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'The damage is done, a piece of his spine will have to be removed'

Tommy Long is one of over 200 children waiting for scoliosis surgery in Ireland.

download (6) Tommy Long (6), who has been waiting for six months to have a rod re-inserted in his back Source: Michelle Long

WAITING TIMES FOR children with scoliosis have been making headlines in recent months.

It’s a familiar scenario: concerns are raised and resources are diverted to help deal with the issue.

Many interested parties believe this type of action may help in the short-term, but doesn’t stop us ending up back at the same juncture in the not too distant future.

Speaking at the launch of his office’s report on scoliosis waiting times this week, Ombudsman for Children Dr Niall Muldoon described this process as a “vicious cycle” that must be tackled.

The report recommends that no child should have to wait longer than four months to receive necessary scoliosis surgery.

The government has committed that, by the end of the year, the average waiting time will be four months. International best practice is three to six months.

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.

download (5) Source: National Treatment Purchase Fund (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.

With scoliosis, a person’s curvature progresses over time and waiting a long period for surgery often leads to other complications and means the patient can require more serious surgery.

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.

Construction on the theatre was completed in June of last year but its opening has been delayed due to difficulties recruiting staff.

Private access to scoliosis surgery is not available in Ireland to children under the age of 14 but, in a bid to deal with long waiting lists, some children have had their treatment outsourced to the private sector or been treated in the UK.

Tommy’s story

IMG_20170320_120618 Michelle and Tommy Source: Órla Ryan/TheJournal.ie

One person listening intently at the report’s launch this week was Michelle Long from Co Kilkenny.

She co-founded the Scoliosis Advocacy Network (SAN) with Claire Cahill to provide support for parents of children who have the condition, and to lobby the government. Both their sons have scoliosis. TheJournal.ie has been following their stories in recent months.

Michelle’s six-year-old son Tommy has been waiting for his latest surgery for six months.

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 2016.

download (1) X-ray of Tommy's back after magec rod was inserted Source: Michelle Long

In September 2016, the rod became unhooked and cut through his bone. It was removed.

Michelle says she was told the rod would be re-inserted within three weeks. The operation has been repeatedly delayed, but the family has now received a date in April for surgery.

Michelle says this is a huge relief as Tommy’s condition has worsened in recent months.

It’s a relief to have the date but it’s taken far too long, but we are where we are now, you know – the damage of the wait is done. We just need the surgery to go ahead, to get him back on track.

“He’s very bent over, he has very sore legs, he’s tired and has a lot of issues with his tummy. He needs the surgery, that’s the bottom line.”

download (2) Tommy's back Source: Michelle Long

Michelle says two surgeons will carry out the procedure next month, something she thinks is because of complications caused by the delay.

Because of the deterioration, there’s an added element – they’re doing a hemivertebra excision, so they’ll remove a piece of his spine before placing the rod in. They just feel it’s safer at this point to do it with two surgeons.

“All I can say is, in September, when the rod was taken out, a rod was supposed to be put back in three weeks later and there was no mention of an excision. That came along in January when he was reviewed, they said he had progressed.”

Michelle has welcomed the opening of the new theatre in OLCHC, but warns that more must be done.

“The theatre will be open in April just one day a week, this isn’t being widely said. By July, it’ll be open three days a week. It still won’t be at capacity, but of course anything will be a benefit for the children.

“And the important thing is that when the theatre opens is that the old theatre [in the same hospital] remains open so it’s not a one for one.”

0220 Ombudsman for Children Scoliosis report copy Tommy at the launch Source: Sasko Lazarov/RollingNews.ie

Michelle is unsure if the four-month average waiting time will be achieved  by the end of 2017.

“I would love to say it [is realistic], but I am very doubtful of it. I think they will certainly get through a huge amount this year.

The biggest challenge will be to ensure that next year we’re not back here saying the same thing again. It needs a plan for the future, it needs – like the Ombudsman’s report says – a three to six-month average wait, that needs to be set in stone, that needs to be adhered to, not just firefighting – take 100 kids off the list and next year we’re back to the same scenario.

“Of course, as parents, we’re happy when any children get done, but we do need promises that this is going to be future-proofed. So do five -year plans, do 10-year plans.”

Could Ireland lead the way on scoliosis treatment? 

Dr Patrick Kiely, a paediatric orthopaedic surgeon at OLCHC, is hopeful the four-month goal will become a reality.

He told TheJournal.ie: “It’s a dream. It would be a dream come true for us because we’d know then what we’re planning to do, we’d be able to deliver.

“If everyone got working together and we got extra capacity from wherever we can get it to do the work and do it successfully then I think we could really make a huge breakthrough, but it’s not going to be easy.

