Breast Tumour Site Specific Group 21 st June East Malling Conference Centre, East Malling Final Meeting Notes v 1.

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Breast Tumour Site Specific Group 21 st June 2016 9.00-12.30 East Malling Conference Centre, East Malling Final Meeting Notes v 1.0 Present Initials Title Organisation Haresh Devalia (Chair) HD Consultant Breast Surgeon Maidstone & Tunbridge Wells Hospital (MTW) Sylvia Hurley SH Clinical Nurse Specialist Darent Valley Hospital (DVH) Ibrahim Ahmed IA Lead Clinician Medway NHS Foundation Trust (MFT) Delilah Hassanally DH Consultant Surgeon MFT Rupika Mehta RM Breast Consultant Radiology MFT Hester Noon HN CNS Breast MFT Abdul Kasem AK Consultant Surgeon MFT Julia Hall JH Consultant Clinical Oncologist MTW Natasha Mithal NM Consultant Clinical Oncologist MTW Vanessa Potter VP Breast CNS East Kent Hospital University Foundation Trust (EKHUFT) Deepika Akolekar DA Locum Consultant Surgeon MTW Rema Jyothirmayi RJ Consultant Clinical Oncologist MTW Susan Green SG Macmillan Breast CNS MTW Hayley Tillett HT Macmillan Breast Radiographer Site Specialist MTW Julie Oakley JO Macmillan Breast Radiographer MTW Jennifer Glendenning JG Consultant Clinical Oncologist MTW Sarah Horn SHo Locum Consultant Breast Surgeon MTW Maher Hadaki MH Consultant Oncologist MTW Rebecca Spencer RS Breast Care Nurse EKHUFT Christine Howarth CH Patient Representative Terence Gage Cancer Information Analyst Kent & Medway Cancer Collaborative (KMCC) Sue Whitehead SW Macmillan Project Manager KMCC Natalie Aluwalia Service Improvement Facilitator KMCC Rosie Baur RBa Cancer Services Manager KMCC Katy Palmer (notes) KP Admin Support KMCC Sally Allen SA Head of System-wide Commissioning West Kent CCG Russell Burcombe RB Consultant Oncologist MTW Lesley Boast LB Macmillan Breast Care Nurse Specialist Kent Institute of Medicine & Surgery (KIMS Hospital) Stefano Santini SS GP Clinical Lead Consultant West Kent CCG Apologies 1 of 6

Margaret Matthews MM Consultant Obstetrician and Gynaecologist MTW Sam Rose SR Patient Involvement Coordinator KMCC Pam Golton PG Breast Care Nurse EKHUFT Aurea Ellis AE Breast CNS MTW Robert Horsley RH Consultant Anaesthetist MTW Sarah Moorhouse SM Consultant Radiologist EKHUFT Rachael Liebmann RL Breast Pathologist / Deputy Medical Director Queen Victoria Hospital (QVH) Penny Price PP Breast Care Nurse Specialist EKHUFT Charlotte Abson CA Consultant Clinical Oncologist MTW Jan Hackney JHa Breast Care Nurse Specialist MTW Michelle Jee MJ Project Manager Medway CCG Vikki Baker VB CNS EKHUFT Jennifer Weeks JW Breast Physician MTW Louise Housten LH Breast Care Nurse EKHUFT Louise Barker LB Breast Care Nurse EKHUFT Catherine Harper- CHW Consultant Medical Oncologist MTW Wynne Elizabeth Sharp ES Consultant Surgeon EKHUFT Debbie Pyart DP Commissioning Project Manager Swale CCG Carys Thomas CT Consultant Oncologist EKHUFT Maudie Vanden Berghe MVB Patient Representative Linda Caine LC Cancer Compliance Manager MFT Fiona Andersen FA Clinical Nurse Specialist MTW Barbara Mercier BM Research Delivery Manager NIHR Kent, Surrey and Sussex Claire Ryan CR Macmillan Nurse Clinician MTW Description Discussion Agreed Action 1) TSSG Meeting: Apologies: - As above Notes from previous meeting: - Russell Burcombe updated the group on the Kings Oncology referral process. He feels there has been a communication issue. RB has been sending the referrals to Andreas and then taking them to the MDT meetings. He has personally been having a bad experience with referrals and believes the Pathway is not running smoothly. to send RB document from Kings for RB to agree following the meeting in January. 2) Network Updates: Strategic Clinical Networks (SCN) update provided by N.Aluwalia (Draft work plan will be circulated): - SCN has been under consultation and this is now complete. They have been given a new to send document to RB KP to circulate the work plan. KP 2 of 6

