A narrative for person-centred
coordinated (‘integrated’) care
www.nationalvoices.org.uk
@NVTweeting
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Overarching
summary – service
user perspective
Summary
My
goals/outcomes
Communication
Person centred co-ordinated care
Emergencies
Transitions
“My care is planned with people who
work together to understand me and my
carer(s), put me in control, co-ordinate
and deliver services to achieve my best
outcomes.”
Care planning
Information
Decision making
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In this slide set
1. Why do the health and social care systems need
this Narrative?
2. How did we develop it?
3. The Narrative – for testing with system
stakeholders
4. What happens next?
5. Questions for feedback
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1. Why do we need a narrative for
“integrated care” ?
The King’s Fund/Nuffield Trust said, and NHS Future Forum
agreed, that

“The most fundamental prerequisite to the
development of integrated care at scale is the crafting of a
powerful narrative”. With 175 current definitions of ‘integration’,
the lack of a common understanding is a barrier to change;
and

the patient (and service user) perspective should be the
‘organising principle’ of integrated care, to ensure it results in
significantly improved outcomes and experience.
Here we illustrate what impact “coordinated care” from the
service user perspective could have on real people’s lives…
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2. How have we developed the
patient/service user Narrative?
The Statements
• This narrative is based on the statements that patients and service
users could make if the care they experienced was person centred
and coordinated.
• The statements were initially drawn from consultations with patient
organisations and patient experience indicators. They featured in a
National Voices paper for the Future Forum.
• Those statements were tested and revised in a workshop on
September 24th 2012 that brought system leaders together with
patients, service users and patient organisations.
• The full version you now see built in their feedback. It also
incorporates similar statements, developed with service users, from
the ‘Making it Real’ initiative.
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3. The Narrative
There are five key elements to the overall Narrative…
Service user perspective
A. overall subject
what is it we are talking about?
B. headline definition
what the service user would say this means
C. generic ‘I’ statements the elements of good co-ordinated care from the
user’s perspective
Service organisation response
D. headline purpose
what we all need to do to achieve the headline
definition -- from commissioners’ and providers’
perspective
E. ‘we’ statements
what ‘we’ as commissioners and providers will do to
achieve the headline definition [to be developed] 6
A. Subject
‘Integrated care’ means:
person-centred
coordinated care*
* This is the overarching subject. Patients want coordination.
Whether services are formally integrated is secondary
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B. Definition -service
user perspective
My care is planned with people who work
together to understand me and my carer(s),
put me in control, co-ordinate and deliver
services to achieve my best outcomes*
*This is the headline definition of what co-ordinated care is. It was
derived from consultations with patient organisations and discussed
and amended at the workshop on 24th September 2012.
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C. Generic ‘I’
statements
My goals/outcomes
All my needs as a person were assessed and taken into account.
My carer/family had their needs looked at and were given support to care
for me.
I was supported to set and achieve my own goals.
Taken together, my care and support helped me live the life I want to the
best of my ability.
I was in control of planning my care and support.
I could decide the kind of support I needed and how to receive it.
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C. Generic ‘I’
statements
Communication
I was always kept informed about what the next steps would be.
The professionals involved with me talked to each other. I could see that
they worked as a team.
I always knew who was the main person in charge of my care.
I had one first point of contact. They understood both me and my
condition(s). I could go to them with questions at any time.
That person helped me to get other services and help, and to put
everything together.
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C. Generic ‘I’
statements
Information
I had the information and support I needed in order to remain as
independent as possible.
I could see my health and care records at any time to check what was
going on. I could decide who to share them with. I could correct any
mistakes in the information.
Information was given to me at the right times. The information was
appropriate to my condition and circumstances. It was easy to
understand and up to date.
I was told about the other services that were available to someone in my
circumstances, including local and national support organisations.
I was not left alone to make sense of information. I could meet (or
phone/email) a professional when I needed to ask more questions or
discuss the options.
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C. Generic ‘I’
statements
Decision making
I was as involved in discussions and decisions about my care and
treatment as I wanted to be.
My family or carer was also involved in these decisions as much as I
wanted them to be.
I had help to make informed choices if I needed and wanted it.
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C. Generic ‘I’
statements
Care planning
I worked with my main professionals to agree a care plan.
I know what is in my care plan. I know what to do if things change or go
wrong.
My care plan was clearly entered on my record.
I had regular reviews of my care and treatment, and of my care plan.
I had regular, comprehensive reviews of my medicines.
When I used a new service, my care plan was known in advance and
respected.
When something was planned and agreed to, it happened without me
having to chase around for it.
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C. Generic ‘I’
statements
Transitions
When I moved between services or settings, there was a plan in place for what
happened next.
The plan was delivered without unnecessary delays.
I knew in advance where I was going, what I would be provided with, and who
would be my main point of professional contact.
I was given information about any medicines I was taking with me – their purpose,
how to take them, potential side effects
Information about me, including my views and preferences and any agreed care
plan, was passed on in advance.
I was still allowed to see and work with, as appropriate, preferred professionals
who I already knew and knew me.
When I went to a new service, they knew who I was, and about my own views,
preferences and circumstances.
If I moved across geographical boundaries I did not lose entitlements to care.
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C. Generic ‘I’
statements
Emergencies
I could plan ahead and stay in control in emergencies.
I had systems in place so that I could get help at an early stage to avoid a
crisis.
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C(i). Specific
‘I’ statements
The needs of sub-groups of service users
Specific sets of ‘I’ statements will need to be developed for sub-groups of
service users, for whom the generic set does not cover all of the most
important aspects of co-ordinated care.
Sub-sets could include those defined by CONDITION such as:
 children with complex needs, e.g. disabilities
 people with continuing mental illness, e.g. schizophrenia
 people with dementia and their carers
Sub-sets could also include people in defined SERVICE SETTINGS such
as:
 people in residential or nursing home care
 people in end of life care
 people liable to be excluded from services
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D. Purpose – service
organisation perspective
Co-ordinated care means... partnering
with the person to plan, pick and pull
together care, support and treatment. *
* This statement hangs beneath the headline definition, providing an
overarching organisational perspective. This is for commissioners and
service providers to use, in order to drive the way they organise
services to achieve the user definition.
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4. What happens next to complete
the Narrative? Over to you...
The Narrative will be completed when:
• stakeholders have given us their feedback on the
questions we have posed
• local health and social care system leaders adopt the
Narrative as the mark of ‘what good looks like’ , and...
• ... complete their own ‘we’ statements – what they will do
to make a reality of the service users’ definition.
We invite you to make these statements... for example:
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E. organisational ‘we’
statement
Name of organisation
We adopt the definition of person centred coordinated care.
We will work to achieve person centred coordinated care by:




