North, South East and West of Scotland Cancer Networks HepatoPancreatoBiliary Cancers National Managed Clinical Network Activity Report April 2012 March 2013 Mr Colin McKay Consultant Surgeon NMCN Clinical Lead Lindsay Campbell NMCN Manager
CONTENTS EXECUTIVE SUMMARY 3 1. INTRODUCTION 5 2. NMCN WORKPLAN AND ACTIVITIES (REPORTING PERIOD 04/2012 TO 03/2013) 6 2.1 CORE OBJECTIVES 6 2.2 INDIVIDUAL NMCN OBJECTIVES 7 2.3 OTHER NMCN ACTIVITIES 8 3. QUALITY ASSURANCE / SERVICE DEVELOPMENT AND IMPROVEMENT 9 4. KEY PRIORITY AREAS FOR THE NMCN IN THE NEXT 12 MONTHS 10 5. CONCLUSION 11 ACKNOWLEDGEMENT 12 2
Executive Summary Introduction The HepatoPancreatoBiliary (HPB) cancers National Managed Clinical Network (NMCN) continues to support and develop the clinical service for approximately 1200 new HPB cancer patients each year. Management of this patient group relies heavily on close collaboration between General Practitioners (GPs), Radiologists, Pathologists, Surgeons, Oncologists, Clinical Nurse Specialists, District Nurses and Allied Health Professionals. The NMCN continues to benefit from enthusiastic engagement from a range of healthcare professionals, administrators and managers across Scotland. There were 1184 new diagnoses of HPB cancers during 2011, 347 of liver, 649 of pancreas, 160 of gallbladder/biliary tree and 28 of duodenum. The diagnoses were split 651 in males and 533 in female. HPB cancers are predominantly an older person s cancer with the majority of patients diagnosed over 65. Survival is poor, with pancreatic cancer survival being under 4% at 5 years. Prospective clinical audit is based on Quality Performance Indicators (QPIs) as of 1 st January 2013. NMCN Objectives The HPB cancers NMCN has made progress and delivered a number of key objectives which include: Multi-disciplinary Team Working: The national priority is to ensure all cancer patients are efficiently managed by a multi-disciplinary team (MDT). The 5 HPB cancer MDTs are well established with good representation from multiple disciplines and administrative groups. Clinical Management Guideline (CMG) Review: The review process for the pancreatic and duodenal cancer CMG is in progress and will be completed by summer 2013 in line with the agreed governance framework. Implementation of National Follow Up Consensus Guidelines: Following NMCN wide engagement, the future model for follow up was presented to and ratified by the Regional Cancer Clinical Leads Groups and the Regional Cancer Advisory Groups in April 2012. Implementation is currently being assessed across the partner Boards. National Clinical Audit: The 2011 clinical audit data report published in March 2012 is available on the Network website and the action plans are monitored on a regular basis at the Advisory Board. NHS Board-level HPB Cancers Patient Pathway: NHS Dumfries and Galloway started operating their pathway in November 2012, NHS Lothian utilise the 3 HPB CMGs as their pathway, NHS Forth Valley and NHS Greater Glasgow and Clyde are drafting their pathways. Enhanced Recovery: The Clinical Lead has reviewed the enhanced recovery developments made in other cancers, shared the Edinburgh pancreatic surgery practice with Glasgow, is developing the Glasgow pancreatic surgery practice and will develop the Aberdeen, Dundee and Inverness pancreatic surgery practices during 2013/14. Quality Performance Indicator (QPI) Development: NMCN members were well represented in this national programme and following publication of the HPB cancer QPIs in late 2012 the NHS Boards have been capturing clinical audit data from the 1 st January 2013. 7% of patients participated in clinical trials in 2011/12, compared to 5% in 2010/11 and 6% in 2009/10. Professor Andrew Biankin, the University of Glasgow s new Regius Professor of Surgery, started in November 2012 an appointment that will be expected to further enhance pancreatic research within the network. 3
Key Priority Areas for the NMCN in the next 12 months The NMCN work plan has been developed with an emphasis on identifying outcomes that improve the quality of patient care and overall efficiency. Below are the objectives to be progressed in the coming year: Analyse the clinical audit data for patients diagnosed during 2012 and effectively utilise audit findings to inform and drive service improvement; Develop enhanced recovery techniques for pancreatic cancer patients across Scotland; Continually improve the operation of the 5 HPB cancer MDTs; Develop the service map for HPB cancer care across Scotland; Complete the review of the pancreatic/duodenal cancer CMG and review the cholangiocarcinoma CMG; Complete the development of NHS Board-level HPB cancer patient pathways; and Support NHS inform with the development of liver, pancreas, gallbladder and biliary tree information for the people of Scotland. 4
