1. Quality Health Improving the Patients Experience: Planning in the Context of Service Change Plymouth Cancer Summit February 2015 Dr Reg Race View National and Trust Reports at www.quality-health.co.uk

2.  153 Trusts surveyed – all those providing adult cancer care  Builds on the 2010, 2012,2013 national CPES: one of the largest cancer survey programmes in the world  109,760 patients surveyed: treated Sept- Nov 2013 in each Trust. Confidence interval +/- 0.3% at 95%  Patient definition: inpatient or day case; ICD10 code in primary diagnosis field; C00- 99 (excluding C44 and C84) and D05  Trust level and National deduplication to prevent multiple surveys to individuals  Questionnaire and cover letter asked patients to refer to treatment at the Trust named on cover letter  Patients allocated to 13 DH approved tumour groups  2010, 2012,2013 surveys all covered rarer cancers eg Sarcoma, BCNS, CUP, Other cancers  All 4 CPES used the word “cancer” explicitly  Response Rate 64% (70,141): Response Rate range 75% to 42%. CQC inpatient survey c. 53% nationally  Largest groups of respondents nationwide: Breast, Haematological, Colorectal/Lower GI, Urological, Prostate  CPES replicated in Wales, N Ireland, IOM, Iceland, Australia, NZ, Taiwan. International data generally supports the England data

3.  CPES shows very significant improvements over time. 46 scored questions improved 2010-14. Massive change.  Almost all Trusts have improved over time. Many have improved radically.  BUT: some scores declining nationally – e.g. transition point acute/primary care sectors  New analysis – based on multiple regression tree analysis – shows that the CNS is the single variable associated with high scores by patients in every tumour group. It is the most powerful factor by far.  Patients entering through ED much less likely to be positive than those entering through other pathways (matched data from 2010 CPES with NCIN RTD data)  Patients with recurrence of cancer or those who’ve had ineffective treatment give poorer scores than others  Year on year the same kinds of patients are less positive when you look at individual variables: the young; ethnic minorities; those with LTCs; patients attending London hospitals; non heterosexuals; patients with rarer cancers  Some questions in the survey get low scores each year: e.g. number of patients being given written care plans

5.  At corporate level, where some Trusts want to improve for reputational reasons  At MDT level, because they have their own MDT data and comparable national figures for that tumour group  By individual national charities to illuminate their policy formation and improve awareness amongst their specific clinical communities - Macmillan, CRUK, Prostate Cancer UK, Breakthrough, Blood Cancer Charities, Sarcoma UK, IBTA, Jo’s Cervical Cancer, NET Foundation, Bowel Cancer UK, and many more  QH is providing specific cuts of the data for them and doing follow on surveys e.g. for Pancreatic Cancer UK, Sarcoma UK, NET Foundation, Breakthrough, etc.  Follow on surveys for DH e.g. on early symptoms recognised by patients in 22 cancer types  SOLAR (Survey on line and reporting) tool available for all who want to use it in NHS England, charities, Trusts, allowing first cuts of data in real time at their discretion  By Strategic Clinical Networks, e.g. Merseyside and Cheshire, to understand the shape of cancer services locally and where they need to support  By CCGs and CSUs now the data is available by CCG patients place of residence  By researchers using the underlying data lodged at Essex University  BY QH and NCIN working together and separately to undertake analyses illuminating issues for the first time

6.  Important differences of perception between patients in different cancer groups: rarer cancer patients have less positive views  Patients overall responses positive – 80% or over on 31 of 63 scored questions  On 14 questions, cancer patients scored 70% or lower: e.g. on research and information, and on future side effects of treatment. Lowest scores in 2014 as in previous years on some information questions, cancer research, ward nurses, care plans, cross-boundary co- ordination (acute-primary care)  On comparable questions, cancer patients more positive than general hospital inpatients  Patients diagnosed more than 5 years ago were the least positive group on 23 items than patients diagnosed in the last year  Significant variations by Trust: e.g. Easy to contact their CNS - range is 92% to 58%  5 Trusts had no instances where patients rated them in bottom 20% of Trusts on individual questions: top Trust (South Tyneside) had 46 appearances in top 20% of Trusts  33 Trusts had 20 or more instances where they were rated in the bottom 20% by patients: 19 of these were in London  62 of 153 Trusts showed significant improvements since 2013, 41% of Trusts; 83% of Trusts improved 2010-12 and 49% between 2012-13  Many comparable questions between the 2013 and 2014 surveys + Significant improvements on 27 of them + Poorer scores on 6 160 Trusts

