Ann-Marie Kelleher's spinal condition is painful and progressive, but health authorities kept postponing her vital surgery, until her angry parents forced the case onto the airwaves, writes Eithne Donnellan, Health Correspondent
Sitting in the front room of her north Cork home, Bernadette Kelleher proudly shows off photographs of her first-born child, Ann-Marie. In one of them, Ann-Marie, with her flowing black tresses, is pictured with her dad Tom and little sister Catriona in a snow-white first Holy Communion dress. There are others of Ann Marie out for spins with her dad on his quad bike.
The photos were taken only a few years ago but the image they present is in sharp contrast to those of Ann-Marie today. Aged just 12 years, she is bent over and in constant pain, crippled with scoliosis, a condition which leads to severe curvature of the spine.She is on large doses of painkillers and has been waiting for spinal surgery to help ease her plight for months.
Ann-Marie's spinal condition, which is secondary to Rett's syndrome which seemed to just come over her when she was 16 months old, began to manifest itself in early 2006; her mother took her to the family doctor and was referred to Cork University Hospital, where an X-ray found she had a 45-degree curvature of the spine.
She was fitted with a Boston brace to try to correct the problem, but the brace affected her breathing and had to be discarded.
A friend of the Kellehers in Kilkenny, who also has a child with scoliosis, suggested that Bernadette should have Ann-Marie checked out at Our Lady's Hospital for Sick Children in Crumlin, Dublin. Bernadette gate-crashed an appointment her friend was having with a Crumlin-based scoliosis nurse in Kilkenny in early 2007 and outlined her own child's predicament. She was offered an appointment to have Ann-Marie assessed in Crumlin in April 2007.
The assessment involved a number of blood tests, scans and X-rays and it was made quite clear that Ann-Marie would need surgery to help correct the curvature of her spine. Mrs Kelleher was told her daughter would be called back for a host of pre-operative tests as soon as was possible.
THE KELLEHERS WERE recalled to Crumlin in June 2007 and, having travelled up from their home in Killavullen near Mallow, they spent almost a week in Dublin while a battery of tests was being carried out on Ann-Marie. During this time they also met with consultant orthopaedic surgeon Jacques Noel, who made it clear to them, they say, that he wanted to operate on her "sooner rather than later" as the curvature of her spine was getting worse. At this stage the curvature was put at 64 degrees.
The Kellehers returned to Cork, confident their daughter would be operated on within a matter of weeks.
A month later, in July 2007, they attended an outpatient clinic held by Jacques Noel in St Mary's Orthopaedic Hospital in Cork. They raised the fact that they still had no firm date for their child's operation and they claim the surgeon, who could not be contacted yesterday, told them to make noise about it.
"We were constantly ringing, constantly phoning, we were blue in the face ringing to see if we could get an appointment," Bernadette recalls.
She contacted her local Labour TD, Sean Sherlock, who wrote to the hospital and received a letter in reply, saying the hospital couldn't discuss details of a patient with him without the consent of the child's parents. A few days later, on September 6th 2007, Bernadette and Tom Kelleher wrote two letters to the hospital, one giving their consent to have the matter discussed with Mr Sherlock, the other a strongly worded letter outlining in no uncertain terms how urgent they felt their child's surgery was. It pointed out that Ann-Marie had not been at school since the previous March as a result of her worsening condition.
"She cannot sit up any longer, she cannot sleep as she is literally wriggling around her bed hoping she will get a comfortable position that will allow her to sleep. She would need changing three to four times throughout a single night due to the sheer exhaustion of trying her best wriggling about her bed trying to get comfortable for sleep.
"She is in a ball of sweat constantly dealing with the sheer discomfort. It is nothing short of cruel watching over her. It is heartbreaking when surgery can change her life," their letter said.
It went on to question whether Ann-Marie might be treated differently if she were not a special needs child, if she could talk up and explain the discomfort and pain she was suffering. The letter ended with a list of pertinent questions: when would Ann-Marie be called for surgery, would the operation be carried out before her condition became inoperable, who was responsible for fixing surgery dates?
The following month - October 2007 - Bernadette decided to go public. She spoke to a number of newspapers about the fact that her child had at that stage been waiting for several months for an urgent operation and there was no sign of it being scheduled.
On October 17th, after the media coverage, Jacques Noel contacted her by telephone and told her, she says, that Ann-Marie would be scheduled for her operation on either November 28th or December 2nd.
As far as the Kellehers were concerned, the publicity had worked.
But, in the days afterwards, Bernadette Kelleher received nothing in writing, no appointment slip, nothing. So she rang the hospital a few weeks later and claims she was told by a junior doctor that he didn't know how she had got the impression her child was due for surgery on November 28th or on December 2nd, because she was not listed for surgery on either of those dates. The Kellehers were dumbfounded.