3) InfoFlex & Data Completeness Update: 4) TSSG Documentation Review: structure, they are now hosted by NHS England. Their work priorities include Early Diagnosis and Living with and Beyond Cancer. - Alliances are being developed and there have been discussions on developing the footprint of the alliances for our region, it is likely to be Kent & Medway although unconfirmed submission of the structure is to be by September 2016 with established Cancer Alliances by March 2017. Presentation by Terence Gage () attached: - We are currently advertising for a Band 5 InfoFlex Development Analyst, interviews will be taking place in the next couple of weeks. We have recruited for a Band 6 Clinical Information Systems Manager, Jane Woolford is due to join the team on the 1 st July 2016. Both roles will assist with moving forward Infoflex changes that are required. - presented the staging data from the National Cancer Registration Service for all patients diagnosed per Trust between January April 2015 and also January April 2016 to compare the data. - The data taken from InfoFlex and NCRS are both incorrect but was aware of this and is looking into where the missing data is. - explained he is creating a user guide for all MDT Co-Ordinators and they will also need to go on a training course. This is a WebX training session to ensure all staff know exactly what to enter and where to enter data. will circulate the user guide once this has been completed. - HD stressed that he understands the data entered at MDT is 100% correct so believes there is definitely an issue with submission. - explained he has met with the provider of InfoFlex (CIMS) to look at some options to improve the system. We have signed until March 2018 with InfoFlex but we are exploring options in terms of different systems Somerset seems to work well and they presented at the TOSG meeting on the 20 th June 2016. - The group discussed whether it would be possible to link the audits to the KMCC website, will link this. - Christine Howarth questioned if secondary breast cancer was included in the data. was unable to check at the meeting but will email HD to advise. Breast 2ww SCN Template Review: - The group discussed the new 2ww referral form and agreed there are some really helpful sections, the new template incorporates NICE NG12 Guidance. - West Kent are planning to have an educational meeting regarding Cancer pathways for GPs. - The group agreed to keep the original form but add in the below sections - Patient Engagement and Availability - Clinical Details to update to group at the next meeting to circulate user guide. to link audit to website to email HD to amend and circulate for CCG 3 of 6

- Non Urgent aged >30yr - All agreed that it is important to keep the diagram on the original form. ratification 5) Patient Engagement Review Update: Breast High Level Operational Policy: - The group discussed the changes that need to be implemented in this policy. - has agreed to amend the below and circulate: - Section 2 table (change Maidstone to MTW) and add in East Kent. - Section 3 to advise Sue Green on User Lead role and also add the Vice Chair in this section. - Section 6 to change the website link and to clarify with. Update provided by Sue Whitehead: - Exciting time for the Partnership. - At the last meeting we explained how we are reviewing our Partnership between patients, carers, NHS staff and voluntary sector services which until now has been based entirely on attending meetings held 3 times a year on 3 sites (Medway, Maidstone and Canterbury). - The questionnaire was one element of the on-going process of the Review. Had over 100 responses. Thank you to those who completed the questionnaire. - Macmillan funded a full day workshop in April which was well attended from across Kent & Medway and had a good mix of patients, carers etc. - We are changing the logo and the name of the Partnership, this has been agreed by the Chairs and Vice Chairs. New name is Cancer Action Partnership. - Keeping the current structure of meetings and venues as this is working for the existing members however all meetings will be open up for all members to attend. We have been working with community groups, support groups and stakeholders. We are also looking into video conferencing meetings for the people who cannot physically attend these meetings. to circulate policy to advise SG Update to be provided at the next meeting SW 6) Follow Up Project Discussion: Next Locality meetings dates:- West Kent Locality Meeting Maidstone Hospital, Wednesday 6 th July, 12noon-2pm East Kent Locality Meeting K&C Hospital, Friday 15 th July, 12noon-2pm - The Central Working Committee met on the 10 th January to discuss various pathways and protocols and the next steps for this project. - HD contacted The Royal Marsden Hospital to find out what they did with regards to CCG input. They decided to make the change and proceeded to do so, there was no funding issue. Within Kent & Medway the local needs differ and follow up is according to stratification risks. Breastcare.org are effective in all areas currently. - HD advised that there was a meeting this morning and congratulated Sue Green on the fantastic job she has done on leading this project. SG updated the group that she is currently writing a Business Plan, it has been agreed to have a Risk Stratification with Multi-Disciplinary group. 4 of 6

