LUNG CANCER AND MESOTHELIOMA NETWORK SITE SPECIFIC GROUP ANNUAL REPORT 2009 September 2010

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1 East Midlands Cancer Network LUNG CANCER AND MESOTHELIOMA NETWORK SITE SPECIFIC GROUP ANNUAL REPORT 2009 September 2010 Dr Giles Cox Consultant Physician in Respiratory Medicine, Sherwood Forest NHS FT Chair of East Midlands Lung Cancer and Mesothelioma NSSG 14th May 2010 Mr T Rideout Chairperson East Midlands Cancer Network Strategic Board 10 th August 2010 EMCN Lung Cancer and Mesothelioma Cancer NSSG membership agreed 14 th May 2010 Dr Vaughan Keeley, NCRN Clinical Lead Derby-Burton Dr Steve Nicholson, NCRN Clinical Lead - LNR Professor David Walker, NCRN Clinical Lead Mid-Trent 10 th August 2010 at EMCN Strategic Board Status: FINAL Publication Date: May 2010 Expiry Date: May 2011 EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 1/55

2 CONTENTS Page 1.0 Foreword Overview of Achievements and Challenges NSSG Membership, Meetings Schedule and Attendance 3.1 User Involvement 3.2 Clinical Nurse Specialist Subgroup Annual Review for East Midlands Lung NSSG Chairperson Activity Overview and Waiting Times Network Audit Research Patient and Carer Feedback and Involvement 8.1 East Midlands Patient and Carer Feedback and Involvement 8.2 Advanced Communication Skills Training 8.3 Patient Information Review of the Peer Review Remedial Actions and IOG Compliance Service Development Plan End of Life Survival and Incidence Data from Registry National Quality Issues Work Plan Review 15.0 Agreements 19 Appendix A EMCN Educational Programme 13 November Appendix B EMCN Educational Programme 14 May Appendix C CNS Group Scoping Exercise 22 Appendix D - East Midlands Lung NSSG Chairperson's Review 27 Appendix E - Waiting Times 31 Appendix F - Fatigue, Anxiety and Breathlessness Clinic 34 Appendix G - East Midlands Lung NSSG Trials Portfolio & MDT Actions 35 Appendix H Validated Pathways 49 Appendix I Survival and Incidence Data from Registry 52 EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 2/55

3 Page Reference Number For Peer Review Measures Measure Page Number 08-1A-201c C-101c C-102c C-109c C-110c C-111c C-112c C-113c 16 EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 3/55

4 NHS East Midlands * NATCANSAT has not yet produced an East Midlands Cancer Network (EMCN) Map. The EMCN is not fully co-terminous with NHS East Midlands as it does not cover north Lincolnshire or Bassetlaw. However the map does serve to illustrate the size and complexity of EMCN OXFORD Oxford Radcliffe Hospital EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 4/55

5 1.0 Foreword by NSSG Chair The East Midlands Cancer Network Lung and Mesothelioma NSSG has only been up and running for 12 months but, in that time, has become a well established Network group with strong collaborative working across the constituent MDTs. This resulted in a positive and fully compliant externally validated peer assessment in This will provide a strong platform for the full review visit in January The East Midlands has drawn on all the enthusiasm and expertise of all specialities in order to speed up diagnosis and achieve best patient outcomes. The NSSG has a very full and demanding work programme and has made much progress in addressing this. This has been helped by forming strong, proactive subgroups including:- A CNS Group Audit Group Mesothelioma Planning Group There remain some very real challenges and the next year will see further financial restraints and reliance on improvement in current services will be of paramount importance. There were concerns about moving to an East Midlands Cancer Network but the advantages of doing so are now becoming evident. The timetable for 2010/2011 is full and I look forward to being a part of the further development of the East Midlands Cancer Network Lung and Mesothelioma NSSG. Dr Giles Cox, Consultant Respiratory Physician, Kings Mill Hospital And Chairperson, East Midlands Cancer Network Lung and Mesothelioma NSSG 2.0 Overview of Achievements and Challenges: 2.1 East Midlands Lung Cancer and Mesothelioma NSSG Achievement and Challenges: Achievements: Well established East Midlands Lung and Mesothelioma NSSG which has had a successful year with a high level of attendance from colleagues across all parts of the East Midlands with a strong commitment to work collaboratively to improve patient care. Robust Clinical Guidelines updated. Clinical Nurse Specialist subgroup developed and the first meeting took place in February The forum has now set up a structure for future meetings. Audit Subgroup Mesothelioma Planning Group Oncology Subgroup EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 5/55

