West of Scotland Cancer Network. Cancer in Scotland: Monitoring Report April 2008 March 2009

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1 West of Scotland Cancer Network Cancer in Scotland: Monitoring Report April 2008 March 2009 Page 0

2 Contents Page No. 1. Introduction 2 2. Regional Cancer Advisory Group (RCAG) 2 3. Managed Clinical Networks (MCNs) 3.1 Lung 3.2 Colorectal 3.3 Gynaecological 3.4 Breast 3.5 Urology 3.6 Head and Neck 3.7 Haemato-oncology 3.8 Skin 3.9 Upper Gastrointestinal (GI) 3.10 Palliative Care 3.11 National - Scottish HepatoPancreatoBiliary Network 3.12 National - Scottish Sarcoma Network 3.13 National - Scottish Adult Neurological Oncology Network West of Scotland Pharmacy Network West of Scotland Cancer Nurses Group Regional Cancer CPD Group West of Scotland Primary Care Network Scottish Cancer Research Network (SCRN) Patient Partnership Forum Scottish Cancer Surveillance Unit West of Scotland Boards & Cancer Centre 11.1 NHS Ayrshire and Arran 11.2 NHS Forth Valley 11.3 NHS Greater Glasgow & Clyde, including Beatson West of Scotland Cancer Centre 11.4 NHS Lanarkshire Summary 48 Appendix 1: West of Scotland Cancer Network 2008/2009 Year End Position 48 Appendix 2: West of Scotland Cancer Network 2009/2010 Work Plan 48 Page 1

3 West of Scotland Cancer Network (WoSCAN) Year End Monitoring Report 1. Introduction This annual report for the year 2008/09 again highlights continued improvements in the accessibility and quality of cancer services in the West of Scotland. Collaborative working at national, regional and local level, between different groups of healthcare professionals, different Boards and between patients and healthcare professionals has contributed to these achievements. As stated in previous reports, the complexity of cancer care and its interdependency with other services and agencies continues to make planning cancer services on a regional basis particularly challenging. Better Cancer Care was launched on the 27 th October 2008 and sets out an ambitious national plan to support all those in Scotland who find themselves living with and beyond cancer. 5 main work streams for the coming year have been identified nationally: Living with Cancer, Quality, ehealth, Chemotherapy, and Radiotherapy. These will inform the RCAG work programme for the coming year, 2. Regional Cancer Advisory Group (RCAG) Chair Robert Calderwood, Chief Executive NHS Greater Glasgow & Clyde Lead Cancer Clinician Dr Robert Masterton, Medical Director, NHS Ayrshire and Arran Regional Coordinator Evelyn Thomson, West of Scotland Cancer Network (WoSCAN) Regional Cancer Advisory Group (RCAG) The RCAGs 08/09 work plan details the extensive programme of work in relation to regional cancer services that has been taken forward (Appendix 1). The section that follows highlights key pieces of work that have been or are currently being progressed. Cancer Waiting Times Sustaining delivery of the cancer waiting time targets across the region continues to prove challenging. Overall performance for West of Scotland Boards is % as at 24 th April New access targets set out within Better Cancer Care that are to be delivered by 2011 are now being introduced and a concerted effort will be required to deliver these. 62-day urgent referral to treatment target to include screened positive patients and all patients referred urgently with a suspicion of cancer. 31-day target for all patients diagnosed with cancer from decision to treat to first treatment. Significant work has been undertaken regionally and locally to identify and address bottlenecks and to undertake preparatory work that will support the introduction of the new cancer targets. Managed Clinical Networks (MCNs) are reviewing and revising ideal patient pathways to ensure that they reflect current practice; inter Board transfer policies are being revisited; Boards are further enhancing referral management processes; and nationally work is ongoing around data, definitions and reporting. Work is also being undertaken around capacity, redesign and workforce all of which are critical to delivery of the new targets and service improvement. Screening Bowel Cancer Screening This has been successfully introduced in Forth Valley and Ayrshire and Arran. Implementation within Greater Glasgow & Clyde (GG&C) has commenced and planning for roll out in Lanarkshire is well advanced with implementation planned for late Introduction of 2-view mammography Planning is well underway. New staff appointments made within the screening service in GG&C means that 2-view will be introduced in a phased way during 09/10. 2-view will commence in the Irvine screening centre in April The impact of this will be monitored over the coming years. Specialist Oncology Services Radiotherapy Professor Roger has represented the West of Scotland Cancer Network on the Scottish Radiotherapy Advisory Group (SRAG) that is progressing work in relation to radiotherapy modelling, workforce and new technology, and will continue to chair SRAG following his retirement. While modelling has been hampered due to incomplete data nationally the information currently available does not highlight any Page 2

