Patient Information Day 27th February 2021

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 27th 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

We are delighted to share our new information leaflet on Telemedicine with you.

Telemedicine is the use of technology by a healthcare professional to provide medical services and healthcare. It includes telephone and video consultations (appointments) with a doctor or nurse, and even things like online pulmonary rehabilitation classes with a physiotherapist.

Knowing how to use telemedicine will help you to continue to receive your healthcare safely from a distance. Click the link below to read our new information leaflet. We hope you will find the information useful.

Telemedicine: Telephone and Video Consultations

‘Let’s Talk … The Role of Palliative Care in Idiopathic Pulmonary Fibrosis’ will take place online on Friday 19th February at 2pm.

Palliative care is about maximising your quality of life through symptom management. Our guest speaker is Dr Paul Gregan from Our Lady’s Hospice in Dublin.

Register in advance by calling 086 871 5264 or emailing info@ilfa.ie

ILFA uses an online platform called Zoom to host our online meetings.

If you would like to join any of the online activities organised by ILFA, click here for the instructions to help you get started.

It is relatively simple to join the meeting using Zoom but please ask a friend or family member to help you if you are new to this technology.

You can also call Gemma on 086 871 5264 or email info@ilfa.ie if help is needed.

As a young person living in Lispole, Co Kerry, while attending national school Mike Joe loved singing. An early ambition was to sing with and lead a band. Over the years he continued singing and always in the back of his mind was his dream and lifetime ambition to make a CD.

In 2020 Mike Joe decided it’s ‘Now or Never’ and so he chose the year of Covid-19 to produce his CD and thankfully, with the support and encouragement of his team, he achieved his dream. Delighted to have completed the recording of 15 of his favourite songs, Mike Joe now wants to use his music and CD to help two charities.

JP O’Sullivan, ‘a rogue and gentleman’, from Lispole, a special and lifetime friend of Mike Joe, who he says ‘‘never does what he is told’, as a result, he wants to share the proceeds of his CD to support his chosen charities;

Firstly – ILFA, due to their great work and support as a patient organisation for those living with Pulmonary Fibrosis.
JP has shown great dedication to ILFA for the help and support they gave him and other patients and
families with pulmonary fibrosis. Mike Joe has travelled JP’s journey with him.

Secondly – the Kerry Cancer Support Group for the great work they do in Kerry for cancer patients and because Mike Joe is a Kerryman after all.

Congratulations to Mike Joe on achieving his ambition and warmest thanks to Mike Joe and his pal JP O’Sullivan for fundraising for ILFA and supporting our work. To order your CD or to make a donation, please contact ILFA on 086 871 5264 or JP O’Sullivan on 087 280 9801

The second virtual Patient Information of 2020 took place on 28th November via Zoom.

We are very grateful to our speakers Dr Michael Henry, Respiratory Consultant at Cork University Hospital, Carmel McInerney, Advanced Nurse Practitioner at Ennis Hospital, Debbie Gibbons, Palliative Care Physiotherapist at St Francis Hospice, and Sandra Murphy, Dietitian at the Mater Misericoridae University Hospital in Dublin, and Laura Grehan and Gerry Redican who achieved great fundraising success for ILFA in 2020.