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

NEWS and EVENTS

 

Volunteers needed!

Ho Ho Ho!!! We know its early to think about Christmas but ILFA is delighted to announce our partnership with the 2019 Dublin Santa Dash and we need your help!

Would you like to volunteer your time and help raise funds for ILFA as well as having a great day out? 
 
We need volunteers to help the organisers on the day, as well as runners, joggers and walkers to take part in the festive 5k and 10k course on Sunday 1st December on Dollymount Strand, Dublin.
 
Please contact ILFA if you want to help out or take part (Tel 086 871 5264 or email info@ilfa.ie).
 
We guarantee you will love it !!!

 

ILFA's next Patient Information Day

The next ILFA Patient Information Day will take place on Saturday 19th October from 10am to 2pm at the Crowne Plaza Hotel, Northwood, Santry Dublin.

All are welcome to this free event. 

Our speakers will include;
- Dr Michelle Murray, respiratory consultant at the Mater University Hospital
- Lindsay Brown, respiratory nurse specialist at St Vincent's University Hospital
- Petra Grehan, respiratory physiotherapist at the Mater University Hospital
- Dr Jennifer Wilson O'Raghallaigh, clinical psychologist at Beaumont Hospital
- Professor Bernard Mahon, Biology Department at Maynooth University
- Carita Bramhill, research coordinator at St Vincent's University Hospital
- Sonia Morrison, Air Liquide Healthcare
- Adrian Sheehan, BOC Healthcare Ireland

We hope you can join us to learn more about pulmonary fibrosis.


ILFA is funding a Lean White Belt Programme for healthcare professionals

Callng all healthcare professionals …

Do you have an idea that could improve the clinical care and management of pulmonary fibrosis patients at your hospital/clinic?

The Irish Lung Fibrosis Association (ILFA) is delighted to announce a one day course on ‘Lean White Belt Programme’ for healthcare professionals working with pulmonary fibrosis patients. The course will be delivered by two Lean Academy Black Belt Practitioners and will take place at the Mater Hospital in Dublin in January 2020 (date to be confirmed). The Irish Lung Fibrosis Association (ILFA Ireland) is currently seeking expressions of interest from healthcare professionals working with pulmonary fibrosis patients who would like to take part in the programme. ILFA will cover the costs of the course and CPD and CEU points will be awarded to participants.


“The Irish Lung Fibrosis Association is planning to hold a one-day intensive introduction to Lean Six Sigma for Healthcare professionals. This includes nursing, medical and allied health care professionals working in respiratory medicine. It is envisaged that a team will then undertake the professional certificate in Lean Six Sigma and develop an improvement initiative for pulmonary fibrosis patients. This quality improvement initiative may be linked to improving referral times, linking patients in with pulmonary rehab, ensuring patients attend an oxygen clinic or what you think is needed in your area for pulmonary fibrosis patients. For more information, please see the Lean Academy website: www.leanacademy.nmhs.ucd.ie

Please forward your expression of interest to info@ilfa.ie by 6th August. Places are limited so please apply early. We look forward to hearing from you.

 

ILFA's World Cafe on Palliative Care and Planning for the Future

In June 2018, the Irish Lung Fibrosis Association (ILFA) held its first meeting on Palliative Care and Planning for the Future with our stakeholders. The aim of the meeting was to explore the palliative care and future care planning needs of people with pulmonary fibrosis (lung fibrosis), and to share ideas on how best to address these needs. The meeting was facilitated by Anne-Marie Russell and Tony Shone. Adopting a ‘World Café’ approach patients, family members, healthcare professionals working in hospitals, hospices and community settings, representatives from the clergy, the Irish Hospice Foundation, and pharmaceutical and oxygen companies contributed to the discussions. 

The topics discussed were;

(1) Practical planning for living with Idiopathic Pulmonary Fibrosis (IPF)

(2) Palliative care needs and management of symptoms

(3) End of life considerations including home, hospital and hospice care at the end-of-life, and spirituality needs

(4) Psychological needs and support for living with IPF

(5) Acute exacerbations and transplantation concerns

(6) Legal matters

After the meeting, a report was produced and shared with the participants to get their input and incorporate their feedback. The aim of this report is to share with you the information that was discussed at the meeting and steps we have taken since the event. You can read the report here.

