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'They spend their childhoods on waiting lists': The painful reality for children with scoliosis

Two mothers talk to us about their fight to get treatment for their sons.

20150509_143129 Tommy Source: Michelle Long

SCOLIOSIS AFFECTS ABOUT 1% of children and adolescents in Ireland.

As of 31 July, there were 153 patients aged 18 or under with scoliosis waiting for a procedure in hospitals in Ireland, including 132 at Our Lady’s Children’s Hospital, Crumlin, and 14 at the Children’s University Hospital, Temple Street.

Of this, 20 patients had been waiting for more than 15 months, 18 had been waiting for between 12-15 months, 45 for six to 12 months, 45 for three to six months, and 25 for three months or less.

Scoliosis 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.

The HSE’s recently-launched Winter Initiative Plan includes €2 million to be spent on providing surgery to treat 39 adolescent patients on the Tallaght waiting list and an additional 15-20 paediatric patients by the end of this year.

Michelle Long and Claire Cahill founded the Scoliosis Advocacy Network to provide support for parents of children who have the condition, and to lobby the Government.

Both women have sons with scoliosis.

Michelle’s six-year-old son Tommy has had numerous surgeries. He had a vector rod inserted in September 2014, followed by a couple of lengthening sessions. Issues with the rod developed and he was waiting seven months for these to be fixed. A magnetic rod known as a magec rod was inserted in January of this year.

Michelle says she fears this rod has come unhooked as it’s “bulging out”.

“It was due to be taken out next summer so a bigger rod could be inserted … but this could be delayed.

Children are not getting treatment that is clinically best, it’s based on resources.

Tommy had spine curvature of over 100 degrees. Michelle doesn’t have the exact number now, but believes it’s at about 60 degrees.

Due to Tommy’s age the main issue they focus on is chest measurement rather than curve. Before surgery he was at risk of respiratory lung disease on his left side.

In this regard, Tommy is “past the danger zone now, thankfully”. He will need several more surgeries, however.

20150617_153401 Tommy Source: Michelle Long

“When children are under 10 it’s not one operation and done, it’s numerous operations because they’re growing,” Michelle notes, adding that teenagers can receive a spinal fusion once they stop growing.

Tommy uses a wheelchair part-time as he has endurance issues. “He gets tired very easily,” Michelle tells us.

He has a Special Needs Assistant (SNA) at school and his balance and breathing are affected.

“He’s just so used to it, he was born with it so he doesn’t know any different.”

Despite all this, Michelle says Tommy is one of the lucky ones as he’s already in the system.

If Tommy had not received treatment he would not have been with us beyond his teens.

Michelle notes there is a 130% rate of complication with the type of surgery he underwent, meaning children who have the rods inserted place additional demands on the resources outside of the official waiting list figures as they often need corrections.

“Tommy will take time from a child waiting to start the process,” she says.

20160825_140440-1 X-ray of Tommy's back after magec rod was inserted Source: Michelle Long

At a meeting with other parents last week, Michelle was speaking to a woman whose 14-year-old daughter initially had a 45 degree curve. However, she has been waiting 15 months for surgery and this has now developed to a 90 degree curve.

Michelle says parents are often told by doctors surgery could lead to a 50% correction (this could be higher or lower) of spinal curvature.

“In this girl’s case that could have meant the curve was negligible but now, when she gets surgery, she might only be back to where she started.”

Michelle says many doctors are “only dealing with crises”, noting: “You nearly need to have a respiratory issue to get seen.”

Beyond lung and stomach issues, Michelle notes there are also mental health implications for children with the condition, especially among teenagers.

‘They spend their childhoods on waiting lists’

Claire’s son Darragh was diagnosed with infantile scoliosis at the age of two-and-a-half. He is now seven years old.

He has undergone body casting and spinal bracing, but that has not stopped the progression of his condition. Claire estimates his curve is now at least 75 degrees.

Darragh has been on a waiting list for magec rod surgery for 13 months.

IMG_4090 Darragh Source: Claire Cahill

“If we go for long walks or family days out, I have to carry him or put him in a buggy. He’s seven now, that’s not nice on him either,” Claire explains.

Darragh is also underweight for his age, has decreased lung capacity and gets regular pains in his legs and elsewhere.

Claire praises Darragh’s school, where he has a “special seat and table”.

“Everyone at school is so supportive of him, they are working in between his limits,” she says.