7) Breast Reconstruction MDT Presentation: 8) Network Wide Audit Update: - The pathway is being developed and will be gaining a patient perspective via Christine Howarth ensuring safety and recall of patients at correct times. - One issue is they do not have a system where patients get recalled after a year but they are looking into computer programmes that will do this automatically. - The group is in agreement for having a separate follow up Pathway for patients to enhance their experience. After HD spoke to the Business Manager they confirmed that instead of this being completed at CCG level this should be carried out at Trust Level. - Sylvia Hurley explained to the group that they have a new Consultant who is very keen to look at follow up procedures and see how they can move forward. They are unsure if there will be any other staff recruited for due to the financial status. Sue Green agreed to present in the meeting in October and is happy to share information with the other Trusts for local plans. - RJ explained to the group that Breast Cancer.org fund the programme for patients who have just finished their treatment. These programmes happen 4 times a year, there are generally around 15-20 patients attending. Rema agreed to forward the information out to Sylvia Hurley. - RJ and SG are a part of The Kent Oncology Survivor Group and they have started to run Health and Wellbeing Forums, they recently met for the first time. All are welcome to attend. - Russell Burcombe discussed that not all patients should be approached at 5 years, a few would not like to come back for a follow up meeting. - The group discussed local arrangements and agreed a fail safe is needed to be established if there is no longer going to be a surgical follow up and a guidance is to be established for Kent & Medway for extended Adjuvant Tamoxifen at 5 & 10 years. This is to be discussed at the next meeting. Deepika Akolekar presented to the group (a copy available upon request): - DA advised the group of the Oncoplastic Multidisciplinary Meetings and what they have developed and also what is available in the region. - DA has adopted and set up an Oncoplastic MDT. The results are showing these improve patient care and modify the Surgical Plan in 30% of cases. - In the presentation DA explained that the majority of patients did not need to see a plastic surgeon. - Going forward the Oncoplastic MDTs will help make the Oncoplastic Surgeons decisions. DA agreed to circulate the MDT Coordinator details to the group via Haresh Devalia. - It was confirmed there have not been any Network Wide Audits. - SH discussed there has been an In House Audit for Elderly Patients. SH to email the audit to DH. SG to present at next meeting regarding stratification. RJ to send out details to add to agenda DA to circulate to the group via HD SH to email audit to DH SG RJ DA / HD SH 5 of 6

- RB confirmed they are auditing Post-Neo Adjuvant Chemo-cycle 6 locally. Jenny Turner SHO at MTW is coordinating and will share with a view to a network wide audit. RJ to coordinate this with RB and circulate. - DVH explained to the group that they are recruiting for a Breast Care Nurse, a Business Case has been approved by Macmillan. This post is for 12 months. - Sarah Horn will circulate the template for her Blood Testing Protocols Audit to A.Kasem, Seema Seethatam and Delilah Hassanally comparing local Guidance with National Guidance. - The group discussed Mammograms in 35-40 year olds. R.Metha has been working on an audit for these patients to close the gap between 2010-15. RM to present data at the next meeting. to add to agenda. 9) General Updates: Research Update: - Barbara Mercier raised a query prior to the meeting regarding the OPTIMA trial. She has received responses from Medway and East Kent but pending responses from DVH and MTW. Both trust confirmed they are working on this. - Rema updated the group that Barbara had researched figures on the Clinical trials and the results were Kent, Surrey and Sussex were the lowest recruiters so funding is likely to be cut. It seems that not enough patients have been urged to go ahead with trials. All Trusts need to try a little harder to enter patients into trials. NOG Update: - RB discussed with the group about increasing awareness for Adjuvant Zoledronic Acid. It was confirmed that any post-menopausal lady who is receiving chemo needs 2 injections every 6 months. RJ to coordinate with RB and circulate RM to present to add to agenda. RJ / RB RM Update to be provided at the next meeting CNS Update: - There has not been a CNS meeting recently. They try to get as many as they can to attend but unfortunately nothing is working, Sue Green has even looked into different venues for these meetings. HD mentioned it may be a good idea to have a meeting before the TSSG, similar to the Follow Up Meetings. LB to email all CNS and try to arrange. 10) AOB: 10a) Peer Review: - RB discussed the changes in Peer Review. This is now going to be called Quality Surveillance, CQuins will be replaced. This will be led by specialist commissioners. The Quality Surveillance team portal will be available from 1 st July and uploads for each tumour sites need to be completed by 30 th August to say if you are compliant or not. confirmed she will circulate the Breast Indicators to the group. The reasons for the changes are that they are now under specialised commissioning and NHS England. 10b) Next Meeting: - It was agreed that at the next meeting CHW will be leading a presentation on Pregnancy and Breast Cancer. to confirm the date with CHW for October and KP to organise LB to email CNS to circulate to speak to CHW LB RB 6 of 6

11) Next Meeting Date: availability of the speakers. Tuesday 4 th October 2016 9am-12.30pm East Malling Conference Centre 7 of 6