News and Upcoming Events 

 

 

Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA support group where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved, ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

Covid 19 Health & Wellbeing Hub

For the most up to date information, please visit www.HSE.ie

 

Lung Fibrosis recognised as an extremely medically vulnerable condition in the updated COVID-19 Guidance on cocooning 

The Irish Lung Fibrosis Association (ILFA)​, respiratory consultants, and the Irish Thoracic Society campaigned to have pulmonary fibrosis / lung fibrosis / interstitial lung disease formally recognised as an extremely medically vulnerable condition for cocooning. We are happy to report that the guidelines were updated on 24th April and we are grateful to the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health for listening to our concerns. 

Covid-19 guidance for extremely medically vulnerable groups

 

Frequently Asked Questions and Advice for Lung Fibrosis Patients

ILFA has put together a document with Frequently Asked Questions and Advice for Lung Fibrosis Patients. Please note that some of this information may change as our understanding of Covid-19 increases. For the most up to date information please see www.hse.ie

 

Oxygen Therapy during the Covid 19 Pandemic

Patricia Davis, Clinical Nurse Specialist - Respiratory Integrated Care (RIC), Community Healthcare East (CHEast), Dublin South/Wicklow discusses oxygen therapy during the Covid 19 pandemic. Click here to read more. 

 

Looking after your wellbeing in times of uncertainty

Professor Gaye Cunnane, Director of Health and Wellbeing, Royal College of Physicians in Ireland and Professor of Rheumatology, St James’s Hospital and Trinity College Dublin wote this excelent article for ILFA's Spring 2020 newsletter. Click here to read the article. 

 

Medication Supplies

ILFA Ireland has received communications from Roche Products (Ireland) Ltd and Boehringer Ingelheim Ltd., the manufacturers of anti-fibrotic medications used in the treatment of Idiopathic Pulmonary Fibrosis, stating that they do not anticipate any issues with the supply chain for medication. In accordance with HSE guidelines, they must stock at least 12 weeks or more of forecasted requirements in Ireland. Both companies will continue to actively assess and monitor the situation to ensure continued market supply of the medicines.

 

Virtual Hospital Clinics

Since the Covid-19 outbreak all clinic appointments have been cancelled. Your Interstitial Lung Disease (ILD) team acknowledges that this creates concerns for some people awaiting results of investigations or Multi-disciplinary team discussions. Similarly, we are acutely aware that some people are awaiting decisions to start anti-fibrotic therapy, if it is deemed appropriate. For those on anti-fibrotic treatment, there is the need to know that blood tests are within normal limits and also to receive repeat prescriptions.

In an effort to address some of these concerns, many hospitals are operating virtual clinics or phone clinics when manpower allows this. The ILD team will review your medical record and may telephone you at home to assess your current health status and discuss a plan of care for you. A letter will be sent to your GP updating them of the Virtual Clinic outcome.

Please keep in touch with your ILD Nurse by phone or e-mail should you have any issues that need addressed but bear in mind that many hospital staff may be redeployed and may not be able to respond to you in a timely manner.

Lindsay Brown, Respiratory Advanced Nurse Practitioner, St Vincent’s University Hospital

 

 

COVID-19 Guidance on cocooning to protect people over 70 years and those extremely medically vulnerable from COVID-19

ILFA​, respiratory consultants, and the Irish Thoracic Society campaigned to have pulmonary fibrosis / lung fibrosis / interstitial lung disease formally recognised as an extremely medically vulnerable condition for cocooning. We are happy to report that the guidelines were updated on 24th April and we are grateful to the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health for listening to our concerns. 

 

Covid-19 guidance for extremely medically vulnerable groups

 

 

ILFA Newsletter Spring 2020

The Spring newsletter is availbale to read here. It is packed with news and information on how to stay safe during the Covid-19 pandemic, and has reports of meetings and fundraising events that took place before these activities came to a standstill. We hope you enjoy reading the latest ILFA newsletter. 

 

Help is at hand from ILFA ...

ILFA has received kind offers of help from volunteers around the country to help pick up prescriptions, groceries and messages and also provide a listening ear for ILFA patients who are cocooning.
Please call Gemma on 086 871 5264 if you need help collecting your groceries, prescriptions etc. or even a chat and we will see if we can match you with a 'community hero' or a local vlunteer service. You won't need to leave the safety of your home. 

 

ILFA's Exercise DVD for Lung Fibrosis patients

 

 

 

ILFA's Yoga DVD for Lung Fibrosis patients

 

ILFA's Creative Cocooning Gallery

We would love for you to get creative during your time of self-isolation and show what resilience and wellbeing means. 

We know you’re a talented community so why not send us your paintings, sketches, poems, and short stories and we’ll share them on our Facebook and Twitter pages to inspire others. You don’t have to be an acclaimed ‘artiste’ to join in - perhaps this will be your first time to attempt some poetry, a work of art or even a challenging jigsaw!

Please send a photo of your creative works to info@ilfa.ie

Click here to see the works of art submitted so far. 

 

Mindfulness and Mental Health Resources

Headspace The app can be downloaded onto a smart device and you can try it for FREE. At the moment, there are additional free resources in a section on the app called Weathering the storm that vary in length.

Mindfulness and Relaxation Centre, Beaumont Hospital- there is a fantastic range of meditations and relaxation exercises on this site so hopefully there’s something for everyone!

Stress Control - This website will help provide you with skills to fight stress (for most of us, a mix of anxiety and depression) and boost your wellbeing.

List of counselling and mental health support services available, including supports for different age groups, mobile apps, phone and online resources.
https://www.hse.ie/…/supports-and-services-during-covid-19.…

Advice on how to cope during these challenging times including looking after our physical and mental health
https://www.gov.ie/en/campaigns/together/…

Minding your mental health during Covid
https://www2.hse.ie/…/minding-your-mental-health-during-the…

Information and support for people experiencing mental health difficulties
Information line (01) 284 1166 (from 9am to 5pm Monday to Friday)
www.mentalhealthireland.ie or email info@mentalhealthireland.ie for more information

Free online Stress Control classes available via youtube at 2pm or 8:30pm (Mon and Thursdays x 6 weeks) – started on Monday 13th April
https://www.hse.ie/…/free-online-stress-control-classes.html

If you are struggling with increased anxiety, feeling depressed or have suicidal thoughts, please seek help and contact your GP or go to your local Emergency Department for help

 

 

COVID-19 Guidance on cocooning to protect people over 70 years and those extremely medically vulnerable from COVID-19

While this document does not specifically mention Lung Fibrosis Patients on the Extremely medically vulnerable list, respiratory consultants and ILFA recommmends that all lung fibrosis patients should follow this advice. ILFA has engaged with the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health to have Lung Fibrosis added to the extremely medically vulnerable group. We will keep you updated. 

COVID-19 Guidance on cocooning to protect people over 70 years and those extremely medically vulnerable from COVID-19

 

HSE Video reseources

 

 

 

HSE Advice on Restricted Movements and Self-Isolation

To help stop the spread of coronavirus (COVID-19) everyone has been asked to stay at home. Please read the HSE Advice on Restricted Movements and Self-Isolation

 

Coronavirus Disease (COVID-19) Updates

Trusted websites for up to date factual information about Covid-19 are

 

 

 

The Irish Lung FibrosisAssociation (ILFA)