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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.
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
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.
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.”
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.”
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.
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.”
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.”
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.”
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I’d rather be locked down in January than Christmas
@Darren Byrne: at the rate there going it could be next Christmas.
@Darren Byrne: I’d rather be considerate and save lives but, each to their own I guess.
@iDarragh: are you not capable of doing both ? Following guidelines and living in an open society ? Or do you need to be locked in your house to feel good about yourself and “save lives” ?
Pippa “can’t” Hackett.
@iDarragh: https://twitter.com/FatEmperor/status/1330078923930144768?s=20
This is what you wont hear on RTE.
This is the reason we should not be locked down.
@Darren Byrne: why are we still going along with any lockdown with the information and knowledge we now have.? It’s a farce and an infringement of our communal civil and human rights
@iDarragh: who’s life do you think you are saving, you’d be better off joining the RNLI if youreally want to save lives.
@Vladimir Macro: if you read the whole of the Nature article, however, you will see that it still recommends continuing social distancing measures i.e. lockdowns
Minister is out of touch, Christmas is on, simple!
@Tom Bombdadil: exactly, enough of this lockdown shambles, easy for her to say it, she won’t be put out of a job like thousands of others
@Liam martin: Hundreds of thousands.
@Liam martin: probably will be out on her ear cone next election,
@Tom Bombdadil: To make it worse, she was rejected by the Laois-Offaly electorate in the February GE, but still manages to get a ministerial role.
Democracy is an illusion.
@Daniel Dunne: exactly. And we have the balls to mock American democracy? Pippa H totally and utterly rejected at the polls yet still gets propelled not only to the Senate but straight to cabinet!
@Tim Oconnell: hopefully!
Nphet will be advising a lockdown in January regardless. They’ve become lost in the hysteria of their own making
@JedBartlett: jed never mind nphet adviseing on january, lol, i expect the good doc to push for more on december 1st.
@JedBartlett: Holohan will be going for Level 6 and no-one home for Christmas next week. Not a shadow of a doubt.
@JedBartlett: Nothing to do with an extremely contagious virus?
@Declan McArdle: rte commentrary on the 6pm newsmade a slip and referred to level 6 restrictions a month ago when we were just into level 5. Are nephet keeping something up their sleeve. Perhaps there are other agendas at work if you read the w e fs thoughts on the usefulness of covid measures to get the 4th industrial revolution started with people working remotely as they are now etc
@JedBartlett: and your evidence??
Go ahead – lockdown all you like. The people will decide whether to play ball next time.
No one is asking for a free for all. People want a relaxation of restrictions with sensible precautions in social settings along with the right to use their own judgement.
@Damien McDaid: Exactly. She’s answering a question no one is asking!
Dear Santa, all I want for Christmas is a test and trace system that works. Thanks.
@Michael Flynn: santa says not this year, people have been too naughty
@Michael Flynn: 100% agree. An absolute tragedy that there wasn’t proper follow up at the time there were only 10 or so cases a day. We could have avoided this 2nd wave. At the same time any tracing system will only actually work if people isolate when they are meant to. Anecdotally , and in the press,there are cases of people wandering around the place out shopping etc while waiting for test results.
@Michael Flynn: spot on! Proper test and trace, cycle counts at 30 or below, follow ups on positives to clinically assess. we would be far more able to make the best decisions then.
@Santa: Well they have judging by the numbers of close contacts that haven’t bothered to show up for a test.
Lockdown? What lockdown? Coastal town in north Dublin heaving with people and traffic jams just like any pre covid19 weekend
@cill123: That’s really good, Cill123. Positive news. I was in Malahide at lunchtime and it was quite busy, I’m glad to say. A few long queues outside cafés and EVERYONE I saw was abiding by the rules. We need more and more of this.
These elected officials once elected think they are Gods and demand the public obey their commands.
@Paul Mc: what would you do differently?
@Paul Mc: well they did ask. They did ask us to elect them to make decisions. And we did.
@David Clements: she wasn’t actually, appointed.
@Brian Murphy: indeed she was, making the op irrelevant any way
If the numbers arent coming down then lockdown doesnt work. It cant all be blamed on people not following guidelines. From what I’ve seen people are following the regulations. There is an argument then that the guidelines are wrong. Or the reason for numbers not coming down is that the tests are unreliable.
@Ruairi Colton: do you think the numbers will come down if we just ignore all the restrictions so? What is your alternative?
@Ruairi Colton: Not all people are following the regulations Even a glance through today’s articles testifies to that being the case. So your reasoning for getting from “If numbers aren’t coming down then….”. to making a case for the tests being unreliable is simply flawed.