6 Two Educational Meetings undertaken this year (programmes attached as appendices o Friday 13 th November 2009 Appendix A o Friday 14 th May 2010 Appendix B Challenges: Data management and audit support remain issues across the Trusts Develop treatment specific guidelines from the Mesothelioma Planning Group Achieve equity of access of all imaging and staging procedures Ensure all MDT core members attend ACST courses To develop within region, an NHS molecular laboratory for testing EGFR mutation 3.0 NSSG Membership, Meetings Schedule and Attendance (Demonstrating compliance with Measures 08-1A-201c and 08-1C-101c) (Minutes of as supporting evidence) The NSSG Meeting Schedule for July 2010 to July 2011 was agreed as: East Midlands Lung Cancer and Mesothelioma NSSG Meeting Calendar East Midlands NSSG AGM Meeting 14 May 2010 With Educational Meeting With Mesothelioma Planning Meeting East Midlands NSSG 5 November 2010 With Audit Subgroup With Educational Meeting With Mesothelioma Planning Meeting East Midlands NSSG - AGM May 2011 final date to be decided on 5 th With Educational Meeting November 2010 The designated administrative support for the East Midland Lung Cancer and Mesothelioma NSSG is as follows: Mrs Beverley Dyson, Team Administrator, East Midlands Cancer Network Janet Duffin, Service Development Manager, East Midlands Cancer Network Dr Elspeth Macdonald, Director, East Midlands Cancer Network These colleagues will work with the chair to organise the support for the meetings including venues, papers, minutes and other requirements identified by the NSSG Chair. In reviewing the required membership it was agreed that the core membership would be as described in the Manual of Cancer Measures, namely: MDT Lead from each Network MDT At least one nurse member of an MDT in the network A Service Improvement representative and NSSG lead EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 6/55

7 Three User representatives, if possible or an agreed mechanism for obtaining user input NHS member responsible for users issues and patient/carer information (CNS) Member of the NSSG responsible for trials recruitment Named administrative/secretarial support (as documented above) The core membership for the East Midlands Lung Cancer and Mesothelioma NSSG is compliant with the requirements of the guidance. The core members are marked in bold**. In recognition of the potential size of the East Midlands NSSG and to avoid undue impact on clinical time yet maintain strong input, groups marked with * have electronic subgroups. The NSSG is deemed quorate if a member from each Network and subgroup is in attendance. However, all individual members are welcome to attend. East Midlands Lung NSSG Membership 2010 MDT Lead Name Designation Present Nottingham Dr David Baldwin** Consultant Respiratory Physician, NUH University Hospital MDT Lead Grantham Hospital MDT Lead Dr James Campbell ** Consultant Respiratory Physician, Grantham Lincoln County MDT Pilgrim Hospital Boston MDT Lead Sherwood Hospital MDT Lead Northampton General Hospital MDT Lead Leicester MDT Lead (Leicester Mesothelioma Lead) Kettering General Hospital Burton MDT Lead Derby MDT Lead *Imaging Representation Dr Kate Scheele** Consultant Respiratory Physician, LCH Dr David Clifton ** Dr Giles Cox** Dr Josephine Ojoo ** Consultant Respiratory Physician, PHB Consultant Chest Physician, KMH EMCN Lung NSSG Chair Consultant Respiratory Physician, NGH Dr Jonathan Bennett** Consultant Respiratory Physician, GGH Dr Raja Reddy** Consultant Respiratory Physician, KGH Dr Paul Beckett ** Consultant Respiratory Physician, QHB Dr R Aldridge** Consultant Respiratory Physician, RDH Dr J Entwisle Dr R Jones Dr D Walter Dr K Pointon Consultant Radiologist, UHL Consultant Radiologist, NGH Consultant Radiologist, KGH Consultant Radiologist, NUH EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 7/55

