Porter, K., Jarrett, N., Davis, C., Addington-Hall, J., Corner, J., Duke, S., & Lathlean, J.

1. ‘Many hands make light work’ or ‘Too many cooks spoil the broth’ ? Achieving the tricky balance of appropriate involvement in palliative care for advanced cancer Porter, K., Jarrett, N., Davis, C., Addington-Hall, J., Corner, J., Duke, S., & Lathlean, J. Background: It is known that there can be a large numbers of different people and teams involved in the care of people with cancer (1-4), but research showing exactly who is involved in the care of people with advanced cancer has not been done before. Twenty-four case studies were collected to learn about who is involved in the care of people with advanced cancer, from the patient’s perspective. Social networking analysis was used to depict the patient’s perception of who has been involved in their care within the past six months. Patients identified an average of 26 people involved in the patient’s care (‘PIPC’s) (range: 9-45). Patient 23: living at home, waiting for primary surgery Two patients at <1 month since diagnosis Patient 10: receiving inpatient care, including monoclonal antibodies, at Acute Hospital PATIENT 1: ‘I haven’t seen [District Nurses]… Cause they used to come on a Thursday …And I said to her, ‘look, I wanna go to the daycare center’, and she said, ‘well, how do you feel?’, and I said, ‘I feel fine!’ She said, ‘well, you call me when you need me’, and that’s how we left it …They would come another day if I needed them, but I haven’t needed anyone.’ SPECIALIST PALLIATIVE CARE UNIT (SPCU) COMMUNITY PALLIATIVE CARE CLINICAL NURSE SPECIALIST 2: ‘I asked [SPCU Physician] to review him regarding the pain he was having … [I referred] the occupational therapy team …about organising a suitable chair for him to have… I contacted housing… because he was in… a private rented accommodation and wanted to be … under the medical council authority housing.’ Patient 12: receiving inpatient services from Acute Hospital; being treated for two concurrent primary cancers Patient 15: receiving inpatient services from Specialist Palliative Care Unit Two patients at <3 weeks prior to death Conclusion: The process of making these maps with and for patients can be useful in terms of providing an opportunity for patients to review who is involved in their care, who is a ‘key worker’, who may have been involved in the past, and who may be involved in the future. The end result is a visual tool which may be used by both patients and PIPCs to quickly identify who is involved and potential gaps or overlaps in service provision. The discussion involved in map-making revealed that some patients and PIPCs are actively involved in trying to achieve the ‘appropriate balance’ of involvement in palliative care for advanced cancer. References: 1. Dawson, S. (2007). Inter-professional working: communication, collaboration…perspiration! International Journal of Palliative Nursing, 13(26): 502-505. 2. Walshe, C., Chew-Graham, C., Todd, C., & Caress, A. (2008). What influences referrals within community palliative care services? A qualitative study. Social Science and Medicine, 67: 137-146. 3. Smith, S.D.M., Nicol, K.M., Devereux, J., & Cornbleet, M.A. (1999). Encounters with doctors: quantity and quality. Palliative Medicine, 13: 217-223. 4. Jarrett, N. Porter, K., Addington-Hall, J., Corner, J., Davis, C., Duke, S., & Lathlean, J. (2012). Communication pathways surrounding cancer: who is involved, how do they communicate, and how does the patient understand and contribute to this? Unpublished final report to Dimbleby Cancer Care, January 2012. REC: 10/H0505/51 UoS RGO: 7006 SUHT R&D: RHM CAN 0729 NHS Southampton City R&D: MWP/034/10 Southern Health NHS Foundation Trust R&D: SHT013 UKCRN: 8979