Minister who gets paid €106k tells general public many of whom have lost jobs, incomes, careers to buckle down
I encourage everybody to watch Pippas dismal defence of Helen McEntee on ‘the week in politics’ earlier. You could almost hear the last of the Green partys support walking away.
@The Risen: rather than watching a Land use and biodiversity minister (epic title ), I would rather put match sticks under my finger nails
@The Risen: It was incredible. As the Labour TD said on the show said, it was stunning to hear her diabolical defence of the Fine Gael minister. When asked about why FG didn’t let the parties in government know about the applicants that applied for the Supreme Court and on what basis did McEntee pick fellow Fine Gael member Séamus Woulfe, Hackett replied by stuttering ‘She did nothing wrong’.
This coming from a TD who wonders why there are more cars on the road. Schools are open so parents make one round trip in the morning to drop them off and then depending on ages of the kids two or three round trips to collect them as they finish at different times.
In a country where we produce some of the greatest medical device, pharmaceutical and IT technology in the world, the best defense against covid we can come up with are rolling lockdowns.
Irish people are not getting the governance we deserve.
@Padraic O Sullivan: suggestions?
@Michael Burke: South Korea, Slovakia, Taiwan…..
You know, all the places we dont compare ours to, or get mentioned on the news.
@Michael Burke: Plenty of alternatives that have been put out already. NPHET don’t appear interested and rather go with a strategy not supported by the WHO.
Obey what we are told to do!
Is this for general population or does it include senior judges and broadcasting personnel.?
This is how they prepare us for the blow later this week that restrictions won’t be lifted. We had pascal telling us something similar on Thursday it will ramp up now expect more and more of this from various other politicians from this clueless government. Although I voted for this government back in Feb i now don’t trust them one bit. Their failure to come up with any other solutions other than lockdowns and their make it up as they go along carry on is embarrassing. They sure won’t get my vote next time.
Unfortunately it’ll be either a sanctioned free for all for Christmas or unsanctioned free for all for Christmas. If videos from Cork and Dublin are anything to go by, the youth if the country are sick of lockdown and it’ll be hard for the Gardai to enforce restrictions.
@aidanshaw: that’s true but imagine if the Gardai had to disperse a crowd that size? They haven’t the manpower. They couldn’t enforce it.
@Alan Curley: alan im shocked we have not seen huge crowds gather the last few months.. Think cabin fever has kicked in pal. I think it will be straw that broke the camels back if nphet push for level 5 on 1st december.
“We have a week or so now to really buckle down, obey what we have been asked to do. Young and old should be really coming together to do this.” Reading this statement from a government minister fills me with anger/despair. What does Pippa think the vast majority of us have been doing all year? This is how to lose the public buy-in needed to beat this thing and is a perfect illustration of how her class has lost touch with the mood of the people.
@Martin Ryan: agree , although i believe they lost the people quite a while ago – the lack of any critical thinking , mature sensible plans strategies and the inability to build a ‘world class’ test and trace regime hasn’t helped. We actually reduced the tracing teams from 1800 people in April / May period down to 400 by end of september – i mean the whole world had been saying there was likely to be a second wave and we were busy finger wagging about young people / holiday home owners / old people wanting have chats with each other during on their walks / anybody with half a brain could in positions of power could have tried to enact a plan – decided to seals our ports and borders – aggressively test and trace – we have the advantage of being a small island not attached to the mainland of EU – 5 million people and we made a complete horlicks of trying to actually follow a strategy and plan – they won’t talk about their lack of testing of HSE staff – imagine some are only tested every 10 days !! – they wont talk about ANYTHING new and creative to tackle the xmas – what about Drunktanls so we dont have idiots in A+E – what about opening a night time economy and staffing and dining accross a much longer day – these ‘health authorities ‘ are incapable of brave crrative solutions -all they can say is lockdown lockdown follow the advice – they are devoid of any meaningful plan to balance like plenty of other countries have done – they are quick to claim how ‘well we are doing compared to other countries – but they also claimed that we have the most successful Covid app launch anywhere and then 500 000 had to delete it because it was faulty and we don’t hear another word – these health authorities in Ireland have shown they are miserable at crisis management – thats why we are the 4th highest spender in health per capita in EU and yet we have had a trolley ‘crisis’ for 20 years – and yet we seem to think they are going to miraculously improve in crisis management and handle this years ‘health crisis’ – i am sorry they won’t – the govt need to take the advice and then balance the livlihoods and mental health of the nation and reopen our society ( with sensible restrictions ) and then develop a plan around the 21st century solutions (mDNA vaccines ) and move away from the 16th century tactics of half quarantines for healthy populations and decimating economic life on the island altogether – the evidence will emerge this current lockdown is NOT the way forward in time.