4 major changes of practice for radiotherapy. As the volume of patients undergoing radiotherapy continues to increase consideration will require to be given to the need for additional capacity and, if required, where this is best provided. SRAG are currently assessing the introduction of In Vivo Dosimetry, which is being piloted in NHS Lothian. WoSCAN representation on SRAG has been reviewed to ensure continued and appropriate input to the work of this Group. Chemotherapy Implementation of recommendations arising from the strategic review of chemotherapy continues. Boards are reviewing capacity and demand modelling, compliance with HDL (2005) 29, and further developing local service provision. Contracts have now been signed that enable the implementation of a regional chemotherapy prescribing and administration system. Work has commenced to implement the hub at the cancer centre prior to regional implementation of a fully networked system over the coming months. Managed entry of new drugs continues to be supported by the Regional Prescribing Advisory Group. Guidance issued to Area Drugs & Therapeutics Committees has been accepted and implemented. Work is ongoing around the development of comprehensive Clinical Management Guidelines for all tumour types in conjunction with regional/national MCNs. Regionally we have responded to the Public Petitions Committee on access to cancer medicines and have reviewed regional processes. Implementation of FRMC Recommendations for Specialist Oncology Services A programme of work has been initiated to review the current position with implementation and to determine future requirements. This has been split into a number of phases: Phase 1 Gap analysis; Phase 2 Review of strategy; Phase 3 Multidisciplinary Team (MDT) meetings; Phase 4 Follow-up; Phase 5 Radiotherapy. Phase 1 has recently been completed and will be reported to the Regional Planning Group (RPG) in March Funding for an additional 3 Oncologists has been secured, which will enable completion of the implementation of the regional strategy during 09/10. Diagnostics West of Scotland PET/CT Service The service is fully operational and being managed as part of a national collaborative with other centres. A fixed scanner in Lothian will be in place by autumn 2009 along with a scanner in Tayside. A number of national protocols have been agreed with others in development scans per week are currently being undertaken in Glasgow with projected required throughput expected to significantly increase within the next 5 years. The business case for a 2 nd scanner in the West of Scotland is now in its final draft. Patient satisfaction with current service provision is high with current waiting times 7-14 days. Work continues to take forward the development of an on site state of the art cyclotron and radiochemistry facility with on site FDG production anticipated by quarter Endoscopic Ultrasound (EUS) Work is underway to determine regional service model for upper GI EUS. Endobronchial Ultrasound (EBUS) Regional service model agreed. Local service provision being established. Sentinel Node Biopsy Roll out of sentinel node biopsy in the management of breast cancer across the region continues to be supported. Surgical Service Provision Ovarian Cancer Regional service model agreed and proposal with RPG for consideration of funding 09/10. This will see surgical services provided in one main centre within GG&C. Head and Neck Cancer Regional service model for the provision of micro vascular surgery being progressed as part of the remit of the West of Scotland Oral Maxillo Facial Group. Page 3

5 Penile Cancer Services Early work is underway to review current service provision and determine need for service redesign and formalisation of a regional service model. Cancer MCNs A wide range of developments has been initiated via regional and national MCNs during 08/09. The main focus of these developments has been on improving access, quality and delivery of cancer care across the region. A range of regional policies and protocols have been developed and are being implemented. Performance against national standards has been reviewed and reported. MDTs are being reviewed against NHS Quality Improvement Scotland standards and are being developed and strengthened. A range of educational meetings have also been held that have contributed to continuing professional development while strengthening clinical networking. During 09/10 MCNs will play a key role in leading the development of national standards for other tumour types. This work will be taken forward by a national group chaired by Dr. Bob Masterton. A formal appointment process for new MCN Clinical Leads has been introduced in and a number of new Network Leads have been appointed. Each Network has a clear workplan in place that has been agreed with the RCAG. Recognising current and future needs, a comprehensive development programme is being taken forward with Clinical Leads and Network staff. Patient Experience and Involvement The RCAG has agreed a programme of work relating to chemotherapy and colorectal screening. Staff have been appointed to lead this work, which will commence in 09/10. The Regional Partnership Forum continues to meet and actively contribute to the RCAG programme of work. It is however recognised that this requires to be strengthened in the coming year. The Network are actively contributing to work being taken forward nationally in relation to Living with Cancer and are working in partnership with voluntary sector organisations. Regional Prioritisation RCAG undertook to agree and prioritise service pressures, some of which were supported by the RPG for funding in 08/09. Among other things this has secured future provision of the Minimal Residual Disease service provided at Yorkhill Hospital. Priorities for 09/10 have been agreed and include, establishing a regional service for the management of ovarian cancer, 3 additional oncologists and introduction of breast MRI for women with high familial risk of breast cancer. Cancer ehealth RCAG is currently taking forward a substantive ehealth programme of work in conjunction with ehealth leads from across the region. This includes: CEPAS to support electronic prescribing of chemotherapy, cport to support capacity and demand modelling for chemotherapy, ecase to support cancer audit, cancer waits, MDT system to support the management of multidisciplinary team (MDT) meetings, ereferral. A business analyst is in the process of being appointed to lead this work, ensuring full integration with other ehealth development. Clinical Audit The MCN has established standard operating procedures for receiving, collating and analysing data from health boards in the West of Scotland. Data is downloaded to the MCN based on a download schedule (ratified by clinical leads) and the reporting of data is according to this schedule. The data for all tumour sites could not be analysed due to staffing issues at the network office. The data were analysed and reported against the NHS QIS standards for tumour sites that had NHS QIS standards and for the other tumour sites they were reported against agreed measurement criteria. Work is underway to develop clinical management standards for tumour sites with no NHS QIS standards. Analysis of clinical audit data has highlighted many issues which are outlined below: 1) Waiting times submissions take precedence over submission of clinical audit data to the MCN and caused a delay in the analyses and sign off of data 2) Some health boards were unable to submit data to the MCN due to lack of staff Page 4