8 East Midlands Lung NSSG Membership 2010 MDT Lead Name Designation Present Dr C Kennedy Dr M Aslam Dr G Pollock Consultant Radiologist, NUH Consultant Radiologist, ULH Consultant Radiologist, RDH *Pathology Representation Thoracic Surgery Representation *Oncology Representation *Clinical Nurse Specialist Representation *Palliative Care Representation Service Improvement Dr N Gorgees Dr C Richards Dr N Mayer Dr S Muller Dr J Nottingham Dr I Soomro Dr T Jackson Mr D Waller Mr A Martin-Ucar Mr J Duffy Mr A Majewski Dr P Camilleri Dr G Thomas Dr H El Deeb Dr C Esler Dr S Ahmed Dr S Nicholson Dr J Baumohl Dr K Foweraker Dr I Hennig Dr S Morgan Dr A Chetiyawardana Dr M Kumar Ms N Cornelius Dr E Mak Dr A Chaudhuri Ms S Avery Ms J Brunskill Ms L Darlison** Ms L Holland Ms K Warner Ms L Wells Ms K Brady Ms S Hummerston Ms J Morley Ms S Saha Ms D Skinner Ms G Wibberley Ms J Morris Ms S Rowe Ms L Parker Dr E Waterhouse Dr V Cosby Mr B Brown Ms H Bruce Ms C Crampton Dr J Hocknell Mrs Trudi Cameron** Consultant Histopathologist, KGH Consultant Histopathologist, UHL Consultant Histopathologist, UHL Consultant Histopathologist, UHL Consultant Histopathologist, NGH Consultant Histopathologist, NUH Consultant Histopathologist, RDH Consultant Thoracic Surgeon UHL Consultant Thoracic Surgeon NUH Consultant Thoracic Surgeon, NUH Consultant Thoracic Surgeon, NUH Clinical Oncologist, KGH Consultant Oncologist, NGH Consultant Oncologist, UHL Consultant Oncologist, UHL (Trials) Consultant Oncologist, UHL Senior Lecturer in Medical Oncology, Leicester Consultant Oncologist, ULH Consultant Oncologist, NUH Consultant Oncologist, NUH Consultant Oncologist, NUH Consultant Oncologist, QHB Consultant Oncologist, RDH Consultant Radiographer, ULH Consultant Medical Oncologist, NGH Consultant Oncologist, ULH Thoracic Nurse Specialist, UHL Lung Cancer Nurse Specialist, UHL Consultant Nurse Specialist, UHL (Users/Carer Issues) Lung Cancer CNS, KGH Lung Nurse CNS, UHL Lung Cancer CNS, NGH Lung Cancer CNS, ULH Lung Cancer CNS, NUH Lung Cancer CNS, KMH Lung Cancer CNS, NUH Lung Cancer CNS, PHB Lung Cancer CNS, ULH Lung Cancer CNS, RDH Lung Cancer CNS, RDH Clinical Nurse Specialist KGH Consultant in Palliative Medicine, LOROS Consultant in Palliative Medicine, NUH Hospital Palliative Care Team Nurse, RDH Palliative Care CNS, QHB Palliative Care Nurse, QHB Consultant in Palliative Medicine, RDH East Midlands Cancer Network Service Improvement Lead EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 8/55