 

Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study   

Three pulmonary fibrosis groups in Ireland contributed to this important research paper entitled 'Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study' that was recently published in the European Respiratory Journal Open Research.

We are grateful to everyone from the Dublin, Kerry and Midland Support Groups for taking part in focus group discussions and sharing thier perspectives on a range of topics relating to living with pulmonary fibrosis. 

Click here to read the full paper.

 

Tip of the week

Heartburn / acid reflux

There is a higher incidence of gastro-esophageal reflux disease (also called GERD, acid reflux or heartburn) in patients with IPF compared to healthy individuals and those with other lung conditions. It is thought that GERD might promote further lung fibrosis if untreated. Tell your doctor if you develop acid reflux, heartburn, nausea, or if you notice an increase in these symptoms.

Click here to read more tips from 2019. 

 
 

Inspirational Quote of the Week

"That's one small step for a man, one giant leap for mankind." Neil Armstrong

Click here to read more inspirational quotes featured in 2019. 

 

 

Research Funding 

The Irish Lung Fibrosis Association (ILFA Ireland) is pleased to announce funding of €20,000 for research into Idiopathic Pulmonary Fibrosis (IPF). Healthcare professionals and scientists working in respiratory medicine in Ireland are invited to submit a Research Bursary Application Form by 28th June 2019.

For more information, please contact Gemma on 086 871 5264 or email info@ilfa

 

VHI Women's Mini Marathon

The VHI Women's Mini-Marathon will take place in Dublin on Sunday 2nd June 2019.

Team ILFA will meet at 12.30pm at the Mespil Hotel, Mespil Road, Dublin by the canal, in advance of the mini-marathon, for a group photo.

We will leave for the start line at 12.50pm sharp.

After the mini-marathon we will meet upstairs in the Duke Pub on Duke Street, just off Grafton Street (beside the side entrance of Marks and Spencers) for tea/coffee and sandwiches.

We look forward to seeing you all.

 

 

Cork City Marathon relay event 2019

The Cork City Marathon team relay event will take place on Sunday 2nd June and we're so excited!!! ILFA has six teams taking part and we're delighted to introduce them to you with short pieces written by the team captains.

Team ILFA 1 was put together to raise awareness of the pulmonary fibrosis patient's journey. The team members are the inspirational David Crosby who was diagnosed with Idiopathic Pulmonary Fibrosis and received a double lung transplant in 2016. David has since completed 3 full marathons, New York City Marathon, Berlin Marathon and London Marathon and has his sights set on Tokyo, Boston and Chicage to join the 'Super Six' marathon club. Joining David for the Cork marathon relay event are his respiratory consultant - Dr Oisin O'Connell, his respiratory nurse specialist - Lynn Fox, his transplant surgeon - Professor David Healy and ILFA volunteer - Nicola Cassidy.

Click here to read more ...

  

Publication of the Human Tissue Bill

2/5/2019 Statement from the Irish Lung Fibrosis Association

The Irish Lung Fibrosis Association (ILFA), the national charity supporting patients diagnosed with idiopathic pulmonary fibrosis (IPF), welcomes the introduction of a soft opt-out organ donation system in Ireland.

IPF is a rare, chronic, progressive, and debilitating lung disease of unknown cause that results in irreversible scarring of the lungs and low oxygen levels. A lung transplant is the only effective treatment for IPF, but this is not a suitable option for everyone.

ILFA has campaigned for an opt-out organ donation system for many years and we are optimistic that this important legislation will change peoples’ lives going forward. In 2008, ILFA’s late patron Senator Feargal Quinn, wrote a Bill entitled the 'Human Body Organs and Human Tissue Bill'. Feargal firmly believed that an opt out organ donation system would have the potential to increase the number of organ donors and life saving transplant operations that could be carried out. ILFA would like to pay tribute to and acknowledge the great contribution of our dear friend and patron Feargal Quinn as the Human Tissue Bill is published.

ILFA will continue to campaign for
• additional resources, infrastructure and staff to support
• organ donation, organ retrieval and transplantation services at the national transplant centres
• an ongoing, well-resourced and inclusive public awareness campaign to educate society and individuals of the importance of discussions on organ donation and the opt-out consent system.
• dedicated resources to provide optimal standards of care for patients undergoing pre-transplant assessment and those requiring post-transplant care.

