INTERNAL VALIDATION REPORT...

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1 INTERNAL VALIDATION REPORT... Network Trust Team AngCN CAMBRIDGE UNIVERSITY HOSPITALS Addenbrookes Sarcoma Locality Measures (11-1D-1l) /12 Date Self Assessment Completed 30th November 2011 Date of IV Review 21st December 2011 Lead Clinician Helena Earl Compliance SARCOMA LOCALITY MEASURES Key Themes Structure and function of the service Self Assessment 33.3% (4/12) Internal Validation 33.3% (4/12) Leadership and Membership Dr Helena Earl leads the locality specific sarcoma service at Addenbrookes Hospital and is also Sarcoma SSG lead for the Anglia Cancer Network. The core personnel of the Sarcoma MDT at Addenbrookes consists of 4 non-surgical consultants Dr Helena Earl (Lead Clinician, Medical Oncologist and Sarcoma Specialist), Dr Helen Hatcher (Lead for Teenage and Young Adult Cancers, Medical Oncologist and Sarcoma Specialist), Dr Gail Horan (Clinical Oncologist and Lead for Radiation Oncology in Sarcoma) and Dr Ramesh Bulusu (Clinical Oncologist and specialist in GIST). In addition the MDT includes 2 radiologists specialist in musculo-skeletal radiology and sarcomas (Dr Philip Bearcroft and Dr Melanie Hopper). The MDT also includes a Sarcoma Clinical Nurse Specialist (Dochka Davidson) who also has experience as a research nurse in early phase trials, a Research Nurse (Sue Bailey) who is also the nursing lead for the Cambridge Cancer Trials Centre at Addenbrookes, a clinic administrator (Karen Leitch), and an MDT co-ordinator (Kim Royle). Two clinic based healthcare assistants are also part of the team. Eileen Andrews provides expert and dedicated secretarial support for the sarcoma team. For palliative and supportive care for sarcomas we have close links with the Palliative Care team at Addenbrookes, and also with the Palliative care teams throughout West Anglia, in Hospices and Community Macmillan teams. Meeting / Clinic Arrangements and Operational Policies The complex management pathways for patients diagnosed with sarcomas are well co-ordinated by this highly functional team. A sarcoma clinic runs once a week on a Thursday morning, and new patients, patients on chemotherapy and follow-up attend the clinic. 51/52 sarcoma clinics were open in Patients requiring complex in patient chemotherapy are seen in clinic and admissions arranged. Each of the four consultants attends at least 42 clinics per year, and inpatient care is also co-ordinated by the team with ward rounds 3 x per week on the oncology ward (D9). There is a weekly MDT, at 1.30pm on Thursdays after the major clinic of the week. All new patients are discussed, and patients are reviewed at critical points in their care pathways. In addition sarcoma patients are discussed in the site specific MDTs and all the personnel involved locally are listed in the accompanying document (CUHFT Operational policy). The sarcoma clinic on Thursday morning starts with an MDT for discussion of all patients being seen in clinic that day. This provides both a consensus for patient management and education for the whole sarcoma team. In addition a Diagnostic Clinic on a two- week wait cancer pathway has been running for 12 months. Dr Helena Earl and Dr INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 1/6