7.  Big improvements in services 2010-2014 seen by patients in most Trusts – and continuing improvement in 41% of Trusts 2013-14, building on earlier improvements  Significant improvements on 46 questions, 2010-14  Major differences between Trusts – huge variations from top to bottom performing  Some kinds of patients less likely to be positive than others: + Patients in some tumour groups e.g. brain/cns, other cancers + Patients entering through the ED rather than a recognised cancer pathway + Those without a CNS, concentrated in specific tumour groups and age groups + Those in London + Those in the most deprived areas + Patients from ethnic minorities + Patients who are not heterosexual + Younger patients under 25 and in some cases the over 75s + Women (on most questions but not all) + Patients with a mental health or LT condition + Patients initially diagnosed more than 5 years ago + Patients with a recurrence of cancer or where it hasn’t responded to treatment  This pattern of response much the same in every CPES

18.  High quality information to patients is one of the key variables associated with higher outcomes scores given by patients after an elective operation (BMJ Feb 7 th 2014, based on work by Quality Health)  Key Issues for Specialist Cancer Nurses:  CNS is the variable most strongly associated with high scores given by patients: true in England, Wales, Qatar, Australia  Variability by tumour group on information availability and giving  Progress can be made, as demonstrated by 4 year longitudinal data in England  Scores for ward nurses – on general wards where cancer patients happen to be accommodated – are far less good  Interface with primary and community care increasingly problematic

19.  Key Recommendations: + Ensure strong clinical leadership (many poorly scoring Trusts don’t have a Cancer Board or similar, or it is quiescent) + Improve communication skills of all clinical teams. + Consider using Macmillan values based approach to comms and practice + Ensure that your coverage of CNSs is complete in all tumour groups – Plymouth has gaps in Haematology and Urology. Read the tree analysis and digest the importance of the CNS as shown in every tumour group + Ensure that your CNSs can be easily contacted by patients– answerphones, bleeps etc. + Ensure that patients in rarer cancer groups (e.g. Sarcoma, BCNS, Urological, Other Cancers) get high quality information – use the packs produced by specific national charities (e.g. Sarcoma UK, BCRT etc.) + Use audit tools to ensure you are on top of CNS activity - Check if admin and clinical demands on CNSs reduce time supporting patients + Look at time CNSs spend on managing units / other staff, performing endoscopy etc. to look at patient support time actually available + Examine need for front line staff training on liaising with patients. Key problem in some Trusts. One Chief Executive said re his cancer results: “I know why our patients don’t like our services: we bring them in late, change their appointment times, and then we are rude to them” + Where there are complex pathways, be especially clear about a named CNS being there to join up the dots. Crucial where you are working peninsula wide + Ensure that patients presenting through ED get early diagnosis and fast treatment given their poorer experience and survival characteristics O

20. + Use the MDT characteristics document and DVD + Use peer review: Monitor performance of clinical teams against NCPR measures. Provides good forward indicator for future performance on next National Cancer Patient Survey. + Patient involvement in Internal Validation of clinical services for NCPR + Work with your GPs and primary care providers/community services to get real joined up working + Share your data with Primary Care e.g. the comments reports on cancer services – vivid examples in many Trust reports of problems in primary care + Construct joint care packages with GPs on how best to support cancer patients whilst they are in active treatment and in survivorship + Work with GPs in particular on how best to work the 2 week pathway, and on identifying potential rarer cancers

21.  Organisation of services affects patients: confusion, crowding, complexity creates poorer experience of care  Activity will rise as survivorship extends, so plan for that  Complex pathways need clarity on CNS control and navigation for patients  Patients presenting initially through ED are different in each tumour group: some of the rarest cancers have the highest proportions entering through ED  Evidence that non specialist cancer wards do not support the patient in the way you would want  Front end access and referral by primary care – and liaison with them after acute phase of treatment is crucial, from the patients point of view  CNS cover and access to them is critical  Information giving is key: strong evidence that good information improves outcomes in other areas  Patients with rarer cancers have a consistently poorer experience  Present services at Plymouth: comparative weakness in front end referral and access, some CNS scores, ward nursing care, conflicting information, transition point information to GPs post discharge, giving of assessment and care plans, personal treatment