Father writes to Harris as daughter’s wait for a vital operation continues
The father of a Sligo born girl who is waiting 16 months for a scoliosis operation will today deliver a letter to the Minister for Health, Simon Harris, at Leinster House.
Aaron Daly’s 12-year-old daughter Sophia is in dire need of an operation to correct a curvature in her spine, but she was taken off an urgent waiting list.
Sophia has cerebral palsey, arthrogryposis and scoliosis as well as epilepsy.
She developed scoliosis in 2013 and underwent surgery two years later. A rod was placed in her back, but it has since come loose and she urgently needs an operation.
Sophia was taken off the urgent waiting list last year when pre-operative tests showed a problem with Sophia’s breathing
he letter, which will be delivered by Sophia’s Dad, Aaron, today says the following:
Mr Harris,
Despite you refusing multiple requests to meet with me to discuss the crisis in scoliosis care during your term in office, I feel it necessary to highlight the obvious failings in the care provided for the 188 children that are currently waiting on scoliosis lists.
Despite new and renewed scoliosis action plans from your government the reality of the situation is that children are unnecessarily suffering and developing additional complications. This is a direct consequence of the failure to address some fundamental problems.
My 12-year-old daughter Sophia has now been waiting on an urgent waiting list since April 2017.
You made a statement on the 30 th May 2017 stating that any child needing spinal surgery would not have to wait more than four months by the end of 2017. This has clearly failed and is causing untold suffering for children like Sophia who has now developed additional complications.
International best practice states that surgery intervention is far more successful when carried out within six months. Children that are left longer are likely to require additional surgery and develop additional complications. Early intervention is practically non existent in the HSE.
Your department and the HSE have failed our children. Your lack of empathy and willingness to speak with families like ours who know the failings in the system have further prolonged the suffering. I would like a formal meeting to discuss this crisis.
Your department and the decision makers in the HSE need to address the following issues:
1. We need the theatre to open five days a week and more if necessary to clear the backlog.
2. For this to happen we need dedicated PICU & ward beds allocated to scoliosis children.
3. Budget restraints should be lifted to ensure that these lists are cleared and the treatment abroad scheme should be fully implemented to help reduce the number of children waiting.
4. The additional money needed to cover staffing, theatre time and proper recovery services should be immediately made available.
5. I feel that you and some of the decision makers in the HSE should spend some time with our children and see the effects of their deterioration. The effect on their quality of life and the massive effect on our families who are struggling to care for their loved ones. The direct consequences of a health system that cannot offer early intervention.
We no longer live normal lives, we have the physical burden of nursing our children and often feel helpless to ease their suffering. There is an additional strain on every relationship at home, brothers & sisters lose out on a normal childhood activities and see things that children should not have to witness.
To add insult to injury every government advertisement portrays a progressive modern Ireland full of respect and understanding for our fellow citizens. An Ireland of equal opportunity and understanding.
This could not be further from the truth when you have a look at how the special needs children of Ireland are treated. Who is accountable for the failings in our children’s care?
History will show that you and your government failed Irelands most vulnerable in a time of plenty.
Aaron Daly