Meeting of the Network Site Specific Group for Lung Cancer

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					             Meeting of the Network Site Specific Group for Lung Cancer
               Thursday 25th October 2007. Tamar room, Arundell Arms, Lifton
     Nick Withers, Chair   Consultant Physician, RDE
     Liz Alsbury           Network Service Development Manager, PCN
     Gilly Beail           Network User Facilitator, PCN
     Peter Froeschle       Consultant Surgeon, RDE
     Penny Hodgkiss        Network Information Manager, PCN
     John Isaacs           Consultant Radiologist, SDHC
     Samantha Maher        Network Group Manager, PCN
     Mike Oliver           Consultant Chest Physician, NDHC
     Sue Pascoe            Lead Cancer Nurse, RCHT
     Philip Pearson        Consultant Respiratory Physician, PHT
     Jack Samuels          Patient representative
     Margaret Samuels      Carer
     Sue Stevens           Senior Cancer Projects Facilitator, RDE
     Liz Toy               Consultant Clinical Oncologist, RDE
     Lyndsae Wheen         Consultant Histopathologist & Cytopathologist, PHT
     Dennis Yiannakis      Consultant Clinical Oncologist, PHT

1.   Apologies and Introductions
     Nigel Bailey, RCHT         Kate Lansdell, PHT                 Surud Sardesai, RCHT
     Richard Berrisford, RDE    Adrian Marchbank, PHT              Chris Sheldon, RDE
     David Chambers, PCN        Alison Moody, NDHC                 Paul Treweeke, NDHC
     Geoff Cogill, SDHC         Mark Napier, RDE                   Marilyn Wastie, NDHC
     Sandra Collinson, RDE      Joe Rahamim, PHT                   Hugh Wills, Patient
     Carolyn Devine, NDHC       Fran Redman, NDHC                  representative
     Tim Howell, PHT            Glyn Rees, PCN

2.   Minutes of the last meeting (22nd March 2007)
     The minutes were agreed as a true and accurate record of the meeting held on the 22nd
     March 2007.
     DY handed over Chair of the group to NW. DY congratulated NW on his appointment. On behalf
     of the group NW thanked DY for his enthusiasm and leadership during his time as Chair.

3.   Matters arising and action points
     3.1     Out of Network referrals
     Patients eligible for the MARS trial should be referred to the Lung Cancer Clinical Oncologist
     at Leicester to ensure discussion at MDT and referral to trial. Concerns were raised about
     procedures taking place outside of trial. At present Leicester is the only centre offering
     extrapleural pneumonectomy. Surgeons within the Peninsula are not keen to join the trial.
     3.2      DTAC
     NW noted the horizon scanning document circulated by Libby Hardy, Network Pharmacist.
     This identifies therapies which are in clinical development through to launch as well as
     licence extensions to existing products but have yet to be reviewed by NICE. The document
     identifies potential service and economic implications of the use of these therapies.
     Members reviewed the drugs identified for the treatment of lung cancer.

     3.3     Succession planning
     As NW has taken on the role of Chair of the NSSG the role of Service Improvement Lead is now
     vacant. DY suggested the holder of this role could also be Chair Elect. It was suggested to
     circulate the role of Chair around the Network to maximise engagement from each locality.
     ACTION          NW to liaise with RCHT to identify potential candidate for Service
                     Improvement role

     3.4    Research & Development
     Additional Peer Review measures have been introduced relating to research activity. Each
     NSSG is required to produce and agree a trial portfolio. MDTs should appoint a research
     representative and discuss the trial portfolio, noting issues around trial activity such as
     reasons for poor recruitment or reasons for not partaking in particular trials. The NSSG then
     reviews MDT reports and identifies remedial actions which MDTs should aim to implement.
     Members discussed the implications of these measures.
     It was noted that 2007 has not been a strong year for recruitment to trials. This has been seen
     nationally. There are only three active lung trials at present (SOCCAR, TOPICAL, BTOG2).
     INCH (Induction chemo + CHART vs CHART alone in NSCLC). LT queried if PHT’s lack of
     involvement in this trial was resource related. DY noted that a common reason for PHT not
     participating in trials was poor trial design. Trusts should not be coerced to take part in trials
     they do not have full confidence in.
     SOCCAR (Sequential or Concurrent Chemotherapy and radiotherapy in NSCLC) is
     underway at RDE and SDHC. Geoff Cogill has shown greatest success in recruitment.
     MALCS (Mesothelioma in relation to occupation). This has been one of the best performing
     trials but recruitment has tailed off.
     There are a number of trials to be added to the portfolio including Liverpool Lung Project,
     CONVERT, and MESOVATS. The group agreed to continue with trials in the current portfolio.
     ACTION         NW to contact all Lung MDT Leads to remind them of requirements for
                    research measures and to identify an MDT research representative
     ACTION         Research & Development to be added to next meeting agenda

