North, South East and West of Scotland Cancer Networks Brain/Central Nervous System Tumours National Managed Clinical Network Activity Report April 2014 March 2015 Dr Avinash Kanodia Consultant Radiologist NMCN Clinical Lead Lindsay Campbell NMCN Manager
CONTENTS EXECUTIVE SUMMARY 3 1. INTRODUCTION 5 2. NMCN WORKPLAN AND ACTIVITIES (REPORTING PERIOD 04/2014 TO 03/2015) 5 2.1 CORE OBJECTIVES 5 2.2 INDIVIDUAL NMCN OBJECTIVES 6 2.3 OTHER NMCN ACTIVITIES 7 3. QUALITY ASSURANCE / SERVICE DEVELOPMENT AND IMPROVEMENT 7 4. KEY PRIORITY AREAS FOR THE NMCN IN THE NEXT TWELVE MONTHS 8 5. CONCLUSION 8 ACKNOWLEDGEMENT 9 2
Executive Summary Introduction The purpose of this document is to report the Brain/Central Nervous System (CNS) Tumours National Managed Clinical Network (NMCN) activities in respect of: Performance against agreed work plan objectives; Outcomes achieved; and Challenges encountered and actions taken to remedy defined issues. This report covers the activity of the NMCN between April 2014 and March 2015. It also reports on service developments and improvements based on the analysis of 2012 Cancer Registry data and 2013 activity data captured by the multi-disciplinary teams (MDT), as well as looking forward from April 2015 to March 2016. NMCN Objectives The brain/cns tumours NMCN has made progress and delivered a number of key objectives which included: National Clinical Audit Scottish Cancer Registry data for 2012 has been utilised for analysis until the publication of the first quality performance indicator report scheduled for later this year. Guideline Development and Review Development and review of Clinical Management Guidelines (CMGs) and Clinical Guidance Documents remain a core component of NMCN activity. The West of Scotland brain/cns tumours MDT operational policy and the Scottish epilepsy management, Scottish epilepsy treatment and Scottish genetics guidelines were updated. The Scottish high grade glioma radiology guideline was incorporated into the CMG. The Scottish brain/cns tumour follow-up guidelines and NHS Forth Valley brain/cns tumour patient pathway reviews are in progress. Education The 2014 national meeting was in Aberdeen and included an update on the Maggie s Care Centre in Aberdeen. The Supportive and Psychological Care sub-group met every four months with the three major brain/cns charities in Scotland to improve working together and expand research. Professors Anthony Chalmers and David Wyper chaired the annual research meeting between the NMCN and the Scottish Imaging Network (SINAPSE) in September 2014. Transforming Care After Treatment (TCAT) The NMCN is supporting the TCAT work through the national project for end of treatment summaries for teenagers and young adults with cancer being led by Drs Angela Edgar (Edinburgh) and Jeff White (Glasgow). Enhanced Recover After Surgery The Glasgow centre is analysing patient diaries to determine the development of a brain/cns tumour pathway. Multi-disciplinary Team Working The national priority is to ensure all patients with cancer are efficiently managed by a MDT. The four brain/cns tumour MDTs are well established with good representation from multiple disciplines and administrative groups. 3
The Aberdeen and Inverness MDT also meet with the Edinburgh centre monthly to review challenging cases, especially when the specialist care is delivered from Edinburgh. NHS Board-level Brain/CNS Tumour Patient Pathways NHS Forth Valley is reviewing its pathway after three years of operation. NHS Greater Glasgow and Clyde pathway was implemented in June 2014. NHS Ayrshire & Arran and NHS Lanarkshire pathways are in progress. Patient Information The generic information is available in the cancer library of NHS inform and the tailored information is being developed in Info For Me on NHS inform by NHS 24. Service Map The high-level West of Scotland service map was reviewed during 2014, the updated baseline position identifies the points at which services are delivered, the service components available at each and the connections between these points which represent the referral pathways for access to specialist services. Clinical Trials 43% of patients participated in clinical trials during 2013/14 (33% during 2012/13, 22% during 2011/12, 5% during 2010/11 and 8% during 2009/10. 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. A number of objectives will be carried over from this year as guideline development and review, education, enhanced recovery after surgery, quality performance indicators, service map and TCAT continue as priorities in the work plan. The NMCN objective for development of brain/cns tumour patient pathways for each NHS Board is continuing to completion. 4
