Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services. Brain and CNS Cancer Network Site Specific Group.

Transcription

1 Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services Brain and CNS Cancer Network Site Specific Group Annual Report 2015 Version 1.0 1

2 This Annual Report was prepared by: Venkat Iyer, Chair of the SWAG Brain and CNS NSSG, Consultant Neuro-Surgeon, North Bristol NHS Foundation Trust Helen Dunderdale, SWAG Cancer Network NSSG Support Manager This Annual Report has been agreed by: Name Position Organisation Date Agreed Christopher Herbert Consultant Clinical Oncologist University Hospitals Bristol NHS Foundation Trust (UH Bristol) Christopher Price Consultant Neurologist Taunton and Somerset NHS Foundation Trust (TST) Geoff Pye Penny Kehagioglou Sam Guglani Sarah Levy Consultant Colorectal Surgeon Consultant Clinical Oncologist Consultant Clinical Oncologist Neuro-Oncology Clinical Nurse Specialist Weston Area NHS Health Trust (WAHT) Royal United Hospitals Bath NHS Foundation Trust (RUH) Gloucestershire Hospitals NHS Foundation Trust (GLOS) Yeovil District Hospital NHS Foundation Trust (YDH) Version 1.0 2

3 Brain and CNS Contents Section Contents Measures Page 1 Overview, achievements and challenges 1.1 Overview of report Overview of service Achievements and key service improvements over the past 4 12 months 1.4 Challenges for the NSSG 5 2 The Network Group Meeting and Membership 14-1C-103/4k 2.1 Chair of the NSSG Network Group Membership Attendance Spreadsheet Extended Members of the NSSG Network Group Quoracy Service Development Implementation of The National Cancer Survivorship Initiative The service development function of the NSSG meeting 14-1C-105k Chemotherapy Treatment Algorithms 5 Patient Experience and Feedback User Involvement Feedback from The National Cancer Patient Experience Survey 14-1C-108k 14-1C-116k Clinical Outcome Indicators and Audits 14-1C-117k 6.1 The Network Audit for Version 1.0 3

4 6.2 The Network Audit for Clinical quality indicators 11 7 Clinical Trials and 12 Research Activity 14-1C-118k 7.1 Discussion of Clinical Trials Recruitment Action Plan Current Clinical Trials Activity Recruitment of Teenagers and Young Adults (TYA) Overview, achievements and challenges 1.1 Overview of report This report reflects the period of activity for the NSSG from 1 st January 2015 to 31 st December It contains a summary of the activity of the Brain and CNS NSSG for this period measured against several key performance indicators that have been outlined in the National Cancer Peer Review Programme. The report should be reviewed alongside three other key documents for the NSSG: the Constitution, Clinical Guidelines and the Work Programme. The Brain and CNS NSSG Constitution provides an overview of how the NSSG operates, outlining the general working processes of the NSSG, the patient referral pathways and the guidelines to which the NSSG adheres. The Clinical Guidelines outline the diagnostic and treatment processes agreed by the network group. The Work Programme summarises the key areas for growth, development and improvement of the NSSG over the next financial year (and beyond where appropriate). All four documents should be reviewed together to give a full overview of the NSSG, its performance and its future plans. 1.2 Overview of service The Brain and CNS site-specific group aims to oversee, support and bring together the viewpoints of all the multi-disciplinary teams working within Brain and CNS cancer services across the Network. The group also aims to ensure the same standard of care and treatment with this type of cancer across the Network. The NSSG works to ensure implementation of NICE guidelines for investigation and treatment of Brain and CNS cancers and to provide guidelines for supportive care. It supports a programme of education on key developments in the field of Brain and CNS cancer. It also aims to continue and expand the clinical trials programmes available within individual trusts. 1.3 Achievements and key service improvements over the past 12 months The following are noted as key achievements and service improvements of the Brain and CNS NSSG over the past 12 months (during 2015): The NSSG has undergone reconfiguration in line with the national cancer clinical networks, inviting Gloucester and Cheltenham NHS Trust to collaborate should they find it of benefit The NSSG has appointed a patient representative The NSSG has agreed a clinical audit Version 1.0 4