The main issue is that scoliosis is a progressive condition. There is no benefit to allowing my son’s curve to get bigger. Financially it costs more for the HSE to treat a child when they have a larger curve.

Claire also welcomes the HSE’s winter initiative, saying: “Even if Darragh is not treated this year, anything that takes a child off a waiting list is a good thing.”

However, she adds this is “crisis intervention, not a long-term solution”.

“If and when he has surgery basically he’ll be like Tommy, again waiting for more surgery. They really spend their childhoods on waiting lists.”

IMG_9965 Darragh Source: Claire Cahill

Claire says her family was promised Darragh’s surgery would take place in spring of this year, then summer.

He had his pre-op assessment done, a spinal MRI and x-ray, cardiology and physio. An SNA had been arranged to help him in school this month.

The family was told in July his surgery is unlikely to take place this year.

“Parents shouldn’t have to fight for services … There are plenty more children, not just my child. Children are falling through the cracks,” she says, noting it can take up to two years from a GP’s diagnosis for a child to get their first assessment with a specialist.

Meetings with ministers

The Scoliosis Advocacy Network met with Leo Varadkar when he was the Health Minister and are due to meet his successor Simon Harris on Monday.

A new orthopaedic theatre was due to be opened in Crumlin in May, but this hasn’t happened yet.

In a statement to TheJournal.ie, the Children’s Hospital Group, which comprises Temple Street Hospital, Our Lady’s Children’s Hospital in Crumlin and the National Children’s Hospital, Tallaght, said:

Construction on a new orthopaedic theatre at Our Lady’s Children’s Hospital Crumlin was completed in June 2016. It is expected that additional orthopaedic theatre sessions will commence after staff are recruited. Specific campaigns for nurse recruitment are across the three children’s hospitals.

The statement added that the new theatre is expected to be opened before the end of the year.

IMG_1700 Darragh Source: Claire Cahill

When the HSE’s plan was announced during the week, Harris said he was “adamant that the specific measures to address scoliosis waiting lists for adolescents and children be delivered”, adding:

Timely procedures for these children is critical to give them the best possible chance to grow up with a good quality of life.

Michelle says the HSE’s winter plan is to be welcomed, but it’s only a temporary measure.

She says it’ll be great if 39 adolescent patients and 15-20 paediatric patients receive treatment by the end of the year as planned, but noted there are only three months left for this to happen.

“We’re watching to see what will happen. It’s only a stop gap, we do need a longer term solution. [Scoliosis waiting lists] reached crisis point before, they threw a few million at it, but didn’t have a long-term plan,” she says, adding it’s likely “we’ll be back in same scenario in 2017″.

‘Bursting at the seams’

The HSE plan also wants to eliminate adolescent waiting lists at Tallaght, noting the expectation is “this will not recur as paediatric service [is] transferring to Crumlin”.

Michelle is cautious about this, noting: “Crumlin is bursting at the seams, it’s beyond bursting at the seams.”

.   Minister for Health, M Simon Harris Source: Sam Boal/RollingNews.ie

Speaking in the Dáil in July, Harris said: “The management of scoliosis is complex and is determined by the severity of the curvature and skeletal maturity.”

Harris noted there are “particular service pressures in Our Lady’s Children’s Hospital Crumlin, which is the largest provider of scoliosis surgery for children and young people”.

“In order to address these pressures, additional funding of €1.042 million was allocated under the 2015 Service Plan to increase capacity, and an additional orthopaedic surgeon, anaesthetist, and support staff are now in place with recruitment of a further additional orthopaedic surgeon underway.

Capital funding was also provided for a new theatre on site to expand theatre capacity further, and this is currently being commissioned. The Children’s Hospital Group is proactively working on nurse recruitment to support the opening of the new theatre.

Harris added that “significant external capacity for patients awaiting scoliosis procedures” at Crumlin was sourced in 2015, and 66 patients have been treated in other hospitals including the Blackrock Clinic and the Royal National Orthopaedic Hospital in Stanmore in England.

“Further potential for external capacity to address waiting times is being examined. My department will continue to work with the HSE and the relevant hospitals to ensure all options to improve access are explored,” Harris said.

Michelle says, while the winter initiative steps are welcome, parents “want a three to five-year plan, like any good business”, noting: “There’s only a temporary plan at present. Our children are entitled to adequate and timely care.”

“All our children are incredibly brave and resilient in their battle with scoliosis. They shouldn’t have to battle with the HSE for services.”

More information on the Scoliosis Advocacy Network can be read here.

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

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Órla Ryan

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