A MOTHER AND her 12-year-old daughter who suffers with scoliosis shed tears in the minister for health’s office yesterday as they asked when she would be able to have her life-changing operation.
Karen Cline-Mitchell told TheJournal.ie that her daughter is living in limbo and extreme pain as she waits on a date.
Her daughter, Sarah-Ann Cline-Mitchell has a 60 degree curve in her spine and has been on a waiting list for treatment for over nine months.
Yesterday, Karen and Sarah-Ann were invited to meet with the minister to discuss her case, but they said they left “with no new answers” or clarity as to when she will get treatment.
“She sat in front of the minister and told him that she hates when people call her names and asked when she would get her operation, but we left there knowing nothing new. It’s just so frustrating,” said Karen.
Severe curvature
When Karen first spotted a curve in her daughter’s back, she brought Sarah-Ann to Our Lady’s Children’s Hospital, Crumlin (OLCHC), where she was diagnosed with thoracic scoliosis – meaning the upper part of her spine is curved.
Scoliosis affects about 1% of children and adolescents in Ireland. The condition can also affect adults. It causes an abnormal curve of the spine or backbone.
Scoliosis Ireland notes the curve can bend to the left or to the right and can be in the lower part of the spine (a lumbar curve), the upper part of the spine (a thoracic curve), or go from the upper to lower part of the spine (a thoracolumbar curve). In some cases there is a double curve – like an S shape.
After waiting months for an appointment with a specialist through the public system, Karen paid to get an appointment with a consultant privately. At this stage, Sarah-Ann’s curve had progressed to 60 degrees.
Sarah-Ann has since been referred from Crumlin Hospital to Cappagh National Orthopaedic Hospital in Finglas for treatment – but Karen said that “yet again, there is miscommunication”.
Waiting on a date
When Sarah-Ann, and some 40 other patients, were moved from the public waiting list to Cappagh Hospital, Karen thought they would be given a date for their operation.
However, since then, the concerned mother said there is utter confusion and now differing opinions between doctors about her daughter’s treatment.
“We’d been told it could be fixed and that the operation could happen soon, only for us to be told the opposite.”
Karen claims she was told Sarah-Ann’s rib cage may be unfixable and that she could be partially deformed forever.
Her daughter was understandably very upset about the news. However, then another doctor said it may be fixable.
After waiting for months for treatment, Karen said they have now been told Sarah-Ann may have to wait a further nine months.
A further nine months
“There is no way I want to wait another nine months for treatment. She could be deformed at that rate,” she said.
“I don’t want my daughter to grow up with a deformity,” she said, adding that she sought a commitment from the Simon Harris yesterday that if her daughter must wait for treatment, an appropriate monitoring system should be put in place to ensure that Sarah-Ann’s spine does not deteriorate.
It is not just Sarah-Ann’s spine Karen is worried about. She is also worried about the level of pain medication her young daughter is taking and what damage it could be doing to her liver.
As Sarah-Ann’s condition worsens it will begin to strain on her lungs and heart, said Karen, who added she is also concerned about her daughter’s mental health.
During yesterday’s meeting, Sarah-Ann and Karen pressed the minister to initiate an early screening programme for scoliosis.
“I tried to make the case that early detection is key,” said Karen.
Such a programme would allow early diagnosis which would then mean that treatment could be less invasive and would save years of pain and suffering for many children.It really is soul-destroying to see my daughter crying every day with the pain in her back. We just want this to be sorted out once and for all.
Solidarity-PBP TD Richard Boyd Barrett, who attended the meeting with the minister yesterday said, the idea that Sarah-Ann may have to wait a further nine months for treatment has her mother “in bits”.
He said the minister committed to look into what is causing the delay with Sarah-Ann’s treatment, as well as determine what hospital and consultant is in charge of her care.
A spokesperson for the minister said a number of assurances were given by the minister in yesterday’s meeting, describing it as positive.
Last month, Harris committed to drawing up a new HSE action plan on scoliosis. While the plan is yet to be published, Harris also said a review into whether it is feasible to re-introduce the scoliosis screening programme is underway in the Department of Health.
With reporting by Orla Ryan
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