4.   Service development
     LA noted that the current focus for service development is care pathways but this is not its
     only function. Work has been ongoing to look at waiting times and delays in meeting targets.
     In lung this relates predominantly to tertiary referrals and delays in the referral process, PET
     and CT scanning. LA and PH are looking at the tertiary referral process to help increase
     efficiency and timeliness. From 107 cases there were six breaches, four of which related to
     administrative processes.
     4.1     Care pathways
     LA thanked all group members who have contributed to the development of care pathways.
     Pathways are being developed to help inform the commissioning process, highlighting the
     elements of the pathway and identifying costs. These are intended to illustrate the pathway
     for the majority of patients but it is recognised there will be some complex cases that fall
     outside the pathway. Network developed work can now be uploaded on the national web-
     based Map of Medicine ( There may be local adaptations to the
     generic Network pathway which will be negotiated on an individual Trust basis. PP noted
     there had been some problems developing the PHT adaptations.
     ACTION          PP to liaise with Jonathan Taylor, PHT Service Improvement Facilitator
                     to complete PHT pathway
     ACTION          NW to amend RDE pathway
     Completed pathways will be compiled by LA and forwarded to NW for checking with MDT
     Leads before final sign off.
5.   Information and support for mesothelioma patients: review
     Mesothelioma leads did not attend the meeting or send a written report. Item deferred.

6.   Advanced bronchoscopic techniques
     NW emailed around Network members to enquire about the current use of techniques and
     interest in development. There is occasional use of blind transbronchial needle aspiration. At
     present there is no photodynamic therapy and little desire to take this forward. PHT use laser
     and stenting; RDE use endobronchial diathermy and stenting. Members were asked to
     consider if further services are required.
     JI queried if the same equipment could be used for EBUS as in oesophago-gastric
     ultrasound. Members discussed the compatibility of different systems and equipment. Work
     presented at the American Thoracic Society and the World Lung Cancer Conference detailed
     some interesting developments in this field. Members queried the potential for negotiating a
     deal with suppliers or if involvement in specific research trials could facilitate use of this
     equipment. EBUS is not yet a proven way of obtaining biopsies. Interest in developing EBUS
     may depend on results from research trials.
     Autofluorescence is currently available at PHT. This can be a useful training tool for less
     experienced bronchoscopists.

7.   Patient representatives: current issues
     NW thanked JS, MS and Hugh Wills for their continued support to the group. It was
     previously suggested that JS and HW could provide a testimony about their experiences. JS
     shared details of his testimony with the group (circulated as separate document).
     The outcome for JS has been good but it was queried if anything could have been done to
     improve the patient journey. A number of points were raised by JS and MS:
     - the diagnosis and initial management decision had been difficult and both he and his wife
         would have appreciated a member of staff to take time to talk over the disease and the
         possible outcomes.
     - the prospect of a one stop assessment and diagnosis clinic as used in Liverpool was very
     - more thought could be given to the person which might help them work with hospital
         processes, for example, when a patient comes into hospital at 8.30 am for a blood
         transfusion which doesn’t actually take place until the afternoon. If the patient had been
         aware of this possibility they could have come prepared with a book.
     GB noted that Hugh Wills had attended the North Devon Cancer Day and raised the issue of
     the treatment of carers. His wife as carer had felt abandoned with little support given to help
     understand her husband’s diagnosis or his needs during and after treatment. MS noted that
     she had not experienced these problems while supporting JS.
     NW noted that a patient satisfaction survey had been undertaken previously and it may be a
     good time to look at running this again. This should complement the surveys undertaken by
     Nurse Specialists.
     ACTION         NW to look at reviving patient satisfaction survey across the Network. JS
                    and HW to review content prior to circulation

8.   Nurse Specialists: current issues
     8.1    Mesothelioma patient information packs
     There is no further information about the development of a generic information pack for
     ACTION         SP to email Kate Lansdell to request details on progress and feed back
                    to next meeting

      8.2     LUCADA dataset
      At the last meeting the importance of ensuring staging was recorded at the MDT meeting
      was stressed. It was noted there are five CNS specific items are within the dataset. It is
      important that CNSs are involved in this.
      It was noted that Nikki Thomas will be taking on the role of Network Nurse Director from
      January 2008.