The government/NPHET has got it wrong on so many levels. Firstly, lockdowns are ineffective and needlessly damaging to lives and livelihoods. This is well known at this point. But misguided as the government are, to open up for a few weeks at peak period for people to let loose and mingle completely undermines the albeit misguided strategy being pursued. We need to remove lockdowns and replace it with effective focused protection strategy to reduce both Covid and non Covid deaths. Such as is being advocated by Dr Jay Bhattacharya and thousands of other scientists, public health experts and doctors. https://youtu.be/vPj5yYAgee8
NPHET expects too much. They’ve become a shower of power pullers.
There’s more people dying from falling on their head in Ireland than there is of covid. I’ll take 3 days with everything back to normal and then lock down for 30 days-no problem.
January is always a lockdown month anyhow.. Let’s be having ya Christmas.
Mate, that’s fine. We were all expecting it anyway. No one does anything in January. It’s a poxy month of damp and brokenness.
While she will keep her salary. It’s a dangerous virus but everyone that is doing their part needs to have a break and be able to see their unregistered immediate family at Christmas. Companies won’t keep their staff with this constant yo yo effect of opening and closing until the vaccine is available. A touch of reality is now needed.
My sister was l in a tile shop near nass road, staff had no masks, no hand gel, customers on top of each other, people just browsing, lockup is nonsense
@New World Order: did your sister leave the shop when she noticed the issue, or continue to shop for tiles.
@New World Order: Did your sister not care either?
Its dry January anyway no one will be near a pub id take it all day long
@stephen harrington: It’s been dry 2020. I think most people would happily have a few in January if circumstances allowed.
Bow to your masters… Oh, and take a knee while you’re there.
Buckle down and be quiet, good little citizens.
This is no lockdown towns and sea fronts are heaving with people. Dr lockdown from NEPHET can bugger off.
@KSham: Since level 5 that minority has become a majority. Level 5 has seriously got peoples backs up. We are not children, and will no longer be grounded.
The reason that Ireland will be left behind regarding ‘green’ issues is due to the Green party themselves. Due to the party continue to defend over and over again the nepotism on display from Fine Gael and Fianna Fáil they’re ensuring that they will be absolutely wiped out in the next election. Listening to Hackett stating that McEntee ‘did nothing wrong’ and avoiding to answer questions was embarrassing for every Green Party TD. Not surprising their most ‘green’ members have already left the party.
Saving Christmas will inevitably result in some deaths. But not saving it will result in disappointment. I prefer disappointment.
@Nomis Andrews: savings Christmas will also help prevent a lot of suicides.
To those commenting re most people obeying the restrictions. I was up twice last night with my baby as large party going on behind our house as well as large groups partying in the park opposite our house. This has been going on every weekend since summer. Must be happening in other areas too. This will continue in December no matter the restrictions. So we are living in a situation where some are obeying and many are not which is keeping the numbers on the higher side. So my point is the restrictions are useless bit the Gardaí have no powers to stop the park parties and take away drinks.
@CSR: so what you are saying is because some people beside your house were having a party, this leads you to believe everyone all over the country are having parties and most are not obeying restrictions, so if I use your crazy logic I have seen no house parties near where I live so this must mean everyone is obeying the restrictions.
@CSR: why don’t you get together a lynch mob? Seriously your blaming this for the spread? Wake up
Minister Says……lost me after that ;-)
Put schools online for 2 weeks and we’ll save Xmas !
Who ?
Has this just dawned on her?
Ironic that Hackett uses the phrase “free for all” when it is the exact reverse of what she and others like her want for the people of Ireland. These restrictions are nonsense. It is about time people woke up to the tyranny this government is slowly but surely normalising, by lying that is for our own good. Death rates in Ireland are the same as every other year, if not less. We should not stand for this. Hackett should be in jail for threatening people like this
Not so long ago politicians had a free for all
OBEY commoners or we will have you in lockdown forever!!! You will work but that is all. No socialising, no enjoyment. Work home work. OBEY I tell you
It’s inevitable… Everyone is going to run wild at Christmas and new year… Lock down again by late jan
close schools and open shops. Kids a lot more resilient than local businesses
I’d love a big surprise in January???
have your say