It was as if they were imagining things. But they weren't, because the Health Service Executive (HSE) had also been informed by the hospital in October that Ann-Marie Kelleher was due to be operated on on either November 28th or December 2nd, and had used that information to provide a reply to a parliamentary question at that time.
Bernadette says she never got an explanation from the hospital as to why Ann-Marie wasn't called for surgery on either of those dates.
CRUMLIN HOSPITAL, WHEN contacted, said it could not discuss individual patient cases but said all dates for surgery are provisional and whether operations go ahead will depend on beds and all the necessary backup resources being available on the appointed day.
It added that it endeavours to treat all patients on the basis of medical need. "All emergency cases are treated promptly at Our Lady's Hospital, Crumlin," it said.
At the time, after two possible dates for surgery falling through, the Kellehers didn't know which way to turn. They spoke to the Rett Syndrome Association in the UK, which suggested one option might be to take Ann-Marie to see the medical advisor to the association, Dr David Harrison, a consultant orthopaedic spinal surgeon in London with vast experience of dealing with Rett Syndrome and scoliosis. They contacted him at the end of November and made an appointment to see him on January 4th this year.
Then, on Christmas Eve last, after the Kellehers had booked flights to London to see Dr Harrison, a letter arrived from Crumlin to say an appointment had been arranged for Ann-Marie at the hospital for surgery on January 20th. The Kellehers decided to proceed with the trip to London, given it had already been arranged. Ann-Marie was sedated for the flight.
Dr Harrison indicated the curvature of her spine was now over 100 per cent, Bernadette claims, but she says he was confident if he operated he could reduce the curvature to about 30 per cent. He was also confident the surgery, which would have to be done at two different sittings about a week apart, could be arranged fairly swiftly.
As the Kellehers began to think about how they would fund her surgery in the UK, which would cost around €100,000, news came to their GP that Ann-Marie's January 20th appointment in Crumlin had been cancelled because there was no paediatric anaesthetist available on the date. No alternative appointment was offered, but they weren't optimistic about being seen there quickly as the waiting list for children in need of spinal surgery in Crumlin is, according to the hospital, up to 12 months long.
The hospital has said 46 children are now awaiting spinal surgery at Crumlin and 40 per cent of them were waiting 6-12 months for their surgery. The remainder are waiting six months or less. None are waiting more than a year.
Knowing these waiting times, the Kellehers feel fortunate they hadn't cancelled their child's assessment in London last month.
They decided, in the interests of their child being seen quickly, to speak to Noel about recommending to the HSE or the National Treatment Purchase Fund (NTPF) - which funds private treatment for those waiting more than three months on public hospital waiting lists - that funding be provided for Ann-Marie to be treated in London.
In a letter dated January 21st, and addressed to any concerned party such as the NTPF, Noel wrote: "I have been unable to progress her case here due to limitations in access to theatre and a waiting list currently over eight months in length." He added that Ann-Marie had been assessed by an expert in the field of scoliosis and in particular in the care of spinal deformities in Rett syndrome in the UK and he strongly supported her case for funding to be provided for this surgery in the UK by the HSE or the NTPF "as it is unacceptable for her curve to continue to worsen on an unacceptably long waiting list in this country".
BUT THE NTPF option was not available. Essentially, the patients it funds for treatment in the private sector at home and abroad at present have less complex conditions. A spokesman for the NTPF said that "in exceptional circumstances, including highly specialised and complex paediatric cases, neurosurgery and others, the NTPF may not, for reasons of patient safety, be in a position to source faster treatment at its approved hospitals, in Ireland or abroad".
He added: "For specialist treatment that is not available in this country, there is a long-established system, the Treatment Abroad Scheme (E112 form), where treatment may be provided in another EU country. This scheme is run by the Health Service Executive and is completely separate and distinct from the NTPF. The NTPF has no involvement in the management of this scheme."
Noel wrote to the HSE chief executive, Prof Brendan Drumm, on January 25th - just over a week ago - stating the family had been turned down by the NTPF, and that the HSE should consider funding the operation in the UK. His letter also referred to waiting lists in Crumlin and Temple Street. It said: "As you are aware from my previous correspondence and requests for anaesthetic cover I have very restricted access to operating theatre facilities. Miss Kelleher is one of many children on expanding waiting lists here in Crumlin, both my own and my colleagues.
"I have discussed referring these patients to my colleagues at Temple Street Children's Hospital with them but their waiting lists are likewise excessively long.
