Workforce Development Regional Chemotherapy Service Review 29th September 2009 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 ??

Background Increasing demand, scarce resource, service pressure Baseline Assessment April - Aug 2009 Stakeholder interviews n=430 Positive, concerns, issues 4 working groups established New Models of Chemo Delivery Workforce Development* Capacity Planning Acute Oncology Services Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Issues of relevance to this group Baseline Assessment Issues of relevance to this group 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 ??

Components of chemo service Service configuration Workforce configuration Leadership arrangement Governance arrangements Data and information technology Effective communication systems & processes Commissioning arrangement Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Current Organisational Model Hub and spoke model Centre based site specific oncologists visit units weekly Registrars travel out to units to support clinics Variation in staff grade support at units Resident hematologists at centre and units Common cancers treated at units Centre acts as unit for local catchment area plus regional service for complex cancers Appointments governed by cancer centre Notes leave CC and immediately returned Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

? 5 locations: Chemo assessment clinics Chemotherapy administration Review clinics Chemotherapy preparation and dispensing suite (pharmacy) Chemo Comp Nurses 5 locations: ? Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Workforce Medical Nursing Pharmacy Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Consultant Workforce Clinical Onc (wte) Medical Onc (wte) 17.5 5.9 Cons Workforce 17.5 5.9 Population per WTE Cons 100,000 305,000 Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Population per WTE Cons Consultant Workforce NI – 2009 Population per WTE Cons Scotland – 2008 Clinical Oncologist 100 78 Medical Oncologist 305 155 Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Single Handed Practice ‘Where one Consultant is timetabled to attend a particular clinic in the Cancer Unit or where one Consultant has sole expertise in the treatment of a particular tumour site in the Cancer Centre.’ Not sustainable for individuals Poor attendance at MDMs Delays in assessment and treatment Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

New Patient Attendances Northern Southern S. Eastern Western Belfast 05 / 06 549 578 438 502 1663 06 / 07 488 592 391 516 1929 07 / 08 543 676 435 545 1782 Growth in 12mths 11.3% 14.2% 5.6% -7.6% New patient attendances increasing across all 4 Units with largest increase in Southern Trust Decrease in new patient attendances in Cancer Centre consistent with no change in number of chemotherapy day case treatments Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Review Attendances Northern Southern S. Eastern Western Belfast 05 / 06 5443 4892 4095 4537 9789 06 / 07 5558 5017 4550 4787 11050 07 / 08 5825 5640 4711 5116 11726 Growth in 12mths 4.8% 12.4% 3.5% 6.9% 6.1% New : Rev Ratio 1:11 1:8 1:9 1:7 Review numbers increasing across all 4 Units with the largest increase again in the Southern Trust Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Chemotherapy Day Cases Northern Southern S. Eastern Western Belfast 05 / 06 1346 1918 2105 1674 6704 06 / 07 1484 2001 1940 1890 6972 07 / 08 1510 2089 2412 2123 7003 Growth in 12mths 1.7% 4.4% 24.3% 12.3% 0.4% Increases across all 4 Units with the largest increase in S EHST Minimal increase at the Cancer Centre In 2007/08 the Health Board of residence of patients attending the Cancer Centre were: EHSSB – 63%, NHSSB – 20%, SHSSB – 12% and WHSSB – 5% Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Oncology Unplanned Admissions Northern Southern S. Eastern Western Belfast 05 / 06 54 No data 166 06 / 07 36 No date 47 253 07 / 08 23 60 410 Growth in 12mths -36% 28% 62% Unit data re unplanned admissions is acknowledged to be incomplete Large increases with the exception of the Northern Trust Downturn in Northern Trust inconsistent with increases in new/review patient numbers. Is there any link with higher than expected % of unplanned admissions from NHSSB to the Cancer Centre? 2007/08 Health Board of residence of unplanned admissions to Belfast: EHSSB – 70%, NHSSB – 24%, SHSSB – 5.5% and WHSSB – 0.5% Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Onc Unplanned Admissions Activity Changes : 2006/07 – 2007/08 Northern Southern S. Eastern Western Belfast New Attendances +11.3% +14.2% +5.6% -7.6% Reviews +4.8% +12.4% +3.5% +6.9% +6.1% Chemo DC +1.7% +4.4% +24.3% +12.3% +0.4% Onc Unplanned Admissions -36.1% No Data +28% +62% Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan

Positive feedback Staff highly praised, committed, skilled, knowledgeable, professional, friendly No delay in starting chemotherapy Cancer Units size enables patients to have a sense of belonging Insertion of CVAD in centre and units and maintenance support in community Helplines are valued Clinical trials network developing NICaN has enabled MDT, standardisation etc Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Positive Feedback Where available Clinical Pharmacy at chemo unit Nurses providing support and continuity by being present with patients during clinics Healthcare at Home very highly praised Hospital community liaison posts Oncology nurse practitioner review Macmillan Support and Information Centre Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Assessment process inadequate (issues skimmed over eg fertility) Variation in assessment process (pre assessment bloods, some nurse led, some telephone assessment) Variation in assessing performance status Lack standardized toxicity grading tool Who can assess? How can the assessment be more holistic?

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Patients waiting around IV chemo to come out from pharmacy Patients waiting long times for oral chemotherapy and scripts What needs to happen to enable pharmacy to maintain their high quality service but be more responsive to the needs of patients? What roles could pharmacy staff potentially fulfil to meet service and patient need?