2 Helen Hatcher run the diagnostic clinic within the Oncology Centre on a Friday afternoon, to see patients referred on this pathway. The criteria for rapid access referral are detailed in an appendix to the Operational Policy document. 36 diagnostic clinics were run in Workload New patient seen by the sarcoma service - January 1st 2010 to December 31st 2010: 100 new patients. 7 patients had aggressive Malignant Mixed Mullerian tumours (MMMT) of the gynaecological tract with a predominant sarcoma component. 3 patients were referred to the sarcoma service but biopsy showed a haematological malignancy (diffuse large B-cell lymphoma). New patient seen by the sarcoma service - January 1st 2011 to August 9th 2011: 78 new patients. 5 patients had aggressive Malignant Mixed Mullerian tumours (MMMT) of the gynaecological tract with a predominant sarcoma component. 1 patient was referred to the sarcoma service but biopsy showed a haematological malignancy (Hodgkins Disease) and a further 1 patient had a squamous carcinoma of the pelvic side wall. There is an increase in patient numbers from just under 100/year (2010) to 132 (predicted)/year (2011). The combination of centralisation of sarcoma services and the diagnostic clinic probably accounts for this rise in patient numbers. New patients seen in the rapid access diagnostic clinic from January 5th 2011 to December 23rd 2011: 86 new patients, 22 patients were diagnosed with sarcoma, 25% rate, 1 in 4 patients seen. This is a high rate for a diagnostic clinic. Referral rates are increasing, and other longer established diagnostic clinics in the UK have ratios of benign to sarcoma of between 1 in 10 and 1 in 20. We are encouraging more referrals from primary care, and we should be aiming for a sarcoma : benign ratio of approximately 1 in 10, to ensure that we are identifying sarcomas as early as possible. Coordination of care/patient pathways Coordination and Patient Centred Pathways of Care Patient pathways are detailed in the operational policy and are increasingly functional, improving over the past year. These pathways are complex with patient referral to other site specific MDTs at Addenbrookes and Papworth, and complex referral pathways to ROH Birmingham. These pathways are now well-embedded and managed efficiently by the highly functional sarcoma team. Dochka Davidson has a dedicated phone line for efficient patient communication. All patients with primary bone sarcomas and limb and limb girdle soft tissue sarcomas are biopsied, diagnosed and surgically managed by the Supra-Regional Sarcoma Service at Royal Orthopaedic Hospital in Birmingham. Five specialist sarcoma surgeons in Birmingham (lead Mr Rob Grimer) see and biopsy new patients in their clinic on Tuesday afternoons. Expert specialist sarcoma pathology is available on site in Birmingham, and on confirmation of diagnosis, the complex management plan is formulated for each patient on an individual basis. All surgery in this category is carried out at ROH Birmingham. All chemotherapy (inpatient and outpatient) is delivered at Addenbrookes, and all radiotherapy whether pre- or post-operative is delivered at Addenbrookes. Site specific sarcomas are surgically managed within the site specific MDTs in the locality and all pathways and personnel are detailed in the operational policy. For example gynaecological sarcomas have surgery at Addenbrookes by the specialist gynaecology / oncology team, and intra-thoracic and chest wall sarcomas including pulmonary metastatectomy are surgically managed at Papworth. Addenbrookes is the sarcoma diagnostic centre for the 'west' Anglia Cancer Network and all patients with sarcoma presenting to QEH Kings Lynn, Peterborough, Bedford, Hinchingbroke, Papworth, and West Suffolk and local Cambridge patients are referred to Addenbrookes for management and follow-up. All sarcoma patients are now managed at Addenbrookes, including initial management, chemotherapy and radiotherapy, follow-up, management of relapse (chemotherapy and radiotherapy) and symptomatic and end-of-life care. The clinic is a joint clinic with all 4 consultants attending. The team works closely with the TYA MDT for the management of the TYA patients with sarcomas. Additional services for this age group with sarcomas are detailed in the TYA peer-review documents. As a new service we have been very careful to consider the 'patient-centredness' of our care pathways in all the recent developments. The team meets informally on most days to discuss individual patient management. The complexities and multiple different pathways makes this essential. The patients have easy access to communicate with the team via the dedicated direct phone link to Dochka Davidson. Communication We pride ourselves on excellent communication between all members of the extended team, and our various partners in the local site specific MDTs and the Supra-Regional MDT in Birmingham. We are developing video links with ROH Birmingham so that in the future we can contribute to their Tuesday morning MDT when our patients are discussed. At present we maintain good communications with Birmingham since they have an excellent secretarial / administrative set-up, which allows us to phone direct if necessary. There is direct consultant to consultant link via mobile phones for any urgent matters. We will receive INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 2/6

3 immediate debriefing on the phone from consultants in Birmingham after their Tuesday MDT. Guidelines We have patient management guidelines which are mostly adopted from National Guidelines for the Treatment of Sarcomas. The 4 sarcoma consultants attend the annual British Sarcoma Group Meetings, where there has been a National approach to treatment guidelines for Sarcomas. We follow these guidelines for diagnostic, surgical management, adjuvant chemotherapy, (neo)-adjuvant radiotherapy, and chemotherapy and radiotherapy for relapsed patients. We are part of the local thoracic MDT for consideration of pulmonary metastatectomy in our patients. All our outpatient chemotherapy regimens are on the e-prescribing system ARIA, and are the nationally accepted protocols. We are in dialogue with the Systemic Anti-Cancer Therapies (SACT) with regard to all established chemotherapy protocols. Prior to NICE approval, we have in the past been successful in obtaining new drugs for our patients via exceptional funding applications. We will now be placing new licensed drugs on the list available from the Cancer Drug Fund prior to NICE approval. To give an example we have successfully introduced Trabectidin a novel and effective anticancer drug into the treatment of sarcomas at Addenbrookes. Prior to NICE approval this came via exceptional funding applications, and now the drug is approved for use in the NHS. Our network is one of the highest users of this effective drug in the country, and we recently presented our experiences at the Connective Tissue Oncology Society (CTOS) a US based organisation, in Chicago which was well received. Our GIST team is one of the best in the country. Dr Ramesh Bulusu is recognised as a National leader, and has frequently presented our work at the American Society of Clinical Oncology in the US. Mr Richard Hardwick is one of the few upper GI surgeons in the country with particular expertise in the surgical management of GIST patients. Patient experience We believe that that the sarcoma service at Addenbrookes offers patients with suspected and confirmed sarcomas an excellent service. Informally we receive many expressions of thanks. There are regular patient experience surveys covering chemotherapy and radiotherapy patients, which will clearly cover some sarcoma patients. These services have received favourable feedback in terms of patient experience. Since the Sarcoma diagnostic service is a developing service we have not as yet formally assessed patient experience for Sarcoma specifically, but intend to do so in the coming years. The Trust has a comments/complaints card process available in all clinic areas. Clinical outcomes/indicators (where applicable) There are currently no nationally defined clinical outcomes/indicators for Sarcoma services. Good Practice Good Practice/Significant Achievements Locality Team Achievements The established sarcoma team works in an efficient, 'joined-up' way to provide a seamless care-pathway / journey for our patients. It is a significant achievement that the sarcoma service has been established and fully embedded over the past 2 INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 3/6

