NBT NEURO-ONCOLOGY PATIENT EXPERIENCE QUESTIONNAIRE 2016 RESULTS SWAG Network Brain and CNS SSG 16 November 2016 Lois Baldry , Bea Coghlan & Sheryll Bautista-Pike Neuro-Oncology CNS’s NBT

Response Rate 51 surveys were sent and 22 responded (43% Response rate) This has substantially improved on 2014 NBT response rate of 25%, assuring us of qualitative information to improve and develop our service. We are still looking for ways to improve our response rates by regularly reviewing our patient questionnaire and ways to conduct this. The 2015 National Cancer Patient Experience Survey programme included three sections where patients could make comments ( in their own words) about the cancer care they have received.

These are : Was there anything particularly good about your NHS cancer care? Was there anything that could have been improved? Any other comments?

National Cancer Patient Experience survey NBT Survey Was there anything particularly good about your NHS cancer care? Great Nurses. ~Over worked. The Macmillan nurses that have supported me through my treatment have been excellent in “translating” the sometimes complex descriptions of my cancer and the intended treatment and in offering wonderful support generally. Of Note, I would recommend Bea to anyone as she has been wonderfully supportive. Home care from Physiotherapist was brilliant. I have found the treatments and care provided to me to be of the highest quality. My ongoing treatment (palliative care) is top quality with a great team of carer supporting me. My sincere thanks to all of the health professionals who cared for me. I attended two hospitals both excellent treatment. My surgeon Neil Barua was excellent and saved my life. A lovely man that always came to visit me. I cant thank him enough. All staff on level 2 are brilliant and nothing too much of trouble even reception clerk who always greeted everyone with a smile. Overall the care I got before and after surgery was amazing. I can thank everyone who helped me enough. Macmillan nurses have been very supportive and helped paper over the communication gaps.

National Cancer Patient Experience survey NBT Survey Was there anything that could have been improved? Surgeon gave me a long term prognosis which I didn’t ask for, in fact I’d say I didn’t want to know. Parking and travelling arrangements. Follow up from leaving hospital after an operation took 4 months. Better liaison between A&E and the wards A better understanding of my treatment plan post surgery. Better accessibility to consultants.

National Cancer Patient Experience survey NBT Survey Any Other comments ? Lack of communication between departments and hospitals. My sincere thanks to all of those health professionals who have cared for me. I’m always taking part in a survey from previous cancer (2007) BRI. For both nights after the operation, I had trouble sleeping. The staff were excellent but there were continued disturbances in the night. I had to find bench in a day room away from the ward to get to sleep on the second night. Informed registrars – some of whom could have more tact and empathy with patients. Found nurses on high dependency ward very noisy at night; laughing and talking, very annoying. After the initial shock of the diagnosis a follow up call to re iterate information given would be helpful to discuss.

Overall Patient Experience 2016 Q7: 86% of patients felt supported by their neurosurgeon post operatively. Q34: 95% of patients felt they had received the right amount of information about their condition and treatment.

Overall Patient Experience 2015 Q36: The impression of the quality of care and services offered to patients since their initial diagnosis: Overall 95% of patients felt they were receiving a good or above this level of service.

Areas for further development (1) Q5 : Were you given pre operative information about your operation on your appointment? 68% Yes, it was easy to understand 5% yes, it was difficult to understand 14% no, I was not given written information 9% Don’t know / can’t remember 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 4 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. Q10 : Did hospital staff do everything they could do to help control your pain and symptoms? 68% All of the time 23% some of the time 0% not at all 9% I did not have any pain Feedback given to the ward managers to help improve pain control for patients.