6 3) Quality of oncology data was poor 4) Data completeness still an issue with some health boards Priorities for 09/10 1) Reporting of clinical audit data for all tumour groups except neuro-oncology and sarcoma 2) Survival analysis for ovarian cancer 3) Development of clinical management standards for Urology 4) Review of regional clinical audit datasets 5) Upload of historical data onto e-case Malignant Spinal Cord Compression (MSCC) Since regional guidelines were published in 2007, local MSCC groups have been set up in West of Scotland Boards to assist with implementation. An example of this is the GG&C MSCC group which has developed and agreed algorithms for 1) the process for potential admission from primary care, 2) the process for admission to the Beatson West of Scotland Cancer Centre and 3) the process for contacting acute receiving teams in Glasgow and Clyde, for patients with suspected MSCC. Another outcome from the group was the initiation of a Saturday morning MRI service for patients with suspected MSCC (to meet the guidelines in terms of time from referral to diagnosis). There has also been a focus on training and raising awareness of the guidelines with all professional groups across Glasgow & Clyde. Regional MSCC Group: Involvement from MSCC leads in Ayrshire and Arran, Forth Valley, Lanarkshire and Greater Glasgow & Clyde with the main aim of sharing practice and collaborating to promote consistency of practice across Boards. Work includes: Mapping of West of Scotland Cancer Network guidelines with recently published MSCC guidelines from the National Institute of Clinical Excellence. Macmillan Funded MSCC Audit Facilitator (Stephanie Garrett) in post for 2 years to assist with training and to undertake regional audit. Core dataset now available (Scotland wide) following collaboration with ISD. Work ongoing to develop database for electronic data entry. Patient information - contact card being developed for patients at high risk of developing MSCC alerting them to potential symptoms. Proposal under development for MSCC research on patient information. Close links with leads in the South East Scotland and North of Scotland Cancer Networks via Scottish MSCC group which is currently focussing on education (developing web-based educational resource for staff) and audit. 3. Regional and National Managed Clinical Networks (MCNs) 3.1 Lung Lead Clinician Network Manager Dr Richard Jones Shirley Anne Savage (new manager in process of being appointed) There have been a number of developments over the last year in the Lung Cancer MCN. In 2008 the New Lead Clinician Richard Jones and Network Manager Shirley-Anne Savage started visiting each of the Lung Cancer MDTs in order to review and share good practice within the MCN. These visits will continue in Clinical Management Guidelines are now in place for both Small Cell Lung Cancer and Non Small Cell Lung Cancer. An imaging sub-group was established to develop new guidelines to include the use of PET/CT and EBUS in the diagnosis and staging of lung cancer. These will be finalised in The patient information booklets were reviewed in 2008 and will be printed for distribution to all lung cancer patients early this year. Lung cancer audit data for patients diagnosed in 2006 and 2007 were submitted and analysed in Two educational days were held one in March to discuss 2006 lung cancer data and one in November to discuss 2007 data. A national meeting was also held in April where the 3 regional Page 5

7 networks presented their 2006 data. Data from 2007 was also submitted to LUCADA (England and Wales Audit Data) for publication in their report. Priorities for 09/10 Development of imaging guidelines (including PET/CT and EBUS) Mapping of current EBUS services and provide an MCN view on current service provision Establishment of uniform pathology reporting across the network Distribution of new patient information booklets Progress work with the patient partnership forum Analysis and reporting of 2008 clinical audit data Participate in reporting of data to LUCADA Complete the review of lung cancer MDTs Facilitate regional and national educational events 3.2 Colorectal Lead Clinician Network Manager Mr R Diament/Dr R. Molloy Kevin Campbell Having gained an understanding of colorectal cancer service activity over time, from assessment of clinical audit data, describing where, when and how care is provided to what numbers of patients across the region, the MCN is now able to focus on quality and service improvement. The MCN organised a national colorectal cancer event in May 2008, bringing together colleagues from all three regional networks. The programme for this event addressed contemporaneous issues in staff training and accreditation, service performance and outcomes. This was the third such collaborative national event and enthusiasm to continue service development discussion at a national level means the next event is planned for 29 May This will provide a forum for the first national comparative assessment of service performance using the NHS-QIS Standards (2008). The Colorectal MCN has been engaged in a continuous quality improvement process in regard to MDT review practice. This programme of work was initiated by an audit of MDT configuration, process and outcome across the region in 2007, which identified a number of areas of potential improvement. A proposal for a virtual MDT from the MCN to participate in the training programme provided to all MDTs in England and Wales attracted funding from Macmillan Cancer Support and the team attended the Pelican Foundation in Basingstoke in April 08. Using the experience of the Pelican training, a case scenarios event is being planned for early summer 09 which intends to test and challenge patient management by asking West of Scotland MDTs to determine treatment plans for patients with specific clinical features at presentation. It is hoped that the planned format for this event can be developed for successive events for our Network and potentially for other disease group MCNs. Our follow-up audit of MDT practice in 2008 extended the audit nationally and identified that although improvements had been made a number of areas requiring development remain. Critical examination of the component requirements of a successful MDT review identified a number of additional development opportunities. One such element is the radiological imaging required to accurately stage the disease evidence indicated some regional differences in technique and considerable variation in the quality of the imaging and of the reports. To address this a protocol for MRI has been developed, which used in conjunction with a new standardised report will lead to improved quality of imaging and as a result improve the effectiveness of the MDT review itself. The MCN has been fortunate in attracting a Research Fellow to exploit the potential of the audit data collected since The MCN is working in collaboration in this respect, with The Department of Surgery at Glasgow University and with the West of Scotland Cancer Surveillance Unit. It is hoped that this work will identify further ways in which sustainable improvements in outcomes can be achieved. Priorities for 09/10 Map ideal patient pathway, identifying critical contact points and timescales. Review guidelines for referral and risk-based investigation. Improve MRI performance in staging disease and treatment planning and evaluate the effectiveness of the MDT review process. Page 6

