Sarcoma Advisory Group Constitution

Transcription

1 Northern England Strategic Clinical Networks Sarcoma Advisory Group (SAG) Constitution 2014 Document Information Title: Sarcoma Advisory Group Constitution Author: Miss S Murray, Consultant Orthopaedic Surgeon Circulation List: Sarcoma Advisory Group Contact Details: Mrs C McNeill, Peer Review Co-ordinator claire.mcneill@nhs.net Telephone: Version History: Date: Version: v1.9 Review Date: May 2015 Document Control: Version Date Summary Review Date V Amendments to page 7 and 27 May 2015 V Reviewed and updated March

2 The Constitution has been agreed by: Position: Chair of the Sarcoma Advisory Group (SAG) Name: Miss S Murray Organisation: Newcastle upon Tyne Hospitals NHS FT Date Agreed: Position: Medical Director Name: Dr M Prentice Organisation: Cumbria, Northumberland, Tyne and Wear Area Team Date Agreed: Position: Chemotherapy Chair (14-1C-112l) Name: Mr S Williamson Organisation: Northumbria Health Care NHS FT Date Agreed: Position: Radiotherapy NSSG Chair (14-1C-102l) Name: Mr C Walker Organisation: South Tees NHS FT Date Agreed: Position: Histopathology NSSG Chair (14-1C-108l) Name: Mr P Barrett Organisation: Co Durham and Darlington NHS FT Date Agreed: SAG members agreed the Constitution on: Date Agreed: Review Date: May

3 CONTENTS PAGE INTRODUCTION... 5 STRUCTURE AND FUNCTION C-101l... 5 Network Configuration C-102l... 5 Designated Chemotherapy Services and Radiotherapy Departments C-103I... 7 Molecular Biology / Cytogenetic Facilities C-104I... 7 Sarcoma Advisory Group Membership C-105I... 7 Sarcoma Advisory Group Meetings C-106I... 7 Work Programme and Annual Report C-107I... 8 Designated Chemotherapy and Radiotherapy Practitioners C-108I... 8 Designated GIST Histopathologists... 8 CO ORDINATION OF CARE / PATIENT PATHWAYS C-109I... 9 Clinical Guidelines for Soft Tissue Sarcoma- Limb and Trunk C-110I... 9 Clinical Guidelines for Bone Sarcoma C-111I... 9 Clinical Guidelines for Soft Tissue Sarcomas Presenting to Site Specialised MDTs C-112I... 9 Chemotherapy Treatment Algorithms C-113I... 9 Patient Pathways for Initial Referral and Diagnosis for Soft Tissue Sarcoma Limb and Trunk C-114I Patient Pathways for Initial Referral and Diagnosis for Bone Sarcoma C-115I Patient Pathways and Assessment, Treatment and Follow Up for Soft Tissue

4 14-1C-116I Patient Pathways for Assessment Treatment and Follow Up for Bone Sarcoma C- 117I Patient Shared Care Pathways for Soft Tissue Sarcomas Presenting to Site Specialised MDTs C-118I Patient Experience CLINICAL OUTCOMES/ INDICATORS C-119I Clinical Outcomes Indicators and Audits C-120I Discussion of Clinical Trials Appendix 1 - Soft Tissue Sarcoma Pathway: Clinical Responsibility Appendix 2 - Bone Sarcoma Pathway: Clinical Responsibility Appendix 3 - TYA Clinical Trial Discussion Appendix 4 - Summary of Service Provision Appendix 5 Terms of Reference Appendix 6- Membership List Appendix 7 Guidelines for Teenage and Young Adults

5 INTRODUCTION The Sarcoma Advisory Group (SAG) is a multi-professional group made of health professionals from organisations across the North of England Cancer Network covering a population of 5 million. The SAG will be a source of clinical opinion and information to the Network Board. This document outlines the SAG Constitution and Terms of Reference and will be reviewed on an annual basis. STRUCTURE AND FUNCTION 14-1C-101l Network Configuration The North of England Cancer Network hosts a supra-network service which is provided by Newcastle upon Tyne Hospitals. The referral region for bone sarcomas extends further than the NECN catchment area, ie North Yorkshire. Cross Reference Newcastle upon Tyne Hospitals has two hospital sites, The Royal Victoria Infirmary and the Freeman Hospital. The sarcoma service is based at the Freeman site with the exception of some surgical procedures that require the specialist equipment and input of the plastics service at the RVI. The combined Soft Tissue and Bone Sarcoma MDT meets weekly and takes place at the Freeman Hospital. This MDT is responsible for the curative resection of bone sarcomas, soft tissue and retroperitoneal sarcoma. Also manage and treat a large number of patients with benign conditions of both bone and soft tissue. The bone sarcoma service is funded by the National Specialised Commissioning Advisory Group (NSCAG). Please see Appendix 1for summary of service provision. 14-1C-102l Designated Chemotherapy Services and Radiotherapy Departments Designated Chemotherapy Services Area wide sarcoma specific chemotherapy regimens for bone and soft tissue are delivered at The Freeman Hospital and for palliative care only at the James Cook University Hospital (JCUH) site* *Following a palliative chemotherapy request from the central MDT, a member of the central MDT will contact Dr Talal Mansey, designated Oncologist to discuss the patient s management plan. Dr Mansey will be responsible for delivery of palliative Cross 5

