'You would wait with packed bags for days' – boy (10) had life-saving chemo sessions cancelled because of bed shortage
The mother of a young boy with an aggressive form of cancer has spoken of being terrified at suffering several delays in chemotherapy – one lasting for as long as 11 days.
Agnes O’Shaughnessy, from Shannon, Co Clare, whose son Alex (10) has rhabdomyosarcoma, is among a number of families caught up in the nightmare of having chemotherapy sessions cancelled at Crumlin Hospital.
“Alex was diagnosed in April and the delays started in September. We had delays lasting four days and five days. But the most terrifying was 11 days,” she added.
“Alex has had around 20 days of bed delays, which is equal to a full chemotherapy cycle.
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“It seems to be epidemic. The cause of the cancellations is not having enough beds, but we were also told at times there were not enough staff.
“We had enough to deal with and then had these bed battles. Some of the most stressful days we have had over the last seven months have been the days we had to wait on news about the availability of a bed.”
Ms O’Shaughnessy said she is worried about the cumulative effect of the delays on her son, whose cancer is rare.
The distressing call from the hospital would come the night before the family planned to travel to Crumlin for chemotherapy having had his bloods assessed and indicating his fitness for the treatment.
“Then you would wait with packed bags for days on end not knowing when you would be admitted. You could get a call anytime up to 7pm to go to Dublin to secure a bed and start treatment the next day. As we are three hours away we had to travel straight away.”
The chemotherapy sessions Alex had were spread over three days but other children could be in hospital for longer.
“The hospital in a public statement in response to the attendances due to RSV infection referred to the cancellation of routine treatments but did not mention chemotherapy. There is nothing routine about chemotherapy.”
Alex has also been to Essen in Germany, where he had radiotherapy.
“He is responding well and always bounces back but you are left questioning the impact these delays will have,” said his mother.
“We asked for reassurance but nobody could tell us it would not have a clinical impact. Nobody has said that straight out despite us asking on many occasions.
“The staff are amazing and are not to blame. They are overwhelmed too and have to deal with very upset parents on a daily basis.”
Alex is moving onto maintenance chemotherapy so can be treated as an outpatient. “It’s a relief to know we are free from these bed battles. But I cannot stay silent for the sake of other families,” she said.
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