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A Patient Passport for COPDPutting patients in control to manage
demand
June RobertsConsultant Nurse Salford Royal NHS Foundation Trust
Joint Clinical Respiratory Pathway lead NHS North West
A celebration of those ‘light bulb moments’ that are transforming patient experience and care across the North West
Respiratory Clinical Pathway Team
2
Working together to improve respiratory care in the North West
1. Uniform high level standards of care
2. Positive patient experience
3. Enabled and confident commissioners
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)
3Respiratory 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 passportPatient 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 2011Outcomes strategy for COPD 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)• Deaths 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
Putting patients
in the driving seat
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
Self care support
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 patientsSpring
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
• Community of practice –https://knowledgehub.local.gov.uk/group/northwestrespiratoryforum
• @skimmingstones1 (2, 3, 4)
• NHS NorthWest Respiratory
A Patient Passport for COPDPutting patients in control to manage
demand
June RobertsConsultant Nurse Salford Royal NHS Foundation Trust
Joint Clinical Respiratory Pathway lead NHS North West
A celebration of those ‘light bulb moments’ that are transforming patient experience and care across the North West
Respiratory Clinical Pathway Team