PEN Awards Webinar – 29 Sept 2015

#PENNA2015 #PatExp
What’s working well in
patient experience?
PEN Awards Webinar Series
29th September, 12 - 1pm
13th October, 12 - 1pm
3rd November, 12 - 1pm
#PENNA2015 #PatExp

patientexperiencenetwork.org
#PENNA2015 #PatExp
RUTH EVANS
Managing Director
Patient Experience Network
WELCOME
What’s working well in patient
experience?
PEN Awards Webinar Series

#PENNA2015 #PatExp
Webinar content – 29th September 2015
Welcome and introduction
• Ruth Evans - PEN: Launch of the Winning Principles and overarching
Framework
• Bridget Hopwood - Picker Institute
• Andrew Hasler - NHS Improving Quality
Questions
• Jimmy Endicott - Leicestershire Partnership NHS Trust: ChatHealth School
Nurse Messaging Service
• Allan Anderson - Positively UK: HIV Peer support Improving well-being
Questions

#PENNA2015 #PatExp
Welcome to the UK’s leading awards event that recognises
Patient Experience excellence
Wednesday 11 March 2015
PEN National Awards 2014
Re:thinking the experience
LET’S CELEBRATE A YEAR OF SUCCESS

#PENNA2015 #PatExp
Intention and Outlook
• Passion and determination
• The most successful initiatives are driven by an individual or team with a
firm belief in what they are doing, and the need to invest time and
money to make it happen and bring about change.
• Broadening perspectives
• A key milestone for success is supporting and educating fellow
professionals to look beyond their own situations and embrace and
adapt work going on elsewhere.
• Keeping it simple
• Making initiatives easy for people to understand and adopt is crucial.
Clear communication, posting results and evidencing improvements
encourages engagement and continuation with projects.

#PENNA2015 #PatExp
Organisational Support
• Culture
• Creating a culture where everyone is engaged in patient experience and
understands the role they have to play in improving it is vital to success.
All successful initiatives are delivered by teams, not individuals.
• Management
• Senior level support is often key to the success of a project. The best
results are seen where improving patient experience is encouraged and
prioritised by management.
• Leadership
• Clinical and senior management leadership, particularly in the form of
empowering staff to identify, develop and implement changes is key to
sustainable improvement.

#PENNA2015 #PatExp
Evidence & Impact
• Financial impact
• It is clear that positive patient experience pays dividends, and our most
successful entries demonstrate how time and financial investment in
well thought out projects can yield an excellent return.
• Building professional relationships
• Working in partnership with teams within and outside your
organisation, as well as with volunteers and other groups is key to
ensuring ongoing success in spreading and embedding positive practice.
• Spread and sustainability
• Evidencing sustainability and transferability are key to success.
Demonstrating how initiatives have been or could be adapted provides
an opportunity to share and embed successful practices.

#PENNA2015 #PatExp
Bridget Hopwood
Director of Health Experiences
Picker Institute Europe
MEASURING AND IMPROVING PATIENT
EXPERIENCE FOR ALL

Measuring and improving
Patient Experience for all
Bridget Hopwood, Director of Health
Experiences
Picker Institute Europe
www.pickereurope.org

An international charity dedicated to ensuring the
highest quality health and social care for all
Our work is underpinned by a commitment to the Picker Institute principles
of person centred care and our core aims are to:
o Influence policy and practice so that
health and social care systems are always
centred around people’s needs and
preferences;
o Inspire the delivery of the highest quality
care, developing tools and services which
enable all experiences to be better
understood; and
o Empower those working in health and
social care to improve experiences by
effectively measuring and acting upon
people’s feedback.

Our partners and customers
Picker Institute Europe 12

Quality care is...
Quality
Clinical
Effectiveness
Safety
People’s Experience

“...what
actually
happens to
patients as
people in the
process of
receiving care
& treatment “
Achieving Patient-Centred Healthcare: Indicators of Progress and Success
Patient experience

Because “to measure is to know” and “if you
cannot measure it, you cannot improve it”
Core to an organisation’s reputation &
productivity
A risk management issue
A key indicator of quality and safety
An opportunity!
Achieving Patient-Centred Healthcare: Indicators of Progress and Success
Measuring patient experience – why?

Four Principles of PREM development
Patient involvement throughout
Patient centred care requires patient centred
questions
Experience based questions not satisfaction
Thoroughly test with the target group
Choose most appropriate method of data
collection
One size doesn’t fit all!

