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

East Midlands Cancer Network (EMCN) Lung and Mesothelioma Network Site Specific Group (NSSG) Minutes of the meeting held on Friday 13 th May 2011 10.45am-1.00pm Whitehouse Hotel, Kegworth, DE74 2DF Dr Giles Cox (Chair) Consultant Chest Physician, SFHFT Dr Samreen Ahmed SA Consultant Oncologist, UHL Dr Ruth Aldridge RA Consultant Physician, DHFT Helena Alvey HA Macmillan Specialist Physiotherapist, NUH Dr David Baldwin DB Consultant Respiratory Physician, NUH Dr Paul Beckett PB Consultant Physician, BHFT Dr Jonathan Bennett JB Consultant Respiratory Physician, UHL Kate Brady KB Clinical Nurse Specialist (CNS) Dr Abhro Chaudhuri AC Consultant Oncologist, ULHT Dr David Clifton DC Consultant Physician, ULHT Liz Darlison LD Consultant CNS Natalie Geddes (representing NG Service Development Manager, EMCN Janet Duffin) Helen Ginnelly (representing Julie Berridge) HG Support Manager, Mid Trent Cancer Research Network (CRN) Dr Ivo Hennig IH Consultant Oncologist, NUH Lesley Holland LH CNS, KGH Dr Judy Holt JH Consultant Radiologist, DHFT Rita Hopkin RH Allied Health Professional (AHP) Lead, EMCN Sandra Hummerston SH CNS, NUH Dr Choi Mak CM Consultant Clinical Oncologist, NGH June Morley JM CNS, SFHFT Dr Salli Muller SM Consultant Histopathologist, UHL Mr Apostolos Nakas AN Consultant Thoracic Surgeon, UHL Dr Josephine Ojoo JO Consultant Chest Physician, NGH Malcolm Porter MP User Representative Dr Kate Scheele KS Consultant Respiratory Physician, ULHT Dr Irshad Soomro IS Consultant Histopathologist, NUH Anna Tranter AT Senior Occupational Therapist, DHFT Louise Walker LW Local Improvement Lead, EMCN Mr David Waller DW Consultant Thoracic Surgeon, UHL Apologies: Dr Sanjay Agrawal, Julie Berridge, Dr David Boldy, Kim Bowles, Dr Philip Camilleri, Jon Currington, Dr Hany Eldeeb, Dr Cheika Kennedy, Dr Elspeth Macdonald, Mr Antonio Martin-Ucar, Dr Mick Peake, Dr Kate Pointon, Dr Cathy Richards, Sally Rowe, Loraine Sheehan, Dr Esther Waterhouse, Gina Wibberley Page 1 of 11

1. Welcome / Introductions & Apologies Dr Cox welcomed Malcolm Porter, User Representative, to his first EMCN Lung NSSG meeting. Round table introductions were made and apologies noted as above. 2. Minutes of the Last Meeting Friday 5 th November 2010 (Paper A) The minutes were agreed as an accurate record of the discussions. 3. East Midlands Lung NSSG Clinical and Referral Guidelines Review (Paper B) 3.1 General Review of Guidelines Dr Cox reported that the Mesothelioma Subgroup had decided to remove the Mesothelioma Clinical Guidelines from the Lung NSSG Clinical Guidelines due to the lack of evidence for the treatment of Mesothelioma. The Mesothelioma Subgroup will write a separate document of treatment principles for Mesothelioma. It was agreed that undiagnosed pleural effusion would be kept in the NSSG Clinical Guidelines. Most of the NICE Clinical Guidelines had been captured in the NSSG Clinical Guidelines. It was agreed that Epidermal Growth Factor Receptor (EGFR) mutation testing would be added to the Pathology section of the NSSG Clinical Guidelines. Dr Salli Muller at Leicester said she would do this and include an update on EGFR mutation testing. Dr Cox agreed to add Radiofrequency Ablation (RFA) as an option into the NSSG Clinical Guidelines SM Post Meeting Note the Clinical Guidelines have been updated It was agreed that Photodynamic Therapy would be added to the NSSG Clinical Guidelines. It was noted that the EMCN was not currently providing Photodynamic Therapy. The EMCN had previously referred to Northern Lincolnshire and Goole Hospitals NHS Foundation Trust and The Leeds Teaching Hospitals NHS Trust for Photodynamic Therapy. The introduction of Photodynamic Therapy had been included in the NSSG Work Programme. The selection of patients for Photodynamic Therapy was discussed. The NSSG agreed that Photodynamic Therapy could be used for pre-malignant or endobronchial disease not amenable to other treatment options. Members discussed the treatment of Autofluorescent Bronchoscopy and Dr Baldwin has been undertaking some preliminary tests Fitness assessment included in the NSSG Clinical Guidelines did not fully match the NICE Clinical Guidelines. Dr Cox agreed to make reference to the NICE Clinical Guidelines for fitness assessment Page 2 of 11

