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1 Anglia Cancer Network Configuration of Sarcoma Services Please note this document has only been partially approved. For further details, approvals and version control please see Document Management Record on page 12 and 13. Ref No: AngCN-SSG-Sa9 Page 1 of 14

2 Contents 1 Introduction 3 2 Context 3 3 Configuration of Sarcoma Services 3 4 Bone Sarcomas (11-1A-103l) 3 5 Soft Tissue Sarcomas (Limb and Trunk) (11-1A-103l) Location of Sarcoma Diagnostic Clinics (11-1A-104l) 6 6 Soft Tissue Sarcomas (Site Specific) 6 7 Paediatric Sarcomas 7 8 Designated Chemotherapy Services (1A-105l) Designated Radiotherapy Services (1A-106l) 7 9 Designated Pathology Services (1A-107l) 7 10 The Sarcoma Advisory Groups 8 11 Appendix Evidence of Agreement 12 Page 2 of 14

3 1 Introduction The Anglia Cancer Network Sarcoma Service has been developed in order to deliver cancer services in accordance with the National Institute for Health and Clinical Excellence (NICE) Improving Outcomes Guidance (IOG) for People with Sarcoma (2006) and the subsequent National Cancer Action Team (NCAT) Manual for Cancer Services: Sarcoma Measures (2011). This document has been developed to specify the configuration of sarcoma services within Anglia Cancer Network in order to demonstrate compliance with the above standards. 2 Context The Anglia Cancer Network Sarcoma Service provides the planning and delivery of high quality care to patients within Norfolk, Great Yarmouth and Waveney, Suffolk, Cambridgeshire, Peterborough and Bedfordshire PCTs. The current catchment population for the Anglia Cancer Network comprises the populations of its constituent PCTs, as follows: Table (i) PCT Population NHS Bedfordshire (in Anglia Cancer Network) 388,776 NHS Cambridgeshire 616,300 NHS Great Yarmouth & Waveney 214,700 NHS Norfolk 765,100 NHS Peterborough 173,400 NHS Suffolk 602,000 TOTAL 2,760,276 Source: ONS mid 2010 population estimates 3 Configuration of Sarcoma Services The configuration of sarcoma services within Anglia was agreed by the Network Board and the East of England SCG in 2008 prior to submission to the National Cancer Action Team. The Anglia Cancer Network does not currently host a sarcoma MDT and all pathways for curative resection are out of the network. The 2008 Network Action Plan confirmed the networks intention to refer all patients with bone cancer to the Royal Orthopaedic Hospital (ROH) Birmingham. The plan also confirmed that all soft tissue referrals via Cambridge University Hospitals Foundation Trust will be referred to Birmingham and that patients referred via the network s other two cancer centres Ipswich Hospital (IHT) and Norfolk and Norwich University Hospital (NNUHFT) will continue to refer to the Royal Marsden Hospital (RMH) and the London Sarcoma Service, which is provided jointly by the Royal National Orthopaedic Hospital and University College London (RNOH/UCLH). In addition it was agreed that two IOG compliant diagnostic centres would be set up to help the earlier diagnosis of soft tissue sarcomas. 4 Bone Sarcomas (1A-103l) Currently the preferred Network pathway for all patients with a suspected or confirmed bone sarcoma is referral directly, or via their local Trust, to the Royal Orthopaedic Hospital (ROH) in Birmingham. This is confirmed in the Network agreed pathway for bone sarcomas, which can be found in Appendix 1. Page 3 of 14

4 Once referred to ROH Birmingham, patients come under the care of the ROH Sarcoma MDT. This MDT covers the following catchment areas and tumour types: Table (ii) ROH Sarcoma MDT Tumour types covered Bone sarcoma and soft tissue sarcoma of the limb and proximal trunk Receives referrals from Population Pan Birmingham Cancer Network 1,865,695 3 Counties Cancer Network 1,017,912 Greater Midlands Cancer Network 1,867,334 Arden Cancer Network 969,069 Anglia Cancer Network 2,555,572 TOTAL 8,275,582 Source: 2001 Census Populations In line with IOG and Peer Review Guidance, patients from Anglia who receive treatment for bone sarcomas under the ROH MDT may receive chemotherapy or radiotherapy outside of the centre. Please refer to sections 7 and 8 for further details. 5 Soft Tissue Sarcomas (Limb and Trunk) (1A-103l) There are currently two pathways in place within Anglia for patients with soft tissue sarcoma of the limb or proximal trunk. Patients from the east of the network are currently referred to the Royal Marsden and patients from the west of the network are referred to the ROH in Birmingham, as follows: Table (iii) PCT in which 2WW referral for suspected STS is generated NHS Bedfordshire (North) NHS Cambridgeshire NHS Peterborough NHS Suffolk (West) NHS Great Yarmouth and Waveney NHS Norfolk NHS Suffolk (East) Network designated Trust for assessment and diagnosis (Diagnostic Clinics) CUHFT NNUHFT Supra Regional Centre for referral ROH Birmingham The Royal Marsden, London Page 4 of 14