1. Introduction The HepatoPancreatoBiliary (HPB) National Managed Clinical Network (NMCN) continues to support and develop the clinical service for approximately 1200 new HPB cancer patients each year. Management of this patient group relies heavily on close collaboration between General Practitioners (GPs), Radiologists, Pathologists, Surgeons, Oncologists, Clinical Nurse Specialists, District Nurses and Allied Health Professionals. The NMCN continues to benefit from enthusiastic engagement from a range of healthcare professionals, administrators and managers across Scotland. Research by the Network has indicated GP access to Computer Tomography (CT) scans would facilitate early detection and this is being piloted through the Scottish Managed Diagnostic Clinical Imaging Network. In collaboration with Pancreatic Cancer Action and the Royal College of GPs online training in the early diagnosis of pancreatic cancer is now available in Scotland. Liver cancer patients are referred to the Scottish Liver Transplant Unit in Edinburgh for the Edinburgh multi-disciplinary team (MDT) to review. The Aberdeen MDT manages HPB cancer patients, Dundee Oesophageal Gastric and HPB cancer patients, Edinburgh HPB cancer patients, Glasgow HPB cancer patients, Inverness Colorectal and Oesophageal Gastric and HPB cancer patients. There were 1184 new diagnoses of HPB cancers during 2011, 347 of liver, 649 of pancreas, 160 of gallbladder/biliary tree and 28 of duodenum. The diagnoses were split 651 in males and 533 in female. HPB cancers are predominantly an older person s cancer with the majority of patients diagnosed over 65. Survival is poor, with pancreatic cancer survival being under 4% at 5 years. The NMCN website is www.shpbn.scot.nhs.uk. The purpose of this document is to report the HPB cancers NMCN activities in respect of: Performance against agreed objectives; Outcomes achieved; Challenges encountered and actions taken to remedy defined issues; and Update on progress of actions identified from the analysis of the 2010 clinical audit. NMCN Governance The Network Advisory Board video conferences three times per annum while the Network has an annual education event that includes the latest clinical audit analysis. The Network has representation from charities, external companies and NHS Boards and all relevant specialities involved in the management of HPB cancers. The Network is consulted between meetings as required by the lead and manager. Mr Colin McKay has now led the NMCN for 3 years. The membership of the Network is refreshed regularly. 5
2. NMCN Workplan and Activities (reporting period 04/2012 to 03/2013) 2.1 Core Objectives Multi-disciplinary Team (MDT) Working To ensure efficient MDT working across Scotland the Network has focused on improving the operation of each MDT as well as identifying Scotland-wide IT applications, especially for the liver cancer patients having surgery at the Scottish Liver Transplant Unit. The South East of Scotland (SEoS) MDT provides the MDT outcomes to the 4 SEoS Boards in real time through the Lothian TrakCare application to the SEoS Clinical Portal application, but cannot provide them in real time to the North of Scotland (NoS) and West of Scotland Boards as no interface between Lothian TrakCare and the other 2 regions (or 10 other Boards) currently exist. The Glasgow MDT operational policy was used as the template for the other 4 MDTs and they have all been implemented. MDT coordination in Glasgow and Inverness could be improved to match coordination in Aberdeen, Dundee and Edinburgh. In collaboration with NHS Greater Glasgow and Clyde and NHS Highland this improvement is being explored. In 2012 waiting times continue to exceed target across Scotland; with over 99% of patients waiting no longer than 31 days from deciding their treatment to their treatment starting, and over 97% of patients waiting no longer than 62 days from being referred urgently with a suspicion of cancer to their treatment starting. Implementation of National Follow