‘When your child’s needs are 24/7, you don’t have energy for the legal process’ – families are being let down by the State

Within seconds seven doctors and nurses have gathered around and he was rushed to a neonatal unit.

Recalling those moments 12 years on still makes his mother Claire O’Brien emotional.

The following day a doctor spoke to her and her partner Lloyd Kenny for about an hour. “The only part of the conversation I took away were the words ‘brain damage’,” Claire said.

Dylan’s parents questioned what went wrong and, according to Claire, they were told: “These things happen. It is no one’s fault.”

Except it was someone’s fault. As a result of negligence, Dylan has cerebral palsy and acquired epilepsy is unable to walk unaided and requires round the clock care and assistance.

Hospital records indicated there was a failure to monitor the foetal heart properly and a failure to discern or react to signs of foetal distress and hypoxia. Dylan was delivered far too late.

Four years later, in 2014, the High Court approved a €2m settlement after Waterford Regional Hospital apologised to the boy and his parents for devastating injuries which should not have happened.

The settlement was an interim one to pay for his care needs for the following three years, including selective dorsal rhizotomy to destroy problematic nerve roots in his spinal cord. The surgery took place in the US as it was unavailable in Ireland.

Since then, due to significant deficiencies in how such cases can be handled under Irish law, his parents have had to return to court twice more for further interim settlements and will need to do so again in 2025.

They and other parents in similar situations describe it as a stressful and gruelling process, preceded by up to a year of intense medical assessments each time. These involve experts hired on their behalf and experts representing the State Claims Agency (SCA). This is followed by negotiations between both sides to reach an agreement on an appropriate interim settlement. Often the experts on either side are very far apart on what is needed.

Medical negligence solicitor Joice Carthy of Augustus Cullen Law described these negotiations as “invariably hard-fought with very significant disagreement between the parties’ experts on what the plaintiff actually requires” for nursing care, occupational and other therapies, aids, appliances and technology items.

“It is hard to put into words how emotionally stressful it is,” said Claire. “All we were asking for was that our child who was injured be given what he should be given. Nothing outrageous. We were looking to give him a quality of life. But we encountered a fight at every turn. Fighting against that is just low in my opinion. I don’t know any other way to describe it.”

On each occasion, a settlement was reached when the matter went to trial or on the steps of the court.

The process isn’t supposed to be like this. However, for parents such as Claire, it is currently the least bad option available.

Up to 2010, the only way to settle a medical negligence claim was to accept a once-off lump sum payment in full and final settlement of the case. While this was adequate for many types of cases, it was not appropriate for most involving a catastrophic injury. One reason for this was the difficulty in predicting the injured person’s life expectancy.

An overly conservative prediction risked leaving the person facing the prospect of running out of funding for their care needs. Also there are often huge disparities in the predictions made.

For example, in Dylan’s case his parents opted against a lump sum when they went to court as there was a 20-year difference between the predictions made by their experts and those hired by the SCA.

A Judicial Working Group on Medical Negligence recommended the introduction of periodic payment orders (PPOs) in 2010. These had existed in the UK since the 1990s and involved rolling payments to be made to cover the cost of care without the need to continually return to court.

At the time, the government indicated the necessary legislation would be introduced soon and that in the meantime, as an alternative to lump sums, parties could agree to settle cases on an interim basis, with damages being paid out to cover periods of two or three years.

However, delays in introducing the legislation meant families have had to return to the court several times to secure interim payments since then, on each occasion having to endure a fresh round of assessments and negotiations.

When the legislation was finally enacted in October 2018, it proved to be so flawed most solicitors would not recommend PPOs to their clients. In fact, just six PPOs have been made to date.

The stumbling block was, and remains, the index used to ensure the value of payments is not eroded over time due to inflation.

The model introduced used the harmonised index of consumer prices based on the recommendation of an interdepartmental working group. Recommendations by the Judicial Working Group for an index linked to care worker earnings and changes in the costs of medical and assisted aids and appliances were ignored.

As carer’s wages increase at a significantly higher rate than the consumer price index, lawyers feared the value of awards would diminish over time and would not be sufficient to cover their clients’ care. “At the end of say three decades the plaintiff may only be provided with funds to pay for approximately a half to two-thirds of the care needed and assessed when the PPO award was made,” said Ms Carthy.

The same mistake was made in the UK in the 1990s when the consumer price index was also adopted only for it to be ditched in favour of a more suitable index following a series of legal challenges.

Just why the wrong option was taken in 2018 in Ireland given the experience in the UK is unclear.

The actuarial calculations relied upon have never been released.

By November 2019, just 13 months after its adoption, the PPO legislation was described as “a dead letter” by a High Court judge.

Ms Justice Deirdre Murphy said it was clear no competent financial expert would recommend a PPO linked to the harmonised index of consumer prices.

Since then the situation remains unchanged.

This week the Department of Justice said another interdepartmental group is to be set up to advise on a new indexation rate.

However, current legislation does not allow Justice Minister Helen McEntee to substitute an alternative index until October of next year.

The department said she was seeking to get around the problem by amending the legislation and the changes would be published in the second quarter of the year.

In the meantime, families will have to continue to endure the process described by Claire and other parents.

In a statement, the SCA insisted it takes every step it can to ensure litigation is handled sensitively and that, wherever possible, does not add to the considerable distress already suffered by affected individuals and their families.

It also insisted it uses mediation wherever possible and places a high priority on treating families who have made claims with dignity and compassion.

But for Claire and other mothers, such as Colleen Worthington, the situation can’t be rectified quickly enough.

Colleen’s daughter Skye (10) has cerebral palsy after suffering brain damage during her birth. She cannot walk, sit unaided or speak and can only communicate with the help of special eye-gaze technology.

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 that if Skye had been delivered 15 minutes earlier, she would not have been injured.

To date, the court has approved three interim payments totalling €8m for her care. A further assessment is due in 2029.

According to Colleen, on the last occasion in 2020, they considered accepting a lump sum, so weary were they of the repeated barrage of assessments and negotiations.

“The legal process can be very time consuming, very wearing. It beats you down. We thought, ‘let’s just be done with this, let’s just finish it and get the courts out of our lives,” she said.

However, when huge disparities emerged between experts on both sides regarding life expectancy, they opted for a further interim settlement.

“There was that fear that money would eventually run out for nursing care,” she said.

Skye’s care needs are great and it is easy to see where the money from the settlements goes. Carers are required to help her with her meals and transfer her from place to place, as it is difficult for one person to do it on their own. She cannot be left in a room on her own due to the fear she may cough and choke. The equipment required in the home is niche and therefore expensive.

Colleen gave the example of a special chair used for Skye’s postural management. “It looks like it is a bog standard chair, but it costs €8,000,” she said.

Skye needs a special air mattress to avoid pressure wounds because she can’t turn herself and has to get an hour of physiotherapy before she gets up in the morning.

“The funds we want are to help Skye reach her full potential. That is all we want the money for. Nothing else,” she said. “When you have a medically complex loved one, it is exhausting. Skye’s needs are 24/7, so you don’t have the energy to be fighting the legal process and everything is questioned.”

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