“That’s a lot of surgery, that’s probably 150 extra cases [a year] because the backlog has built up. But we’ve shown that when we got resources put into it we were able to do a lot of extra work.

In the last two years, all credit to the government and the HSE, they’ve put a lot of energy and effort and resources into trying to get this sorted out and we got a lot of extra work done, some of it in other centres, but of course some of these kids really shouldn’t go to other centres, they really should be dealt with in the children’s hospital setting.

“The next step of this is to build up the capacity in the children’s hospital and the new theatre that’s built.

“If we’re closing one theatre to open another, that’s a false economy so to get it fully up and running is going to take some time, to get it fully staffed.”

Kiely says it is hoped that the theatre will be open three days a week from July and hopefully five days a week by the end of the year.

We need more consultants, we need more specialist nurses and we need to have a few more beds, not a huge number. But we’re spending the money anyway, in fact we’re spending a lot more because people are getting treated at such an advanced stage. It actually becomes cost-effective to do this properly.

He adds that the government and HSE seem committed to making real progress.

“Their indication of having a long-term plan is building a brand new theatre when they’re already building a new children’s hospital – that’s five or six years away. So to have the bravery to make that project happen – and it must have been the fastest project I’ve ever seen in HSE history because it was done within a year or 18 months – credit where credit is due.

“That gives us a long-term solution, which is to possible do children’s spinal surgery four or five days a week.”

Kiely says the old orthopaedic theatre will remain open at OLCHC.

“We still have a lot of other orthopaedic operations and we shouldn’t lose sight of that. The scoliosis kids are about 20% of all the kids who have orthopaedic problems that need treatment.

“These kids are growing, their bones are growing, they need surgery urgently so it’s not just children with scoliosis … whether it’s the hips or the knees or anything else, they need to be looked after too,” Kiely adds.

0201 Ombudsman for Children Scoliosis report copy Tommy listening to Dr Muldoon speak at the launch of the report Source: Sasko Lazarov/RollingNews.ie

In terms of getting more staff, Kiely says skilled employees need to be rewarded more and allowed to work “in a more flexible manner”.

“There may be people who would love to do it but can’t do it five days a week or they can’t do it on call. Even to try and develop this ethos of specialist teams, nurses, assistants, doctors, who work within a niche area and are not pulled in every direction.

The problem with Ireland is, because there’s such a shortage in staffing, people get pulled in all directions to try and cover every base and that is ultimately to our detriment.

Kiely says, ideally, a specialist children’s spine team could be created.

“You would have four or five specialists who really work in that area as their sole focus and again the same with the nurses and anaesthetics and physios and all that – you could have a world-class service if you did that.

“In our country, one of the things is because we haven’t developed that far, we could make those changes happen relatively easily. But it does need a definite willingness to tackle the problems and make the changes.”

Kiely says planning for the future of services needs to consider the views of children and parents who are affected.

Children need to be more involved in the decision-making process, they’re often not in the room at all, the parents aren’t in the room either when we’re talking about policies and services.

“People who’ve been through the process could give feedback on how things should be designed for the future.”

0086 Ombudsman for Children Scoliosis report copy The Ombudsman for Children, Dr Niall Muldoon Source: Sasko Lazarov/RollingNews.ie

Speaking at the report’s launch this week, Children’s Ombudsman Dr Niall Muldoon said: “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.”

He told TheJournal.ie he believes the four-month waiting target is ambitious but can be done if the “proper resources and funding” are put in place.

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.

“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.”

‘Significant improvements needed’

Health Minister Simon Harris, in a statement to TheJournal.ie, said bringing about “significant improvements” in terms of waiting times for scoliosis procedures is “an 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.”

0015 Ombudsman for Children Scoliosis report copy Tommy at the launch of the report Source: Sasko Lazarov/RollingNews.ie

A HSE working group is set to examine whether or not the introduction of a new grade of staff, theatre assistants, could help alleviate staffing problems.

When asked about current scoliosis services, a spokesperson for the HSE 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.”

Michelle has welcomed these promises, but wants to make sure they are delivered for her son and all other young people who are waiting long periods for scoliosis treatment.

Tommy is six, he’s going to have surgery until his adult life so I’m going to be here year after year making sure that every year this isn’t going to be another battle.

We’ll leave the final word to Tommy, who gave an impromptu speech at the report’s launch, telling those present: “We need to speed up the operations and the operations need to be earlier.”

Can’t watch the video? Click here

Read: ‘Children are eating paracetamol to get through the day, afraid of ending up in a wheelchair’

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

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About the author:

Órla Ryan

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