Tom and Una met in Belfast when they were just 15 years old. They’ve been married for over 50 years and have three children and two grandchildren. They live on the beautiful Antrim coast, near the Giant’s Causeway. During their working lives they both enjoyed successful careers, Una in nursing and Tom in the Fire Service.
But six years ago, Una was diagnosed with idiopathic pulmonary fibrosis (IPF). The diagnosis was a huge shock, and it started them on a journey neither of them could ever have predicted.
“The despair and desperation that hits everyone with a terminal illness soon turned to action and hope.”
Northern Ireland has the highest prevalence of IPF in the UK, with an estimated 1,200 people living with condition. Despite this there is only one specialist centre in the north of Ireland, based in Antrim Area Hospital.
There was not much here in terms of support. I was determined to dedicate my time and efforts to making life better for Una and others who are going through this devastating illness.
Tom and Una knew that people living with pulmonary fibrosis (PF) deserved better, so they joined the newly formed Northern Trust PF Support Group in 2016 to help others living with the condition. They soon found themselves inundated with requests for advice and information.
“People from all over Northern Ireland started to contact us. It just spread that way as word of mouth went around.”
“We had people coming to us who’d never seen a specialist nurse or been given any information about the condition. So we started making leaflets and got a website sorted so that people had access to the information they needed.”
The support group was a lifeline for many people who’d never had the opportunity to speak to anyone else affected by pulmonary fibrosis.
“When you have a chronic condition, you’re hanging on to every bit of information you can get. That’s why the support group is so valuable because people get the chance to talk to others about what they’re going through and get advice.
“When we have our meetings, someone might mention that they’re with struggling with sleep. Someone else will share what’s helped them sleep better, and then there’s other people listening who will benefit from that advice too.
“Plus, there’s people at different stages of the disease in the group who can all share different perspectives.”
Tom and Una are fierce advocates for the PF community. They spearheaded a campaign to make anti-fibrotic drugs, which can help delay the progress of PF, more widely available. They’ve also advised the Northern Irish Assembly on the development of a lung strategy and raised thousands of pounds for research into treatments.
I was in the fire service all my life, so it’s my nature to want to respond to things, to go towards them – not to run away. That’s exactly what I did.
“At the beginning, Una and I did talk about whether we were doing too much. But Una has always wanted me to help everyone else, not just her. And we are both hugely involved in the work. She shares her story, even though she’s lost family members of her own to this disease. She’s incredible.”
Tom and Una felt there was more that could be done for the PF community, so they decided to apply for full charity status in 2021.
“We asked our community what would be the most important thing that we could do for you and your family if we became a charity, and 85% of people came back and said that they wanted a respite facility where they could have some quality time away with their family.”
The Northern Trust PF Support Group received charity status in June this year and subsequently bought a property in Ballycastle, County Antrim, near the sea. They plan to officially launch it as a respite facility in March next year.
“The idea is that people can go there free of charge to make memories with their family. There’s already been a huge amount of interest in it."
Share what you're going through
The importance of talking remains at the heart of their new charity’s work, and it’s something Tom is keen to share with anyone who’s received a pulmonary fibrosis diagnosis.
The first thing I would say is find a support group. Don’t deal with your diagnosis alone.
"Your thought process will be negative. By speaking to others, you will find some positives. Live for the now. Make memories with your family. Don’t sit at home and stew on it.
“So many people at our support groups say that they wish they’d known about us sooner. There’s a connection between everyone in our community because they know they’re speaking to someone who can understand what it’s like. That makes such a big difference.”
Tom and Una took a life-changing diagnosis and turned into a mission to create a better future for people affected by pulmonary fibrosis. We’re so incredibly proud of everything they’ve achieved.
Do you need advice or information about living with pulmonary fibrosis? Find out more via our website.