National Cancer Patient Experience Survey
2014
Mid Essex Hospital Services NHS Trust
View National and Trust Reports at www.quality-health.co.uk
Dr Reg Race
Quality Health
 153 Trusts surveyed – all those providing
adult cancer care
 Patients allocated to 13 DH approved
tumour groups
 Builds on the 2010, 2012,2013 national
CPES: one of the largest cancer survey
programmes in the world
 2010, 2012,2013 surveys all covered
rarer cancers eg Sarcoma, BCNS, CUP,
Other cancers
 109,760 patients surveyed: treated SeptNov 2013 in each Trust. Confidence
interval +/- 0.3% at 95%
 All 4 CPES used the word “cancer”
explicitly
 Patient definition: inpatient or day case;
ICD10 code in primary diagnosis field; C0099 (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
 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
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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
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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
 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 coordination (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
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Significant improvements on 27 of
them
Poorer scores on 6 160 Trusts
 2010-2014 comparison, examples of
biggest improvements:
 Age differences:
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Hospital staff told patient they could get
free scrips: up 10.1pts on 2010
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Given written information on type of
cancer they had: up 5.9 points on 2010
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Given written information in advance
about their operation: up 7.7 points on
2010
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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
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:
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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.
 Ethnicity:
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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
 Sexual Orientation:
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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:
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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
 Differences between tumour groups:
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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.
 Impact of the CNS:
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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)
 Length of time since first treatment
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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
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11 items on which sig differences
between regions
On 8 out of the 11 items London is
the worst performing old SHA
geographical area
 Social Deprivation
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Significant differences between quintile
1 (least deprived) to quintile 5 (most
deprived) on Index of Multiple
Deprivation (IMD), on 37 questions
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Quintile 5 patients least positive on 24
questions; quintile 1 patients least
positive on 12 questions
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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)
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Some overlap between deprivation and
ethnicity and age: quintile 5 has heavier
concentrations of black/Asian and
younger patients
 Recurrence of Cancer
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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:
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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
 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%)
 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)
 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:
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Breast patients rate Trust as better
than national figure for that
tumour group on 13 of 63 scored
questions; worse on 5 questions
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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
 What are the issues? Where are you in the bottom 20%?
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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
 Key Recommendations:
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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.)
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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
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Use the MDT characteristics
document and DVD
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Use peer review: Monitor
performance of clinical teams
against NCPR measures. Provides
good forward indicator for future
performance on next National
Cancer Patient Survey.
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
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Patient involvement in Internal
Validation of clinical services for
NCPR
Construct joint care packages with
GPs on how best to support cancer
patients whilst they are in active
treatment and in survivorship
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Work with GPs in particular on how
best to work the 2 week pathway,
and on identifying potential rarer
cancers
Work with your GPs and primary
care providers/community services
to get real joined up working
 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:
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Role of CNS critical
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Strategic Oversight – Cancer Board or similar
Simplicity of comms to the 1 in 4 who don’t understand information about
condition and treatment
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
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Build a performance management system which makes
managers accountable. Exec Team needs to set targets, task
individuals, and monitor progress regularly
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Use training process effectively through MDTs
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Get the right number of CNSs, protect them, and get them
joining the dots for patients
Recognise that there are wider corporate issues related to
cancer services performance – e.g. staff numbers in key roles
 Lead the process within the Trust; keep the pressure up, don’t
stop; repeat messages