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National Cancer Patient Experience Survey 2014. Mid Essex Hospital Services NHS Trust View National and Trust Reports at Dr Reg Race. Patients allocated to 13 DH approved tumour groups

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National Cancer Patient Experience Survey


Mid Essex Hospital Services NHS Trust

View National and Trust Reports at

Dr Reg Race

national survey methodology
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

National Survey Methodology
  • 153 Trusts surveyed – all those providing adult cancer care
  • Builds on the 2010, 2012,2013national 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
the big picture
The Big Picture
  • CPES shows very significant improvements over time. 46 scored questions improved 2010-14. Massive change. Look at your own progress.
  • Almost all Trusts have improved over time. Many have improved radically.
  • BUT: some scores declining nationally – eg 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: eg number of patients being given written care plans
how cpes data is being used
How CPES Data is Being Used
  • 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
key national findings
Key National Findings
  • 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 6160 Trusts
  • 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: eg 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
further analyses
Further Analyses
  • Age differences:
    • 41 questions on which stat significant differences across age bands
    • Youngest age group 16-34 usually the least positive (on 24 of the 41)
    • But: 76+ group least likely to be given name of CNS (four years running in the CPES)
  • Gender differences:
    • Smaller scale differences than other variables: 47 questions on which significant gender differences existed. Men more positive on 34 questions; women on 13
    • Men more positive about staff, privacy, respect and dignity, told enough, discharge, written information on type of cancer, free prescriptions
    • Women more likely to be given name of a CNS.
  • 2010-2014 comparison, examples of biggest improvements:
    • Hospital staff told patient they could get free scrips: up 10.1pts on 2010
    • Given written information on type of cancer they had: up 5.9 points on 2010
    • Given written information in advance about their operation: up 7.7 points on 2010
    • Staff explained completely how operation had gone: up 4.5 points on 2010
  • CPES is the patient survey showing broadest range of improvements and steepest improvements over time
further analyses1
Further Analyses
  • Sexual Orientation:
    • Non heterosexual group aggregated (because of low numbers)
    • On 24 questions non heterosexual group are less positive than heterosexual patients (out of 24 where there are differences between heterosexuals and non heterosexuals)
    • Many of the 24 questions relate to communication and information and respect with which patient treated
  • Long Term Conditions:
    • All LTCs aggregated
    • 50 questions on which stat sig differences between LTC and non LTC group; on 49 of these LTC patients are less positive
    • Those with MH or Learning Disabilities were the most critical groups
  • Ethnicity:
    • On 21 questions, statistically significant differences between views of patients in different ethnic groups
    • On 19 of these 21 questions, white patients more positive than some ethnic minority patients
    • Black patients least positive on 2 items; Asians least positive on 6 items; other ethnic groups least positive on 11 items
    • Examples of issues where EM patients more critical: information giving; confidence and trust in nurses; other issues on ward nurses; pain control; primary care support; and the overall rating of care
further analyses2
Further Analyses
  • Impact of the CNS:
    • One of the most striking finding of the 2010, 2012, 2013 and 2014 surveys. Analysed in two distinct ways
    • 2014- sig differences on every question bar one in the survey between those who have a CNS and those who don’t
    • Example: given easy to understand written information about operation: patients with a CNS 78%; without a CNS 55%
    • Poorer coverage of CNSs amongst over 75s. Overall coverage of CNSs lowest in Urological (79.0%) – compared to Breast (93.3%)
    • Patients starting treatment more than 5 years ago less likely to have a CNS (in each CPES since 2010)
  • Differences between tumour groups:
    • Patients in the “Big 4” cancer groups (breast, colorectal/lower GI, lung, prostate) have generally more positive views than patients in other cancer groups
    • Wide ranges of scores top/bottom eg “given easy to understand information about the type of cancer they had” – Sarcoma 58%; Skin 81%
    • Poorest scores by tumour group now Urological, Sarcoma, and BCNS
  • As in previous years, no consistent differences found between inpatients and day cases.
further analyses3
Further Analyses
  • Social Deprivation
    • Significant differences between quintile 1 (least deprived) to quintile 5 (most deprived) on Index of Multiple Deprivation (IMD), on 37 questions
    • Quintile 5 patients least positive on 24 questions; quintile 1 patients least positive on 12 questions
