Meeting of the SWAG Network Haematology SSG

Transcription

1 Meeting of the SWAG Network Haematology SSG Tuesday 21 st November 2017, 14:00-16:30 Penny Brohn Cancer Care, Chapel Pill Lane, Pill, Bristol, BS20 0HH This meeting was sponsored by Celgene and Novartis Chair: Dr Deepak Mannari (DM) NOTES (To be agreed at the next SSG Meeting) ACTIONS 1. Welcome and apologies Please see the separate list of attendees and apologies uploaded on to the SWCN website here. 2. Living with and beyond cancer 2.1 Implementation of the recovery package Presented by Catherine Neck (CN) The risk stratified lymphoma guidelines, circulated prior to the meeting, had been amended according to advice from lymphoma fellow Karan Wadhera and feedback from CNS teams in the region. They reflected the fact that the majority of remissions were most likely to occur within the first 2 years of treatment. Clinicians in Bristol and Weston had been using the pathway for patients who were able to self-monitor for signs and symptoms, and this seemed to work well to safely reduce follow up. It was recognised that there would always be a cohort of patients who would not be suitable to discharge to self-monitoring. The most important factor is to ensure that there is rapid access back into the service should signs and symptoms be identified by the patient; GPs should be aware of the process to enable this. The pathway will be recirculated for further comments aiming to reach a consensus across the region by the 2 nd week in December. CN/ It would be helpful if the clinical team could verify where it may, or may not, be appropriate to streamline follow up of other haematology disease areas so that this evidence is available should commissioners propose streamlining the service. In the opinion of the user representative member, it is important to clarify the potential late effects from treatment and have capacity to gain access back into the service when required. Patients may also wish for a regular follow up schedule for social reasons. It is important to manage patients expectations of the pathway from the outset; Page 1 of 5

2 patients have reported feeling very reassured when reaching the point where they can be discharged from regular follow up. 3. Review of previous meeting s notes and actions The last meeting was held prior to the annual lymphoma education event in March to consolidate the time spent travelling and attending external meetings. This will be repeated in March from 2:00-4:30 to ensure that there is sufficient time between the meetings. Notes: As there were no amendments or comments following distribution of the notes from the meeting on Wednesday 3 rd March 2017, the notes were accepted. Actions: A date for a research break-out meeting will be decided prior to the next SSG meeting. Funding for the chemotherapy protocol work will continue until the end of March Continued funding after this period will need to be clarified. A direct link to the GP guidelines will be circulated; they were difficult to locate from the home page of the SWCN website. Use of the guidelines on the website had increased since the suspected cancer referral form had been published, and will continue to be monitored. The MDT in Musgrove Park had reviewed the CRUK MDT effectiveness report again since the last meeting. The MDT was currently overloaded with discussion of every patient at each stage; this was not considered the best use of MDT members time, in particular for radiologists. Ideally the provisional MDT list should be checked prior to the meeting to ensure that all necessary information is available. Points in the treatment pathway where an MDT review was required could be agreed, and radiology and pathology specialist sections could be arranged so that there was no need for these MDT members to stay for the duration of the meeting. Professor Martin Gore has been tasked with transforming the work of cancer MDTs and had circulated a proposal about this work; this will be recirculated to the regional MDT Leads. Some interim scans could be reviewed outside MDTs, but a safety net would be required to ensure that no one was missed and this would need to be audited every three months. Listing scans for MDT discussion was sometimes used as a method to get the scan rapidly reviewed; radiologists should be informed about how this plan could have the potential to reduce their MDT attendance time. Teams were implementing some of the recommendations from the virology audit presented at the last meeting. The team in Gloucestershire had a system to flag up when to test for Hepatitis, but didn t have the same system for HIV; Richard Lush Page 2 of 5

3 will investigate how this can be amended. RL 4. Chemotherapy protocols update Please see the separate table of protocols, for update, circulated with the notes. Bisphosphonate Guidelines for the BHOC had been circulated for potential agreement across the network; all present agreed to adopt the guidelines. It was decided that the transplant protocols did not need to be available on the website. The word indolent had been removed from the lymphoma section on the website. The hairy cell leukaemia section could also be removed. 5. Patient experience Agreed 5.1 National Cancer Patient Experience Survey (NCPES) results and CNS update Presented by Sian Middleton / CNS team The NCPES 2016 results, posted to inpatients and day case cancer patients between April and June 2016 and published in July 2017, were reviewed in comparison with the national average and 2015 results. Results had not been published for Yeovil as less than 21 responses were received. Some of the results were marginally worse than the year before, and some were marginally better. There were also results attributed to haematology services that were actually related to oncology. The relevance of the survey was questioned; results were always a year behind the current service so it was difficult to draw any conclusions. It was decided that it would be more useful for each CNS teams to identify 3 priorities for improvement for a more focussed discussion at a future meeting. CNS teams Results of the NCPES can be useful to use as evidence in business cases for the CNS workforce when related results are low. The question has anyone asked you whether you would like to take part in cancer research? was considered confusing as this would not be discussed with patients if there was not a relevant trial available. Lead Cancer Nurse Ruth Hendy has written an article on how to interpret the NCPES results which will be circulated. The patient experience support group in Taunton provides patient experience responses with far more value. Page 3 of 5