6 chemotherapy for Sarcoma patients at JCUH Reference Please see link for NECN approved regimen list & treatment algorithms. Designated Radiotherapy Services Area wide sarcoma specific dose/fractionation regimens will be agreed at the central MDT and delivery will be provided by one of two agreed radiotherapy sites. (The NCCC based at The Freeman Hospital and James Cook University Hospital, Middlesbrough). Please see appendix 4 for named departments. 6

7 14-1C-103I Molecular Biology / Cytogenetic Facilities Molecular genetics service is provided by the Cytogenetics Unit of the Northern Genetics Service. The histopathology service is provided by the Royal Victoria Infirmary. Please see Appendix 1 for named departments. 14-1C-104I Sarcoma Advisory Group Membership Annual Report Chair of the MDT - Shona Murray MDT lead clinician from each MDT associated with it - N/A Nurse core member is - Karen Fisher Sarcoma Surgeon- Prof Derek Manas Clinical Oncologist - Dr Daniella Lee Member responsible for ensuring recruitment into clinical trials is- Mark Verrill A Medical Oncologist Mark Verrill and Radha Todd Histopathologist -Dr Petra Dildey Patient Representative- Cuthbert Earl The NHS member nominated with specific responsibility for user issues and patients and carers is Karen Fisher Secretarial and administrative support is provided by the Network Peer Review Co-ordinator or a member of the Network administrative team. Lead Commissioner Representative responsible for bone sarcoma services-lisa Jordan In instances when user representation is non-compliant, the NHS member nominated with specific responsibility for users users and information for patients and carers will liaise directly with the designated Network Representative who has responsibility for patient and user involvement. Please see Appendix 5 for Terms of Reference. Please see Appendix 6 for NSSG Membership list. 14-1C-105I Sarcoma Advisory Group Meetings Annual Report The chair of the SAG is Miss Shona Murray and the group meet regularly. Group agreed to meet a minimum of two times a year. Date Time Location am Freeman Hospital 14-1C-106I Work Programme and Annual Report Annual Report Work The SAG will produce an annual report and work programme in discussion with the strategic clinical network (SCN) and agreed with the medical director of the relevant NHS England area team. Programme 7

8 14-1C-107I Designated Chemotherapy and Radiotherapy Practitioners Designated Chemotherapy Practitioners Area wide sarcoma specific chemotherapy regimens for bone and soft tissue are delivered at The Freeman Hospital and for palliative care only at the James Cook University Hospital (JCUH) site* *Following a palliative chemotherapy request from the central MDT, a member of the central MDT will contact Dr Talal Mansey, designated Oncologist to discuss the patient s management plan. Dr Mansey will be responsible for delivery of palliative chemotherapy for Sarcoma patients at JCUH Please see link for NECN approved regimen list & treatment algorithms. Designated Radiotherapy Practitioners The designated radiotherapy practitioners other than those that are core members of the Sarcoma MDT responsible for the delivery of radiotherapy to (i) soft tissue sarcoma patients and (ii) bone sarcoma patients, in the SAG's catchment area are : Dr Hans Van Der Voet, James Cook University Hospital 14-1C-108I Designated GIST Histopathologists The SAG, in consultation with the network Histopathology Cross Cutting Group, has named the following consultant histopathologists who and only who, are responsible for the final reporting and reviewing of the histological diagnosis of GIST in the SAG's catchment area. They are as named: Dr Petra Dildey, core member Sarcoma MDT Prof Philip Sloan, core member Sarcoma MDT Dr Babett Disep, core member colorectal MDT & UPGI Lead Pathologist Dr Stephanie Needham, core member colorectal MDT and lower GI Dr Yvonne Bury, core member liver MDT Dr Dina Tiniakos, core member of liver MDT Dr Peh Sun Loo, core member of MDT Dr Beate Haugk, core member of liver & HPB MDT Dr Anthony Darne, core member HPB They are all core members of GI related MDTs based at the tertiary referral centre. They have taken part in either the national sarcoma histopathology EQA or the national GI histopathology EQA. 8

9 CO ORDINATION OF CARE / PATIENT PATHWAYS 14-1C-109I Clinical Guidelines for Soft Tissue Sarcoma- Limb and Trunk The SAG has produced guidelines which have been agreed with review planned on an annual basis. Clinical Guidelines 14-1C-110I Clinical Guidelines for Bone Sarcoma 14-1C-111I 14-1C-112I 14-1C-113I The SAG has produced guidelines which have been agreed with review planned on an annual basis. Clinical Guidelines for Soft Tissue Sarcomas Presenting to Site Specialised MDTs The SAG has produced guidelines which have been agreed with review planned on an annual basis. Chemotherapy Treatment Algorithms The SAG, in consultation with the Network Chemotherapy Group (NCG), will agree a list of acceptable chemotherapy treatment algorithms which will be updated bi-annually. Patient Pathways for Initial Referral and Diagnosis for Soft Tissue Sarcoma Limb and Trunk Initial Referral Pathway The Cancer Services Directories from across NECN all contain the agreed Network referral proforma and all referrals will be made using this proforma to the agreed single point of contact for the service. Fax All patients newly presented with symptoms urgent or suspicious of soft tissue sarcomas of the limbs and trunk wall are referred to The Freeman sarcoma diagnostic clinic. All neck lumps will be referred to the appropriate local neck lump clinic and masses clinical judged to be lymph nodes will be referred to the appropriate site specific MDT. The Network diagnostic clinic based at Freeman will perform biopsies of ALL suspected soft tissue sarcomas for NECN. All patients with symptoms suspicious of recurrence will be referred to the Sarcoma Lead Clinician via the MDT Co-ordinator. Diagnosis Pathway The SAG has agreed an area wide diagnostic pathway for soft tissue sarcomas. Clinical Guidelines Clinical Guidelines That all biopsies should be referred either directly or for a confirmatory opinion, to a specialist sarcoma pathologist (SSP) based at the RVI, Newcastle upon Tyne Hospitals. 9

