OPINION:People with CF and their supporters have built this unit from the ground up with heart and compassion, writes
ORLA TINSLEY
THIS MORNING the dedicated cystic fibrosis (CF) unit at St Vincent's hospital is opening to patients.
All week my friends and I, who are in the hospital for treatment right now, have been contacting each other in excitement.
This momentous occasion is one of which we should all be proud. The rooms we will move to are on a designated CF ward, which has 20 cubicles with en suites, including exercise bikes or treadmills, TVs and internet access. These facilities will help with the many weeks, sometimes months, we spend within these walls - but mostly what it will do is keep us all alive longer.
It will ensure for the next generation that this long battle will not consume their lives.
It has been seven years since I began writing on these pages about the need for treatment in single, en-suite rooms on a dedicated ward for people with CF in Ireland.
It is more than 15 years since the current consultant and CF staff began lobbying for these facilities and seven years since the Pollack report by the Cystic Fibrosis Association of Ireland was published. It told of the grim and dangerous facilities in this State for adults with cystic fibrosis. Finally we are here.
It is people with CF and their incredible supporters who have built this unit from the ground up with heart, compassion and giving of themselves.
The 100-bed block cost €22 million and encompasses wards with isolation rooms for people with cancer, MRSA and neurological issues. But the cost has been greater than any money can calculate, in terms of lives, heart, sheer grit and unflappable determination from all involved.
There is a sense of complete separateness, when standing inside the building, like walking in a dream. Then there is that feeling deeper in my gut, that feeling of completion, the sense of being in a place that is so familiar because we have waited so long to see it.
The fight for equality of care has been long and punctuated by much sorrow and disappointment, manoeuvres which have blocked funding and squabbles over sites and contractors.
What has been the overwhelming fuel though for all involved is the support and energy given by those who saw the injustice, those who rallied behind us in support, in small and big ways, in public or in private.
This is not just a building. It can be said, without any sense of overzealousness, that this building is a part of every single person who fought for it. It would not be here without dear friends who used their last weeks on Earth to take to the airwaves to push the bricks of change uphill. We would not be here but for them.
However, there are still issues we need to keep an eye on, while access to care needs to increase across the State so all people with CF can be assured of a better future.
We have always needed 34 beds to deal with the amount of people with CF who attend Vincent's. We have been given 20 and last May the hospital promised there would be others available if needed.
A nightmare scenario would be requiring admission and having to go through A&E to a mixed ward when the CF unit is running. It could be a possibility if promises are defaulted on, but hopefully that won't be the case.
As it stands, the agreement is that people with CF will only be in the main hospital if none of the 100 cubicles in the new building is free. If this happens, once one becomes available they will be transferred immediately.
The new reality, as long as the hospital keeps its promise, means there will be no fear. There will be no fear of A&E, no fear of being treated by staff who are not trained in our area - a challenge for staff and patients alike. It means going directly into a room for treatment instead of staying at home and becoming sicker for fear of picking up a potentially deadly infection on mixed wards.
It means easing of the psychological burden that comes with sharing with patients who are sometimes senile and very unwell, and the knowledge that the facilities we now have match the superb standard of care we are given.
This facility will change the way people with CF receive care and will ensure the next generation of patients moving from children's hospitals will never need to experience what we have. The very existence of this building symbolises hope for the future and the ability we have to change our prescribed paths in life.
As much as a building can, it protects the future so that all energies can be focused on living and succeeding in whatever walk of life chosen despite this illness and not having to fight on all levels in order to survive.
Thank you to everyone who has poured their hearts into this. We are finally here.