The London Cancer Experience Using The National Cancer Patient Experience Survey to improve cancer services across London Dr Theresa Wiseman Lead for Health Service Research, The Royal M arsden NHSFoundation Trust
Background The National Cancer Patient experience Survey Programme questionnaire included three sections where patients could make comments about the cancer care they received. The comments were in response to the following questions: 1. Was there anything particularly good about your NHS cancer care? 2. Was there anything that could be improved? 3. Any other comments?
Analysis Framework Analysis used (Ritchie and Spencer 1994; 2004). Following independent preliminary analysis by 2 researchers (TW AR), TW developed the framework. Data were analysed by: Dr Theresa Wiseman M s Anuska Randolph Dr Shelley Dolan M s Sarah Stapleton Dr Natalie Pattison M rs Grace Lucas M s Kate Harris M s Amrit Sangha M rs Geraldine O’Gara Findings presented by Trust and tumour group in terms of negative and positive comments
2012/ 13 report • Following the 2011/ 12 Free text analysis, data has been analysed for 2012/ 13 • This time with a more detailed content analysis • Analysis done by Trust, tumour group and theme
M ore comments and positive shift from 2011/ 12 to 2012/ 13 Numbers of comments were 75% up from last year: • 2011/ 12: 8862 (5067 LCA; 3795 LC) 2012/ 13: 15603 (10035 LCA; 5568 LC) Shift of 5.5% in positive direction for London total: • 2011/ 12: 60.2% total positive comments (5332) 39.8% for improvement (3530) 2012/ 13: 65.9% total positive comments (10262) 34.1% for improvement (3419)
Change in ranking for positive comments from 2011/ 12 to 2012/ 13 1. Was there anything particularly good about your NHS cancer care? 2011/ 12 2012/ 13 • Quality of care • Quality of care • Quality of professionals • Quality of particular teams • Speed and efficiency • Quality of professionals • Quality of Particular teams • Speed and efficiency Three additional themes: 5. Support and attention 6. Being part of clinical trials 7. Food
Top 5 Themes Was there anything particularly good about your NHS cancer care? All trusts without exception had comments concerning how excellent the quality of care was. This was the largest category. 1. Quality of care (3343 comments) “Can’t praise enough – incredibly professional and excellent standards” “Always felt listened to and valued” “Treated with dignity and respect” “We have always received first class treatment”
Top 5 Themes Was there anything particularly good about your NHS cancer care? 2. Quality of particular services/ teams (2765 comments) “I have nothing but praise for the breast care nurses. They were sensitive, articulate and emotionally supportive.” “The aftercare service, lymphoedema, acupuncture and psychology services are important to name. I attended Living after cancer workshop which was a great day; informative and therapeutic” 3. Quality of professionals (knowledge, skills, manner) (2700 comments) “He had a lovely manner and made me feel part of the decision making” “They were so thorough. Everyone treated me like a person and not a number”
Top 5 Themes Was there anything particularly good about your NHS cancer care? 4. Speed and efficiency in getting treatment (688 comments) “Everyone acted so quickly, appointment, scans, operation” “Diagnosis treatment planned and started, very swift” 5. Support and attention (627 comments) “Good support for my whole family” “I had excellent care and attention at all times, outstanding!”
Change in ranking for improvements from 2011/ 12 to 2012/ 13 2. Was there anything that could be improved? 2011/ 2012 2012/ 2013 • Waiting times • Poor care • Poor care • Poor communication • Understaffing • Waiting times • • Poor communication Information • Environment/ Hospital • Understaffing site
2. Was there anything that could be improved? Although overall most of the comments were positive, when it came to areas for improvement a greater number of themes were identified. • Environment/ hospital site • Delays in treatment • Access to resources/ • GP and community clinicians • Support • Liaison between depts • Food • Parking
Top 5 Themes Was there anything that could be improved? 1. Poor Care (866 comments) This theme has moved to top place in ranking. Poor care included: lack of dignity, lack of attention with regards to knowing the case, being made to wait for essential needs, and depersonalisation. “Care was very poor, nurses were indifferent, I didn’t feel safe” “I felt degraded and humiliated; chewed up and spat out! Emotionally insecure and I’m still suffering the consequences.” “ Some doctors treat you as if you are just there as a research specimen or something to experiment on. Nothing more.”
Top 5 Themes Was there anything that could be improved? 2 . Poor communication (518 comments) Despite Advanced Communication Skills training being a requirement for Peer Review, there were many comments and examples of poor communication. In addition, there were many comments about health care professionals not being able to speak English. “I was told I had cancer by the chemotherapy nurse who didn’t realise I hadn’t been told.” “The doctor should look at the patient first and not the scan” “M embers of staff speaking in languages other than English. For many, their level of English was poor and they were difficult to understand”
Top 5 Themes Was there anything that could be improved? 3. Waiting Waiting was prevalent throughout the services. This has not improved since last year; in fact people are reporting waiting longer. For some having treatment, the wait was anything from 4 to 6 hours. • In Outpatient Departments (OPD, 512 comments) • In Chemotherapy Day Units (CDU, 214 comments) • For pharmacy (112 comments) • For discharge (51 comments) “Waiting times are exhausting when you are already at a low ebb” “Waiting 4-6 hours to receive chemo which can be 10 minutes”
Top 5 Themes Was there anything that could be improved? 4. Information (423 comments) About diagnosis, operations, treatment options, side effects, managing symptoms, emotional support and financial information. “ I made 46 phone calls over 3 days often being put through too casually before anyone could tell me where to go- what time etc” 5. Understaffing (398 comments) Relating to staff shortage, lack of permanent staff and the quality of agency staff. “Staff levels were poor especially on the weekends. The nurses are not always caring. But I think they are overworked.”
Ambiguity of Questionnaire Increased number of comments related to ambiguity of questionnaire 577 patients raised concerns about the questionnaire: • Didn’t reflect their experience Attended number of trusts- questionnaire only for one trust when they had attended several Questions were unclear Relevant answer not available “ M y association with Trust 6 was short. I was diagnosed there and spent a week having test then transferred to Trust 11. 90% of these answers are about Trust 11 not Trust 6 which is the only hospital in the letter”
Feedback/ Dissemination • Findings fed back to LC and LCA • One page report for each Trust • Re-informed tumour working group action plans for next year • Pan London Patient Experience Working group
Thank you Please contact Theresa.Wiseman@rmh.nhs.uk
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