“When your child’s needs are 24/7, you have no energy for legal action” – Families are let down by the state
When Dylan Kenny was born, his parents knew immediately something was wrong.
e was blue and not responding. Within seconds, seven doctors and nurses were gathered around him and he was taken to a neonatal unit.
Remembering those moments 12 years later still makes his mother Claire O’Brien emotional.
The next day, a doctor spoke to her and her partner, Lloyd Kenny, for about an hour. “The only part of the conversation that I picked up was the words ‘brain damage,'” Claire said.
Dylan’s parents asked what went wrong, and according to Claire, they were told, “These things happen. It’s nobody’s fault.”
Unless it was someone’s fault. Due to negligence, Dylan suffers from cerebral palsy and acquired epilepsy, is unable to walk unaided and requires around the clock care and assistance.
Hospital records showed that the fetal heart was not properly monitored and signs of fetal distress and hypoxia were not recognized or responded to. Dylan was delivered far too late.
Four years later, in 2014, the High Court approved a €2million settlement after Waterford Regional Hospital apologized to the boy and his parents for devastating injuries that should not have happened.
The settlement was a preliminary settlement to cover his care needs for the following three years, including a selective dorsal rhizotomy to destroy problematic nerve roots in his spinal cord. The operation took place in the US as it was not available in Ireland.
Since then, significant flaws in the handling of such cases under Irish law have required his parents to return to court twice more for further preliminary settlements and will have to do so again in 2025.
She and other parents in similar situations describe it as a stressful and grueling process, each preceded by intensive medical evaluations of up to a year. These are experts engaged on their behalf and experts representing the State Claims Administration (SCA). Negotiations between the two sides follow in order to agree on an appropriate interim solution. The experts on both sides are often very far apart as to what is needed.
Medical negligence attorney Joice Carthy of Augustus Cullen Law described those negotiations as “invariably hard-fought with very substantial disagreements between the parties’ experts as to what the plaintiff actually needs” for nursing, occupational and other therapies, aids, appliances and technical items.
“It’s hard to put into words how emotionally stressful it is,” Claire said.
“We only asked that our injured child be given what he should be given. Nothing outrageous. We wanted to give him quality of life. But we encountered a struggle around every corner. Fighting against it is, in my opinion, only small. I don’t know how else to describe it.”
Agreement has been reached each time the matter has been heard in court or on the court steps.
The process shouldn’t be like this. However, for parents like Claire, it’s currently the least-worst option available.
Until 2010, the only way to resolve a medical negligence claim was to accept a one-time lump sum payment to settle the case fully and finally. While this was appropriate for many types of cases, it was not appropriate for most with a catastrophic injury. One reason for this was the difficulty in predicting the life expectancy of the injured person.
If the prediction was too conservative, the person risked facing the prospect of running out of funding for their care needs. Also, there are often big differences in the predictions made.
For example, in Dylan’s case, his parents decided against a lump sum when they went to court because there was a 20-year difference between their experts’ predictions and those of the SCA.
In 2010, a Judicial Working Group on Medical Negligence recommended the introduction of periodic payment orders (PPOs). These have existed in the UK since the 1990s and have involved ongoing payments to cover the cost of care without the need to constantly go to court.
At the time, the government indicated that the necessary legislation would be introduced soon and that in the meantime, as an alternative to lump sums, the parties could agree to settle cases on an interim basis, with damages being paid for periods of two or three years.
However, delays in introducing the law meant that families have since had to go to court several times to obtain interim payments, each time enduring a new round of assessments and negotiations.
When the law was finally passed in October 2018, it proved so flawed that most attorneys would not recommend PPOs to their clients. In fact, only six PPOs have been created to date.
The stumbling block was and is the index used to ensure the value of payments is not eroded over time by inflation.
The model introduced uses the harmonized consumer price index based on the recommendation of an interdepartmental working group. Recommendations by the Judicial Working Group for an index linked to caregiver income and changes in the cost of medical and assistive devices and appliances were ignored.
With nurses’ wages rising significantly faster than the consumer price index, lawyers feared the value of bonuses would diminish over time and not be enough to cover their clients’ care. “At the end of, say, three decades, the plaintiff may only be provided funds to pay approximately one-half to two-thirds of the care that is required and assessed in awarding the PPO award,” Ms. Carthy said.
The same mistake was made in the UK in the 1990s when the consumer price index was also introduced, only to be dropped in favor of a more appropriate index after a series of legal challenges.
Why the wrong option was chosen in Ireland in 2018, given the UK experience, is unclear.
The underlying actuarial calculations have never been published.
By November 2019, just 13 months after it was passed, the PPO legislation was being called a “dead letter” by a High Court judge.
Ms Judge Deirdre Murphy said it was clear that no competent financial expert would recommend a PPO linked to the Harmonized Index of Consumer Prices.
Since then the situation has not changed.
This week, the Justice Department said another interdepartmental group would be set up to consider a new indexation rate.
However, current legislation does not allow Attorney General Helen McEntee to replace an alternative index until October next year. The department said it was trying to get around the problem by changing the legislation and the changes would be released in the second quarter of the year.
In the meantime, families must continue to go through the process described by Claire and other parents.
In a statement, the SCA insisted that it is taking every step possible to ensure litigation is handled sensitively and, whenever possible, that those affected and their families do not contribute to the significant hardship they are already suffering.
It also insisted that it use mediation wherever possible and give high priority to treating families who have made claims with dignity and compassion.
But for Claire and other moms like Colleen Worthington, the situation can’t be rectified fast enough.
Colleen’s daughter Skye, 10, suffers from cerebral palsy after suffering brain damage at birth. She cannot walk, sit, or speak unaided, and can only communicate using special eye-sight technology.
Skye Worthington with her mother Colleen. Photo: Daragh McSweeney/Deployment
Along with Skye’s father Kevin, Colleen went to the High Court in 2015 where they received an apology from Kerry General Hospital.
The court heard Skye would not have been injured if she had been delivered 15 minutes earlier.
So far, the court has approved three interim payments totaling €8 million for her care. Another review is due in 2029.
According to Colleen, they considered accepting a lump sum the last time in 2020, they were so weary from the repeated barrage of assessments and negotiations.
“The court process can be very time-consuming and very stressful. It knocks you down We were like, ‘let’s just deal with this, let’s just end this and get the dishes out of our lives,'” she said.
However, when major disagreements emerged between the experts on both sides regarding life expectancy, they decided on another interim solution.
“There was this fear that eventually the money for care would run out,” she said.
Skye’s care needs are great and it’s easy to see where the money from the settlements is going. Caregivers have to help her with her meals and move her from place to place as it is difficult for one person to do it alone.
She cannot be left alone in a room for fear of coughing and choking.
The equipment needed in the home is niche and therefore expensive.
Colleen gave the example of a special chair used for Skye’s posture management.
“It looks like an ordinary chair, but it costs 8,000 euros,” she said.
Skye needs a special air mattress to avoid pressure sores because she can’t roll over and has to do an hour of physical therapy before she gets up in the morning.
“The funds we want are to help Skye reach her full potential. We want the money for that. Nothing else,” she said.
“When you have a loved one who is medically complex, it is exhausting. Skye is 24/7, so you don’t have the energy to fight the legal process and question everything.”
https://www.independent.ie/irish-news/when-your-childs-needs-are-247-you-dont-have-energy-for-the-legal-process-families-are-being-let-down-by-the-state-41512754.html “When your child’s needs are 24/7, you have no energy for legal action” – Families are let down by the state