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'I see my daughter crying in pain, her body bending over. We can't wait two years'

Sarah-Ann, aged 11, has scoliosis and is “waiting to get on a waiting list”.

First published 20 January 2017

In light of the recent revelations about waiting lists for scoliosis surgery in Ireland, we are re-visiting this interview with Karen and Sarah-Ann Cline. Sarah Ann, who is 11, has scoliosis and has been ‘waiting to get on a waiting list’ for treatment, her mother told us. 

In September 2016, we spoke to the families of children who are in urgent need of scoliosis surgery, while in November of last year we looked at what life is like on the waiting list for scoliosis treatment. In December 2016, a woman who had live-saving scoliosis surgery spoke to us about her frustration over waiting lists.

FullSizeRender_resized Sarah-Ann Source: Karen Clyne

IT WAS THE way she was sitting.

“She normally sits poker straight, but I noticed one day that she was kind of bent over.”

Karen Clyne hadn’t spotted anything different about her daughter Sarah-Ann before that day last July.

When she examined her back she noticed a curve. 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.

At this stage, her curve was 50 degrees.

Karen says Sarah-Ann, at 11, is now old enough to shower herself, and she hadn’t noticed any issues with her daughter’s back under her clothes.

“I felt so guilty. The doctor said I couldn’t have known, but I couldn’t stop crying.”

Karen’s second daughter, Keeva, is nine. “I’m so paranoid about her now, I’m checking her every day,” Karen says.

20170116_211601_resized Sarah-Ann Source: Karen Clyne

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.

Scoliosis Spine Source: Scoliosis ireland

Going private

After waiting months for an appointment with a specialist through the public system, Karen paid to get an appointment with a consultant privately. That was on 7 December.

At this stage, Sarah-Ann’s curve had progressed to 60 degrees.

Karen says she got a call the week before we spoke to organise an MRI scan. Once this is done, Sarah-Ann will get an appointment for spinal assessment.

Karen says other children are in the same situation – waiting to get on a waiting list. She says Sarah-Ann is deteriorating rapidly.

I see my daughter daily, weekly, monthly, progressively getting worse, crying in pain, her body bending over. Unless she is admitted for spinal surgery soon she will deteriorate at an alarming rate going by the evidence of the X-rays.

“I’m really worried. If we’ve to wait another two years for surgery my child could end up with a diseased liver and other health issues. That’s my main concern at the minute.”

Psychological damage 

Karen is also concerned about the psychological damage that’s being done to Sarah-Ann as other children in school have started to tease her.

She has to sit on a special chair and she has to get a special table now too. Some of the other children have started to tease her, they say things like ‘Don’t get your spine in a twist’. They don’t understand the damage that’s doing to her. It’s hard enough at the that age, at 11, coming into adolescence.

As of 31 December, 236 patients aged 18 or under were waiting for spinal procedures in hospitals in Ireland, including 194 at Our Lady’s Children’s Hospital, Crumlin (OLCHC), and 30 at Temple Street Children’s University Hospital.

Of this, five patients had been waiting for more than 18 months, 12 had been waiting for between 15-18 months, 28 for 12-15 months, 71 for six-12 months, 58 for three to six months, and 62 for three months or less.

20170119_Spinal_OP (2)

Spinal procedures include:

  • Application of halo traction (head brace)
  • Insertion of growing rods
  • Application of casts
  • Scoliosis assessments
  • Spinal fusion

‘Constantly in pain’

Karen says she’s very frustrated by how long some children have to wait for surgery.

I’m horrified, as a mother it’s not nice to not be able to do anything to help your child when they’re in pain. If I had all the money in the world I still couldn’t do anything.

“The surgeon told me, ‘It doesn’t matter if you’re a millionaire or a pauper, if you’re under 14 you’re on public waiting list and you just have to wait’.

“As a parent I just want to fix this for my child, but I can’t.

“It was her birthday [recently], I got her a new coat and when I put it on her you could see her spine protruding through it.

“I used to bring her to the swimming pool as that was supposed to help, but now that her curve is worse she’s paranoid about it and won’t go anymore.

“This is having a knock-on effect on her mental health. She’s constantly in pain.”

New theatre

The opening of a new orthopaedic theatre at OLCHC has been pushed back on a number of occasions due to difficulty recruiting staff. Construction on the theatre was completed in June 2016.

In a statement, a spokesperson for OLCHC told us the hospital commenced using this theatre in November 2016 “to enable training with new equipment and also to facilitate spinal surgery in the most up-to-date environment”.

“An additional spinal orthopaedic surgeon has been recruited. Recruitment of nursing staff continues and until all staff are in place this theatre will not provide additional capacity.”

The statement said the hospital is working with the Children’s Hospital Group and Health Service Executive (HSE) on international recruitment drives.

“Two additional orthopaedic surgeon consultant posts were advertised and one consultant surgeon post has been filled. OLCHC is currently progressing recruitment of the second orthopaedic surgeon post. There has been no change to theatre capacity at OLCHC.

“The new orthopaedic theatre is the only theatre dealing with scoliosis surgeries in the hospital. There were 54 new scoliosis patients that had surgery in 2016.

“The hospital also had the opportunity to outsource 24 patients to the private sector, under HSE Winter Initiative funding.

The hospital chose to open this theatre recently to train staff with the new high tech equipment and to carry out a range of orthopaedic surgeries including spinal cases. This did not mean an increase in theatre capacity or an extra theatre opening.

“No additional theatre sessions have commenced at OLCHC. This will be dependent on the recruitment of specialised theatre trained staff which is ongoing.

“Our Lady’s Children’s Hospital, Crumlin, together with the Children’s Hospital Group, HSE and the Department of Health, continue to prioritise investment in orthopaedics.”

download Tommy and Darragh, who both have scoliosis, at their meeting with Health Minister Simon Harris in 2016 Source: Claire Cahill

Speaking in the Dáil during the week, Health Minister Simon Harris said: “Long waiting times for scoliosis surgery are not acceptable, and my department has been working closely with the HSE to address services pressures, particularly in Our Lady’s Children’s Hospital Crumlin, which is the largest provider of scoliosis surgery for children and young people.

“Additional funding of €1.042 million was allocated under the 2015 Service Plan to increase capacity at OLCHC, and an additional orthopaedic surgeon, anaesthetist, and support staff, are now in place with recruitment of a further additional orthopaedic surgeon under way.

The HSE Winter Initiative 2016-2017, published on 9 September, also includes €2 million provided specifically for scoliosis patients. 78 scoliosis patients were reviewed under this initiative. To date, 54 have been treated and four have received appointments for treatment in February, due to clinical age restrictions for procedures.

“I recently met with a number of scoliosis advocacy groups to discuss their concerns and my department will continue to work with the HSE and the relevant hospitals to ensure improvements in access to spinal surgery.”

One of the groups Harris has met with is Scoliosis Advocacy Network, which is calling for an independent review of scoliosis services in Ireland.

TheJournal.ie previously spoke to the two mothers who set up the group, Michelle Long and Claire Cahill, about how long their sons Tommy and Darragh have waited for treatment.

Note: A previous version of this article said construction on the new theatre in OLCHC was completed in June 2015, not June 2016 – this was based on incorrect information given to TheJournal.ie by the Children’s Hospital Group. 

Read: ‘This is a huge scandal’: Children with scoliosis deteriorating as waiting lists worsen

Read: ‘I fear it’s going to take a child to die before they act’

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About the author:

Órla Ryan

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