1. What matters to me Cancer survivorship: A consumer and carers lens on cancer survivorship and its impact on service delivery Toni Ashmore and Dr David Larkin On behalf of the research team including Megan Nutt, Dr Desmond Yip, Dr Angela Rezo, Dr Marion Currie

2. Background Division: Cancer, Ambulatory and Community Health Support Inpatient, outpatient, and community based services CRCC commenced operation in 2014 Primary adult tertiary referral hub Growing demand for services

3. Why Cancer Survivorship? Cancer: Curable disease or Chronic illness People with ‘terminal illness’ also survivors Needs beyond chemotherapy, radiation therapy and surgery Quality of life and wellbeing important

4. Ellen Stovell, National Coalition of Cancer Survivorship, 2013 We’ve been chasing the cure rather than the care. “ ”

5. Aims Define ‘Survivorship’ Enquire about physical, emotional and practical needs Examine coordination of resources and support from a clinical perspective

6. Method Survey for consumer, carers and health professionals – Issues in cancer survivorship research – Trialled with current consumers, key cancer consumer organisations – NSW and ACT ethics – Electronic and paper based – Distributed through hospital, community sources – Selection criteria – Limitations

7. Who were involved? 108 patients 31 carers 72 clinicians Majority of consumers over 55 years 44.5% male / 54% female

8. Consumer Treatment Status

9. Results

10. Definition of survivorship Living well with cancer beyond diagnosis and treatment

11. Psychosocial needs consumers and carers Ongoing psychosocial support and information from diagnosis, during and following treatment When, where and type of support and information desired

12. Staff talked to me about

13. Consumers: What I would like staff to talk about Overall… diagnosis and during treatment Room for improvement Genetic risk counselling at diagnosis and post treatment Change in appearance throughout treatment Timing of information/support Financial assistance at diagnosis ‘Living well with cancer’ during treatment More information/support post treatment in general

14. When would you prefer to talk about the psychological and emotional impact of cancer on you and your family

15. Staff talked with me about: Carer

16. At Diagnosis – Changes in appearance – Peer support and support group for carers – Financial advice and assistance at diagnosis – Transport and accommodation – Domestic support During treatment – Less social work / counsellor referral Post treatment – Emotional & psychological impacts of cancer post treatment – Peer support group – Palliative care referral/information Carers

17. When would you as a carer prefer to talk about the psychological and emotional impact of cancer on you and your family

18. Coordination of resources Better collaboration with GP and other health professionals Treatment summary/ Care plan Available from diagnosis Treatment Recommendations Planned interventions Repeating story Knowing what is available Waiting time Appointments Results Treatments

19. Where to from here? Further development of Survivorship model of care to enhance wellbeing from diagnosis Consumer representation on Model of Care committee

20. Where to from here… Timing of information / support – Time of diagnosis – Post treatment Cancer treatment plan/ Care plan from diagnosis Support groups – Mindfulness for consumers and carers – Post treatment Group – Other support groups

21. Education on resource / information availability – Health literacy – Inclusion of other AH services Other – Regional access to other Cancer allied health services – Transport – Complimentary therapies Where to from here…

22. Watch this space!