10 that all small cell sarcomas should have molecular/cytogenetic testing by the Cytogenetics Unit of the Northern Genetics Service, Newcastle upon Tyne. the imaging modalities and their specific indications as referenced in Guidelines for the Management of Soft Tissue Sarcomas Sarcoma Volume 2010, Article ID , the laboratory and histopathological/histochemical investigations and their specific indications as referenced in Guidelines for The Management of Soft Tissue Sarcomas Sarcoma Volume 2010, Article ID , If sarcoma soft tissue cancer is suspected the investigational protocols will be carried out by the Freeman Hospital. Any aspects of the process which differ between a new diagnosis and that of a recurrence will be dealt with by the team at Newcastle upon Tyne Hospitals. Please see Appendix 1 for Clinical responsibilities pathway for soft tissue. 14-1C-114I Patient Pathways for Initial Referral and Diagnosis for Bone Sarcoma The SAG has agreed an area wide diagnostic pathway for bone sarcoma which includes the following: Specific indications for imaging will be managed as detailed in the guidelines for bone sarcoma, please see link (section 4.1) Laboratory and histopathological/histochemical investigations and their specific indications will be managed at detailed in the guidelines for bone sarcoma, please see link (section 4.5) The histology will be reviewed by a SSP based at the RVI prior to treatment planning decisions being taken. If bone sarcoma cancer is suspected all investigational protocols will be carried out at the Freeman Hospital, Newcastle upon Tyne. Any aspects of the process which differ between a new diagnosis and that of a recurrence will be dealt with by the team at Newcastle upon Tyne Hospitals. 10

11 Please see Appendix 2 for Clinical responsibilities pathway for bone. 14-1C-115I Patient Pathways and Assessment, Treatment and Follow Up for Soft Tissue The SAG have adopted the pathway illustrated in Appendix 1, which details which teams are responsible for which aspects of care and the stages in the pathway they relate to including recurrences. Patients will be clinically managed in accordance with the following guidelines : The Sarcoma team work collaboratively with other cancer centres to treat rare benign conditions, eg neurofibromatosis. All patient follow up is managed by the Sarcoma MDT at Newcastle upon Tyne Hospitals; there are no shared care pathways within NECN. Patients that receive palliative chemotherapy at JCUH, Middleborough under Dr Mansey (designated chemotherapy practitioner) will still have follow up at the Freeman Hospital. Patients that receive radiotherapy at JCUH, Middlesbrough under Dr Hans Van Der Voet (designated radiotherapy practitioner) will still have follow up at the Freeman Hospital. GPs suspicious of recurrence will follow the GP referral process and can access specialist advice from the specialised sarcoma MDT by contacting the Freeman Hospital on Nationally there are no agreed follow up guidelines. As the spectrum of sarcoma cancers include many rare diagnoses, these patients are followed up indefinitely or at the discretion of the treating consultant. Rehabilitation and prosthetics play a key role in the follow up and after care of sarcoma patients. 14-1C-116I Patient Pathways for Assessment Treatment and Follow Up for Bone Sarcoma The Cancer Services Directories from across NECN all contain the agreed Network referral proforma and all referrals will be made using this proforma to the agreed single point of contact for the service. Fax Patients with x-rays and/or clinical symptoms suspicious of 11

12 primary bone sarcoma are referred to the combined Sarcoma MDT based at the Freeman Hospital. Referral to the combined sarcoma MDT should also be made for patients diagnosed postoperatively with a previously unsuspected bone sarcoma. (contact number ). All small cell sarcomas will have molecular/cytogenetic testing using the service provided by Cytogenetics Unit of the Northern Genetics Service. The histopathology service is provided by the Royal Victoria Infirmary. All patients with symptoms suspicious of recurrence will be referred to the Sarcoma Lead Clinician via the MDT Co-ordinator. The SAG have adopted the pathway illustrated in Appendix 2, which details which teams are responsible for which aspects of care and the stages in the pathway they relate to including recurrences. Patients will be clinically managed in accordance with the following guidelines : All patient follow up is managed by the Sarcoma MDT at Newcastle upon Tyne Hospitals; there are no shared care pathways within NECN. Patients that receive radiotherapy at JCUH, Middlesbrough under Dr Hans Van Der Voet (designated radiotherapy practitioner) will still have follow up at the Freeman Hospital. GPs suspicious of recurrence will follow the GP referral process and can access specialist advice from the specialised sarcoma MDT by contacting the Freeman Hospital on Nationally there are no agreed follow up guidelines. As the spectrum of sarcoma cancers include many rare diagnoses, these patients are followed up indefinitely or at the discretion of the treating consultant. 14-1C- 117I Rehabilitation and prosthetics play a key role in the follow up and after care of sarcoma patients. Patient Shared Care Pathways for Soft Tissue Sarcomas Presenting to Site Specialised MDTs MDT Leads for the following site specialist groups, upon suspicion of appropriate soft tissue sarcoma cases will be responsible for contacting the Sarcoma MDT lead at the Freeman Hospital on Upper GI sarcomas - Prof D Manas Gynaecological sarcomas - Christine Ang (pathology 12

