Lung patients in Northern Ireland ‘trapped in vicious cycle of late diagnosis’

PATIENTS with lung conditions in Northern Ireland are “trapped in a vicious cycle of late diagnosis” that causes thousands of avoidable hospital admissions each year, a health charity has said.

In a new report, Asthma + Lung UK Northern Ireland said that better organisation of services could free up over 7,500 hospital beds each year – including 3,000 in the winter months - and save “significantly more” than £10m a year.

Limited access to vital treatments and poor support for patients to manage their conditions were also listed as major problems.

Recommendations in the ‘Saving your breath’ report include ensuring diagnostic tests are funded, improving access to the right treatments like pulmonary rehabilitation (PR) and ensuring people have the correct support to manage their lung condition to keep them well and out of hospital.

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Several families spoke of the powerless feeling they experienced watching their loved ones struggling for breath on a daily basis.

Solveig, a retired dentist from Belfast, lost her husband Ronnie to COPD in 2016 after he fought the disease for over a decade.

A heavy smoker, he was 49 when he was diagnosed with having COPD and had just 30-49% of normal lung function.

“It’s worrying that many people have this disease without knowing it and a delayed diagnosis may mean it gets picked up at a more severe stage,” Solveig said.

Struggling for breath when pushing his young daughter in her buggy uphill, he went from working six days a week to taking early retirement due to his breathing difficulties.

Care from the Respiratory Team at the Ulster Hospital, his GP and a course of pulmonary rehabilitation had helped to keep him out of hospital.

Needing a home stair lift and oxygen, he was told he needed a lung transplant but died from an unexpected heart attack aged 62 because of complications from his COPD.

“He used to say to me ‘people just don’t understand what it is like not to be able to catch a breath’. He used to describe this feeling as ‘drowning in fresh air.’ In the end, the disease took over every aspect of his life, however throughout it all he still managed to keep his sense of humour.

“I’m sharing Ronnie’s story to help raise awareness of COPD as Asthma + Lung UK launch their new report. We need better support for people like Ronnie with COPD, including mental health services, smoking cessation, and occupational therapy to promote independence.”

Anouska Black from Craigavon suffered a near-fatal asthma attack in October 2020.

“My asthma attack was terrifying. I was admitted onto the respiratory ward, where I spent five days on oxygen,” she said.

“One of my lungs almost collapsed and I was minutes away from death.

“Thankfully, doctors saved my life but struggled with my health for a long time after it. I know first-hand how devastating breathlessness can be.”

Needing many hospital admissions, she said more support for patients was needed and action to intervene before people become seriously ill.

Joseph Carter, Head of Asthma + Lung UK Northern Ireland, said too many people were given a diagnosis by their GP without the proper testing and missed out on the proper treatments.

“The Department of Health must take this report seriously and implement our blueprint for change urgently. The hundreds of thousands of us living with a lung condition, and the many more who will develop one in future, deserve no less.

“It is time for a restored NI Executive to prioritise respiratory health and introduce a Lung Health Strategy.”

A spokesperson for the Department of Health said: “The treatment of asthma and lung conditions require preventative, diagnostic and rehabilitation care. We welcome the points made in the report regarding diagnosis, ongoing clinical review and pulmonary rehabilitation and will be working alongside all partners to improve access and quality.”

On the prevention side, they said the Health Minister Robin Swann has made clear his support for Northern Ireland to be included in the UK Government Bill “which aims to create a smoke free generation.

“Our inclusion will be subject to NI Assembly agreement. Free smoking cessation services, including Nicotine Replacement Therapy, are available across NI,” they said.

“The Public Health Agency are also working with HSC Trusts, primary care and voluntary partners to develop a regional lung health plan.

“The issue of respiratory diagnostics has been identified as a key priority area for development as part of this work, and a sub group has recently been established which will be tasked with developing a plan to improve both the standard and accessibility of a range of respiratory diagnostic tests, including spirometry, FNEO testing, gas exchange.”

The improvement plan is also being supported by patients groups including Asthma + Lung UK.

“While there are some clear priorities outlined in this report, this work cannot be progressed much further without additional funding.

“To put the scale of this challenge into perspective, we need an additional £1 billion to maintain health and social care at current levels. It is unlikely that all of this funding will be received, requiring difficult choices to be made across all service.”