Parents of child cancer patients have described their “upsetting and frustrating” experiences of delayed medical appointments.
Speaking to RTÉ’s Morning Ireland, one mother said that when her son’s cancer treatment failed to proceed as planned on his first birthday, “it was like someone punched me”.
Earlier this week, Sinn Féin leader Mary Lou McDonald told the Dáil that 800 chemotherapy appointments for children were cancelled last year. This was later disputed by Children’s Health Ireland.
A CHI spokesperson said the majority of delays or deferrals were due to patient-specific reasons and based on clinical decisions relating to the patient’s medical condition at the time.
However, families have been speaking to RTÉ’s Morning Ireland about the impact of such delays and warn that “they should not be happening”.
Among them are the Hynes family from Galway.
Paraic Hynes, whose 13-year-old daughter Bridget has now finished her cancer treatment, explained how she experienced a number of cancellations during her ten-and-a-half months of chemotherapy.
When Bridget was receiving treatment, the Hynes family needed to travel from Connemara to Dublin – a four-hour journey each way.
The day before, Bridget’s bloods would be tested in Galway and the following day they would wait for a call to go to Dublin.
Sometimes that call was to say Bridget’s treatment needed to be cancelled because a bed was not available.
Mr Hynes told Morning Ireland that a number of appointments for Bridget were pushed back – or cancelled – for a day or two. But the worst delay was for six days.
“Anybody that’s visited the hospital in Crumlin understands that it’s an extremely old building. They work absolute miracles there,” he said.
“She would have had six cycles of chemo with three different chemos in each cycle. I’d say out of all of them, I’d say we probably had three or four of those visits – max – that went ahead when they were supposed to go ahead.
“Outside of that you would have definitely been pushed back by a day or two days, but then the worst came for us, I think, she went into the sixth day.”
Mr Hynes said delays can happen if bloods are not reaching the standards for treatment. However, in the cases where Bridget’s treatments were cancelled, the majority related to bed shortages.
“They could be pushed back because of their bloods. But even at the time when her bloods were good there was a lot of times that we were told there: ‘Unfortunately, we don’t have a bed’,” he said.
He said he was aware of the debate between Sinn Féin and Children’s Hospital Ireland regarding cancellations, but said that the family were told on at least one occasion that the cancellation was “due to a lack of beds”.
Eimear Sullivan from Sligo regularly drives her five-year-old son Rían to Dublin for leukaemia treatment.
Rían’s appointments have been cancelled on occasion. One time this happened when the family reached the M50 after already travelling three-and-a-half hours to the capital.
“Rían’s treatment is in 12-week cycles and in each of those 12 weeks, he has to travel four times,” she said adding that five appointments had been cancelled since the start of his treatment in September 2021.
“I had left home at 4am to get to Crumlin for theatre. He was first, or he was due to be first, on the list into theatre for his chemo. I got a call when I reached the M50 to say that there was no beds available for Rían that day.
“I had to turn around and drive back to Sligo. I think it was actually the following week that we received the appointment for the chemo.”
Ms Sullivan added: “It’s very upsetting. It’s frustrating. You’ve gotten him ready for the journey and you’ve prepared him that he’s going to theatre. You’ve told him about the anaesthetic. It is very upsetting for him.”
Asked where the fault lies in the system, Ms Sullivan said in her opinion the issue was bed capacity.
“Now is the time to make sure there are enough beds available for children with cancer [in the new children’s hospital],” she told Morning Ireland.
Niamh McCann’s son CJ – who was born two years ago – died last October from a brain tumour.
Ms McCann, who is from Ballaghaderreen in Roscommon, is surprised that the issue of child cancer appointment delays is only making headlines now because it was an issue when her son was receiving treatment.
“CJ spent 11 weeks from diagnosis in hospital. We were all set for his third round of chemo,” she said.
“We were told to make a phone call on a Tuesday morning – and it was actually CJ’s first birthday – only to be told that there was no bed.
“I cannot tell you what that felt like, because if I had to go back to that moment I’m not sure I could stay standing.
“I remember I was in my bedroom when I was told that and it was like someone punched me. You’re so helpless when your child has cancer,” said Ms McCann said.
