Paediatric care in Ireland : The fight to be heard

Majella Power-Griffin

If 2020 and the impact it has had on the world has taught us anything, it is that we are no longer the author of our own lives. We are not even the protagonist of our own story. We have been reduced to a character that is simply dispensable in the grander scheme of things. We are peripheral, our impact on the narrative insignificant. Now, at the mercy of agenda driven publishers, who determine our fate, our important stories are falling through the cracks.
I know this situation all too well. The out of control feeling when it comes to the hampering of the health services in Ireland as a result of covid19. Let’s face it; our health system was creaking at the seams prior to the pandemic. It simply burst it open, scattering essential services to the wind. Services that this country cannot do without.

My son has neurofibromatosis type 1 (NF1). Diagnosed when he was 3. He is in the unlucky percentage to have a deformity of the bone and unluckier still to have it in his forearm to wrist. Back in January 2020, he suffered a small fracture to his wrist while exercising. He has poor balance due to a low-grade glioma in his brain and to aid with this he must do core strengthening exercises regularly.

The fracture itself was unusual; the impact he suffered would normally not be significant enough to cause the break. After having an x ray, we were informed that it was a ‘pathological’ fracture, meaning that it was related to his condition. In addition to this, the x-ray revealed that one of his bones had stopped growing. Limerick were not equipped to deal with the issue and an urgent referral was sent to Dublin.
Over the next few weeks his wrist rapidly declined, twisted dramatically and lost power to the point where he would drop items he was carrying. The waiting list to see the orthopaedic

specialist in Dublin was shocking. Impacted further still by the covid19 outbreak. It was simply something we could not entertain. We made the uncomfortable decision, during a nationwide lockdown, to bring him to A&E in Dublin, with the hope to speed up at least some part of the process. We were simply left with no alternative.
The specialists in the hospital were shocked to see his arm. He stayed there for a week, while scans and other tests were conducted. With the rarity of the deformity, discussions would have to be made as how best to proceed. Understandable given that they have admitted they had never seen anything like it before and it would take a roadmap of surgeries over the next few years to correct. We were assured that within the month he would be called back to begin his surgical journey; but here we are 19+ weeks later with little to no communication with the hospital despite multiple phone calls and a letter from our paediatrician. All the while his arm deteriorates. Silence is not golden. Silence is not peaceful. It is instead a deafening alarm of hopelessness. One that gets louder every day. The alarm that alerts you that your house is filling with smoke. Your calls for help getting choked by the fumes; all the while the flames are being fanned by those who are tasked to extinguish the fire. They preach that they are doing their best, they preach that services will resume as normal but for some it will be too late, irreparable damage and death will occur due to a system that is not fit for purpose; and has been unfit for purpose for far too long.

Our government have failed those at risk. They have failed those with disabilities. They have failed the people of this country. This would still be a fact without covid19 having its grip on our small island. It’s a sad state of affairs when your health care providers can’t give you answers, when you have to speak with local politicians to see how much influence they can yield in order for your voice to be heard. No matter what your political persuasion I have always found local representatives are worth their weight. I have to pay compliment to TD Kieran O Donnell and his constituency team who have been onboard with us since our sons diagnosis, with regard to financial aid and entitlements and in recent weeks have been trying to put pressure on whoever will listen to get us answers. I also must pay compliment to St. Pauls NS Dooradoyle, who have encouraged and aided our son while fostering as much independence as possible, in particular his SNA Joan.
There are many good people that want to help you. They reach out to you. Those people are why this country functions; they are why people survived lockdown; they are why people are still with us. Our government pats itself on the back for a job well done. Your job is not done. You need to atone for your mistakes. You need to represent the people not your own vested interests. You need to line the pocket of the frontline staff not your own. They are essential in our lives, irreplaceable; you are not! Stop the haemorrhaging of the HSE. Health is wealth. Our country cannot survive on promises. We need progress, we need action, and above all we need functioning leadership. One that cares about our stories. Unfortunately for us the publishers of our novel are not interested in what we have to say.

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