Concerns raised over lung fibrosis care

Patients with lung fibrosis are “not getting the basic level of health care they need”, the Irish Lung Fibrosis Association (ILFA) told the joint Oireachtas health committee today (24 April).

The Association called on the Government and the HSE to ensure that patients with lung fibrosis get access to specialist treatment.

ILFA estimate 5,000 people in Ireland are living with lung fibrosis, with over 1,000 new cases every year.

Ms Maureen O’Donnell, ILFA CEO, told the committee that an ILFA survey of over 100 lung fibrosis and post-transplant patients carried out in 2021 found nearly half of patients received no specialty care referral.

“This means they didn’t have access to a respiratory nurse specialist, a physiotherapist, dietician, psychologist, or other specialties to help them manage their condition,” she said.

She added that a clinical care programme for lung fibrosis patients would ensure that patients receive the highest standard of care and equal access to a range of specialist healthcare supports. This would allow, for example, patient access to a specialist nurse, physiotherapy, and psychotherapy, with hospital-based care.

“In the meantime, we want our patients to have access to a pulmonary rehabilitation programme,” said the ILFA CEO.

“Patients with lung fibrosis are excluded from the HSE’s respiratory programme and are therefore not referred to community pulmonary rehabilitation courses. Pulmonary rehabilitation improves patient quality of life and outcomes, along with oxygen therapy, by relieving symptoms and strengthening overall lung health.”