1. Introduction The brain/cns tumours national managed clinical network (NMCN) was established in 2006 as a means of delivering equitable high quality clinical care to all brain/cns tumour patients across Scotland, covering a population of 5.328 million 1. The brain/cns tumours NMCN continues to support and develop the clinical service for brain/cns tumour patients. The 2012 analysis of Cancer Registry indicates the number of brain/cns tumours in that year was 440. The effective management of these patients throughout Scotland relies on co-ordinated delivery of treatment and care that requires close collaboration of professions from a range of specialties. Most brain/cns tumour patients are discussed initially in the five centres across Scotland (Aberdeen, Dundee and Inverness in the North; Edinburgh in the South East; Glasgow in the West) and referred to one of the four multi-disciplinary teams (MDTs with Aberdeen and Inverness being a joint MDT). Small numbers of brain/cns tumour patients are managed by other MDTs (e.g. pituitary) with the support of the brain/cns tumours MDTs. The NMCN website is www.neurooncology.scot.nhs.uk. The purpose of this document is to report the brain/cns tumours 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 four MDTs. NMCN Governance The Executive Board video conferences twice per annum with representation from patients, charities and the relevant specialities from the five centres involved in the management of brain/cns tumours. Dr Avinash Kanodia has now led the NMCN for over nineteen months. The membership and terms of reference of the NMCN is detailed on the NMCN website. 2. NMCN Workplan and Activities (reporting period 04/2014 to 03/2015) 2.1 Core Objectives National Clinical Audit Programme A key area of the brain/cns tumours NMCN was to effectively utilise audit findings to inform and drive service improvement. Prospective clinical audit is operational as of January 2014 and the NMCN was able to analyse Cancer Registry for patients diagnosed during 2012 and the brain/cns tumour MDTs activity data for patients referred during 2013. Guideline Development and Review Clinical management guidelines (CMGs) ensure the safe and equitable management of patients across Scotland whilst optimising the effectiveness of treatment and care. The NMCN reviewed the West of Scotland brain/cns tumours MDT operational policy in March 2015 and the Scottish epilepsy management, Scottish epilepsy treatment and Scottish genetics guidelines in December 2014. In March 2015 the NMCN incorporated the high grade glioma radiology guideline into the glioma CMG. The NMCN is currently reviewing the Scottish brain/cns tumour follow-up guidelines and NHS Forth Valley brain/cns tumour patient pathway. CMGs and guidance documents can be accessed from the West of Scotland Cancer Network intranet site. 1 http://www.gov.scot/topics/people/equality/equalities/populationmigration 5
Education The 31 st October 2014 national meeting in Aberdeen included: Multimodality MRI for low grade astrocytomas. Common Genetic Brain Tumour Syndromes. As Good As It Gets - Can We Improve Communication? Fatigue. Maggie s Aberdeen. Neuro-Rehabilitation. Low grade tumours, surgery or watch and wait? Awake Craniotomy - Aberdeen experience. The supportive and psychological care subgroup continues to meet every four months and includes the three brain tumour charities operating in Scotland (brainstrust, Brain Tumour Action and The Brain Tumour Charity) and Maggie s. Research is expanding in the Aberdeen, Edinburgh and Glasgow centres. Professors Anthony Chalmers and David Wyper continue to organise the annual imaging research meeting between the NMCN and the Scottish Imaging Network (SINAPSE), with the 2 nd September 2014 meeting in Strathclyde University. The 8 th October 2015 meeting is being organised. Enhanced Recovery After Surgery (ERAS) Successful implementation of ERAS is proven to lessen the psychological and physiological impact on patients undergoing major surgical treatment, reducing post-operative complications and overall length of hospital stay. The Glasgow centre is analysing patient diaries to determine the development of a brain/cns tumour pathway. Transforming Care After Treatment (TCAT) In support of the national programme, the NMCN is supporting the national project to develop end of treatment summaries for teenagers and young people with cancer, being led by Drs Angela Edgar (Edinburgh) and Jeff White (Glasgow). Service Map Work was undertaken to review the high-level map of brain/cns tumour services in the West of Scotland. The updated baseline position describes the points of delivery, the service components available at each point and the interconnections between these in regard to access to tertiary services. The mapped information was included in a consolidated regional report which was presented to the Regional Cancer Clinical Leads Group in October 2014 and shared with Board Cancer Managers. 2.2 Individual NMCN Objectives Multi-disciplinary Team Working To ensure efficient MDT working across Scotland the NMCN has focused on improving the operation of the four brain/cns tumour MDTs. The five centres continue to support each other to sustain services. The North of Scotland is currently reviewing all cancer services. 6