Up Consensus Guidelines The follow up guidelines for liver, pancreas/peri-ampullary and gallbladder/biliary tree were updated and are available on the West of Scotland Cancer Network (WoSCAN) intranet website. The updated follow up guidelines are being included in the Clinical Management Guidelines (CMGs) as they are updated. HPB cancer patients are essentially followed up dependant on individual need due to the poor survival outcomes and overall there is no change in the follow up care. National Clinical Audit Programme The 2011 clinical audit analysis report on HPB cancers in Scotland is available on the SHPBN website. The analysis was presented at the 15 th March 2013 education day in Perth. Action plans are agreed with the NHS Boards and being monitored by the NMCN Advisory Board. Application of Enhanced Recovery Techniques Mr Colin McKay, the lead for surgery, has reviewed the enhanced recovery developments in the other cancers and the pancreatic surgery practice in Edinburgh. Glasgow is developing its pancreatic surgery practice. Southampton shared their HPB surgery practice during the 15 th March 2013 education event in Perth. The Aberdeen, Dundee and Inverness centres will develop their pancreatic surgery practice in 2013/14. Service Mapping A pilot exercise was completed in the development of a West of Scotland upper GI cancer service map which details the points of service delivery and the connections between them. The HPB cancers service map for Scotland will be developed in 2013/14. 6
2.2 Individual NMCN Objectives National Quality Performance Indicator Development Programme The Scottish Cancer Taskforce Quality Subgroup is currently taking forward the development of national Quality Performance Indicators (QPIs) for all cancers. NMCN members were well represented in the group tasked with developing the QPIs for HPB cancers. The HPB cancer QPIs were implemented on 1 st January 2013 and the fourteen NHS Boards are capturing the clinical audit data. Review of Pancreatic/Duodenum and Gallbladder/Biliary Tree Clinical Management Guidelines (CMGs) CMGs ensure the safe and equitable management of patients across Scotland whilst optimising the effectiveness of treatment and care. The review of the pancreatic/duodenum CMG is led by Mr Colin McKay while the review of the gallbladder/biliary tree CMG will be led by Mr Iain Tait in 2013/14. The review process is progressing well with input from allied health professionals, nursing, oncology, pharmacy, radiology, pathology and surgical colleagues. The pancreatic/duodenum CMG includes the link to the Royal College of General Practitioners online awareness of pancreatic cancer that was developed in partnership with Pancreatic Cancer Action charity. NHS Board-level HPB Cancer Patient Pathways NHS Fife audits its pathway through the annual clinical audit process and to improve real time communication with the Edinburgh centre the South East of Scotland is implementing a regional Clinical Portal solution. This will enable the NHS Fife team to view the outcomes of the Edinburgh MDT and the cancer care given in Edinburgh as soon as it is entered in to the NHS Lothian IT applications. NHS Dumfries and Galloway started operating its pathway in November 2012 and will also use the SEoS Clinical Portal solution. NHS Lothian is utilising the 3 CMGS (liver, pancreatic/duodenum and gallbladder/biliary tree) as its pathway and also uses the SEoS Clinical Portal solution. NHS Forth Valley and NHS Greater Glasgow and Clyde are drafting their pathways. The other NHS Board patient pathways will be completed by March 2014. 7
2.3 Other NMCN Activities Patient Information Patient information is being transitioned to NHS inform and is being led by the National Clinical Lead with the support of the Clinical Nurse Specialists and charities. Education The NMCN annual education event is well attended by members and includes the work of the advisory board, audit, research, and service improvement. The 15 th March 2013 education event in Perth included: The first Scottish mortality and morbidity review or pancreatic surgery by the five centres (devoted to Surgeons). Colleagues from Southampton sharing their enhanced recovery experience for HPB cancers. Colleagues from Manchester sharing their experience of centralisation of HPB cancer services. NHS inform demonstration of HPB cancer information for the people of Scotland. 