CYSTIC FIBROSIS

Clare Meleady

Sasha Delaney

This is a photograph, sent in by a Liveline listener, of a room in a hospital that a patient with Cystic Fibrosis had to endure.

From Thursday 10th January to Friday 18th January 2008, Joe spoke to people with Cystic Fibrosis and their relatives about the appalling lack of services in Ireland.

On Friday 18th January, Joe was joined in studio by Sasha Delaney and Clare Meleady - two women in their twenties with Cystic Fibrosis.

To listen to the programme, click here

Build 4 Life

Build 4 Life is an organisation that was set up to raise 1 million Euro to help create a dedicated CF unit in Cork University Hospital.

Website: www.build4life.net

Cystic Fibrosis Hope Source Foundation

Alison Dempsey who spoke on Thursday's programme fundraises with the Cystic Fibrosis Hope Source Foundation.
www.cfhopesource.org

Bernadette spoke to us on Tuesday 15th January 2008. Below is a transcript of the email she originally sent to Liveline.

Sadly, Louise Bernadette Coogan died on February 25, 2009.

Dear Joe,

First and foremost I want to thank you so much for the coverage you have given CF patients over the last few days. Unfortunately, after years of listening to the same thing over and over again, I have absolutely no faith in the HSE or in Mary Harney and am not holding out any hope that anything will be done.

I am 24 years old and have cystic fibrosis. I am currently an inpatient in St Vincents Hospital in Dublin for a severe chest infection. I have been here since the 2 January and there has been no significant improvement in my condition. I have been informed that my disease is progressing and I won't be able to regain the level of health that I had 6-12 months ago. Transplant has also been put on the agenda. I can't put into words how absolutely devastated I am-as a CF patient you make the best of everything and try to ignore the statistics that are staring you in the face, but when it is spelled out for you it is truly awful. Every day is a massive effort now as I struggle to fight and maintain the exhaustive regime of treatment I must undergo which involves oral, nebulised and intravenous antibiotics, physiotherapy, nutritional supplements (and possibly having a feeding tube inserted) and oxygen.

The constant stream of anger and indignation in the media must start to sound confusing to the everyday person as there is such a massive web of problems for us within the services and facilities we are offered. However I just wanted to add my piece and get it off my chest. Here are a few points that I feel are important.

En-suite Rooms are NOT A LUXURY - They are a Basic Need

firstly, as has been pointed out lots of times in the last few days, going into the current mixed and cramped conditions in vincents is extremely dangerous for CF patients. We are at a low with infection and are open to any bugs flying around. These bugs can spiral out of control and could kill us. That is a fact. It is not as if we are looking for some kind of luxury-we are just looking for the basic and necessary treatment for cystic fibrosis which is recognised as international best practice. We NEED isolation units with en-suites and we need them now.

Intensely Depressing Scenario Regarding Conditions

it is hard to describe how truly soul destroying it is to be put in a ward with 5 patients who are elderly and often senile and incontinent. I make a concerted effort each day to be strong and positive and to fight my illness, but just imagine trying to maintain this frame of mind when you are stuck in your bed because of o2xygen dependency while all around people are calling out for people who aren't there, and are regularly soiling their beds or using a bedpan, making the smell in the ward unbearable. It is so horribly depressing. May I also point out that the ward is where the meals are served. Would you eat your dinner in a public toilet? Because that is basically what I am expected to do EVERY DAY. Sometimes all I want is a bit of peace and quiet and maybe to curl up in a comfortable place on my own. Even this simple desire is not possible in here. Each time someone dies in your room you are forcibly confronted with the reality that someday this could be you. What did I do to deserve this? Do I not have the right to be protected from this?

Mary Harney's Private Hospital "Solution" and Staffing Levels

Although all the coverage has been about the lack of facilities, it is important to note that the staffing levels are also dangerously inadequate. If you refer to the report on CF services in Ireland conducted by Dr. Ron Pollock this is stated quite clearly. However whenever the issue of cystic fibrosis is raised with Mary Harney, she tells of how funding has been allocated for new staff. While some funding has been allocated and there are now two consultants in St Vincents, all the consultants in the world won't be able to get me a bed when I need it if it is not available, and they can't magic isolation units out of thin air. If the problem is to be tackled extra staff alone will not alleviate our situation.
Also Mary Harney's idea of freeing up public beds by building private hospitals does not help CF patients at all. While it MAY mean a shorter stay in A&E, which, I might add, is a ridiculously dangerous situation, it does not address the issue of single isolated room with en-suite, which are VITAL. I want some answers. Why is this allowed to continue? Would Mary Harney like to step into my shoes for a day? I don't think so.

As I write this, my 6 bed room has finally quietened down, but I'm sure that I can look forward to some noise later on. Heres hoping for a good nights sleep.

I also want to say that despite all of this mess, the CF team and the staff of St Vincent's hospital are nothing short of amazing, and I feel so lucky to have them looking after me. I couldn't ask for any better, each and every one of them is just fantastic.

Yours Sincerely,

Bernadette