9.    Audit
      9.1    Current audit activity: update and review of current projects
      Sleeve resection     There was a lack of responses to the draft pro forma.
      ACTION        NW to follow-up with surgical representatives and request suggestions for
                    alternative audit topic if agreement cannot be achieved
      Non small cell lung cancer Replies have been received from most Trusts. Some data is
      still outstanding. There is an apparent anomaly in the data:
             RDE       22
             PHT       13 (DY data only)
             NDHC 11
             RCHT 10 (may be additional data to be added)
             SDHC 30
      It is not clear why there are greater numbers at SDHC. It was queried if this could be due to
      late referral or presentation of cases.
      ACTION           Report findings at next meeting

      9.2   Completed audit projects: presentation of results and identification of action points
      No completed audit results were available to present at this meeting.

      9.3    Audit planning: identification of future audit projects
      Members discussed potential future audit topics
      - GemCarbo               combination chemotherapy treatment (gemcitabine and carboplatin)
          used as first line for palliative treatment (except PHT). Research undertaken at Christie’s
          suggests 1 in 5 patients require haematological support. It was queried if there is
          adequate dose intensity for this within the Network.
      - Rate of CT pre and post broncoscopy
      - Treatment and outcome of stage 3 lung cancers
      - MDT decision versus actual treatment delivered
      - Outcomes for mesothelioma               It was noted that Neil Ward has moved to a research
          post at Brompton and will be unable to undertake this piece of work.
      ACTION          PH to circulate mesothelioma information to group members
      PH stressed the importance for Trusts to concentrate on participation in LUCADA and to
      ensure completeness of data as far as possible. This national lung cancer audit collects
      information on referral, diagnosis, treatment and outcome for people diagnosed with lung
      cancer or mesothelioma. The aim of the audit is to better understand the incidence of lung
      cancer within the UK, to describe the range of treatments utilised and to explore regional
      variations in treatments and outcomes. Using data that has been risk-adjusted for case mix,
      the audit has the potential to explain some of the wide variations found in outcome.
      ACTION           Tim Howells to liaise with PH about LUCADA and mesothelioma data

10.   Any other business
      10.1 Molecular pathology
      Members discussed some of the recent developments in molecular pathology. The ERCC1
      gene indicates better response to chemotherapy. Mutation analysis is being undertaken at

      the Royal Marsden. A number of candidate genes are being coming through. It was noted
      London and Birmingham have appointed molecular pathologists to NHS clinical posts. At
      present this is largely linked into research trials. There is molecular genetics support
      available at present within the Peninsula. It is probably not possible at present to look at
      developing this locally. It is not clear if this is a clinical service or pathology issue but it should
      be flagged up as a potential area for future developments. This is an issue with potential
      impact for a number of tumour sites.
      ACTION          NW to correspond with Simon Rule, Network Medical Director to flag up
                      this development

      10.2 Mesothelioma educational event
      Discussions are underway to hold an educational event in January or February 2008. This
      will be led by Tim Howells and Kate Lansdell. Further details will be circulated when

11.   Dates of future meetings:
      2pm Thursday 24th April 2008. Arundell Arms, Lifton. PLEASE NOTE CHANGE TO ADVERTISED DATE
      2pm Thursday 2nd October 2008. Arundell Arms, Lifton

      Signed                                           Chair           Date

                                 Meeting of the Network Site Specific Group for Lung Cancer (25/10/2007)

                                                                  ACTION POINTS

        Agenda Item                                          Action Required                                     Deadline   Named person

3.3 Succession planning      Liaise with RCHT to identify potential candidate for Service Improvement role                   Nick Withers

3.4 Research &               Contact all Lung MDT Leads to remind them of requirements for research                          Nick Withers
development                  measures and to identify an MDT research representative
                             Research & Development to be added to next meeting agenda                                      Samantha Maher

4.1 Care pathways            Liaise with Jonathan Taylor, PHT Service Improvement Facilitator to complete                    Philip Pearson
                             PHT pathway
                             Amend RDE pathway                                                                               Nick Withers

7 Patient representatives    Look at reviving patient satisfaction survey across the Network involving JS and                Nick Withers
                             HW to review content prior to circulation

8.1 Mesothelioma patient     Email Kate Lansdell to request details on progress and feed back to next meeting                 Sue Pascoe
information packs

9.1 Current audit activity   Sleeve resection      Follow-up draft pro forma with surgical representatives and               Nick Withers
                             request suggestions for alternative audit topic if agreement cannot be achieved
                             Non small cell lung cancer   report findings at next meeting

9.3 Audit planning           Circulate mesothelioma information to group members                                            Penny Hodgkiss
                             Tim Howells to liaise with Penny Hodgkiss about LUCADA and mesothelioma data                     Tim Howells

10.1 Molecular pathology     Correspond with Simon Rule, Network Medical Director to flag up this development                Nick Withers


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