Terry Martin has been a member of the EPAP patient advisory group since 2016. Read our interview with him to find out his tips on getting your message across to the right audience and how to face the challenges of managing a campaign.
Terry, could you say a few words about yourself and tell us a bit about your patient involvement?
My name is Terry Martin and I am in my mid-seventies. I live in Scotland in the UK. I am the Chairman of the Bronchiectasis Tayside Support Group, a patient-led activity based group in Dundee. We are attached to Ninewells University Hospital in the city with links to other hospitals and health centres in Eastern Scotland including Perth and Edinburgh. This is my main focus for personal patient involvement, making me very active in my local area. I am also involved in the EPAP patient advisory group, which gives my work a European dimension.
What was the reason for starting up your support group? And why did you want to be involved?
I wanted to become involved in helping to start the Bronchiectasis Tayside Support Group (BTSG) because I was diagnosed with this chronic chest condition in 2015. My lung condition history stems back to childhood asthma and tuberculosis in my early twenties. Having always experienced breathing problems since infancy, on my retirement from a career as a school teacher, I decided to devote some of my free time to volunteering with patient activities in the National Health Service in Scotland.
There was a real gap in the provision of help for people with bronchiectasis in my part of Scotland. Fortunately, I was able to team up with one or two other people affected by this condition and with the help of the national charity Chest, Heart and Stroke Scotland CHSS), as well as Dr James Chalmers, a bronchiectasis specialist from Ninewells Hospital and respiratory staff we identified areas which were suitable for patient led intervention.
A tip here is that it helps to link up with a frontline health charity like CHSS who have a patient focus helpline. CHSS from the very start gave us good advice:
• about how to build our project,
• how to write a constitution,
• how to set up a bank account
• to publicise our local initiative among respiratory patients
We also have a promise of a start-up donation if we can demonstrate that we are a sustainable group and have a viable future. All these are very important issues and as an organisation starting up you can really struggle without such support.
What did you want to achieve and how did you pick your audience?
Our support group wants to promote awareness of bronchiectasis among patients and members of the public. Sharing our own experiences of bronchiectasis involves providing support through information, exercise and social interaction. Naturally, exploring ways of fundraising helps to ensure the sustainability of our group. We make it clear that membership is open to anyone having bronchiectasis or to family, relatives and carers, regardless of age, nationality, political party, race, religious beliefs, disability or sexual orientation.
Our main target group is in-patients attending the respiratory clinics at local hospitals. Within the constraints of data protection we publicise our group through personal contact and through a poster campaign aimed people attending GP and health centres and other public places across Tayside. The constant support of clinical respiratory staff was a revelation to our small team of volunteers. Staff tell other patients of our group, and consequently our membership is expanding steadily. By building a contact network of bronchiectasis sufferers and their families and carers we are defining our own identity as a viable and, most importantly, help provide support.
Please tell us about a particular achievement/well run campaign and what the challenges were?
There have been some challenges to overcome - logistical, educational and emotional.
One particular challenge is IT, to facilitate our Facebook page, Bronchiectasis Tayside Support Group, which one of our members is managing, and we aim to build a web site with the help of the NHS. A good tip for any IT to work is to make sure that you can call upon a member with some skill who will volunteer to oversee and moderate your website and Facebook pages. We in Bronchiectasis Tayside found this a steep learning curve, so be prepared to call in help before embarking on advertising your group and going public. It is central to a patient enterprise to use social media with care and precaution.
You can have an events calendar, newsletter, even a comments and interactive slot with your members. Our committee of eight is a networking hub of energy and dedicated to expanding our contact list. The results of such involvement can be seen through the learning curve we are experiencing in managing meetings, arranging for speakers, handling our group finances. Educating ourselves in the processes of interaction with outside bodies such as health and social care systems is a constant concern. Not least is monitoring the European lung scene. ELF for example is a valuable resource for us.
We constantly get a buzz from feeling useful to others with this condition, and this helps to bond our group closely in friendship and support. We are currently looking into the possibility of a collaboration with Dundee University Botanical Garden. General practitioners can write “green prescriptions” for patients, so we want to encourage this initiative as part of a clean air activity for lung clearance and outdoor exercise in order to improve breathing. This activity is fulfilling and could fill a need among our members for measurable chest and lung improvement. It’s early days but watch this space!
What would be your top tips to get your key messages across/to run a successful campaign?
Finally, our key messages as a patient-led initiative are three-fold:
Share, Speak, Support.
First, we want to encourage people affected by bronchiectasis to join us to explore and share their feelings about chronic cough, breathlessness and exacerbations, as well as navigate the patient path through treatment and medicines.
Second, we hope to encourage self-confidence in bronchiectasis patients by speaking out about our common condition and the burden of treatment, by explaining to health professionals, researchers, the wider public and friends, how we cope. Our members become ambassadors for a better understanding of bronchiectasis as a chronic condition.
Third, our need to be part of a patient group based on supporting each other has to be recognised as beneficial in itself when living with bronchiectasis. As Chairman I am heartened daily when working with my fellow activists to see the positive effects of supporting others through their condition. This is why I am a part of Bronchiectasis Tayside.