9 East Midlands Lung NSSG Membership 2010 MDT Lead Name Designation Present Lead Mrs C Tomlinson EMCN Local Improvement Lead Network Ms C Clarke EMCN Lead Pharmacists Pharmacy Link Primary Care Chair EMCN Primary Care Group Link Administrative Support *NCRN Manager Representation Mrs B Dyson** Ms J Duffin** Dr E Macdonald** Ms J Berridge Ms S Hare EMCN Team Administrator EMCN Service Development Manager EMCN Director NCRN Manager Mid Trent NCRN Manager Derby Burton Ms S Nicholson NCRN Manager LNR NCIN Link Dr M Peake NCIN Lead Clinician SCG Link Mr Jon Currington EMSCG Senior Strategy & Planning Manager *Physician Members Dr S Agrawal Dr B Richardson Dr A Sattar Dr N Ali Dr D Boldy Dr D Clifton Dr I Paterson Dr W Elston Dr G Lowery Dr G Mabeza Dr J Sheldon Dr S Mallik Dr U Nanda Mr C Whale Dr S Matusiewicz Consultant Respiratory Intensivist, UHL Consultant Respiratory Physician, NGH Consultant Respiratory Physician, KGH Consultant in Thoracic Medicine, KMH Consultant Physician, PHB Consultant Physician, PHB Consultant Physician, NUH Consultant Physician, RDH Consultant Physician, RDH Consultant Physician, RDH Consultant Physician, QHB Consultant Respiratory Physician, KGH Consultant Chest Physician, QHB Consultant Chest Physician, RDH Consultant Chest Physician, ULH Patient Ms V Phillips MacMillan Patient Information Facilitator Information Allied Health Ms L Elliot EMCN Allied Health Professional Professional Link Circulation for Information Trust Managers for Information Network Clinical Leads for Information Network Clinical Implementation Managers for Information Network Service Development Managers for Information Ms J Pipes Mrs C Greenfield Ms J Jan Mr G Pilkington Ms L Hitchins Ms F Gordon Ms J Harper Ms S Donelly Mr M Lamb Dr W Goddard Dr P Shaw Ms A Johnson Ms M Emery Ms N Geddes Ms A Sloman Cancer Centre Manager, ULHT Trust Cancer Manager, NUH Trust Lead Cancer Manager, SFHT Cancer Manager, DHFT Cancer Lead, BHFT General Manager, Cancer Services, UHL Lead Cancer Manager, KGH Cancer Centre Manager, NGH EMCN Mid Trent Lead Clinician EMCN Derby-Burton Lead Clinician EMCN LNR Lead Clinician EMCN CIM EMCN CIM EMCN Service Development Manager EMCN Service Development Manager EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 9/55

10 3.1 User Input into the East Midlands Cancer Network Lung NSSG Appreciating the size and complexity of the Network, the Network team wish to ensure that patient/carer representatives wanting to be involved in East Midlands Cancer Network Site Specific and Cross Cutting Groups feel confident and able to be active members of the group. Support for them to contribute effectively to discussions and inform the planning process for service delivery and evaluation is important. To explore this further a one day workshop supported by the EMCN and facilitated by Macmillan Cancer Support was held on the 10 March Invitations were sent out via the members of the three local partnership groups. The workshop was aimed at: All existing and new patient and carer representatives and those who have expressed a serious interest in becoming a representative on an East Midlands NSSG or Generic Group Chairs of NSSGs and Generic Groups Clinical Nurse Specialists Members of the Network Team The learning objectives of the day were to: Understand the purpose of NSSGS and Cross Cutting Groups Understand the purpose and expectations of the patient/carer representative and how they contribute to the working of the group Understand the role of other NSSG and Generic Group members Understand how effective patient/carer contribution to the meetings can be facilitated Generate ideas for further training and methods of preparing and supporting patient/carer representatives on all EMCN Groups. As a result of this initial training initiative patient/carer representation has been strengthened with several additional patients/carers asking to become members of an EMCN NSSG. This has resulted in the majority of EMCN NSSGs having at least one patient/carer representative, with a number having up to 3 representatives ensuring input from each local area. Unfortunately, despite this initiative no user representation has been secured for the NSSG. Options to recruit carers will be explored. Clear plans have also been devised to enable ongoing recruitment and support for patient/carer representatives on to EMCN Groups. This includes the opportunity to attend as an observer, the development of a buddying system and plans for more formal training as and when required. Robust user input to the East Midlands Lung and Mesothelioma Cancer NSSG is also secured through the East Midlands Strategic Partnership Group. 3.2 Clinical Nurse Specialist Subgroup The Clinical Nurse Specialists have formed a subgroup of the EMCN Lung and Mesothelioma NSSG and met twice this year Wednesday 10 th February 2010 and Wednesday 5 th May EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 10/55