Sincere thanks to the Minister for Health Simon Harris TD, Department of Health Officials, ODTI and HSE staff for their work progressing the Human Tissue Bill.
#organdonationsaveslives

 

 

Rest in peace Feargal Quinn   

The Irish Lung Fibrosis Association is sad to inform you that our esteemed patron Feargal Quinn has passed away.  

Feargal was a patron of ILFA for many years and we were honoured to know and work closely with him. Feargal was a true gentleman and was deeply committed to his ILFA role; he helped launch ILFA’s 2000 Steps a Day Exercise Programme and ‘The National Patient Charter for Idiopathic Pulmonary Fibrosis’, he also appeared in the ILFA exercise DVD and encouraged patients to stay motivated and determined, he participated in ILFA's ecumenical service of prayer and reflection, and he attended a number of ILFA’s Patient Information Days and spoke at the events.

In 2008, Senator Feargal Quinn wrote the 'Human Body Organs and Human Tissue Bill' and ILFA Ireland looks forward to the introduction of the opt-out organ donation system soon. This will be a great and fitting legacy to Feargal’s tremendous advocacy work.


Feargal radiated a special warmth and great kindness and he was always eager to engage with the ILFA committee and patients and learn about their experiences. We have lost a wonderful friend and patron. Please remember Feargal and his family in your thoughts and prayers.


May he rest in peace.

 

Namaste! 
ILFA's new Yoga Exercise DVD for People with Lung Fibrosis

ILFA’s patron, Michael Darragh Macauley, Dublin GAA footballer and yoga instructor, kindly helped us produce a yoga exercise DVD for people with lung fibrosis.

Yoga can provide health benefits to people with lung fibrosis through improved breathing, relaxation, and improvements in mobility and flexibility. There are two levels of exercises featured which are suitable for beginners and those who feel they can progress to a more advanced stage.

Michael Darragh said “In the video we go through a series of exercises that can help people manage their health and cope with the challenges of living with the condition. The great thing is that the exercises can be done whether seated or standing and can be adapted to suit each individual’s abilities. People can go at their own pace and no one gets left behind.”

You can watch the video online here, on ILFA’s YouTube channel and you can order your own copy from ILFA. Please call 086 871 5264 or email info@ilfa to order a DVD.  
 
This patient resource has been made possible with the kind support of Three Lakes Partners. Sincere thanks to Michael Darragh Macauley, Matt Cullen, Pamela Martin and Evelyn Cooper for taking part in the Yoga DVD. We hope you enjoy this new patient resource. 
 

 

 

The 2019 Denise Cassidy Memorial Prize for Excellence in Healthcare

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around" - Leo Buscaglia

Would you like to honour your lung fibrosis healthcare hero?   

ILFA is excited to announce the 2019 Denise Cassidy Memorial Prize for excellence in healthcare. This award recognises and celebrates the kindness, compassion and humanity of a hospital healthcare worker to a lung fibrosis patient or their family. Patients and carers are invited to nominate a person who showed you or your loved one a special act of kindness that helped you cope with your illness better.

Please fill out the nomination form below and tell us why your healthcare hero deserves to be honoured. You can nominate a doctor, nurse, physiotherapist, social worker, counsellor, dietician, pharmacist, healthcare assistant, member of the chaplaincy team, clerical worker, catering or cleaning staff - in fact anyone who works in a hospital. Everyone who is nominated will receive a certificate of excellence and the overall winner will receive a special commemorative Dublin crystal award.

The award is named in honour of Denise Cassidy who was diagnosed with IPF at the age of 56. Denise led a happy, busy, healthy, sporty and active life. She loved badminton, running, walking, gardening and socialising. Her symptoms developed out of the blue and she developed increasing breathlessness and a cough. After many difficult and frustrating months of hospital admissions, Denise was eventually diagnosed with IPF and placed on the lung transplant list. During her illness, Denise met many kind, friendly, caring, and dedicated healthcare staff and other lung fibrosis patients who helped and supported her enormously. Denise passed away in 2006.

Denise's husband Eddie and daughter Nicola have served on the ILFA committee since 2007. Denise's immediate and extended family have continuously fundraised for ILFA and all are honoured and humbled to have this special award dedicated to her memory.

