Transcript Slide 1

Improving the Patients Experience:
Planning in the Context of Service Change
View National and Trust Reports at www.quality-health.co.uk
Plymouth Cancer Summit
February 2015
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
 CPES replicated in Wales, N Ireland,
IOM, Iceland, Australia, NZ, Taiwan.
International data generally supports
the England data
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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
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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: 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 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
 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
 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 7th 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
 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 – 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.)
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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
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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
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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