1. 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 ‘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 2 Respiratory Clinical Pathway Team

3. 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

4. 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

5. 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 COPD and Asthma DH 2011

6. Clinical Guidelines - COPD 13 NICE Quality Standards www.nice.org.uk

7. Outcomes Strategy – COPD and asthma Department of Health 2010, 2011 and 2012

8. Impact Report Pulmonary Rehabilitation£119m Self management£235m Home oxygen£19.6m Early discharge from hospital£34m Non-invasive ventilation£9m DH 2012

9. 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

10. Self management benefits - Asthma Gallefoss et al ERJ 2001; Gibson et al Cochrane Review 2009 NNT = 6 To avoid one admission NNT = 6 To avoid one admission

11. 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

12. 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%

13. 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

14. Hospital admissions and deaths due to chronic obstructive pulmonary disease, intervention versus control group. Bucknall C E et al. BMJ 2012;344:bmj.e1060

15. 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%

16. 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

17. 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

18. 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 Patient Activation Measure

19. 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

20. Patient Listening Event Pati ents and care rs from 24 local ities acro ss NW were invit ed to atten d an inter activ e netw orkin g even t facili tated by servi ce expe rienc e expe rts 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

21. 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

22. 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”

23. “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

24. “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

25. “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

28. 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

29. Triple Therapy ICS/LABA LAMA/LABA Pulmonary Rehabilitation / activity Stop Smoking Support with pharmacotherapy Flu vaccination in “at risk” population Impress 2012

30. ChoiceVotesPercentage I have had my diagnosis confirmed by lung function test performed by a qualified person. 7294% I feel supported to manage my COPD and have the opportunity to discuss how I wish to be treated 4153% I have been regularly offered help and support to stop smoking.2634% I have been offered the opportunity to attend pulmonary rehabilitation. 4356% I know how and when to take my medicines and inhalers properly. 6382% I have a written action plan, rescue medication and know how and when to use them. 2431% I have an annual review of my lung function, medicines, oxygen levels, flu jab etc. 5369% None of the above.23% BLF audit (interim results)

31. 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

32. 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

33. 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

34. 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 ‘light bulb moments’ that are transforming patient experience and care across the North West Respiratory Clinical Pathway Team