Let's get behind our lung fibrosis healthcare heroes and celebrate their great work!

Please send your entries to ILFA, PO Box 10456, Blackrock, Co Dublin or email info@ilfa.ie. The closing date for entries is the end of May, 2019.

Click here to download the nomination form.

 

ILFA Bursaries for Respiratory Nurses and Allied Healthcare Professionals

ILFA is pleased to announce that six bursaries (each worth €500) will be made available to respiratory nurses and allied healthcare professionals in Ireland to attend the Interstitial Lung Disease Inter-Disciplinary Network (ILD-INN) conference in Birmingham, England on 14th and 15th October 2019.

For more information on the conference please visit www.ild-inn.org.uk

What will the bursary cover?

The bursaries will contribute towards the cost of the conference registration including one night’s accommodation and dinner, and travel to and from the United Kingdom.

How to apply for an ILFA bursary?

Respiratory Nurses and Allied healthcare professionals working in respiratory medicine can apply for a bursary by completing the application form and returning it to info@ilfa.ie by 30th May. Please call Gemma on 086 871 5264 if you have any queries.

The winners will be announced by mid-July and the successful applicants will be notified shortly thereafter. The winners are responsible for organising their own travel and registering with the ILD-INN conference.

Click here to download the application form.

 

Spring Newsletter   

Click here to read the latest newsletter from the Irish Lung Fibrosis Association.

If you would like to join our mailing list and receive the ILFA newsletters by post, please call ILFA on 086 871 5264 or register online here.

 

 

 

 


 

Cork City Marathon Team Relay Event - ILFA needs YOU!

Would you like to take part in the Cork City Marathon ILFA Team Relay event?

Teams of 2-5 people can run or walk the 42km distance on Sunday 2nd June, 2019. 

ILFA Ireland has a number of teams signing up to help raise awareness of lung fibrosis and fundraise for a worthy cause.

The good news is that everyone will receive a medal and gets to experience the 'marathon buzz' as part of Team ILFA.

Our enthusiastic and motivated group includes patients, carers, family members, healthcare professionals and industry representatives who are all running to make a difference.

Contact ILFA on 086 871 5264 or email info@ilfa.ie for more information. 

Donate online via https://cork-city-marathon-2019.everydayhero.com/…/ILFATeam…

 

 

 

Patient Information Day on Palliative Care and Planning for the Future

The Irish Lung Fibrosis Association will host an information day on Palliative Care and Planning for the Future for Lung Fibrosis.

Date: Saturday 6th April 2019

Venue: Hilton Airport Hotel, Northern Cross, Malahide Road, Dublin.

Time: 10am-1pm

Topics will include symptom management, practical support, end-of-life preferences, psychological support, acute exacerbations, lung transplantation and legal advice for patients with lung fibrosis. Speakers will include healthcare professionals working in respiratory medicine, palliative care and the Irish Hospice Foundation.

All are welcome to this free event.

To register, please call 086 871 5264 or email info@ilfa.ie 

 

'The irony of lung fibrosis: a fibroblast to treat IPF'

Professor Luis Ortiz, a leading clinician scientist at University of Pittsburg Medical Centre, will deliver a free educational lecture entitled 'The irony of lung fibrosis: a fibroblast to treat IPF' on Wednesday 13th March at 7pm. To register please call ILFA on 086 871 5264 or email info@ilfa.ie.

The Royal College of Physicians of Ireland and the Nursing and Midwifery Board of Ireland have approved one CPD and one CME point respectively for this free educational lecture. 

Prof Ortiz's work focuses on mechanisms of lung injury that lead to the development of lung fibrosis. He has been a pioneer of the use of using a type of stem cell (the mesenchymal stem cell) as a potential cell therapy for lung diseases. His recent work explores how these cells function and the molecular and cellular mechanisms that appear to block damaging inflammatory processes. 

 

 

What's your new year's resolution?   

Why not try to incorporate more physical activity and exercise into your daily routine in 2019?

Why not try ILFA's 2000 Steps a Day exercise challenge and the ILFA Exercise DVD to help you reach your exercise and activity goals?

These tailored and patient focussed resources are available free of charge to lung fibrosis patients and all healthcare professionals caring for lung fibrosis patients.


Contact ILFA on 086 871 5264 or email info@ilfa.ie to request your exercise materials.

