A Kilkenny girl will travel to London for surgery to correct curvature of the spine following long delays at Crumlin children’s hospital – but attempts to blame delays on recessionary cutbacks ignore the roots of a long-existing crisis
JAMIE MURPHY is 11 years old but weighs just slightly more than two stones. She suffers from spina bifida and scoliosis, a condition that causes curvature of the spine and that only complex surgery can correct.
Her parents, Emer and Peter, from Graiguenamanagh in Kilkenny, were given to understand last October by Our Lady’s Hospital for Sick Children in Crumlin, Dublin, that her condition was deteriorating and she would need surgery “quite quickly”. They say the hospital hoped to schedule her operation before Christmas but ultimately she wasn’t even called for pre-operative screening tests until Easter.
A few weeks later, as they waited anxiously for a date for her operation, they were told, they say, by her consultant surgeon that due to cutbacks at the hospital, including the closure of a theatre, there were no guarantees on when the surgical team would get to Jamie.
Gobsmacked and desperate for help, the family began scouring the internet and found Great Ormond Street Children’s Hospital in London. As arrangements were being made for Jamie to travel there for assessment and for fundraising to begin to cover the costs involved, an anonymous donor said he would make it all feasible by footing the bill whatever the cost. It come to €100,000 or more.
Jamie, who it has since emerged hadn’t even got to the point of being put on a surgical waiting list in Crumlin, will travel with her parents to London on Wednesday and is pencilled in for surgery this day week.
In the midst of the furore over Jamie’s case, many may have believed cases like hers are only coming to light now as a result of hospital budgets being slashed in the current economic climate. Nothing could be further from the truth.
CAST YOUR MIND back to late 2007, when there was similar controversy over the treatment of Cork girl Ann-Marie Kelleher, who also had to travel to the UK for spinal surgery after her operation, which she had already waited months for, was postponed by Crumlin hospital. She has made a brilliant recovery.
Her mother, Bernadette Kelleher, expressed the wish at the time that no other family should go through what they did to get vital treatment for their child.
So she was “shocked” when she read in recent days about the case of Jamie Murphy and several other children still being left waiting months for life-altering spinal surgery.
“To see how children are left to suffer, it’s just shocking . . . I actually drove down and met that family ,” she says.
“There is a hell of a lot of things shutting down, but I will not be told this is all due to cutbacks. This was going on back in 2007. That doesn’t wash with me at all – letting on its all due to cutbacks and the recession. No way,” she adds.
HSE figures show that in 2008 over 5,000 operations were cancelled at Crumlin, the national centre for treating children with cancer and cardiac problems as well as a range of other conditions. In the first five months of this year, another 2,000-plus were cancelled.
Nearly 1,000 patients are on the hospital’s inpatient waiting list at present, with 185 of these waiting more than 12 months to be seen.
It emerged in April through a Freedom of Information Act request that the hospital, in the face of a €9.6 million deficit by year’s end, was planning to close a 25-bed ward and a theatre from May 1st. It also planned further ward and theatre closures in July and August, but rowed back on these in recent days “in light of the existing pressure on services and the potential impact on children and families of additional closures”.
Undoubtedly, though, the closures put in place in May, which are continuing, will lead to children waiting longer for treatment. The hospital has always been under financial strain but now cutbacks have the potential to make things even worse. There is conflict between the hospital and health service management on where savings could be made and on the effects of the cuts. HSE sources say their figures indicate that only about 5 per cent of the operations cancelled between January and May this year, for example, were put off as a result of beds or theatre space being unavailable. On the other hand, maybe more cases would have been scheduled in the first place had more theatre time been available.
It also says the three Dublin children’s hospitals need to work more closely together to realise efficiencies but ample documentation is available showing Crumlin was writing to HSE officials as far back as 2007 looking for a group to be put in place to allow just this, but it didn’t happen. As one Crumlin source puts it: “All of a sudden it’s their great idea for us to work together, when we wanted to for years and they are frustrating us.”
THE HOSPITAL ALSO argues vehemently that, while it has received an extra €36 million in funding since 2004, bringing its budget this year to €134 million, it has delivered more care than ever before on foot of it. Theatre procedures have gone up 34 per cent, ICU bed days have gone up 21 per cent, outpatients up 23 per cent, day cases up 30 per cent.
Dr Patrick Kiely, an orthopaedic surgeon who carries out spinal surgery in Crumlin, says it is a “smokescreen” to suggest the current crisis is all as a result of this year’s cutbacks. Problems over the under-resourcing of paediatric orthopaedic services in the State have been highlighted for years, he says.
There are, he points out, four orthopaedic surgeons in Crumlin, when the number of children attending requires double that. One of his colleagues has about 100 children attending one day’s clinic for assessment, he says. “You can do the maths on it. How can you have a proper consultation when you have that? Because everybody is in a hurry there is potential for misunderstandings,” he says.