5 In addition to the above 2WW referral routes, Trusts may refer patients to the designated Diagnostic Clinics (if further diagnostics or investigations are required) OR they may refer the patient directly to the Supra-Regional Centre if STS of the limb/trunk is suspected, as follows: Table (iv) Patient seen at local Trust Bedford CUHFT Hinchingbrooke Peterborough WSH IHT JPUHFT NNUHFT QEHKL If further diagnostics are required: Network designated Trust for assessment and diagnosis (Diagnostic Clinics) CUHFT NNUHFT If STS is highly suspected: Supra Regional Centre for referral ROH Birmingham The Royal Marsden, London As detailed in section 4 (Table ii), the ROH in Birmingham provides a combined bone and soft tissue sarcoma diagnostic and treatment service. This MDT services a population of approximately 8.2 million for both bone and limb and trunk soft tissue sarcoma. The Sarcoma Centres of the Royal Marsden Hospital (RMH) and University College Hospital/Royal National Orthopaedic Hospital (UCH/RNOH) have combined to provide The London and South East Sarcoma Network. Within this Network there are two MDTs which collectively cover the following catchment areas and tumour types: Table (v) The London and South East Sarcoma Network (2 MDTs) Tumour types Receives referrals from covered Bone sarcoma and all soft tissue sarcomas, including retroperitoneal Population North London Cancer Network 1,449,475 North East London Cancer Network 1,495,174 North West London Cancer Network 1,732,020 South East London Cancer Network 1,488,199 South West London Cancer Network 1,505,301 Kent & Medway Cancer Network 1,579,206 Sussex Cancer Network 1,133,262 Surrey, West Sussex and Hampshire CN 1,179,056 Anglia Cancer Network * 1,277,786 Mount Vernon Cancer Network 1,218,348 Essex Cancer Network 1,343,192 Central South Coast Cancer Network 1,904,995 Dorset Cancer Network 692,712 Avon, Somerset & Wiltshire Cancer 1,800,313 Network TOTAL 19,799,039 Source: 2001 Census Populations * Total Anglia population is 2,555,572 which has been halved to reflect approximate pathways In line with IOG and Peer Review Guidance, patients from Anglia who receive treatment for soft tissue sarcomas of the limb and trunk under the ROH MDT or the London MDT may receive chemotherapy or radiotherapy outside of the centre. Please refer to sections 7 and 8 for further details. The network patient pathway for Soft Tissue Sarcoma patients can be found in Appendix 1. Page 5 of 14

6 5.1 Location of Sarcoma Diagnostic Clinics (1A-104l) The overriding principle of the IOG is that any patient with a suspected or possible STS needs to follow a clear and rapid pathway to diagnosis, and those with a confirmed sarcoma need to be referred promptly to a sarcoma treatment centre for further management. In order to achieve the Anglia Cancer Network have set up two diagnostic clinics for the assessment and diagnosis of soft tissue sarcomas of the limbs and proximal trunk. As shown in Table (iii) these are the CUHFT Diagnostic Clinic for the West and the NNUHFT Diagnostic Clinic for the East of the Network. The catchment populations for the two diagnostic clinics are as follows: Table (vi) Network Diagnostic Clinics CUHFT NNUHFT Lead Clinician Referring PCT Catchment Population Helena Earl NHS Bedfordshire (North) 388,776 NHS Cambridgeshire 616,300 NHS Peterborough 173,400 NHS Suffolk (West)* 301,000 Total 1,479,476 NHS Great Yarmouth and Waveney 214,700 NHS Norfolk 765,100 Richard Haywood NHS Suffolk (East)* 301,000 Total 1,280,800 Source: ONS mid 2010 population estimates * Total Suffolk population is 602,000 which has been halved to reflect approximate pathways A full description of the service provided by each clinic can be found within their respective operational policies. 6 Soft Tissue Sarcomas (Site Specific) Within the final Sarcoma Measures it has been recognised that site specific soft tissue sarcomas may be managed by a designated site specific MDT. Any local management must however be in accordance with shared care pathways. It is the responsibility of the Sarcoma Advisory Groups (SAGs) to develop those pathways and designate the MDTs outside of the centres that may manage site specific soft tissue sarcomas. At the time of writing the Birmingham SAG have not yet developed their shared care pathways and this forms part of their work programme for The London SAG have developed the following shared care pathways, which are due to be published on their website in November 2011: LSESN Shared Care Pathway: Breast sarcomas LSESN Shared Care Pathway: Gastrointestinal stromal sarcomas LSESN Shared Care Pathway: Gynaecological sarcomas LSESN Shared Care Pathway: Head and Neck sarcomas LSESN Shared Care Pathway: Lung/chest wall sarcomas including pulmonary metastatectomy LSESN Shared Care Pathway: Skin LSESN Shared Care Pathway: Urology The London pathways have been reviewed by the site specific teams locally and two have been agreed (the breast pathway and the head and neck pathway). The Network is leading discussions with regard to the remaining five pathways which have not been agreed by Anglia at this stage. Page 6 of 14