13 discussion between sites) Head and neck, soft tissue sarcomas - Mr M Ragbir, Plastics Skin sarcomas - Dr F Charlton/Mr O Ahmed Breast sarcomas - Mr A Griffiths/Dr M Verrill/Dr D Lee Lung sarcomas Mr S Barnard Urological sarcomas Mr E Paez Colorectal sarcomas Mr P Hainsworth Retroperitoneal sarcomas Prof D Manas/Mr J French Patients will be managed in accordance with the following guidelines: Shared surgical intervention will be agreed and managed by the appropriate site specific surgeon and a specialist sarcoma surgeon. It is common practice to hold parallel clinics with all treating consultants for complex surgery. This reduces the need for duplicate appointments and improves the patient pathway/experience. Follow up will be managed to an agreed pathway based on individual patient requirements. All new cases of soft tissue sarcoma not diagnosed initially by SSP will have histological review at the RVI, Newcastle by SSP and proposed cases of GIST will be reviewed by one of the designated GIST pathologists for the area. All retroperitoneal sarcomas will be managed by the Sarcoma MDT. 1. Gynaecological Sarcomas a. There is liaison with the MDT Co-ordinator of the Gynaecological Oncology Service at the Queen Elizabeth Hospital, Gateshead and James Cook University Hospital, Middlesbrough. b. Patients are referred to the Bone & Soft Tissue MDT for discussion directly from the MDT Co-ordinators or from individual core members of their MDT. Early feedback of the minutes by fax (and if necessary by telephone) are ensured. This is generally on the same day as the MDT. Occasionally individual clinicians will attend the Sarcoma MDT if they wish to highlight specific issues. 2. Upper GI Sarcoma a. As above a link is established between the respective 13

14 MDT Co-ordinators in order to expedite discussion. In addition a number of the extended (General Surgical) members of the Sarcoma MDT act as a link initiating the discussion of the individual patient in the first place and ensuring there is appropriate feedback. b. Again the responsible clinician frequently attends the Sarcoma MDT and in any event the minutes are transmitted back the same day by fax and or telephone. 3. Head & Neck Soft Tissue Sarcoma These lesions may be referred from within Newcastle or beyond and again the referral will involve the respective MDT Coordinators. Mr Ragbir Consultant Plastic Surgeon who is one of the core members of the Sarcoma Group could be regarded as the link person in as much as he also attends the Newcastle based Head & Neck MDT. 4. Skin Sarcoma Skin sarcomas may be referred in from the Dermatology MDT or occasionally from Plastic Surgeons out with the Newcastle area. This situation would in any case initiate a cross discussion with the Skin MDT and involvement of their Co-ordinator too. Again the MDT minutes of the Sarcoma Group are promptly returned. 5. Breast Sarcoma May be referred in for discussion from disparate sites. This may be from the Breast Services themselves or other General Surgeons either within Newcastle or beyond. We would ensure that in any event they were also discussed at the appropriate Breast MDT and that the patient s subsequent management would be under the care of a Surgeon who had sarcoma experience. In most circumstances patients with breast sarcoma have been managed by our two core Plastic Surgeon members. 6. Lung Sarcoma Mr Barnard Consultant Thoracic Surgeon is one of the extended members of our MDT and generally when a lung sarcoma is being discussed he will be present. On those occasions when he is absent - on holiday etc, his comments and view will be added to the minutes at the earliest opportunity. A named deputy is also always available if required. Such patients will also be discussed at the Thoracic Surgical 14

15 MDT and with liaison between the respective MDT Co-ordinators. 7. Urological Sarcoma Sarcomas arising in the urinary tract are also not infrequently referred for discussion generally from different Urology Surgery Centres around the region. Again the principle is the same, viz there will be discussions between the MDT Co-ordinator from Urology and the Sarcoma MDT Co-ordinator and arrangements made for prompt return of the outcome of the MDT meeting. Frequently the responsible clinician (generally the Consultant Urologist) will be present at the meeting to outline the clinical details. Mr Johnson Consultant Urologist at the Freeman Hospital is our main link person with Urology Services. 8. Colorectal (Lower GI) Sarcoma Mr Hainsworth, Consultant Colorectal Surgeon is one of the extended members of the Sarcoma MDT and where possible we would ensure that he was present at the meeting when any patient with a pertinent sarcoma needed to be discussed. He would thereafter in addition to the normal dissemination of the minutes liaise directly with the individual clinician responsible for the patient under discussion. As well as the above groups we also have occasional referrals from the Neurosurgeons eg. to discuss a patient with an osteosarcoma of skull bone. The same principles would apply as above ie. Liaison with the relevant MDT Co-ordinator and a prompt return of the minutes from the discussion. More often than not however the Consultant Neurosurgeon responsible for the individual patient would also attend our MDT. There are some circumstances where the discussion of a patient at the MDT may have been initiated as a consequence of cross referrals between Pathologists, particularly in seeking a second opinion regarding a definite diagnosis. In those circumstances we would ensure that our MDT Coordinator made contact with any other appropriate MDT Coordinator and that the clinician or clinicians responsible for the particular patient were made aware of the pending discussion and in every circumstance given the opportunity to attend the meeting should they so wish. 9. Retroperitoneal Sarcoma Patients with retroperitoneal sarcomas are referred directly to the soft tissue sarcoma service, usually via fax to the agreed single point of contact FAX Ruth Christer 15