8 Determine current laparoscopic surgery activity across the region and measure and report outcomes. Develop a strategy for the management of advanced disease, providing appropriate and equitable access to specialist services. Assess adherence to MCN protocol for follow-up care. Revise and re-produce patient information booklets. Undertake activity, case mix and performance analysis to assure the quality of colorectal cancer services across the region. Assess workforce and education issues associated with laparascopic surgery through audit of current consultant training requirements. Collaboration with NHS QIS, ISD, South East Scotland Cancer Network (SCAN) and the North of Scotland Cancer Network (NOSCAN) to identify a national programme of work, measuring performance at identifiable MDT level and developing a national comparative reporting framework with agreed strategy for responding to apparent under-performance. 3.3 Gynaecological Cancer MCN Lead Clinician Dr N Reed Network Manager Kevin Campbell A business case for redesign of regional gynaecological cancer services was developed by the MCN in conjunction with local NHS Boards and funding for the service has now been agreed by the Regional Planning Group through the regional prioritisation process. This is the culmination of critical examination of many years of audit data which identified inconsistencies in the management of patients across the region and efforts of the regional multi-disciplinary team to address variation in practice by delivering a cohesive, sustainable, high-quality service. This new service configuration reflects current evidence for best practice and the design drew on recognised and established service models with a similar population size. It is expected that funding will be released for the second half of the financial year 09/10. Implementation will be planned jointly between the MCN and the service management team. Some further service mapping work is ongoing in support of a number of areas of work; new service delivery model, clinical management guideline (CMG) development, Waiting Times (31 days from decision to treat to first treatment), coordination of care regionally for patients. The CMG for endometrial cancer has now been ratified by the MCN group and work is planned to revise the MCN Guideline for Management of Ovarian Cancer in line with the new delivery model. The Care Coordinator evaluation project is nearing completion. This project was funded by Macmillan Cancer Support and involved provision of an additional non-clinical resource within the regional multidisciplinary team to help coordinate ovarian cancer patients along their complex care pathway. In addition to this additional patient-focussed resource a project evaluator was also employed to undertake, with support from Glasgow University Department of Public Health and Health Policy, a formal evaluation of the impact of this post on both patient experience and the service. The evaluation report has yet to be published but preliminary results indicate considerable benefits reported by patients, however the relatively small patient cohort mean the quantitative outcomes are less marked between those patients who had access to the coordinator and patients in the study group, that did not. The successful MCN education programme delivered three well-attended events during this period, focussing on ovarian, cervical and endometrial cancers respectively. These events continue to be held in different geographic locations across the region to encourage and facilitate attendance from the wider MCN membership. Addition to the programme of a national MCN meeting is being considered for the 2009/10. Priorities for 09/10 Map patient pathway identifying critical contact points and related pathway timescales. Review guidance on use of Risk of Malignancy Index assessment in secondary care for risk assessment of ovarian cancer. Review regional MCN clinical guidelines for ovarian cancer. Planning implementation of new regional service model. Review activity and performance against recognised quality standards. Page 7

