Patient Empowerment in Chronic Obstructive Pulmonary Disease (COPD) Noreen Baxter Respiratory Nurse Specialist May 2005

Definition of COPD Chronic obstructive pulmonary disease (COPD) is characterised by airflow obstruction. The airflow obstruction is usually progressive, not fully reversible and does not change markedly over several months. The disease is predominantly caused by smoking (NICE 2004) COPD produces symptoms, disability and impaired quality of life.

Epidemiology of COPD 1% of the UK population is diagnosed with COPD 50% of presenting patients are correctly diagnosed 25% of the total number of COPD patients are recognised The potential prevalence of COPD in the UK is estimated to be approximately 3 million

Global Impact Only preventable cause of death currently increasing COPD is currently the 4 th leading cause of death By 2020 expected to rank 5 th as a world wide burden of disease

Local Impact 50 practices in North and West Belfast 6 practices involved in the project Total number of patients-19,524 patients Patients on the COPD register-598 patients 75% of patients not diagnosed

Aims To initiate change in practice using evidence based guidelines and protocols Implement a well researched and planned pilot study Provide a seamless carepathway between primary and secondary care from diagnosis to palliation Provide greater patient choice and individualised expert care in the patients home Increase patient satisfaction Provide an efficient and effective patient focused service

Gaps in Services in Community and Primary Care Publics lack of awareness of COPD Lack of early screening resulting in lack of health promotion and prevention Detection of early stages ignored COPD clinics- fragmented care Treatment and follow-up not standardised Seamless care needed addressed No support for staff Slow access to specialist clinics

Gaps in Secondary Care Lack of support for patients / carer on discharge No formal structured education in primary care, community care and secondary care Lack of understanding in the importance of self management advice Importance of referrals for holistic management and home support were not recognised Palliative care needs were not addressed Patients choice and autonomy were ignored

Action in Primary Care Training needs were identified Multiprofessional study days /educational sessions held Health screening for early diagnosis / prevention (30% of patients with COPD) Facilitation at COPD clinics, smoke cessation clinics, health promotion awareness sessions Evidence based standardised care / follow-up Initiate optimal treatment / seamless care Self management strategies

Action in Secondary Care Intensive Home Support Follow up for those with severe disease / NIV Patients commenced on Long Term Oxygen Non attendees at clinics Regular attendees at A/E Follow up for those discharged from A/E Housebound patients referred by GP for management and optimal treatment

Education Package Disease / Symptom and anxiety management Exacerbation management Self management plan Smoking cessation /energy conservation/breathing techniques / nutritional advice / exercise/relaxation Goal setting /appropriate MDT referrals Advice on LTOT/nebuliser /inhalers Sexuality / travel/ benefits Advanced directives. Palliative care issues addressed Contact number

Outcomes 69 patients involved 32% were not readmitted 9% had fewer admissions 41% reduction in readmissions (despite being at the severe end of the disease) 40% of patients had been treated at home for exacerbations

Benefits for the patient Raise self esteem/self worth/ self control Patients are listened to as experts of their own disease initiating individualised care Empowerment,quality, choice and autonomy Provide a holistic approach to patient care Patient / carer satisfaction Palliative end stage care and support Anxiety and depression are identified and addressed Improved compliance with treatment

Benefits for the service Raise awareness Health screening, health promotion /prevention Early diagnosis Improved communication and documentation between secondary and primary care Seamless approach to care. Evidence based with local protocols. Patients expertise are used in education Reduced admission rates Improved access to specialist clinics

Moving On Early Supported Discharge Scheme Community based Respiratory Nurse Specialists Intensive home support to continue Specialist Physiotherapist/Occupational therapist/Dietician/Social worker/Psychologist Medical staff grade working across the interface Respiratory teams working in collaboration Joint working between Trusts/Primary care and community