Quality Health

National Cancer Patient Experience Survey National Cancer Patient Experience Survey 20142014

Dr Reg Race

Mid Essex Hospital Services NHS TrustView National and Trust Reports at www.quality-health.co.uk

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 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

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 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

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

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.

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

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

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.

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)

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

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

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

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:

+ Breast patients rate Trust as better than national figure for that tumour group on 13 of 63 scored questions; worse on 5 questions

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%?

+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:+ 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.)

+ 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

+ 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

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

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