CHILDREN WITH SCOLIOSIS are facing increasingly long waiting lists, despite extra money being allocated to help improve the situation.
In September, the HSE launched its Winter Initiative Plan, which 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.
The opening of a new orthopaedic theatre in Our Lady’s Children’s Hospital Crumlin (OLCHC) has been pushed back on a number of occasions due to difficulty recruiting staff.
It was supposed to open earlier this year, then by the end of 2016. It is now not likely to open until 2017. Construction on the theatre was completed in June 2016.
When asked about the delay in opening the theatre, a representative from the Children’s Hospital Group (CHG) said: “The recruitment campaign at OLCHC continues and this theatre will open when staff are recruited.
Market conditions continue to present challenges for the recruitment of support staff, particularly theatre nurses. However, every effort is being made to recruit these resources, including an international recruitment campaign in November which is expected to recruit nurses into the first part of 2017.
As for the HSE’s cash boost, a spokesperson for 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, told TheJournal.ie: “The plan is to have 15 to 20 paediatric patients either treated by the end of the year or with a date for surgery in January 2017.”
A spokesperson from Tallaght said the hospital has “HSE approval to send 23 scoliosis cases to the Mater Hospital”. This refers to patients over the age of 16.
As of 29 September, the most recent figures available, there were over 230 patients aged 18 or under with scoliosis waiting for a procedure in hospitals in Ireland, including 200 at OLCHC and 27 at Temple Street. This is up from 132 at OLCHC and 14 at Temple Street at the end of July.
Of the overall figure, 13 patients had been waiting for more than 18 months, 13 had been waiting for over 15 months, 29 for between 12-15 months, 63 for six to 12 months, 29 for three to six months, and 53 for three months or less.
Spinal procedures include:
Scoliosis in Ireland
Scoliosis affects about 1% of children and adolescents in Ireland. 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.
Michelle Long and Claire Cahill founded the Scoliosis Advocacy Network (SAN) to provide support for parents of children who have the condition, and to lobby the government.
Both women live in Kilkenny and have sons with scoliosis. They previously spoke to us in September but felt compelled to speak out publicly again as, despite promises, the situation has worsened for their children and many others.
When we last spoke, Michelle was very worried about her six-year-old son Tommy.
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, the rod became unhooked and cut through his bone. It was removed. Michelle says she was promised to get a date for an appointment for re-insertion before Tommy was discharged from hospital. This did not happen. She has still not received one.
“He’s gone through two years of surgery and operations … What was the point of it? He’s now left with no rod,” she notes.
His spinal curve has worsened dramatically in recent weeks, and he gets tired very easily.
Michelle says his body was able to “hold itself for a few weeks”. Prior to surgery, his curvature was 95-100%.
“It now looks as bad if not worse.
His left hip is completely uneven with the right. His stomach is kind of folded over itself. He’s very thin, but it looks like he has a muffin top.
“You can see his abdomen and belly button are absolutely slanted. I’m worried about the impact this could be having on his internal organs – his stomach, his lungs.
“He has started to eat a lot less, he needs to be eating more,” she says, adding that he is underweight for his age.
Below are some images showing how Tommy’s curve has worsened in recent weeks.
Michelle says Tommy tells her he’s feeling sick more often, something he used to do back in 2013 and 2014, before he had surgery.
She doesn’t think he’ll get an appointment this side of Christmas.
The children in his school are preparing for the nativity play now and he told me ‘I really hope I get the part of Joseph’. When I asked him why he said ‘because Joseph doesn’t move around much and my legs get exhausted’.
Michelle says Tommy and other children with scoliosis are “deserve better care”.
“Decisions are being made for resource reasons, not clinical reasons.”
‘Huge scandal’
Claire says there has been “no improvements for our children” in recent months, despite promises.
Our children continue to suffer and many become critical cases. Promises of increased capacity and the opening of the new orthopaedic theatre have been left unfulfilled.
“The situation is worse for our children. More nurses have left the service. There will be no new theatre for at least seven months and when it does open another theatre will close so there will be no added capacity.
“Children can’t access bracing, casting or even appointments on time.”
It’s so bad. I believe that one day it will be a huge scandal.
Claire says some children are waiting for over two years for their first appointment, and some people are not getting post-op reviews for three years.
In relation to capacity at OLCHC, the CHG said the hospital is continuing to “recruit specialised staff”.
“When theatre nursing staff are recruited the two theatres will be open simultaneously and this is targeted for Q2 2017.
In the meantime OLCHC plans to commence use of the new orthopaedic theatre with the state-of-art orthopaedic equipment once staff have been trained to use the newly installed equipment – this is currently a work in progress with the aim to commence in December 2016. The hospital will close a theatre when this happens, thereby not increasing capacity in the initial phase.
“As we await the recruitment of staff to increase theatre capacity and, in the best interest of patients attending the hospital, OLCHC will use the state-of-the-art equipment in the new theatre for surgeries that require this particular equipment.
“Recruitment still remains the limiting factor to increasing theatre capacity.”
During the week, a number of parents received letters saying that upcoming appointments at OLCHC have been pushed back by several months.
TheJournal.ie saw one of the letters, it does not give an explanation for the postponement.
In a statement, a spokesperson for OLCHC said the hospital “does not comment on individual patient cases”.
“Out patient appointments are deferred for a number of reasons which include a change in working schedules,” the statement added.
Independent review
The SAN is calling for a full clinical review of scoliosis services in Ireland. They want it to be carried out independently of the HSE. They also want waiting lists to be closed to highlight how serious the problem is, and that the system cannot cope.
Claire’s son Darragh (7) was diagnosed with infantile scoliosis at the age of two-and-a-half.
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 15 months.
He is finally due to have surgery this week. Claire says she was recently informed that he will also need halo traction prior to surgery. She says this was never previously mentioned, but believes he may not have needed this if he had received treatment sooner.
“It’s hugely invasive. Six bolts will be put into his skull … it’s to give his chest more room and to pull his spine up.”
Claire says she was upset to be hold the news “in a corridor while two children were watching Peppa Pig beside me”, adding that the lack of privacy afforded to parents at the hospital is unacceptable. She does not blame this, or the waiting lists, on frontline staff, saying they have to work in difficult conditions.
Claire says the surgery may result in Darragh being peg-fed (fed through a tube) for months afterwards.
“I had to show him pictures of halo traction this week and explain what it is. That was very difficult.”
Guilt
Despite all of Darragh’s issues she says many other children are much worse off and she feels guilty about him having an appointment while others who are “as bad or worse” are left on waiting lists.
“You can’t compare kids, but I’d nearly say to Michelle to take Darragh’s date. I feel so bad, not just for Michelle – I know many other parents in situations that are as bad.
It’s absolutely horrendous on children. Pushing back appointments is crazy.
Claire says the €2 million allocated scoliosis services in the HSE’s Winter Initiative plan is great for the children who will benefit from it, but more needs to be done.
“Even at that, it’s just throwing money at the situation and not fixing the fundamental problems.”
Claire says one good thing to come out of the meetings with the CHG and the health minister is that a taskforce to look into what services are needed to improve scoliosis services is being set up. However, she wants action now, not months or years down the line.
Speaking in the Dáil about scoliosis recently, 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 (OLCHC), 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 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.”
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.
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