16 PATIENT EXPERIENCE (retroperitoneal sarcoma nurse specialist) identifies these patients and immediately discusses them with either retroperitoneal sarcoma surgeon Professor DM Manas (DMM) or Mr JJ French (JJF). The patients are then discussed at the next sarcoma MDT. DMM and or JJF will be present at the weekly sarcoma MDT to present the case. If it is appropriate the patient will be seen in the next DMM or JJF outpatient clinic. DMM and JJF work as a single team and manage patients on this basis. Minutes from the MDT are transmitted back to the referring clinician the same day as the MDT. In addition, it has been agreed that any patient with metastatic carcinoma of unknown origin should be referred on for discussion by the carcinoma of unknown primary MDT. 14-1C-118I Patient Experience Annual Report In the course of their regular meetings, the NSSG will annually review patient feedback of their associated MDTs and any actions implemented, and agree an improvement programme with them. CLINICAL OUTCOMES/ INDICATORS 14-1C-119I Clinical Outcomes Indicators and Audits Annual Report Work In the course of regular meetings, the NSSG will annually review the progress (or discuss the completed results, as relevant), of their associated MDTs' outcome indicators and audits, which should have been carried out, or the data examined across all its associated MDTs: Programme Any Sarcoma cancer outcome indicators for hospital practice, required by the Commissioning Outcomes Framework (COF) Clinical indicators Please see the MDS policy and Information Sharing Protocol on NECN website at: C-120I Discussion of Clinical Trials There is only one Sarcoma MDT that reports to the SAG. Annual Clinical Trials discussion has previously taken place at the annual business meeting of the MDT. Annual clinical trials discussion will now take place at a meeting of the SAG. This discussion will include: the MDT s response to the approved clinical trials; the MDT s recruitment into clinical trials and other well designed studies. As a minimum requirement, the following people will be present at this Annual Report / Work Programme 16

17 discussion: the Chair or a nominated representative, the NSSG research lead, the lead clinician of the MDT or nominated representative from that MDT, the clinical lead of the research network or a nominated representative. The SAG and the clinical lead of the research network will agree a programme for improvement for recruitment into approved trials and other well designed studies. Current recruitment levels and the available trials will be a standing agenda item at each meeting of the SAG as will the programme for improvement. See Appendix 3 for Teenage and Young Adult Clinical Trials Discussion. 17

18 Appendix 1 - Soft Tissue Sarcoma Pathway: Clinical Responsibility (14-1C-113l,14-1C-115l,) Referral pathway (11-2L-124) Diagnostics pathway (11-2L-126) Treatment pathway (11-1C-101I) TYA MDT incl. SPC Patients attends GP GP Suspects soft tissue sarcoma GP Referral sent to Specialist soft tissue sarcoma MDT FRH Triple assessment Diagnostics including biopsy Specialist Soft Tissue Sarcoma MDT FRH Radiotherapy GP Surgery GP unsure discuss with Soft Tissue Specialist FRH GP GP responsible clinician Chemotherapy GP Local Hospital incidental finding of soft tissue sarcoma Diagnosing clinician Specialist MDT Lead responsible Diagnosing clinician responsible Treating Clinician responsible Teenage & Young Adult MDT Supportive & Palliative Care Supportive & Palliative Care 18

19 Appendix 2 - Bone Sarcoma Pathway: Clinical Responsibility (14-1C-114l, 14-1C-116l)) Referral pathway (11-2L-124) Diagnostics pathway (11-2L-126) Treatment pathway (11-1C-110l) TYA MDT incl. SPC Patients attends GP GP Suspects bone cancer GP Referral sent to Specialist Bone MDT FRH Diagnostics including biopsy Referral sent to Specialist Bone MDT FRH Radiotherapy GP Surgery GP unsure discuss with local Orthopaedic specialist GP Diagnosing clinician Small Cell Sarcomas Chemotherapy GP Local Hospital Orthopaedic clinic including Xray Diagnosing clinician Hospital non Cancer specialty incl. Radiology incidental findings suspect Bone cancer Cytology lab Molecular lab Supportive & Palliative Care GP responsible clinician Specialist MDT Lead responsible Diagnosing clinician responsible Treating Clinician responsible Teenage & Young Adult MDT Supportive & Palliative Care 19

20 Appendix 3 - TYA Clinical Trial Discussion TYA Peer Review Measure The [include name of site specific] MDT acknowledges the NECN TYA open Clinical Trials portfolio and agrees to offer patients aged years the opportunity to participate in clinical trials where relevant. It is recognised, as per the NUTH Primary Treatment Centre Children and Young People s Cancer Pathway, that all patients aged years are managed within Paediatric and Adolescent Oncology Services at the Royal Victoria Infirmary, Newcastle. It is recognised that clinical trials recruitment for patients in the TYA age range has historically been poor across the UK for a variety of reasons. In light of the regional recruitment data from the last year, the MDT will continue to maintain awareness of the TYA clinical trials portfolio and seek to increase recruitment figures. All patients aged years will be discussed at the TYA MDT at first diagnosis and in the event of relapse/recurrence/progression to consider their potential eligibility for participation in clinical trials. In the event of an eligible patient not having access to a relevant clinical trial at their local hospital, it is important that the patient is still offered the choice of participating in the trial and receiving treatment in this context at the NUTH Primary Treatment Centre or a TYA Designated Hospital who have the clinical trial open. Each Site Specific MDT will provide an annual written summary of TYA clinical trials recruitment to their respective NSSG and programme of improvement will be agreed. Peer measure 11-7A-211 states that the Children and Young People s Co-ordinating Group (CYPCG) will discuss the report from each Site Specific MDT on an annual basis. Therefore, it is suggested that a representative from the CYPCG should attend the NSSG annual clinical trials discussion in relation to the agreed list of TYA trials, recruitment and programme of improvement. 20

