospital University Hospital Southampton NHS Foundation Trust The SAG has named the oncologists (who are not core members of a sarcoma MDT) who should be responsible for the delivery of radiotherapy to bone and soft tissue sarcoma patients. The SAG has written guidelines which document the principles and criteria for referring patients to radiotherapy departments outside the two centres (see appendix 6). These designated radiotherapy practitioners are named as extended MDT members of the relevant sarcoma MDT. They are also included as extended members of the SAG. 9. Molecular Biology/Cytogenetic Facilities -a-07l The Network Board has nominated which laboratories LSESN will use for cytogenetic and molecular biology investigations on sarcoma cases: Royal Marsden Hospital Royal National Orthopaedic Hospital Department of Cellular Pathology, University of Birmingham Medical School (for GIST molecular analysis) 0. Designated GIST Histopathologists -c-9l The SAG has agreed the consultant histopathologists who are responsible for the final reporting and reviewing of the histological diagnosis of GIST in the SAG s catchment area Prof. M Novelli is the specialist pathologist reporting and reviewing GIST in the LSS MDT. This has been agreed by the SAG and the clinical director at UCLH. He is named as an extended MDT member in the LSS MDT Operational Policy, as part of the abdominal sarcoma team. He is a core member of the UCLH Upper GI MDT (appendix 8) and has taken part in the National GI Pathology EQA scheme. Prof. C Fisher is the specialist pathologist reporting and reviewing GIST in the RMH MDT. This has been agreed by the SAG and the clinical director at RMH. He is a core member of the RMH sarcoma team as detailed in the RMH Operational Policy (appendix 8) and has taken part in the National GI Pathology EQA scheme.. Pathways and Guidelines -c-05l to -c-3l The LSESN follows the national guidelines for the management of sarcoma which are summarised in appendix.the LSESN has agreed referral guidelines (appendix 3), and a Patient Management Policy (appendix 4). The LSESN SAG has agreed patient pathways which both MDTs have adopted: 5 OF 29 DATE VEMBER 20

16 Bone Sarcoma Presentation and Diagnostic Pathway: London and South East Sarcoma Network ( -c-06l, -c-08l Bone Sarcoma: Presentation and Diagnostic Pathway* - new diagnosis & recurrence Secondary Care GP A&E via GP Diagnostics Referral and Presentation via MDT Coordinator Suspected Bone Sarcoma - clinical presentation/signs & symptoms - suspicious X-ray/imaging - post-operative diagnosis Referral to The London Sarcoma Service (LSS) (Royal National Orthopaedic Hospital and University College London Hospitals) All plain films and MRI can be carried out at referring Trusts but all biopsies to be carried out at LSS Send 2WW form/tertiary referral form and imaging to MDT Coordinator; MDT Office, Sarcoma Unit, Muriel Sands House, RH, Brockley Hill, Stanmore, Middlesex HA7 4LP Telephone: Fax: clarebrown3@nhs.net (referral forms can be found on the website Patient presents to Primary/ Secondary Care with symptoms suggestive of recurrence via Consultant via CNS All histology reviewed by Specialist Sarcoma Pathologist RH will request any further diagnostic tests required Discuss at Pre-Diagnostic Meeting (RH) - MDT agree diagnostic plan Nurse-led Telephone Clinic - explain investigations required - send investigations leaflet Diagnostic Investigations and additional primary tumour imaging If bone sarcoma suspected: MRI, CT Chest, Bone Scan (if not already had), Biopsy +/- GA (only to be carried out at RH) Benign Existing Meeting (RH) - benign tumours and metastatic bone tumours from other primaries discussed - treatment planning as appropriate Malignant sarcoma & other related disease See detailed diagnostic pathway All small cell sarcomas will have molecular/ cytogenetic testing London Sarcoma Service VTC Diagnostic MDT (RH & UCLH) - treatment planning - identification of treatment centre - assignation of key worker ** Patient presents to Primary/ Secondary Care with symptoms suggestive of recurrence via CNS Refer back to GP or local Trust as appropriate Palliative Care OPA - patient told results and given treatment plan - CNS present and counselling room available - CNS sends diagnosis fax to GP Oncology OPA/ Referral to Primary Treatment Centre (see treatment pathway) Pre-Op Assessment Clinic - same day as OPA if possible Contact points to refer back known patients with symptoms suspicious of recurrence: Patient: GP/CNS (key worker)/ Consultant (via secretary) Primary/Secondary Care: Consultant (via secretary) MDT Coordinator Surgery * this pathway applies to bone tumours arising at all site in all ages. Patients under 24 will also be referred to the teenage and young adults or paediatrics MDTs as appropriate. ** suspected cranio-facial bone tumours will come via H&N teams to UCLH Sarcoma Unit Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN BONE SARCOMA: PRESENTATION & DIAGSTIC PATHWAY 2 OF DATE VEMBER 20 6 OF 29 DATE VEMBER 20