5 The NSSG has produced high grade and low grade glioma treatment pathways The NSSG has appointed two new neuro-oncology surgeons. 1.4 Challenges for the NSSG The key challenges for the Brain and CNS NSSG moving forward are highlighted below: Ensuring that all Trusts in the Network regularly contribute to the educational and audit programmes. Continuing to expand and support the clinical trials programme Improving diagnostic capacity Streamlining patient pathways to improve the patient experience Re-stratification of patient follow up. 2. The NSSG Meeting and Membership (measure 14-1C-103/104k) 2.1 Chair of the NSSG Mr Venkat Iyer has been the Chair of the Brain and CNS NSSG since A list of responsibilities for the NSSG, for the Chair, and for other members of the NSSG, plus the NSSG terms of reference, can be found in the paper Recurrent Arrangements for Cancer Network Clinical Groups and Responsibilities for Peer Review, as proposed by the South West Strategic Clinical Network (SWSCN) Cancer Network Manager, Jonathan Miller (14 th July 2014): Recurrent-Arrangements-v5-Final.pdf The NSSG meetings are also conducted in line with the Manual for Cancer Services, Brain and CNS Measures, Version Network Group Membership The Brain and CNS NSSG is held approximately every six months. In 2015, meetings were held on the 24th February 2015 and the 17 th November Attendance Spreadsheet The table below shows the core members of the NSSG and their attendance. All participants at MDTs are welcome to attend the NSSG meetings. Table 1.0 Brain and CNS NSSG core members and attendance 2015 Trust Name Title 24/02/ RUH Penny Kehagioglou Neuro Surgeon and Clinical Oncologist NBT David Porter Consultant Neuro-Surgeon NBT George Malcolm Consultant Neuro-Surgeon Version 1.0 5

6 NBT Richard Nelson Consultant Neuro-Surgeon NBT Venkat Iyer Consultant Neuro-Surgeon TST Christopher Price Consultant Neurologist TST Edward Fathers Consultant Neurologist GLOS Geraint Fuller Consultant Neurologist NBT Howard Faulkner Consultant Neurologist NBT James Stevens Consultant Neurologist NBT Kasia Sieradzan Consultant Neurologist TST Mark Fish Consultant Neurologist RUH Paul Lyons Consultant Neurologist NBT Amr Zakaria Mohamed Oncology Fellow NBT Will Singleton Neurosurgery Clinical Research Fellow UH Bristol Alison Cameron Consultant Clinical Oncologist UH Bristol Christopher Herbert Consultant Clinical Oncologist RUH Mark Beresford Consultant Clinical Oncologist GLOS Sam Guglani Consultant Clinical Oncologist GLOS Sean Elyan Consultant Clinical Oncologist NBT Kathreena Kurian Consultant Neuro Pathologist NBT Seth Love Consultant Neuro Pathologist NBT Marcus Bradley Consultant Radiologist UH Bristol Miranda Edens Clinical Radiotherapy Scientist UH Bristol Lorna Hawley ST3 Oncology NBT Danielle Kelly Skull Base Nurse Practitioner NBT Rosalind Taylor Skull Base Nurse Practitioner UH Bristol Nicki Crew Assistant Practitioner UH Bristol Louise Charlton Radiotherapy Physicist Version 1.0 6

