The Irish Lung Fibrosis Association is advocating for better care for pulmonary fibrosis
September is pulmonary fibrosis month and time to put the spotlight on this less well known lung disease. The management of pulmonary fibrosis has undoubtedly improved in recent years, but it is still common for people with pulmonary fibrosis to experience delays in diagnosis and difficulties accessing the care and services they need. So how could care for pulmonary fibrosis be improved? Well the folks at the Irish Lung Fibrosis Association (ILFA) had a very good idea – talk to the people involved! Eddie Cassidy, ILFA Chairman, tells us more about why this month ILFA are raising awareness of a need for a national clinical care programme for pulmonary fibrosis in Ireland.
ILFA is the Irish national patient advocacy charity for pulmonary fibrosis. Our aim is to provide support, information and education to the patients and families living with pulmonary fibrosis and to the healthcare professionals working in this field, and to support research into the condition.
The last couple of years have been difficult for the people we support. We did some research early on in the pandemic which highlighted the significant impacts of COVID-19 on the daily lives and wellbeing of pulmonary fibrosis patients, carers and healthcare professionals. As part of that research, we asked people what areas they would like ILFA to focus on in our advocacy work. The response was loud and clear. Patients, carers and healthcare professionals all wanted us to prioritise the same thing; the need for a national clinical care programme for pulmonary fibrosis.
The National Clinical Programmes provide a framework for care delivery in the Irish health service. Unlike other serious lung conditions, including COPD, asthma and cystic fibrosis, there is no National Clinical Programme for pulmonary fibrosis.
Why is this topic so important to the people we support? To better understand the experiences of people receiving care for pulmonary fibrosis, and those providing it, we held an online event with patients, carers, family members, healthcare professionals and industry providers. Those discussions showed that there is a large gap between the level of pulmonary fibrosis care recommended by the Irish Thoracic Society and the experiences of patients. Access to services like pulmonary rehabilitation or dietetic support differed significantly depending on patients’ location. From a care delivery perspective, healthcare professionals are struggling to provide the supports pulmonary fibrosis patients and carers need with the tools they have available. For example, most people with pulmonary fibrosis do not have access to professional mental health supports, despite the significant impacts of this condition on emotional well-being, and respiratory clinicians really feel under pressure to fill this gap.
The need for a national clinical care programme is really important to our members because it would help provide a framework for high quality pulmonary fibrosis care, and ensure equal access to the services patients need regardless of where they live.
Through our discussions we now have an excellent understanding what services patients need and how they would like to access them. Things like mental health supports, dietetic advice, pulmonary rehabilitation, access to a nurse specialist. We need to improve the integration of care between the hospital and the community. Technology solutions like patientMpower have to play a role here too. The pandemic showed how virtual care delivery, like the virtual pulmonary rehabilitation programme, can really increase access to services.
That’s why this pulmonary fibrosis month we are highlighting the need for a clinical care programme for pulmonary fibrosis. There is a lot of work to do but there is so much passion in the pulmonary fibrosis community! If we come together as patients, families, healthcare professionals and providers we can help shape the future of pulmonary fibrosis care in Ireland.
To learn more about ILFA’s work see www.ilfa.ie
Or for more about how patientMpower’s solutions can help support patients with pulmonary fibrosis contact us at info@patientMpower.com