Survey design process
Qualitative
Scoping
• Focus groups
and/or depth
interviews to
scope main
issues/views
Questionnaire
Design
• Priority areas
identified in
qualitative
stage
• Format, length
and design
appropriate to
target
audience
Cognitive Testing
• F2F or
telephone
• Test for
interpretation,
recall,
responses
options,
format
• Amend and
retest
Data Collection
• Select
appropriate
methodology
for population
• Test approach
(pilot)
• Implement
surveys/ data
gather

Different experiences, different priorities
Type of patient
Old vs young
Male vs female
Ethnicity
Chronic vs Acute
conditions
Cognitive Ability
Type of Experience
Inpatient
Outpatient
Urgent Care
Community Care – eg GP
/ walk-in centre/ home
delivered care
Residential care/care
homes
Health Experiences Team - vulnerable and lesser-heard groups
e.g. children & young people; elderly; learning disabilities and condition
specific

Examples of our feedback tools -
children and young people
Children’s FFT Paediatric inpatient
and day case survey
Acute hospital care
Inpatient & day case
(now national CQC)
Outpatients (DH Innovation in
outcomes competition winner)
Emergency Department
Neonatal (parents’ experiences)
Transition
CYP Friends and Family Test
Children’s community – SaLT;
OT; physio
Chronic conditions
Allergies
Sickle cell disease

Learning disabilities Inpatient survey

Case Studies

Understanding the care experiences of people living with a
chronic health condition: a focus on Sickle Cell Disease
STAKEHOLDERS: collaboration between the National Institute for
Health Research (NIHR) Collaboration for Leadership in Applied Health
Research and Care (CLAHRC) for Northwest London (NWL), Picker
Institute Europe and the Sickle Cell Society
PATIENTS with Sickle Cell Disease (SCD) and their families:(i) adults;
(ii) children; (iii) parents
Focus groups revealed:
Access to good quality primary care and A&E services is variable
Psychology services are valued, but access to them is inconsistent
Transition from paediatric to adult services often induces anxiety
Age-appropriate information and social support needs improving
Greater understanding of the ‘hidden’ condition across society would
improve quality of life

Survey Development
Surveys developed and being implemented in England using an
online methodology. Three versions:
Adults 16 yrs + Children 8-15 yrs Parents 0-15 yrs
Surveys will help to:
Understand SCD care experiences on a national scale
Inform the delivery, design and commissioning of SCD
services

Influencing - success stories
o Meningitis Now: survey commissioned in 2012 highlighted
concerns around awareness of Viral Meningitis with 97% of its
victims left with sometimes debilitating after-effects.
o As a result, first ever Viral Meningitis Week, held in May 2013 -
to improve awareness of viral meningitis and its true impact.
• 2013 survey exploring support needs for 14-24yr olds affected by
meningitis – revealed information gaps.
• Led to expansion of Young Ambassadors group and introductions
of “Believe and Achieve” weekends
o End of Life Guide: created by the Motor Neurone Disorder
Association (MND Association), and formed around
evidence from a Picker Institute Europe research study,
has been awarded Patient Resource of the Year at this
year’s British Medical Association (BMA) Awards.
o Based on qualitative and quantitative data from key
stakeholders - including people living with MND, their
families and carers, MND staff and volunteers and covered
issues including end of life choices

Influencing - success stories (2)
o National CYP Inpatients Survey: developed by the
Picker Institute; incorporated into CQC national survey
programme from 2014
o CYP Outpatients survey: developed in conjunction with
Sheffield Children’s Hospital and winner of Department of
Health’s Innovation in Outcomes award in 2011
o Sheffield Children’s NHS Foundation Trust: building services
around people’s experiences, their capital building programme has
largely been informed by the survey findings. Concerns highlighted
in the survey, such as sign-posting, parking, disabled access,
privacy and dignity needs on wards have informed their design.
o Info gained about parent accommodation needs factored into ward
design, and resulted in the Sick Children's Trust charity providing
dedicated accommodation for critical care families

Always Events
An Always Event is a clear, action-oriented, and pervasive practice or set of
behaviours that provides:
A foundation for partnering with patients, service users and their carers;
Actions that will ensure optimal care experiences and improved
outcomes; and
A unifying force for all that demonstrates an ongoing commitment to
person and family centred care.
They are the aspects of care experience that are so important to patients,
service users and carers that providers must perform them for every patient,
every time.
They are co-produced and designed within each care setting dynamically,
ensuring the Always Events remain relevant and are true to their target
population
Currently in its second phase of piloting and evaluation
Further information and case studies on the programme can be found at