17 Bone Sarcoma Detailed Diagnostic Pathway: London and South East Sarcoma Network ( -c-08l Bone Sarcoma: Detailed Diagnostic Pathway* NEW DIAGSIS RECURRENCE Clinical Presentation Suspected recurrence - Key Worker & MDT Coordinator informed Plain imaging of site** Local Recurrence Metastatic Disease Suspicion of bone cancer Plain film** +/- MRI**?CT Chest** MRI** MRI whole bone** [extremity tumours] Discuss at London Sarcoma Service VTC Diagnostic MDT Discuss at London Sarcoma Service VTC Diagnostic MDT Increased index of suspicion Complete Staging Consider biopsy if planned resection Complete Staging Consider biopsy if planned resection Discuss at Pre-Diagnostic Meeting (RH) Additional investigations planned in prediagnostic meeting ** investigation may be carried out at referring hospital Lower certainty of malignancy Highly suspicious of malignancy Biopsy +/- GA If confirmed sarcoma CT Chest** Bone Scan** Biopsy +/- GA (must be carried out at LSS) Histopathology Immunohistochemistry Molecular/genetic testing as appropriate Laboratory = RH All histology reviewed by Specialist Sarcoma Pathologist See LSESN Patient Management Policy Complete staging * this pathway applies to bone tumours arising at all sites in all ages Patients under 24 will also be referred to the teenage and young adults or paediatrics. MDTs as appropriate Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN BONE SARCOMA: DETAILED DIAGSTIC PATHWAY OF DATE VEMBER 20 7 OF 29 DATE VEMBER 20

18 Bone Sarcoma Treatment Pathways: London and South East Sarcoma Network ( -c-0l Bone Sarcoma: Treatment Pathway* - new diagnosis & recurrence Treatment with Curative Intent All bone patients are treated by The London Sarcoma Service MDT The London Sarcoma Service MDT are responsible for all aspects of patients care Patients under 24 will also be referred to the Teenage and Young Adult or Paediatric MDTs as appropriate when discussed at the Sarcoma MDT Patients will be referred to other teams such has rehabilitation and psychological teams where appropriate, when discussed at the Sarcoma MDT or in Outpatient Clinic London Sarcoma Service VTC Diagnostic MDT - diagnosis - treatment planning ** If post-op radiotherapy is known to be indicated, patient will meet oncologist prior to surgery if possible Curative Intent st treatment Surgery London Sarcoma Service Treatment Review MDT Neo-adjuvant chemotherapy/ radiotherapy ** ** London Sarcoma Service Treatment Review MDT/ VTC MDT Surveillance Adjuvant Treatment Surgery Radiotherapy +/- Chemotherapy Surveillance See LSESN Patient Management Policy * this pathway applies to bone tumours arising at all sites in all ages ** Note: Cranio-facial bone tumours are also discussed in the UCLH Head & Neck MDT at these points Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN BONE SARCOMA: TREATMENT PATHWAY OF 2 DATE VEMBER 20 8 OF 29 DATE VEMBER 20

