National Cancer Patient Experience Results 2018: Insights on Breast Cancer Care

National Cancer Patient Experience Results (NCPES) 2018 Breast Cancer Clinical Advisory Group Friday 20thSeptember 2019 Belinda Ockrim LCN and Helen Dunderdale Cancer Alliance Clinical Advisory Group Manager

2018 NCPES Any adult ( >16) with a cancer diagnosis and had an Inpatient or day case associated care episode during 01/04/18 30/06/18 National response rate was 64% (2017 - 63%) Results published September 2019 You can check any trust s quantitative results at www.ncpes.co.uk SWAG s breast responses : 2018 Breast responses UHBristol 138 North Bristol 117 Glos / Chelt 253 Taunton 92 Yeovil 75 Weston 46 Bath 108

Results and considerations 2018 results have just been published therefore decent analysis for this meeting not been performed.. UKCONS have just published their analysis of the national results and whilst there have been some serious improvements in overall care, access to CNS support and being involved in decision making there has been a deterioration in waiting times for first appointment , diagnostics and primary care support. Men rated their experience higher than women as did patients who recorded themselves as white Some of this broader thinking may not feel pertinent to us as you all see breast patients quickly and usually within the confines of rapid diagnostics and ethnicity data not shared with Trusts but worth considering when designing services, process and patient information. I have included in this presentation SWAG responses for 16/69 questions These were chosen as an indicator of services and perhaps the checks on the emergence of the LWBC ( personalised care ) effects.

National breast Ave Gloucest ershire North Bristol Question Bath Taunton UHBristol Weston Yeovil Pt definitely involved in decisions about care and treatment Enough privacy when discussing condition and treatment Possible side effects explained in an understandable way Pt told about side effects that could affect them in the future 79% 81 79 76 62 65 80 81 87% 83 94 91 93 81 97 92 75% 74 80 74 66 66 78 71 56% 56 69 53 43 58 62 56 There seems to be a trend: information long-term side effects given well whereas understanding potential side effects prior to treatment not understood so well and I wonder if this is to do with information overload at the beginning of treatment and whether we need to invest in this early information giving

National breast Ave Gloucest ershire North Bristol Question Bath Taunton UHBristol Weston Yeovil Given the name of a CNS Found it easy to contact CNS Given info about support groups Given info about impact on day to day activities Have you been given a care plan? 95% 89 100! 91 96 93 96 97 85% 85 85 83 88 79 98 96 89% 97 96 94 94 94 93 93 86% 90 93 85 83 90 88 96 39% 32 35 25 43 36 34 46 need to remember care can be split between different providers and named individuals as opposed to nursing or breast care teams may rate differently

National breast Ave Gloucest ershire North Bristol Question Bath Taunton UHBristol Weston Yeovil Understandable info about whether radiotherapy was working 61% 58 62 51 62 51 55 73 All info needed about chemo treatment 83% 81 * 79 80 76 90 86 Understandable info about whether chemo was working 64% 59 * 56 70 61 79 71 GP given enough info about pt s condition / treatment May need to consider radiotherapy information but good access to financial information and GP involvement shown with these results 96% 92 96 98 99 97 97 98 Hospital staff gave information on financial help Has anyone discussed asked if you would like to take part in research? Overall, how would you rate your care 0-10 65% 78% 64% 73% 72% 69% 82% 71% 31% 26 32 28 42 40 29 55 8.87 8.94 8.91 8.88 8.99 8.76 9.00 9.24

Thoughts Firstly remember whilst there is always room for improvement but these are a great set of results ! May need to review early information but don t rush off and overhaul it as this result also change with the development of early HNAs and WBEs such as first steps suggest we review in SWAG as the LWBC implementation progresses Remember to look at your comments and work through in your MDTs and where possible involve patient focus groups