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Breast Pathway Board Date: Monday 22 nd May 2017, 15.00-17.00 Venue: 6 th Floor East Meeting Room, 250 Euston Road. Chair: Rebecca Roylance ( RR ), Pathway Director 1. Welcome and apologies RR welcomed members of the board in particular returning member Deborah Glover (patient representative) and new member Mark Nathan (Registrar at Barts Health). 2. Minutes of the last meeting and matters arising The minutes of the last meeting were accepted as an accurate record of proceedings. Actions from the previous meeting were discussed and the relevant actions closed. Updates on actions were as follows: Action Dec-03: MA-D to send feedback about the chest wall service feedback sent but needs further discussion and clarification. JF to speak to MA-D. Action Feb-06: Systemic guidelines to be circulated to medical oncologists for approval. There has been no feedback from RFH yet. The board agreed a two week deadline for further comments. RC to liaise with relevant colleagues at RFH. Action Feb-07: RC to update radiology guidelines within surgical guidance autumn 2017 agreed as a timeline with a draft for the next meeting (September) 3. Audit Risk Reducing Mastectomy Audit Following comments the template has been updated. Albena Naydenova will be pre filling the first section of the form and sending it to the relevant MDT representatives via the pathway board representatives ACTION 1: Pathway board reps to ensure audit completed by the RR MDM representative Lymphoedema audit SC presented this item which had been discussed in September 2016. SC to circulate summary of lymphoedema commissioning guidance. Comments from the board included: Private healthcare figures were not captured but it is likely that a significant number of patients are funding their own lymphoedema care Improvement in late detection should be linked to treatment summaries and Health and Wellbeing events DG suggested that breast edema may be less well recognised Training for CNSs has been provided which received good feedback. The board suggested that this should be an annual programme.

DG suggested that the LIMPRINT study of lymphoedema would be useful to look at and offered to send SC a contact. Action 2 DG to send SC LIMPRINT contact Action 3 - SC to circulate summary of lymphoedema commissioning guidance. Oral chemotherapy audit MN presented the audit template for the use of oral vinorelbine before and after the availability of eribulin. Royal Marsden Partners also plan to carry out this audit. This could inform a service improvement project for the use of oral chemotherapy in the community but the use needs to be understood first. The audit covers five years before and after the introduction of eribulin. It was agreed that there would be a two week window for comments back on this audit. Action 4: Board members to send MN comments on the oral chemotherapy audit proforma: Mark.nathan@bartshealth.nhs.uk 4. Stratified follow up update SC gave an update. The guidelines were published in December 2014. There is a need to update these once the new systemic therapy guidelines have been agreed. Barriers to implementation include: o IT o Decision making between diagnostic and treatment centres o Finance PAH have just started to implement this and 8 people have gone onto a self management pathway. The main challenge is to complete treatment summaries. SC explained that stratified follow up for prostate patients is being implemented in June 2017 and after that the sector focus will be on breast There is a dedicated post at Barts Health NMUH have been up and running for two months. They are recruiting a data manager This is an area of interest for Macmillan which may be helpful for those trusts struggling to implement 5. Two week wait referrals and patient choice HS highlighted 2ww patient choice data There is evidence to suggest that many patients are unaware that they are on an urgent pathway. HS asked for feedback from group on this issue. DG stated that it depends how much time the patient has with their GP and that the terminology used in patient information needs to be clear. DG felt that it also depends on the patient and patient has to take a certain amount of responsibility. The group had experience of the GP not saying it is a possibility of cancer and felt that it s a difficult conversation for GPs. JF highlighted that it can be difficult to meet 2ww as services often have to work around patients availability.

Next steps are to work with GPs to further understand the barriers and develop suitable to tools to address them. HS to feed back on progress at future meeting. Action 5: HS to feed back on patient choice work at a future meeting. 6. Nursing update Prosthetics audit A full set of results have not been received with submissions outstanding from UCLH and Barts Health. Full results will be presented at the next meeting but currently patient experience survey feedback is positive with some room for improvement regarding choice of suppliers. ACTION 6: Relevant board reps to liaise with their CNS team to submit the data Stratified follow up Barts are taking the lead. A review of their practice showed there have been 8 recurrences picked up so far, 4 through annual mammography, 2 through clinical examinations, 2 from the GP. Workforce There have been new appointments for nurses to cover the metastatic pathway: BHRUT secondary disease CNS, UCLH 2 nd CNS for oncology, RFH 2 nd metastatic CNS for Hampstead site. Training and education Kay Eaton ran a lymphoedema training day which received good feedback. There were 12 attendees. There is appetite for an annual / refresher day. Screening update The centralised administration hub is going well. The outcome of CELBSS procurement is not yet public. 7. Updating guidance event and education event The board suggested that guidance could be updated as part of the education event. A good date was felt to be February 2018 to avoid Royal Marsden (October) and Royal Free (September) events and to align with international conference(s). The following agreed to lead on breakout sessions: JG surgery ESp oncology EH/MB psychology CM/CG nursing MN trainees HS to lead on administration. The board supported a session run by a patient representative, and there was some discussion about a session for GPs. Action 7: Breakout session leads to design session for education event