7 UH Bristol Tanya McGreene Therapy Radiographer NBT Lauren Christiansen Senior Occupational Therapist NBT Helen Hodgeson Epilepsy Specialist / Sapphire Nurse NBT Helen Spear Macmillan Neuro oncology Speech and Language Therapist GLOS Anita Ashton Neuro-Oncology Clinical Nurse Specialist NBT Belinda Coghlan Neuro-Oncology Clinical Nurse Specialist UH Bristol Rachel Perrow Neuro-Oncology Clinical Nurse Specialist YDH Sarah Levy Neuro-Oncology Clinical Nurse Specialist NBT Sheryll Bautista-Pike Neuro-Oncology Clinical Nurse Specialist NBT Lois Baldry Macmillan Neuro-Oncology Clinical Nurse Specialist N/A John Stuart User Representative NBT Andrew Filby Neuro-Oncology MDT Coordinator NBT Caroline Fitz-Avon Neuro-Oncology MDT Coordinator NBT Khalia Lancaster-Thomas Assistant General Manager - Neurosurgery SWSCN Helen Dunderdale Cancer Network SSG Support Manager SWSCN Samantha Larsen Cancer Network SSG Support Administrator 2.4 Extended Members of the NSSG The table below notes the extended membership of the NSSG during 2015 and their attendance at the meetings. Table 1.1 Extended NSSG members and guests attendance Name Position 24/02/ /11/2015 Anthony Walsh Cancer Manager Maxine Taylor Senior Research Delivery Manager Carol Chapman Lead Cancer Nurse Version 1.0 7

8 Catherine Carpenter-Clawson Cancer Manager Catherine Donnelly Daniel Whelan Veronique Poirier Senior Analyst Somerset Cancer Register Data Analyst Somerset Cancer Register Principle Analyst - NCIN Helen Bulbek Brainstrust Khalia Lancaster- Thomas Pamela Gilvear Assistant General Manager Neurosurgery Brain Tumour Support Tessa Watson Brainstrust Rosemary Wormington Sue Wreglesworth Brain Tumour Support The Brain Tumour Charity Tina Mitchell- Skinner Brain Tumour Support 2.5 NSSG Quoracy The NSSG meetings held on the 24 th February 2015 and the 17 th November 2015 were not considered quorate, as clinical representatives from each Trust within the region had yet to be identified. The information from each meeting was distributed and the opportunity to participate in the discussion after the meeting was given to all of the core members. Version 1.0 8

9 Table 1.2. Attendance by Trust TRUSTS/OTHER Brain & CNS Attendance 24/02/2015 Brain & CNS Attendance 17/11/2015 UH Bristol 0 0 TST 0 0 NBT 9 8 RUH 0 0 WHAT 0 0 YDH 1 1 GLOS 0 1 Administration 2 1 User Representatives 1 0 Extended membership 8 7 Total Brain & CNS Attendance 24/02/2015 UH Bristol TST NBT RUH WAHT YDH Gloucestershire Administration User Representatives Extended Membership Version 1.0 9

10 Brain & CNS Attendance 17/11/2015 UH Bristol TST NBT RUH WHAT YDH GLOS Administration User Representatives 3. Service Development (measure 14-1C-105k) 3.1 Implementation of the National Cancer Survivorship Initiative The Brain and CNS NSSG has agreed to conduct a review of patient follow up systems in line with the practices recommended by the National Cancer Survivorship Initiative. Due to the ever increasing population of patients living with and beyond cancer, the current follow up systems are not sustainable, therefore new follow up methods need to be established to provide the support that patients require to lead as healthy and active a life as possible, for as long as possible 1. The Brain and CNS NSSG will work to ensure that all patients have access to the recommended Recovery Package. The Recovery Package consists of holistic needs assessments, treatment summaries and patient education and support events. The Brain and CNS NSSG will also develop risk stratified pathways of post treatment management, promote physical activity and seek to improve management of the consequences of treatment. 3.2 The service development function of the NSSG meeting The NSSG meeting will have an educational function, review major service developments on a regular basis, and escalate operational issues to the Cancer Operational Group and funding issues to the Clinical Commissioning Groups. 4. Chemotherapy Treatment Algorithms (measure 14-1C-108k) An agreed list of acceptable chemotherapy treatment algorithms is reviewed bi-annually and is available to view on the SWSCN website here. 1 Version