11 A scoping exercise to define the role, funding and workload of the lung CNSs across the Network was undertaken. This is attached as Appendix C. The report seeks to provide initial insight into the characteristics of the EMCN Lung and Mesothelioma CNS Group. The priorities of the group are:- Establishing a network wide nursing workload dataset Developing a network standard for a bereavement service Members of the EMCN Lung CNS Group are also involved in the National Lung Cancer Forum for Nurses. Several good practice exemplars from the local teams were included in the 2009 Good Practice Guide. 4.0 Annual Review for East Midlands Lung Cancer and Mesothelioma NSSG Chairperson (Demonstrating compliance with Measure 08-1C-102c) The East Midlands Lung Cancer and Mesothelioma NSSG Chairperson, Dr Giles Cox had a review meeting with Mr Martin Lamb, the East Midlands Lead Clinician and also representing the EMCN Strategic Board on 03 March The confirmation and detail of this meeting is included in Appendix D. 5.0 Activity Overview/Waiting Times The Waiting Times Data were discussed by the NSSG at the meeting on 14 May 2010 in the presence of representatives of the MDTs East Midlands wide. A full summary of the data is included in Appendix E. Each MDT has confirmed to the Network Service Improvement Lead or the Local Improvement Lead the actions being taken to reduce breaches and the support required for redesign. The MDT discussion is not exclusively new patients but increasingly reflects the discussion of patients requiring second and subsequent treatment as part of Going Further on Cancer Waits. The Service Improvement Team has worked with the individual trusts to ensure that there was robust compliance with GFoCWs. 5.1 Service Improvement Update Royal Derby Hospitals Foundation Trust: Straight to test The EMCN SI Team supported the lung team to complete the appropriate documents to enable the CNS to request CT scans with contrast medium. Previously this had to be agreed by the Consultant. Prior to this change this process step was recognised as a delay in the pathway. Stringent guidelines enable the right patients to be selected for straight to test. The CNSs completed the clinical pathway element and the request component is being reviewed to help streamline the 2ww pathway. Burton Hospitals Foundation Trust: Fatigue and Breathlessness (FAB) Project The FAB programme aims to reduce emergency admissions for lung cancer patients due to breathing problems. The programme aims to empower patients and carers to EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 11/55

12 take control of their symptoms and manage their own health needs. A series of four programmes has been funded through the EMCN Service Improvement Team. A full resume of the project is included as Appendix F. Derby & Burton Hospitals MDT Review: Both sites have taken part in a review of their MDTs. An action plan has been provided to the Cancer Centre Managers to work through with the relevant teams. This will smooth transition points and reduce delays. University Hospitals of Leicester, Kettering and Northampton General Hospital: All lung cancer and mesothelioma clinical pathways are being reviewed. Nottingham University Hospitals NHS Trust: Project underway to analyse the last 20 breaches for lung patients started from 1 st May and working backwards. These data will be reviewed and any areas of concern highlighted to the trust for further action. Sherwood Forest Hospitals NHS Trust: The MDT is discussing whether to change to CT scan prior to clinic. An electronic bronchoscopy reporting system has been developed. 6.0 Network Audit Demonstrating compliance with Measure 08-1C-110c Demonstrating compliance with Measure 08-1C-109c The East Midlands Lung Cancer and Mesothelioma NSSG Audit Audit of patients with Stage I and II NSCLC An audit of the reasons, including co-morbidity which have excluded patients with Stage I or Stage II NSCLC from radical treatment. A two strand approach was agreed:- Retrospective data from 2007 (including FEV1, documented refusal, co-morbidity etc) Prospective data from 2010 The analysis of the audit will be presented at the Educational Meeting on 5 November (See minutes of the meeting in supporting evidence folder). 6.2 EGFR Mutation Audit An audit to ascertain the gene mutation rate in the East Midlands by using EGFR genetic testing on patients with NSCLC. This was a three month audit where all patients diagnosed with NSCLC were entered on histological or cytological diagnosis. The full results of the EGFR Audit will be presented at the Educational Meeting on 5 November Data to date suggest a low pick up and queries on the technical quality of the kits. 6.3 East Midlands Lung Cancer and Mesothelioma NSSG - National Audit - LUCADA There has been good submission of data for LUCADA with all areas in the Network participating. With national completeness very high for all key fields it is likely that meaningful national analyses could start to be made. EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 12/55

