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'Children are eating paracetamol to get through the day, afraid of ending up in a wheelchair'

No child should have to wait longer than four months to receive necessary scoliosis surgery, according to a new report.

NO CHILD IN Ireland should have to wait longer than four months to receive necessary scoliosis surgery, a new report has stated.

Waiting on scoliosis treatment: A children’s rights issue was launched by the Ombudsman for Children’s Office in Dublin today.

The government has committed to an average waiting time of four months for children who need surgery. International best practice is three to six months.

IMG_20170320_114620 Dr Niall Muldoon Source: Órla Ryan/TheJournal.ie

Speaking at the launch today, Ombudsman for Children Dr Niall Muldoon said: “Every child in Ireland has a right to the highest attainable standard of health. At present that right is not being respected for children and young people with scoliosis and crisis managing has not resolved the issue.

“Due to their age and stage of development, young people with scoliosis are suffering severe physical and psychological effects as a result of the delays they experience. This should not be acceptable in Ireland 2017.”

Speaking to TheJournal.ie at the launch, Muldoon said he believes the four-month waiting time target is ambitious but can be done.

“I do think it’s ambitious but hopefully [the government] will provide themselves with the proper resources and funding for it.

Where we’ve failed before is that we’ve oftentimes put in just the money and didn’t follow up with staffing, with administration, with governance, with what makes it sustainable, and that’s what I’m pushing for today.

“We’re hopefully getting to the stage where we have that target of four months for all children, but also making sure it’s sustainable for 2019, 2020, 2021 – so we don’t get to this crisis again.”

Muldoon adds that the difference in being treated at four months versus 18 months is “huge - psychologically and physically”.

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.

ntpf Source: NTPF

As of the end of January, the latest figures available, there were over 200 patients under the age of 18 waiting for scoliosis surgery in Ireland, including 190 people at Our Lady’s Children’s Hospital, Crumlin (OLCHC) – some of whom have been waiting for over 18 months.

A new orthopaedic theatre is set to open at OLCHC one day a week from next month, with additional capacity being provided once extra staff are recruited in the coming months.

‘I hated being in public’

Jenna O’Brien, a 15-year-old from Limerick, had scoliosis surgery in March 2015. She had to wait 18 months for surgery, by which time the curve in her back had progressed to 108 degrees.

Before the surgery I was in a lot of pain and I didn’t like to leave the house and I didn’t like to wear tight clothes or even look at myself – it was a bit like being trapped in my own head and body.

“I hated being in public because I thought everyone could see [the curve]. I don’t think everyone could, but in my head they could.”

IMG_20170320_120007 Jenna Source: Órla Ryan/TheJournal.ie

Jenna said surgery has changed her life and she can now focus on doing her Junior Cert.

“It’s great. I have no pain whereas before I had a lot of pain all the time [before the surgery]. I’m going out, I’m in school all the time, I’m with my friends, I’m just like a normal teenager.”

Jenna said she’s one of the lucky ones who have received surgery and all children and young people with scoliosis deserve the same chance.

“They shouldn’t have to wait that long for surgery that will change their life. They shouldn’t feel like they have to stay inside or avoid the clothes they want to wear, or going outside or anything like that. They should be allowed to be normal teenagers,” she told TheJournal.ie.

Muldoon stressed the importance of young people like Jenna, and others mentioned in the report, speaking out.

It gives a real flavour of what it’s like for those children, the pain that they talk about – one of them talks about having to eat paracetamol to get through the day at school, missing school, the fear of missing the Leaving Cert, the fear of being put in a wheelchair, the unknowns, the body image questions, not being able to wear the clothes they want to wear, not being able to go out with their friends, all those things, the isolation.

“There are things that they say that I couldn’t express,” Muldoon said.

Child-friendly healthcare 

Dr Aoife Daly, Senior Lecturer in Law at the University of Liverpool, also spoke at the launch.

“Our international human rights obligations mean that the State must take into account children’s best interests as a primary consideration when weighing up competing budget allocation and spending priorities.

“Children are a vulnerable group with no vote and little influence. Implementing the recommendations in this report, such as a national policy framework on child-friendly healthcare would go a long way to tackling the problems in question,” Daly said.

‘Significant improvements needed’

Health Minister Simon Harris said today’s report “rightly highlights the need for significant improvements to be achieved in terms of waiting times for scoliosis procedures for children and teenagers in Ireland”.

This absolutely is a priority for me, for the government and for the HSE this year. I welcome the fact that the HSE has committed that no child will wait longer than four months for such a procedure by the end of the year. This would bring Ireland in line with waiting times in the NHS in the UK.

“A range of measures will be used to get to this target including additional theatre capacity in Crumlin from April.”

The HSE also welcomed the publication of the report. A statement noted: “Significant investment has been provided in recent years to specifically address the improvements required in managing waiting lists and times for children and adolescents requiring scoliosis surgery.

“In the last two years Our Lady’s Children’s Hospital, Crumlin was allocated over €2 million in additional resources for scoliosis and orthopaedic service developments. A further €5 million of capital funding was provided to develop a new laminar flow orthopaedic theatre.

“There were difficulties in recruiting nursing staff for this additional theatre during 2015/2016 and OLCHC utilised service development funding to outsource patients with scoliosis for their surgery…

Additional orthopaedic theatre capacity for scoliosis treatments in Our Lady’s Children’s Hospital, Crumlin will commence in April 2017. Pending continued successful theatre nurse recruitment, further additional theatre capacity will be in place by July 2017. An additional orthopaedic surgeon will be in place at the hospital by June 2017 to assist with waiting lists for orthopaedics.

“The ultimate requirement is to develop sufficient capacity across the Children’s Hospital Group and Cappagh Hospital to meet the paediatric surgery requirements for paediatric scoliosis treatments within a four-month waiting target and the planned transition of adolescents/young adults to the Mater Hospital adult spinal unit for their continued treatment as young adults.”

Read: ‘I see my daughter crying in pain, her body bending over. We can’t wait two years’

Read: We used to screen for scoliosis in schools, so why was it stopped?

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