Co Antrim couple share challenging pulmonary fibrosis battle with health trust

Una and Tom McMillan

A County Antrim couple who have been prominent in raising awareness of a chronic lung condition were welcomed to a meeting of the Northern Health and Social Care Trust board at Antrim Hospital on Thursday morning.

Una and Tom McMillan are members of the Northern Trust’s Pulmonary Fibrosis Support Group. They have spearheaded a campaign to make anti-fibrotic drugs, which can help slow the progression of pulmonary fibrosis, more widely available.

They have also advised the Northern Ireland Assembly on the development of a lung strategy and raised thousands of pounds for research into treatments.

Board members heard that the couple joined the support group in 2016 to help those living with the condition and were soon being contacted for advice and information.

Northern Ireland has the highest prevalence of idiopathic pulmonary fibrosis (IPF) in the UK, with an estimated 1,200 people living with the condition.

There is only one specialist centre in the province, based at Antrim Area Hospital.

Una herself suffers from the devastating illness, which has already claimed the lives of her mother, sister and brother.

Speaking at the meeting, she said:

“I decided to try to make a difference so no other family would suffer the pain we went through as a family.”

Una told the board she has been living with the disease for the past nine years and struggles with a chronic cough as her lung capacity has diminished.

“I get very embarrassed on occasions when I go out for a meal with coughing as everyone looks at me. I am forever apologising to them. Severe fatigue is another symptom.

“My biggest fear is getting Covid. This means minimal contact with others – no shopping trips or days out. I have to wear oxygen. The oxygen is to protect my vital organs as my lungs do not do that job any more. My life has changed so much and changed the life of everyone around me.

“I have to plan how long I will be out, how long the oxygen will last. Holidays abroad are things of the past. Even a hotel break requires oxygen to be delivered on time to my destination. I have to check with my nurse if I am fit to travel and if my accommodation is suitable to take the oxygen. My condition does not allow me to travel on an aircraft as my lungs could not cope with the pressure.

“On many occasions, I and many others in Northern Ireland are being left behind – there is either no delivery of oxygen or reduced quantity at weekends and bank holidays.”

She also noted that the Northern Trust has the largest number of oxygen users in Northern Ireland.

“I have spoken to Mike Nesbitt (Health Minister) about the poor service we in Northern Ireland receive.”

Trust board chair Anne O’Reilly responded:

“We will follow that up as chair and chief executive and make sure we seek to do something about that.”