Early last year there was a major controversy, which began on Liveline, over the very poor facilities available to Cystic Fibrosis sufferers in Ireland.
CF patients are extremely vulnerable to infection and therefore need isolation units and other special care. In some countries, where the facilities/care is provided, patients can live until they are 40 or even 50. In Northern Ireland the average is about 35, in the Republic it’s early to mid 20s.
Because of the controversy and subsequent embarrassment the Government promised to take action on the matter but last Friday the HSE announced that the promised facilities were being deferred and would not now be available until 2011, at the earliest, because of lack of funds (Irish Times).
The scandal came to light after a CF sufferer, Bernadette Cooney, wrote a passionate and desperate letter to Liveline last year, begging the Government to provide even the most basic of facilities to give her and her fellow sufferers some hope, she died three weeks ago aged just 25 (Liveline, Friday).
At the time I wrote about the lack of anger displayed by Irish Independent journalist, Sam Smyth, whose daughter suffers from CF.
“The odd thing about Smyth’s interview was his complete lack of anger. He even praised Harney and Ahern for their ‘efforts’ and spoke as if he really believed the promise made by Prof. Drumm that proper facilities would be provided sometime next year. This promise has been made and broken for the last 14 years.”
It is this lack of anger, common to most Irish citizens, that allows chancers like Ahern and Harney to survive and prosper at the expense and suffering of ordinary citizens.
Thankfully, Smyth has finally realised the reality of how the vulnerable are treated in this country. He (angrily) introduced the subject on his show this morning.
“Let’s get stuck into something that’s really disgusting that this government has done and it’s something I’ve got a personal interest in and that is Cystic Fibrosis.
An absolute disgrace, this administration was shamed last year into providing €34 million that would undoubtedly save lives and clearly they’re gambling on those people who are campaigning now that they will be dead soon and therefore it’s a waste of money.
What we should do is find out the names of those people in the department, in the HSE and the hospitals who engineered this between them to get that cut done.
If you live in Newry you will live for ten to fifteen years longer than you would if you lived in Dundalk. Who are these people, who had the authority to do that?”
A panelist provided the answer.
“We know who is responsible, Mary Harney is responsible but she has tried to offload responsibility for years to the HSE.”
I’ve reproduced the email that Bernadette Cooney wrote to Liveline last year, the letter speaks for itself.
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 Vincent’s 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 Vincent’s 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 Vincent’s, 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. Here’s 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.