1. NBT NEURO-ONCOLOGY PATIENT EXPERIENCE QUESTIONNAIRE 2015 RESULTS SWAG Network Brain and CNS SSG 17 th November 2015 Kings Weston House, Bristol Lois Baldry & Bea Coghlan Neuro-Oncology CNS’s NBT

2. Response Rate 28 survey’s were sent in July 2015 46% Response rate This has substantially improved on 2014 NBT response rate of 25%, assuring us of qualitative information to improve and develop our service. The National Cancer Patient Experience Survey, is being sent out imminently therefore we do not have a benchmark.

3. 2013-2014 : Patient questionnaire results Trust / network level priorities identified for pathway improvements Out of hours contact details needing clarification : NBT 75% This has been addressed by providing an information sheet with these details Re-evaluate at next survey Information about recurrence : NBT 62% This has improved from previous survey (41%). We are continuing to incorporate information provision. The majority of Consultants work in the same way however we have one Consultant who doesn’t. This is being managed locally. Provision of privacy and Dignity NBT 64% below National % New Hospital provides majority of single side rooms which provide ease of visiting and privacy and dignity Lead cancer nurse has raise this with ward sisters and managers 100% of patients knew who to contact relating to health concerns 2014-2015: Comparison Data Q25 : 100% knew who to contact during office hours Q 26: 77% knew who to contact outside of office hours Q28: 77% were satisfied with information they received about tumour recurrence. Q 42: Enough Privacy? 100% Q44: Respect and Dignity? Always 92% Some of the time 8%

4. Overall Patient Experience 2015 Q62: 54% of patients felt that all teams linked up and worked well together (i.e. between primary and secondary care), Q63: 50% of patients felt they had received the right amount of information about their condition and treatment.

5. Overall Patient Experience 2015 Q65: The impression of the quality of care and services offered to patients since their initial treatment: Overall 92% of patients felt they were receiving a good or above this level of service.

6. Areas for further development (1) Q3: After your first meeting with the neurosurgeon did you understand what was happening and did you feel supported? 62% felt completely supported, 38% felt they required more support from their neurosurgeon. Neurosurgeons to consider action Q9: what was your experience of the way you were told you had a tumour? 61% was done sensitively 39% should have been done a lot more sensitively. Consider whether this question needs re-wording to clarify whether this relates to histological diagnosis or results from a scan. Q6: Who first told you that you had a tumour and where were you? 69% told by a hospital doctor. 8% Hospital Nurse, 15% Southmead Hospital Consider whether Doctors within DGH need to provide more written information regarding investigations.

7. Areas for further development (2) Q30: Beforehand, were you given written information about the operation. 54% were; 31% were not provided with information by their neurosurgeon. It is very difficult to capture all pre-operative patients as many come into the hospital as emergencies or are seen by other neurosurgeons. Information provision has improved since CNS’ nurses have started meeting patients pre-operatively with 2 core Neuro-oncology Neurosurgeons. We are in the process of organising a central drive where –by the neuro-surgeon can access pre-operative information to provide to patients in our absence. Q36: When you had important questions to ask a ward nurse, how often did you get answers you could understand? ACTIONED:- We have already approached the ward Managers to instigate ward based training/teaching as well as neuro-oncology ‘Champions’ role to aide expertise at ward level.

8. Areas to be commended on: Patients understood the reasons for their tests. Before starting treatment: 100% were given information 54% of patients felt involved in the decision making process regarding their treatment (23% - to some extent). (NB, patients are often admitted with confusion and neurological deficits) 100% of patients knew their nurse specialist’ name. 70% of patients felt it was very easy to contact their CNS 100% of patients felt the specialist nurse listened carefully to them 92% felt they understood the answers to their questions. 100% of patients knew who to contact relating to health concerns 77% felt they were given privacy discussing their condition 77% knew who to contact outside of office hours 85% of patients were given information and advice about their condition by the CNS 84% Hospital staff gave them information about self help groups 92% of patients were given clear information on discharge & who to contact by ward staff. 69% of patients felt their neurosurgeon explained the procedure well & their questions answered. 92% had confidence in their neuro-surgeon. 92% of patients felt that a family member had an opportunity to speak to a doctor

9. Future Developments  It is essential to redesign the survey to reflect the patient pathway & incorporate the vital services that OT, Physio & SALT provide.