DRAFT SCAN Haematology Group Wednesday 23 rd May 2012 Telepresence Room, Western General Hospital, Edinburgh with videolinks to Borders, VHK and St John s MINUTES Present Sandra Bagnall Liz Brown Mira Farquharson John Goodlad Rosie Jones Kate Macdonald Sheena Mackenzie Peter McDade Lorna McLintock Angus Ogilvy Ashok Okhandiar Anne Robertson Huw Roddie Fiona Scott (Chair) Peter Williamson Gillian Wilson Apologies Alison Allen Carolyn Bedi Archana Chankeshwara Kerri Davidson Belinda Hacking Simon Jackson Martin Keith Brenda Peek Steve Rogers John Tucker Frances Yuille SCAN Patient Involvement Manager Haematology Clinical Nurse Specialist, NHS Lothian Consultant Pathologist, NHS Lothian (St John s) Network Manager, SCAN SCAN Groups and Communications Co-ordinator Patient Participant Patient Participant Consultant Haematologist, NHS Borders Data Manager, NHS Lothian Senior Charge Nurse, NHS Fife SCAN Audit Manager Consultant Oncologist, ECC Haematology Data Manager, NHS Lothian Consultant Clinical Psychologist, NHS Lothian Consultant Radiologist, NHS Lothian Senior Cancer Information Officer, NHS D&G Associate Specialist, NHS Lothian Consultant Haematologist, NHS Borders Consultant Oncologist, ECC A full list of members is available on www.scan.scot.nhs.uk SCAN Office, Pentland House, 47 Robb s Loan, Edinburgh EH14 1TY Tel: 0131 465 7682E: sheena.mackenzie@nhslothian.scot.nhs.uk W: www.scan.scot.nhs.uk Page 1 of 5
Item Action 1 Minutes / Matters Arising The minutes of the meeting on 27 th February 2012 were approved. Matters arising: Clinical Management Guildelines It was agreed that the clinical management guidelines for AML, and Myeloma should be circulated by email and that, provided Huw Roddie received no significant comments/objections by Fri 31 st May, these should be published on the Haematology Intranet. Action: Sheena Mackenzie to circulate CMGs for AML, and Myeloma for review. [Done] Sheena Mac 2 Wider SCAN Issues Kate Macdonald updated the Group on a national and regional developments: Chemotherapy CEL The revised chemotherapy CEL (Chief Executive Letter) is due to be published in August. An implementation lead will be appointed in each board area. Kate offered to share the draft CEL with anyone who would like to see it. Transforming Care After Treatment (TCAT) The programme for TCAT has not yet been finalised but is likely to include a review of follow up protocols and practice. Chemotherapy Electronic Prescribing and Administration System (CEPAS) Kate anticipated that CEPAS would be live for haematology by August. Brenda Peek s work on reviewing the haematology protocols for Lothian was commended. It was noted that it would be up to the other SCAN boards to decide whether to adopt or adapt the Lothian protocols. Sandra Bagnall gave a brief demonstration of the refreshed SCAN website (www.scan.scot.nhs.uk) and invited Group members to look at the site and send any feedback to herself (sandra.bagnall@nhslothian.scot.nhs.uk) or Sheena Mackenzie (sheena.mackenzie@nhslothian.scot.nhs.uk). She also encouraged Group members to promote the site to colleagues and patients. Action: Group members to review SCAN website, send any comments to Sandra/Sheena and promote the site to colleagues and patients. 3 Haematology Issues Patient Issues Tailored Information for Patients in Scotland (TIPS) Angus Ogilvy advised the Group that the aim of the Tailored Information for Patients in Scotland (TIPS) project was to make it possible to provide Page 2 of 5
information tailored to the circumstances and information preferences of individual patients. A Project Manager, Uzma Aslam, had been appointed to work on two prostate cancer pilot projects in Lothian and Dumfries. It was noted that haematology services in SCAN did not have CNSs who could pull together the tailored information for patients and that this might need to be done by staff in the Macmillan Information Centres. Patient Survey Lorna McLintock advised the Group that all the VHK questionnaires had been handed out and that only a few remained to be given out at QMH. Sandra Bagnall said that she had had a meeting with Rosie Jones at which it had emerged that some work had been done in West Lothian as part of the Patient Experience Programme which was similar in nature to the haematology questionnaire. She said that she was exploring whether the information from the Patient Experience Programme might be shared with the Haematology Group. Haematology MDM Fiona Scott highlighted the IT challenges faced by the regional haematology MDM in relation to linking multiple sites and accessing scans in a timely fashion. She suggested that Lothian participants might move to a different room to see whether this would improve matters. Group members discussed the provision of feedback for GPs from the MDM. Fiona Scott said that there were plans in Lothian to send GPs the MDM summary sheet with the definitive plan. Lorna McLintock said that colleagues in Fife would discuss whether to adopt a similar approach. Fiona agreed that a separate GP