Campaigners tell MSPs about life with ‘insidious, incurable’ lung disease

Sufferers of an “insidious” incurable lung disease have called on the Scottish Government to do more to raise awareness of the condition.

James MacLachlan. Picture: Andrew Cowan/Scottish Parliament/PA Wire

Patients with Interstitial Lung Disease (ILD) also want GPs to automatically check the lungs of anyone over 60 when they visit their family doctor.

The condition can be detected by a “distinctive crackle” when doctors listen to the chest, campaigner James MacLachlan said. He believes not all GPs “are fully trained” to look for this.

With awareness levels of the condition low, Mr MacLachlan told MSPs on Holyrood’s Public Petitions Committee that people often delayed going for help when they start displaying symptoms of the condition.

There are no statistics available for the number of people in Scotland with ILD - although its estimated that 30,000 people in the UK are living with Idiopathic Pulmonary Fibrosis, which is one of the main causes.

ILD covers a range of conditions which leads to scarring on lung tissue, making it harder for oxygen to get into the bloodstream.

Sufferers can experience a shortness of breath, but may also have a persistent cough, tiredness and weight loss.

Average survival is said to be three years from diagnosis, with the petition describing it as an “insidious, incurable, progressive disease”.

However the condition can be mitigated by medication, making better diagnosis a priority.

Sufferer Mr MacLachlan, one of those who brought the petition to Holryood, said there was a need to “bring ILD out of the shadows and open it to public awareness”.

He recalled that he had “put down my increasing breathlessness to age and asthma, which I had been diagnosed with some eight years prior to my ILD diagnosis.”

Fellow sufferer Jean Watson told how the condition affected her.

She said: “Things like changing a duvet cover I can’t do, simple things like bending over to tie your shoelaces, you feel a bit dizzy and you end up sitting down again.

“Although I can walk about a bit on the level, stairs are practically impossible so I always look for lifts.

“If I’m going anywhere I plan a route that doesn’t have a slope up the way, but I can cope with a slope down the way.”

She added: “This condition causes a debilitating loss of physical ability, leading to people being unable to care for themselves.

“The impact on their daily live is considerable, from simple daily activities like looking after their house, to experiencing emotional problems and feelings of isolation.

“As this is an incurable condition we feel there is considerable need to raise awareness of ILD to assist earlier diagnosis and create a consistent approach to care throughout Scotland.”

MSPs agreed to look into the matter, with committee convener Johann Lamont saying: “We recognise the importance of what you’ve brought here today and the significance of it.”

Joseph Carter, head of British Lung Foundation Scotland, said: “It is a sad fact that only one in five people who have IPF will go on to live longer than 5 years after diagnosis.

“Much more needs to be done to raise awareness of the terrible impact that lung disease has on people’s lives.

“Lung disease is the UK’s third biggest killer and it poses serious challenges to our NHS. Early diagnosis is key to reducing the number of lives lost to lung disease.

“Through its forthcoming respiratory action plan, the Scottish Government has a major opportunity to give IPF the priority that it deserves in our health service.

“They must seize the opportunity to transform respiratory care services and bring forward the day where no-one is left breathless from lung disease.”