Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services Haematology Cancer Network Site Specific Group Annual Report 2014 Version 1.0 1
This annual report was prepared by: Sophie Otton Chair of the SWAG Haematology SSG Helen Dunderdale SWAG Cancer Network SSG Support Manager This annual report has been agreed by: Name Position Organisation Date Agreed Christopher Knechtli Haematologist Royal United Hospital Bath Deepak Mannari Haematologist Taunton and Somerset May 2015 May 2015 & Yeovil Hospitals Foundation Stephen Robinson Haematologist Hospitals Bristol May 2015 Anna Morris Haematologist Weston Area Health May 2015 Version 1.0 2
Haematology N Contents Section Contents Measures Page 1 Overview, achievements and challenges 1.1 Overview of report 4 1.2 Overview of service 4 1.3 Achievements and key service 4 improvements over the past 12 months 1.4 Challenges for the SSG moving 5 forward 2 The Network Group 13-1C-103h Meeting and membership 2.1 Chair of the SSG 5 2.2 Network Group Membership 13-1C-102h 5 2.3 Attendance Spreadsheet 5 2.4 Extended Members of the SSG 7 2.5 Network Group Quoracy 7 3 Service Development 13-1C-104h 3.1 The National Cancer 8 Survivorship Initiative 3.2 The function of the SSG 8 meeting 4 Chemotherapy Treatment 13-1C-108h 8 Algorithms 5 Patient Experience 13-1C-111h 5.1 User Involvement 8 5.2 The National Cancer Experience Survey 9 6 Clinical Outcome Indicators and Audits 13-1C-112h 6.1 Network Audits 10 6.2 Clinical quality indicators 10 7 Research Version 1.0 3
7.1 Discussion of Clinical Trials 13-1C-113h 10 7.2 Recruitment Action Plan 10 7.3 Current Clinical Trials Activity 11 7.4 Recruitment of Teenagers and Young Adults 14 1. Overview, achievements and challenges 1.1 Overview of report This report reflects the period of activity for the SSG from 1 st January 2014 to 31 st December 2014. It contains a summary of the activity of the Haematology SSG for this period 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 SSG: the Constitution, Clinical Guidelines and the Work Programme. The Haematology SSG Constitution provides an overview of how the SSG operates, outlining the general working processes of the SSG, the patient referral pathways and the guidelines to which the SSG adheres. The investigational and 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 SSG over the next financial year (and beyond where appropriate). All four documents should be reviewed together to give a full overview of the SSG, its performance and future plans. 1.2 Overview of service The Haematology site-specific group aims to oversee, support and bring together the viewpoints of all the multi-disciplinary teams working within the haematological 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 SSG also serves to ensure implementation of NICE guidelines for investigation and treatment of Haematological cancers and to provide guidelines for supportive care. The group undertakes the process of protocol development and review. It supports a programme of education on key developments in the field of Haematological 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 improvement of the Haematology SSG over the past 12 months (during 2014). The SSG has undergone reconfiguration in line with the national cancer clinical networks, incorporating Gloucester and Cheltenham NHS. The SSG has undertaken a major review of chemotherapy protocols in 2014. The SSG has appointed a new patient representative. The SSG has engaged in an educational programme. The SSG has conducted a clinical audit. Version 1.0 4
1.4 Challenges for the SSG moving forward The key challenges for the Haematology SSG moving forward have been highlighted below. Ensuring the SWAG website is fully functional, with all currently used chemotherapy protocols available. Ensuring implementation of NICE guidance on investigational pathways. Ensuring that all s in the Network regularly contribute to the educational and audit programmes. Continuing to expand and support the clinical trials programme with both late and early phase trials. 2. The NSSG Meeting and Membership (measure 13-1C-102h) 2.1 Chair of the SSG Dr Sophie Otton has been the Chair of the Haematology SSG since 2012. A list of responsibilities for the SSG, for the Chair, and other members of the SSG, plus the SSG 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 (SCRN) Cancer Network Manager, Jonathan Miller (14 th July 2014): http://www.swscn.org.uk/wp/wp-content/uploads/2014/08/cancer-network-clinical-groups- Recurrent-Arrangements-v5-Final.pdf The NSSG meetings are also conducted in line with the Manual for Cancer Services, Haematology Measures (Version 1.0): 2.2 Network Group Membership (measure 13-1C-103h) The Haematology SSG is held approximately every five months. In 2014, meetings were held on the 10 th June 2014 and the 14 th October 2014. The table below shows the core members of the SSG and their attendance. All participants at MDTs are welcome to attend the SSG meetings. Table 1.0 Haematology SSG core members and attendance Name Position 10/06/2014 14/10/2014 Sophie Otton Deepak Mannari Haematologist Haematologist North Bristol (NBT) Taunton and Somerset NHS Foundation (TST) & YDH Version 1.0 5