11 Any treatment algorithms that require updating are to be listed in the NSSG work programme. 5. Patient Experience and Feedback (measure 14-1C-116k) 5.1 User involvement The NSSG has a user representative member who is invited to contribute opinions about the Brain and CNS service at the NSSG meetings. The NHS employed member of the NSSG nominated as having specific responsibility for users issues, and information for patients and carers, is the Cancer Network NSSG Support Manager. The NSSG actively seeks to recruit further user representatives. 5.2 Feedback from the National Cancer Patient Experience Survey The results from the National Cancer Patient Experience Survey are included as a recurring agenda item at the NSSG meetings. The results are examined by looking at Trust level best practice to be shared, Trust / network level priorities identified for pathway improvements, and the actions required to address identified priorities. The results from the 2015 analysis are within the notes on the SWSCN website here. 6. Clinical Outcome Indicators and Audits (measure 14-1C-117k) The NSSG aims to regularly review the data from each MDT s clinical outcomes, quality indicators and audits. At least one network audit will be performed each year. The results of this are presented at the NSSG meetings and distributed electronically to the group. 6.1 The network audit for 2015 An audit of MDT activity in relation to the 2WW referrals was conducted. The majority of patients referred by the 2WW process are seen within two weeks of referral. The vast majority of patients diagnosed with Brain and CNS cancer were not identified via the 2WW referral service, and many inappropriate 2WW referrals were currently being received. The action plan from these results is to modify the referral process to improve MDT capacity and ensure that relevant patients are discussed. 6.2 The network audit for 2016 The audit for the next year will look at the different effects of the various treatments available for frontal lobe tumours, to assess if one has more side effects than others in relation to increased personality changes, as there is a feeling that agitation, combative behaviour and suicidal ideation may be more prevalent with some treatments. This will aim to establish if these changes are tumour or drug related and to seek the most appropriate treatment. The audit will be conducted by the neuro-oncology CNSs in collaboration with the epilepsy CNSs from Spring 2016, aiming to present the findings at the Autumn 2016 SSG meeting. Version

12 6.3 Clinical quality indicators Patient outcomes need to be measured by using an appropriate Quality of Life measurement tool in order to understand the disease burden caused by brain tumours and brain tumour treatments. This would help address any significant personal and economic impacts by providing the necessary support at the earliest possible stage. The Functional Assessment of Cancer Therapy-Brain (FACT-BR) tool was considered the most valid to use. This will be piloted in the beginning of 2016 and the results will be presented at the next SSG meeting in March Clinical Trials and Research Activity (measure 14-1C-118k) 7.1 Discussion of Clinical Trials Members of the NSSG discuss each MDT s report on clinical research trials within every NSSG meeting. A list of open trials on the Brain and CNS NIHR portfolio, and any potential new trials, is supplied for each NSSG meeting by the West of England Clinical Research Network (CRN) Cancer Research Delivery Manager. Due to the CRN s mapping with the Academic Health Science Networks, Taunton and Yeovil are in South West Peninsula CRN. The Cancer Research Delivery Manager from the Peninsula CRN will provide the NSSG with the data for these Trusts. Potential new trials to open and actions to improve recruitment will be documented in the NSSG work programme. The NHS staff member nominated as the research lead for the NSSG is Dr Christopher Herbert. 7.2 Recruitment Action Plan The trials available in each Trust will be updated on the South West Strategic Clinical Network website at regular intervals so that the NSSG members can ensure, wherever possible, that clinical research trials are accessible to all eligible Brain and CNS cancer patients. There were very few surgical trials at the moment, the majority being oncology based. The CRN is working with local Research and Development departments to ensure that there is a balanced portfolio of surgical, rare cancers, children and young adult, and radiotherapy trials available. Approximately 23% of patients have been recruited to trials in the South West during the last financial year, exceeding the recruitment target of 20% for all cancer incidences. Recruitment numbers this year can be seen within the presentation. There are two new studies currently in set up: HIPPO and SIOP Ependymoma II, as detailed in the presentation. The National Cancer Research Institute Studies Group (NCIR) portfolio maps provide information on upcoming trials, which can be viewed via the following link: Current Clinical Trials Activity A summary of the clinical trial recruitment into National Institute of Health Research trials during 2015 can be found on the SWSCN website here. 7.4 Recruitment of Teenage and Young Adults (TYA) There were no TYA patients recruited to NIHR Brain and CNS studies in END- Version