A Patient Passport for COPD

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6 Νοε 2013 (πριν από 3 χρόνια και 9 μήνες)

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A Patient Passport for COPD

Putting patients in control to manage
demand


June Roberts

Consultant Nurse
Salford

Royal NHS Foundation Trust

Joint Clinical Respiratory Pathway lead NHS North West

A

celebration

of

those


汩l桴

扵汢

mom敮ts


瑨at

慲a

瑲t湳景rm楮g

灡瑩敮t

experience

and

care

across

the

North

West

Respiratory Clinical Pathway Team

Working together to improve
respiratory care in the North West

1.
Uniform high
level standards
of care

2.
Positive
p
atient
experience

3.
Enabled and
confident
commissioners

2

Respiratory Clinical Pathway Team

National Strategy

NW Regional Respiratory Leads

Various organisations in NW

Engagement
through
events

Knowledge
Management

(Incl.

Sharing good
practice)

Kite Mark for Respiratory Care in NW

NW Lung Report

Communities of
practice

Change champions
in each health
economy

Medical Directors,
Nursing Directors,
COPD and Asthma
Leads

COPD
Dashboard
for North
West

NHS NW
Best
Practice
Awards

Patient and Public
Involvement

Action
Plans

The skimming stone model of engagement in changing times (2011, NWRCPT)

3

Respiratory Board, Asthma Steering Group, Joint Working Group, Expert Panel for Data Analysis,
Medicines Management reference group, HOS
-

AR sub group, SHA
Comms

team

Overview


To discuss self care in relation to improved
outcomes for people with COPD


To gain insight into patient and carer
perspectives of COPD care in NW UK


Use the insights gained to inform clinical practice
and service development


Patient passport


Patient leaders programme


Helping people help themselves


Self care


Co creating health


“Engaged patients
likely to lead to
improved outcomes”

“Nothing about
me
-

without me”

The Health Foundation 2011

Outcomes strategy for
C
OPD and Asthma DH 2011

Clinical Guidelines
-

COPD

13 NICE
Quality
Standards


www.nice.org.uk

Outcomes Strategy


COPD
and asthma

Department of Health 2010, 2011 and 2012

Impact Report


Pulmonary Rehabilitation


£119m


Self management




£235m


Home oxygen




£19.6m


Early discharge from hospital

£34m


Non
-
invasive ventilation


£9m

DH 2012

Why information and knowledge are
important for people with COPD

Late or
inaccurate
diagnosis

Deteriorating
lung function

Inability to work

Diminished
quality of life

Preventable
exacerbations

Emergency
admissions or
readmissions
to hospital

Premature
death

Self management benefits
-
Asthma

Gallefoss

et al ERJ 2001; Gibson et al Cochrane Review 2009

NNT = 6

To avoid one
admission


COPD self management education and
written action plans


Less and variable
evidence of benefit


But NNT 10 to avoid
one hospital admission
in high risk group


Effing et al Cochrane Review 2009

Intervention group patients received a single education session, an
action plan for self
-
treatment of exacerbations, and monthly follow
-
up
calls from a case manager

COPD Self management
education

Rice KL et al.
Am J
Respir

Crit

Care Med
2010; 182(7):890
-
6.
Epub

2010 Jan 14.

49%

Caution needed……


426
randomised

post admission for AECOPD
(44% of planned 1 year target)


Deaths 28
vs

10 (3 x greater in active arm)


D
eaths from COPD 10
vs

3 (3.6
x
greater)


No reduction in admissions (27%
vs

24%)


Fan et al Ann
Int

Med 2012


Hospital admissions and deaths due to chronic obstructive pulmonary disease, intervention
versus control group.

Bucknall

C E et al. BMJ 2012;344:bmj.e1060

Readmissions
for chronic obstructive pulmonary disease and deaths in successful self
managers and others in intervention group.

Bucknall

C E et al. BMJ 2012;344:bmj.e1060

44%

Readmissions
for chronic obstructive pulmonary disease and deaths in successful self
managers and others in intervention group.

Bucknall

C E et al. BMJ 2012;344:bmj.e1060

44%

42% became successful
self managers


Younger age


Living with others

Self management support


will
one size fit all?


To be activated to be effective self managers our
patients require a high level of knowledge skills
and confidence


Around 40% of patients are likely to need
additional support to self manage successfully


By increasing activation step by step our
patients can experience small successes and
steadily build confidence in their ability to self
manage

Hibbard et al Health
Serv

Res 2005
Hellmans

M abstract PCRJ 2012

1. Does not
believe they
have active/
important role
in health care

2. Lack
confidence
and
knowledge to
take action

3. Beginning
to take action

4.
Maintaining
behavior
change over
time

Increasing activation

Hibbert

et al Health
Serv

Res 2005

Encourage to
participate offer
information and
support

Build knowledge
and skills using a
variety of resources

Reinforce
encourage
support

Reinforce
encourage
support

Patient Activation Measure


Comprehensive self
-
management program


Individualised

action plan


Access to knowledgeable
clinician


Guideline based treatment


Regular review and follow up



Reduced
hospitalisation



Reduced unscheduled
care use


Shorter LOS


BUT



Two or more CCM
components needed


Arch Intern Med 2007; 167:551
-
561

Patient Listening Event


Patients and carers from 24 localities across NW were invited to attend
an interactive networking event facilitated by service experience experts


