Putting Patients in Control: A COPD Patient Passport for Improved Respiratory Care

1. Respiratory Clinical Pathway Team 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 NHS Q.I.

2. Working together to improve respiratory care in the North West Respiratory Clinical Pathway Team • Uniform high level standards of care • Positive patient experience • Enabled and confident commissioners

3. The skimming stone model of engagement in changing times (2011, NWRCPT) National Strategy NW Regional Respiratory Leads Engagement through events Action Plans COPD Dashboard for North West Knowledge Management (Incl. Sharing good practice) NHS NW Best Practice Awards Various organisations in NW Kite Mark for Respiratory Care in NW NW Lung Report Medical Directors, Nursing Directors, COPD and Asthma Leads Patient and Public Involvement Change champions in each health economy Communities of practice 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 NHS Q.I.

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 NHS Q.I.

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

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

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 NHS Q.I.

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

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. COPD Self management education 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 49% Rice KL et al. Am J RespirCrit Care Med 2010; 182(7):890-6. Epub 2010 Jan 14.

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. 44% Bucknall C E et al. BMJ 2012;344:bmj.e1060

16. Readmissions for chronic obstructive pulmonary disease and deaths in successful self managers and others in intervention group. • 42% became successful self managers • Younger age • Living with others 44% Bucknall C E et al. BMJ 2012;344:bmj.e1060

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. Patient Activation Measure Encourage to participate offer information and support Build knowledge and skills using a variety of resources Reinforce encourage support Reinforce encourage support Increasing activation Hibbert et al Health Serv Res 2005

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 Putting patients in the driving seat Arch Intern Med 2007; 167:551 -561

20. Patient Listening Event

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 NHS Q.I.

23. “In the beginning” It takes time to get a diagnosis Know my COPD journey started a long time before the diagnosis or before I saw a health professional I need confidence in local NHS services to help me There was delay in referring me to a consultant (specialist) NHS Q.I.

24. “Living with my chest” Get the relationships right, “show me you care”, involve me in my care Recognize the importance of support groups and networks I need access to pulmonary rehabilitation to keep me healthy I need the right information for me and my carer

25. “When I need help” I need access to the best clinical care and who can help me when I need it most Give me consistent messages Help me to understand and manage my own care NHS Q.I.

26. NHS Q.I.

27. NHS Q.I.

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. Self care support Impress 2012 NHS Q.I.

30. BLF audit (interim results)

31. Review/ Evaluation Patient Leader Training/ yearly workshop Patient Forum 2 Introduction/ CCG Attendance Influencing/ attendance CCG Patient Forum 1 Identification of Patient Leader, commitment from Cluster Leads and allocation to local clinical commissioning group Identification of achievements, local success stories. Annual review of partnership working. Programme review meeting with all patient leaders. North West Respiratory Network Patient Leader Programme Follow up, identification of new areas for development, re engage with patients Spring Engagement with local community based services, meeting with respiratory patients/ BE group in their local area/cluster Tool kit provided 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 NHS Q.I.

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 NHS Q.I.

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 NHS Q.I.

34. Respiratory Clinical Pathway Team 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 NHS Q.I.