21 Appendix 4 - Summary of Service Provision Measure Location Bone 14-1C-101I Network Sarcoma MDT Newcastle FRH 14-1C-101I Curative resection Newcastle FRH 14-1C-101I Retroperitoneal resection Newcastle FRH 14-1C-102I Sarcoma Advisory Group Newcastle FRH 14-1C-113I Diagnostic clinics Newcastle FRH 14-1C-102l Designated Chemotherapy Delivery Units Newcastle NCCC (FRH) 14-1C-102l S Tees JCUH* 14-1C-102l Designated Radiotherapy Delivery Units Newcastle NCCC (FRH) 14-1C-102l S Tees JCUH Cytogenetics, Northern Genetics 14-1c-103l Designated laboratories Service Soft Tissue * palliative care setting only 21

22 Appendix 5 Terms of Reference North of England Cancer Network Network Site Specific Group (NSSG) Terms of Reference June Role and Purpose of Site Specific Group The role of NSSG is clearly outlined in the Manual of Cancer Services Quality Measures The NSSG should be multi-disciplinary; with representation from professionals across the care pathway; involve users in their planning and review; and have the active engagement of all MDT leads from the relevant associated organisations. The NSSG should: agree a set of clinical guidelines and patient pathways to support the delivery of high quality equitable services across the network review the quality and completeness of data, recommending corrective action where necessary produce audit data and participate in open review ensure services are evaluated by patients and carers monitor progress on meeting national cancer measures and ensure actions following peer review are implemented review and discuss identified risks/untoward incidents to ensure learning is spread agree a common approach to research and development, working with the network research team, participating in nationally recognised studies whenever possible. Responsibilities of the MDT Lead Clinician The MDT lead clinician should: ensure that designated specialists work effectively together in teams such that decisions regarding all aspects of diagnosis, treatment and care of individual patients and decisions regarding the team's operational policies are multidisciplinary decisions ensure that care is given according to recognised guidelines (including guidelines for onward referrals) with appropriate information being collected to inform clinical decision making and to support clinical governance/audit ensure mechanisms are in place to support entry of eligible patients into clinical trials, subject to patients giving fully informed consent overall responsibility for ensuring that the MDT meetings and team meet peer review quality measures ensure attendance levels of core members are maintained, in line with quality measures provide the link to the NSSG either by attendance at meetings or by nominating another MDT member to attend ensure MDT's activities are audited and results documented ensure that the outcomes of the meeting are clearly recorded, clinically validated and that appropriate data collection is supported. 22

23 NSSG Chair, Roles and Responsibilities The Network Site Specific Group (NSSG) Chair has overall responsibility for the development of co-ordinated, cohesive and integrated networked cancer services for a specific tumour site. This will be achieved primarily by ensuring that the NSSG operates efficiently and effectively to facilitate these developments across the network. Specifically, the Chair should: ensure the group is properly represented by all the key stakeholders operating in the care of the specific tumour site work with NECN to ensure all Trusts in the network are involved and primary care is appropriately represented. aim to ensure groups are multi-professional in nature. take responsibility for delivering on the terms of reference for the Group. ensure that systems and processes are in place to: o review (and update) local and national standards o collect minimum cancer data sets o support accreditation/quality assurance o agree common audits and bench marking o agree R&D programme/common clinical trials o facilitate user involvement in the development of services ensure that any Tumour specific issues of clinical governance are supported by adequate protocols across the network organise NSSG meetings at least twice a year prepare the agenda for and chair NSSG meetings ensuring that adequate time is allowed for each item under discussion and stakeholders views are sought ensure that minutes and action notes are circulated to the wider network as appropriate ensure a vice chair is nominated. This would support succession planning and help in attending various meetings agree and publish the NSSG Annual Report and work programme lead discussions with other NSSGs on issues of common interest. Vice Chair The NSSG Chair is a challenging role. Good practice would be Chair and Vice Chair (preferably one from North and one from South) this would support succession planning. Nomination and Selection Process Nominations for Chair and Vice Chair to come from the NSSG followed by a selection process. 23