19 -c-0l London and South East Sarcoma Network ( Bone Sarcoma : Treatment Pathway * - new diagnosis & recurrence Treatment with Non-Curative Intent (patients with extensive metastatic disease) All bone patients are treated by The London Sarcoma Service MDT The London Sarcoma Service MDT are responsible for all aspects of patients care Patients under 24 will also be referred to the Teenage and Young Adult or Paediatric MDTs as appropriate when discussed at the Sarcoma MDT The Sarcoma MDT will engage the Specialist Palliative Care MDT as appropriate when discussed at the Sarcoma MDT Patients will be referred to other teams such has rehabilitation and psychological teams where appropriate, when discussed at the Sarcoma MDT or in Outpatient Clinic London Sarcoma Service VTC Diagnostic MDT - diagnosis - treatment planning If post-operative radiotherapy is known to be indicated, patient will meet oncologist prior to surgery if possible Non-Curative Intent Surgery London Sarcoma Service Treatment Review MDT Adjuvant Treatment Neo-adjuvant chemotherapy Radiotherapy ** ** ** London Sarcoma Service Treatment Review MDT Surgery (as appropriate) London Sarcoma Service Treatment Review MDT Radiotherapy +/- Chemotherapy Adjuvant Treatment Surveillance Radiotherapy +/- Chemotherapy See LSESN Patient Management Policy Surveillance * this pathway applies to bone tumours arising at all sites in all ages ** Note: Cranio-facial bone tumours are also discussed in the UCLH Head & Neck MDT at these points Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN BONE SARCOMA: TREATMENT PATHWAY 2 OF 2 DATE VEMBER 20 9 OF 29 DATE VEMBER 20

20 Bone Sarcoma Follow-Up Pathway: London and South East Sarcoma Network ( -c-2l Bone Sarcoma: Follow Up Pathway* All patients are followed up at clinics within the London Sarcoma Service by the London Sarcoma Service MDT See LSESN Follow-up Guidelines Completion of Surgery Completion of Multi-Modality Treatment Surgical Follow-Up at RH Oncology Follow-Up at UCLH +/- Surgical Follow-Up at RH (if patient has had surgery) Surveillance Suspicion of recurrence Refer to the Presentation and Diagnostic Pathway for referral process and contact points when suspected recurrence All patients are followed up at clinics within the London Sarcoma Service * this pathway applies to bone tumours arising at all sites in all ages Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN BONE SARCOMA: FOLLOW-UP PATHWAY OF DATE VEMBER OF 29 DATE VEMBER 20

21 Complete Bone Pathway: 2 OF 29 DATE VEMBER 20

22 Soft Tissue Sarcoma Presentation and Diagnostic Pathway: London and South East Sarcoma Network ( -c-05l, -c-07l Soft Tissues of the Limb and Trunk Wall: Presentation and Diagnostic Pathway Secondary Care GP A&E Soft Tissue Lump Diagnosis Uncertain Referral and Diagnostics Presentation Referral to the Local Diagnostic Clinic at Brighton 2WW form/tertiary referral form sent to Fax: Any queries contact Maddy: ext 7962 (referral forms can be found on the sussex cancer network website Symptoms: > 5cm Increasing in size Deep to the fascia Painful Recurrent after previous excision Suspicious X-ray/imaging Post-operative diagnosis Referral to The Royal Marsden Sarcoma Service 2WW form/tertiary referral form and imaging sent to Sarcoma MDT Coordinator; MDT Office, Basement Dovehouse, The Royal Marsden NHS Foundation Trust, Fulham Road, SW3 6JJ Telephone: Fax: (referral forms can be found on the website RMH will request any further diagnostic tests required Discuss at Diagnostic Meeting (RMH) - MDT agree diagnostic plan Patient contacted - offered a diagnostic OPA and booked for relevant tests ReferbacktoGPorlocal Trust as appropriate All histology reviewed by Specialist Sarcoma Pathologist All imaging can be carried out at referring trusts but all biopsies to be carried out at local diagnostic clinic or RMH Sarcoma Unit Diagnostic Investigations and additional primary tumour imaging MRI, CT Chest Biopsy +/- GA (only to be carried out at RH/RMH) Benign Existing Meeting (RH)/ Royal Marsden Sarcoma Service MDT - benign tumours - treatment planning as appropriate via MDT Coordinator Patient presents to Primary/ Secondary Care with symptoms suggestive of recurrence All small cell sarcomas will have molecular/ cytogenetic testing Unplanned excision and histology suspicious of sarcoma Discuss at Pre-Diagnostic Meeting (RH) - MDT agree diagnostic plan Nurse-led Telephone Clinic - explain investigations required - send investigations leaflet Malignant sarcoma & other related disease London Sarcoma Service (RH & UCLH)/Royal Marsden Sarcoma Service Diagnostic MDTs - treatment planning - Identification of treatment centre - assignation of key worker OPA - patient told results and given treatment plan - CNS present and counselling room available - CNS sends diagnosis fax to GP All imaging can be carried out at referring trusts but all biopsies to be carried out at RH Referral to The London Sarcoma Service (Royal National Orthopaedic Hospital and University College London Hospitals) 2WW form/tertiary referral form and imaging sent to MDT Coordinator; MDT Office, Sarcoma Unit, Muriel Sands House, RH, Brockley Hill, Stanmore, Middlesex HA7 4LP Telephone: Fax: clarebrown3@nhs.net (referral forms can be found on the website RH will request any further diagnostic tests required See detailed diagnostic pathway via CNS via Consultant Patient presents to Primary/ Secondary Care with symptoms suggestive of recurrence Palliative Care Oncology OPA/ Referral to Primary Treatment Centre (see treatment pathway) Pre-Op Assessment Clinic - same day as OPA if possible Surgery Contact points to refer back known patients with symptoms suspicious of recurrence: Patient: GP/CNS (key worker)/consultant (via secretary) Primary/Secondary Care: Consultant (via secretary) MDT Coordinator This pathway applies to patients of all ages except children. For all non-rhabdomyosarcomatous soft tissue sarcomas and extremity rhabdomyosarcomas in children discussion with the sarcoma MDT is strongly encouraged when diagnosis is suspected or recently established. Patients under 24 will also be referred to the teenage and young adults or paediatrics MDTs as appropriate. This pathway applies to new diagnosis and recurrences Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN SOFT T SARCOMA: PRESENTATION & DIAGSTIC PATHWAY OF DATE VEMBER OF 29 DATE VEMBER 20