Christopher Knechtli Stephen Robinson Anna Morris Jenny Bird Matthew Beasley Samreen Siddiq Lisa Lowry James Griffin Sally Moore Julian Kabala Becky Bagnall Georgina Holmes Andrea Preston Gwenda Morgan Graeme Butters Haematologist Haematologist Haematologist Haematologist and Clinical Director of Oncology Oncologist Haematologist Haematologist / Research Lead Haematologist Haematologist / Research Lead Radiologist Consulant Pharmacist Pharmacist Pharmacist Clinical Nurse Specialist Clinical Nurse Specialist Royal United Hospitals Bath (RUH) Weston Area Health NHS (WAHT) North Bristol Royal United Hospitals Bath (RUH) North Bristol (NBT) Weston Area Health NHS (WAHT) North Bristol (NBT) Version 1.0 6
Teresa Veale Theresa Peters Clinical Nurse Specialist Macmillan Haematology Nurse Yeovil District Hospital NHS Foundation (YDH) Victor Barley User Representative Maxine Taylor Lynne Pearson Catherine Neck Helen Dunderdale Samantha Larsen Senior Research Delivery Manager / Organisational Development Lead Cancer Manager Macmillan Survivorship Lead Cancer Network SSG Support Manager / user representative support SSG Support Administrator Clinical Research Network - West of England (CRN) Taunton and Somerset NHS Foundation (TST) North Bristol (NBT) South West Strategic Clinical Network (SWSCN) South West Strategic Clinical Network (SWSCN) 2.3 Extended Members of the SSG The table below notes the extended membership of the SSG during 2014 and their attendance at the meetings. Table 1.1 Extended SSG members and their attendance at the SSGs held on the 14 th October 2014. Name Role Lynn Pearson Catherine Neck David Dutton Cancer Manager Macmillan Survivorship Lead Specialist Registrar in Haematology 2.4 SSG Quoracy The SSG meeting held on the 10 th June 2014 did not have representation from all required specialities. The notes were distributed to the core SSG members who were unable to attend. This meeting was held prior to the formation of the SWAG cancer network SSG support service, and was organised in the absence of any administrative support. The meeting held on the 14 th October 2014 was considered quorate. Although imaging and pathology specialists were unable to attend, the information from the meeting was distributed and Version 1.0 7
the opportunity to participate in the discussion after the meeting was given to all of the core members who were unable to attend. 3. Service Development (measure 13-1C-104h) 3.1 Implementation of the National Cancer Survivorship Initiative The Haematology SSG 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 haematology 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 haematology 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 SSG meeting The SSG 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 13-1C-108h) An agreed list of acceptable chemotherapy treatment algorithms is reviewed bi-annually and available to view on the SWSCN website. Any treatment algorithms that require updating are listed in the NSSG work programme. 5. Patient Experience and Feedback (measure 13-1C-111h) 5.1 User involvement The NSSG has a user representative member who contributes opinions about the haematology service at the NSSG meetings. The user representative has not identified any areas for improvements to the patient experience as of yet, and has stated at the SSG meeting in October 2014 that the quality of care he has received has been satisfactory. 1 http://www.ncsi.org.uk/ Version 1.0 8
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 SSG 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 Patient Experience Survey are included as a recurring agenda item at the SSG meetings. The results are examined by looking at level best practice to be shared, / network level priorities identified for pathway improvements, and the actions required to address identified priorities. The feedback from the 2014 survey identified the following priorities: Increase the information given to patients about clinical trials Increase the information given to patients on the financial assistance available Increase awareness of who the patient s keyworker is The priorities identified resulted in the following actions: Research awareness leaflets added to patient information packs Citizen Advice financial advice form included in patient information packs Posters with contact details of the Clinical Nurse Specialists (Keyworkers) displayed in clinics The Haematology SSG identified the key priority for improving patient experience as the need to increase the number of clinical nurse specialists within the s. 6. Clinical Outcome Indicators and Audits (measure 13-1C-112h) The NSSG 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 2014 Audit of Myeloma data collection. All five s were invited to participate; returns were available as a separate