Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

I thank the Ceann Comhairle for giving me the opportunity to raises this issue. I do not often come into this Chamber and play emotional cards but I met a group, the Scoliosis Advocacy Network, the members of which are campaigning on behalf of their children and other children.

I will put one or two case studies on the record. I have given the individuals pseudonyms to protect their identities. Mary was diagnosed at age ten in May 2013 with a 40° spinal curve at Mullingar General Hospital. She was referred to Our Lady's Children's Hospital Crumlin for urgent review by a specialist. She was obliged to wait 11 months before she could see a consultant. Her mother rang the hospital daily in order to secure this appointment. During this 11-month wait, Mary's curve deteriorated from 40° to 90°. She now required urgent surgery to halt the progress of her spinal curve. In fact, she now required two significantly invasive surgeries and would need some of her ribs removed. This was due to the long wait and the deterioration in her condition. She finally made to theatre 17 months after her diagnosis for her first surgery and her curve was well over 100°. One week later, she had her second surgery. Her body suffered severe trauma during these surgeries and she spent one month in hospital in Crumlin. During the 17-month wait, Mary had to give up sports, was in constant pain and unable to eat and her back became more deformed. Unfortunately, Mary now finds herself back on a waiting list for surgery to correct a failed fusion and there is no date in sight for this procedure. Once again, her condition is being allowed to deteriorate.

A second child, I call him Dónal, was diagnosed with scoliosis aged two and had a 35° double curve. He had two separate medical interventions over the years to prevent his spinal curve becoming worse. These did not work. In August 2015, Dónal was placed on the urgent surgery waiting list. Dónal's parents were told he needed surgery and the sooner the better. Dónal's curve was approximately 60° when he was placed on the surgery waiting list in August 2015. Dónal has been waiting 15 months for his urgent surgery, with no date in sight. His curve is now approximately 80°, with added rotational problems. Dónal is seven years old. He has reduced lung capacity due to his scoliosis. He has reduced endurance and is not growing as he should be. He has to go to bed after school most days. His mother told me yesterday that he can no longer retain his food due to the pressure on his stomach.

Another child to whom I give the pseudonym Ted was born with scoliosis. He has had a number of surgeries to date, with long wait times and cancellations along the way. He had vertical expandable prosthetic titanium rib, VEPTR, surgery to treat his scoliosis and, unfortunately, that failed. He waited many months with an unhooked rod before he could again gain access to the theatre. The rod dislodged from his shoulder blade and from his hip and it was months before that was even addressed. During this waiting period, Ted suffered pain on a daily basis. He needed strong pain medication to help him cope. Ted missed lots of time in school and needed home tuition. Ted has poor endurance and requires a wheelchair for days when he cannot be mobile as a result of the pain and the tiredness. Ted is six years old now and will require ongoing surgeries throughout his entire childhood. Due to the 100% complication rate with growing rods, this means that revision surgeries are guaranteed for Ted.

He will spend most of his childhood on a waiting list for surgery to treat his scoliosis.

I could continue speaking on this. I have five cases with me and I have analysed most of them. After listening to the parents I urge that something be done, dramatically and quickly. This simply cannot be allowed to continue for these five cases or for the other 203 cases currently on the waiting list.

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