13 Dr Paul Beckett presented the findings of the LUCADA Audit at the Educational Meeting held on 14 May Figures for the East Midlands Cancer Network on the following were presented:- Case Ascertainment Stage/PS Completeness Numbers of Patients Discussed at MDT Histological Confirmation Anti-Cancer Treatment Resection for NSCLC Chemotherapy in SCLC Median Survival The analysis showed that data input was variable from the Trusts across the East Midlands. The following issues were discussed by the NSSG: Variations in raw measures of process and outcome Variation that persist after case-mix adjustment Case-mix adjustment does not radically influence the variations Does active investigation/treatment translate into improved (median) survival? The following were the questions the members took away to consider:- What are the factors driving variation in practice? What are the factors driving variation in survival? How can we capture co-morbidity and what is its influence? Does analysis of longer-term survival strengthen links between practice and outcome? The LUCADA Data will be a key topic at the NSSG Education Day. 6.4 East Midlands Lung Cancer and Mesothelioma NSSG Audit Proposals for 2010/1011 At the East Midlands Lung Cancer and Mesothelioma NSSG meeting on 14 th May 2010 the East Midlands wide audit project for was agreed as: To measure PET turnaround times from request to result available and MDT discussion The proposal is for the audit to be undertaken from September 2010 to November 2010 at all sites in the East Midlands Cancer Network. The MDT leads from each site will be asked to collect the date, this will be discussed at the Audit Subgroup meeting on 5 th November 2010, and presented at the May 2011 Educational meeting. This audit projects were confirmed with the East Midlands Cancer Network Board on the 10 th August EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 13/55

14 7 EM Lung Cancer and Mesothelioma NSSG - Research (Demonstrating compliance with Measure 08-1C-111c and 08-1C-112c) The NCRN trials portfolio is discussed at each meeting of the NSSG. Each MDT has been contacted to discuss issues impeding recruitment, although there are not many lung cancer or Mesothelioma trials open in the East Midlands Cancer Network. The NCRN teams have proposed with the support of the EMCN Team that a brief outline of expected responsibilities for the MDT Research Leads be formally developed and agreed and this is ongoing. Trials Horizon Scanning is ongoing and co-ordinated by the Site Specific Oncologists, the NCRN Managers, and the EMCN Network Pharmacists who work closely with Mr Malcolm Qualie, Head of Policies and Pharmaceutical Advisor for the East Midlands Specialist Commissioning Group. Trials additional costs and cost savings were reviewed by the Specialist Commissioning Group in conjunction with the NCRN Managers and Network Pharmacists. A uniform approach is now in place for additional costs. Demonstration of the cost savings of trials has been more problematic. At the NSSG Meeting on 14 May 2010, Ms Sarah Hare NCRN Manager, acting as the delegated representative of the three East Midlands NCRNs presented data showing the current East Midlands Trials portfolio for lung cancer and recruitment by Trust MDT across the East Midlands. In the main the issues identified last year as having impeded recruitment have been addressed. MDT remedial actions are kept under review locally. The East Midlands Trials Portfolio for Lung Cancer and Mesothelioma is included in Appendix G. 8.0 Patient and Carer Feedback and Involvement 8.1 East Midlands Patient and Carer Feedback and Involvement The first EMCN Three Question Survey was undertaken and the response was disappointing. The returns were considered by the EMCN NSSG & Strategic Board and, as a result, raised with the stakeholder CEs. The results are also being used as part of the EMCN Section on the East Midlands Quality Observatory. However, despite the limited response no significant issues were identified. The survey is being redone in 2010 as the National Patient Satisfaction Survey will not be completed until late in the year. 8.2 Advanced Communication Skills Training (ACST) The East Midlands Cancer Network has, over the last eighteen months, run 44 Advanced Communication Skills Training Courses. For the year 2010/11 there are 26 organised. These courses are fully booked with a waiting list. Priority is given to core MDT members who have direct patient contact. The Network as a whole has 20 facilitators fully trained and 4 about to be fully accredited. EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 14/55

15 Advanced Communication Skills Training has been undertaken by the following for people involved in Lung Cancer and Mesothelioma services in the East Midlands Cancer Network:- Consultant Surgeon 1 Consultant Physician 8 Oncologist 1 Radiologist 1 Clinical Nurse Specialist 14 Palliative CNS 2 Specialist AHP 1 TOTAL FOR LUNG NSSG 28 Personal Experience Report by Dr Giles Cox, Consultant Respiratory Physician and Chair of the EMCN Lung Cancer and Mesothelioma NSSG I attended the ACST course in November, Like other delegates the drive for attendance was to meet the new Peer Review measure. Despite my natural scepticism I hoped I would learn something from the course. The video session on the second day was very revealing and slightly uncomfortable though in a positive way. I certainly have learnt the use of silence and also that I should probably give less information responding to the patient led agenda and not my own. I am sure I have taken on board some of the learning points and adapted my consultations accordingly. 8.3 Rehabilitation Pathways Nationally, nine site specific rehabilitation pathways including one for Lung Cancer has been published. The structure and stages of the pathways are similar in that each pathway begins with diagnosis and care planning, treatment, post treatment, monitoring and survivorship, through to palliative and end of life care. Twelve common symptom pathways have also been developed and are indicated via links within the site-specific pathways where they may be relevant. The EMCN approach to implementation of these pathways is to present the pathways to the NSSGs as best practice and to seek agreement from the NSSG Chairs to adopt and support the implementation of the pathways. The EMCH Allied Health Profession (AHP) Leads will support and guide this process and it has been strongly recommended that all NSSGs seek AHP representation. The EMCN Lung and Mesothelioma NSSG confirmed full support for this approach at the meeting held on 14 th May Information Patient Information is recognised as an integral part of the cancer care pathway. The importance of tailored information for patients is now better understood as a key component of the patient journey. EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 15/55