within the NSSG Clinical Guidelines. Dr Muller agreed to circulate the new National Pathology Guidelines and provide Dr Cox with amendments for the Pathology section of the NSSG Clinical Guidelines. Mr Waller suggested that Thymic Malignancy be included in the NSSG Clinical Guidelines as international guidelines were available. This would be addressed via the afternoon Education meeting in November. Dr Cox agreed to update the NSSG Clinical Guidelines as agreed above and circulate them for review and comment before being signed off at the 4 th November 2011 meeting. 3.2 Guidelines on the Radical Management of Patients with Lung Cancer Response to the British Thoracic Society (BTS) Consultation on the BTS Guidelines on the Radical Management of Patients with Lung Cancer had passed and publication was awaited. SM Educational programme 04 11 11 Agenda 04 11 11 4. Peer Review Visit 27 th January 2011 Feedback (Paper C) Dr Cox reported that the visiting Peer Review Panel queried the omission of Lung Metastases Clinical Guidelines from other tumour sites in the Lung NSSG Clinical Guidelines. Dr Cox responded that these should be available in the tumour site s Clinical Guidelines and not the Lung NSSG Clinical Guidelines and that the Lung NSSG had and would continue to help other tumour sites write Lung Metastases Clinical Guidelines. Members commented that the timeliness of referrals from other MDTs to the Lung MDT was impacting on Cancer Waiting Times (CWT) breaches. Dr Cox agreed to write to the EMCN Colorectal NSSG asking if they had Lung Metastases Clinical Guidelines and if so could they share them and if not to offer the support of the Lung NSSG in writing them. Subsequent to the meeting it is clear that the Colorectal NSSG has Lung Metastases Clinical Guidelines recently updated by Mr Waller and Mr Nakas. No further action required. The Peer Reviewers raised concern for: Unexplained wide ranging variation in Clinical Lines of Enquiry data outcomes. The NSSG agreed to review the Clinical Lines of Enquiry Data at the 4 th November 2011 NSSG Education meeting. Localised referral pathways could be clearer in the Constitution and Guidelines Dr Cox agreed to review them and clarify the localised referral pathways where necessary. Educational programme 04 11 11 Page 3 of 11

User Involvement in NSSG issues could be more routine the NSSG was pleased to welcome Malcolm Porter to his first meeting. The EMCN would endeavour to recruit a second User Representative. The Peer Reviewers identified the following Good Practice and Significant Achievements of the NSSG: The successful merger of the three former Networks to a unified larger Network Strong education component integrated into the NSSG meetings Robust engagement with commissioners to address topical issues such as provision of EGFR testing and increased equity of access for PET scanning Introduction of Radiofrequency Ablation Robust appraisal process for the NSSG Network Clinical Nurse Specialist review. Dr Cox advised the NSSG that his two year tenure as NSSG Chair had come to an end. Chairmanship of the NSSG was opened up. However, a volunteer was not forthcoming. Dr Cox kindly agreed to continue to Chair the NSSG in the absence of a new volunteer. Members asked that their thanks to Dr Cox be formally noted in the minutes for his Chairmanship and work to evidence the NSSG s compliance with Peer Review. MDTs reported that they struggled with palliative care input and that this had been an ongoing problem for some time now. The CNS issue at United Lincolnshire Hospitals (ULHT) had been raised two years in a row by Peer Review however it had still to be resolved. The current CNS was planning to retire. The ULHT MDT was encouraged to apply to Macmillan for funding rather than apply for internal funding. Natalie Geddes advised that in an effort to reduce the burden of Peer Review in 2011/12 a Self Assessment Amnesty had been introduced. Teams that scored 85% compliance or more with Peer Review Measures and had no Immediate Risks or Serious Concerns raised in the 2010/11 cycle of Peer Review were eligible for the Self Assessment Amnesty. Teams eligible for the Self Assessment Amnesty had been confirmed on CQuINS as the University Hospitals of Leicester NHS Trust (UHL), Kettering General Hospital Foundation Trust (KGHFT) and Northampton General Hospital NHS Trust (NGH) Lung MDTs. The NSSG was also eligible for the Self Assessment Amnesty and this was being confirmed with the Central Zone Peer Review Team. Natalie Geddes advised other eligible MDTs to highlight this with the Cancer Centre to be raised with the Central Zone Peer Review Team. Eligible Teams will not have to update, Self Assess and upload Peer Review Evidence onto CQuINS in the 2011/12 cycle of Peer Review. Page 4 of 11

