NATIONAL MANAGED CLINICAL NETWORK FOR ADULT NEURO-ONCOLOGY ANNUAL REPORT 2010/11

Transcription

1 NATIONAL MANAGED CLINICAL NETWORK FOR ADULT NEURO-ONCOLOGY ANNUAL REPORT 2/11 Hosted by West of Scotland Cancer Network (WoSCAN) North, South East and West of Scotland Cancer Networks

2 Contents Contents...ii Executive summary... 1 Introduction... 1 Aim and purpose of network... 2 Plans for the year ahead... 2 Network governance... 2 Detailed description of progress over the reporting period... 3 Appendix 1: Network membership... Appendix 2: Finance... Appendix 3: Glasgow Centre MDT 2 audit analysis... 7 North, South East and West of Scotland Cancer Networks

3 Executive summary All guidelines have been implemented apart from Radiology, which is in review. The Glasgow Centre has audited its MDT in 28, 29 and 2. The auditing of the Edinburgh Centre through e-case for 2 is in progress. The Scottish Neurosurgery Managed Service Network Audit Facilitators are capturing 211 patient data into e-case across Scotland. In collaboration with the Scottish Cancer Research Network it was confirmed that 8% of patients participated in clinical trials during 29-, the first time this has been reported through the Network. Board-level patient pathways have been trialled successfully in NHS Forth Valley and will be rolled out in Aberdeen and Dundee MDTs have MDT Coordinators. Videos on diagnosing headaches and papilloedema have been created for GPs and Optometrists and are currently available through Facebook. The patient information booklet is being trialled in the Glasgow Centre. Brain Tumour UK has recruited a Scottish Development Coordinator and the Samantha Dickson Brain Tumour Trust has held patient information days in Edinburgh and Glasgow. NHS Highland has assigned an Audit Facilitator to capture brain/central nervous system patients data into e-case, the first Board to do so. Introduction Brain and Central Nervous System (CNS) tumours have an incidence of approximately 7.1/, and account for less than 2% of all tumours. Most recent Cancer in Scotland statistics published in October 2 report that the lifetime risk of developing brain tumour is 1 in 1 for males and 1 in 21 for females and that tumours of brain, meninges and CNS are projected to increase from 1,791 between 21-2 up to 2,298 between The 1 year survival for all primary brain and CNS tumours (benign and malignant) is between 31-3% and the year survival is between 12-13%. The Glasgow Centre MDT audit analysis of 2 is appendix 3. The Edinburgh Centre is analysing its 2 audit of primary tumours captured in e-case. The Scottish Adult Neuro-Oncology Network (SANON) is a National Managed Clinical Network as defined by the NHS MEL (1999) and NHS HDL (27) 21.The Network links groups of health professionals and organisations from primary, secondary and tertiary care, and promotes working in a coordinated manner with the aim of delivering high quality, clinically effective and equitable care to patients irrespective of their geographical location. Dr Robin Grant (Edinburgh) is the National Clinical Lead with Professor Roy Rampling (Glasgow) as Deputy Lead until August 2. Lindsay Campbell is the SANON National Managed Clinical Network Manager. Lynsey Connor provides administrative support and Keith Bryce/Douglas Grattan provides web site support from the West of Scotland Cancer Network (WoSCAN). Joannie McCutcheon is our Patient Participant and also manages our web site ( The Network is hosted by the West of Scotland Cancer Network (WoSCAN) which in turn is hosted by NHS Greater Glasgow and Clyde. Funding for the National Clinical Lead, Network Manager and WoSCAN support is provided by National Services Division. The Network comprises of persons with an interest in the management and support of patients with brain tumours across Scotland and a desire to work together to improve existing services. The Network also includes links and support from patients, carers, charities and external companies. The Network is integrated with the North of Scotland Cancer Network (NOSCAN) and the South East of Scotland Cancer Network (SCAN). North, South East and West of Scotland Cancer Networks 1

