Sharon Keogan (Independent) | Oireachtas source

I welcome the Minister to the Chamber. Along with my colleagues, I too am delighted this Bill is progressing through this House. I draw attention to the first section that states this national treatment service 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 "timely", which is mentioned twice for good measure. Over recent years, we have been treated to one horror story after another of waiting lists and their impacts on patients. Previous Governments and Ministers for health have promised to reduce waiting lists and the numbers of people on them. While those promises may have been made in good faith, it is apparent, however, that they have failed to materialise. It is imperative, therefore, that the State steps in to take a greater role in oversight and ensure we deliver the healthcare our citizens pay for, deserve and need.

I return to the word "timely". Today, a mother from County Donegal agreed to share her story relating to her 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 Türkiye, although the fact they had been forced to do so due to the lack of timeliness in this healthcare system is shameful. The lack of timely provision of treatment in both our public and private healthcare sectors and the fact 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 checkup found her condition was not urgent or serious. A year later, however, at the age of 15, she was told in Crumlin hospital she would lose function in one of her lungs if she did not receive surgery as soon as possible. Her timeframe for treatment was six to eight weeks. Her mother told us that, given her previous experience, such as having had to wait five weeks for an X-ray and having to go all the way down to Navan for it, and given the urgency of her case, the best option was to seek treatment in Türkiye.

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 years Irish citizens are expected to wait. Waiting times are causing enormous damage to real human lives. One of the consultants who spoke to Jamie's mother told her 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, especially those 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 suffers from Chiari malformation in addition to scoliosis, have to wait longer for treatment because they must wait on more tests and consultations. This is despite the fact they very often require treatment more urgently for precisely the same reasons.

As Jamie's mother describes it, 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 protesting outside these gates, agreed to share her story. She is Katie Byrne from Cobh 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 and five months waiting for surgery. Let me just repeat that for the Members of the House. She has spent 14 years waiting. That is nearly her entire life she has been waiting for the surgery she needs.The explanation given to Katie as to why she cannot receive surgery is that she is too weak. She has been told her hip is not dysplastic enough and that she is too young for surgery. Then, believe it or not, she was told she is too old for surgery.

At this time, Katie is braving the pain. Her family have been forced to search for treatment abroad and are desperately seeking to raise the money for this treatment. Parents should not have to set up a GoFundMe page to get treatment for their children. That is down to our Minister for Health and the previous Minister for Health. It has been 14 years. It is all well and good to talk about timeliness and numbers on waiting lists, but we must remember that the horrific delays we hear about have enormous human cost and can change lives for the worse.

I am going to send the Minister the details of Katie's case. If she can do anything to avoid her having to raise €300,000 to go to America to get treatment, I would really appreciate it.