Listeners to the Ryan Tubridy Show over the past few days will have heard how difficult it is for parents to source specialist equipment for their children with special needs. Specially-adapted chairs, ceiling harnesses, bathing apparatus, all these things can make such a difference to a child's quality of life. But they’re not cheap. On Tuesday’s show, Ryan spoke to Katie Healy Nolan, whose daughter Penelope only got the special support chair she needed after a fundraising campaign. Then on Wednesday, Brenda O’Connell Barry told Ryan how her son Fionn also needed specialist equipment and how hard it is to get that equipment. Indeed, the HSE deems some equipment as "luxury items", rather than essential equipment. Brenda explained what this means in terms of what Fionn needs:
"A ceiling track hoist and a changing table for Fionn. They’re deemed as luxuries for families like ours."
Fionn has a rare genetic disorder and requires full-time care. From birth, Fionn screamed for up to 18 hours a day, seven days a week. When he was 6 months old, he got a diagnosis of infantile spasms, an extremely rare – and dangerous – form of epilepsy.
"They told us, you know, this little boy will be lucky to see 2 years of age."
Although he’s nearly 7 now, Fionn can still spend long periods of time not sleeping and screaming in agony – it’s not something that a treatment has been found for or he’s grown out of.
"He’s a really, really unique child and he has a very unique genetic mutation, which we just have not been able to find an answer and not been able to find one particular medication that helps that agitation that he has."
Brenda spends all her time caring for Fionn and a lot of that time can involve crying and wondering. When her husband Trevor comes home from work, Brenda sometimes goes out to the garden for a brief bit of respite.
"I’ll just stand out in the yard and I’ll just wonder, you know, why – why does our little boy have to suffer so much and why can’t we find something, you know, to help him, to alleviate the pain, you know. And it’s just, it’s soul-destroying. It’s horrendous."
A ceiling track hoist would allow Brenda to move Fionn without hurting him or herself. It costs €9,000. The Irish health service deemed it a luxury item. Better, it seems, to have a 6-year-old child with special needs in pain than to fritter away money on luxuries. A height-adjustable changing table would enable Brenda to change her son safely and securely. It costs as much as €5,000. When she requested a changing table for Fionn, Brenda was told no:
"I was told to change him on the bed. That in our particular area, we don’t get funding for those kind of things."
Both the hoist and the changing table were bought through fundraising and Brenda is very grateful to her community and her friends. Fionn also needed a supportive wheelchair, after an assessment told his parents that he was at risk of scoliosis and again Brenda and Trevor had to turn to fundraising to provide the wherewithal to purchase the chair, as the HSE told them they would be waiting 18 to 24 months. As Ryan said, if the system worked for children and people with special needs and their carers, this endless fundraising wouldn’t be necessary.
"It’s absolutely humiliating to have to go out and fundraise. Like, no family wants to do it, nobody wants to do it, we don’t want to do it. We would just love it if, you know, there should be some forward thinking, there should be a way for all families like ours to have access to these pieces of equipment and when we’re finished of them, we’ll give them on to a smaller child."
Makes perfect sense, but when it comes to resourcing equipment for those who need it, Ireland prefers, as Ryan put it, "the shambolic approach". You can hear Ryan’s full conversation with Brenda O’Connell Barry by going here.