 

 

2018 ... A year in review

Every year seems to get busier and without doubt 2018 was no exception. It was another whirlwind year that kicked off with many brave swimmers taking to the Irish Sea for the annual ILFA swim on 1st January 2018 and as fate (and the coastal tides!) would have it, our last fundraising event of the year was another swim in Sandymount, Dublin on 27th December 2018.  

Now as we welcome 2019 and are busy preparing for an exciting and eventful year head, it’s a perfect time to reflect on some of the best moments from 2018 and highlight all that we’ve accomplished together.

Firstly, we must extend our warmest thanks to everyone who supported ILFA in 2018, particularly our amazing fundraisers and volunteers for their wonderful enthusiasm, creativity and hard work. What incredible individuals! It is thanks to the exceptional support, generosity and goodwill of all our fundraisers, event organisers and corporate donors that we can continue our work supporting patients and families living with pulmonary fibrosis.

Some of the outstanding fundraising events in 2018 included the annual ILFA Swim, the women’s mini-marathons in Dublin and Cork .. 

Click here to read more.

  

 

Winter Newsletter

Click here to read the latest newsletter from the Irish Lung Fibrosis Association.

If you would like to join our mailing list and receive the ILFA newsletters by post, please call ILFA on 086 871 5264 or register online here.

 

 

Annual ILFA Christmas Swim

The ILFA Christmas Swim will take place on Thursday 27th December at 1pm sharp at Sandycove pier, Co Dublin. This year's swim is dedicated to the memory of Honóra Ní Chríogáin, co-founder of ILFA and organiser of the swim since 2002.

Refreshments will be served at Fitzgerald's Pub afterwards at 1.30pm.

Please contact ILFA on 086 871 5264 (or email info@ilfa.ie) if you would like to take part and fundraise for ILFA. 

 

 

ILFA Christmas cards are now available

Please consider buying some Christmas cards from the Irish Lung Fibrosis Association to help raise awareness of Lung Fibrosis this festive season. 

Each pack has 10 cards - 2 cards each of 5 designs.

One pack costs €6 and two packs cost €10. 

Cards can be ordered by calling 086 871 5264 or emailing info@ilfa.ie

 

 

New support group in Ennis, Clare

On 7th November, 2018, Carmel McInerney (respiratory nurse specialist at Ennis Hospital) and members of the respiratory teams at Ennis Hospital and Limerick University Hospital held a valuable information evening on Pulmonary Fibrosis for patients and family members.

The aim of the meeting was to see if there was interest in setting up a local support group for patients in county Clare.

As a result, ILFA Ireland is pleased to announce the establishment of the Clare Pulmonary Fibrosis Support Group.

Please contact Michael on 087 637 4068 if you are interested in attending the new support group in Ennis.

 

'ILFA 15' receives a Commendation Award at the Irish Healthcare Awards 2018

The Irish Lung Fibrosis Association received a Commendation Award at the 2018 Irish Healthcare Awards on October 17th 2018 for our 'ILFA 15' special edition magazine. ILFA 15 was produced to celebrate ILFA's 15th anniversary in 2017 and features articles written by patients, family members, fundraisers, healthcare professionals and supporters describing their involvement with ILFA and the advances in lung fibrosis care since 2002.

The Patient Organisation Project of the Year award recognises improvements in patient care, innovation and collaboration and we are thrilled that  'ILFA 15' was short-listed in this prestigious and competitive category.

Pictured are Edna Powell (lung transplant recipient), Nicola Cassidy (ILFA), Gemma O'Dowd (ILFA) and Michael Geoghegan (lung transplant recipient) who represented ILFA at the event.

 

'ILFA 15' Special Edition Magazine

In 2017, ILFA celebrated our 15th anniversary.

The production of the 'ILFA 15' magazine was a major project for 2017 and celebrates the advances in IPF care since 2002, when ILFA Ireland was founded. The magazine has articles written by patients, doctors, nurses, allied healthcare professionals, clergy, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, family members, fundraisers and support group members.

The end result is superb and a credit to all the writers involved. ILFA 15 was offically launched during IPF World Week in 2017. 

Cllick here to read the online version of the ILFA 15 magazine.