"Ann-Marie has been waiting in excess of eight months now. Her spinal deformity is progressive . . . the family have been told that NTPF is not capable of taking on this case . . . as her operation cannot and has not been done within a reasonable timeframe I feel she is suitable for funding for treatment abroad. I would appreciate it if you could give this matter your urgent consideration."
When the Kellehers were then told that they didn't qualify for the HSE's treatment abroad scheme it was the final straw. An official in the scheme conveyed the message to them through their GP.
Bernadette decided it was time to go to the media again. She e-mailed TV3, the Evening Echo in Cork, RTÉ's Liveline and a host of other media outlets. A businessman who heard her describe her awful plight on Liveline donated the €100,000 required for her daughter's operation in London. The Kellehers are over the moon and are now just waiting for a date for the surgery, but expect to get an appointment within weeks.
They say they will be eternally grateful to the anonymous donor who they believe has saved their daughter from an early grave. But they are angry things had to go that far, and that their child couldn't have been treated by the health service here with the urgency she deserved.
"I'm not willing to close the door on this. Surely Tom and I are entitled to an explanation. Why did we find ourselves in this situation? It should never have got to this . . . is nobody answerable?" asks Bernadette.
She is furious that a rich country like Ireland could treat a vulnerable child like hers the way it has. Her husband Tom refers to all the money that was spent on blood and other tests in Crumlin in June, which he says was wasted when the surgery didn't follow immediately afterwards. "What's that after costing? Sure that's where the money is being wasted in the health system," he said.
Bernadette is also furious with the HSE, which is responsible for the day-to-day running of the health service.
"I'm really disappointed. I'm disgusted that still at this stage nobody from the HSE has even made a phone call to me . . . If they don't want to come out publicly and say what's happened in this case then surely they can meet myself and Tom and explain . . . we are entitled to answers. We need answers and we'll not stop until we get answers," she added.
She is considering taking legal action over the delay in treating her daughter, not just for recompense but also in an attempt to find out why the family were messed around and promised appointments at Crumlin which never materialised.
She also dismisses assertions from those in authority that they cannot comment on individual cases. "I mean, we are blue in the face from listening to that . . . I'm talking about Ann-Marie and I am not hiding anything in relation to Ann-Marie's file. I couldn't care less if Ann-Marie's file was up in every newspaper . . . so how can they come out and say that they're not commenting on an individual case when I had to go out and tell the country of how they were treating my individual daughter? Somebody has to be answerable."
Choking back tears, she continues: "Ann-Marie has been treated worse than an animal, she really has. It's just sickening.
"The amount of pain that that child goes through is disgusting. It really is. I had a doctor here on Saturday night and she told me the amount of pain relief that I was giving her, that I could actually kill her . . . I said do I let her die in pain or do I just try and relieve the pain. I mean, in the name of God what do I do? It's just absolutely crazy."
Asked if she felt the fact that the family doesn't have private health insurance made a difference, she says she honestly doesn't know, but that she was told by staff in Crumlin that it didn't matter in cases such as Ann-Marie's.
THE HSE SAID this week that the Treatment Abroad Scheme only covered procedures which could not be carried out in Ireland. Asked why it didn't make an exception in this case to alleviate Ann-Marie Kelleher's pain, it indicated it had to abide by the rules of the scheme.
Then yesterday afternoon it emerged that the HSE is now offering to cover Ann-Marie's treatment abroad after all.
Asked about this change of heart, it said the rules of the Treatment Abroad Scheme were being changed by the Department of Health.
A spokeswoman for the Department of Health confirmed it was in the process of revising guidelines for the scheme. It indicated this was on foot of European Court rulings and said the scheme would in future cover patients who could not get treatment in Ireland "within the time normally necessary for obtaining the treatment" and taking into account the patient's current state of health.
But the Department also said the HSE has always had discretion to refer patients abroad outside the terms of the scheme if it felt this was necessary.
Meanwhile, Crumlin hospital indicated it understood the child could be funded to travel abroad because a clinician in London was offering her a better outcome.
A spokeswoman for the hospital confirmed that, while it treats children with Rett Syndrome, it has never before had to operate on a child with such complex spinal problems as Ann-Marie Kelleher, even though it has the staff who would be qualified to do such an operation. It said the team involved in caring for Ann-Marie in Crumlin had received correspondence in the past week from the consultant who had assessed her in London and he was guaranteeing her a better outcome than clinicians in Crumlin could.
In any event, it seems the HSE is now offering to pay for the treatment in London.
Whether the long overdue offer is accepted by the Kelleher family remains to be seen.
Mrs Kelleher said last night she would need to see the offer in writing and it would have to go through her solicitor before she would believe it would actually happen. She has seen too many false promises to take this one at face value.