Notes of Lung CNG Wednesday 7th September 2011, 1.30 pm 3.30 pm Cancer Network Meeting Room, Riverside Park Bromborough Present Julie Hendry Chair / Consultant Respiratory Physician STHK Martin Walshaw Consultant Respiratory Physician LHCH/RLUH Alison Williams Associate Director MCCN Richard Page Consultant Thoracic Surgeon LHCH Joe Maguire Consultant Oncologist CCO Jim Finnerty Consultant Respiratory Physician COCH Anna Murray Cancer Information Analyst MCCN Martin Ledson Consultant Respiratory Physician LHCH In attendance Pauline Webster, Business Support Co-ordinator, MCCN Chris Romaniuk, Consultant Radiologist, CCO Hülya Wieshmann, Consultant Radiologist, Aintree Heino Hugel, Consultant in Palliative Medicine, Aintree Kay Kennedy, Lung CNS, Wirral attending on behalf of Zaroug Wahbi Lynne Newton, MCCRN, on behalf of Pat Gillis Wendy O Connor, Cardiac Physiology Trainer, Cardiac & Stroke Network Karen Graham, Data Improvement Manager, MCCN 1. Welcome & Apologies Julie Hendry welcomed all to the meeting, introductions were made and apologies received from Paul Walker, John Gosney, Steve Owen, John Holemans, Maria Guerin, Chris McManus, John Littler, Jo Bayly and Zaroug Wahbi. 2. Notes of the previous meeting The notes of the last meeting were agreed as an accurate record. 3. Actions from last meeting 3.1 Network Mesothelioma Review, Mesothelioma audit & national patient survey Diagnosed cases continue to be routinely notified to Martin Ledson and are being recorded on a central database each month. It is likely however that 100% of diagnoses are still not being captured. Martin and Anna are planning to do a mesothelioma audit and it would be helpful to get as much data as possible in order to establish a baseline. (The national meso framework recommends that networks undertake regular audit). Figures from the cancer registry show that there were 99 patients recorded in 2009, (a significant improvement on 2007/2008 figures). Mesothelioma data is recorded on LUCADA and this is the first year (2009) that they have received an adequate response from Trusts. The central database is being used as an interim measure to capture data and will be superseded when full implementation of Somerset Cancer Registry (SCR) across the patch is established. Anna discussed issues regarding the case note exercise that was undertaken which indicates patients being clinically diagnosed with mesothelioma but with no histology or ICD10 recorded. In some cases cancer of the pleura is the recorded diagnosis. Therefore if mesothelioma is not recorded it is not viable to audit those patients. It is important that all Trusts utilise SCR as this can inform outcomes on a national level. Karen Graham highlighted some national work with Page 1 of 6 Page 1 of 6
Coroners regarding feedback of mesothelioma findings to Trusts Cancer Services department for investigation so it can be captured on SCR. Maria Guerin and Andrea McIver are planning to review the SSMDT proforma and there may be changes at LHCH in terms of the referral contact for notification of diagnoses. The referral process will be as follows: Completed proformas/relevant information/radiology to be sent to LHCH by Lung Cancer Coordinator from the peripheral Trusts before midday Thursday. Outcome to be faxed back to local MDT point of contact likely to be LCN by midday Friday Maria has confirmed that the mesothelioma patient information prescription material is to be finalised at the Mesothelioma Network meeting in November. The National Patient Survey is due to be rolled out at the end of the year/early 2012. Maria also states for information that there is a Patient Carer Day being held on 1st October 2011, Novotel London. An opinion was sought from the group regarding the formal staging system for mesothelioma on LUCADA and SCR. The general consensus is that depending on the performance status this would be TNM staging, although the clinical value of staging is debatable. Julie commented that if patients are referred for active treatment by the SSMDT then an attempt should be made to formally stage them, although it isn t clear whether this is compatible with LUCADA. Karen will circulate the staging criteria and further consult the cancer registries advisory group (for SCR) on this matter. Julie will write to Mick Peake outlining concerns for staging and to seek a strategic view regarding the value of doing so. Action: All to contact Andrea McIvor if further clarification is required regarding the referral process. Karen Graham to circulate staging criteria and consult cancer registries advisory group re staging data Julie to write to Mick Peake outlining concerns re staging. Discuss at the next CNG. Martin Ledson to liaise with Radiologists at the SSMDT to get their agreement on what system is used to stage. 