5. Clinical Lines of Enquiry Update on Collection of Relevant Data Members reported that retrospective audits revealed inaccuracies in the Clinical Lines of Enquiry data. MDTs were encouraged to investigate and improve data accuracy where required. ULHT s Lung Cancer Data (LUCADA) was not being entered consistently during the MDT Coordinator s maternity leave. The Cancer Centre was not resolving this issue. Members agreed that it was the MDTs responsibility, via revalidation, to ensure that the data collected was accurate. This item will remain on the agenda. Agenda 04 11 11 6. Network Audit It was not possible to maintain the Audit Subgroup with face to face meetings. Interested members of the subgroup had maintained contact via e-mail. 6.1 EGFR Testing Update at Education Meeting An update would be provided on the Nottingham University Hospitals NHS Trust (NUH) Service at the afternoon Education meeting. EGFR Audit The EGFR testing audit was completed last year. It was confirmed that the drug companies were happy to run East Midlands wide audits on EGFR testing. The drug companies had conducted a Network wide EGFR testing audit for the North Trent Cancer Network. MDTs would need to submit the data to the drug companies. If the Oncologists were interested in this approach it could be included as a Network audit. It was confirmed that EGFR testing for East Midlands patients was currently being done by NUH, NHS Grampian (Aberdeen Royal Infirmary) and University Hospitals Birmingham NHS Foundation Trust. 6.2 LUCADA (Paper D) Most MDTs were submitting data with the exception of ULHT who were in the process of submitting data. Dr Beckett will be presenting LUCADA data on Mesothelioma patients at the next Mesothelioma Subgroup meeting. Meso Agenda 04 11 11 It was suggested that the NSSG audit PET CT turnaround times as a Network audit. Access issues for Burton Hospitals NHS Foundation Trust (BHFT) had been resolved. The bulk of BHFT PET CT requests were organised before the MDT meeting and that had improved access. ULHT was experiencing access issues from NUH and were now waiting up to two weeks. ULHT reported that they had timely access to the images but not the report. ULHT had experienced Page 5 of 11

issues with referring for Cancer of Unknown Primary (CUP) as PET CT was not funded for that. The NSSG wished to review the following PET CT information: Date of MDT Date of PET CT request Date of PET CT Date PET CT Report received The NSSG wanted to find out if the PET CT Services were Providing the MDTs with a timely service. The NSSG decided to ask the PET CT Services to audit turnaround times rather than gather the information locally. Dr Cox agreed to write to the NUH, Burton and LNR PET CT Services to request the turnaround times data. 6.3 Retrospective Audit of Treatment of Patients with Stage I and II NSCLC Dr Beckett commented that LUCADA data was not rich enough to answer the questions the NSSG was asking. Members felt that a prospective audit would be very useful but time and labour intensive. The NSSG agreed to scope the treatment of patients with stage I and II NSCLC using LUCADA before implementing prospective data collection. Dr Beckett agreed to extract the data from LUCADA for review at the 4 th November 2011 NSSG meeting. PB Educational programme 04 11 11 7. Network Research Trials Portfolio and MDT Recruitment and Remedial Actions if Required (Paper E) Helen Ginnelly attended on behalf of the three Cancer Research Network (CRN) Managers to present the Trials Portfolio Update (Paper E). Overall trial activity and recruitment had been good and studies were open for most stages of the disease across the CRNs. Reports from the MDT s included: Derby Burton CRN: Top recruiter in UK for Lung Star Recruitment in lung is generally good, no concerns, appreciation to the team expressed Mid Trent CRN: NUH o Participation good o IRESSA top recruiter in UK o ET and PULMICC studies about to open to recruitment o Interest expressed in several new studies by the MDT ULHT o ET recruiting well however chemotherapy department capacity means patients have to be treated as in-patient for day 1 (taking up an acute bed) o MALCS recruitment steady Sherwood Forest Hospitals NHS Foundation Trust (SFHFT) Page 6 of 11

