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Transforming Cancer Follow Up Programme Mrs Mary Jo Thompson Nurse Consultant , Public Health Agency / NICaN Mrs Rosey Whittle Breast Care Nurse, South Eastern HSCT NIPEC Annual Conference Professional Standards Enhancing Person-Centred Care The cancer landscape is changing • 11,000+ patient diagnosed with cancer every year • 69,000+ people living with a diagnosis of cancer (diagnosed up to 18 years previously) • Issues with current system • Patient report unmet needs 40% Approach Macmillan offer of funding CMO involvement Professional Workshop 2010 Patient / Carer Workshop 2009 Ministerial approval CE Regional Board Director of Commissioning TCFU Programme Lead Programme aims to..... • Improve the patient experience and health & well being • Make best use of available resources • Enhance coordination and integration across boundaries National Cancer Survivorship Initiative Breast patient survey n=250 Prostate patient survey n=247 Evaluation pre-programme • Patients they received the medical support they needed 82.6% 82.3% • Patients felt less supported with – – – – Physical impact of cancer 59.2% 47.6% Emotional impact of cancer 44.3% 34.0% Practical impact of cancer 40.0% 29.9% Financial impact of cancer 29.5% 17.3% • Felt supported to make lifestyle changes to maximise health & well-being (31.3 % 32.6%) Breast - Self directed aftercare programme • Review mammography • Equipping the patient to self manage – Holistic needs assessment – Health & wellbeing events & – End of treatment summary record – Rapid access point – Survivorship services to support health & well being Prostate Follow-up programme • 6 regional nurse led follow-up pathways agreed • Varying degrees of implementation across Trusts • Implementation of recovery package – Health and wellbeing events – Holistic needs assessment • Survivorship services to support health & wellbeing Early wins • Survivorship website www.survviorship.cancerni.net • Health & wellbeing events www.survivorship.cancerni.net Calendar of events Challenging change process Change methodologies & tools SERVICE IMPROVEMENT Process Mapping, Analysis, Redesign, Measurement for improvement, PDSA, Sustainability & Spread, Involving patients PRACTICE DEVELOPMENT Shared Vision, Creativity, Values & Beliefs, Facilitation, Person Centredness, Culture & Context, Claims Concerns Issues, Clinical Leadership LEAN METHODOLOGY A3 Project Planning, Transformational Maps, Value Stream Mapping etc Reflecting on the human dimensions of change • IT processes (time factors), • Project plans (realistic deliverables ,timeframes), • Funding (longer term), • Admin support (crucial at Trust level), • Measurement (attention to detail, be sure what is to be monitored) • Energy (project team and health professionals), • Emotions (understanding the context and local relationships), • Commitment (driver for change – commissioner /clinical need, evidence repository) You can’t impose anything on anyone and expect them to be committed to it Edgar Schein Achievements Breast • Review mammography implemented for all patients on SDA pathway – Timely mammograms, results to patients in timely manner – Plan to rollout to all Trust • Rapid access – Confidence in re-entering system, appt within 2 weeks if required • Full implementation of the recovery package – Health and wellbeing events, holistic needs assessment, treatment summary records Achievements Breast • 41% on New SDA pathway (1,095 End Aug 2014 • 30% reduction (1023 dual specialty follow-up) • 25% reduction (2374) in waiting lists for breast surgical followup across region • 12% reduction (442) waiting lists for oncology clinics for breast follow-up Achievement Prostate • PSA IT Tracking system – through Regional Information System for Oncology and Haematology – Go live January 2015 • Pre PSA information leaflet – regionally agreed and available for GPs Achievement Prostate • Regional agreement for six nurse led prostate follow-up pathways • Implementation of several pathways across 4 Trusts • Implementation of recovery package – holistic needs assessment – Establishing and provision of health and wellbeing events Holistic Needs Assessments Rosey Whittle Macmillan Breast care Nurse South Eastern H&SC Trust NIPEC Annual Conference Professional Standards Enhancing Person-Centred Care 40% of cancer survivors in Northern Ireland have been found to have unmet needs following treatment (Santin 2012). There is a need to enable people living with and beyond cancer to have the best possible support and information to lead as active and normal lifestyles as possible. (NCSI 2010) Recovery Package ‘This provides a good summary of (alert symptoms & toxicities) in one letter.’ Breast HNAs - Numbers Completed Throughout NI utilising this new approach with concerns checklist • 800+ completed for new patients on SDA pathway • 500+ for patients on existing pathways and moved onto self directed aftercare pathway SET Audit Results (Breast, Colorectal, Haematology, Urology) Main Concerns Identified Fatigue 42% Worry, fear or anxiety Depression 24% 16% Hot flushes Insurance & travel 16% 12% Anger 10% Housework Diet & nutrition 8% 6% Advice & Signposting Education • Breast Awareness • ‘Caring for yourself after Breast Cancer treatment’ leaflet – Automated mammography – Signs & Symptoms – Rapid access back into system • Breast Cancer Care Moving Forward Pack • Copy of Care Plan Impact of HNA Help or adapt Fatigue Fear Increase Physical Activity Depression 100% 80% 75% 75% Confidence/Information Effects of Treatment 100% Signs & Symptoms to look out for 95% Manage your health 93.3% ‘The CNS and support worker are great listeners, very understanding and very helpful. I had lost faith in nursing staff but these two girls especially the CNS, has got me through some very rough times. They are what nursing and caring is all about. I wouldn’t be here if it wasn’t for her.’ Conclusion