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Visiting Consultants, difficult to contact, no continuity, single handed practice, no cover for AL. Inability to see patients in wards – delayed discharges, reduces availability of clinical trials. Arriving late for clinics Overcrowded Clinics, inadequate medical cover, poor pre planning during some, Poor scheduling , peaks and troughs, not utilizing the week Inadequate capacity – patients see the pressure Medical cover: Lack of robust system during chemo administration Patient Experience: Excessive travel for patients, long delays awaiting treatment, Feel like a number, conveyor belt, dehumanising, gold fish bowl, Pre assessment bloods rarely done at cancer centre, poor continuity, repetitious for patients, difficult developing relationships Environment poor in some units – cold, limited chairs, uncomfortable seating, too many relatives, Lack rooms/space for assessing and treating, Limited facilities Privacy / finances / social workers / bad news/ Tea Continued……

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Inappropriate treatment location – historical referral patterns Knock on effect of lack of beds means day unit staff held back from chemo administration: Ill patients in inappropriate environments Inequities exist: HCAH and confusion re their role Inequitable issues re PICC service – different competence levels of nurse inserted (ie learners) Inadequate Hickman service both for insertion and removal What type of service model needs to be developed to make best use of the multiprofessional workforce and to improve the patient experience? How can we make more effective use of scarce resources?

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Information Not volunteered patient have to seek v overloaded with information, sometimes given with no explanation, no time to assimilate at 1st treatment No information re PICC being available Not kept informed re process / delays / able to leave unit Given information re treatment, but not re support available: finance, support groups, social worker etc Staff too busy, maybe 40 patients waiting, hinders asking questions Telephone helpline, variation in competence particularly out of hours, stressful, inappropriate advice use of SHO instead of reg, inappropriate use by patients, slow feedback process to consultant

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Relatives: Accompanying relative not invited into consultation; Limited inclusion of patients relatives to participate in supporting care at home Oral chemo: Older people living alone given tablets – no thought given to social conditions / suitability No appreciation of the need for a chemo buddy Limited ability to exercise choice – scalp cooling, where to get treatment Inequitable system re car parking exemption (free in units) Complicated system in BCH Inequitable access to complimentary therapy services – its reactive rather than proactive Limited accessibility to specialist palliative care services How can the workforce be configured and developed to best meet patient information need?

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Patients sent to AE, not right, but where to send them? Inappropriate environment, waiting hours beside drunks A/E staff not expert in oncology issues – inappropriately investigated or treated – no updates or information sharing Cancer centre only for treatment – where should others go – orphan patients - Nobody wants to “own” cancer patients who go through A/E (AE can’t close its doors) Admitted to wards with infections, junior staff with no oncology expertise Strained professional relationships, AE only get negative feedback and complaints. All patients through AE are priorities not just oncology, Poor communication – helpline raise expectations Lack of agreed coherent pathways, team work, systems NCAG Recommendation: Commissioners and providers should work together to develop acute oncology teams and services in all hospitals with A&E departments Acute Oncology Services Group

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan “Post treatment drop off”: Left on own, don’t hear about survivors, all these people then nobody The after is the hardest, didn’t realize the mental state I would be in Difficult to know who is in charge of long term – surgeon or oncologist? Post chemo conflicting information, who owns me. Feel in limbo – very scary time, No mention of support services, post chemo support mechanism is nil Oncologist gives you the impression they want you alive in 10 years but forget about the side effects in 15 End of treatment, I fell of the end of the conveyor belt – when do I go back to work etc Chemo review – why bother, “your bloods are ok – its not an assessment of me” Saw SHO he didn’t know me, prefer to see breast care nurse What needs to happen at the end of treatment and what models of review would best support patients?

Chemotherapy Care Pathway Access & referral Delivery & treatment environment Pt / carer information, education Assessment decision to treat, pt consent Prescribing, dispensing Urgent assessment, management of complications End of treatment record and care plan Infrastructure Workforce & training Leadership & teamwork Clinical Governance Data, IT, information flows Effective Commissioning

Workforce and Training Little interaction between onc / haem and GPs Lack of understanding round scope of roles Staff frustration as unable to utilise skills Staff feel under pressure and unable to deliver quality care Still need to implement guidelines re post treatment complications (GP) GPs don’t have enough knowledge /experience to help (Pt) Dr was young and experienced, told me different to consultant Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Workforce and Training Inadequate supervision while training Telephone helpline - triage nurse part of chemo team / OOHs telephone helpline competency Review patients - duplication of roles / ? most appropriate person assessing Gaps in specialist roles Need more PICC training Unpredictability of clinics No structured method of booking concurrent chemo/xrt Differences in Onc/Haem – adhoc practice creates difficulties for pharmacy in prioritising treatments Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Chemotherapy Care Pathway Assessment decision to treat consent Prescribing and dispensing Delivery and Treatment Environment Urgent assess Management complications End of Treatment record care plan Pt carer information What are the needs of patients across the pathway? What are the knowledge skills and competencies required across the chemotherapy pathway? What should the workforce profile be like in line with modernisation agenda? Medical Nursing Pharmacy Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival

Commissioners will want to be assured that: Patients who might benefit from chemo are able to access quality services Treatments which are delivered are appropriate to a patients condition Services are delivered safely Services are convenient for patients Patient experience is good Services represent good value for money Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival