National Cancer Patient Experience (NCPES) Results 2017 Breast SSG, March 2019 Belinda Ockrim, LCN at YDH

2017 NCPES Any adult ( >16) with a cancer diagnosis and had an Inpatient or day case associated care episode during 01/04/17 – 30/06/17 Outsourced to Quality health pts sent postal questionnaires Oct’17 National response rate was 63% (2016 - 67%) Results published end of September,2018 (previously published in July) 2018 surveys have been sent out for same time frame and 2019 CPES will include outpatient work for the first time. Results have been published for all 7 trusts You can check any trust’s quantitative results at www.ncpes.co.uk 2017 Trust responses Breast responses UHBristol 755 116 North Bristol 591 137 Glos / Chelt 1182 207 Taunton 544 95 Yeovil 176 74 Weston 197 39 Bath 496 133

Any results less than the national average % are in red Dashboard Developed by PHE / NHS England Trusts’ overall generic score   % GLOS NBT RUH TST UH Bristol WHT YDH Nat 2017 2016 Patient definitely involved in decisions about care and treatment 79 77 76 83 78 81 82 85 72 Patient given the name of the CNS who would support them through their treatment 91 84 94 90 89 92 93 95 88 Patient found it easy to contact their CNS 86 87 Always treated with respect and dignity by staff Staff told patient who to contact if worried post discharge Practice staff definitely did everything they could to support patient 60 65 66 61 67 70 69 58 45 55 57 Patient’s average rating of care scored from very poor to very good (out of 10) 8.8 8.9 9 8.7 Any results less than the national average % are in red

Q1. Saw GP once/ twice before being told had to go to hospital

Q2. Thought they were seen as soon as necessary ? With GP

Q5. Beforehand, did you have all the information you needed about your test? Q5 and onwards hospital based

Q7. Were the results of the test explained in a way you could understand?

Q9. Patient felt they were told sensitively they had cancer

Q10. Did you understand the explanation of what was wrong with you?

Q11. When you were told you had cancer, were you given written information about the type of cancer you had?

Q12. Before your cancer treatment started, were your treatment options explained to you?

Q14. Were you offered practical advice and support in dealing with the side effects of your treatment(s)?

Q15. Before you started your treatment(s), were you also told about any side effects of the treatment that could affect you in the future rather than straight away? Excellent WBE are being held but do we need to revamp our information to have reminders from beginning through signing before treatment not effective LWBC link

Q17. Were you given the name of a Clinical Nurse Specialist who would support you through your treatment?

Q18. How easy or difficult has it been to contact your clinical nurse specialist? Reflect to previous slide where the patient were not given the name of someone opposing results of those who were and how easy it is to contact

Q19. When you have had important questions to ask your Clinical Nurse Specialist, how often have you got answers you could understand? Note national decrease

Q20. Did hospital staff give you information about support or self-help groups for people with cancer? Surprising result as support groups for this cancer speciality should be very high and re affirmed through CSWs and WBEs LWBC link

Q22. Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?

25. Beforehand, did you have all the information you needed about your operation?

26. After the operation, did a member of staff explain how it had gone in a way you could understand?

34. Were you given enough privacy when discussing your condition or treatment?

Q36. Do you think the hospital staff did everything they could to help control your pain?

Q38. Were you given clear written information about what you should or should not do after leaving hospital?

Q39. Did hospital staff tell you who to contact if you were worried about your condition or treatment after you left hospital? Dashboard gave us all poor ratings against national but mostly improving

Q41. While you were being treated as an outpatient or day case, did you find someone on the hospital staff to talk to about your worries and fears? This also maybe the start of the CSW impact

Q48. Once you started your treatment, were you given enough information about whether your chemotherapy was working in a way you could understand?

Q55. Have you been given a care plan? Need to change wording like keyworker versus CNS and clinical trial versus research changes going forward in next steps is moving towards wording of careplan National average breast pt. response to care plans is 38%

Q58. Since your diagnosis, has anyone discussed with you whether you would like to take part in cancer research? National average for breast pts is 31%

Why CPES results are important Since 2008 the National Cancer Survivorship Initiative (NSCI) in partnership with Macmillan and DoH have been looking at patient experience and how that should inform service provision and one of their five shifts in care recommendations is that Support people affected by cancer by greater focus on recovery, health and well-being after cancer treatment Shift towards assessment, information provision and personalised care planning ( from one size fits all Follow Up to Follow Up based on assessment of individual risks, needs and preferences ) Shift towards self management. From clinically led to supported self management i.e. with appropriate clinical assessment , support and treatment Shift from single model of clinical follow up to tailored support that enables early recognition and preparation of consequences of treatment as well as signs and symptoms of further disease Shift from emphasis on measuring clinical activity to emphasis on experience and outcomes ( PROMS) and furthermore these results are now used as part of The external Quality Surveillance for our provision of quality cancer services (national cancer peer review) and also felt to be a good indicator in the NHS E transformational Living With and Beyond Cancer (LWBC) project and funding and matrix compliance i.e. increase % of care plans