16 EMCN is striving to ensure that all patients and their carers are given the right information, individualised to meet their particular needs and accompanied, as required, by the support of a health care or other appropriately trained professional at different stages of the care pathway. The key focus over the past year for the EMCN Patient Information Managers (PIMs) has been to prepare stakeholders for the implementation of national Information Prescriptions. This has included:- Working with Cancer Lead Nurses and Clinical Nurse Specialists to identify current local information provision and good practice Holding initial pilot workshops to prepare teams for Information Prescription implementation Attending regular national information forums on behalf of the EMCN Participating in meetings e.g. NSSGs, Cancer Management Boards, CNS and Allied Health Professionals run by the Lead Cancer Nurses in the Trusts to raise the profile of Information Prescriptions and where possible answer queries and concerns regarding the implementation process As a result of this engagement and subsequent feedback the PIMs have influenced the development of the national information prescription tool. The PIMS are working closely with the Trusts in the EMCN to ensure Patient Information for lung cancer is embedded at every stage of the patient pathway. 9.0 Review of the Peer Review Remedial Actions and IOG Compliance The East Midlands Cancer Network Lung Cancer and Mesothelioma NSSG underwent successful submission of evidence and External Peer Review Validation in At the assessment the NSSG was deemed to be fully compliant against the measures. The report has been reviewed to see if qualitative issues could be addressed. As documented in 3.1 User Input in the NSSG there has been a drive and dedicated training to support patients who wish to become members of the NSSG. A dedicated patient representative for the EMCN Lung Cancer and Mesothelioma NSSG has not yet been found. Work through the EMCN Strategic Partnership Group and the Nurse Director is ongoing and it is hoped to secure a patient/carer representative this year Service Development Plan (Demonstrating Compliance with Measure 08-1C-113c) Following on from the East Midlands Lung and Mesothelioma Cancer NSSG on 14 th May 2010 a Service Development Plan for Lung and Mesothelioma Cancer across the East Midlands was re-confirmed to cover the period The key issues for development are summarised below:- a) Improving equity of access to diagnostics and treatments o PET turnaround times o Access to EBUS from all parts of EMCN o EGFR mutation testing EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 16/55

17 Service Issue EBUS TBNA Sites where available & issue to address Leicester UHL Glenfield Nottingham CHN Derby Developing a business plan Mansfield Nottingham Derby Burton Kettering Leicester Development Plan Action o Develop and support LOP business cases with local teams o Aim for inclusion in funding o Ensure access into system supported by Service Improvement Team o Support the development of Trust Business Cases for 2010/11 LOP Medical Thoracacoscopy BUT NOT Lincoln Northmapton Nottingham Mansfield Leicester Derby Burton (in training) o Support the development of Trust Business Cases for 2011/12 round Mesothelioma Services Tunnelled Indwelling Intercostal Drains Kettering developing a business plan Northampton developing a business plan Lincoln developing a business plan The majority of patients were discussed in Lung Cancer MDTs Sherwood Leicester Derby Kettering Northampton Nottingham o o o o Ensure quarterly MDT is embedded Business Case for additional resources if required Audit effectiveness Review need IGRT Northampton o Review in the NRAG Implementation 2010/11 PET CT Network wide o Audit of time of request of scan to availability of result b) Work with the Network Pharmacist to ensure equity of access to drugs across the East Midlands o Review of current chemotherapy protocols ongoing o Audit number of cases related to Gefitinib and associated pathology testing for EGFR c) Working with the Network Pharmacists to ensure robust horizon scanning for new drugs through the EM agreed Drugs Advisory process o Ongoing EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 17/55

