Monday 27 May 2019

‘Cruel system’ leaves girl (12) in 16-month wait for op

Waiting 16 months on an operation for a child with scoliosis is heartbreaking. Paul Deering speaks to a dad left clinging to hope

Aaron and Joan Daly with their daughter Sophia (12) who is awaiting a vital operation on her back
Aaron and Joan Daly with their daughter Sophia (12) who is awaiting a vital operation on her back

One could feel the frustration in Aaron Daly's voice. His 12 year old daughter Sophia is in dire need of an operation to correct a curvature in her spine but she has been taken off an urgent waiting list and along with some 40 other children has been left in limbo.

Another appointment with a consultant has been scheduled for October but Aaron says the situation is intolerable.

Promises from Minister Simon Harris that he would tackle the problem of waiting lists for those with scoliosis so that no child would wait longer than four months has simply not come to fruition.

Aarron stresses that the same commitment to tackle the problem has been given by every Minister for Health, going back to Mary Harney in 2009.

Aaron, a native of Derry and his wife Joan who is from Manorhamilton, moved to Dublin so that they would be near Crumlin Children's Hospital where Sophia had to attend for treatment.

She has cerebral palsy, arthrogryposis and scoliosis as well as epilepsy but thankfully with the latetr she hasn't had any seizures in a few years.

Sophia, who was born at Sligo University Hospital, developed scoliosis in 2013 and underwent surgery two years later after spending 16 months on a waiting list.

At that time, Aaron said the curve in his daughter's spin was over 100 degrees.

"Sophia had progressed to a point where she was very ill. She was losing weight, her internal organs were squashed.

"She was rapidly approaching the point of no return, as in they wouldn't have been able to operate if she got any sicker," says Aaron.

A rod was successfully placed in her back.

Little did the parents realise at the time that they would be facing the same situation three years later.

The rod subsequently came loose and she urgently needs another operation.

In April 2017 Sophia was placed on an active waiting list at Crumlin Children's Hospital to undergo surgery a second time.

For Aaron and Joan it's been a long list of empty promises regarding waiting times.

"Mary Harney made a statement in 2009 about scoliosis, James Reilly made a statement about scoliosis in the Dáil and made promises too, Leo Varadkar made a statement on it and he sent me a letter back in 2015 assuring me it was all in hand and this would no longer be a problem.

"Simon Harris has done the same but the reality is it hasn't changed. There's not one of them accountable for any of the decisions or promises they come out with," says Aaron.

Sophia was placed on the urgent waiting list in April 2017. She went in for pre-operative tests in June and was taken off the list on August 4th, the reasons being outlined in a letter to the parents from Crumlin.

It was stated that the pre-operative tests had shown a problem with Sophia's breathing and that she was no longer deemed suitable for surgery. It's a blow but one which Aaron and Joan are not prepared accept.

Sophia's status now is that she is simply suspended off the urgent list.

"And, this is where waiting list figures can be misleading," says Aaron.

"If Simon Harris says today that there are 98 children on the scoliosis waiting list for surgery, Sophia isn't one them. She is one of a group of 40 who have been suspended off the list.

"What you have is a manipulation in figures. so that it looks like they are doing better when in actual fact nothing has changed," he claims.

Aaron is adamant that Sophia cannot wait.

"She has to go for her surgery. Whether they do it now when she is in good enough health and at a good weight or if they leave it for another six months when her spine curvature has got much worse and is losing weight and in full time pain management.

"There's a rod in Sophia's back that's severely stressed with loose screws in it for over a year now.

"If that breaks in the morning or in the middle of the night, Sophia has to go for surgery anyway. So Sophia needs surgery whether it's now planned or not.

"The problems they have identified in leaving things as they area for example is a heavy sleep apnoea that can be caused by the scoliosis.

"By leaving her on the list complications can develop . There's nothing to say she won't develop more complication in a couple of months."

Aaron and Joan say their daughter has never been better in terms of readiness for her second spinal surgery.

"She has reached 20kgs for the first time in her life. The problem with the scoliosis waiting list is that they have to deal with the sickest kids first.

"For your child to get dealt with they have to become part of the sickest children's group.

"In effect, in Ireland in 2018 we have waiting lists for children where they have to get sicker to get treatment.

"All the money in the country.......they (Government) are talking about putting aside rainy day funds, but none of them are responsible, none prepared to take responsibility for actually giving results.

"How long has this Government been in power now? I have letters from Leo Varadkar when he was health minister saying this would all be addressed back then in 2015 in terms of a scoliosis action plan.

"And the target is that children will be seen in four months but why has there been forty children waiting for over a year and some for over two years for surgery?" asks Aaron, frustration clear in his voice.

Spohia's curvature this time around is almost 50 degrees. Aaron believes that if Sophia had been seen within four months back in 2013 a good correction would have been achieved in her spine.

"Instead, what they have to do.......the treatment in the HSE is all reactionary and damage control. They have to try to get it before it goes too far instead of getting in early.

"Ultimately, it is costing the HSE more because of the way the system is run and the poor management of the lists so each operation is more costly, there's more recovery time and ultimately less successful."

Aaron says his daughter's conditions means she will always have problems but that she should always be getting preventative surgery but this isn't how he see the HSE working.

The couple has emailed all politicians in their Dublin constituency with the "standard reply" from them all that they've forwarded their query to the Minister for Health.

The Minister for Children, Katherine Zappone was contacted but she has stated this was an area for the Minister for Health to deal with.

Aaron says the system isn't meeting the needs of children who need care the most.

"The system is cruel. There's no other way to describe it," he says.

Aaron says Minister Harris sent him a "cut and paste" letter regarding scoliosis waiting lists. It was sent to other parents too.

A letter was also received in June 2017 informing them that by the end of 2017 no child would have to wait more than four months.

"I have that in writing here." Sophia has been on the waiting list for 16 months or so again.

The Department of Health said: "The Children's Hospital Group advise that while they cannot comment on individual cases, they are committed to meeting the four-month target in 2018 and beyond," adding "it is acknowledged that there is still room for improvement" on scoliosis care.

The statement notes the additional €9 million provided to the HSE in 2018 will "stabilise and expand the current capacity to meet the demand for timely scoliosis treatment".

Sligo Champion