3.2 EGFR service Alison commented in John Gosney s absence: Activity update to be deferred to next CNG Turnaround times and cancer waiting time compliance any issues to liaise directly with John. There has been no feedback received or concerns raised since the last meeting. Issue of 62 day breaches due to delayed EGFR analysis oncologist view is that turnaround time is fine when John is around when he is away everything is batched and the turnaround is longer. A new technician has been appointed at the Royal and their role is to ensure the service continues in John s absence. Action: All to liaise / feedback any issues with John Gosney 3.3 CCO treatment data At the last meeting John Littler was asked to share CCO clinical audit & outcomes data by individual consultant. In John s absence, Joe Maguire went through the previously circulated NSCLC data request for the network April 2006 to March 2007. Joe informed the group that the figures have been discussed with the CCO Tumour Specific Group (TSG). The group agreed that there is a need to have a narrative to interpret the data particularly for the survival analysis. It was also agreed that 2008/9 data should now be made available in consideration of 1&2 year survival. Alison commented that it is in the CCO contract that they provide outcomes data to the referring Trust but this has not happened and this is Page 2 of 6 Page 2 of 6
the only data that they have received from CCO. It is unclear if the TSG or CCO Trust Board routinely reviews survival statistics and outcome data, but this should be routinely provided for discussion at CNG meetings. In terms of whether CCO are referencing LUCADA to cross check the TNM staging, Joe informed the group that the CCO Audit team use their own database and that LUCADA data can be overwritten. Karen confirmed that if CCO upload their data after LHCH it would automatically overwrite this, including clinical & final staging. From 2012 there will be a new minimum dataset mandated for Trusts to submit data to the Registry on a monthly basis. The Registry is currently in the process of putting a super system in place which will pull together all data to show the whole patient pathway for that cancer episode. This will enable to give the patient s full treatment pathway with outcomes by treating and diagnosing Trust within 6 months and this will be in place by September 2012. Action: 2008/2009 data to be requested from CCO TSG by Joe Maguire. Further discussions to take place outside of the meeting to determine what information is required in a report from CCO. Joe Maguire to share information he sent to CCO Chief Executive. 3.3 PET-CT issues Julie welcomed Chris Romaniuk and Hulya Weishmann who were invited to discuss operational PET- CT issues. A number of issues were discussed: Variation in staging on PET-CT reports. A recent local audit highlighted variation in practice amongst the PET-CT reporting Radiologists; Chris & Hulya confirmed that they are happy to provide stage whenever possible and this would be communicated to their colleagues. Jim Finnerty referred to the interpretation of CT scans and would like to see clear and precise reports giving the Radiologist s best opinion and conclusion as there is a risk of missing something in a lengthy report especially if the MDT is discussing 30 cases. Chris commented that it would be useful if all Trusts could send the most recent CT report along with the PET-CT request. Martin Ledson referred to the vetting process currently undertaken by the ARSAC licence holders when scans are requested. The group asked whether this could be removed so that local MDTs could directly request scans and reduce the length of time for the scan to be undertaken. This will need to be discussed with AML and Hulya / Chris agreed to raise this with them. There have been instances where MCCN patients are routinely offered a scan at Preston. If the patient refuses Preston then there are issues about whether the clock should be stopped and this needs clarification. In terms of delays for scans following biopsy; if a staging scan is required then should be no delay. Confusion can be caused by the patient telling AML they have had a biopsy, and this has meant that delays have been experienced. Therefore the term staging PET-CT should be used. Martin Ledson commented about the issue of not having the images available at the same time as the report. This was something that AML had committed to delivering but it doesn t routinely happen at the LHCH. Martin will review previous correspondence with AML to confirm their agreement and discuss further with Alison if necessary. Action: Chris / Hulya to further discuss relevant issues with AML Alison to liaise with Martin Stanley for clarification re Alliance contract re Preston Page 3 of 6 Page 3 of 6