NHS Board-level Brain/CNS Tumour Patient Pathways NHS Forth Valley is reviewing its pathway after three years of operation, including improvement proposals to the integrated health and social care partnerships. NHS Greater Glasgow and Clyde pathway was implemented in June 2014. NHS Ayrshire & Arran and NHS Lanarkshire pathways are in progress. Patient Information The generic information is available in the cancer library of NHS inform. The tailored information is being developed in Info For Me on NHS inform by NHS 24. 2.3 Other NMCN Activities Clinical Trials In collaboration with the Scottish Cancer Research Network 43% of patients participated in clinical trials during 2013/14. This compares with 33% in 2012/13, 22% in 2011/12, 5% in 2010/11 and 8% in 2009/10. Charities The three major brain/cns tumour charities (brainstrust, Brain Tumour Action and The Brain Tumour Charity) operating in Scotland are working with the five centres and Maggie s Cancer Caring Centres to realise support groups for brain/cns tumour patients and their carers. They also provide patient and carer information days across Scotland with the support of the five centres. In 2014 they held the first family fun day at Blair Drummond safari park and this will be repeated in 2015. 3. Quality Assurance / Service Development and Improvement The primary function of the NMCN is to facilitate continuous service improvement, supporting delivery of high-quality, equitable treatment and care to patients with brain/cns tumours in Scotland. The NMCN prospective clinical audit programme underpins much of the service improvement work of the NMCN. It supports quality assurance (QA) by providing the means for regular assessment, and reporting, against recognised and agreed measures of service performance and quality. The National Cancer Quality Programme requires comparative assessment of performance to be published annually by Regional Cancer Networks and every three years a national comparative report will be produced by Information Services Division (ISD) containing trend and survival analysis. Audit and Governance Process The NMCN prospective clinical audit programme started in January 2014 with the implementation of the brain/cns tumour Quality Performance Indicators (QPIs). Until the first report of the QPIs (scheduled for August 2015) Cancer Registry and MDT activity data is being utilised. Scottish Cancer Registry data for 2012 indicates 440 brain/cns tumour patients were diagnosed, 48% received surgery, 29% systemic anti-cancer therapy and 49% radiotherapy. Glioblastoma was the most common morphology and thirteen of the fourteen NHS Boards captured brain/cns tumour patients (the fourteenth had no brain/cns tumour patients to capture). 7
Service Development and Improvement During 2013 the Glasgow centre MDT analysed its activity data and identified a 29% increase in the number of cases being discussed, and have started their MDT earlier and finish it later to accommodate this. 4. Key Priority Areas for the NMCN in the next twelve 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: Core Objectives Manage the development/review of brain/cns tumour clinical management guidelines/clinical guideline documents; Participation in the rolling programme of national education events; utilising the opportunity for learning and sharing of current best practice and innovation; Maintain a focus on Enhanced Recovery After Surgery to support national implementation; Support delivery of the national cancer quality programme for 2015/16, ensuring the regional/national governance process is adhered to; Annual update of the national service map for brain/cns tumour service provision, detailing the points of service delivery and the connections between them; and Continue to support the Transforming Care After Treatment programme of work, in particular, supporting the national project to develop end of treatment summaries for teenagers and young people with cancer. Individual MCN Objectives Continue working with the fourteen NHS Boards to develop or review brain/cns tumour patient pathways. The work plan is published on the NMCN website. 5. Conclusion This has been a productive year and the NMCN, with the support of the Executive Board, has continued to work closely with local, regional and national clinical and management teams across Scotland to progress the work plan objectives. Ongoing development and update of CMGs and other clinical guidance continue to drive consistency of practice and provide improved care for patients with brain/cns tumours in Scotland. Recognising the pressures on clinical time, the NMCN is looking at the most time efficient and effective way to engage and involve members in NMCN activities to ensure essential clinical input to the ongoing improvement and development of brain/cns tumour services in Scotland. Looking ahead the membership welcomes the opportunity to ensure the MDTs continue to improve their functioning and to continue to support and improve the treatment pathway and effective patient journey around local, regional and national services. 8
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 Neurosurgery 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. 9