What support is out there? Josie Murray Respiratory Coordinator

Why do we need to know?  Scottish Centre for Telehealth & BLF Remote Pulmonary Rehabilitation Project  Want to examine maintenance  And not just maintenance but ongoing support

Why do we need to know?

 Voluntary sector organisations were asked what support they could offer  We said it would seem sensible to map what was in existence first…

What do we already know?

Breathe Easy Groups

An opportunity to meet other people affected by lung conditions  Free to join  Open to patients, carers, family members, friends  Activities include guest speakers, outings, running info stands, fundraising events  Groups aims: to give informal support, to raise awareness about lung conditions and the issues around living with a lung condition

CHSS Affiliated Groups

 What we offer:  £500 start up grant  Free Insurance; including patient led exercise  Affiliation Resource Manual  Local community support worker (North East Scotland, South West Scotland, Highlands and Islands)  National steering group – opportunity to meet other groups’ committee members in Scotland  Annual information day – opportunity for all groups to come together in Scotland; to learn and share  Publicity materials  Fundraising – opportunities to partnership with CHSS to create funds for the group  Support for any group of motivated individuals to set up and sustain peer support through a variety of activities and models of self management

Local Authority Resources  Local Gyms  Over fifties programme  Seated exercise programmes  Exercise referral schemes  Disease targeted excercise programmes  Health Improvement Team initiatives

Other Initiatives  Paths for All  Ramblers  Weight Watchers  Befriending Services  Other walking groups  Green Gym  Private Gym

So we would like to know…  Where do you work?  What services are on offer?  In your immediate locality  Specifically for post pulmonary rehab  Who offers them?

Patient Experience ‘No matter what tunes the bagpipes within my chest are playing I know that after some exercise and a blether with my friends I will be feeling much better’ ‘There was nothing after pulmonary rehab. That in itself made me feel worse. So we [PR graduates] set up a group.’ ‘the class has provided me with support in caring for someone with COPD’ ‘our yoga instructor is brilliant. She knows what to do, and she knows it isn’t easy with a bad chest, but she pushes us to be the best we can be’

What would patients want after PR? ‘an instructor who was knowledgeable about lung disease’ ‘Class environment would have people at a similar level and peer support’ Some people were in favour of exercising in local gyms, some were not Some people said they would be happy to be in a class with people with other long term conditions.

Thank you for you help!

Contact  Josie Murray  Respiratory Coordinator  Chest, Heart & Stroke Scotland  65 North Castle Street  Edinburgh  EH2 3lT   