New Infographics to explain Idiopathic Pulmonary Fibrosis (IPF)

ILFA has a new set of infographics to help raise awareness of what Idiopathic Pulonary Fibrosis (IPF) is, the signs and symptoms of IPF and the treatment of IPF.

An online World Café-style workshop with patients, carers, family members, healthcare professionals and industry representatives will take place via Zoom on Saturday 17^th April for approximately 3 hours.

The workshop will allow stakeholders to share ideas on how to address the needs and priorities of the pulmonary fibrosis community. We want to gather this data to help us campaign for a dedicated Clinical Care Programme for Lung Fibrosis. Such programmes exist for other serious health conditions and have dedicated health funding. A structured clinical care programme with a standard model of care is needed to meet the healthcare needs of our patients. It is even more relevant now, as it is anticipated that there may be an increase in the incidence of pulmonary fibrosis from COVID-19 infection.

If you would like to take part in the online ILFA World Café, please register your expression of interest by emailing info@ilfa.ie or calling 086 871 5264.

This event is made possible thanks to funding from the Community Foundation of Ireland and RTE Does Comic Relief.

ILFA is delighted to announce a new online Sing Strong for Pulmonary Fibrosis online class for patients and carers. A 12-week pilot programme will be delivered once a week by Ciara Meade (Choir Mistress) and her colleague Roisin Calahan (physiotherapist) will assist. Classes will start at the end of April and will last approximately 60-70 minutes each.

Research has shown that singing for lung health classes that are delivered by a trained specialist provided valuable psychological and social benefits to people living with respiratory conditions. Some of the benefits include
– improvement breathing control
– better management of breathlessness
– improved posture
– relief of anxiety
– fun, enjoyment and social interaction

You do not need to be a good singer or have singing experience. The classes will take place online and everyone will sing (muted) from the comfort of their home, while training and exercising their breathing muscles under the expert guidance of a choir mistress.

This activity is supported with funding from Air Liquide Healthcare Ireland and BOC Healthcare Ireland. We are enormously grateful for their kind support.

Please contact ILFA on 086 871 5264 or email info@ilfa.ie to register.

ILFA’s Virtual Exercise Class for lung fibrosis patients takes place every Monday and Thursday 11am via Zoom.

The clasess are led by Gordon Cagney (Senior Respiratory Physiotherapist) at University Hospital Limerick and you can join in from the comfort of your home.

Call 086 871 5264 or email info@ilfa.ie to register in advance to join the class.

Physiotherapy students at University Hospital Limerick recorded this exercise video to help patients who want to exercise more regularly between classes.

Click the link for instructions on how to use Zoom to join online meetings and events hosted by ILFA.

Remember to register in advance to join us for our online events and activities.

Call 086 871 5264 or email info@ilfa.ie

Here is the recording of the ILFA Patient Information Day that took place on Saturday 27th February 2021.

Sincere thanks to our speakers for excellent presentations and to Justin Dawson for providing the technical expertise to deliver this event.

https://youtu.be/IHwRwAN8V-c

“Let’s Talk … Singing for Lung Health” will take place on Wednesday 24th March at 3pm with Ciara Meade, Choir Mistress with Sing Strong.

Join us to learn more about the health benefits of singing for lung health and breathing.

We will also discuss the launch of a new virtual pilot programme on singing for lung fibrosis patients starting in April 2021.

Please register in advance by calling ILFA on 086 871 5264 or emailing info@ilfa.ie

Please take the 2021 ILFA Research Survey via the following link http://bit.ly/ilfaweb or by calling 021 245 5070

Last year ILFA conducted a research survey to better understand the personal challenges faced by our members; patients, carers, healthcare professionals and other stakeholders during the first wave of the pandemic. We received over 200 responses and are grateful to everyone who took part.

This year, we are conducting a survey to understand how you are managing in Wave 3 of the pandemic. We would be very grateful for your input if you are a patient, carer, family member, lung transplant recipient previously diagnosed with IPF or a healthcare professionals working in respiratory medicine.

Closing date 9th March 2021

The next ILFA Patient Information Day will take place online via Zoom on Saturday 27^th February at 11am.

Speakers for the event are;

– Dr Kate O’Reilly, Respiratory Consultant, Mater Misericordiae Hospital

– Professor Bernard Mahon, Professor of Immunology, Maynooth University

– Professor Simon Walsh, Consultant Radiologist, National Heart & Lung Institute, Imperial College, London

– Paula Ryan, Respiratory Advanced Nurse Practitioner, University Hospital Limerick

– Gordon Cagney, Physiotherapist, University Hospital Limerick

– Moya Brennan, Singer, composer and musician

Please register in advance using this link http://bit.ly/3jqmLf3 or alternatively contact Gemma by telephone on 086 871 5264 or email info@ilfa.ie for this free event.

In March 2021, ILFA was invited to join an online Stakeholder Briefing meeting for an update on the COVID-19 Vaccine Allocation Strategy with Minister Stephen Donnelly, Professor Karina Butler (Chair of the National Immunisation Advisory Committee), HSE staff and other patient organisations. We were grateful to hear the rationale for the prioritisation strategy and to have the opportunity to submit questions to the experts. The meeting was valuable and informative.

The development of effective COVID-19 vaccines in such a short time represents major progress in response to the pandemic. The evolving real world experience of large populations being effectively vaccinated has resulted in a decrease in COVID-19 hospitalisation rates. While this is hugely encouraging and reassuring, we all need to continue to follow public health guidance and adhere to social distancing and hand hygiene measures to ensure we stay safe.

As vaccine supply is currently limited, there is a need to prioritise those groups at greatest risk of illness, hospitalisation and death due to the coronavirus. The National Immunisation Advisory Committee has issued the updated COVID-19 Vaccine Allocation Strategy based on evidence and an ethical framework to ensure fairness and equity in deciding who should get the vaccine first.

The plan is to target vulnerable groups considered to be most at risk and keep them safe. Patients aged 16-69 years with severe pulmonary fibrosis are included in Cohort 4 and will receive the vaccine directly after those aged over 70 years. ILFA submitted a question regarding the definition of “severe” pulmonary fibrosis as mentioned in the allocation strategy and highlighted the risk of an acute exacerbation for pulmonary fibrosis patients. We await clarification and will update you when possible.

We also asked if carers/spouses of pulmonary fibrosis patients would be prioritised for the vaccine. At this time, priority is given to pulmonary fibrosis patients and other high risk patients. As the vaccine supply increases, caregivers will be called for vaccinations.

The HSE will be responsible for the implementation of the vaccines (how, when, where). The priority list is under constant review.

You can read more on the Allocation Strategy on gov.ie/covid19vaccine