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Wednesday 22 January 2020

Hospital delays of vital chemo sessions for kids 'terrifying' for parents

Alex O Shaughnessy, whose chemotherapy was once postponed for 11 days
Alex O Shaughnessy, whose chemotherapy was once postponed for 11 days
Simon Harris. Photo: Collins Dublin/Gareth Chaney

The mother of a young boy with an aggressive form of cancer has spoken of being terrified at suffering several delays in chemotherapy in Crumlin Hospital - one lasting for as long as 11 days.

Agnes O Shaughnessy, from Shannon, Co Clare, whose son Alex (10) has rhabdomyosarcoma, a muscle tissue cancer, 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.

Epidemic

"Alex has had around 20 days of bed delays, which is equal to a full cycle.

"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.

A spokesman for Crumlin said admission dates are changed periodically for a number of reasons, including demand on available beds.

Crumlin "is very cognisant of the impact on patients with cancer and their families that a change in admission for chemotherapy has, and sincerely regrets that on occasion, deferment of planned admission occurs".

"The decision to delay planned in-patient admission is not undertaken lightly and when such a decision is made, it is made a priority at all times to ensure a safe environment, with the safe delivery of care to all patients," the spokesman added.

Due to several weeks of significant pressures on in-patient beds due to respiratory viruses that impact on children, Crumlin has, so far this month, had to postpone five in-patient admissions for cancer treatment .

Three were delayed by one day and two postponed for two days. All patients impacted have started their treatment and are back on their schedule.

Health Minister Simon Harris, who announced more beds to deal with the winter crisis this week, said the children's hospitals will benefit.

Ms O Shaughnessy said the distressing cancellation call would come the night before the family planned to travel to Crumlin - after Alex had his bloods assessed to indicate his fitness for the treatment.

"Then you would wait with packed bags for days on end not knowing when you would be admitted," she said.

"You could get a call any time 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.

In a public statement, the hospital referred to the cancellation of routine treatments but did not mention chemotherapy.

Ms O Shaughnessy said: "There is nothing routine about chemotherapy."

Alex has also been to Essen in Germany for radiotherapy.

"He is responding well and always bounces back but you are left questioning the impact these delays will have," Ms O Shaughnessy said.

"We asked for reassurance but nobody could tell us it would not have a clinical impact. The staff are amazing and are not to blame."

Alex will soon be moving onto maintenance chemotherapy so he can be treated on an outpatient basis.

"It's a relief to know we are free from these bed battles. But I cannot stay silent as other families will face the same problem," his mum added.

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