Ruth O’Boyle’s second son Peadar was born prematurely at 24 weeks. Three days later, he experienced a bleed on the brain – the first of a number of health challenges.
“We were told from day three his life is going to be impacted by this,” she said. “It’s going to be physical because of the side of the brain that was impacted. But we were also continuously told that cognitively he’d be affected as well.”
The family was told Peadar was at a “very high risk” for cerebral palsy (CP), a group of movement disorders that varies among people but often involve poor co-ordination, stiff and weak muscles, and tremors.
Peadar was diagnosed shortly after being discharged from hospital and the family was linked in with their local children’s disability network team.
“The referral was sent and they came to see us. But that really felt like a box-ticking exercise,” Ms O’Boyle said.
“Peadar is categorised as P1, which means the highest priority. The last time we saw OT [occupational therapy] was December 2022. We’ve had one SLT [speech and language therapy] session in three years. We had sporadic physio sessions in the first two years, but for the last year it’s been purely equipment.”
In recent weeks, Peadar had an appointment with a physiotherapist to trial a new walker. Ms O’Boyle said it took four months for the appointment to be scheduled, and it lasted a couple of minutes.
“For a three-year-old with CP, four months is huge. If we had that walker four months ago, Peadar would be running around.”
Ms O’Boyle was speaking in advance of Cerebral Palsy Awareness Day, which is today and will see the Cerebral Palsy Foundation highlighting the difficulties many families have in accessing services.
According to a survey conducted by the foundation, which asked almost 400 people with CP as well as caregivers and healthcare staff about their biggest concerns, accessibility of services was one of the most challenging aspects.
Some 97 per cent of respondents cited regularity of treatment as a top concern, with 85 per cent stating there was a need to reduce waiting times for appointments.
Denise McDonald, a consultant paediatrician with a special interest in neurodisability and associate professor of cerebral palsy at Trinity College Dublin, said early intervention for children with CP is “absolutely critical”.
“That early intervention has the be provided to every child in Ireland,” she said. “If you’re referred after two years, the waiting list is years for some of those teams. In the early months and years, there is something called brain plasticity. And if you harness that early, you can get better function.”
She added: “While the vision is that services are the same around the country, the expertise that is available around care provision for people with cerebral palsy is a little bit ad hoc. Every individual should have access to timely and expert assessment and therapy input.”
The HSE was contacted for comment about the provision of services.
Ms O’Boyle and her husband Aidan felt the need to pay privately for therapeutic services to ensure Peadar could receive the support he needs, but she said this has put a “financial strain” on the couple.
“I’m fully aware that saying we were able to get him physio and OT, we’re in a privileged position to be able to do that. But you can see the results and benefit already,” she said.
“We were told he would never talk, he’d never walk and he’d most likely be blind. Now he does have vision impairment from the bleed. But Peadar is talking. He’s not independently walking yet but he’s on his way.”
