Organ Donation

Organ Donation


  • Happy 26th (Transplant) Anniversary to Brendan McLoughlin from Ballybofey, County Donegal. The longest living CF lung transplant recipient in Ireland.

    Brendan Mcloughlin (PWCF) celebrates the 26th anniversary of his lung transplant on the 11th of August 2018. Brendan is currently in the very good care of the Mater Hospital in Dublin. He was originally transplanted in Newcastle, England on the 11th of August, 1992.

    Brendan was given a single lung transplant in 1992, which is still quite unusual for patients with CF. Brendan recalls ‘they took two lungs out and put one back!’. He remembers ‘before the operation I was gasping, struggling for health.. I couldn’t lie flat- there had to be six pillows supporting me. Afterwards everything had completely changed. It was like a new life’ 

    The transplant was very successful and until the last year or so, Brendan was living independently. 

    Brendan also needed a kidney transplant which was successfully performed in Dublin in 2002. Brendan is one of the longest surviving lung transplant recipients in the world. The world record for a single lung transplant is held by an Irish great grandmother, Vera Dwyer who has a different condition (Fibrosing alveolitis) and was transplanted in the UK in 1988. In 2017, Vera was verified by the Guinness book of records as the the longest living single lung transplant recipient in the world (29 years).

    Brendan has long campaigned for the rights of people with disabilities and in recognition of his work, earlier this year Philip Watt, CEO of CFI presented Brendan with a copy of an Irish Time article from 1992 that featured his lung transplant.

    On behalf of all of us in CFI, we wish our friend Brendan happy anniversary!

  •  

    British Medial Journal supports an opt out approach to organ donation in the UK

    CFI strongly supports the change to a soft opt out system of organ donation in Ireland. The following is a recent opinion piece in the widely respected British Medical Journal (BMJ) supporting a similar change to a soft opt-out organ consent system for the whole of the UK. This article draws on recent research to support such a change. 

    John Chisholm: An opt-out system has the potential to increase donation rates and save lives

    April 12, 2019

    Organ donation saves lives. People die unnecessarily while on the waiting list for the organs they need in order to preserve and enhance their lives and health. There are benefits to individuals, their families, society, the National Health Service and the wider economy in promoting transplantation. That is why the British Medical Association (BMA) is committed to encouraging transplantation and to increasing the numbers of donors and of lives saved, because on average three people a day in the UK are dying waiting for an organ.

    The BMA strongly supports the introduction of a “soft” opt-out system for organ donation, an opt-out system with safeguards, for which we have been campaigning since 1999. [1,2] The family would still be consulted, but dead donors’ consent would be presumed unless there is evidence that they did not wish to donate. In Wales, such a system has now been in place since December 2015. [3] In England, the Organ Donation (Deemed Consent) Bill has passed through Parliament, with implementation due to start in April 2020. In Scotland, a Bill is currently being debated.

    There have been huge advances in organ donation over the past 20 years and everyone who has contributed to this needs to be congratulated. The BMA believes that, as one part of a broader strategy, including improvements in organ donation and transplantation infrastructure, resourcing and organisation, a shift to an opt-out system will have a positive impact on donation rates. It is, of course, difficult to extrapolate from the experiences of other countries, but comparative analyses have found that an opt-out system is one of a number of factors that are positively associated with higher donation rates.

    Independent research evidence by the University of York, which undertook a systematic review of the published data, showed a positive association between opt-out legislation or practice and higher rates of donation. [4] Four methodologically sound studies comparing donation rates in countries with and without opt-out found that opt-out law or practice was associated with increased donation rates; in three of the studies the increases were statistically significant.  Five methodologically sound studies comparing donation rates in a single country before and after the introduction of an opt-out law all found a consistent increase in organ donation rates following the introduction of legislation. More recent evidence reviews, for the Welsh and Scottish Governments, have reached similar conclusions. [5,6]

    Studies repeatedly show that most people—80 per cent or more—support organ donation but only about 38 per cent of the UK population have registered their wish to donate on the organ donor register. [7] Many people mean to do so but, in their busy lives, just never get around to doing so.  An opt-out system will help to overcome this problem and make it easier for those who are willing to donate—but never get around to signing up to the register—to have their wishes respected.

    The BMA also supports the principle behind an opt-out system—that if people don’t object to their organs being used after death, they should be used to save lives. Under an opt-out system, individuals have the same choice as in an opt-in system—to donate or not to donate—so individual autonomy and choice are protected and respected under this system.  It is simply the way people’s views are expressed that would change. All organ donation is a gift and should be recognised as such, irrespective of the model of consent in place. Families are often comforted by knowing something good has come from their loss.

    Our expectation is that, under an opt-out system, organ donation would become the default position which, over time, changes cultural expectations in society and becomes the societal norm.  Thus, there would be a shift to a more positive view of organ donation, so that donation becomes seen as the natural and expected thing to do—a change we would welcome.

    We know there is already considerable public support for opt-out.  A poll the BMA commissioned in 2017 in England, Scotland and Northern Ireland found that 65 per cent of those questioned supported such a shift. [8]

    However, advance and continuing publicity about the change is crucial. There should be a well-resourced, high-profile, consistent and persistent publicity campaign to enable a more informed public debate and to encourage people to make their wishes about donation known. The success of an opt-out system relies upon people knowing about their options and being able, easily and quickly, to opt out if that is their wish. This is not about forcing people into donation. It is about making it as easy as possible for an individual’s willingness to donate organs after their death to be acted upon. Additionally, publicity will increase awareness about transplantation and its benefits, increase the understanding and social acceptability of organ donation, and promote discussion within families and between friends, so that there is greater awareness of individuals’ wishes. The key determinative issue should be what the deceased person wanted in relation to donation.  The family’s role should be to provide information to contribute to the decision, rather than to give consent themselves.

    The early evidence from Wales is encouraging. Only six per cent of the population has opted out of donation—about the number expected, based on surveys of the public’s view of organ donation.  The number of deceased donors has increased. [9] There has been a statistically significant increase in the consent rate among brain-dead donors, when comparing Wales with England. [10] Wales now leads the other countries of the UK in terms of donors per million population—at 25.4 donors per million population. [11] Knowledge about and support for the soft opt-out system is high amongst both the public and health professionals. A significant finding from the qualitative research with those approaching families in Wales is that more families are aware of the views of the deceased individual. [12,13] This is a very positive effect of the publicity surrounding the introduction of opt-out. It is known that the approach to and discussions with families are easier if the family is aware of the individual’s wishes.  

    Hopefully, similar benefits will be seen in England, and in Scotland once legislation is approved.  Publicity, education, attitudinal changes, trained specialist staff, investment in infrastructure improvements, and legislative change to an opt-out system all have the potential to increase donation rates and save lives. 

    See alsoIs an opt-out system likely to increase organ donation?

    John ChisholmChair, Medical Ethics Committee, British Medical Association. Twitter: @DrJohnChisholm
     
    Competing interests: My work for the BMA is remunerated by the payment of daily honoraria for attendance at meetings.
     

    References:

    1 British Medical Association.  Organ donation in the 21st Century: Time for a consolidated approach.  London: British Medical Association, 2000

    2 British Medical Association.  Building on Progress: Where next for organ donation in the UK?  London: British Medical Association, 2012.

    3 Human Transplantation (Wales) Act 2013.  Cardiff: Stationery Office Limited, 2013 https://www.legislation.gov.uk/anaw/2013/5/pdfs/anaw_20130005_en.pdf  

    4 Organ Donation Taskforce.  The potential impact of an opt out system for organ donation in the UK.  A report from the Organ Donation Taskforce. Supporting information: Annex A.  London: Department of Health, 2008.

    5 Palmer M.  Opt-out systems of organ donation: international evidence review.  Cardiff: Welsh Government Social Research, 2012. https://gov.wales/docs/caecd/research/121203optoutorgandonationen.pdf

    6 Niven J, Chalmers N.  Opt out organ donation: A rapid evidence review.  Edinburgh: Scottish Government, 2018. https://www.gov.scot/publications/opt-out-organ-donation-rapid-evidence-review/

    7 NHS Blood and Transplant.  Organ Donation and Transplantation Activity Report 2017/18.  Bristol: NHS Blood and Transplant. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/12065/transplant-activity-report-2017-2018.pdf

    8 British Medical Association.  Press release: Two thirds of people support a ‘soft’ opt-out organ donation system, reveals new BMA survey.  London: British Medical Association, 2017. https://www.bma.org.uk/news/media-centre/press-releases/2017/february/two-thirds-of-people-support-an-optout-organ-donation-system

    9 NHS Blood and Transplant.  Organ donation and transplantation activity data: Wales.  Annual data for financial years 2014/15 to 2017/18 and data for 2018/19 – first three quarters.  January 2019. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/15240/nhsbt-wales-summary-report-jan-19.pdf

    10 NHS Blood and Transplant, National Organ Donation Committee.  Analysis of the effect of Welsh legislation on consent/authorisation rates: quarter 12.  January 2019. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/15404/quarterly-monitoring-of-welsh-legislation-jan19.pdf

    11 NHS Blood and Transplant.  Organ Donation and Transplantation Activity Report 2017/18.  Bristol: NHS Blood and Transplant. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/12065/transplant-activity-report-2017-2018.pdf

    12 Welsh Government.  Update to Survey of Public Attitudes to Organ Donation: Key figures from Wave 15.  Cardiff: Welsh Government, September 2018. https://gov.wales/docs/caecd/research/2018/180906-survey-public-attitudes-organ-donation-waves-15-en.pdf

    13 Young V, McHugh S, Glendinning R, Carr-Hill R.  Evaluation of the Human Transplantation (Wales) Act: Impact Evaluation Report.  Cardiff: Welsh Government, 2017. https://gov.wales/docs/caecd/research/2017/171130-evaluation-human-transplantation-wales-act-impact-en.pdf

     

  • Statement from Cystic Fibrosis Ireland on the sad passing of former Senator Feargal Quinn

    Cystic Fibrosis Ireland today mourns the death of former Senator Feargal Quinn, who was the first champion of the proposed new form of organ donor consent in Ireland.

    Philip Watt, Chief Executive, Cystic Fibrosis Ireland, stated:

    “Cystic Fibrosis Ireland is very saddened to learn of the death of former Senator Feargal Quinn who was a tireless campaigner for improved organ donation, including what is now called ‘soft opt-out’ organ donor consent*.

    The former Senator introduced the Human Body Organs & Human Tissue Bill 2008 as a Private Members Bill, and was the initial impetus behind the current moves to introduce soft opt-out organ donation legislation which is shortly to come before Government for approval.

    His objective in championing the cause of organ donation was to save lives and the new legislation will undoubtedly form a key part of the extensive legacy that he leaves behind.

    It would be entirely fitting that the former Senator’s contribution to the forthcoming soft opt-out legislation should be acknowledged in some way when the Human Tissue Bill commences its legislative journey."

    On behalf of the cystic fibrosis community in Ireland, Cystic Fibrosis Ireland wishes to record its deep appreciation of the former Senator’s contribution to advancing the cause of organ donation, and to extend its deepest sympathy to Feargal’s wife Denise, his children, relatives and wide circle of friends.

    Ar dheis Dé go raibh a anam uasal.

    ENDS

    * Soft opt-out is so-called as it is where consent is presumed by default, unless a person opts out or a family does not wish to proceed

     

  • CFI Update March 2019

    Cystic Fibrosis Ireland are delighted to inform members of several positive updates which have taken place over the past number of weeks. Watch the video to hear more about what has been happening in Cystic Fibrosis Ireland.

     

     

     

  • Double Lung Transplant for CF Advocate Orla Tinsley

    Cystic Fibrosis Ireland sends our love and best wishes to the wonderful CF Advocate Orla Tinsley who we understand has been called for a double lung transplant in New York Presbyterian Hospital. 

    After several months on the transplant list and six calls, hopefully this will prove 'lucky number seven' for Orla.

    On behalf of CFI and the CF Community in Ireland we wish Orla success with her transplant, our thoughts are with her and her family at this time.

    Philip Watt
    CEO
    Cystic Fibrosis Ireland 

     

  •  

    Good news on Organ Donor Consent 

    21 January 2019

    The Irish Government has indicated its intention to bring forward to the Cabinet 'soft opt out' organ donor consent next month (February 2019) as part of the Human Tissue Bill.

    This is strongly welcomed by Cystic Fibrosis Ireland, which is part of 7 patient groups in the Irish Donor Network (IDN) that supports the change in donor consent from opt in to soft opt out. We believe this change will result in more solid organs for transplantation (heart, lung, kidney, pancreas and liver).

    Under the proposed change, it will be presumed that most people in Ireland want to donate their organs (this is supported by opinion polls) and there will be an online Register for those that want to opt out.

    Next-of-Kin will still be consulted under the new system. This why it is called ’soft’ opt out.

    A hard opt out is where Next-of-Kin are not consulted. Understandably the ‘hard’ opt out system is not proposed for Ireland for ethical and practical purposes.

    Cystic Fibrosis Ireland urge our members to make their views known during this debate, especially those families that have benefited from a double lung transplant. 

     

    For further updates, visit the website of the Irish Donor Network (IDN) http://donornetwork.ie

    See the letter from CFI/IDN published in the Irish Times https://www.irishtimes.com/opinion/letters/organ-donation-and-transplants-1.3764244 or

     

     

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    Organ Donor Awareness Week 2019

    Why you need to have the conversation about organ donation with your family

    If you missed it, you have a second chance to see the wonderful interview with Shane Halligan and CFI Charity ambassador Joe Brolly  on the Ray Darcy Programme (Saturday 30 March). Highly Recommended. People with CF will often need a double lung transplant to lengthen  and improve the quality of their lives. 

    Cystic Fibrosis Ireland (CFI) supports organ donation and transplants by:

    • Providing grants towards the support costs to people with CF associated with transplants
    • We fund a post transplant senior nurse in the Mater Hospital
    • We fund a part time psychologist in the Mater Hospital and a data entry clerk
    • We chair and are members of the Irish Donor Network (IDN)
    • We raise awareness and campaign for soft opt out organ donation 

    Watch the full interview with Shane and Joe on the Ray Darcy Show by clicking here.

    #65RosesDay is on Friday April 12th. You can support Cystic Fibrosis Ireland by purchasing a purple rose for €2 or donating online.

     

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    Very moving BBC item on ‘soft opt out’ organ donation consent – Please watch this

    https://www.bbc.com/news/health-47359682

    Cystic Fibrosis Ireland (CFI) which is part of the 7 patient groups in the Irish Donor Network (IDN), notes that in England ‘soft opt out organ donor consent’ has been fast-tracked by Prime Minister Theresa May and has passed its last hurdle in the UK Parliament.

    Currently England has an ‘opt in’ scheme with shares much in common with the present system in Ireland. One of the factors that has contributed to fast tracking of the new form of organ donor consent in England and more recently in Scotland has been the success of soft opt out in Wales.

    Meanwhile, Minister for Health,  Simon Harris TD has recently restated the promise in the Programme for Government to introduce soft opt out donor consent into Ireland. This is very much welcomed by CFI and IDN. Philip Watt, CEO of CFI stated

    ‘We very much hope that the introduction of soft opt out donor consent in Ireland is also fast-tracked and that adequate resources are provided to support this change.’

     

    Max and Kiera’s Law  
    The law to change organ donor consent in England is to be named after Keira Ball from County Devon in SW England who was killed in a road accident when she was just 9 years of age. Her donated organs helped save the lives of Max (11 years old) and 3 others (see the video in the BBC report). 

     

     

  • Transplantation & Organ Donation

    Lung Transplantation

    Transplants are a crucial part of the range of recognised interventions needed to manage Cystic Fibrosis (CF). Like any other major surgery, transplants carry considerable risks and a transplant is appropriate only for a patient who is severely ill and has tried all other forms of conventional treatment. To these patients, lung transplantation can offer both a chance of an extended life and a significantly better quality of life.

    Double lung transplants for adult patients in Ireland are carried out in Dublin (Mater Misericordiae University Hospital) and in Newcastle, England (Freeman Hospital). The quality of the surgery and care before and after surgery in both centres is very high which is reflected in success rates. There are separate waiting lists for both hospitals. Pre and post-transplant support for all transplant patients is undertaken in the Mater Hospital irrespective of where the surgery is carried out. Lung transplantation is rarely proposed for children because of the range of options of other treatments that are now available, but this surgery is not carried out in Ireland and children with CF who need a transplant are referred to a UK transplant centre. 

    Recent Progress in the Irish lung transplant Programme

    The appointment in October 2011 of the first dedicated lung transplant surgeon in Ireland to the Mater has been an important development. She joins the already experienced team in the Mater that includes surgeons Mr Lars Nolke and Mr Jim McCarthy and transplant coordinator, Professor Jim Egan. Thanks to support from charities, including CF Ireland and ‘Second Chance’ the Mater is also using Ex Vivo Lung Perfusion which makes more lungs available for transplantation.

    The Mater Hospital Lung Transplant Booklet

    If you are interested in learning more about the Mater Hospital website provides a wide range of background information on all the phases of lung transplantation, including the Pre Transplant; Operation and Post Transplant Phases. Cystic Fibrosis Ireland provided financial support for this website - visit Mater Hospital Website 

    CFI Support for Transplantation and Organ Donation

    CF Ireland provides support for people under going transplant assessment or transplantations.  Please see our Transplant Assessment/Transplant Grant Scheme or contact Sam in CF House on Tel: 01-4962433 or email: This email address is being protected from spambots. You need JavaScript enabled to view it. 

    Carry an Organ Donor Card. Visit the Irish Kidney Association