Meet the team: #BetterBreatherBuddies
Honorary Consultant Respiratory Physician
Heart of England NHs Foundation Trust and University of Birmingham (joint post)
- England - West Midlands
- Ian Black - Chair Breathe Easy Solihull
- Robin Hales - Patient volunteer
- Helen Beadle - Respiratory Physiotherapist
Pulmonary Rehabilitation (PR) is a programme of exercise and education for people of all ages and abilities with lung disease whose main symptom is breathlessness and/or reduced exercise capacity. It combines physical exercise graded at the patient’s level with discussion and advice on lung health. It is designed to help them self-manage the symptoms of their condition, including getting out of breath. From our previous work we know the peer support offered by the group setting for PR is one of the most valued aspects of the classes.
The prevalence of adult volunteering in Europe is reported to be 22.5%. However, people with long-term health conditions are much less likely to volunteer than their healthier counterparts. One of the key reasons patients volunteer as buddies in PR is to give something back to the service. This fits with why people volunteer with reasons given tending to be altruistic, such as to ‘give something back’ to their community, or to an organisation or charity that has supported them. Other reasons include improving employment opportunities, widening social circles or using the activity as a distraction from problems in their daily life.
Making use of the combined opportunities that volunteering and peer support offers, in 2015 we launched a “buddy” component to our hospital based pulmonary rehabilitation class. Our buddies main role is that of peer support to meet and greet new patients, befriending and sharing experiences and helping with practical tasks such as finding their exercise sheet, clipboard and pen. The role has since expanded to include setting up the class, making refreshments, booking speakers and organising the talks rota for the education component of the programme. The volunteers are keen to develop their role further to support the service in other ways and to be more involved with taking the project to the next level.
Scope of project
Following the principles of the initial study our project will be co-designed and co-delivered with the existing volunteers and service users. The primary areas of focus will be the recruitment and retention of patient graduate volunteers, clear definition of the role of patient graduate volunteers and potential training opportunities. From our previous study we know the transition points along the care pathway are particularly challenging for patients. This is evident from the National Audit figures that shows 40% of patients referred do not attend pulmonary rehabilitation. We are looking to improve the attendance and rate of completion of the PR class, improve patient outcomes and increase the number of patients that continue with exercise at maintenance classes.
Our aim is to draw on our experience of the initial project and to invite volunteers to other key areas of the pathway. This would include the inpatient ward setting and out-patient clinics i.e. the point of referral from Consultant or Nurse Specialist. The PR service currently runs in both hospital and community sites. The patient volunteer programme is limited to the hospital site. We envisage moving the programme into our community sites.
Our study aims to:
- Redesign and test a recruitment strategy for pulmonary rehabilitation volunteers;
- Design and test a training intervention for patient volunteers within the respiratory pathway;
- Extend the volunteer roles to other parts of the pulmonary rehabilitation pathway and other service sites.
Our pilot study enabled us to have our first attempt of co-producing patient information leaflets and a PR website. We now intend to build on this initial work and using the principles of experience based co-design will first develop a training intervention. We will co-designed and co-deliver the training with the existing patient volunteers. We intend to run and evaluate the training with two groups of volunteers. The existing training programme is limited to mandatory recruitment training and does not cover key basics for this role such as communication skills and safeguarding.
The results of our pilot intervention found that patient volunteers were waiting up to six months to complete the recruitment process to become a PR volunteer. During this time some patients found other opportunities to volunteer (with charitable organisations). The current recruitment process has been designed for ‘regular’ volunteers being recruited within the hospital. We aim to look to improve this process with the help of staff, patients and volunteers.
This part of our study will look to pilot the placement of patient volunteers in other parts of the respiratory pathway.
Expected Outcomes and Impact
- To have a better understanding of the patient volunteer role and responsibilities in PR (and possibly other therapies) and in the peer support role.
- To develop a training intervention that meets the needs of the of the volunteer to deliver a peer support.
- To test a methodology for PR volunteering recruitment that could be rolled out across the Trust and other NHS organisations.
How you can contribute
- Assistance in what we should call the volunteer programme - something accessible to all (patients, volunteers, health professionals).
- How we explain the ethics around volunteers and their contribution (not doing paid work - something around scope of practice)
- Ideas around the design of the training intervention
- Defining the relationship between volunteers, healthcare professionals and patient (triad)