“THE comment where he said that it is winter and there is an increase in viruses, that children that are having chemotherapy shouldn’t come to hospital. Where does he propose we go?”
Shannon’s Agnes O’Shaughnessy has a lot to be angry about this week. Bad enough that her 10-year-old son was diagnosed with cancer earlier this year, bad enough that he had to get some of his treatment abroad, bad enough that he was hit by an 11-day delay for his last round of chemotherapy at the National Children’s Hospital, without the Taoiseach making such comments.
Make no mistake, insult has been added to injury.
She says the other parents of children suffering with cancer are also unhappy. “We have a closed Facebook group and all the other parents are confused about that comment. Where does he propose we go? We can’t not have chemotherapy from November to April. The new children’s hospital won’t be available for three years. Alex can’t wait for three years. None of the children can wait three years. Something needs to happen now. That’s the disappointing thing.”
Agnes has been in the national media in recent days, as she spoke publicly about the delays Alex was facing in getting the chemotherapy he required, due to a lack of beds at the Children’s Hospital in Crumlin.
When they came back from Germany in late September, young Alex still had three cycles of chemotherapy to complete, all to take place in Crumlin. However, all three of them were delayed. “Over the three cycles, we’ve had a delay each time. There weren’t beds available on the day he had to have it. We had a four-day delay, a five-day delay and then an 11-day delay to his cycle.”
Earlier in December she posted on social media about the delays being faced by Alex, as she wanted to let people know the reality, after hearing that so- called ‘routine’ procedures at the Children’s Hospital were being cancelled. “I said that people are talking about routine procedures being cancelled but I have a child here who is 10 and can’t have his chemotherapy because there is no available bed. To us, and to everyone; chemotherapy is not routine.
“A statement had been released by Children’s Hospital Ireland that week and they said that the hospital was experiencing unprecedented numbers and that routine procedures were being postponed. We were caught up that week, Alex couldn’t get a bed. In fairness they were trying but the numbers of sick children were increasing every day so they couldn’t take him in. We got a bed on the Monday and by the time he got his chemo he was 11 days delayed.”
She is concerned about what implications such a long delay could have for her little boy. “Nobody has addressed what clinical impact will it have, how does this affect his treatment and prognosis.”
Too often health services in Ireland become political footballs, with leaders promising improvements in the future, but nothing for people immediately effected.
At the moment certain people are saying the situation will improve in the future when the new Children’s Hospital is built, but Agnes doesn’t buy it. “There are things that could be done instead of saying in three years time it’ll be all okay. The new Children’s Hospital doesn’t add any extra capacity to oncology patients.”
She adds, “The flu happens every year and we’d like to see some sort of extra resources put into paediatric oncology. The numbers are increasing and the services aren’t matching that.”
As a working mother of a child with cancer, Agnes has much better things to be doing than fielding calls from journalists, but she feels attention needs to be drawn to the situation if anything is to change. “I don’t think any family should have to go public. Last week and the week before Alex should have been our concern. Alex is finished his inpatient chemotherapy now and we should have been able to enjoy that space and time. That’s where the system lets you down, no family should have to go public but people need to know and nothing changes until the problem is highlighted.”
Agnes admits to being exhausted, having been through a maelstrom since Alex’s diagnosis in April.
Thankfully her son is now finished with being an inpatient and she is hopeful things are going to get a bit better as he receives maintenance treatment. “It should be a lot easier, he’ll go back to school, he’ll be able to go back training.”
Now, she wants to enjoy a good ending to what has been a hugely difficult 2019. “We’ll have a lovely relaxing Christmas, no fussing, hopefully no hospital visits.”