Programme Where are we now? Current PCT performance within SHA No decision about me, without me: Local patients views Are there alternative ways of delivering care Round Table Discussion

Experience and Involvement ‘Getting the Best From Your Respiratory Patients’

Impact of Respiratory Conditions 82% tell us that their lung condition stops them from doing things that they want to do, or things they once did. Work Hobbies and Interests Social Activity Practical Tasks (Housework, DIY, Gardening) Relationships

‘Everything in my life has changed. I had to give up a job that I had worked all my life’ ‘Gardening is now a chore, not a pleasure…’ ‘Managing chest clearance at the end of the afternoon interferes with daily life and restricts what I can do….’

70%-80% of people with Long Term Conditions can be supported to self-manage (DH 2005) IPSOS/Mori poll 2009 showed that 90% of people with long-term conditions feel comfortable taking responsibility for their health. Kings Fund ‘10 Priorities for Commissioners’ May 2011 includes ‘Active Support for Self Management’ and sets out the evidence for benefits. ‘Self-management support can be viewed in two ways; as a portfolio of techniques and tools to help patients choose healthy behaviours; and a fundamental transformation of the patient- caregiver relationship into a collaborative partnership’ Helping People Help Themselves; De Silva, 2011; The Health Foundation

Information at Time of Diagnosis 33% say that they were either ‘dissatisfied’ or ‘very dissatisfied’ with the information that they received about their lung condition when first diagnosed

‘ Everything was explained in detail and I was very reassured by the attitudes of all concerned’ ‘ Did not get any information at diagnosis – had to experience an exacerbation and admission to hospital before I received any information at all…’

Out-patient Appointments 46% have to pay for parking when visiting hospital for appointments 53% have trouble walking from the car park to their appointment 47% struggle to find a parking space 25% have to stop for breath between waiting area and consultation room.

‘….It can be a long journey from the car park, up the stairs… That long walk and wait in a chilly corridor can exacerbate my condition’ ‘… There are now plenty of disabled spaces outside the chest clinic and the doctors’ room is near reception’ I try not to have to visit the hospital because it is stressful…..’

Experience of Respiratory Services Community Respiratory Teams High levels of ‘satisfaction’ with care and treatment received from Healthcare Professionals In-patient 84% Out-patient 92% Respiratory Nurse 95% GP 91% Community Respiratory Team 88%

Self-Management Plans 30% have self-management plan which they use regularly 13% have a plan which they ‘refer to occasionally’ 31% stated that they had not been offered a SMP 26% have never heard of ‘self-management plans’

‘Having a self-management plan is great because it gives me a degree of control….’ My self-management plan, along with pulmonary rehab and regular exercise helps me to feel more in control of my own condition’ I have a self-management plan jointly worked out between my GP and me, but unwritten. Also the benefit from many years of living with my condition’

Anticipatory Prescribing 58% of respondents have medication at home to use if they have a flare-up/exacerbation…… ….. But 45% of these do not have self-management plans. 24% of people with self-management plans do not hold emergency medication

Evidence for Efficacy of Anticipatory Prescribing Several studies have considered the impact of self-management that includes anticipatory prescribing. ‘Self-treatment of exacerbations incorporated in a self management programme leads to fewer exacerbation days and lower costs.’ Effing T et al. ‘Cost-effectiveness of self-treatment of exacerbations on the severity of exacerbations in patients with COPD (Thorax. 2009).

‘This is ideal because it enables you to start treatment early, thus hopefully preventing a more serious problem….’ ‘I have a rescue pack but also consult with my community matron regarding steroids’ ‘I have asked, but it was passed over’

Decision-making 51% say they feel fully consulted and given the right information to make choices about treatment 10% stated that decisions were made about them and they are told what is going to be done. 14% are consulted but don’t feel they have the information required to make informed decisions.

‘ I think it is very important that we feel involved, because working together we will achieve the best outcome ’ But……. 13% are happy for the healthcare professionals to make the decisions as they are the experts.

Pulmonary Rehabilitation 34% of respondents had completed pulmonary rehab and have access to follow-on exercise. 18% have completed the course with no access to follow-on exercise. 38% have not been offered pulmonary rehab 2% had started a course but did not complete due to ill-health

Cochrane Review of Impact of Pulmonary rehab on Hospital Admissions ‘Evidence from nine small studies of moderate methodological quality, suggests that pulmonary rehabilitation is a highly effective and safe intervention to reduce hospital admissions and mortality and to improve health-related quality of life in COPD patients who have recently suffered an exacerbation of COPD.’ Published Updated July 2010

‘Cannot speak too highly of this excellent service which takes away fear and builds up fitness and makes you realise that you will not break if you move and puff a bit’ ‘I would recommend this service to anyone with lung problems’ ‘I had a preliminary test was too fit to undergo the course’

If you could change one thing…… 1. Increased access to Pulmonary Rehab 2. Timely Information 3. Exercise Opportunities 4. Better access to services 5. Lighter and more portable oxygen 6. Better public awareness of lung disease 7. Information about support groups 8. Anticipatory prescribing 9. More involvement in care-planning 10. Thorough diagnosis

Key Messages from Contact with Patients Understand the link between self-management and staying well and share the desire to reduce unnecessary admission to hospital Willing to use their experience to improve future outcomes for themselves and others Pleased that their experiences are being listened to and involved and are prepared to contribute to process of change

Support from the BLF in the West Midlands Support for anyone affected by any lung disease Commitment to implementation of COPD Strategy Support to the facilitation of the ‘patient voice’ in service commissioning and review