After being honoured at the Rehab People of the Year Awards, Orla Tinsleysays the award signifies how far we've come in the struggle for life-saving services, but it also reminds us how far we still have to go
THREE YEARS ago I started campaigning in this newspaper for better cystic fibrosis (CF) services in Ireland, although at the time I wouldn't have called it campaigning. At 18, as one of the more than 1,000 people in Ireland living with the disease, all I knew was that CF patients were dying at a younger age here than in other countries. This made me so angry I had to write about it.
Publishing damning articles about our health service wasn't a particularly daring or selfless act - in fact, you could say it was a desperately selfish one.
For this reason, winning at the Rehab People of the Year Awards over the weekend, while an honour, also felt strange. For me, more than anything, the award signified how far we've come in the struggle for world-class, life-saving services, but it also reminds us how far we still have to go.
I was more than naive back in 2005 about what would happen as a result of my articles. I actually believed that once the powers that be knew what was really going on, once they knew that the lack of dedicated resources meant cross-infection between CF patients was a frightening reality, they would step in.
At one stage around that time I shared a room with two other patients, both sicker than me and awaiting transplant. By sleeping in the same room, coughing up infected sputum in the same air we endangered each other. It's a strange experience watching someone your own age and thinking about the danger they present.
Sometimes it is near impossible to accept that immediate action is not taken to fix these things. These were facts I quickly realised at 18, entering adult services for the first time.
The next realisation was that there was an entire community of patients who had become used to experiencing all of this, and who were dealing with it - who had to deal with it - because there was no choice.
When it comes to the health system, it's hard for people to stand up and speak out against those people, from the cleaners to the consultants, who represent survival. It is a catch-22 situation. You need to go to a hospital when you are vulnerable, but then you find it's not safe. You feel even more vulnerable if you give voice to your fears.
Talking about Ireland's most commonly inherited illness was and is necessary, but it isn't always easy. After I started speaking out, other people with the illness gradually became more vocal through interviews and newspaper pieces. This took great courage. It is hard to put yourself constantly out there when you are at the age when you should be enjoying school, college and anonymity. And each time it was a little harder to talk about, particularly as so little visible change was seen.
The show of solidarity from the CF community in January 2008 following an article I wrote on these pages showed just what people who fight chronic illness are made of. It showed why, as strong, resilient people, they deserve respect and not ignorance. In a post-Celtic Tiger Ireland, the issue seemed to affect the nation, as people rang The Joe Duffy Show and offered to fund and build a dedicated CF unit.
Last February, Minister for State Pat Gallagher said: "The HSE advised that a total of 14 single en-suite rooms for cystic fibrosis patients would be provided at St Vincent's by the end of the summer."
The state-of-the-art, dedicated centre of excellence for CF is promised to be completed by the end of 2010. This will make life safe and easier for CF patients in Dublin and surrounding areas. It will also alleviate pressure for staff who work in cramped conditions. In St Vincent's alone, staff deal with over 300 patients with different infections and different needs.
Now the good news is that there are eight single en-suite beds in St Vincent's University Hospital, but the plans for the extra six beds are unclear. It is said the unit is being monitored to see how well it functions before further action is taken. The eight beds make a tremendous difference to CF patients. Our fear of being hospitalised is reduced, as long as we can get into one of those eight beds.
It is now mandatory that no two CF patients share the same room, as was happening up until 2007. However, there is a waiting list for the new interim ward and beds are allocated according to infection-control guidelines. There are 25-30 patients with CF in at any given time and the CF patients who are unable to benefit from those beds are still where they were last January.
The first transplant of a CF patient took place in July 2007 in the Mater hospital in Dublin. Although there has been no other CF patient transplanted since, it is a step in the right direction.
There are still a number of patients with more complex issues on the Newcastle list, where four transplants of CF patients have taken place this year.
The CF Association's newsletter said it was "very concerned about the limited number of organs becoming available for transplant, particularly lungs" and noted it had been "unsuccessful in securing a meeting of the main stakeholders involved in lung procurement and transplantation", despite a meeting being set up for last May.
According to the CF association's chief executive, Godfrey Fletcher, the CF Foundation in the US is now saying that it expects that, by 2020, any child detected at birth can expect to live a near normal lifespan.
The strain in North America is milder than in Irelandand inpatient treatment and home therapy treatment are better. They are also at the forefront of technological and medical advances and have better facilities and a better quality of life than Irish patients.
Ireland's future with CF could be one of the brightest, but we have to continue making the necessary steps to get it there. An award recognising the efforts of CF patients is positive reinforcement that we are no longer the ostracised minority we once were, but rather a respected community pushing for change and basic human rights - the entitlement of any patient, in any hospital in our country.