9 Collaborate with SCAN and NoSCAN to host national Gyn MCN event. Review regional MDT practice. Assess workforce, education and training issues in relation to sustained provision of new regional service. Review regional Gyn MDT and support system and produce requirements specification aligned to new service model. 3.4 Breast Lead Clinician Network Manager Hilary Dobson Christine Morran National Breast Meeting October 2008 The West of Scotland Breast MCN was formed in A priority for the network was to agree the dataset which would collect clinical audit data from all the units in the West of Scotland providing the breast cancer service. Since 2003 this data has been collected and on an annual basis the Network has reported performance against the National Clinical Standards Board for Scotland Standards, now NHS-Quality Improvement Scotland. The data is openly reported and the Network has moved from regional reporting in 2007 to national reporting annually, in collaboration with North of Scotland Cancer Network (NOSCAN) and East of Scotland Cancer Network (SCAN). In 2008 this annual event was held in Dundee in conjunction with a national Clinical Trials meeting. This 2 day event was extremely successful and well attended. Sentinel Node Biopsy The work to introduce this minimally invasive technique which greatly reduces the morbidity e.g. lymphoedema and chronic pain associated with axillary dissection began in Adhering to the recognised method for introducing this technique, the New Start Programme that strictly regulates the training of the breast surgical team, a rolling programme of implementation was commenced. By yearend 2009, sentinel node services will be provided in each Health Board area. Patient Information Booklets The West of Scotland Breast Service agreed the reprinting of the Breast Cancer Booklet. Developed with patient involvement it provides information and diary sections on the following: About My Illness, Tests and Investigations, Treatment, Looking After Myself, Feelings, Family and Friends, and Other Sources of Information. New Drug Protocol A Scottish consensus on the use of Aromatase Inhibitors established in 2005 was reviewed in May The modified version has been incorporated into the new Clinical Management Guideline for Breast Cancer prepared by the Regional Cancer Centre Breast Team. Two View Mammography Considerable work was ongoing in 2008 in order accommodate the increased number of patients diagnosed with breast cancer into the service with the introduction of 2 mammographic views at each screen programmed for Implementation will be phased in during 09/10. National funding to support the symptomatic service has been provided via the Health Department. Planning is being progressed via RCAG in conjunction with local NHS Boards. It is anticipated that an additional 140/150 cancers will be detected within the west of Scotland. Priorities for 09/10 Develop a pathway for referral to treatment reflecting the new 62 day waiting time target. Conduct a review of Multidisciplinary Team Meetings against the Core Cancer Standards. Begin the process to review Follow Up for Breast Cancer Patients. Identify any future pressures, training and education needs to improve the service. Develop a clinical pathway for the management of high risk/very high risk familial breast cancer patients. Report Network service provision for 2008 against NHS-QIS Standards. Reform clinical audit group to review the breast cancer dataset. Page 8

10 3.5 Urology Lead Clinician Network Manager Mr Khaver Qureshi Tom Kane Network Developments The MCN has agreed that there is a need to create a regional penile cancer service for patients in the WoSCAN area. It will be taken forward in the 2009/2010 workplan Work which has been ongoing for some time i.e. the national cryotherapy service has now come to completion The MCN continues to work with the Primary Care MCN to develop shared care for patients who have prostate cancer and are stable, this will allow patients a choice as to whether they want to attend hospital or be seen by their GP, the guidance being clear that if there are any concerns that the patients will be seen urgently back at hospital by urologists The MCN collated the views of clinicians regionally on MRI timings and issued a recommendation for best practice in May 2008 MDTs The lead clinician & manager visited all MDTs in summer A report was circulated on the findings (which were very positive) and was discussed at the steering group. Clinical Audit The MCN presented data for the first time at the annual educational event. The data was from 2006 & It highlighted issues with the ability of a number of areas to collect urological data. These issues have been addressed and it is anticipated that the MCN will be able to present data at the next educational event at the end of October 2009 which is considerably more complete. Education As well as presenting audit data, the MCN invited one of the lead authors from the National Institute for Health and Clinical Excellence (NICE) in England to speak on the NICE Prostate Cancer guidelines. This provoked considerable discussion and forms the basis of the MCN taking forward the development of guidelines for prostate cancer patients in the WoSCAN area. There was a presentation at the education day looking at ongoing clinical trials in urological cancers in the West of Scotland. This highlighted that recruitment levels are good but could be improved upon. Patient & Public Involvement The Network benefits from having two highly committed patient representatives attending the steering group. As a response to concerns expressed by our patient representatives, the Network made use of the services of a group of medical students doing a management module in the summer of 2008 to review satisfaction with the level of communication between the clinicians and patients. The findings were positive, indicating high levels of satisfaction with communication. That said it did present a need to review the written materials available, which the MCN will take into the 2009/2010 plan. Priorities for 09/10 Review progress of the MDTs. Instigate a service mapping exercise to include follow up for patients. Work though the process to develop a Regional Penile Cancer Service. Review current audit position. Audit current levels of referral to smoking cessation clinics, relating to bladder/renal patients in particular. Review current levels of information available for patients with urological cancers Capacity Planning; undertake a review, relating to the predicted increase of urological cancers between 2010/20. Page 9