7 The Network is very keen to demonstrate compliance with site-specific pathways with both SAGs and this will be a key focus going in to It should be noted that in the interim all site-specific sarcoma patients are being managed by MDTs which are IOG compliant (for their respective site specific IOGs) and identified as a specialist centre for that tumour type in line with the Network site specific pathways. Please see section 10 for further information relating to the SAGs. 7 Paediatric Sarcomas This document relates to the management of bone and soft tissue sarcomas in adults (aged 16+). Sarcomas in children (aged 0-16) are managed by the Paediatric Oncology team at CUHFT who access bone sarcoma surgical services at ROH in Birmingham and RHOH in London. This is confirmed in the Network Paediatric pathway which can be accessed on the Anglia Cancer Network website: 8 Designated Chemotherapy Services (1A-105l) The following Trusts and clinicians are named as designated to provide chemotherapy to Soft Tissue and Bone Sarcoma patients, in line with the Network agreed pathways detailed in Appendix 1: Table (vii) Trust Clinicians Authorised to deliver chemotherapy regimens for: Bone sarcoma Soft tissue sarcoma CUHFT Helena Earl Helen Hatcher Yes Yes IHT Jamie Morgan Yes Yes NNUHFT Helen Stubbings Yes Yes All of the above clinicians are named as extended sarcoma MDT members for the MDTs they are linked to. 8.1 Designated Radiotherapy Services (1A-106l) The following Trusts and clinicians are named as designated to provide radical, including adjuvant, radiotherapy to Soft Tissue and Bone Sarcoma patients, in line with the Network agreed pathways detailed in Appendix 1: Table (viii) Trust Clinicians Authorised to deliver radiotherapy courses for: Bone sarcoma Soft tissue sarcoma CUHFT Gail Horan Yes Yes IHT Jamie Morgan Yes Yes NNUHFT Helen Stubbings Yes Yes All of the above clinicians are named as extended sarcoma MDT members for the MDTs they are linked to. 9 Designated Pathology Services (1A-107l) In line with IOG and Peer Review requirements all sarcoma biopsied must be reported by, or receive a second opinion from, a Sarcoma Specialist Pathologist (SSP). There should also be named laboratories for cytogenetic and molecular biology investigations on sarcoma cases. Within Anglia the SSPs and named laboratories are as follows: Page 7 of 14

8 Table (ix) Named laboratory for cytogenetics/molecular biology NNUHFT Royal Marsden, London ROH, Birmingham Named SSPs Tim Barker Cyril Fisher Dr V P Sumathi Prof L Gunner Dr D C Mangham Dr F Puls 10 The Sarcoma Advisory Groups As Anglia has pathways which look to both Birmingham and London, the region feeds into two different Sarcoma Advisory Groups (SAGs). In Birmingham the supra regional NSSG for sarcoma was established in The existence of this group predates publication of the peer review measures. The group which has now been rebranded as the West Midlands SAG and is currently chaired by Dr David Peake. London have recently established the London and South East SAG and this is chaired jointly by Dr Jeremy Whelan from UCLH and Dr Andrew Hayes from The Royal Marsden. The West Midlands SAG and the London and South East SAG are seen as the only SAG for the tumour groups and regions they represent and delegated corporate responsibility for co-ordination and consistency across networks on cancer policy, patient pathways, practice guidelines, audit, research and service improvement as this relates to bone and soft tissue sarcomas. Page 8 of 14

