Cystic Fibrosis Ireland and CF Hopesource Call for Government to Fulfil its Programme for Government Promise for New CF Unit
Broken promises on in-patient facilities for people with CF at Beaumont Hospital
Date of issue: Tuesday, November 6, 2018
In May 2016, the Programme for a Partnership Government set out a clear commitment to ‘immediately proceed to the design and planning stage for a dedicated CF unit at Beaumont Hospital in Dublin for inclusion in the 2017 Capital Plan review’.
Later today, Cystic Fibrosis Ireland and local North Dublin charity, CF Hopesource, will address members of the Oireachtas in Leinster House at a meeting hosted by the Deputy Leader of the Seanad, Senator Catherine Noone. Members will hear of the deep upset and frustration felt by the CF community who, two-and-a-half years later, are still waiting for this Government to honour its promise made in 2016.
Beaumont is one of the five nationally-designated adult specialist centres for cystic fibrosis (CF), yet it continues to not meet the required standards in terms of patient care and facilities.
Currently, there are 160 people with CF who attend Beaumont Hospital. With just seven in-patient rooms, this means a ratio of approximately 23 patients for every bed with long delays for those seeking to access inpatient care, and likely to get even worse as winter approaches.
CF Charities Commit to Raising €1m, but Government Needs to Step Up
Philip Watt, Chief Executive, Cystic Fibrosis Ireland comments:
“The Government continues to fail to honour its commitment to deliver or even commence an in-patient unit for people with CF attending the hospital. As patient groups, we receive regular complaints about the difficulty patients have in accessing in-patient rooms thus delaying their care and compromising their health, while the existing seven rooms are barely fit-for-purpose and run-down through over-use. Adult CF patients often require to be admitted to hospital for 2-3 weeks, and longer, for intensive antibiotic and other treatment. The rooms are also sometimes required for those waiting for a transplant and for end-of-life care as many CF patients will receive their palliative care in Beaumont and not in a hospice because of the medical supports that they will need.
“The anticipated cost of this new 20-bed unit is €11 million, and Cystic Fibrosis Ireland and CF Hopesource are announcing today that we are committed to raising €1 million towards the cost of this essential project. This is in addition to the CF Registrar (non-consultant CF doctor) both charities currently fund in Beaumont at a cost of €100,000 annually. We are grateful to be invited by the Deputy Leader of the Seanad, Senator Catherine Noone, to address Oireachtas members today. We will tell them that we are prepared to do our bit, but that we now need the Government to step up to the plate and to adhere to its responsibilities too. The unit should have been finished by now.”
“What is required from Government now is a full statement in writing and publicly announced that they are going to proceed with this new unit, that the funding is in place and a detailed timescale is produced setting out when the building will be commenced and when it will finish.”
Maeve Mullin, one of the co-founders of local North Dublin charity, CF Hopesource, comments:
“CF Hopesource and Cystic Fibrosis Ireland has been working in partnership for over seven years to ensure the development of the new in-patient unit. The 2018 annual report on the implementation of the Programme for a Partnership Government states ‘The development of the Cystic Fibrosis unit at Beaumont is being progressed and funding has been allocated in 2018 for the process to appoint a design team’. We have seen no evidence of any concrete steps that the design and building of this unit is getting underway. It’s bad enough that very ill patients do not have the proper facilities but to raise their hopes and then do nothing is very hard to take for patients and their families. Twenty CF in-patient rooms in Beaumont Hospital will mean that CF patients will receive timely treatment, safe from the risks of cross-infection.”
Dubliner Alice Ward, age 23 years, has CF. A videographer, she is also passionate about the need for appropriate facilities and care at Beaumont Hospital:
“As someone who lives with the reality of cystic fibrosis every day of my life, I do my utmost to keep on the right side of it. I mind myself, do my best to avoid infections, take my medications, and try to keep fit. So, it can be frustrating when I am doing all that I can to beat CF, that the health system isn’t doing all it can to support me. In 2016, I became quite sick and had to attend Beaumont A&E. However, after a number of hours waiting, I went home as it was clear that they could not find a bed for me, and staying in A&E – exposed to a range of potential infections – was just not an option.
“Ten days later, I was admitted clearly much worse than when I had initially presented at A&E and spent the next two weeks trying to recover. It is not fair that people with CF should have their care compromised due to a lack of the required beds, facilities and staffing. It is time that the Government stand over its promise to provide additional beds at Beaumont. I honestly feel that if I start to become more sick, my only option will be to seek care outside of Ireland because the State is not able to provide me with the treatment and care that I need.”
About Cystic Fibrosis Ireland
Cystic Fibrosis Ireland, established by parents in 1963, is a leading national organisation dedicated to improving the quality of life of people with CF and their families across Ireland. It does this through providing information and education, advice and advocacy to people and their families, offering grant assistance, undertaking research, funding state-of-the-art dedicated CF health facilities and CF clinical staff, and advancing the development of lung transplantation in Ireland. Cystic Fibrosis Ireland comprises 19 branches and one regional branch and is overseen by a national executive committee, which includes representation from people with CF and their families. For more, visit www.cfireland.ie.
Statistics from the Cystic Fibrosis Registry of Ireland Annual Report 2016
According to the most recent Cystic Fibrosis Registry of Ireland annual report, there were an estimated 1,339 people living with CF in Ireland in 2016. Of these, a total of 1,266 individuals with CF were registered with the registry on the last day of 2016, representing 94.5% of people living with CF in Ireland in that year.
Of this total, 565 were children and 701 were adults, and there were more males (58.0%) living with CF than females (42.0%). In 2016, the median age of a person with CF was 20.2 years. In other words, half of the 1,266 individuals were under 20 years of age, and the other half were aged 20 years or older. 2016 is the first time that the median age for PWCF has reached 20 years, i.e. half of the population is over 20 years and half under. The number of people living with CF increases annually because life expectancy has increased in recent years. It is also interesting to note that 8.9% of the population is over 40 years old.
In 2016, 954 in-patient hospitalisations were recorded in 497 individuals. Over 70% of hospitalisations (71.3%) were for the purpose of treating a pulmonary exacerbation. Of those hospitalised for treatment of a pulmonary exacerbation in 2016, 44.4% (n=161) were admitted to hospital two or more times in the year. The average (mean) duration of a hospital stay was 14.04 days and median was 14 days. In 2016, the cumulative total number of days spent in hospital by individuals with CF for treatment of a pulmonary exacerbation was 9,278 days; 1,689 days for paediatric patients, 7,589 for adult patients.