 

 

ILFA representatives visit Our Lady of Lourdes Hospital, Drogheda

Sarah Nolan, respiratory physiotherapist at Our Lady of Lourdes Hospital in Drogheda, kindly invited ILFA representatives to attend the respiratory team's multi-disciplinary meeting on Tuesday 30th October, 2018.

Nicola Cassidy (ILFA Director) gave an overview of ILFA's work to promote awareness of pulmonary fibrosis and support patients and families, and Matt Cullen (IPF patient and Dublin Support group leader) shared his personal perspectives on living well with the condition.


Nicola (2nd left) and Matt (3rd right) are pictured with Sarah (centre) and members of the medical team. 

 

 

Irish Thoracic Society Position Statement on the Management of Idiopathic Pulmonary Fibrosis

Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched on 31st August 2018 at the Royal College of Physicians of Ireland. 

The ITS Position Statement;

  • provides guidance to healthcare professionals on the optimal pathways for the diagnosis and management for IPF
  • is aimed at policy and decision makers in the Health Service Executive (HSE) and outlines the resources necessary to provide fair and equal access to standards of care needed for all IPF patients
  • will empower patients and families to look for the best care
Pictured at the launch of the ITS Position Statement are Professor Ross Morgan (President of the ITS), Catherine Byrne, TD, Minister of State and Professor Anthony O’Regan.

 

 

Patient Information Day

The next ILFA Patient Information Day will take place on Saturday 20th October at the Crowne Plaza Hotel, Northwood, Santry, Dublin from 10am until 1pm. We hope you can join us to learn more about pulmonary fibrosis from experts in the field. All are welcome.

Our speakers will include;

  • Professor Jim Egan, Respiratory Consultant at the Mater Hospital

  • Dr Eoin Hunt, Respiratory Registrar at the Mater Hospital

  • Grainne Casey, Respiratory Physiotherapist at the Mater Hospital

  • Zita Lawlor, Transplant Co-ordinator at the Mater Hospital

  • Lindsay Brown, Respiratory Nurse Specialist at St. Vincent's Hospital

    Please note that some of the speakers are different to that advertised in ILFA's Autumn Newsletter due to unforeseen circumstances. We are grateful to the new speakers for agreeing to take part at short notice.

Please contact Gemma on 086 871 5264 or email info@ilfa.ie to register to attend this free event.

 

ILFA Ecumenical Service of Prayer and Reflection   

The annual ILFA Service of Prayer and Reflection will take place on Saturday 6th October at Brighton Road, Methodist Church, Rathgar, Dublin at 3pm. On street parking is available on Brighton Road. There is limited parking at the church for patients with mobility challenges. 

The ecumenical service will be celebrated by Reverend Vanessa Wyse Jackson (Minister at Rathgar Methodist Church), the Reverend Canon Brian McKay (Prior of Terenure College), and the Reverend Canon Charles Mullen (Dean's Vicar at St Patrick's Cathedral).

All are welcome to attend this special service.

 

 

Raising Awareness of Lung Fibrosis

A great article entitled "Living with lung fibrosis; therapies and hoping for a transplant" appeared in print and online in the Irish Times on Tuesday 9th October.

Well done to Edna Powell and Evelyn Cooper for sharing their stories of lung fibrosis and mentioning the support from the Irish Lung Fibrosis Association. 

Click here to read the article

 

Press Release from the Irish Donor Network

As TDs Return from the Summer Recess, Irish Donor Network Calls for Swift Passing of Legislation for Soft Opt-out Organ Donation

Date of issue: Monday September 17, 2018
As TDs get set to return from the summer recess, and RTE airs a documentary on Orla Tinsley’s transplant, the Irish Donor Network has today renewed its call on Government for the introduction of presumed consent organ donation legislation – also known as soft opt-out organ donation – to improve transplant rates in Ireland.

The call comes against a backdrop of most recent figures showing 587 people waiting for potentially life-changing organ transplants in Ireland in 2017. Ireland lies in 15th place out of 28 European Union countries when it comes to organ donation, despite very high levels of public support.

International evidence has confirmed the positive impact of opt-out consent on deceased organ donor rates. Over a three-year period, after making the change to an opt-out system, Belgium saw its rate of organ donation increase by 100 per cent. The recent experience in Wales with soft opt-out has also been very positive. The countries with the best rates of organ donation in Europe have some form of soft opt-out system, combined with sufficient infrastructure.

Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chair of the Irish Donor Network comments:
“The resumption of Dáil Éireann this Tuesday coincides with the broadcasting by RTÉ of a documentary on inspirational cystic fibrosis campaigner, Orla Tinsley, who underwent a double lung transplant in December of last year. The documentary once again brings into sharp focus the importance of organ transplantation and the transformation it makes to people’s lives.

“Introducing a soft opt-out organ donor consent system will undoubtedly save more lives and help to ensure our organ donor system is fit for the 21st century.

“Ireland is one of the last countries in Europe, along with Scotland, Northern Ireland and England, not to have presumed consent when it comes to organ donation. The number of people awaiting life-saving organ transplants in Ireland is more than double the operations carried out.

“Bringing in this new legislation will also bridge the gap between people’s intentions and their behaviour. 85 per cent of people in Ireland are willing to donate organs but only one-third of us carry an organ donor card and many of us do not inform our next of kin of our intentions to donate or otherwise.  

“Organ donation will always be a ‘gift of life’. With this proposed new system, next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one should they not wish to do so. There will also be an online register for opting out of organ donation.

“IDN is today calling on public representatives of all persuasions to get behind this legislation and to ensure its swift passage through the Houses of the Oireachtas. It will prove an enduring legacy and one that will offer the prospect of a new lease of life for more of this country’s citizens than ever before.”

ENDS

For more information, Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chairperson Irish Donor Network, telephone.: 01 4962433 / 087 6370557 or email pwatt@cfireland.ie

Notes to Editor.

About the Irish Donor Network (IDN)

The IDN represents the following patient groups

  • Alpha One (Antitrypsin) Foundation: The Alpha One Foundation was founded in 2001 to raise awareness, increase diagnosis, promote research and improve the treatment of Antitrypsin Deficiency (Alpha-1). www.alpha1.ie
  • Cystic Fibrosis Ireland (CFI): CFI was founded in 1963 to support people and families living with Cystic Fibrosis (CF). Many people with CF will need a double lung transplant because of the damage caused to lungs by CF. www.cfiireland.ie
  • Chronic Obstructive Pulmonary Disease Support Ireland (COPDSI): COPDSI provides support for people with COPD in Ireland. www.copd.ie
  • Cystinosis Ireland: Cystinosis is a rare, degenerative, inherited disease which frequently requires the need for kidney and sometimes other organ transplants. www.cystinosis.ie
  • The Irish Heart and Lung Transplant Association (IHLTA): The IHLTA is a voluntary organisation which includes heart, lung(s), heart and lung transplant recipients, family and supporters. www.ihlta.com
  • The Irish Lung Fibrosis Association (ILFA): The ILFA was set up in 2002 to support patients and families living with Idiopathic pulmonary fibrosis (IPF). www.ilfa.ie
  • The Pulmonary Hypertension Association Ireland: PHA Ireland was established in 2005 to raise the profile of Pulmonary Hypertension (PH) and to support patients who are diagnosed and living with this disease in Ireland. Persons with PH may require lifesaving lung and liver transplants.

 

 

The ILFA Autumn 2018 Newsletter is now available online


Click here to read the latest ILFA newsletter. 

 

If you would like to join our mailing list and receive the ILFA newsletters by post, please call ILFA on 086 871 5264 or register online here.

 

 

 

Irish Thoracic Society Position Statement on the Management of Idiopathic Pulmonary Fibrosis


Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched on 31st August 2018 at the Royal College of Physicians of Ireland. 

The ITS Position Statement;

  • provides guidance to healthcare professionals on the optimal pathways for the diagnosis and management for IPF
  • is aimed at policy and decision makers in the Health Service Executive (HSE) and outlines the resources necessary to provide fair and equal access to standards of care needed for all IPF patients
  • will empower patients and families to look for the best care

The ITS has called for;

1)    adequate resourcing of the centres of expertise in lung fibrosis across Ireland to ensure all patients receive an early and accurate diagnosis with treatment started within 16-weeks, and the same high standards of care

2)    a specific HSE National Clinical Programme to facilitate a standard pathway of care to ensure IPF receives the critical focus it requires at all levels across the health service.

