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

• 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 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