attachment. The principal learning point was thepoor return of proformas with two s submitting nil returns. Returns documented correctly (64%) showed evidence of documentation of haemoglobin, creatinine, calcium, paraprotein and/or serum free light chain levels. It was also noted that 72% of the proformas demonstrated documented bone marrow aspirate results. Improvements, suggested in discussion after presentation of the audit, were to continue to use the staging systems to determine the choice of therapy for individual patients. FISH analysis of marrow material on diagnosis remains controversial. There is still not international consensus as to the optimal treatment approach for different risk groups and therefore application of cytogenetics to initial Version 1.0 9
treatment decisions remains quite variable. It was noted that when clinical trials were offered by individual s there was a high uptake, but it was also noted that co-morbidities were clearly recorded on proforma information and this data is difficult to re-extract in a snapshot. A re-audit was suggested after a period of 12 months 6.2 The network audit for 2015 Dosing of Chemotherapy in Obese Adult Patients with Cancer a survey of current clinical practice The audit was initially discussed at the meeting on the 14 th October 2014. The first set of results was presented on the 11 th March 2015. it is planned for the next set of results to be discussed in October 2015. 6.3 Clinical quality indicators 10/06/2014. A list of clinical guidelines for updating was circulated. Cancer outcomes and datasets were discussed relating to comparison of s performance. 14/10/2014. There was extensive discussion of clinical practice. Many of the guidelines circulated for updating were completed in this meeting. Methods to improve cancer waiting times were discussed. 7. Clinical Trials and Research Activity (measure 13-1C-113h) 7.1 Discussion of clinical trials Members of the SSG discuss each MDT s report on clinical research trials within every SSG meeting. A list of all of the open trials on the haematology NIHR portfolio, and potential new trials, is brought to each SSG 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 s. Potential new trials to open and actions to improve recruitment will be documented in the NSSG work programme. The NHS staff members nominated as the research leads for the NSSG are Lisa Lowry and Sally Moore. The SSG are currently exceeding their recruitment targets for the period April 2015 7.2 Recruitment Action Plan Lisa Lowry and Sally Moore have agreed to jointly undertake the roles of research lead for the SSG and subspecialty lead for the West of England Clinical Research Network. They will form links with Version 1.0 10
the National studies groups, map trials, and increase access to research across the region by cross referring and challenging situations where this is not occurring. The trials available in each 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 haematology oncology patients. At the next SSG meeting, the research report will examine recruitment into individual trials in more detail in order to identify methods to boost recruitment. Potential trials to open that are in set-up on the NIHR portfolio will be discussed at the next SSG meeting on the 14 th July 205. These can be viewed via the following link: http://csg.ncri.org.uk/portfolio-maps Other actions generated from the SSG meetings in 2014 are to look into how funding can be sourced for AML18, and to improve the process of expressing an interest in potential commercial trials. 7.3 Clinical Trials Activity The following tables were compiled by Maxine Taylor, Senior Research Delivery Manager for the West of England Clinical Research Network. They provide a summary of the clinical trial recruitment into National Institute of Health Research trials during April 2014 January 2015. Version 1.0 11
Table 2 Recruitment to Haematology Oncology studies by study design type Table 2.1 Recruitment to Lymphoma studies by study design type Table 3 Lymphoma and Haematology oncology portfolio Version 1.0 12
Lymphoma & Haematology Oncology portfolio for CRN - West of England + Taunton & Yeovil - SWAG for year April 2014 to end of January 2015 Sum of Count Column Labels Row Labels Gloucestershire Hospitals NHS Foundation North Bristol NHS Royal United Hospital Bath NHS Taunton and Somerset NHS Foundation Hospitals Bristol NHS Foundation Weston Area Health NHS Grand Total AML 17 9 5 5 6 29 FIGARO 2 2 LI-1 2 2 5 MAJIC 1 1 3 MaPLe: Molecular profiling for lymphoma 3 MDSBio 21 11 29 5 111 MUK five 4 4 MYELOMA XI 9 12 13 34 NCRN261 - Herpes Zoster in haematopoietic stem cell transplant (HCT) recipients 2 NCRN480 STRATUSpomalidomide+dexa in refrectory/relapsed myeloma 1 1 NCRN549 - Ruxolitinib in Myelofibrosis 4 7 11 PACIFICO 2 1 3 ProT4 (Prophylactic Transfer of CD4 Lymphocytes) 1 1 Version 1.0 13
6.4 Teenage and Young Adults (TYA) Five TYA patients were recruited to Haematology Trials in 2014. -END- Version 1.0 14