23 Soft Tissue Sarcoma Detailed Diagnostic Pathway: -c-07l London and South East Sarcoma Network ( Soft Tissue Sarcomas of the Limb and Trunk Wall: Detailed Diagnostic Pathway NEW DIAGSIS RECURRENCE Clinical Presentation Suspected recurrence - Key Worker & MDT Coordinator informed MRI** Local Recurrence Metastatic Disease Increased index of suspicion Ultrasound** / MRI** CT Chest** MRI** London Sarcoma Service Pre- Diagnostic MDT/Royal Marsden Sarcoma Service Diagnostic MDT Additional investigations planned in prediagnostic meeting Discuss at London Sarcoma Service VTC Diagnostic MDT/Royal Marsden Sarcoma Service Diagnostic MDT Complete Staging Consider biopsy if planned resection Discuss at London Sarcoma Service VTC Diagnostic MDT/Royal Marsden Sarcoma Service Diagnostic MDT Complete Staging Consider biopsy to confirm diagnosis Lower certainty of malignancy Highly suspicious of malignancy Biopsy +/- GA If confirmed sarcoma Complete staging CT Chest** Biopsy +/- GA (must be carried out at RH)/ RMH/BSUH All small cell sarcomas will have molecular/ cytogenetic testing All histology reviewed by Specialist Sarcoma Pathologist Laboratories = RH and RMH See LSESN Patient Management Policy ** investigation may be carried out at referring hospital This pathway applies to patients of all ages except children. For all non-rhabdomyosarcomatous soft tissue sarcomas and extremity rhabdomyosarcomas in children discussion with the sarcoma MDT is strongly encouraged when diagnosis is suspected or recently established Patients under 24 will also be referred to the teenage and young adults or paediatrics MDTs as appropriate. This pathway applies to new diagnosis and recurrences Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN SOFT T SARCOMA: DETAILED DIAGSTIC PATHWAY OF DATE VEMBER OF 29 DATE VEMBER 20