The hospital can’t even give dates for routine orthopaedic outpatient appointments any more, he adds. Instead, staff have to prioritise those who seem most urgent on the basis of GP referral letters or letters from other hospitals and concentrate on them. The problems in Crumlin, he contends, mirror to some extent those in the health service as a whole, such as the failure to fund cost-saving early interventions, as well as the practice of providing block budgets for hospitals rather than ensuring money follows patients.
On the issue of early interventions, he says a simple, effective and cheap screening programme could be put in place to pick up hip instability at birth – something that affects one in every 80 children – and it would, he says, save millions in the long run. At present, he says, “the late diagnosis rate for developmental dysplasia of the hip is a scandal in this country”.
If picked up at birth, a simple harness in the first days and weeks of life will suffice in 90 per cent of cases. But if picked up at six months or later, poorer outcomes are almost guaranteed, leaving the door open to the possibility of legal actions. And while Minister for Health Mary Harney has suggested that if the three Dublin children’s hospitals worked more closely together €20 million in savings could be generated and many of these problems solved, Kiely insists the problem, for scoliosis patients in particular, won’t be solved until funding is “activity related”. “You have a highly trained group of people who want to do this work but who can’t do it. We know what we need. We need theatre time and with that comes personnel . . . By not resourcing it now it ends up costing the State a lot more in the long run,” he says.
LAST YEAR 102 children were listed for spinal surgery at Crumlin. It went ahead in just 40 cases. The time they waited for their surgery ranged from one month to two years, and in a quarter of these patients the curvature of their spine had increased by 10 per cent or more while they waited for surgery.
Kiely says proposals were sent to the HSE in January and again in the past week on how deficiencies in paediatric orthopaedic and spinal deformity surgery could be addressed. They await a response.
The HSE says it is in the process of establishing a group to review the workload of the three paediatric hospitals in Dublin and that it is currently reviewing the paediatric orthopaedic surgery waiting lists nationally.
It all comes down to the classic question of why things we know work are not put in place, according to Prof Charles Normand, a health economist at Trinity College Dublin.
“You could say it’s in some way similar to the problem of cystic fibrosis, where we have known for a long time that people in Northern Ireland live eight years longer than people in the Republic with cystic fibrosis. Their services are organised much better and outcomes are better,” he says.
Major health-service reforms commenced a few years ago, with the establishment of the HSE to sort these very issues out. Thus the question arises: have the reforms failed or have they been given insufficient time to work yet. “I suspect it’s a bit of both,” says Prof Normand.
Donal Duffy of the Irish Hospital Consultants Association says he has no reason to believe Crumlin is any different from many other hospitals around the country in terms of its budgetary difficulties this year. Budgets have been cut all over the place, hundreds of beds have been closed and more are on the cards during the summer months. “Many of the measures introduced strike at the very heart of front-line patient services, such as reduced budgets and the moratorium on recruitment and replacement of staff,” he says.
HOWEVER, DOCTORS IN Crumlin make the point that their hospital is unique in that many children with complex needs can’t be treated anywhere else in the State. These children, unlike adults, can’t skip the waiting list and go private – the National Treatment Purchase Fund has, for example, only been able to fund six spinal surgeries on scoliosis patients in the past three years, because it generally avoids extremely complex procedures – or ask to be referred to another hospital.
They argue that they therefore have a unique case for extra funding.
Neither Mary Harney nor the HSE are convinced. Speaking in the Dáil this week, Harney claimed Crumlin could collect €3 million it was owed by private health insurers to help it though its current woes and could save a few million more on blood products if it had a closer relationship with St James’s Hospital. Crumlin sources say millions of savings on blood products is just not a runner and that nobody has given a breakdown of how the €20 million could be saved if the three children’s hospitals worked more closely together.
Meanwhile the HSE has sent in one of its own senior financial people to look at Crumlin’s finances. Already the indications are that the measures it has now taken will result in it breaking even at the end of the year, it says.
However a senior member of staff at Crumlin says: “We have a theatre closed at the moment. We may have to close more in November. We don’t know yet because we have to break even.”
Fine Gael’s health spokesman, Dr James Reilly, who put down a motion in the Dáil this week calling for the cuts at Crumlin to be reversed, says that if his party were in power money would follow patients and savings would be made elsewhere, by abolishing bonuses for senior HSE staff and so on.
All that will be too late for many children currently waiting for much-needed surgery. Triona O’Brien, aunt to Jamie Murphy, says the family feel angry and let down over what they’ve been put through. They will be eternally grateful to the donor who has allowed Jamie to be listed for her operation. Their trip to London this week will be full of emotion – hope that all goes well, relief that surgery has been scheduled, tinged with a little sadness that they will miss their youngest child’s first birthday on July 12th.
In Tuesday’s Healthplus Maurice Neligan writes about working in Crumlin Children’s Hospital