THYROID NSSG Wednesday 29 February 2012, 2:00pm Evolve Business Centre, Houghton-le-Spring

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1 THYROID NSSG Wednesday 29 February 2012, 2:00pm Evolve Business Centre, Houghton-le-Spring M I N U T E S Present: Kate Farnell, Patient Thyroid Cancer Advisor, Butterfly Trust KF Sarah Johnson, Consultant Pathologist, Newcastle Hospitals SaJ Sue Jones, Consultant Endocrinologist, North Tees & Hartlepool SuJ Ujjal Mallick, Chair, Lead Clinician Thyroid, Newcastle Hospitals UKM Julia McBride, Speciality Doctor Clinical Oncology, South Tees JMcB Sath Nag, Consultant Endocrinologist, South Tees SaN Stewart Pattman, Specialist Registrar Chemical Pathology, Newcastle SP Bill Richardson, Cancer Modernisation Manager, NECN BR In Attendance: Ann Bassom, Network Coordinator, NECN ABa Apologies: Seb Aspinall, Consultant Surgeon, Northumbria Healthcare SA Wael Elsaify, Consultant Endocrine Surgeon, South Tees WE Debra Milne, Consultant Histopathologist, Sunderland DM Petros Perros, Consultant Endocrinologist, Newcastle PP Jo Preston, Service Improvement Facilitator, NECN JP Suzanne Thompson, Cancer Modernisation Manager, NECN ST Mike Williams, Consultant Surgeon, North Cumbria MW Bridget Workman, Research Manager, NCRN North BW 1. INTRODUCTION a. Welcome & Apologies UKM welcomed everyone to the meeting. Introductions were made and apologies were noted as above. b. Previous Minutes 30/11/11 The previous minutes were confirmed as a correct record of the meeting. UKM referred to the peer review visit last November and noted it had gone well. c. Action Points from Previous Meeting Radioactive Iodine Treatment update on upper age for pregnancy testing UKM updated on discussions and noted that it was up to individual Trusts to set the age limits and assumed that this was similar in all Trusts; however this would appear not to be the case. In Newcastle it is from 11 to 55 years. KF noted variations in practice across the country. SaJ suggested it is aligned with existing guidance that states 2 years after last period when it is considered unnecessary to continue contraception. The group recommended an age limit of 11 to 55 years unless the woman is still menstruating. 1

2 A question of testing was discussed. SaN agreed to discuss locally regarding appropriate testing and when samples are batched. SaN NSSG Chair update on expressions of interest UKM reported that it is expected that the vice chair SaN will take up the position of the chair under normal circumstances. Dr Branson, NECN Medical Director, would contact SaN for a supportive discussion in the light of the existing heavy commitments of SaN at the Trust level. There will need to be discussions at Trust level (South Tees NHS Foundation Trust) if SaN was to take up the post. SaN will discuss this with senior colleagues within the Trust once he has been approached by Dr Branson. 2. SPECIFIC ISSUES ARISING a. Harmonisation of Radiotherapy Protocols BR highlighted cancer standards which require the network to produce a handbook of approved radiotherapy protocols. The network was criticised at the last peer review visit for not having evidence of greater uniformity regarding radiotherapy protocols and suggested the guidelines reflect the generality of practice within the network to accommodate the new NICE guidelines. BR confirmed that colleagues at the 3 radiotherapy centres in Newcastle, Middlesbrough and Carlisle have started the review process using an online tool (Webex) which allows participants to work on the same document at their own PC. BR suggested the clinical oncologists for thyroid cancers across the sites can share their protocols to identify any variances. However UKM mentioned this has already been discussed before Peer Review and harmonised protocols are in place for RT for thyroid cancer; but for chemotherapy and other future protocols Webex will be very helpful and will be used as required. WeBex online conferencing BR gave a brief outline of the Webex online tool which allows participants to work on the same document at their own PC. Members were asked to contact for further information. BR noted that the NECN website is currently under review. b. Feedback from Awareness Campaign KF gave the following key points from the neck check clinic held in September 2011: - Around 970 people had their necks examined. This response was considerably more than anticipated. - Learning outcomes included that it would be useful to record names - The number of out of area contacts are difficult to follow up. 2

3 - Ultra-sound was a pressure point. - Difficulties with the way the event worked out - Suggestion to ensure it is an awareness raising campaign and not a screening programme. However, there is no doubt that it successfully raised public awareness. BR reported that Linda Wintersgill, Network Information and Audit Manager, has offered to look at data to see if there were any increase in referrals which was welcomed by the group. BR KF informed members that a patient information film is to be produced this year with an aim to coincide the launch with the Thyroid Cancer Awareness event in September. c. Saving 1,000 lives - suggestions BR reported on the major drive that is taking place across the North East and North Cumbria to raise awareness of the signs and symptoms of cancer and encourage people to go to their GPs at the earliest opportunity to give them the best chance of successful treatment. At an Accelerated Solutions Event held last April there were strong messages that for maximum impact there was a need for sustained, high profile publicity about the signs and symptoms of cancer and about the benefits of early presentation. The theme for the event was saving 1,000 lives and each NSSG is asked to identify their top 3 priorities to support this initiative. The group discussed what the priorities would be for Thyroid cancers and acknowledged that early diagnosis is key. SN highlighted that clear referral guidelines are essential and suggested developing and rolling out a fast track referral pathway including the specialist Thyroid Cancer MDT. The group agreed that educating primary and secondary care colleagues was also important. 3. CONSENSUS DISCUSSION OF COMPLIANCE WITH INDIVIDUAL MEASURES a. Key Documents Clinical Guidelines - BTA - IMRT - Chemotherapy - Calcium Management UKM reported that PP has been asked by the BTA to revise the national thyroid clinical guidelines It was noted that IMRT is available in Newcastle and South Tees but there is a limited service in Carlisle. The group noted that the tomotherapy section has been updated and the chemotherapy section will be amended by a small working group. Updated guidelines regarding calcium management will be available in the near future. 3