4 Aim and purpose of network The Network s aim is the delivery of high quality, clinically effective and equitable care to patients irrespective of where they reside in Scotland. The purpose of the Network is to continually improve the quality of care to patients through partnership working with patients, their families or carers, charities, external Companies and the NHS Scotland staff who care for patients with brain/central nervous system tumours. Plans for the year ahead The work plan is being finalised and the objectives are; 1. Optimise effectiveness and efficiency of Multi-Disciplinary Team (MDT) review meetings by implementing agreed actions to address gaps and deficiencies identified during the 2/11 WoS regional review 2. Support development and implementation of approval process for brain/central nervous system Clinical Management Guideline (CMG) 3. Complete review of evidenced based guidelines for follow up of all cancer patients in Scotland. Support delivery of the national clinical audit work programme for 211/12. Use the Forth Valley pathway to guide the other 13 Boards in creating and implementing the corresponding Board specific pathways for brain/central nervous system patients Network governance Dr Robin Grant, Consultant Neurologist, Department of Clinical Neurosciences, NHS Lothian is the National Clinical Lead for the Network. The Network holds quarterly meetings to review progress and educate and one of these meetings is also the annual national meeting. The constitution is being updated. Dr David Hurman is the lead for the Aberdeen Centre, Dr Hannah Lord for Dundee, Dr Sara Erridge for Edinburgh, Mr Jerome St George and Dr Allan James for Glasgow and Dr Kay Kelly for Inverness. Dr Julie Read leads for Primary Care, Dr Rod Gibson (until November 2)/Dr Shona Olson (from November 2) for Radiology, Dr Willie Stewart (until October 2)/Dr Colin Smith (from October 2) for Pathology, Prof Ian Whittle for Surgery, Dr David Hurman for the Scottish Medicines Consortium (SMC), Dr Allan James for Oncology, Dr Alison Mitchell for Palliative Care, Dr Ally Rooney for Supportive and Psychological care, Dr Robin Grant for Audit and Research, Dr Hannah Lord for Education and Training, Shanne McNamara for Nursing and Allied Health Professionals and Pathways, and Joannie McCutcheon for the Website. The Network works closely with the Scottish Neurosurgery Managed Service Network, the British Neuro Oncology Society and our international colleagues. The Network is governed by the West of Scotland Cancer Network, in partnership with the North and South East of Scotland Cancer Networks; with an annual report presented to their Regional Cancer Advisory Group. The Regional Cancer Networks are governed by the Regional Planning Groups. North, South East and West of Scotland Cancer Networks 2

5 Detailed description of progress over the reporting period Objective Planned start/ end dates EFFECTIVE: Providing services based on scientific knowledge Radiology, Surgery and Oncology guidelines finalised and implemented In collaboration with the Scottish Cancer Research Network ensure access to trials Apr 2 / Mar 211 Apr 2 / Mar 211 Description of progress towards meeting objective EFFICIENT: Avoiding waste, including waste of equipment, supplies, ideas, and energy In collaboration with the Health Boards expand Apr 2 / Coordinators to Aberdeen and Dundee Centres Mar 211 Surgery, Oncology, Epilepsy and Genetics guidelines implemented and Radiology guideline in review. 8% of patients with brain/central nervous system tumours participated in clinical trials during 29-. Aberdeen MDT Coordinator coordinates Aberdeen/Inverness MDT and Dundee MDT. Outcome / evidence Implemented guidelines added to SANON website. As reported by the Scottish Cancer Research Network. Weekly MDTs operational. Undertake an in-depth critical review of MDT practices across the region to optimise efficiency and effectiveness Apr 2 / Mar 211 Glasgow MDT operational policy being updated. Edinburgh MDT operational policy implemented. Aberdeen/Inverness and Dundee MDTs operational policies will be created in Weekly MDTs managing increasing numbers of patients between 29 and 2. EQUITABLE: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status In collaboration with the Health Boards and Scottish Cancer Taskforce establish Auditors to enable prospective audit Undertake preparatory work to identify top QPI s and develop initial list of QPI s to report against Apr 2 / Mar 211 Apr 2 / Mar 211 Through the Scottish Neurosurgery Managed Service Network an Audit Facilitator for each MDT is operational, with Edinburgh auditing from 2 and Aberdeen/Inverness, Dundee and Glasgow auditing from 211. Brain/Central Nervous System QPIs are sequenced for audit will be analysed using measurability criteria agreed with Edinburgh Centre. Patient data being captured into e-case and Edinburgh Centre analysing 2 audit. QPI sequence developed by National Cancer Quality Sub-Group. Measurability criteria RAG status North, South East and West of Scotland Cancer Networks 3

