Sharon Keogan: Urgent plea as children wait years for surgery
Sharon Keogan spoke in the House about the national treatment of scoliosis, urging the state to ensure timely inpatient and outpatient care. She criticised long waiting lists and used the cases of Jamie McGinley and Katie Byrne to illustrate the human cost of delays.
Bill's focus on timeliness
The speech highlighted the bill's opening section, which seeks to establish national treatment for timely and effective inpatient and outpatient treatment of scoliosis and to designate hospitals and other facilities for timely detection, assessment and remedial treatment. Keogan repeatedly emphasised the word "timely" and argued the state must take greater oversight to deliver the health care citizens pay for and deserve.
Case of Jamie McGinley
Keogan recounted a Donegal mother's account about her daughter, Jamie McGinley. At 14 Jamie's condition was judged not urgent, but a year later at Crumlin Hospital she was told she risked losing lung function and needed surgery within six to eight weeks. The family travelled to Istanbul, Turkey, where Jamie received tests and surgery in days, a contrast Keogan used to illustrate acceptable timeliness.
Case of Katie Byrne
Keogan described the case of Katie Byrne from Cove in County Cork, who has cerebral palsy, a dysplastic hip and a twisted femur and risks hip arthritis, full-time wheelchair use and scoliosis without surgery. Katie has waited 14 years, five months for surgery and has been told at various times she was too weak, too young, not dysplastic enough and then too old. Her family are seeking treatment abroad and trying to raise money for surgery.
Systemic impact of waiting times
Keogan criticised a system that she said appears to prioritise simpler cases while children with complex conditions wait longer, and warned that waiting times cause permanent damage such as lung impairment or progressive disability. She framed timely treatment as both reactive and preventative and said the current delays carry enormous human costs for Irish citizens.
Direct request to the Minister
Keogan told the Minister she would send the case in relation to Katie and asked for help to avoid the family having to raise $300,000 to travel to America for treatment. She also condemned the need for families to set up fundraising pages to obtain care for their children, placing responsibility on the Minister and previous Ministers for Health.
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and the Minister, you are very welcome into the chamber this afternoon. And I too, along with my colleagues here, are delighted that this bill is progressing through this house. So I'd like to draw attention to the first section of this bill, which states that this national treatment is to be established for the timely and effective inpatient and outpatient treatment of scoliosis, and that it will designate hospitals and other facilities for the timely detection, assessment and remedial treatment of scoliosis. The emphasis here is on the word mentioned twice for good measure, timely. Over the past years, we have been treated to one horror story after another of waiting lists and their impacts on patients. Previous governments and health ministers have promised to reduce waiting lists and the numbers of people on those waiting lists. But while those promises may have been made in good faith, it is apparent that it has failed to materialise. Therefore, it is imperative that the state step in to take a greater role of oversight and to ensure that we deliver the health care our citizens pay for, the health care they deserve and the health care they need. But again, I would like to return to the word timely. Today, a mother from Donegal agreed to share her story relating to our daughter, Jamie McGinley, to highlight the shortcomings of our current system. Young Jamie has been lucky in that her family managed to find treatment for her in Turkey. Although the fact that they had been forced to due to the lack of timeliness in this health care system is shameful. The lack of timely provision of treatment in both our public and private health care sectors and the fact that this has forced a family to seek solutions abroad at great personal expense to themselves is just another example of a wrong we urgently need to right. At 14 years old, Jamie's medical check-up found her condition was not urgent or serious. However, a year later, at the age of 15, she was told in Crumlin Hospital that she would lose function of one of her lungs if she did not receive surgery as soon as possible. Her time frame for treatment was six to eight weeks. Her mother told us that given her previous experience, such as having to wait five weeks for an x-ray and having to go all the way down to Navin for it, and that given the urgency of her case, the best option was to seek treatment in Turkey. In Istanbul, Jamie was able to receive all the tests and the surgery she required in a matter of days. That is a standard of timely treatment, not the months or the years Irish citizens are expected to wait. Waiting times are causing enormous damages to real human lives. One of the consultants who spoke to Jamie's mother told her that many patients often receive permanent damage to their lungs by the time they receive their pre-surgery tests. More generally, Jamie's mother highlighted a broader issue with waiting times, which is that the current system appears to prioritise the more straightforward and simple cases, particularly cases where treatment abroad is needed. Meanwhile, children and minors who have more complicated cases and suffer from one or more conditions such as Jamie, who tragically suffer from chari malformation, in addition to scoliosis, have to wait longer for treatment as they have to wait on more tests and consultations. This despite the fact that they are very often required treatment more urgently for precisely the same reasons. As Jamie Mothers describes, the current system is one where the ones who need treatment the most wait the longest. Again, timely treatment of scoliosis is not only reactive treatment for scoliosis when it arises, it is also preventative treatment. Another young woman, whom I met today, post-testing outside these gates, Minister, agreed to share her story, was Katie Byrne from Cove in County Cork. Katie has just turned 18. She has cerebral palsy, a dysplastic hip and a twisted femur. Without surgery, she risks hip arthritis, full-time wheelchair use and scoliosis. Katie has spent 14 years, five months, waiting on surgery. Members of the House, let me just repeat that. 14 years. That's nearly her entire life that she's been waiting for surgery she needs. Katie is given the explanation as to why she cannot receive surgery. She was told she was too weak. She was told that her hip is not dysplastic enough. She was told that she is too young for surgery. Then, believe it or not, she is told she's too old for surgery. At this time, Katie is braving a pain. Her family have been forced to search for treatment abroad and are desperately seeking to raise the money for this treatment. Parents shouldn't have to set up a GoFundMe page to get treatment for their children in this country. That is down to our Minister, our Minister for Health. That is down to the previous Minister for Health. 14 years, Minister. So, members of this House, it is all well and good to talk about timeliness and numbers on waiting lists. But we must remember that the horrific delays we here have have enormous human costs and can change lives for the worse. Minister, I'm going to send you on that case in relation to Katie and please, if you could do anything for her to avoid her having to raise this $300,000 to go to America to get treatment. I would really, really appreciate it. Thank you. Thank you.
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