2011 clinical audit analysis and discussion. Research Professor Andrew Biankin, the University of Glasgow s new Regius Professor of Surgery, started in November 2012 and a Scottish pancreatic research forum is being created under his chairmanship. Clinical Trials In collaboration with the Scottish Cancer Research Network 7% of patients participated in clinical trials during 2011/12. This compares with 5% in 2010/11 and 6% in 2009/10. Charities Pancreatic Cancer Action, Pancreatic Cancer UK and Pancreatic Cancer Scotland are the three major charities in Scotland and are working with the 5 centres and Maggie s Cancer Caring Centres to realise support groups for HPB cancer patients and their carers, including online support. 8
3. Quality Assurance / Service Development and Improvement The primary function of the NMCN is to facilitate continuous clinical service improvement, supporting delivery of high-quality, equitable treatment and care to patients with HPB cancers in the Scotland. The NMCN prospective clinical audit programme underpins much of the service development and improvement work of the NMCN and supports quality assurance (QA) by providing the means for regular assessment and reporting against recognised and agreed measures of service performance and quality. The annual quality assurance of service provision utilises twelve agreed criteria and the latest report of audit data is based on 1184 new diagnoses of HPB cancers presenting in 2011, set against results obtained from the previous two reports. The NMCN QA process requires the multi-disciplinary teams to critically review and verify their own results before being collated to provide a regional and national comparative report of performance against agreed measures and variance between MDTs and regions. The report of the 2011 clinical audit data was published in March 2013 and can be found in the Network website. Audit and Governance Process In accordance with agreed governance procedures, Boards were asked to produce Action/Improvement Plans, in response to audit findings, to take forward recommendations set out in the Audit Report; the expectation thereafter is that these actions will be progressed and monitored via local governance structures. Plans are expected to be submitted to the Regional Information Manager within two months of publication of the report. An Action/Improvement Plan template is provided to ensure consistency and standardisation across the three regions. The NMCN Manager/Clinical Lead will be reviewing Board Action Plans to identify priorities for co-ordinated action and these, along with progress against specific Board actions monitored throughout the year by the Advisory Board under the standing NMCN Work Plan agenda item. Action Plan Progression Recommended actions on the basis of the key findings of the audit report were directed to Boards requesting that local plans are developed to address areas of deficiency identified. From the 2010 clinical audit report all of the Boards produced Action/Improvement plans and outlined below is a high level summary of progress: The early diagnosis of HPB cancers is achieved through computer tomography imaging as soon as possible and this has been piloted by GPs in select NHS Boards through the Managed Diagnostic Imaging Clinical Network. NHS Board-level HPB cancer patient pathways are being implemented, again to diagnose as early as possible. Variations in pancreatic surgery mortality have been considered by all five centres, culminating in the first mortality and morbidity review on the 15 th March 2013. The North of Scotland has formed a short life working group to review upper gastrointestinal (oesophageal gastric and HPB) services, currently delivered from the three centres of Aberdeen, Dundee and Inverness. The pancreatic/duodenum CMG is being reviewed to ensure all suitable patients receive adjuvant chemotherapy following pancreatic surgery. The five MDTs email the weekly MDT outcomes to colleagues in the fourteen NHS Boards to maximise case ascertainment, and the SEoS Clinical Portal further enhances this communication. 9