4 6. Quality indicators, audits and data collection 6.1 Network audit ideas Results of the virology network audit have been circulated to SSG members and the Cancer Service Managers. Nik Chavda and Andrea Preston are currently doing a retrospective analysis of the efficacy of Colesevelam at BHOC for Lenalidomide induced diarrhoea. SSG members who are interested in contributing data should andreadahlgren@hotmail.com or call Further audit ideas: Provision of end of treatment summaries; Sophie Otton (SO) will produce an audit proforma and the project will be launched at the next meeting Use of Bisphosphonates and dental health reviews Intrathecal CNS prophylaxis for high grade lymphoma; Chris Knechtli (CK) will produce an audit proforma, to be completed with 6 months of retrospective data, for circulation prior to the next meeting Two week wait referral conversion rates 3 months pre and post publication of the new suspected cancer referral forms will be undertaken by Cancer Manager Zena Lane (ZL) Regional use of REVLIMID; Helen Dunderdale () will submit signed data sharing agreements to Celgene. SO? CK ZL It was noted that the following sentence on the new suspected cancer referral form: A polyclonal (diffuse) increase in gammaglobulin is not associated with haematological malignancy, should be amended to: A polyclonal (diffuse) increase in gammaglobulin is not associated with myeloma. The link to GP guidelines should also be amended to state: Please access the GP guidelines for frequently asked questions. The BNSSG have removed the serum free light chain assay (SFLCA) from the form and replaced this with urinary Bence-Jones protein, as SFLCA is not available in the North Bristol Trust laboratory. It should be made clear that the test is available elsewhere in the region. The issues will be fed back to the CCGs who plan to review the forms in approximately 6 months time. 6.2 Clinical trials update Presented by Helen Dunderdale Research Delivery Manager for the West of England Clinical Research Network, David Rea (DR), has sent his apologies and supplied a presentation on the research activity across the region. Page 4 of 5

5 The recruitment target per 100,000 population for haematological malignancies is 7; this will increase by 10% year on year. Recruitment to date had already exceeded the 2017/18 target. The reason for the 10% increase, and if the recruitment figures relate to the adult service or are combined with recruitment from the paediatric oncology team, will be established. /DR SSG members can contact DR if they would like to undertake training on use of the online resources for research; links to these are available in the presentation. Information on open trials including eligibility criteria will be made available on the SWCN website for review within the MDT. The list of trials in set-up is to be checked for completeness as there is often a time lag between submitting an interest in setting up a trial and the NIHR knowing about it. It would be helpful to have an estimated opening date on the list. A simplified process was required to avoid local duplication when translating trial protocols into standard operating procedures for pharmacists and local teams to interpret. This will be raised with the clinical research network. DM/ 7. Clinical guidelines Algorithms of treatment pathways will be produced for each disease type; a Hodgkin s Lymphoma pathway has been drafted. Novartis have offered to assist with formatting these once the content has been decided. This will be included in the Work Programme. Following the biennial review of the SWAG Clinical Guidelines, the content had been reduced from a 60 page document to 12 pages, now containing links to all relevant national guidelines. The new format was agreed, and the link to the document, found here, is to be saved to SSG members bookmarked web pages. DM/ Agreed 8. Any other business AP has escalated the issue of non-medical prescribers not being able to complete prescription authorisation forms for IMiDs to the National Medicines Optimisation Group, who are actively working on this. It is not clear how many other centres have nurses or pharmacists who are affected; the group will be kept updated of any changes with the MHRA and the SSG could further escalate the issue. The Teenage and Young Adult (TYA) fertility sparing/preservation pathway needs to be clarified. Musgrove Park is no longer able to refer patients to Exeter and the fertility service at Southmead Hospital has recently been decommissioned. The RUH currently refer patients to Oxford. Consultant Paediatric Oncologist Rachel Dommett will be contacted to seek clarification. AP DM/ Access to blood volume testing varied across the region and has nearly been phased out; Birmingham and Plymouth are thought to be able to offer the service. Date of next meeting: Wednesday 7th March 2018, The Castle Hotel, Taunton. Page 5 of 5