Personal reflection of experience and feelings were captured on post it
notes



Shared in table
-
top discussions to identify common themes and
differences


Post its were transferred to a core pathway which ran along the wall


used to engage whole group discussion in the development of key
messages


Further summarised into “10 messages your respiratory patients want
to give you”


Widely disseminated alongside meeting report

INSPIRE


experience and feelings


What happened to them


How they felt about their experiences


Engagement pact


Say what matters to you


Everyone's experiences are unique


so please
respect them


Listen hard


Be supportive


Results


23 patients and 3 carers representing 11/24
localities (45%) attended the
event


3 key themes emerged throughout the day

“In the beginning”

“Living with my chest”

“When I need help”


“In the beginning”

Know my COPD journey
started a long time before
the diagnosis or before I saw
a health professional

It takes time to get a
diagnosis

There was delay in
referring me to a
consultant (specialist)

I need confidence in
local NHS services
to help me


“Living with my chest”

Recognize the
importance of support
groups and networks

I need the right
information for
me and my
carer


I need access to
pulmonary rehabilitation
to keep me healthy

Get the relationships right,
“show me you care”, involve
me in my care


“When I need help”

I need access to the best
clinical care and who can
help me when I need it
most

Help me to understand
and manage my own
care

Give me consistent
messages





I
have COPD




I have had my diagnosis confirmed by lung function test
performed by a qualified person


I feel supported to manage my COPD. I am actively involved in
my care and have the opportunity to discuss how I wish to be
treated


I have been
regularly offered
help and support to stop smoking


I know the importance of keeping active and
have been offered
the opportunity to improve my activity through exercise and
pulmonary rehabilitation if appropriate


I
know
how and when to take my medicines, and feel able to use
my inhalers and other medicines properly


I have a written action plan, rescue medication and know when
and how to use them


I see my doctor or nurse routinely at least once a year for review
of my lung function, medicines and inhaler technique, flu
vaccination, breathlessness, activity, oxygen levels and my
action
plan




Triple
Therapy

ICS/LABA

LAMA/LABA

Pulmonary Rehabilitation
/ activity

Stop Smoking Support with
pharmacotherapy

Flu vaccination in “at risk” population

Impress 2012

Choice

Votes

Percentage

I have had my diagnosis confirmed by lung function test
performed by a qualified person.

72

94%

I feel supported to manage my COPD and have the opportunity
to discuss how I wish to be treated

41

53%

I have been regularly offered help and support to stop smoking.

26

34%

I have been offered the opportunity to attend pulmonary
rehabilitation.

43

56%

I know how and when to take my medicines and inhalers
properly.

63

82%

I have a written action plan, rescue medication and know how
and when to use them.

24

31%

I have an annual review of my lung function, medicines, oxygen
levels, flu jab etc.

53

69%

None of the above.

2

3%

BLF audit (interim results)


Patient Leader Training/


yearly workshop



Patient

Forum 2


Review/

Evaluation

Introduction/ CCG

Attendance




Influencing/

attendance CCG




Patient

Forum 1

North West
Respiratory
Network

Patient Leader
Programme

Follow up,
identification of new
areas for
development, re
engage with patients

Spring

Identification of Patient
Leader, commitment from
Cluster Leads and
allocation to local clinical
commissioning group


Engagement with local
community based
services, meeting with
respiratory patients/ BE
group in their local
area/cluster

Tool kit provided

Identification of achievements,
local success stories. Annual
review of partnership working.

Programme

review meeting
with all patient leaders.

With support from the
BLF/NWRB each cluster will
hold two patient forums per year
to provide a platform for
feedback and discussion.

Autumn

Expectations externally and
internally to influence and support
service development across the
CCG.

Feedback and review with
SDM/NWDM




Conclusions


Self care programmes can lead to improved
outcomes for some people with COPD


Patient and carer perspectives of COPD care are
important and can be used to drive improvements in
clinical practice and service development


We have some way to go to ensure all our patients
can walk the seven steps to the best COPD care



Additional information and resources


Preeti.sud@northwest.nhs.uk



Community of practice

https://knowledgehub.local.gov.uk/group/northwestrespiratoryforum



@skimmingstones1 (2, 3, 4)





NHS
NorthWest

Respiratory

A Patient Passport for COPD

Putting patients in control to manage
demand


June Roberts

Consultant Nurse
Salford

Royal NHS Foundation Trust

Joint Clinical Respiratory Pathway lead NHS North West

A

celebration

of

those


汩l桴

扵汢

mom敮ts


瑨at

慲a

瑲t湳景rm楮g

灡瑩敮t

experience

and

care

across

the

North

West

Respiratory Clinical Pathway Team