(Seamus Enright Anglo Celt 26th April 2012 Interview with Lorraine O’Neill)
"THESE are things that should’ve been in place yesterday,” says Lorraine O’Neill, whose daughter Mia lives with the condition. Lorraine, along with another mother Karen Keogan, are among the 40 or more CF supporters who’ve organised to run the Dublin Marathon later this year, one runner representing each person with CF from the Cavan branch.
Lorraine is not looking for ‘sympathy or handouts’. She, like the families and friends of people living with CF simply want the very best care available for their loved ones close to home. CF affects the glands, damaging many organs including the lungs, the pancreas, the digestive tract and the reproductive system. The result is that people with CF are notoriously prone to infection as well as malnutrition. The need for dedicated facilities is urgent given, that Ireland, and in fact Cavan, has one of the highest incidences of the condition in the world. One in 19 is estimated to be a carrier of the CF gene and the standardised ‘heel prick test’ carried out shortly after childbirth is the earliest form of detection.
A 2005 published "Treatment of Cystic Fibrosis in Ireland: Problems and Solutions’, though hailed as a blueprint for the future provision of CF services nationally, does little to serve the needs of PWCF’s in the region. Lorraine strenuously defends the support and commitment shown by consultant physicians Alan Finan, Ann Leahy, James Hayes and Nick van der Spek and their professional care team of respiratory nurses, physiotherapists, nurses and dieticians, however she says where improvement is needed concern is in the on-site infrastructure necessary in treating CF. The Cavan organisation is hoping now to follow the same suit as their counterparts in Mayo who are nearing the completion of their own dedicated €1M CF facility, expected to be operational by the end of the year.
Cavan can at least rule out the need for costly land purchases and planning permissions, hoping their unit can be accommodated within the current hospital confines. They will though still need to raise enough funding to provide for a positive and negative air flow system, essential in minimising the risk of infections and estimated to cost in the region of €90,000.
People with CF (PWCF) demand both medical and physical routine to assist in managing the condition, and though a long overdue CF unit opening at St Vincent’s Hospital in Dublin in June, this journey is still a great distance for a Cavan person with CF to travel for necessary treatment.
"We do need dedicated en suite rooms for our PWCF to avoid the risk of cross-infection from other patients and illnesses both for when our adults and paediatric PWCF are inpatients or temporarily visiting for check-ups or assessments. Facilities like this are considered best practice and are what Mia and all our PWCF deserve," explains Lorraine.
Her daughter Mia is like any other three year old girl loves pink, playing with her friends and shows all the signs of childhood exuberance and innocence associated with seeing the whole world as one bi playground. Mia does though, like any other PWCF, need careful care and attention. Lorraine shows The Anglo-Celt ‘Mia’s Cupboard’, filled with at least nine different types of tablets, each treating and managing different elements of the CF condition and a nebuliser used to assist breathing with a friendly tiger face adorning the mask-piece. All of these things are part of Mia’s daily programme, to you and me medicine; to the three-year-old Mia "they’re things she needs to keep her well". "Calpol is for when you’re sick in Mia’s mind. Mia is a child first and foremost, she just happens to have CF, “Lorraine says. Having enhanced CF facilities, explains Lorraine, means "you’d be bringing your child into an environment that’s safe". She adds: "The only reason why a parent of a CF child would opt for home treatment over bringing them into hospital is because of the risk of picking up an infection. That’s the greatest fear.
The facilities in Cavan are adequate, but adequate is not enough when it comes to caring for CF. There are no parents as lucky as us for the amazing work the people in Cavan General Hospital do, but it’s out of their hands when it comes to providing the necessary safe rooms needed to treat a CF patient at hospital.
"This doesn’t happen to anyone else living with a life-threatening condition, so why should it be the case for people with CF? “Asks Lorraine.
CF Cavan and Lorraine hope to, through a series of fund-raising events, raise funding to go towards providing for dedicated CF patient facilities for both children and adults.
The highlight of these events will be 40 volunteers running the Dublin City Marathon.
"All the people running in the marathon are friends or family of someone with CF. Most of the people doing it have never ran before and are really being pushed out of their comfort zone," says Lorraine.
The group training for the marathon began working towards getting in shape for it in February, meeting twice a week with personal trainer James Murray and marathon runners David McCormack and Peter Walsh on hand to ensure there’s no slacking.
A thankful Lorraine commented:
"The amount of effort and commitment from everyone is just overwhelming. A huge thank you must also go to physiotherapists Ciara O’Malley and Ian O’Reilly and to Breffni Park for use of the track. l feel like pinching myself sometimes at the effort so many people are putting in for our cause. We’re all getting to know each other and becoming friends, giving each other support to help each other on.
"PWCF shouldn’t have to beg for facilities, a person with Cystic Fibrosis has a big enough fight each and every day of their lives as it is.”