8. Gap analysis update RR and HS gave an update on the picture in NCL. Commissioners are supportive of the proposal to form a system wide Clinical Leadership Working Group to review the updated gap analyses against the pathway specification and consider solutions that would be transformational from our current baseline. The recommendation that Trust CEOs need to be supportive of this has led to a formal letter to NCL CEOs requesting support for clinicians from their Trusts to be involved. This is currently being considered by NCL CEOs as part of wider service sustainability review although UCLH CEO has expressed support and the UCLH/Whittington collaboration is in progress. Data Two week wait performance o Highlights fragility of service but UCLH now compliant Length of stay o RFH have implemented a change since the timeframe the data relates to (6 months ago) o At some Trusts patients are still coded as inpatients when they are under hospital at home HNA o o o Whittington perform very well, they have ipads to record data RFH have not returned data which may be due to the wrong contact being used as the breast service sits under surgery. The Hampstead site capture this data at MDT There are recovery package project managers at all Trusts except NMUH, RFH and the Whittington which may affect data capture Treatment summaries o Royal Marsden Partners perform much better than the sector which may be due to differences in data capture. The definitions are currently being standardised o Barriers include there being no defined trigger point for treatment summaries being completed and difficulty getting the form onto clinical systems. Health and wellbeing events o There are some very good examples of HWB events in the sector. There will be a change in the definition to allow a one on one appointment to count as some patients do not want to receive this information in a group setting. 9. AOB A Haven outreach service is due to be launched at the Whittington on the 2 nd June. This needs to be used or the funding will be lost. There is also a metastatic support group at UCLH and Wellington service at Golders Green. 10. Next Meeting Wednesday 20 th September 3-5pm. 6th Floor East Meeting Room, 250 Euston Road. NW1 2PG

ACTION LOG Shaded actions have been completed since the last meeting. Action Action Owner Date Due Status reference Sept-03 Sept-10 Sept-11 Dec-02 Feb-01 RR and SC to update stratified FU guidance regarding endocrine therapy Update March 2017: Delayed as dependent on systemic guidance update Mastectomy audit results to be presented at the next Network Education Day Trust representatives to discuss the consent audit with their teams and ask a named oncologist to carry out the audit to feed back names at the next meeting Update Dec: Deferred as Trusts at various stages of implementing new national consent process Implementation of prosthetics recommendations to be reviewed at the May 2017 pathway board TD and ES to work to resolve family history referrals issue in BHRUT area Feb-02 RR to liaise with MA-D re chest wall service Update May 17: JF to liaise directly with MA-D Feb-06 Systemic guidelines to be circulated to medical oncologists for approval Update May 17: Comments from RFH not yet received. Feb-07 May-01 RC to update radiology guidelines within surgical guidance Pathway board reps to ensure audit completed by the RR MDM representative RR/SC 06-Dec 2016 MA Feb 2018 Trust reps RR TD/ESt JF 06-Dec 2016 22-May- 17 22-May- 17 22-May- 17 Deferred ESp 22-Mar-17 New deadline June 17 RC Trust reps Update May-02 DG to send SC LIMPRINT contact DG May-03 May-04 May-05 May-06 May-07 SC to circulate summary of lymphoedema commissioning guidance Board members to send MN comments on the oral chemotherapy audit proforma: Mark.nathan@bartshealth.nhs.uk HS to feed back on 2ww patient choice work at a future meeting. Relevant board reps to liaise with their CNS team to submit the prosthetics audit data Breakout session leads to design session for education event JG surgery, ESp oncology, EH/MB psychology, CM/CG nursing, MN trainees SC All June 17 Complete HS Dec 17 JF Complete Session leads Dec 17 Attendees Name Trust/Organisation

Rebecca Roylance Claire Mabena Faye Gishen Sharon Cavanagh Ros Crooks Claire Grainger Patricia Dean Lesley Cousins-Forrester Esther Hansen Deborah Glover Fiona Bremmer Emma Spurrell Ash Mosahebi Rob Stein Ashraf Patel Joanna Franks Alex Clayton-Jolly Zereen Rahman-Jennings Mark Nathan Jasdeep Gahir Helen Saunders University College London Hospitals Royal Free London - Barnet and Chase Farm Royal Free London Hampstead Royal Free London Princess Alexandra Hospital Trust Patient Representative Patient Representative Royal Free London - Hampstead Patient representative Whittington Hospital Royal Free London Royal Free London PAH UCLH Barking, Havering and Redbridge University Hospitals Barts Health North Middlesex University Hospital Apologies Name Muhamed Al-Dubaisi Antony Pittathankal Premila Natarajan Mary Burgess Lucy Side Emma Staples Virginia Wolstenholme Tina Dah Trust/Organisation Royal Free London - Barnet and Chase Farm Barking, Havering and Redbridge University Hospitals Homerton University College London Hospitals Great Ormond Street Hospital Barking, Havering and Redbridge University Hospitals Barts Health GP