Contacts between scoliosis patients and clinical staff will be managed differently after an Ombudsman for Children report revealed how a teenage girl was unable to breathe at times after waiting five years for spinal surgery.
In late June, a report by the ombudsman’s office found that the girl with cerebral palsy was forced to wait five years for spinal fusion surgery. During that time, her spinal curvature deteriorated from 30 to more than 135 degrees, the report found.
The report found that Children’s Health Ireland (CHI) failed to communicate appropriately with the girl and her family and that the CHI at Temple Street hospital also failed to properly address a complaint made by the girl’s father about her care. The report made seven recommendations to address these concerns.
‘Relevant actions’
In an update on those seven recommendations sent this week to Sinn Féin health spokesman David Cullinane, the HSE and Children’s Health Ireland said that “most of the relevant actions” are completed or nearly complete.
They said that clinical nurse specialists and medical secretaries are to be given “clear written guidance on escalations processes if waiting list concerns are raised with them”, which would include a parent or patient flagging a clinical deterioration.
The CHI is establishing a “formal process for capturing contacts between clinical team members and families as they occur. This formal record will include details on the nature of any queries, responses provided and actions undertaken. At six monthly intervals these records will be cross-checked with the waiting list for spinal fusion. Any families which have not made contact during this period will undergo validation at that point.”
Mr Cullinane was told that the new process will “also assist in ensuring that there is effective and timely response to any deterioration experienced by children waiting for treatment”.
The HSE and CHI also said that patient information materials will also be developed to “enhance awareness on points of contact” and to advise on what steps can be taken if a parent is concerned about their child’s condition.
There has also been a “substantial restructure of the complaints management team and processes”.
Sinn Féin reaction
Mr Cullinane said he welcomed the update on the implementation of the report’s recommendations. “The Ombudsman for Children made very clear recommendations which need to be implemented in full. These include recommendations on better engagement with families and specifically with the family of [this] child … I welcome progress in these areas. However, a lot more needs to be done to increase capacity and reduce wait times. This is the crucial area which needs greater delivery.”
Mr Cullinane was also told that an expert review into spinal surgeries will likely be completed by the end of this September. The external clinical review of all complex surgeries over the past three years on children with spina bifida has been commissioned from experts from Boston Children’s Hospital.
The 17-year-old, referred to in the ombudsmam’s report, told investigators about the enormous toll caused by the uncertainty around her surgery, both physical and mental. She could not meet her friends, go to school “or even breathe at times” as the curvature worsened.
When she eventually had surgery in 2021, her pain reduced significantly and her quality of life improved.
The report found the administrative actions of CHI had a negative impact on the teenager’s life and made seven recommendations to address these concerns, including an audit of the waiting list for children’s scoliosis care and a change to allow for a patient or their family or GP to initiate a review of their own care.