Perception Awareness Value Impact

#PENNA2015 #PatExp
Andrew Hasler
Senior Improvement Manager
NHS Improving Quality
LATEST NEWS ABOUT IMPROVING THE
PATIENT EXPERIENCE

Understanding what really matters

‘Personalised care will only happen when
statutory services recognise that patients’
own life goals are what really count’.
National Voices – 5YFV

Commissioned by NHS England, the person-centred outcomes
programme of work is about:
• achieving the best possible (optimum) quality of life
outcomes for individuals (patients, carers and citizens);
• understanding and modelling these at a population
level, and;
• leveraging influence within the overall system to enable
effective commissioning and best use of resources.
Mapping, Modelling, Measuring and Mainstreaming

Deliverables
1. Support to the pathfinder sites (x8)
2. Evidence scan
3. Definition
4. Summit / roundtable – experts in the room
5. Top tips publication on the relevance and application of
person-centred outcomes.
6. A model that brings together PROMs, PREMs and PCOMS
into a single framework that focuses on patients / people.
7. PCOMs case studies
8. International conference

What examples can be found to demonstrate where
person-centred information is used in a structured way to
influence population-level commissioning decisions with
the intention of improving population health and wellbeing
Evidence scan – key question
Examples and ideas to anthea.duquemin@nhsiq.nhs.uk

TweetChat
Wednesday 7th October
20:30 hrs

#PENNA2015 #PatExp
Questions?
#PENNA2015 #PatExp

OVERALL WINNER’S
PRESENTATION
ChatHealth School Nurse
Messaging Service
Celebrating Success
Jimmy Endicott - Leicestershire Partnership
NHS Trust
@LPTnhs @jimmyendicott

SCHOOL NURSE
MESSAGING SERVICE
@ChatHealthNHS
@jimmyendicott
Jimmy Endicott
Mobile Media Development Manager

AMBITION
To transform access to
healthcare for young people
@ChatHealthNHS
@jimmyendicott

• Imminent high risk
• 24/7
• Shared responsibility
• Availability changes
• Missed messages
• Excessive record keeping
• Identity verification
CLINICIAN’S THOUGHTS ON RISK IN MESSAGING …

• Imminent high risk
• 24/7
• Shared responsibility
• Availability changes
• Missed messages
• Excessive record keeping
• Identity verification
Since 1980 - young people with DEPRESSION has doubled
Since 2004 - hospital admissions with SELF HARM up 70%

• School Nurses
• Young People
• Police
• NSPCC
• Royal College of Nursing
• Safeguarding Leads
• Information Governance
Leads
• Teachers and Governors
• British Youth Council
• Sexual health text helplines
FOLLO
W US
SAFETY
WHO WE CONSULTED …

STAFF IMPACT
 Manageable
 Sustainable
 Improves safety
 Inter-agency
working
 Earlier intervention
 Released time
 1200 more contacts
ONE TRIAGE NURSE
SUPPORTS 65,000
YOUNG PEOPLE 11-19

East Riding of Yorkshire Council Hertfordshire Community NHS Trust North Bristol
NHS Trust Northamptonshire Healthcare Foundation Trust Northumbria
Healthcare NHS Foundation Trust South Tees NHS Trust North Lincolnshire
and Goole NHS Foundation Trust Suffolk County Council Bradford District
Community NHS Trust Staffordshire and Stoke on Trent Partnership NHS
Foundation Trust QNI Liverpool Community Health NHS Trust BBC
Radio Worcester Health and Care NHS Nottinghamshire Healthcare Foundation
Trust Journal of School Nursing Bedford Borough Council Norfolk Community
Health and Care NHS Trust Derbyshire Healthcare Foundation Trust SAPHNA
Journal of Nursing for Children and Young People East London NHS Foundation Trust
Journal of Primary Health Care Chesterfield Royal Hospital NHS Foundation Trust
Walsall Healthcare NHS Trust Pennine Care NHS Foundation Trust Central
Manchester University Hospitals NHS Trust Sheffield Children's NHS
Public Health England South Warwickshire NHS Foundation Trust
Rotherham Doncaster and South Humber NHS Foundation Trust Department
FOLLO
W US

MEASUREMENT
• Student survey (2,000 respondents)
• Patient and staff satisfaction video
interviews
• “Mystery shopper”
• Staff reference group
• Peer review (150 conversation transcripts)
@ChatHealthNHS
@jimmyendicott