24 Term of Office 2 years with an option to a further 2 years (maximum 4 years Term of Office). The chair and the vice chair may agree to switch role after 1-2 years. Support employing Trust the chair must secure its own Trust support to undertake the role the role must be reflected in Job Plan as 0.5 PA per month NECN staff/ team Ground Rules for Networking Introduction These ground rules preserve the principles underpinning clinical networking. The principles may be summarised as follows: they prevent destructive competition between MDTs for their catchment populations they prevent destructive competition between NSSGs for their associated MDTs they allow the development of consistent, intra- and inter-team patient pathways which are clinically rational and in only the patients' best interests instead of in the vested interests of professional groups or of NHS statutory institutions. Before a first peer review assessment of any services which, from the networking point of view, come under the governance of a strategic clinical network (SCN), there should be an agreement between the relevant SCNs which describes which provider and commissioner networks come under the governance of each particular SCN. The agreement should delineate the boundaries and list the constituent services and commissioners of those networks. On principle, a single SCN should be agreed as being responsible for the network. This specifies the governance framework within which the networks are placed. Ideally this would apply to all services in a geographical area. However, the arrangements in terms of the governance and ownership of staff and facilities may not be coterminous across different disease sites spread over a similar geographical area. The network function will therefore be reviewed at a disease site specific level. The term 'network' in these measures refers to the disease site clinical network unless otherwise specified. The geographical extent of this and the physical facilities and hospital sites involved should be agreed between the relevant SCNs prior to review, and a named SCN should be considered having ownership and requiring/commissioning the review. This principle becomes especially important for cases of clinical networks for the rarer cancers where catchment areas may overlap those of more than one SCN. NSSGs the NSSG should be the only such NSSG for the MDTs which are associated with it for cancer sites where there is only one level of MDT, the NSSG should be associated with more than one MDT for cancer sites where there is a division into more than one level of MDT, i.e. into local and specialist/supranetwork MDTs, the NSSG need only be associated with one specialist/supranetwork MDT as long as it is associated with more than one MDT for the cancer site overall. 24

25 Notes: The NSSG need only be associated with one specialist/supranetwork type MDT but may be associated with more than one. Cross Cutting Groups These currently include network groups for: chemotherapy radiotherapy acute oncology These groups need to have working relationships with the hospitals/services system and also the NSSGs /MDTs system, if they are to fulfil their role of acting as leaders of the networking process. Because these groups are service specific, not cancer site specific, it seems most important to lay down ground rules to ensure clarity and co-ordination across a given cross cutting service within a network, and leave ground rules regarding the relationship with NSSGs/MDTs, at a more informal and flexible level. The term 'network' here refers to the networking arrangements and coverage of the service in question. These services are required to have local multi-professional management teams. These are not equivalent to the site specific groups and are treated differently in the measures. The ground rules for MDTs do not apply to them. The network group for a given service should be the only such group for that service for all the hospitals/services it is associated with. The equivalent reciprocal ground rules to this for hospitals and services would be; any given hospital should be associated with only one network group for any given service, and any service should be associated with only one network service group. Note: Hospitals and services are mentioned separately because, for the purposes of peer review and data gathering, it has been necessary to clearly define individual services and delineate their boundaries in terms of staff and facilities. Sometimes a declared 'service' may cross more than one hospital. MDTs For MDTs dealing with cancer sites for which the IOG and measures recommend only one level of MDT (i.e.no division into local and specialist or their equivalent. e.g. Breast MDTs): The MDT should be the only such MDT for its cancer site, for its catchment area. Notes: The principle of a given primary care practice agreeing that patients will be referred to a given MDT is not intended to restrict patient or GP choice. A rational network of MDTs, rather than a state of destructive competition can only be developed if i) there is an agreement on which MDT the patients will normally be referred to and ii) the resulting referral catchment populations and /or workload are counted, for planning purposes. It is accepted that individual patients will, on occasion, be referred to different teams, depending on specific circumstances. This ground rule does not apply to the carcinoma of unknown primary (CUP) MDT or the specialist palliative care (SPC) MDT. This is because, for this ground rule to be implementable, it is necessary to define a relevant disease entity in terms of objective diagnostic criteria which governs referral at primary care level. This is not possible for CUP or SPC, by the nature of these practices. 25

26 The MDT should be the only such MDT for its cancer site on or covering a given hospital site. Note: This is because for patient safety and service efficiency, there should be no rival individuals or units working to potentially different protocols on the same site. This does not prevent a given MDT working across more than one hospital site. Neither does it prevent trusts which have more than one hospital site, having more than one MDT of the same kind, in the trust. This ground rule does not apply to SPC MDTs, since there may be more than one distinctive setting for the practice of SPC on a single given hospital site. The MDT should be associated with a single named network site specific group (NSSG) for the purposes of coordination of clinical guidelines and pathways, comparative audits and coordination of clinical trials. Note: MDTs which are IOG compliant but deal with a group of related cancer sites, rather than a single site, may be associated with more than one NSSG, but should have only one per cancer site. e.g. A brain and CNS tumours MDT also dealing with one or more of the specialist sites such as skull base, spine and pituitary could be associated with a separate NSSG for each of its specialty sites. For cancer sites for which there is a division into local, specialist and in some cases, supranetwork MDTs, the following apply to the specialist/supranetwork MDTs. The above ground rules still apply to the 'local' type MDTs The specialist/supranetwork MDT should be the only such specialist/supranetwork MDT for its cancer site, for its specialist/supranetwork referral catchment area The specialist/supranetwork MDT should be the only such specialist/supranetwork MDT for its cancer site on or covering a given hospital site The specialist MDT should act as the 'local' type MDT for its own secondary catchment population. If a supranetwork MDT deals with potentially the whole patient pathway for its cancer site, this ground rule applies to the supranetwork MDT. If it deals with just a particular procedure or set of procedures, not potentially the whole patient pathway, it does not apply. Note: This is in order that the specialist/supranetwork MDT is exposed to the full range of clinical practice for its cancer site. The specialist MDT should be associated with a single named network site specific group (NSSG), (or possibly one per individual cancer site, as above) for the purposes of coordination of clinical guidelines and pathways, comparative audits and coordination of clinical trials. Review Date: June