6 Objective In collaboration with the Health Boards and Scottish Cancer Taskforce expand Clinical Nurse Specialists to Inverness Centre Planned start/ end dates Apr 2 / Mar 211 Description of progress towards meeting objective NHS Highland is working towards this but not possible in 2-11 or Outcome / evidence being facilitated by WoSCAN Information Team. NHS Highland will advise if possible in RAG status Videos on the diagnosis of headaches and papilloedema for GPs and Optometrists were developed by the Edinburgh Centre, and are currently available through Facebook. The waiting times of patients were sampled and the National Cancer Waiting Times Team is deciding how brain/central nervous system tumour patients will be measured going forward. The patient information booklet has been trialled in Glasgow from July 2 to March 211 and those patients are being surveyed. The results of the survey will be incorporated into the updating of the booklet so it can be offered to all patients across Scotland. The British Neuro-Oncology Society 2 conference was in Glasgow and was the best attended conference yet. The Network was able to support the conference and the patient information booklet was launched at the end of the conference. The Samantha Dickson Brain Tumour Trust had patient information days in Edinburgh and Glasgow and is planning more days in Scotland. Brain Tumour UK s Development Coordinator for Scotland, Gus Ironside, started in June 2 and has integrated with the five Centres to provide support services to patients in Scotland. The 2 national meeting in Aberdeen on th November 2 was a huge success with the patient, family and charity session running in parallel with the NHS session. We were supported by external companies, including a revolutionary 3D viewer that did not require 3D glasses. SANON fed back comments to NICE on their guidelines for rare brain tumours: optic nerve glioma; PNET, Pineal Region Tumours; Primary CNS Lymphoma. North, South East and West of Scotland Cancer Networks

7 The Supportive and Psychological Care sub-group continues to meet regularly and has a number of ongoing projects, including a national survey of existing psychological referral pathways for neuro-oncology patients, and the development of communications between the NHS and brain tumour charities active in Scotland. North, South East and West of Scotland Cancer Networks

8 Appendix 1: Network membership Y:\MCN\Working Directory\MCNs - Dise Appendix 2: Finance National Clinical Lead is funded for 1. sessions per week. West of Scotland Cancer Network funds 1 WTE Manager (Band ) and hours Administration / Information Management support (Band /), to support 3 National Networks. North, South East and West of Scotland Cancer Networks

9 Appendix 3: Glasgow Centre MDT 2 audit analysis Cases Discussed (January 2 December 2) January February March April May June July August September October November December Return Cases (January 2 December 2) Total Returns January February March April May June July August September Octobe r November December North, South East and West of Scotland Cancer Networks 7

10 Adult / Paediatric Cases (January 2 December 2) Adult Paediatric January February March April May June July August September October November December MDT Referrals (January 2 December 2) 3 Neurosurgery 2 Oncology 2 Other 1 January February March April May June July August September October November December North, South East and West of Scotland Cancer Networks 8

11 Neuro-Oncology Dataset (January 2 December 2) Glioma I & II Glioma III & IV Meningioma Metastases Pituitary Other Tumour Non Tumour 2 33 Deceased Patients (January 2 December 2) Total Deceased 1 January 18 February 1 March 13 April 18 May 9 June 13 July 13 August September October November December North, South East and West of Scotland Cancer Networks 9

12 Paediatrics Radical Treatment Palliative Management No Further Treatment 28 Adults 22 Radical Treatment Palliative Management No Further Treatment North, South East and West of Scotland Cancer Networks