11 3.6 Head & Neck Lead Clinician Network Manager Mr S Hislop Shirley Anne Savage (new manager currently being appointed) There have been a number of developments over the last year in the Head and Neck Cancer MCN. The MCN were asked to achieve a Network view on the future head and neck cancer service. It was agreed by the MCN that microvascular head and neck cancer surgery should be centralised. The extremely successful regional monthly clinical meeting continues to allow Network discussion of complex cases and has to date discussed 270 new patients and reviewed 75 patients. Development of a Laryngeal Clinical Management Guideline was facilitated by the MCN. CMGs for other sub-sites will be developed in PET/CT protocols were also developed nationally and ratified by the MCN. These were developed with substantial input from the West of Scotland The patient information booklets were reviewed in 2008 and will be printed for distribution to all head and neck cancer patients early this year. The Annual Educational Day was held in May with presentations on the 2006 Clinical Audit Data, PET/CT and input from each of the multi-disciplinary groups (nursing, dietetics and speech and language therapy). There were also presentations of the Cruden Research Funded projects from 2007 and applications for the 2008 funding. The 2007 head and neck cancer audit data was submitted and analysed and will be reported alongside the 2006 data. Priorities for 09/10 Support further development of neck lump clinics. Work with primary care on referral guidance for neck lump clinics. Clinical Management Guidelines development. Input to the Regional Maxillofacial Group. Investigate other ways to develop oral rehabilitation services. Distribution of new patient information booklets. Progress work with the Patient Partnership Forum. Analysis and reporting of 2008 clinical audit data. Review head and neck MDTs. Continue to support and improve monthly video-conference clinical meeting. Continue to support research through the research sub-group. 3.7 Haemato-oncology Lead Clinician Network Manager Dr Pam McKay Heather Wotherspoon Network Developments There have been a number of changes in the Haemato-oncology MCN over the past year. Dr Pam McKay replaced Dr Fitzsimons as Clinical Lead in May 2008 and Heather Wotherspoon took over the role of Network Manager in November 2008 from Shirley-Anne Savage. The Lead Clinician, since appointment in May 2008, and Manager visited colleagues (Medical, Nursing, Pharmacy and Audit staff) in each Health Board providing an opportunity to discuss various network issues including Multidisciplinary Team Meetings, Clinical Management Guidelines and Clinical Audit. MDTs Regional MDTs for lymphoma and leukaemia have been running since 2002 and 2005 respectively. Regional cutaneous lymphoma MDT established in October 2008 in conjunction with dermatology. Snap shot audit of the lymphoma MDT (tele-conferenced to 10 sites) identified significant variation in percentage of patients discussed from each site at the Regional MDT (14 to 74%). New lymphoma MDT format introduced November Page 10

12 Recent Advisory Board agreement to integrate lymphoma and leukaemia MDTs into a weekly extended regional MDT to include all haematological malignancies. Clinical Management Guidelines and Regional Chemotherapy Protocols Guidelines in place for DLBCL, follicular NHL and Hodgkin lymphoma. Guidelines for CLL, ET, PRV, CMV ratified by local AD&Ts March Myeloma CMG to be discussed at Regional Prescribing Advisory Sub Group (RPASG) April Further Guidelines for development - ALL, AML, MDS, Mantle cell lymphoma, Waldenstroms. Phase 1 of regional chemotherapy protocols circulated October Clinical Audit Audit staff in Greater Glasgow and Clyde took over responsibility for collection of lymphoma base data and lymphoma waiting times reporting from 1 October Network Audit Report on patients diagnosed between 1 January 2004 and 31 December 2006 awaiting final comments on draft before publication. Waiting Times Glasgow and Clyde Audit staff have taken over responsibility for lymphoma waiting times reporting in October The Network continues to report acute leukaemia waiting times data annually on behalf of Greater Glasgow and Clyde. Service Development Bids approved by Regional Planning Group for the following: 1. Strategic development of Adult Molecular Diagnostic Service for Haematological Cancer. 2. Regional Consultant Haemato-oncologist for Adolescents and Young Adults (12-23 years) with Blood Cancer in the West of Scotland. 3. Minimal residual disease monitoring in childhood ALL. 4. Regional CNS for Adolescents and Young Adults. Education Network continues to support the West of Scotland Lymphoma Group Educational Programme. Priorities for 09/10 Continue to facilitate data collection across the Network for lymphoma, acute leukaemia and CML. Support the move of baseline lymphoma data collection to local Health Boards. Myeloma data collection. Define key performance indicators and agree reporting standards. Facilitate the continued development and update of Clinical Management Guidelines. Facilitate the continued development of regional chemotherapy protocols. Introduce and facilitate the new regional haemato-oncology MDT. Publish and report 2007 audit data. Review current patient referral pathways and explore ways to fast track referrals to haematology. Review current patient follow-up practice across the Network. 3.8 Skin Lead Clinician Network Manager Dr Girish Gupta Tom Kane Network Developments A new clinical lead, Dr Girish Gupta came into post 1 st Jan 2009, affording the Network the opportunity to refocus its activities. MDTs A new chair of the regional MDT Mr Taimur Shoaib, has been appointed and a review of all skin cancer MDTs in the WOSCAN area is ongoing. Patient Involvement/Information A patient information subgroup has been set up and is currently reviewing current information. Page 11