The development of the ITS Position Statement was a major collaborative effort facilitated by the ITS and involving a wide range of disciplines including; doctors, surgeons, pathologists, radiologists, nurses, physiotherapists and patient representatives. Nicola Cassidy, Director of the Irish Lung Fibrosis Association, and Matt Cullen, patient advocate and leader of the Dublin Pulmonary Fibrosis Support Group, were involved in the project.

Pleae click here to read the Press Release on the ITS Position Statement. 

 

Educational Video for General Practitioners

In 2017, the Irish Lung Fibrosis Association (ILFA) funded an educational video on Idiopathic Pulmonary Fibrosis (IPF) for General Practitioners. IPF is classified as a rare disease and can be difficult to diagnose. The video aims to raise awareness of the condition among primary care doctors.
The video is hosted on the GP website; www.gpbuddy.ie.
ILFA is grateful to Dr Emmet McGrath, Respiratory Consultant at St Vincent's University Hospital, Dublin for filming the video tutorial.

 

The 2018 Fergus Goodbody Memorial Lecture

ILFA was set up in memory of Fergus Goodbody in 2002 to facilitate research, education and support for Idiopathic Pulmonary Fibrosis (IPF). Every two years since 2010, ILFA has invited an international leader in IPF to deliver an educational lecture to healthcare professionals in Ireland. The 2018 Fergus Goodbody Memorial Lecture on IPF took place on 14th March in collaboration with the Royal College of Physicians of Ireland (RCPI). 170 healthcare professionals registered to attend, making this our largest educational event to date. Dr Diarmuid O'Shea, Registrar of the RCPI, welcomed the speakers and audience to the Masterclass in Respiratory Medicine and was especially delighted to welcome Nicky Goodbody to the event.

Professor Toby Maher from the Royal Brompton Hospital, London spoke on 'Developments in IPF' and Anne Marie Russell, Clinical Doctoral Research Fellow at the National Heart and Lung Institute at Imperial College London spoke on 'Palliative care and end of life management for IPF patients.’  Professor Edward McKone, St Vincent's University Hospital, spoke about Cystic Fibrosis, and Professor Anthony O'Regan, University College Hospital Galway, gave a lecture entitled 'Alphabet soup' and summarised different types of Interstitial Lung Disease.

Please click here to read more. 

Professor Maher's presentation can be viewed here. 

   

 

Anne-Marie Russell's presentation can be viewed here. 

 

Professor O'Regan's presentation can be viewed here.

    

 

Educational Bursaries for Respiratory Nurses and Allied Healthcare Professionals to attend the ILD-INN conference

ILFA is delighted to announce that due to the high calibre of applications received, we have decided to award 10 educational bursaries to healthcare professionals to attend the Interstitial Lung Disease Inter-disciplinary Network (ILD-INN) conference in Birmingham on 7th and 8th of October. 

 
The recipients of the ILFA bursaries are;
  • Patricia Davis (Community Healthcare Organisation Area 6)
  • Lisa Glynn (Tallaght University Hospital)
  • Elaine Craven (Connolly Hospital, Blanchardstown)
  • Carol Doherty (Letterkenny University Hospital)
  • Breige Leonard (South West Acute Hospital Hospital, Enniskillen)
  • Deirdre O'Flaherty (Beaumont Hospital)
  • Elaine Cribbin (Tallaght University Hospital)
  • Irene Byrne (Mater University Hospital)
  • Carita Bramhill (St Vincent's University Hospital)
  • Grainne Coffey (University Hospital Kerry). 
Well done to all the recipients - we hope you will enjoy the conference! 
 
For more information on the conference please visit www.ild-inn.org.uk
 
 

ILFA Exercise DVD

The ILFA Exercise DVD for lung fibrosis patients is available to order now. Contact ILFA on 086 871 5264 or email info@ilfa.ie

 

 

 

General Data Protection Regulations (GDPR) and ILFA

Recently ILFA contacted everyone on our mailing list to request consent for your personal details (name, address, email, telephone number) to remain on the ILFA mailing list. This is necessary to comply with the new General Data Protection Regulations (GDPR).
 
Thank you to everyone who has responded so far. If you have not replied yet but wish to remain on our mailing list please;
  • Register on-line at https://www.ilfa.ie/register.asp  or 
  • Call Gemma on 086 871 5264
If we have not received your consent by Friday 20th July, your details will be removed from the ILFA database