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5. organisational ‘we’
statement
NHS Commissioning Board
The NHS Commissioning Board is the first to declare
its intent to use this Narrative.
• The NHS Commissioning Board will adopt the
completed narrative as their statement of what
integrated care means for patients and service users.
The Local Government Association , Monitor, and the Department
of Health also support the development of the Narrative.
We would like to see all local system leaders (eg Health and
Wellbeing Boards, commissioners and service providers) and key
stakeholders adopt this narrative and make their own statements
of intent to support it.
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5. Your feedback (i)
1. Leaving aside the specific content, do you agree that a common
narrative will help to create a shared purpose and outcomes for
‘integration’ in health and social care?
2. Looking at the current draft Narrative, would this be directly helpful
to orientate your own programmes of work, for example by drawing
on it for your goals, aims and outcomes/benchmarks?
3. What is your reaction to the overall subject: ‘Integration means...
Person centred coordinated care’?
4. What comments would you like to make on the headline definition of
what this means from the service user perspective? In particular, have we
left anything out that you consider vital to such a statement?
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Your feedback (ii)
5. Looking at the generic service user statements, have we got the right
set of categories?
6. We suggest that some sub-groups of people who need co-ordinated
care will have important, specific system demands that cannot sit within
the generic statements. For example, children with disabilities need their
care to work seamlessly with their education and developmental needs.
How do you think we can produce further statements relevant to
these groups? Should it be done at local level or regionally/nationally?
7. Finally, a challenge: could you suggest a ‘we’ statement that could
represent the particular contribution of your type of organisation
(CCG/HWB/LA/service provider) to achieving the central statement?
To respond online see
www.engage.commissioningboard.nhs.uk/consultation/narrative-pccc
Thank you for your time, attention and feedback.
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A narrative for person-centred
coordinated care
www.nationalvoices.org.uk
@NVTweeting
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