13 The Network has benefited from the active participation of a highly committed patient representative. Education The Network has set up an educational subgroup. It will run its first education event aimed at General Practitioners to help in the early diagnosis and referral of patients with suspected skin cancers. It is planned that they will run x 2 per year in different Health Board areas each time. Priorities for 09/10 Review /develop local and regional Multidisciplinary Team Meetings. Carry out a service mapping exercise to include information on follow up for patients. Review current clinical audit position and seek to strengthen it. Link into national bodies to develop an appropriate campaign to increase the awareness of the dangers of excessive UV radiation as well as the risks of using sunbeds. Increase the number of subgroups in order to develop the work of the MCN as agreed by the Advisory Board. 3.9 Upper Gastrointestinal (GI) Lead Clinician Mr Colin MacKay Network Manager Christine Morran In April 2008 the Network held an education event in Glasgow. The meetings are open to all healthcare professionals involved in delivering the service. These meetings provide the opportunity for discussion and sharing of good practice and also results in identifying areas where service improvement is needed. The Network now has clinical audit established and presents the data annually. Inequity of access to services has been highlighted e.g. Clinical Nurse Specialists are not available in all Health Board areas and the Network will progress this in A programme of visits to local Multidisciplinary Team meetings to discuss the local and regional results was started. Endoscopic Ultrasound allows the clinician to accurately stage early gastrointestinal cancers. The current service was established in Glasgow and through time has expanded to become a regional service. Work began in 2008 to secure funding to ensure the sustainability of a regional service for the future. Electronic referral to the regional multidisciplinary team meeting at Glasgow Royal infirmary was developed and piloted in This system allows rapid access to the outcome of case discussion and improves communication to all parties involved in the patients care e.g. primary care. In 2008 a patient representative for Upper Gastrointestinal Cancer was welcomed onto the West of Scotland Patient Partnership Forum and the Network lead Clinician also met with the Partnership Forum members to discuss Network activity. Priorities for 09/10 Develop a pathway for referral to treatment reflecting the new cancer waiting time targets. Conduct a review of Multidisciplinary Team Meetings against the Core Cancer Standards. Begin the process to review Follow Up for Upper Gastro Intestinal and Oesophageal Cancer Patients. Identify any future pressures, training and education needs to improve the service. Produce and progress the service model for Endoscopic Ultrasound in the West of Scotland. Improve case ascertainment for patients with Hepatopancreatobilary Cancer. Page 12

14 3.10 Palliative Care Lead Clinician Network Manager Professor J Welsh Tom Kane Network Developments The MCN appointed a new lead nurse in 2008, Jacquie Lindsay. A key part of the Network activity in the last year has been supporting the actions required following the publication of the Living & Dying Well National Action Plan for Palliative Care in Scotland (L&DW). The MCN has been active in supporting the local MCNs as they work through the implications of this report and prepare local delivery plans. The MCN has worked with the Primary Care MCN to create an innovative End of Life Care Coordinator position to assist in the promotion of Advanced Care Planning; this is particularly apposite in relation to the L&DW national action plan objectives. The clinical lead chairs the one of the national subgroups formed following L&DW to look at assessment tools, advance care planning and Do Not Attempt Resuscitation (DNAR), with the Network manager also playing an active part. The MCN has been inputting the Palliative Care perspective to the tumour specific Networks in respect of Better Cancer Care; An Action Plan. The MCN has been working with the Primary Care Network and the Supportive and Psychological Care Advisory Group to create a new regional reference group as a subgroup of the two MCNs to ensure that the psychological care offered to patients in the WoSCAN area is as focused as possible. Promoted sharing among the local MCNs to try and prevent duplication of work effort. Working on Voices project for carer feedback. Provided detailed advice regarding regions morphine /diamorphine switch dilemma. Acting as a source of guidelines for e.g. Methylnaltrexone and subsequently for other new drugs approved by SMC. MDTs The MCN reviewed the referral rates of tumour specific MDTs to palliative care. It was observed that the levels of referrals and the interaction by palliative care staff differ across the tumour specific Networks. The Network gained agreement from the clinical leads group to support written referral protocols. The Network wrote to both tumour specific Networks as well as specialist palliative care to close this potential gap in patient care. This will be reviewed in the 09/10 workplan to ensure that written referral protocols are now in place. Clinical Audit The MCN has taken a lead with developing an activity database. The clinical lead and manager have met with a range of stakeholders at local, regional and national level to take this forward. This work links into that which is being done nationally under the e-health group of the National Advisory Group for L&DW. The MCN has supported the local MCNs in their efforts to ensure that hospices are linked to NHS net. Education The MCN held an education day in September 08. The event focussed on Spirituality and Communication, as suggested by a number of members of the wider Network. The Network, though its educational subgroup has been working with other Health Boards to promote the West of Scotland palliative care competencies. Patient & Public Involvement The Network has benefited from having both a patient and a carer involved in the steering and various sub groups. The lead clinician & manager have consulted with the Patient Partnership Forum on issues relating to actions that the regional palliative care MCN needs to take regarding L&DW. Priorities for 09/10 Follow up the work previously carried out regarding MDTs to ensure that the work has been progressed. Page 13