27 Appendix 6- Membership List Designation as required by Peer Review Lead Deputy Chair of the MDT Shona Murray Craig Gerrand MDT lead clinician from each MDT associated with it N/A N/A A nurse core member of an MDT associated with it Karen Fisher A Sarcoma Surgeon Prof Derek Manas Mr J French A Clinical Oncologist Dr Daniella Lee Dr Emma Lethbridge Clinical Trials Lead Mark Verrill Rhada Todd A Medical Oncologist Mark Verrill Rhada Todd Histopathologist Dr Petra Dildey Dr Philip Sloan Two user Representatives Cuthbert Earl Philip Harrison Named member as patient and carer advocate Karen Fisher - Named secretarial/administrative support Claire McNeill Lead Commissioner representative responsible for bone sarcoma services Lisa Jordan Extended Membership Core Consultant Surgeon, NUTH Core Consultant Plastic Surgeon Mr M Ragbir Mr R Milner Core Additional Surgeons Paul Hainsworth Sean Barnard Cancer Services Manager, Newcastle upon Tyne Hospitals Michelle Mangan Louise Hobson N Cumbria Hospitals Trust representative Dr Anil Kumar Northumbria Health Care FT representative Dr Mumtaz Hayat Gateshead Health NHS FT representative Kevin Clarke City Hospitals Sunderland FT representative Melanie Robertson South Tyneside FT representative Dr Oliver Schulte County Durham & Darlington NHS FT representative Iain Bain North Tees & Hartlepool NHS FT representative Mr Mohamed Tabaqchali South Tees Hospitals FT representative Dr Hans Van der Voet South Tees Hospitals FT representative Dr Talal Mansey 27

28 Appendix 7 Guidelines for Teenage and Young Adults NSSG GUIDELINES FOR TEENAGE AND YOUNG ADULTS Teenage and Young Adults Peer Review Measures Topic 11-1C (Functions of the Network Site Specific Groups for TYA) 1. Teenage and Young Adult Pathway for initial Management The NSSG has received the document named NECN Teenage and Young Adult Cancer Pathway Guidance Paper and agrees to follow the generic TYA Pathway with any site specific variations to be documented. Please see Appendix 1 for pathway. 2. Teenage and Young Adult Pathway for Follow up on completion of first line treatment Patients aged years will adopt the site specific adult follow up pathway on completion of first line treatment. It is acknowledged by both the CYPCG and NSSGs across NECN that further work is required to develop these pathways for this age group and partly in response a TYA working group has been established to take this work forward. If advice is required regarding the follow up care of a year old patient, then the Lead TYA Clinician at the designated hospital or PTC should be contacted. Please see Appendix 2 for contact details. Patients age years will continue to adopt the paediatric and adolescent follow up protocol of the PTC and all advice should be sought direct from the On Call Paediatric Oncologist at Royal Victoria Infirmary Paediatric Follow Up Protocols can be found on the CCLG website (2005 second edition) with the exception of trial specific protocols which can be requested via the Children s Trial Co-ordinator based at the RVI. 3. Pathways for cases involving Specialised NHS services (Only Gynae and Sarcoma) The Gynae NSSG and SAG reviewed and agreed the Specialised NHS Service pathway for patient s age years. This is attached in Appendix 3. 28

29 Appendix 1 Teenage and Young Adult Pathway for initial Management 29

30 Appendix 2 Contact Details List of designated MDTs at Principal Treatment Centre and TYA Designated Hospitals (19-24 years) Name of NHS Trust and designated hospital site Name of MDT TYA Lead Clinician TYA Lead Nurse Contact Number All MDTs: Breast Colorectal Gynaeoncology (diagnostic) Haematology Head & Neck Lung Principal Treatment Centre Neurooncology (Brain/Spinal, Pituitary, Skull Base) Sarcoma Specialist Skin Specialist pancreatic Supra T-cell Lymphoma Teenage and Young Adult MDT Testicular Thyroid Specialist Upper GI Specialist Urology Dr Emma Lethbridge Gateshead Health NHS Foundation Trust - at Queen Elizabeth Hospital Specialist Gynaeoncology Ms Christine Ang Suzanne Brand suzanne.brand@nuth.nhs.uk Alison Guest alison.guest@ghnt.nhs.uk City Hospitals Sunderland NHS Foundation Trust - at Sunderland Royal Hospital North Tees and Hartlepool NHS Foundation Trust - at University Hospital of North Tees South Tees Hospital NHS Foundation Trust - at James Cook University Hospital North Cumbria University Hospitals NHS Trust at Cumberland Infirmary Carlisle and West Cumberland Hospital in Whitehaven Haematology Specialist Urology (testicular only ) All MDTs: Haematology Local Urology Thyroid Breast Colorectal Lung Local Upper GI All MDTs: Specialist Gynaeoncology Breast Colorectal Haematology Head & Neck Lung Neurooncology Specialist Skin Thyroid Specialist Upper GI Specialist Urology All MDTs: Breast Lung Colorectal Local Gynae MDT Local Upper GI MDT Local Urology MDT Local Skin MDT Dr Scott Marshall Dr Philip Mounter Dr Dianne Plews Faye Laverick faye.armstrong@chsft.nhs.uk Kat Dawson Katherine.Dawson@nth.nhs.uk (temporary until March/April 2013) Jill Linton jill.linton@stees.nhs.uk Dr Jonathan Nicoll VACANT

31 Appendix 3 NHS Specialised Services Pathway 31

32 32