The Irish Lung Fibrosis Association (ILFA) has called on the HSE and Department of Health to establish a clinical care programme for lung (pulmonary) fibrosis patients amid concerns their care will be compromised by cancelled or postponed hospital appointments and treatments as a result of the COVID-19 pandemic.
Idiopathic Pulmonary Fibrosis (IPF) is a serious, progressive and life-limiting chronic respiratory illness that up to 400 people in Ireland are diagnosed with every year.
Currently there is no clinical care programme for those diagnosed with the disease – unlike the model of care that is in place for cancer and other serious respiratory illnesses.
Approximately 1,200 patients in Ireland have IPF but an increase in the numbers of people diagnosed with the condition is likely as the population ages.
The charity has also warned that COVID-19 may also lead to future cases given the characteristic type of lung injury associated with the coronavirus infection.
IPF patients develop scarring of the lungs (fibrosis) that gets worse with time that causes reduced lung capacity and ultimately respiratory failure.
There is no cure for the condition. Symptoms of lung fibrosis include breathlessness, frequently a debilitating cough and may require supplemental oxygen to treat low blood oxygen levels.
Patients with pulmonary fibrosis have complex care needs and face many challenges including difficulties getting an accurate diagnosis, access to investigations, medication, oxygen, pulmonary rehabilitation, clinical psychologists and palliative care services.
The Irish Thoracic Society (ITS), which provides education and research insights into health and respiratory diseases in Ireland published their position statement entitled ‘The Management of Idiopathic Pulmonary Fibrosis’ in 2018 and called for a dedicated patient care pathway and the services needed for patient-centred care.
Despite representations to the Department of Health, this was not implemented, while the proposed Programme for Government for 2020 shows no plans to re-examine current care practices.
Dr Aidan O’Brien, President of the Irish Thoracic Society (ITS) said: “The ITS supports ILFA’s calls to have a dedicated care pathway introduced for lung fibrosis patients given the serious, unpredictable nature of this complex lung condition.
“The ITS also calls on the Department of Health to deliver the health resources needed for this vulnerable patient group based on the Position Statement for the Management of IPF, published by the Society in 2018,” he added.
IPF patients and carers have expressed fears for their health and for the future in a new report published by the ILFA which examines the effect of COVID-19 on lung fibrosis patients, carers and healthcare professionals.
The survey had 239 responses in total (including 111 patients, 59 carers/family members and 49 healthcare professionals) and was undertaken in late April and early May of this year.
Speaking ahead of the launch of the report, ILFA Chairman Eddie Cassidy says patients and their families face an anxious and uncertain future.
“Most people in Ireland are getting ready to return to work or return to some kind of normality but this won’t be possible for many of our patients who will remain high-risk and extremely vulnerable because of their underlying lung disease’.
“We feel that under the current circumstances with respiratory health and respiratory illnesses under the microscope that there has never been a more appropriate time for the Government and the Department of Health to take the necessary steps to protect all of our most vulnerable patients in Ireland suffering on a daily basis with serious respiratory problems. Our patients’ unmet health needs must be considered and included at a national level within the HSE strategy and framework.
“The introduction of a clinical care pathway specifically for our patients is critical during what has been an extremely difficult time for them and their families and would provide some reassurance that there is appropriate help, support and treatment available,” he said.
“We conducted extensive interviews with patients, their carers and healthcare professionals to produce this report and each one of these groups highlighted the introduction of a clinical care pathway to receive the same recognition as other chronic diseases as a key issue of importance to them,” she added.
The report also reveals IPF patients have expressed huge concerns in the months ahead as they are set to face increased waiting times to see hospital consultants, expressing further reservations about attending hospital appointments for the foreseeable future.
One patient expressed worries within the report that the expected delay in hospital appointments, consultant visits and treatments would lead to his life expectancy being reduced:
“It could be 12 months before I see a consultant again, even though I had an appointment in the next couple of months. So, my original [diagnosis of] three to five years of life might end up at about one and a half to three years by the time I see a consultant,” they said.
Another patient confided that they were just hoping to survive through the pandemic:
“Truthfully, I’m only praying to God that I live through it. Initially, I was kind of out there trying to keep healthy and infection-free in my lungs and now you get this on top of it. Long term I’d just be glad to be alive.”
Both patients and carers told the ILFA that they felt that further awareness and recognition for the disease in both a healthcare and public setting was needed, with several patients expressing concerns that the disease was overlooked in comparison to other chronic lung diseases.
They said: “Each and every member of the ILFA would just wish that IPF would be recognised as a very, very, very serious illness. Sometimes when you say it to people, I think they think it’s something like pneumonia. I don’t know the amount of people I say about IPF and they all say what’s that? I go on and tell them what it is and to inform them of what it is. And that seems to be the only way at the moment of getting the message across.”
ILFA will publish the contents of their report at their Patient Information Day on July 11. The event aims to provide information about the disease and supporting treatments and services available to patients and families living with the disease.
Danny Sheahan (lead researcher at Invisio) will present the key findings of the report, while the ILFA have also invited clinical psychiatrist Professor Brendan Kelly, a respiratory consultant, a respiratory nurse specialist, and a respiratory physiotherapist to share their perspectives on the day.