24 Soft Tissue Sarcoma Treatment Pathways: -c-09l London and South East Sarcoma Network ( Soft Tissue Sarcomas of the Limb and Trunk Wall: Treatment Pathway Treatment with Curative Intent This pathway applies to patients of all ages except children. For all nonrhabdomyosarcomatous soft tissue sarcomas and extremity rhabdomyosarcomas in children discussion with the sarcoma MDT is strongly encouraged when diagnosis is suspected or recently established This pathway applies to new diagnosis and recurrences All soft tissue sarcomas of the limb and trunk wall are treated by The London Sarcoma Service MDT or The Royal Marsden Sarcoma MDT The London Sarcoma Service MDT or The Royal Marsden Sarcoma Service MDT are responsible for all aspects of patient care Patients under 24 will also be referred to the Teenage and Young Adults or Paediatric MDTs as appropriate when discussed at the Sarcoma MDT Patients will be referred to other teams such has rehabilitation and psychological teams where appropriate, when discussed at the Sarcoma MDT or in Outpatient Clinic London Sarcoma Service VTC Diagnostic MDT or Royal Marsden Sarcoma Service MDT - diagnosis - treatment planning Curative Intent Surgery st treatment London Sarcoma Service Treatment Review MDT or Royal Marsden Sarcoma Service MDT If post-op radiotherapy is known to be indicated, patient will meet oncologist prior to surgery if possible Neo-adjuvant chemotherapy/ radiotherapy London Sarcoma Service Treatment Review/VTC MDT or Royal Marsden Sarcoma Service MDT Surveillance Adjuvant Treatment Surgery Radiotherapy +/- Chemotherapy Surveillance See LSESN Patient Management Policy Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN SOFT T SARCOMA: TREATMENT PATHWAY OF 2 DATE VEMBER OF 29 DATE VEMBER 20

25 -c-09l London and South East Sarcoma Network ( Soft Tissue Sarcomas of the Limb and Trunk Wall : Treatment Pathway Treatment with Non-Curative Intent (patients with extensive metastatic disease) This pathway applies to patients of all ages except children. For all nonrhabdomyosarcomatous soft tissue sarcomas and extremity rhabdomyosarcomas in children discussion with the sarcoma MDT is strongly encouraged when diagnosis is suspected or recently established This pathway applies to new diagnosis and recurrences All soft tissue sarcomas of the limb and trunk wall are treated by The London Sarcoma Service MDT or The Royal Marsden Sarcoma Service MDT The London Sarcoma Service MDT or The Royal Marsden Sarcoma Service are responsible for all aspects of patient care Patients under 24 will also be referred to the Teenage and Young Adults or Paediatric MDTs as appropriate when discussed at the Sarcoma MDT The Sarcoma MDTs will engage the Specialist Palliative Care MDTs as appropriate when discussed at the Sarcoma MDT Patients will be referred to other teams such has rehabilitation and psychological teams where appropriate, when discussed at the Sarcoma MDT or in Outpatient Clinic Non-Curative Intent Surgery London Sarcoma Service/ Royal Marsden Sarcoma Service Treatment Review MDT London Sarcoma Service/Royal Marsden Sarcoma Service Diagnostic MDT - diagnosis - treatment planning Chemotherapy London Sarcoma Service/ Royal Marsden Sarcoma Service Treatment Review MDT Radiotherapy London Sarcoma Service/ Royal Marsden Sarcoma Service Treatment Review MDT Adjuvant Treatment Surgery (as appropriate) Radiotherapy +/- Chemotherapy Adjuvant Treatment Surveillance Radiotherapy +/- Chemotherapy See LSESN Patient Management Policy Surveillance Key: MDT discussion Process Clinic/Diagnostics/Treatment Important information LSESN SOFT T SARCOMA: TREATMENT PATHWAY 2 OF 2 DATE VEMBER OF 29 DATE VEMBER 20

26 Soft Tissue Sarcoma Follow-Up Pathway: London and South East Sarcoma Network ( -c-l Soft Tissue Sarcomas of the Limb and Trunk Wall: Follow Up Pathway The Royal Marsden Sarcoma Service See LSESN Follow Up Guidelines The London Sarcoma Service Completion of Surgery Completion of Multi-Modality Treatment Completion of Surgery Completion of Multi-Modality Treatment Surgical Follow-Up +/- Oncology Follow- Up at RMH Surgical Follow-Up at RH Oncology Follow-Up at UCLH +/- Surgical Follow-Up at RH (if patient has had surgery) Surveillance Suspicion of recurrence Refertothe Presentation and Diagnostic Pathway for referral process and contact points when suspected recurrence All patients are followed up at clinics within the London Sarcoma Service or the Royal Marsden Hospital Sarcoma Service Key: MDT discussion Clinic/Diagnostics/Treatment Process Important information LSESN SOFT T SARCOMA: FOLLOW UP PATHWAY OF DATE VEMBER OF 29 DATE VEMBER 20

27 Complete Soft Tissue Pathway: