COPD lung disease sufferers waiting years for diagnosis

People living with severe lung disease in Northern Ireland need faster and more accurate care, a leading charity has said.

One in four patients with Chronic Obstructive Pulmonary Disease (COPD) in the UK wait at least five years for a diagnosis, according to a report from Asthma + Lung UK Northern Ireland.

Up to 42,000 people in NI suffer from COPD, the charity says.

It has called for lung health to become a priority.

“We are hearing shocking stories of people spending years… struggling to breathe, unaware that they have a lung condition which could be managed with the right treatment and support,” said Joseph Carter, head of Asthma + Lung UK Northern Ireland.

“Diagnosis of COPD needs to be faster and more accurate and there needs to be greater awareness of the seriousness of lung conditions and the signs and symptoms to look out for.”

The charity is campaigning for a new lung health strategy to improve diagnostic rates, increase pulmonary rehabilitation services, and reduce the number of respiratory deaths in Northern Ireland.

COPD is an umbrella term for a group of incurable lung conditions which cause breathing difficulties.

This includes chronic bronchitis and emphysema. It affects more than one million people in the UK.

Every patient with COPD should get a yearly flu and a regular pneumonia vaccine, according to the charity.

They should also have a personalised plan to help them manage their condition, be offered optimised treatment for any other medical conditions and support to stop smoking if they need it.

Delays in diagnosis of COPD can result in loss of lung function.

The report, Delayed Diagnosis and Unequal Care: The reality for people with COPD in the UK in 2022, was published on Tuesday ahead of World COPD Day on Wednesday.

Results are based on a survey of 6,500 people across the UK. The sample size for Northern Ireland was small but the charity said it mirrored the rest of the UK results.

Sharon Stewart from Dungiven has first-hand experience of the condition after her father was diagnosed in 2018.

“My dad, Jimmy worked as a mechanic and car sprayer for many years,” she said.

“He was always very outgoing. He played the drums and was a great entertainer. He loved getting out and about.”

When he became ill, there was no clear diagnosis but he had to give up work.

Sharon said her father was on inhalers for two years before he was finally hospitalised and diagnosed with COPD in 2018.

“As a family, we felt Jimmy was not getting the proper level of care,” she said.

“When his breathing worsened, he was no longer able to go out or walk, he was always exhausted and tired.

“His home life was also affected as it took almost one year for a stairlift to be installed. This meant he stayed most of the time upstairs in his bedroom so that he could access the bathroom.”

The illness took a dire toll on him, she said.

“He was not the same person, he couldn’t walk any distance because his breathing was so bad.”

Jimmy died in September 2021 at the age of 74.

The family and community helped raise more than £5,700 for Asthma + Lung UK Northern Ireland.

“We are aware of all the constraints on our health service, but these gaps in care are making things worse,” said Sharon.

More than a third of people surveyed in the report said they were unable to recognise the signs of COPD and around 23% said they were misdiagnosed as their doctor thought they had a chest infection or cough.

Respiratory conditions make up one of the top three killers in Northern Ireland.

Asthma + Lung UK Northern Ireland said people with lung conditions in the poorest neighbourhoods are three and half times more likely to die than those in the richest areas in Northern Ireland.