19 May 2022

County Derry families call for action on terminal lung condition

Idiopathic Pulmonary Fibrosis attacks the lungs and has no cure.

County Derry families call for action on terminal lung condition

Fidelma and Mickey McGlone from Draperstown. Mickey has been living with Idiopathic Pulmonary Fibrosis since his diagnosis in 2014.

Idiopathic Pulmonary Fibrosis is a terminal condition, yet doesn't command the public profile of its deadly counterparts. Liam Tunney has been to meet two local families living with the condition, and to find out about efforts to fund research and fight back.

A road side supermarket in Coleraine is an inauspicious setting for the launch of a charity marketing campaign, but there is much excitement as Martin Lynch's milk tanker arrives.

Emblazoned on the back, as well as both sides of its distinctive cab, is the logo of the Northern Trust Pulmonary Fibrosis Support Group.

The group provide support, practical advice and signposting to those living with the terminal lung condition, as well as fundraising for further research.

A sizeable number of group members have turned up, buoyed by the late afternoon sun, to thank Martin personally for his gesture.

Martin Lynch's distinctive bull-nose truck carrying the group's logo and contact details.

Among them are County Derry natives Mickey McGlone and Bridie McCloskey.

Mickey McGlone first started to develop a dry cough back over seven years ago.

The Draperstown man had spent years playing for local club St Colm's GAC Ballinascreen, and had previously lined out for Derry minors and seniors during the 1970s.

Until his diagnosis with Idiopathic Pulmonary Fibrosis (IPF) in 2014, the 69-year-old had been serving as groundsman at Dean McGlinchey Park.

He had also been active away from the club, cutting turf on Slieve Gallion, but within just weeks of his diagnosis, even the smallest task became debilitating.

“The first thing I noticed was having a bad cough for a while and it just got progressively worse. I couldn't walk too far,” Mickey told the County Derry Post.

“It was a worrying time trying to find out what it was, and when you get the diagnosis, it's not nice, while all the time you're going downhill.”

To emphasise how sudden Mickey's health declined, his wife Fidelma recalled his on-field exploits with a few big names on the local football scene.

“My husband played for Ballinascreen and for Derry minors and seniors in the 70s,” she said.

“He never drank or anything. He was one of the fittest men; he played with Martin O'Neill and against Kenny Shiels.

“He give Kenny Shiels a wee dunt one time and sent him into nettles and before the game was over Kenny was asking the referee to protect him.

Mickey once left Kenny Shiels demanding protection off the referee after landing in a bunch of nettles.

“Mickey can do very little now, unless I help him. I have to take the turf and coal in and cut the grass now.”

Awareness of IPF is low, despite medical professionals describing the condition as 'worse than many cancers'.

“If you were diagnosed with cancer, you would have someone sitting outside the door to give you a bit of support, but we had nothing like that,” said Fidelma.

“When we discovered this condition is terminal, we were up to see the nurse, and Mickey said to me 'do you see what's written on that wall?'

“It said 'after diagnosis you have three to five years'. Mickey is an exception to the rule.”

An exception, but also exceptional. Mickey has eagerly thrown himself into a number of planned trials, now held up due to the Covid-19 pandemic.

“Mickey was asked to do a trial to do with the cough last March, but with Covid it got shelved,” said Fidelma.

“Then when things eased a bit in August they got back again, but everything closed down again in September, so he hasn't had the opportunity.

“Even if it doesn't help him, it might help someone coming behind him.”

Members of the group pictured in Coleraine last week.

Also defying the three-to-five-years prognosis is Maghera woman Bridie McCloskey, who says the lack of awareness even resulted in her feeling relieved with her diagnosis.

“I had no idea what it was, I was just happy that it wasn't cancer,” she said.

“I was diagnosed in 2011. It was my fingernails at first. I was at the doctor for something completely different, but I asked him to look at my nails, and immediately he sent me for a chest x-ray.

“In fact, I didn't even know the name of it for years, but I've learnt more through this group, and they are totally supportive with everything.

“We had a connection with Limerick University too. I did an exercise class with physiotherapy students for 12 weeks, which was great.

“There was a 'Sing Strong' project as well to help your breathing. That's about all you can do now.”

PT Gorman presents Martin Lynch with a token of the group's appreciation for his gesture.

In Strabane lorry driver Martin Lynch, the group have a one-man marketing machine, who is delivering themessage across County Derry and beyond.

Martin lost his father to IPF, and after featuring a number of previous campaigns on his vehicle, contacted the support group to offer his services.

“We were going to do some sort of a charity thing in his memory, but the amount of red tape was unreal,” he said.

“So we looked online to see who we could help and the group came up. I offered to put something on the wagon to raise awareness and they said yes.

“I'm just after handing them £40 there. Two boys randomly came up to me and gave me £20 each, and said 'that's for that charity.”

Fidelma and Mickey McGlone at the launch last week.

Although the group's logo and contact details will be viewed by many across Europe, Martin hopes any money raised as a result can be used to help people locally.

“We wanted any money to stay in Northern Ireland. They need every penny they can get. We need to get something sorted, if not a cure, then medication to get it slowed down,” he said.

“This gets noticed all the time, but she's the only one about that colour. It's a bull-nose and there's not that many of them about.

“She's the only one in the country that colour. There's a bad side to that too though – the police know it's me!”

Not merely a vehicle to drive fundraising, awareness has a direct effect on those living with the condition.

“When I tell people at the golf club I don't really feel up to playing, they'll tell me I look great. The outside is grand, the inside is maybe just not so good,” said Bridie McCloskey.

“I can't be bothered trying to explain what it is, so I say I've an oul lung thing. It's better to be able to signpost someone so they can go and check it themselves.”

Tom McMillen speaking to Derry Now last week.

Group Chairperson Tom McMillen said Martin's role in promoting the group to a wider audience was 'incredible'.

“They had very little support as a family and he is helping us bring about awareness of the condition,” he said.

“People see the tanker and make donations to the support group, which are ring-fenced for research.

“Unless you know what's causing the problem, you can't to anything about it, but we need to pay researchers to do that.

“This is the only terminal condition where people do not go straight on to benefits. We have people in their mid-40s diagnosed with this disease who can't work or earn.

“They go to the benefits system and have to jump through hoops. Because they're not on oxygen, the system don't understand that these people are dying.”

One of the group's more pressing campaigns centres around anti-fibrotic drugs that are widely prescribed across Europe and America, but have certain conditions placed on them in the UK.

“The UK governing body – NICE – that advises the UK government on drug distribution, have made a decision that it will not be given to people unless their lung capacity drops to 80%,” said Tom.

“There is another rule that if your lung capacity drops more than 10% in 12 months, they'll take it off you.

“It's inhumane, because this drug has been proven to give people another three to four years on their lives.

“It's almost like your life as an IPF patient is weighed up. Compared to a cancer patient, for example, you're not going to be cured.

“Chemotherapy is £30,000 per session, but you can be cured. An IPF patient is going to die. It feels like you're not worth as much as a patient to the likes of NICE.”

After lobbying, NICE have agreed to evaluate the drug, but the speed of that process means some will die while waiting.

“That evaluation will take 50 weeks. There are two tracks they can take; a slow and a fast track, and they are taking the slow track,” said Tom.

“If they decide to allow it, it would mean three months' lead-in time for the NHS to allow the stock to come in, so that will be October-November 2022 if they start now.

“In that time, people that aren't getting the anti-fibrotic drugs will die.”

For more information on the support group or Idiopathic Pulmonary Fibrosis, visit the group's website or connect with them on social media.

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