9 11 Appendix 1 Page 9 of 14

10 Page 10 of 14

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12 12 Evidence of Agreement This document has been agreed by: The Chair of the Anglia Cancer Network Board (1A-103l, 104l) Name: Paul Watson Organisation: Suffolk PCT Date agreed: 29 November 2011 The Chair of the Pan Birmingham Cancer Network Board (1A-105l, 106l) Name: Dr Doug Wulff (Acting Chair) Organisation: NHS Birmingham East and North Date agreed: 25 November 2011 The Chair of the North London Cancer Network Board (1A-105l, 106l) Name: Jeremy Whelan Organisation: UCLH Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The East of England Specialised Commissioning Group (1A-103l, 104l) Name: Pam Evans Organisation: EoE SCG Date agreed: 4 November 2011 The London Specialised Commissioning Group (1A-103l, 104l) Name: Ursula Peaple Organisation: London SCG Date agreed: 25 November 2011 * Please note, agreement is only to the two measures specified, UP has not agreed the document as a whole at this stage (please see evidence folder for letter) The West Midlands Specialised Commissioning Group (1A-103l) Name: Gail Fortes Meyer Organisation: WM SCG Date agreed: 10 November 2011 The National Specialised Commissioning Group (1A-103l) Name: Teresa Moss Organisation: NSCG Date agreed: 25 November 2011 The Chair of the Pan Birmingham Cancer Network Chemotherapy Group (1A-105l) Name: Dr Frances Shaw Organisation: Heart of England NHS Trust Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The Chair of the North London Cancer Network Chemotherapy Group (1A-105l) Name: Ms Kate De Lord & Ms Wendy King Organisation: North London Cancer Network Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The Chair of the Pan Birmingham Cancer Network Radiotherapy Group (1A-106l) Name: Dr Shan Chetiywardana Organisation: University Hospitals Birmingham NHS Foundation Trust Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The Chair of the North London Cancer Network Radiotherapy Group (1A-106l) Name: Ms Sian Davies Organisation: Princess Alexandra Hospital Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The Chair of the West Midlands Sarcoma Advisory Group (1A-105l, 106l) Name: Charles Candish Organisation: Gloucestershire Hospitals NHS Foundation Trust Date agreed: 13 November 2011 Page 12 of 14

13 The Chairs of the London and South East Sarcoma Advisory Group (1A-105l, 106l) Name: Jeremy Whelan Organisation: UCLH Date agreed: NOT APPROVED (please refer to note at the bottom of this table) Name: Andrew Hayes Organisation: RMH Date agreed: NOT APPROVED (please refer to note at the bottom of this table) The Chair of the Sarcoma NSSG (1C-102d) Name: Helena Earl Organisation: Cambridge University Hospitals NHS Foundation Trust (CUHFT) Date agreed: 6 November 2011 The Sarcoma NSSG Members (1C-102d) This document was circulated to all SSG members by on the 3 October 2011 and was agreed on the 4 November Minor updates were agreed by the Chair and Sarcoma NSSG at their meeting on 20 April The AngCN Board (1C-102d) The AngCN Executive Group, under delegated authority from the Network Board (see Board Minute Item 15, 1 February 2012) for minor document changes, reviewed and approved this document on 9 May A note relating to the partial approval of this document Please note several of the individuals representing organisations as named above have not approved this document at this time. It is recognised that within Anglia there are currently gaps to compliance with the sarcoma measures, particularly around the agreement of shared care pathways with the centres (as detailed in section 6 of this document). This is being openly and actively discussed with the two SAGs and it forms part of both of the SAG work programmes to prioritise this issue over the next 12 months. Anglia Cancer Network are committed to engaging with the centres to ensure that compliant pathways are put in place. At the time of update this is still a work in progress. For this reason Anglia have accepted that several individuals (representing their respective areas) felt they were not able to sign up to this document at this stage, and this is reflected in the above table. Document management Document history Review period: 2 years or earlier in light of new evidence Date placed on electronic library: Authors: Sarcoma NSSG Document Owner: Anglia Cancer Network Tel: Version number as approved and published: 2 Unique identifier no.: AngCN-SSG-Sa9 Monitoring the effectiveness of the Process a) Process for Monitoring compliance and Effectiveness - Review of compliance as determined by audit. Any non compliance to be presented by PQ Manager to the AngCN Business Meeting on an annual basis the minutes of this meeting are retained for a minimum of five years. b) Standards/Key Performance Indicators This process forms part of a quality system working to, but not accredited to, International Standard BS EN ISO 9001:2008. The effectiveness of the process will be monitored in accordance with the methods given in the quality manual, AngCN-QM. Equality and Diversity Statement This document complies with the Suffolk PCT Equality and Diversity statement an EqIA assessment is available on request to Anglia Cancer Network PQ Manager, Gibson Centre, Exning Road, Newmarket, CB8 7JG. Page 13 of 14

14 Disclaimer It is your responsibility to check against the electronic library that this printed out copy is the most recent issue of this document. Page 14 of 14