    • Many of the items where the most deprived decile patients are less positive relate to information giving and perceived feelings that patient being treated in offhand way (e.g. talking in front of the patient as if they were not there)
    • Some overlap between deprivation and ethnicity and age: quintile 5 has heavier concentrations of black/Asian and younger patients
  • Length of time since first treatment
    • On 23 questions, significant differences showing that patients who entered treatment 5+ years ago are less positive (replicating the finding in previous years)
  • “Old” SHA Analysis
    • 11 items on which sig differences between regions
    • On 8 out of the 11 items London is the worst performing old SHA geographical area
  • Recurrence of Cancer
    • Treated for the first time/cancer returned: patients being treated for the first time are more positive; patients who said their treatment had been effective more positive
  • 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
mid essex hospital services respondents
Mid Essex Hospital Services - Respondents
  • 889 patients in sample (Sept-Nov 2013, inpatients and day cases)
  • De-duplicated locally and nationally, to deal with multiple attendances through pathways
  • All with relevant ICD10 code C00-99 (excluding C44 and C84) and D05
  • 517 patients responded, of whom 136 Breast, 58 Haematological, 50 Colorectal / Lower Gastrointestinal, 48 Urological, 42 Prostate
  • Trust response rate 63% (national 64%)
mid essex hospital services overall view
Mid Essex Hospital Services– Overall View
  • Presence of a CNS is powerful positive influence: small gap in CNS cover on Skin cancers
  • Can accurately establish performance of MDTs in Breast, Colo, Lung, Prostate, Gynae, Haemo, Skin, Upper GI, Urological because of adequate numbers of respondents
  • Results show that, for example:
    • Breast patients rate Trust as better than national figure for that tumour group on 13 of 63 scored questions; worse on 5 questions
  • One of the middle ranking Trusts on the cancer survey
  • In bottom 20% of Trusts as rated by patients on 5 questions out of 63 scored questions in the survey
  • In the top 20% of Trusts on 5 items
  • Substantial improvement in 2014: up on 13 questions, down on 0 since 2013
  • Comparison with other local Trusts shows: Ipswich 1; Colchester 6; Cambridge 3; B&T 28; BHR 41; Southend 11; E&N Herts 12 (numbers of questions where patients rated them as being in the bottom 20% of Trusts)
longitudinal change 2010 14
Longitudinal Change 2010-14
  • Number of significant improvements, many on a large scale eg received written information on operation up 17 points since 2010
  • They include 22 questions where there is a significant improvement in 2014 over2010
  • One significant poorer score:
    • Fewer said that staff did everything they could to control side effects of chemotherapy
management recommendations
Management Recommendations
  • What are the issues? Where are you in the bottom 20%?
    • Patients views taken in to account by Drs and Nurses when discussing treatment
    • CNS listened carefully when last spoken to
    • Pain control in day case/outpatient environment
    • Dr had the right notes etc with them in OPD
    • GP given enough information on the patients condition and treatment
management recommendations1
Management Recommendations
  • Use audit tools to ensure you are on top of CNS activity - Check if admin 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
  • Ensure that patients presenting through ED get early diagnosis and fast treatment given their poorer experience and survival characteristics


  • 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. 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.)
management recommendations2
Management Recommendations
  • 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
  • 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
your trust management recommendations
Your Trust Management Recommendations
  • National findings show clearly that young, over 75s, ethnic minorities, non heterosexuals, patients with rarer cancers, those where treatment ineffective or where cancer has returned, those presenting through ED, are less likely to be positive
  • Calibration of communication with these groups of patients is crucial:
    • Role of CNS critical
    • Simplicity of comms to the 1 in 4 who don’t understand information about condition and treatment
    • Strategic Oversight – Cancer Board or similar
    • Early diagnosis: GP engagement and training with your cancer specialists
    • Clear information to patients
    • Training and support for your MDTs – on communication, MDT working
    • Analyse the gaps in CNS coverage if any
the next steps
The Next Steps
  • Build a performance management system which makes managers accountable. Exec Team needs to set targets, task individuals, and monitor progress regularly
  • Use training process effectively through MDTs
  • Recognise that there are wider corporate issues related to cancer services performance – e.g. staff numbers in key roles
  • Get the right number of CNSs, protect them, and get them joining the dots for patients
  • Lead the process within the Trust; keep the pressure up, don’t stop; repeat messages