o Recruitment info Lung Star, FRAGMATIC is good o MALCS still open to recruitment Leicestershire, Northamptonshire and Rutland (LNR) CRN: UHL o Working hard to get studies open in all lines so new and relapsed patients have option of study. o MAGRIT activity high but very few positives o New weight loss study commenced workup via CTU. The NSSG noted that there were no actions for improvement and confirmed Dr Ahmed as the NSSG Research Lead. Dr Baldwin updated the group on a multi centre bid submitted by Prof Poulam Patel to Cancer Research UK (CRUK) for the EMCN to become an Experimental Cancer Medicine Centre (ECMC). The results of the bid should be confirmed later in the summer. If successful the ECMC would further support research into lung cancer in the East Midlands and attract new recruits to the EMCN. 8. Clinical Nurse Specialist (CNS) Subgroup 8.1 Feedback from CNS Subgroup Meeting 5 th May 2011 Liz Darlison advised that the CNS Subgroup met twice a year. A tri- Network CNS meeting would be held on 6 th June 2011 with the Arden and Pan Birmingham Cancer Networks. Liz Darlison fed back on three projects being delivered by the CNS Subgroup 1. CNS Workload Audit Project completed. The CNS Subgroup felt that a prospective audit was not achievable. Liz Darlison highlighted shortages in Lung CNS numbers across the Network with a vacant post at SFHFT not being advertised and no cover for leave and insufficient hours at ULHT. It was suggested that the retirement of the CNS at ULHT might be covered by a cross site cover post. 2. Bereavement Project bereavement guidelines were being progressed. 3. Audit Project abandoned as CNS Subgroup not suited to completing audits over a period of time. The CNSs were thanked for their work. 8.2 National Patient Experience Survey 2010 (Paper F) The results of the 2010 National Patient Experience Survey (Paper F) were shared with the NSSG for information. Post Meeting Note: MDTs are encouraged to review the results and develop and implement action plans to address areas of poor patient All Page 7 of 11

satisfaction. 8.3 Other Patient Carer Issues No further patient carer issues were raised. 9. East Midlands Lung Cancer NSSG Work Programme Dr Cox agreed to review and refine the Work Programme to make it more workable. 9.1 Opportunities to Influence Commissioning Network Plan for Developing Endobronchial Ultrasound (EBUS) and Medical Thoracoscopy Services Update There was consensus prior to the NSSG meeting via email that EBUS would be better centred. EBUS was currently provided by UHL and NUH and the NSSG agreed to continue with this as NUH and UHL could increase capacity if demand increased. The NSSG noted that CWT breaches had occurred due to EBUS. 10. Survivorship Cheryl Tomlinson presented the EMCN approach to Survivorship to the NSSG for agreement to begin the Survivorship project in lung cancer services. Cheryl Tomlinson explained that for secondary care survivorship covered end of active treatment to discharge. The project would largely focus on follow-up and patient self management. National Survivorship Pathways had been developed for use locally. Cheryl Tomlinson proposed working with MDTs to baseline pathways and develop pathways that reflected the Survivorship journey in the EMCN. There would be a Service Improvement Facilitator working with each MDT to baseline the pathway and each MDT would be asked to nominate a Clinical Champion for Survivorship to drive the work forward. Variances in the survivorship pathway across the EMCN would be brought back to a future NSSG meeting for review. CT Patient and General Practitioner (GP) involvement was queried. Cheryl Tomlinson responded that the project would consider the National and Macmillan Patient Experience Survey results and would involve the EMCN Partnership Group. There should be a nominated GP Cancer Lead for each county. The GP Cancer Leads would be involved in the work of the Survivorship project. The EMCN will be holding GP road shows asking GPs what they want from the Cancer Network. The NSSG agreed for the Survivorship project to be delivered for lung cancer services. Malcolm Porter highlighted that patients now focus on living with cancer. The NSSG discussed evidence that maintaining a positive attitude improves survival. Page 8 of 11