Areas for further development (2) Q11: while in hospital, if you were seen by either a physiotherapist, occupational therapist or speech therapist, were you given contact telephone numbers of the teams that you have been referred to on discharge? 50% Yes 23% No 5% don’t know/cant remember 18% did not need help from health or social services 5% no response Patient’s comments : Some physiotherapy for walking and speech would have been helpful. Physiotherapy would have been good and I could have done them at home. Would have liked more information about wound care on discharge. No referral made. An in patient list has now been started as well as a neuro oncology team ward rounds . The ward rounds happens after the MDT meeting . This allows for patients issues , concerns and discharge planning to be raised. We will discuss with the therapy teams if community contact number are provided to patients to allow patients to contact community teams. Q15: Were you given written information about the type of tumour you had at your clinic appointment? 64% Yes, it was easy to understand 9% Yes, it was difficult to understand 14% No, I was not given written information 5% I did not need written information 0% Don’t know/cant remember 9% No response. We provide information from the Macmillan charity as well as the brain tumour charity. These information leaflets are written in a way that patients can easily understand them. However, some patients do have cognitive deficits and this may impact how they are able to understand the information leaflets given to them.

Areas for further development (3) Q19: when you have an important question to ask your nurse specialist, how often do you get answers you understand? 64% All or most of the time 14% Some of the time 0% rarely or never 9% I did not ask questions 14% no response CNS to explore ways on how to simplify complex information to patients. Potentially, patients do have cognitive problems and this impact how they understand / comprehend the topics discussed. Q22 : Did your nurse specialist give you information about : Support or self help groups for people with brain tumours - 64% Yes 32% No 4 % No response Financial help or benefits - 64% Yes 27% No 9 % No response Free prescriptions - 45 % Yes 41% No 14 % No response Work / educational matters - 45% Yes 32% No 23% No response CNS to ensure that patients are aware that they are entitled to self help groups, financial help, free prescriptions and work/education matters. It is sometimes difficult to discuss this at the time of histology meeting as patients are very distressed from the discussion of the diagnosis. Patients also tend to forget that this has been discussed. Therefore it may be useful to conduct a follow up telephone call so that information discussed could be clarified with the patient and their family.

Areas for further development (4) Q30 : Before you started your treatment , were you told about long term side effects of the treatment? 45% Yes , definitely 36% Yes, to some extent 5% No, future side effects were not explained 0% did not need any explanation 5% don’t know / can’t remember 9 % No response Long term side effects are always discussed by the oncologist. However, some patients may not retain all the information discussed due to cognitive difficulties and memory problems. Q31 : While you were being treated, were you given enough emotional support from hospital staff? 68% yes definitely 23% Yes, to some extent 0% No, I would have liked more support 0% I did not need emotional support from 9% no response Whilst there is an psychology team at BHOC, they have a long waiting list. Patients are also not so engaging on emotional support services despite referral. CNS continually assess and refer to appropriate services as appropriate. We could also refer to Brain tumour support charity and Brain tumour charity .

Areas for further development (4) Q32 : Since your diagnosis, has anyone discussed whether you would like to take part in a research trial ? (This is not discussed if there isn’t an appropriate research trial at the time) 64% Yes 14% No 14% don’t know / can’t remember 0% Not applicable 9% no response Clinical trials are always considered for our patients, however, not all meet the criteria of the trial . The clinical trials available also has limited number of patients that they can recruit. Cloincial trials are always considered when appropriate.

Areas to be commended on: 82% of the patients confirmed that they were told they had tumour sensitively. 95% of the patients were given the right amount of information regarding their condition and treatment. 81% Of patients felt that neurosurgeons had informed them what would happen during surgery. 86% of patients confirmed that information regarding the side effects of the treatment was easy to understand. 86% of patients felt their neurosurgeons had supported them well post surgery 86% of patients knew their nurse specialist’ name. 82% were treated with respect and dignity by the doctors, nurses, etc. 100% of patients felt the specialist nurse listened carefully to them 82% knew who to contact outside of office hours 85% of patients were given information and advice about their condition by the CNS 86% of patients were given clear information on discharge & who to contact by ward staff.

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

Any Questions