The five centres are able to provide the 14 NHS Boards with customised reports on patients who received chemotherapy to ensure complete data capture. NHS Board Audit Facilitators work closely with their clinical colleagues to ensure complete data capture, and this has been enhanced by the training day in September 2012 for capturing QPIs. NHS Fife and Lanarkshire have improved case ascertainment and NHS Fife is preparing to utilise the SEoS Clinical Portal solution. Aberdeen has improved their capturing of surgical data. Aberdeen has improved their verification process. Across all Boards all the actions identified in the Board-specific action/improvement plans have been reviewed and a progress/action status provided in line with the governance framework; the majority of actions are described as complete and for those that remain ongoing a further update will be requested for the next Advisory Board meeting, as the expectation is that all actions would be addressed prior to the onset of the next audit reporting schedule. The 2012 clinical audit data will be analysed, presented and reported during 2013/14. Escalation Process Any service or clinical issue which the Advisory Board considers not to have been adequately addressed will be escalated to the Regional Lead Cancer Clinician and relevant Territorial NHS Board Cancer Clinical Lead by the NMCN Clinical Lead. There have been no service or clinical issues that have required to be escalated but the North of Scotland are reviewing upper gastrointestinal services based on the 2009, 2010 and 2011 data. 4. Key Priority Areas for the NMCN in the next 12 months The NMCN work plan has been developed with an emphasis on identifying outcomes that improve the quality of patient care and overall efficiency. Below are the objectives to be progressed in the coming year: Analyse the 2012 HPB cancers clinical audit data to inform and drive service improvement; Continue the development of enhanced recovery for pancreatic surgery; Continue to improve the operation of the five HPB MDTs by working with ehealth colleagues on real time communication across Scotland; Develop an HPB cancers service map of Scotland; Complete the reviews of the pancreatic/duodenal and gallbladder/biliary tree clinical management guidelines; Complete the development of NHS Board-level HPB cancer patient pathways; and Support the development of HPB cancers patient information in NHS inform. The work plan is published on the Network website. 10
5. Conclusion This has been a productive year and the continued support of patients, carers, charities, external companies, universities, local government and the NHS is essential in order for the NMCN to achieve their work plan objectives. Over the last 12 months, the NMCN has continued to work closely with local, regional and national colleagues across Scotland to support the MDTs. The NMCN is reviewing the pancreatic/duodenal and gallbladder/biliary tree CMGs. The NMCN has regularly reviewed the implementation of the national consensus guidelines for follow up of HPB cancers, which indicates that the guidelines have been accepted and utilised. These developments are being integrated through the NHS Board-level HPB cancer patient pathways and will continue to drive consistency of practice and provide improved care for patients with HPB cancer in Scotland. Looking ahead the membership welcomes the opportunity to work with the Detecting Cancer Early programme to detect HPB cancers as early as possible; work with the Enhanced Recovery After Surgery programme to enhance recovery after HPB cancer surgery; work with the Systemic Anti- Cancer Therapy and Radiotherapy programme boards on developments in HPB cancers systemic anti-cancer therapy and radiotherapy; and work with the Transforming Care After Treatment programme for HPB cancer patients and carers. 11
Acknowledgement This report represents the achievements and challenges progressed across the fourteen partner NHS Boards of the : NHS Ayrshire & Arran NHS Borders NHS Dumfries & Galloway NHS Forth Valley NHS Fife NHS Grampian NHS Greater Glasgow and Clyde NHS Highland NHS Lanarkshire NHS Lothian NHS Orkney NHS Tayside NHS Shetland NHS Western Isles We would like to thank all members and active participants in the cancer network for their continued support of the National Managed Clinical Network, without their efforts this level of progress would not be possible. We would also like to thank the Scottish Children and Young people with Cancer Managed Service Network, the Scottish Cancer Research Network, the Scottish Primary Care Cancer Group, the Scottish Managed Diagnostic Imaging Clinical Network, the Scottish Pathology Network and the Scottish Imaging Network for their support and collaboration. 12