4 Annual Report - Lymph Node Surgery Members were asked to forward any further comments regarding the annual report to UKM referred to the controversy surrounding low volume surgeons performing lateral neck node dissections. Endocrine surgeons perform central node dissections but not all of them perform selective lateral node dissections for thyroid cancers, if required, on a regular basis compared to Head and Neck surgeons. The peer review process Is keen to restrict surgery in the hands of High Volume surgeons., UKM to enquire from the local surgical leads and rediscuss this with SaN ALL UKM Constitution - Configuration of Services Further comments to be forwarded to ALL Work Programme - PR Feedback UKM reported that there were 4 points raised in the feedback and the group noted these had largely been addressed. SaN reported that peer review had gone very well in South Tees where they achieved 81% compliance. The group discussed patient representation. KF agreed to take this forward. KF UKM noted that the Newcastle MDT plans to move to weekly MDTs and for future consideration there may be the possibility of the South Tees MDT linking with Newcastle. SaJ highlighted that a pilot of BRAF testing is underway and there may be a possibility of using the information in a clinical setting in the future. UKM noted that the network is the first to have the Beckman Assay available and SP tabled some information. UKM noted that the clinical network would be happy to support the bio-chemistry network in terms of the Beckman Assay. The group noted the algorithm included in the tabled information noting the opportunity to access ICE across the network. Members were asked to forward any comments to SP. KF offered to support the production of suppression cards. ALL KF UKM noted the availability of PET CT scans in suitable cases of thyroid cancer across the network. 4

5 b. Key Achievements / Key Challenges As stated in the annual report with the addition of forthcoming clinical trials and the neck check clinic as key achievements. AB to feedback to Carol Mayes. AB 4. AUDIT PROGRAMME a. CWT Audit BR reported that the Network has completed an audit of cancer waiting times for 2010/11 this is a re-run of the timeline analysis previously presented and used in the ideal pathways. It was agreed to circulate the audit with the minutes. Enc b. Other Audits JMcB agreed to liaise with RB to progress previously discussed audits. BR requested that the network proforma is completed which also includes how to access audit funding. JMcB/ RB/PP /UKM PP has sent a draft Audit proposal to the MDT for consideration. Other proposals can be submitted. 5. RESEARCH a. Clinical Trials Recruitment Report The group noted the portfolio and recruitment report circulated with the agenda. UKM referred to a clinical trial that PP is running (Biosignatures) and also setting up another one involving Molecular tests on FNA. b. Programme of Improvement The Research networks will provide recruitment data to all MDTs in order that the MDT s submit there own proformas to the NSSG for review in line with Peer review Programmes for Improvement. 6. CLINICAL GOVERNANCE ISSUES There were no issues raised. 7. SERVICE USER INVOLVEMENT PROGRAMME a. Network Service User Partnership Group (NSUPG) The group noted the following update from the Network Patient and Carer Manager: - Cancer Peer Review Measures launched for service users summer North of England Cancer Network has recruited over 600 service users who wish to be involved with the network. Level of involvement 5

6 varies from attending meetings to being involved in document consultations and questionnaires - Peer Review measures specific in membership of the NSUPG - Interim group meetings Jan and March service users from each locality are represented - Meetings planned for Feb and March to meet service users who have signed up to be involved with the Network - Currently mapping what groups exist in each locality - 2 representatives from each locality will feed into the NSUPG - Chair and Vice chair will be appointed for the NSUPG which will meet 4 times a year - Recent peer review visit highlighted need as Network to ensure that we have correct representation of service users on each NSSG - NSUPG at last meeting agreed that best practice is for all service users who sit on NSSG s to have signed up to the Networks database Further information on the NSUPG to be forwarded to KF. BR b. Patient Satisfaction Survey KF reported on a national survey and agreed to circulate to the group KF 8. ANY OTHER BUSINESS There was no further business. 9. CLOSE OF MEETING a. Schedule of Meetings It was agreed to schedule an education element 1 hour before the start of the next meeting. Wednesday 30 th May 2012, 1:00pm, Evolve Business Centre Wednesday 28 th November 2012, 2:00pm, Evolve Business Centre AB b. Review of Minutes and Sign Off UKM and SN agreed to review the minutes prior to circulation. UKM/ SaN 6

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