1. Macmillan Living With & Beyond Cancer Programme (2 year project commenced August 2015)

2.  Debbie Ashforth - Macmillan Transformation Programme Lead  Zoe Nichol - Macmillan Quality Improvement Facilitator  Trudy Taylor - Macmillan User Involvement Coordinator  Anne Ogden / Charlotte Brosnan - Macmillan Admin Support The Project Team

3.  Project Background, Aims & Objectives  Cancer Recovery Package  Risk Stratified Follow-up Pathways Today’s Discussion

4.  2007 – 2012 National Cancer Survivorship Initiative identified four priorities for transforming cancer care: 1.Cancer Recovery Package 2.Redesigning follow-up 3.Physical activity 4.Consequences of treatment 2013 - produced “Living With and Beyond Cancer: Taking Action to Improve Outcomes” - providing evidence, as a basis for action, for commissioners and providers. Background

5. “Many cancer survivors have unmet needs, particularly at the end of treatment, whilst others are struggling with consequences of treatment that could be either avoided or managed. Therefore it is imperative that the way in which we support cancer survivors is reviewed and amended to ensure improved cancer survivorship outcomes and to effectively address cancer survivors unmet needs.” What Do We Mean by “Living With & Beyond Cancer”?

6. The Cancer Story is Changing Improvements in early detection and diagnosis; More advanced treatments; Move from acute to long term condition; Increasing numbers of people living with and beyond cancer; Current model unsustainable and not meeting patients needs.

7. Follow-up care is stretched – let’s avoid the iceberg! Demand is increasing by 3% per year due to increased incidence and improved survival rates; Additional resources are not available to meet this increasing demand.

8. Number of people in each CCG living with and beyond cancer up to 20 years after diagnosis as at the end of 2010. Local Prevalence

9. Number of people in each CCG estimated to be living with and beyond cancer up to 20 years after diagnosis by 2030. Local Prevalence

10. To deliver the Macmillan Living With and Beyond Cancer Agenda: Support cancer teams to implement the Cancer Recovery Package in a phased approach across all tumour sites within a 2 year period; Redesign new methods of follow-up and support implementation of risk stratification; Co-design and subsequently co-own the project with patients, their families, clinicians and commissioners; All underpinned by Macmillan's 'Nine Outcomes‘ – “What matters most to people with cancer.” Aims & Objectives

11. Macmillan’s 9 Outcomes

12.  Macmillan Co-production Model / menu of opportunities established;  First user involvement group October 2015 – named Pennine Acute Macmillan Patient Engagement Representatives “PAMPER;”  Patient experience survey undertaken to identify the main issues for patients; Macmillan User Involvement

13. Menu of Opportunities Board Member North East Sector Living With & Beyond Cancer Board (NES LWABC) Attending Member PAHT Macmillan LWABC Steering Group Process Mapping events Cancer Strategy Other Short Projects Focus groups Questionnaires Review Health & Wellbeing Events Remote Member Feedback Case Studies Reference Group Co-production PAMPER

14. ActivityTimescale Scoping PhaseAugust-November 2015 Pennine Acute/Macmillan User Involvement first meeting October 2015 Phase 1 Head & Neck & Urology pre-meetingNovember 2015 Phase 1 Head & Neck & Urology (kidney & bladder) pathway process mapping events January 2016 Phase 2 Colorectal & Haematology pathway process mapping events April/May 2016 Phase 3 Upper GI & Gynae pathway process mapping events June/July 2016 Phase 4 2 nd Urology Event (prostate, penile, testicular) & Cancer of Unknown Primary - TBC September 2016 Phase 5 TBC

15. Macmillan Cancer Recovery Package

16. Electronic Holistic Needs Assessment/Care Plans Needs assessment and care plans should be offered at key points in the pathway.

17. Cancer Treatment Summary The cancer treatment summary is a document produced by the specialist team at the end of treatment for cancer and at other subsequent trigger points.

18.  In addition to being a useful communication tool between hospital teams, GPs and patients, there are potential clinical benefits:  Improved clinical outcomes for patients - potentially earlier diagnosis and treatment of recurrent disease through awareness of symptoms by patients and GPs;  Improved quality of life and patient experience of treatment - the TS can enable patients with recurrence or morbidity of treatment to be signposted in a timely way back to the correct clinical team by clear information on access to services. Potential Benefits

19.  GPs will flag up cancer patients in their practice and address needs of the patient via the “Cancer Care Review”;  The TS enables the GP to potentially put relevant patients on the “end of life pathway” or be involved with on-going symptom management, e.g., pain;  Some practices will use the summary as a reference letter and this might be flagged up on GP IT systems. The Impact of The TS on General Practice

20. Health & Wellbeing Events Every individual with cancer should be offered the opportunity to attend a health and wellbeing event at the end of treatment: it is an integral part of the cancer pathway.

21.  Based on the cancer treatment received and personal circumstances of the individual, allowing clinicians to identify which patients are suitable for: Supported self-management Shared care or Complex case management  Corresponding to low, medium and high levels of specialist support;  Therefore prioritising acute service resources towards patients with greatest need. Risk Stratified Pathways

22.  Many outpatient follow up appointments offer little value to the patient;  Large proportions are scheduled simply to convey a test result;  Demand is increasing by three per cent per year due to increased incidence and improved survival rates - additional resources are not available to meet this increasing demand;  Needs change as patients move along the pathway demanding a more tailored approach to care in place of the current ‘one size fits all’ approach; Why Risk Stratify?

23.  Released capacity enables resources to be redistributed to diagnosing more new patients and supporting those with metastatic and complex disease;  The personal cost of follow-up can be significant for patients particularly those with other conditions and illnesses who need to attend other departments. Where the patient cost of care can be reduced it should be;  Technology is offering many new alternatives to face-to-face follow up;  Existing clinics are often overbooked and ensuring access times for new patients and urgent follow ups can be challenging. Why Risk Stratify?

24. Three Forms of Aftercare

25.  Patients are provided information about self- management support programmes or other available support  Signs and symptoms to look out for and who to contact if they notice any  What scheduled tests they may need and how they can get in touch with the right professionals if they have any concerns. Self-Care With Support & Open Access

26.  Follow up care is shared between Acute and Community and / or Primary Care providers;  Rapid access back to acute sector if required. Shared Care

27.  Most follow-up care delivered in the Acute sector – where patients are given intensive support to manage their cancer and / or other conditions. Complex Case Management Through MDT

28.  People living with and beyond cancer: Have improved quality of life and improved health and wellbeing; Are more confident in their ability to self manage their health and make appropriate use of health care resources; Live longer due to healthier lifestyles and better management of consequences of treatment; Key Benefits

29.  Implementing the Cancer Recovery Package supports wider implementation of stratified pathways of care, leading to fewer face to face follow up, allowing reallocation of resources to focus on patients with complex needs. Key Benefits

30.  An exciting partnership between Macmillan Cancer Support and Pennine Acute Hospitals NHS Trust;  Radical and innovative transformation of cancer services to ensure needs of patients and carers are addressed;  All of which is informed by the views of people affected by cancer;  But without the support and generosity of Macmillan, none of this would be possible; Summary

31.  Will support achievement of: World Class Cancer Outcomes – A Strategy for England 2015-2020; Priorities within NHS Five Year Forward View; Pennine Acute Cancer Strategy; Pennine Acute “Raising The Bar on Quality.” Summary

32. Questions? Thank you for listening