Regional Chemotherapy Service Review Chairman Welcome Purpose of our workshop is to review the achievements to date and agree the priorities for the Northern Ireland Cancer Network Development Plan. In light of experience in year 1, consideration will also be given to the arrangements required to support the implementation of the Network priorities. Attendance Dr Aine McNeill, GP is attending her first meeting of the NICaN Board Number of invited guests attending the workshop: Dr Karen Hamilton, Senor Research Fellow Dr Glenda Mock, ? Joining the meeting tomorrow to participate in the discussions Mr Peter Deazley, Secondary Care Directorate, DHSSPS Mr Noel McCann, Director of Performance Management, DHSSPS Apologies: Dr Paula Kilbane?? – Dr Anne Wilson ?? Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Context NICaN Regional Chemotherapy Workshop Policy Direction identified the need for a regional review of chemotherapy services Policy Direction DHSSPS Cancer Control Programme DHSSPS Cancer Service Framework Standards Current Service Capacity & Demand Single handed practice Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Regional review Endorsed by NICaN Board Chemotherapy Service Development Manager appointed Jan 09 Two Strands of work Baseline current chemotherapy services Service developments Baseline assessment Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Regional Chemotherapy Review To develop a safe, clinical and cost effective, patient centred, integrated chemotherapy service in line with regional policy, patient and carer expectations and best practice Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Key elements of review Identifying safety and quality issues Appropriateness of treatment location Current activity levels Workforce review Capacity planning tool Accrual to clinical trials New models of chemotherapy delivery Cost benefit analysis Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Baseline assessment process Stakeholder Engagement Methodology Consideration given to following Documents during the process (triggered questions) NCEPOD Self Assessment (complete) NCAG Commissioning Guidance for Cancer Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Process used What is positive about the chemotherapy service? What concerns do you have about the chemotherapy service? What are the issues to be addressed? Any suggestions for action? Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Positive Feedback Received No delay in accessing initial treatment Emerging evidence better patient outcomes Development of telephone helplines Increased access to Clinical Trials Development of Infusional Services at BCH Community PICC care and maintenance Electronic Diary for Scheduling Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Positive Feedback Received Excellent Competent Staff Staff try provide pt centred service and supportive care Innovative Posts with positive patient impact Excellent Clinical Pharmacy Service (Altnagelvin) Nurse Practitioner role in Enniskillen/Omagh Oncology / Community Liaison posts (Belfast Trust) Positive patient feedback received Cancer Units size enable patients to have a sense of belonging Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Positive Feedback Received Macmillan Information and Support Centre Starting to introduce new ways of delivering systemic therapy Lean Project in BCH – identifying potential for moving in patient to out patient chemotherapy Health Care at Home NICaN Improved multiprofessional team working Brings key stakeholders together Reduced working in isolation Standardised chemo practice + regimes Managed approach to introduction of new therapies (NICaN D&T) Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns expressed Capacity Excessive Demand with Centre / Units @ capacity Concerns how deliver expanding chemo service Inadequate rooms / seating Inappropriate referral patterns Unit chemo delivered @ centre No Capacity Planning tool Inappropriate use of beds – In pts not on tx/complications In Patient Chemo could move to OP but no capacity to do so Lack of available beds neutropenic sepsis Centre is location of last resort Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Waiting times in the centre / units Bloods / results Assessment - scheduling Treatment - 5am-9pm Oral Chemo – Haematology PICC insertion – delay in treatment Scan results Poorly defined acute oncology arrangements Strained relationships between A/E and oncology Timeliness and location of assessment Absence of joint protocols Lack of clarity of roles and responsibilities Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Weak system for managing chemotherapy complications Neutropenic sepsis – recognition / delays in AE Pathways poorly defined – variation in where pt admitted between centre and units during hours and out of hours Workforce Issues Limited oncology cover Cons workload too high Lack of succession planning to meet Cons retirement Shared care arrangements Unit with very limited medical cover Lack of knowledge, communication arrangements and feedback loops to oncology Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Lack of robust system/ shared care arrangement for pts with cancer and co morbidities Orphan patients Patient expectations Single Handed Practice Annual leave lack of cover New Patients – deferred Patients travelling long distances Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Telephone arrangements During hours and out of hours Variation in staff knowledge / competency Inappropriate advice / protocols COIS not up to date Inappropriate use 6 week cut off – nowhere for pts Unrealistic timeframe 20min callback – 45mins Staff stressed Communication delay to consultant / unaware Unfunded Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Information System inadequate - COIS Not fit for purpose Break down Delays Time consuming Errors – governance issue Manual entry blood results ‘Nightmare’ ‘IT support is a disgrace’ Lack of systematic information giving and sign posting to other services ’only told by fellow pts’ Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Treatment Intent not always explained/ understood Major issue Unclear / Documentation ‘Olive leaf of chemo’ Patient expectations – unrealistic / manage / relatives Poor palliative / supportive care arrangements Grey area - palliative/prognosis guarded How vigorously pursue potent comp of tx V comfortable Toxicities Explanation / long term effects Need better recording Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Fertility not discussed / given serious consideration Clinics Excessive nos attending Inappropriate appointment scheduling Bank holidays impact Variation in nurses being in attendance to enable communication / coordination Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Concerns Expressed Inequity End of txreatment Car Parking Access to services – MISC / Lymphoedema (extrav) Lack of choice of treatment day Nursing time given by nurses Access to Clinical Trials at Units End of txreatment Sense of Abandonment Ambiguity around shared care – Onc / Surg / GP Go into “Limbo land” Lack of Support Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Patient experience feedback Patient metaphors Its like being on a conveyor belt I’m just a number Its like a cattle market What’s your number again? If only they’d tell you what was going on At end of treatment it feels like the stabilisers are taken off your bike Going through A/E is a nightmare It’s the luck of the draw – find things out from other patients it would be great to have a chemo buddy like in breast cancer, no one seems to encourage it. It’s only when you go through it you know what it’s like Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Summary of emerging issues Capacity Workforce Organisation of Service Acute Oncology Arrangements Telephone Helpline Information System Wider team unclear re intent of treatment Survivorship issues Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Working Groups Capacity Planning Working Group (to identify a capacity planning tool and produce a business case in the first instance) Models of Chemotherapy Delivery Working Group (to explore and make recommendations for new and innovative approaches to chemotherapy services across NI) Workforce Development Working Group (to identify skill mix initiatives and training implications in support of a new model of chemotherapy delivery) Acute Oncology Arrangements Working Group (to develop pathways through A/E , integrated team working, and supportive organisational systems) Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival