Our History

A brief history of Cystic Fibrosis Ireland and our main achievements 1963-2019

The Cystic Fibrosis Association of Ireland (CFAI) was established in November 1963 and some 50 years later, in 2013 we shortened our name to Cystic Fibrosis Ireland (CFI).

Despite the discovery of CF in 1938 by the pioneering American doctor, Dorothy Andersen, there was very limited knowledge or awareness about the disease in Ireland in the 1960's. Consequently, there were very few services of supports and parents of children with CF at this time felt alone and abandoned. 

It was Anne O’Dwyer, a mother with twins with CF (Michael and John) who provided the initial spark and momentum to establish CFAI in November 1963. Anne was visiting her doctor and after hearing about all her problems in affording care and accessing medicines, he advised her to set up a patient organisation.

CFAI was set up following a meeting in Crumlin Children’s Hospital in 1963. By a fortuitous coincidence the father of Anne O’Dwyer was Professor Colman Saunders who was one of the first dedicated Paediatricians in Ireland and who also happened to be the first Medical Director of Crumlin Children’s’ Hospital. Anne was soon joined by others including Bridie Maguire who became the first CEO of CFAI and who dedicated most of her adult working life to the cause of CF.

Very quickly both Anne and Bridie and the CFAI branches that were beginning to form all around Ireland realised that nothing was going to be given to people with CF, they were going to have to campaign.

Examples of these high profile campaigns include:

1963-1970: The Long term Illness Scheme

The campaign to provide affordable CF care including for the cost of expensive ant-biotics was achieved after a long battle that resulted in the Long Term Illness Scheme (LTI) in 1971 by the Minister for Health Erskine Childers TD, although the original concept of such a scheme was the work of Minister Donogh O’Malley TD whose White Paper on the reform of health was published in 1966. It took his successors 5 years to implement O’Malley’s vision.

1963-1969: First dedicated CF outpatient centre established in Dublin

After much campaigning by CFAI and against direct opposition from the Department of Health, who felt they knew better, the first specialised CF outpatient centre was established in Crumlin Children’s Hospital in 1969.

The Irish Times 10 June 1969 reported

‘The Department of Health does not recognise the disease as one which requires a specialist outpatient service distinct from the general medical or surgical clinics and so no funds will forthcoming from the department to pay for the new service’.

CFAI ended up having to part-pay for the staff in the new unit. The opening in the centre in Crumlin quickly resulted in the appointment of the first dedicated CF Consultant in Ireland, Professor Edward Tempany (1930—2010).
 

Our History
The founding members of CFI Bridie Maguire and Anne O'Dwyer
Our History
The opening of the first CF clinic in Crumlin, 1969

 

2002-2012: The Battle for an adequate/ new CF adult unit in St Vincent’s’ Hospital

The need for an adequate/new CF in-patient and out-patient facility was identified in the 1990’s. By the early 2000’s there was a crisis in CF care throughout Ireland. This resulted in the Board of CFAI commissioning the ‘Pollock Report’. Published in 2005, this was in effect an audit of CF care in Ireland undertaken by Dr Ronnie Pollock, a UK based consultant. The Pollock Report did not ‘pull its punches’. With 304 adult patients there were long delays in accessing care because of insufficient out-patient and in- patient facilities. An 8 bed inpatient unit in SVUH was opened as an emergency response to the crisis in 2008. But the Pollock Report Audit identified the need for 34 rooms.

The campaign really took off when a small number of patients with CF, the most prominent being Orla Tinsley, began to speak out in the media. Finally in August 2012 the new unit in the Nutley wing in SVUH opened with a total capacity of 34 CF approved in patient rooms and 20 dedicated rooms in the St Christopher’s ward. The opening of this wonderful new unit was only a start. All other CF centres in Ireland had inadequate facilities and staffing levels. 

2009: Publication of the HSE Services for People with Cystic Fibrosis in Ireland

This report largely endorsed the findings of the 2005 CFAI Pollock Report. Key outcomes were a model of CF care and additional funding for CF Clinical posts.

2011-present: Building of CF Hospital Units around the country

When the severe financial recession in Ireland kicked in around 2010, it became immediately apparent that there would be no public funding available to make improvements to CF hospital centres. So the CFI board and local branches embarked on a massive fund-raising programme to raise the resources ourselves, a task made more challenging by the recession. During this period over 14m Euro was raised for these building developments. The standout achievements included:

2011: 4 bed unit in Crumlin Children’s Hospital

2014: Outpatient facility in Drogheda Hospital for children and young people

2014: CF outpatient unit in Galway for children and young people 

2015: New outpatient unit in Mayo Hospital

2016: 7 bed CF inpatient unit and completely new outpatient unit in Limerick Hospital

2016: 4 bed CF unit for children and young people in Waterford Hospital

2016: 2 bed in patient unit for children and young people in Cavan Hospital

2014-present: Campaigning for new CF adult in-patient unit in Beaumont Hospital

2017-present: Fundraising for adult out-patient unit in Galway hospital

Some of these developments also benefitted other (non CF) patients

 

Our History
Members of the CF Community campaigning for better CF Care
Our History
CFI and CF Hopesource campaigning for CF Facilities in Beaumont Hospital

2011-Present: Supporting CF clinical Posts around the country where there are gaps

Despite the additional funding for clinical posts that followed in the wake of the Pollock Report (2005) and the HSE Services Report (2009) there remains many gaps in the clinical posts linked to the Multi-Disciplinary-Teams (MDT’s). Some of these gaps in staff have been funded by CFI, for example:

2008-2016: Microbiologist in Tallaght Hospital

2016-2018: Senior Registrar in Beaumont Hospital

2016-2019: Specialised Nurse in Mater Hospital

2016-present: Data Entry Clerk Mater Hospital

2016-present: Psychologist in the Mater Hospital

2018-present: Physiotherapist in Sligo Hospital

2018-present: Psychologist in Galway Hospital

2016-present: Advocating for a second CF consultant in Cork Hospital (adult unit)

2016-present: seeking part funding of new children’s hospital in Cork

Some of these developments also benefitted other (non CF) patients

2009-present: Health Research (some highlights)

  • 2016-present: CFI chairs the Medical Research Charities Group and establishes the Irish Health Research Forum
  • CF funded research includes for example:
    • Well-being and mental health
    • Liver disease
    • Transitioning
    • Virtual health
    • CF APPs to help adherence
  • CF and Dental Health
  • Direct research and publication of ground breaking report on ‘Independent Living’ (2018)

2009-Present: Grants paid to CFI members for exercise; social and distress; bereavement; transplant etc.

CFI pays out tens of thousands in grants to our members each year for the above personal grants. In 2018 there was significant increase in the amounts paid under some of these grant headings, for example bereavement, in recognition of dramatic cost of living increases in recent years.   
 

2012: Renewal of the Lung transplant Programme in Ireland

The lung transplant programme in Ireland was established as early as 2007 but did not really take-off until 2012 with the appointment of dedicated lung transplant surgeons and the establishment of the ODTI, the Organ Donation and Transplant Ireland (ODTI). A key remaining challenge is post-transplant CF care.

2012-Present: Campaigns to ensure people with CF in Ireland get access to ground breaking drugs such as Kalydeco (2013), Orkambi (2017) and Smydeco (2019)                                                                                                                                                                                   

These 3 ‘CFTR’ drugs are the first to treat the underlying cause of CF in over 70% of the CF population. Thanks to a deal between Vertex and the HSE in 2017, if there are improvements or extensions to future CFTR drugs produced by Vertex, these will be automatically approved in Ireland following approval by the European Medicines Agency. 

2016: National Clinical Programme for CF

CFI successfully proposed to the DOH/HSE to establish a National Clinical Programme for CF as long ago as 2012. The work of this group only got going in 2016 is still at a formative stage.

2016-present: The proposed introduction of Soft-Opt-Out Organ Donation

CFI chairs and is an active member of the Irish Donor Network (IDN) which has campaigned successfully for soft opt out organ donation and increased resources for all forms of transplantation in Ireland.

2014-present: Ongoing support for other rare diseases

CFI plays a key role in supporting other patient groups with rare diseases including those with Epilepsy that suffered from the side effects of Epilim in Ireland; groups seeking to establish themselves; and we are active members of the Advisory Group for the implementation of the National Plan on Rare diseases 2014-present. CFI chairs the Rare Disease Task Force.

1963-present: CFI remains a self-funded vibrant and independent patient group

This above amounts to significant progress in CF care in recent years, though much more needs to be done. This has been achieved through the key stakeholders in CF working together including CFI (Board, staff and branches); clinicians and their teams (including the CFI Medical Council); our friends and supporters including the many, many people that fundraise for CFI. Throughout the period 1963-present CFI has remained a self-funded, vibrant and independent patient group.

The Cystic Fibrosis Ireland story is told in a book Watt, P (2013) For the Roses. The CF Association of Ireland at 50. 1963-2015 which is available as a PDF on this website under publications. This section provides a brief history.

For the Roses Download