2015/16 National Cancer Patient Experience Survey Ruth Hendy, UHBristol Lead Cancer Nurse

2015/16 NCPES Inpatient and day case adult cancer patients, discharged from hospital 01/04/15 – 30/06/16 Sent postal questionnaire Sept – Nov’16 Response rate 66% Results published July 2016 To be repeated 2016 (results 2017) 2015 revised methodology Reduced questionnaire length (50 Qs re patient experience) 14 unchanged Qs, 21 slightly amended, 15 new. Case mix adjusted results (according to Trust populations)

Upper GI results Upper GI Results only published for UHBristol (64), Taunton (28) and Glos (83) -175 responses combined > 20 + responses to a Q, to be published Patient comments available for each Trust acknowledge staff contribution highlight specific local issues re. car-parking, waiting, aspects of communication break-down

Upper GI Good practice 96 Question National average UHBristol Glos Taunton Patient given the name of the CNS who would support them 90 (87-93) 96 89 100 Patient found it easy to access the CNS 87 (82-91) 86 * Hospital staff gave information about support groups 83 (79-87) 92 88 All staff asked patient what they preferred to be called by 67 (58-75) 79 82 Doctor had the right notes and other documentation with them (94-97) 98 Overall, administration of the care was good / very good (86-92) 91 Length of time attending clinics and appointments was right 66 (58-73) 75 76

Upper GI areas for improvement Question National average UHBristol Glos Taunton Patient given easy to understand written information about their type of cancer 72 (68-75) 66 68 * Hospital staff gave information on getting financial help 55 (48-61) 59 60 Patient definitely told about side effects that could affect them in the future 54 (51-58) 57 52 Patient was able to discuss worries and fears with staff during visit (inpatient) (47-57) Patient given a care plan 33 (28-38) 28 Given clear written information about what they should/should not do post discharge 84 (81-88) 79 75 Hospital staff gave family all information needed to help with care at home 58 (53-62) Patient definitely given enough support from health and social services during treatment (46-62) 44 53 Patient definitely given enough support from health and social services after treatment 45 (38-52) 32

Headlines from additional 2015/16 patient experience activity in UHBristol + shared care patients ‘shared care’ provided genuine potential to negatively impact patient experience A negative experience at the start (eg. delayed diagnosis, cancelled operation), will in most cases negatively impact the whole pathway experience access to keyworker is paramount ‘enough’ care – do what you say and stop me getting anxious / worried

Next steps SSG / MDT to agree priority areas, discuss and plan local actions CNSs to continue to collaborate on shared-care across pathway Referrals/ handovers – continuity in care Consider shared information (eg. pathway leaflet) New patient information checklist – continuity (see next slide) Continued roll-out of ‘recovery package’ across SSG Holistic needs assessments Attendance at Health and Wellbeing events / clinics Treatment summaries for GPs

Patient Information checklists CONTENTS OF UPPER GI FOLDER - RUH Cancer Information & Support Centre Card and CNS card Macmillan ‘Cancer Guide’ Macmillan booklet (either stomach, pancreas or oesophagus) Help with the cost of cancer List of websites About Cancer Registration Hospital Travel Costs Scheme info sheet Parking discount info sheet/ Free prescriptions info sheet WHY counselling leaflet Patient guide with hospital map Service leaflet Bristol transport information Welcome/ intro pack for Upper GI patients - UHBristol Introduction letter Macmillan Understanding Cancer Booklet CNS leaflet/ contact details Cancer Information and Support Centre Depending on treatment – understanding chemo/RT booklet CAB Macmillan information with a note to state CNS will refer Body image information (for women Look Good, Feel Better leaflet) Penny Brohn Diet information Surgery information Free prescription information Childs small portion card   The packs can also be tailored to the individual with further info/ booklets