4. Palliative Care and referral to the cordotomy service presentation Referral pathway for percutaneous cordotomy.ppt At the last meeting Julie referred to the palliative care section of the mesothelioma pathway with regards to pain management / cordotomy. Clinicians can refer patients directly to Consultants in Palliative Care at Aintree as Dr Heino Hugel has a joint clinic with the pain team at the Walton Centre. Patients are assessed pre and post procedure by the multi-disciplinary team. Dr Heino Hugel gave a presentation entitled Referral Pathway for Percutaneous Cordotomy. Action: Presentation to be circulated with notes All to share presentation and referral to cordotomy services with Palliative Care colleagues Heino to send annual referral activity figures/data within MCCN 5. CCO treatment data Discussed above under item 3.3. 6. Peer Review 2011/12 (including Clinical Lines of Enquiry CLOE and CNG work programme) Alison gave an update regarding evidence requirements. Alison will be circulating the following guidelines to the Trusts and they will also be available on www.mccn.nhs.uk website: Non small cell lung cancer oncology guidelines Small cell lung cancer guidelines MDT referral guidelines Lung CNG 3 key documents Alison is also awaiting confirmation of the following: Imaging guidelines Pathology reporting guidelines Follow up protocol Action: All to contact Alison if they require further MDT evidence 7 Clinical Trials recruitment and remedial action plans Lynne Newton informed the group that the research nurses are liaising more with clinicians and there has been progress in terms of recruitment into lung trials. Joe highlighted that reasons for poor uptake include a lack of availability of good trials to recruit to and a lack of congruence between the portfolio and what is routinely undertaken day to day. The majority of trials are only suitable for specialist groups. Alison referred to the inclusion of LHCH and CTC (same Trust) and also RLH being listed separately. These figures need to be amalgamated so that Trusts can appropriately consider their remedial action plans. Action: Lynne to feed back to MCCRN for action 8. Clinical Audit (CWT, LUCADA, CPI Report, PS Audit) Anna informed the group that MDT data in the CPI report has been validated for all Trusts. However, an issue has now been raised with the percentage of patients discussed at MDT, including those post Page 4 of 6 Page 4 of 6
mortem. Karen will look into the issue of recording of post mortem patients on SCR. The general consensus is that this is not required for the CPI report and the report can be signed off. With regards to the histology audit PS3/4 Anna has only received data from one Trust, the deadline is 1st October 2011. Action: Anna to present report on 2010 data at next Lung CNG The histology audit PS3/4 form to be re-circulated and move deadline to 1st November 2011; to be presented at next Lung CNG 9. NICE guidelines (summary) Paul Walker emailed some comments from an Aintree perspective: Use of neck US where mediastinal lymph nodes are >20mm short axis on CT at present we would sample a neck node that is enlarged on CT but won t when not enlarged. There is an evidence base for wider use of neck US in stage III and IV disease but it isn t great and the recent Thorax paper adds nothing to what we already know. Our radiologists have raised this before and shown interest. Use of CT/MRI head where patient is undergoing curative surgery and has stage IIIA disease We don t perform this but have discussed this with respect to various patients at MDT. The other situation is where the primary tumour has a very high SUV on PET-CT our surgeon has commented that anecdotally these patients often come back with brain mets at an early stage. The point in the guidelines is consider but it may be worth us trying to get a position agreed. I do not know what the surgical practice is with respect to risk assessment for cardiovascular mortality before surgery and postponing patients for surgery to stop smoking but this should be clarified by the Network surgical leads to establish the current practice. It was felt generally that these weren t contentious or necessarily mandated issues. The general consensus amongst surgeons is that the Chest Physicians should get the staging data before the patient sees a Surgeon. Action: Richard Page to define high risk and agree criteria with view to trial this for 6 months and then do an audit to analyse the pick up rate across the network 10. Any Other Business Karen Graham circulated a letter on ACE-27 Co Morbidity Projects update on funding. NCIN have written to announce that this funding is now not available for 2011/2012 and as a result NCIN will not be able to support this project. However, Karen informed the meeting that the network is funding Tableaux which enables LUCADA data to be analysed. Tableaux license has gone out to all Trust Data Managers and is on the Desktops, all data managers have been trained and Anna is in the process of setting up the Desktops and getting a live feed from each service to the Desktops so that you can routinely review the LUCADA data. Action: Karen to keep the group updated CNS representative on Lung CNG if no one CNS can commit, representation can be on a rotational basis from the CNS group. Action: Kay to feedback to CNS group Page 5 of 6 Page 5 of 6
FOR INFORMATION 11. Lung CNG meetings 2012 Wednesday 29.02.12, 1.30 pm Wednesday 30.05.12, 1.30 pm Wednesday 12.09.12, 1.30 pm Wednesday 28.11.12. 1.30 pm All meetings will be held in the Network Meeting Room, Riverside Park Bromborough 12. Date of next meeting Monday 28 November 2011, 1.30 pm Network meeting room, Riverside Park, Bromborough CH62 3QX Page 6 of 6 Page 6 of 6