Malcolm Porter was keen that the NSSG focus on awareness and early diagnosis of cancer. Cheryl Tomlinson explained that National Awareness and Earl Diagnosis Initiatives (NAEDIs) were underway across the EMCN. Dr Cox asked that the NAEDIs be fed back at a future meeting. EMCN Team 11. TYA Pathway For Information Dr Cox commented that very small numbers of lung cancer patients were Teenagers and Young Adults (TYA). Local Oncologists should be aware of the TYA Service and MDT and should endeavour to enter patients into the TYA Service. Dr Cox confirmed that patients under 25 should automatically be referred to the TYA MDT. Dr Hennig advised that the TYA MDT would provide psychosocial support and age specific trials entry. Dr Hennig agreed to provide some notes about the TYA Service for inclusion in the NSSG Clinical Guidelines. Three age appropriate units were opening across the EMCN, one at UHL and two at NUH. IH 12. Rehabilitation Pathway Update Rita Hopkin, EMCN Allied Health Professional (AHP) Lead, reminded the NSSG that the National lung cancer rehabilitation pathway had been presented at the May 2010 NSSG meeting and that the NSSG had agreed to adopt the pathway as best practice. The NSSG asked for the pathway to be re-circulated to the NSSG and presented at the next CNS Subgroup meeting. Rita Hopkin updated that a rehabilitation mapping event had been held and as anticipated revealed gaps in rehabilitation provision for lung cancer patients. The outcomes of the mapping exercise will be fed back at the 4 th November 2011 meeting. RH RH Rita Hopkins described the Macmillan funded Care project at NUH. NUH was the only part of the Network that met the standards for lung cancer rehabilitation. Macmillan funding for the Care project runs out next year and the service might cease to exist thereafter. Rita Hopkin commented that the Care project provided a unique learning opportunity for the EMCN. The EMCN AHP Leads were trying to secure AHP representatives for each of the NSSGs. Anna Tranter, Senior Occupational Therapiest, Royal Derby Hospital and Helena Alvey, Macmillan Specialist Physiotherapist, NUH were in attendance at the meeting and are invited to become members of the group. 13. Update from Mesothelioma Subgroup Meeting Prior to this Dr Aldridge updated that due to the lack of evidence for the treatment of Mesothelioma the Subgroup would write a separate document from the NSSG Clinical Guidelines of treatment principles for Mesothelioma. This would include the chemotherapy algorithm being developed by the Oncologists and EMCN Lead Pharmacists. Page 9 of 11

The Subgroup will explore how Mesothelioma is being treated across the EMCN. The Subgroup will look at variations in light of the lack of treatment evidence. The Subgroup will audit the accuracy of LUCADA data upload and look at how Mesothelioma is diagnosed. Meso Agenda 04 11 11 14. Any Other Business 14.1 Feedback from the 11 th February 2011 Lung Leads workshop Dr Ruth Aldridge represented the Network at the Lung Leads Workshop. Highlights of the meeting were reported to the NSSG today:- 1. Novel approaches to patient information was discussed (for example, printing out a diagnosis/treatment summary for patients whilst in clinic. 2. The best approach to follow up of lung cancer patients was discussed e.g. surgical, physician, oncology lead, doctors versus nurse specialist. However, there was no consensus identified. A presentation by Henrik Möller (Director of Thames Cancer Registry) was given on the relationship of lung cancer resection rates to survival which identified the East Midlands as an outlier. The data suggested there was a lower survival in resected NSCLC and all NSCLC in the East Midlands. This data will be looked at carefully and discussed at the next meeting of the group. Agenda 04 11 11 14.2 Feedback from Recent Meeting with the Cancer Registry Dr Beckett advised that the Cancer Registry had agreed to undertake some analysis for the NSSG. Analysis to be reviewed at a future meeting. 14.3 Photodynamic Therapy Previously discussed under item 3. 15. Confirmation of Date of Next East Midlands Meeting An NSSG Education meeting followed the Business meeting on Friday 13 th May 2011. The next meeting was confirmed as: Friday 4 th November 2011 9.30am-10.30am Mesothelioma Subgroup meeting 10.45am-1.00pm NSSG Business meeting 1.00pm-2.00pm Lunch & Registration 2.00pm-5.00pm NSSG Education meeting Page 10 of 11

Whitehouse Hotel, Kegworth, DE74 2DF (M1/J24) Members were asked to share suggestions for internal presentations and external speakers for the 4 th November 2011 Education meeting with Dr Ahmed at samreen.ahmed@uhl-tr.nhs.uk All Page 11 of 11