15 Work with the Primary Care Network/End of Life coordinator/l&dw subgroup to promote advanced care planning both regionally & at a national level. Work with the national subgroup formed following L&DW to look at assessment tools for symptoms likely to be indicative of death within one year, signs of nearing end of life, advance care planning and DNAR. Work with the Primary Care Network on agreed pieces of work to support psychological care through the psychological sub-group e.g. develop a patient feedback audit proforma/process. Continue with the process of developing robust audit for palliative care regionally. Develop educational initiatives in response to L&DW, especially in respect of educating generalists National - Scottish HepatoPancreatoBiliary Network (SHPBN) National Lead Clinician Mr R Parks Regional Lead Clinician Mr C MacKay National Network Manager Lindsay Campbell The website has been assigned, but is still to be populated. The HPB Patient Information Booklet has been created and is awaiting delivery from the printers. Clinical Nurse Specialists are ready to implement it. The Network is working with the Chief Scientist Office to secure funding to study the risk factors associated with HPB cancer and establish a tissue bank. The Network has audited performance for the last 6 months of 2007 but it was not reportable due to variation in the interpretation of some data elements between Boards. It was also not all collected via ecase. The Network is working with the Board clinical audit staff to remove this variation and use ecase 100% for collection. Clinical Management Guidelines have continued to be created and circulated electronically to the appropriate people while the website is unavailable. Video and telephone conferencing facilities are being improved to allow people to participate remotely and avoid travelling. Access for HPB cancer patients to clinical trials is being improved across Scotland. Priorities for 09/10 The bid to the Chief Scientist Office for funding continues with all 5 Centres (Aberdeen, Dundee, Edinburgh, Glasgow and Inverness) now engaged and the link to ecase for audit also included. Referral guidelines for Liver and Gallbladder are to be created (Pancreas already operational) and implemented. Electronic referrals will be analysed. Clinical Management Guidelines are continuing to be created or updated and will be available through the website audit will be performed but it is expected to be unreported for the same reasons as audit data should be collected 100% on ecase. Clinical Nurse Specialists will implement the Patient Information Booklet. Access for HPB cancer patients to clinical trials will continue to be improved National - Scottish Sarcoma Network (SSN) National Lead Clinician Regional Lead Clinician National Network Manager Mr Sam Patton Dr Fiona Cowie Lindsay Campbell NHS Quality Improvement Scotland accepted our 2007/8 annual report as compliance with our Quality Assurance Framework. Referral guidelines are fully operational but are being directed to named Consultants rather than the Network and as letters rather than ereferrals; therefore the Scottish Care Information team are supporting the Network to implement electronic referring and vetting as well as electronically managing the patient journey thereafter. Clinical Management Guidelines continue to be developed for all stages of the patient journey and when finalised are available through the website Page 14

16 ecase is fully operational but Board clinical audit staff have not been assigned to collect and enter the audit data for patients with soft tissue Sarcoma. Patients with bone Sarcoma are being audited by the Scottish Bone Tumour Registry. NoSCAN are manually auditing to verify all measures have improved since the Network was introduced. 2 Multi-Disciplinary Meetings are operational; one for Aberdeen, Dundee, Glasgow and Inverness; the other for Edinburgh. However, there is no MDT Coordinator for either meeting and this post is currently being recruited, with a start date of 1/4/2009 planned. When the Coordinator is in post the 2 meetings will be able to be combined into a single meeting. The Coordinator will also provide the 14 Boards with patient pathway coordination. Clinical Nurse Specialist capacity is still not matching demand. There is 1 CNS in Glasgow but none in Aberdeen, Dundee, Edinburgh or Inverness. This is being resolved with the support of the Chief Nursing Officer, Grampian, Tayside, Lothian and Highland Boards and the NOSCAN, SCAN and WoSCAN Regional Cancer Advisory Groups. The Sarcoma Nursing module has been implemented through the University of the West of Scotland and the first intake will be summer The continuing education of GP s for such a rare cancer (each GP will probably care for 1 patient with Sarcoma in their working life) is being assessed now that the Sarcoma referral poster is fully operational. Priorities for 09/10 Electronic referrals of patients to the Network starting and continually improving thereafter, ultimately aiming for 100%. Clinical Management Guidelines continuing to be developed or updated, and available via the website. Coordinator starting and coordinating both MDT s before bringing them together into a single MDT. Coordinator also supporting Boards with patient pathway management and audit staff with data collection. Board clinical audit staff starting and entering information into ecase. Support establishment of Clinical Nurse Specialist posts to ensure that capacity better matches demand National - Scottish Adult Neurological Oncology Network (SANON) National Lead Clinician Regional Lead Clinician National Network Manager Dr Robin Grant Mr Laurence Dunn Lindsay Campbell Clinical Management Guidelines continue to be developed and when finalised are available on the website; Referral guidelines are fully operational but are not resulting in referrals from GP s, so they will be updated and trialled in NHS Lothian. ECASE is fully operational but Board clinical audit staff have not been assigned to collect and enter the audit data. This is being worked on with the Boards and the Scottish Cancer Taskforce. Multi-Disciplinary Meetings are operational in Aberdeen and Inverness, Dundee, Edinburgh and Glasgow. There are MDT Coordinators for Edinburgh and Glasgow but the Edinburgh still requires to secure funding to ensure future sustainability. MDT Coordinators are needed for Aberdeen, Dundee and Inverness and this is being worked on with the 3 Boards, the 3 Regional Cancer Advisory Groups and the Scottish Cancer Taskforce. Clinical Nurse Specialist capacity is not matching demand. There is no CNS in Inverness. This is being resolved with the support of the Chief Nursing Officer, Highland Board and the NOSCAN Regional Cancer Advisory Group. The SANON Patient Information Booklet is being created in partnership with patients, carers and charities and the first draft is due summer There is no Neuropathologist in Dundee so the Scottish Pathology Network is supporting the Neuropathologists in Aberdeen, Edinburgh and Glasgow to cover Dundee so that Dundee patients receive the same care as patients in Aberdeen, Edinburgh and Glasgow. Molecular diagnostics by Neuropathologists to determine the best treatment for each patient is improving and is available from Edinburgh and Glasgow. Video and telephone conferencing facilities are available in all 5 Centres and are now being improved to be as close to staff as possible. Access for Brain and Central Nervous System cancer patients to clinical trials is being improved. Page 15