IMPROVED PATIENT EXPERIENCE
• Improved access 1,200 more patients annually
• Less stigma – half contacts are anonymous
• Reaches underserved teens - 1/5 male users
• Improved safety, involving police/social-care
• Age appropriate
• More 1st time users
• Broader range of enquiries
• Engaging sooner
u can express yourself in ways you
wouldn’t to ur friends …
i feel less judged when i send a mssg
I’ve never told anyone this before, but …
*
*
*
@ChatHealthNHS
@jimmyendicott
thank you from the bottom of my heart
for helping people like me ;)*

WINNER’S PRESENTATION
HIV Peer support Improving
well-being
Celebrating Success
Allan Anderson - Positively UK
@ Positively_UK @allan_anders

Positively UK’s Peer Support
Service

Positively UK
Charity Aim: to improve the physical, emotional and social
well-being of people living with HIV
 Medium sized, 19 members of staff and more than 50
volunteers
 All front line staff and
volunteers trained and
accredited in delivering peer
mentoring and advocacy
 Based in London, support
1,000 people per annum

Peer Support
Aim: to help people feel more in control of their HIV
encompassing one-to-one assessment, information, guidance,
mentoring and advocacy. Aligned to
 Department of Health: NHS Outcomes Framework –
“Ensuring people are supported to manage their condition”
 Public Health Outcomes Framework – “People are helped to
live healthy lives and make healthy choices”
 NHS 5 Year Forward View – encouraging peer-to-peer
communities

Evaluation project
 What impact does peer support have on well-
being? Warwick-Edinburgh Mental Well-Being
Scale (WEMWBS)
 What is the perception of the service?
 How does it complement clinical care?
 How does it impact on other aspects of life?
This research project was supported by an
educational grant from MSD, and the secondment of
A K Gilbert, researcher, and employee of MSD

Demographics
109, 85.2%
11, 8.6%
2, 1.6% 6, 4.7%
0
20
40
60
80
100
120
Heterosexual
(straight)
Gay Lesbian Bisexual
Are you:
Survey Number
No of responses collected 154
Duplicates -9
No of responses analysed 145
Not accessing support from Positively UK -8
TOTAL 137

Peer support service - satisfaction scale
“..I feel that I am not alone”
“extremely satisfied with help and advice”
“..I have gained self esteem” “I have learnt to be positive
about life” “…professional, caring
and knowledgeable” “..they
help me cope with my new life
condition” “they are very dedicated
in supporting clients”
Why do you say this? (quotes)

Warwick-Edinburgh Mental Well-Being Scale
(WEMWBS)
14 statements relating to mental well-being
Lowest score = 14, Highest score = 70
Please tick the box that best describes your
experience of each over the last 2 weeks
Results - average score = 50.3 with a range 27 to 70
Please tick the box that best describes
your experience of each before you
accessed peer support?
Results - average score = 41.5 with a range 14 to 70

Positively UK’s peer support significantly
improves well-being
 12% improvement*
(an average of 9 points)
*statistically significant p≤0.01 (Mann-Whitney)

78 (66.1%)
53 (44.9%)
47 (39.8%)
92 (78%)
54 (45.8%)
33 (28%)
34 (28.8%)
29 (24.6%)
0 10 20 30 40 50 60 70 80 90 100
Face to face with one person
One to one on the telephone
One to one through email
Group support
Short modular courses/workshop
Web support
On-line support
Mobile app
In the future, how would you prefer
to access peer support?

To summarise….
 Peer support significantly improves well-being
 Complements clinical care
 Has a positive impact on other aspects of living with HIV
 Overall people are very satisfied with the service
This project has been supported by an educational
grant from MSD, and the secondment of A K
Gilbert, researcher, and employee of MSD

Peer Support – Relevance to other groups
 Peer support model can be used in any setting and in any
therapeutic area
 Started very small, growing to supporting 1000 people a
year
 Other organisations could
start with just a local peer-
led service
 Seek to influence the
commissioning of
effective services across
the UK

Peer Support – key elements
 Patient-led, services are
developed and delivered by
people living with HIV
 Highlights an undervalued and
underfunded service
 Robust evaluation proved the
value of peer support in long-term
condition management and
improving well-being
 Collaborative service drawing on strengths of the voluntary
sector to support clinical care

Peer Support – future success
 Working with local authorities who commission peer
support ready to re-tender in 2015/16
 Aim for peer support to be commissioned as key
component of HIV care
 Project 100 roll out our peer support model nationally over
4 years
 Working with patient groups, NGOs and HIV clinics
 Wide-scale evaluation and financial modelling

#PENNA2015 #PatExp
Thank you
#PENNA2015 #PatExp

PEN Awards Webinar – 29 Sept 2015

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PEN Awards Webinar – 29 Sept 2015