Specialist centres which aim to provide care to people with the lung disease, idiopathic pulmonary fibrosis (IPF), are in urgent need of more staff and resources, the Irish Thoracic Society has said.
IPF is a chronic disease that leads to the development of scar tissue (fibrosis) in the lungs. It is more commonly known as lung fibrosis and there is no known cause. The condition is terminal - life expectancy from the time of diagnosis is usually between two and five years.
It is more commonly seen in men than women and usually affects people between the ages of 60 and 80, although it can occur in younger people too.
Around 1,000 people in Ireland are living with the condition, and some 400 new cases are diagnosed every year. Evidence suggests that death rates for IPF in Ireland are above the EU average.
Currently in Ireland, there are eight centres of expertise for lung disease nationwide, but according to the Thoracic Society, these need more staff and resources if all patients are to receive the same high standards of care that they need.
It said that these centres need to be resourced with multidisciplinary teams to ensure early diagnosis and optimal care for patients.
"These centres should be structured to ensure fair and equitable access for all patients no matter where they live, and to ensure that patients with suspected lung fibrosis are diagnosed and treated within 16 weeks. Centres currently have significant deficits in terms of resources and the staffing of multidisciplinary teams," the society noted.
It made its call at the launch of a new national patient registry for lung fibrosis and the publication of a position statement on the management of the disease. Both of these aim to increase awareness of IPF and improve care for patients.
Speaking at the launch, consultant respiratory physician, Prof Anthony O'Regan, explained that until relatively recently, there was a lack of effective diagnosis and treatment options open to patients. Hhowever, this has ‘changed dramatically over the past decade' thanks to new therapies and an increase in successful lung transplants.
"These developments have brought real hope to patients, making early diagnosis and rapid referral to treatment more crucial than ever. Unfortunately, as lung fibrosis progresses, patients' needs become more complex and multi-faceted.
"Consequently, we must be able to respond quickly with access to appropriate medical, physiotherapy, nutritional, psychological, social and palliative supports, as well as information on accessing lung transplantation where appropriate," he said.
Prof O'Regan insisted that it is ‘incumbent on the health service to act urgently' to resource all centres of expertise in lung fibrosis to the required standards.
"This should be achieved in tandem with the development of a National Clinical Programme on lung fibrosis to reflect how seriously we take this disease. Only then will patients reap the benefits of a standard pathway of care and access to novel treatments in a way that is fair, equitable and timely," he added.
Also speaking at the launch, David Crosby, who lives with IPF and underwent a double lung transplant in 2016, pointed out that he ‘has travelled the road from a devastating diagnosis through to a life-saving double lung transplant'.
"I know what it means to have the opportunity to have a second chance at life and I have experienced first hand the benefits of being under the care of a team of people with specialist expertise," he said.
He noted that he had access to a nurse specialist, a physiotherapist, a nutritionist and a counsellor, all of whom helped him to manage his condition both physically and mentally.
"Of course, that's not to mention my consultant and the transplant team who gave me a new lease of life. But I was one of the lucky ones. Everyone with a diagnosis of IPF must have access to these supports, regardless of where they live," Mr Crosby added.
The new lung fibrosis registry will help to generate data on prevalence, causes, treatment and the long-term prognosis of those with IPF in Ireland. This will, in turn, inform health service planning and treatment pathways, and will also help in the fields of research and treatment development.
Meanwhile, the Irish Thoracic Society's position statement sets out the standards required to ensure that all patients with IPF have equitable access to diagnosis and treatment in line with international best practice.
For more information on the society, click here
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