18 d) Supporting the network review of the role and work load of the Clinical Nurse Specialists o Ongoing e) Acting on the feedback from LUCADA and Network Audits o Using audit results to support redesign of services as needed o Supportive business cases developed This Service Development Plan was agreed with the NSSG Chair at the meeting on 14 th May End of Life EOLC is included in the EMCN Action Plan agreed with the Department of Health on implementation of the Palliative & Supportive Care IOG Registry Data and Lines of Clinical Enquiry In order to ensure that there is equitable capacity and access to services the Trent Cancer Registry prepared data on incidence and survival for lung malignancy as part of the EMCN. These data are included in Appendix I. The NSSG will use these data to work with the Registry and the EMCN Team to understand the underlying significance of the data, strengthen data accuracy and ensure that outcomes are as high as possible. Improvements in staging data will be secured with the MDT work with the registry to ensure the MDT recorded April 2011 data requirements in the national contract are met. The data to be used as part of the Clinical Enquiry discussion was discussed National Quality Issues NCIN links are well established through Dr M Peake and the EMCN Director and LUCADA links via Dr Paul Beckett. It was noted with pleasure the national work presented at the NCIN Conference and the local items from this were considered, in particular the incidence, survival by network and resection and survival. A Mesothelioma MDT Planning Group has been convened as a subgroup of the East Midlands Cancer Network Lung and Mesothelioma NSSG. There is no formal Mesothelioma MDT and as a result patients were not always being given the choice of appropriate trials particularly MESO-VATS and MARS 2. At the meeting of the Mesothelioma MDT Planning Group of 14 th May 2010 a pathway for these patients was agreed. This is included in the Clinical Guidelines for the East Midlands Cancer Network Lung and Mesothelioma NSSG. The groups agreed to hold quarterly specialist meetings for education/business/trials recruitment for Mesothelioma which would include the core members of the MDT and other interested parties. Individual cases would still be discussed at the local MDTs. EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 18/55

19 14.0 Work Plan Review The Work Plan was reviewed and it was noted that progress was being made on most of the issues identified last year. Where progress was slow this will be raised with the respective leads Agreements Dr Giles Cox Consultant Physician in Respiratory Medicine, Sherwood Forest NHS FT Chair of East Midlands Lung Cancer and Mesothelioma NSSG 14th May 2010 Mr T Rideout Chairperson East Midlands Cancer Network Strategic Board 10 th August 2010 EMCN Lung Cancer and Mesothelioma Cancer NSSG membership agreed 14 th May 2010 Dr Vaughan Keeley, NCRN Clinical Lead Derby-Burton Dr Steve Nicholson, NCRN Clinical Lead - LNR Professor David Walker, NCRN Clinical Lead Mid-Trent 10 th August 2010 at EMCN Strategic Board EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 19/55

20 Appendix A EAST MIDLANDS CANCER NETWORK LUNG NSSG Derby-Burton, Leicester Northampton and Rutland, Mid Trent Research and Educational Meeting Friday 13 th November, 2009 The Whitehouse, Kegworth LUNCH will be provided at 1.00 p.m. Time Presentation Speaker 1400 Introduction and Welcome Samreen Ahmed Medical Oncologist LRI 1405 EBUS Series The Leicester Experience Halder Pranabashis Respiratory Research Fellow 1430 Keynote Speaker Molecular Markers in NSCLC Professor Penella Woll Sheffield University 1500 COFFE 1515 UHL Thoracic Oncology Nursing Team service Audit 1540 Audit of Management of Brain Metastases in Lung Cancer 1605 Has CTPET Reduced Incidence of Resected N2 disease in NSCLC Liz Darlison Nurse Consultant GGH Claire Esler Clinical Oncologist LRI Jacqueline Jacques Glenfield Hospital 1630 Discussion and Close 2 CPD points Supported by an unconditional grant by Pierre Fabre, Roche and Irwin Mitchell EMCN Peer Self-assessment /EM Lung NSSG Second Annual Report/ em 20/55

East Midlands Cancer Network (EMCN) Lung and Mesothelioma Network Site Specific Group (NSSG)

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