4 years. We follow all National guidance for treatment of our patients and from a standing start over the past 3 years this is an achievement. We look forward to developing and improving our service in the coming years, and taking part in research and adopting new protocols and treatments for the benefit of our patients. We are an expert consultant group with many years of experience between us. Dr Earl previously worked with Professor Souhami at the London Sarcoma Service (6 years), and subsequently worked as a consultant in Birmingham including the ROH for 5 years, before being appointed consultant at Addenbrookes 15 years ago. She has maintained her interest in sarcomas throughout this time. Dr Hatcher trained at Addenbrookes, but also at the Royal Marsden Hospital with Professor Ian Judson specialising in sarcoma and early phase clinical trials. Dr Bulusu has developed an excellent region wide service for GISTs and is a recognised national leader. Network Achievements The Anglia Cancer Network is undertaking an options appraisal to establish the feasibility of providing a Soft Tissue Sarcoma Centre within the network (covering a population of 2.75 million). The options appraisal has the support of the East of England SCG and Anglia Cancer Network Board (and Commissioners). National Achievements Dr Helen Hatcher is recognised as a national leader for Teenagers and Young Adults with cancer, many of whom have sarcomas. She is also a member of the NCRI Sarcoma subgroup, national recognition of her standing in the sarcoma specialist community in the UK. Drs Hatcher, Earl, Horan and Bulusu are all members of the British Sarcoma Group and take an active part in guideline and protocol developments for the management of sarcoma patients in the UK. International Achievements Dr Hatcher and Dr Earl are part of an International Collaboration between National Cancer institute (US), EORTC, and Cancer Research UK / NCRI for Rare Cancers. Dr Hatcher has led for the UK on gynaecological sarcomas. 3 protocols are in preparation. Concerns Immediate Risks Serious Concerns Concerns The team has concerns about the future in terms of workload and sustainability linked to manpower requirements. As INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 4/6

5 centralisation of all sarcoma services in Anglia 'West' are achieved, and the Diagnostic Clinic continues with increasing referral from primary care, the service will require additional sessional provision at consultant, and specialist nursing levels in order for these recent developments to be sustainable. The treatment of sarcomas involves highly complex treatment algorithms and very challenging communication issues. The prognosis of many of our patients is poor and providing adequate consultation time for patients is important. The result is that the care of patients with sarcomas has its challenges and is stressful for the Sarcoma team. This presents its own challenges for sustainability, which can only be solved by increasing the number of consultants and nurse specialists. The Trust and Anglia Cancer Network need to ensure that the West Midlands Sarcoma Advisory Group is functioning appropriatelay and has a work programme to agree shared care pathways across the Region. As the West Midlnad SAG has not agreed or evidence the pathways with CUHFT in their documentation a number of measures are now non compliant. General Comments Sarcoma services at Addenbrookes have developed significantly in the past 2 years, into a highly efficient dedicated and co-ordinated service. This has been possible by the development of a hard-working and dedicated team, the members of which work very well together. The only concerns are for the continued development of this service over the next 2-5 years. The Diagnostic clinic runs at present in Oncology, because this was the most expedient when it was set up in January The clinic runs very efficiently and in particular the referral of appropriate patients to ROH Birmingham occurs in a joined-up and timely way. However this was not envisaged to be a long term solution. Although probably sustainable during 2012, we need to make plans either for this to switch to a surgically based clinic, or to provide more consultant sessions within oncology The Trust to ensure that the diagnostic service has an appropriate level of surgical input to the Sarcoma MDT and dedicated sarcoma clinics. CUHFT has evidence of internal pathways for all measures that meet with the compliance standard so these had been marked as compliant, however due to to West Midlands SAG not having compliant documentation regarding our linked pathways we cannot now judge ourselves to be compliant.the measures compliance has been changed accordingly Summary of validation process Self assessment by the MDT Clinical Lead (Dr. Helena Earl) Desktop review of Operational Policy and Network Guidelines by IV panel Panel Members : Prof. Tim Eisen (Chair) Helen Balsdon (Trust Lead Cancer Nurse) Chris Youngman, Commisisoner, NHS Cambridgeshire Elizabeth Hunt, Associate Director of Operations (Cancer) Denise Gale, Interim Operations Manager - Cancer Division INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 5/6

6 Completion of IV compliance matrix and IV documentation on CQuiNS Organisational Statement I, Prof. Tim Eisen (Validation Chair) on behalf of CAMBRIDGE UNIVERSITY HOSPITALS agree this is an honest and accurate assessment of the Sarcoma Locality Measures. Agreed by Karen Castille, Acting CEO (Chief Executive) on 29th Dec INTERNAL VALIDATION REPORT for Addenbrookes - Sarcoma Locality Measures (published: 27th January 2012) Page: 6/6