letter would be ideal but this was not possible given current resource constraints. Molecular Pathology Diagnostics Fiona Scott advised the group that she was a member of a national group charged with reviewing the provision of molecular diagnostics. She said that the Group was looking at current provision and would then move on to look at how services could continue to be provided in an appropriate and timely fashion in future. John Goodlad said that he hoped that current work underway to locate Haematology immunophenotyping and molecular diagnostics within the WGH Pathology department would lead to more efficient use of samples and facilitate the development of a single combined pathology report. Fiona Scott raised some concerns in relation to the fact that at present Dr Goodlad is the sole pathologist with specialist haemato-oncology expertise within Lothian. Discussions are ongoing as to how best to address this and the Group felt that it was important to highlight the key role played by a timely and accurate diagnostic pathway in ensuring optimal patient management. The consensus view was that was a need for robust backup / support for diagnostic haemato-oncology. Page 3 of 5
Non-SMC Drugs Fiona Scott noted that the lack of a cancer drugs fund in Scotland, similar to the one in England, placed Scottish patients at a disadvantage in relation to access to cancer drugs not approved by the SMC (Scottish Medicines Consortium). Huw Roddie reported that the Cross Party Group on Cancer would be discussing this issue at a meeting on 6 th June and the Scottish Conservative Party had called on the Scottish Government to set up a cancer drugs fund. Lothian s Medical Director was to be invited to attend the Lothian Medicines Management meeting in August when group members intended to express their support for the development of a Scottish cancer drugs fund. Teenagers and Young Adults Liz Brown reported that work to implement the action plan was proceeding well. It was noted that a Cancer Plan for Children and Young People had been published which contained proposals to develop services appropriate to the needs of teenagers and young adults up to the age of 25. The MSN is also planning to establish a national MDM for young people between the ages of 16-25. Kate Macdonald said that the MSN would welcome input from someone from the adult haematology service in developing the national MDM. One of the key recommendations from the group was the need to optimise access of young adults with cancers to clinical trials. At present, the lack of clinical trials support at St John s and in Fife restricts access to national clinical trials in all age groups and would make it difficult for SCAN to meet this recommendation. Action: Sheena Mackenzie to circulate Cancer Plan for Children and Young People. [Done] Sheena Mac Survey of Older Patients with Haematological Malignancies Fiona Scott reported that she and Brenda Peek had linked up with a Geriatrician to develop a tool to assess the needs of older patients with haematological malignancies prior to and after their treatment. The aim would be to identify the resources required to provide ageappropriate supportive care for this group of patients. Fiona said that the Oncologists were also interested and she hoped the assessment tool could be piloted in Ward 1. Colleagues from other boards expressed an interest in using the tool locally following the pilot. 4 Any other business Audit Staffing It was noted that approval had been secured to appoint a replacement for Christine Maguire and that the necessary recruitment processes were underway. National Haematology Networks Meeting It was noted that the National Cancer Quality Programme included a requirement for national network meetings and reporting of audit results every 3 years and that Page 4 of 5
haematology had been offered the option of a national meeting, supported by ISD, in 2013. Fiona Scott said that it might be sensible to combine the national networks meeting with the Scottish Haematology Society s annual meeting, which was usually scheduled for November. Patient Representation Peter McDade said that he was stepping down from the Group as he was about to move to France. On behalf of the Group, Fiona thanked Peter for his considerable input and wished him well. Frequency of Meetings Fiona Scott suggested that, from 2013, SCAN Haematology Group meetings might be held 3 times per year, alternating between Mondays and Wednesdays. She asked colleagues to send any comments on this proposal to Sheena Mackenzie. Action: Group members to send any comments on the proposal to hold SCAN Haematology Group meetings 3 times per year, alternating between Mondays and Wednesdays, to Sheena Mackenzie (sheena.mackenzie@nhslothian.scot.nhs.uk) by 15 th June. 5 Future meetings Meetings will alternate between Mondays and Wednesdays. Mon 3 rd Sept 2012 Wed 21 st Nov 2012 Start time: 4.00pm (or 4.15pm if Fiona Scott is teaching) Locations: Western General, Edinburgh, VHK, QMH, BGH and St John s. Page 5 of 5