5 minute read
A woman in her 60s has settled a High Court action against the Health Service Executive and a doctor for €142,000 following a delay in diagnosing her with Huntington’s disease.
Neither our client nor members of her family can be identified by order of the court.
Joice Carthy of Augustus Cullen Law was instructed by the family.
Huntington’s disease is an inherited and progressive condition that can affect a person’s movement, thinking and mental health. A person who carries the altered gene has a 50% chance of passing it to each of their children.
Our client experienced symptoms for almost six years after her father’s positive diagnosis before receiving the correct diagnosis. During this time, she was repeatedly told that her condition was psychological.
Her father also had Huntington’s disease but died without ever being informed of his diagnosis. Despite our client and her father attending the same hospital department and GP practice, the relevant information contained within their medical records was not connected or communicated to the family.
The family maintained that the health service had the information necessary to make the diagnosis years earlier. However, there was no effective system for linking the records of affected family members or ensuring that a positive genetic result was appropriately communicated.
Because Huntington’s disease is inherited, the consequences of the delayed diagnosis extended far beyond our client.
The High Court heard that 26 members of the extended family across three generations were potentially affected by the genetic risk. This included our client’s father, siblings, childrennieces and nephews.
Our client’s daughter described the family’s experience as a prolonged struggle with the health system. She explained that the family had pursued the case not only to establish what had happened, but to help prevent another family from experiencing the same failures.
She told the court:
“We did this to ensure that no other family will have to suffer what we have suffered.”
The family highlighted the considerable emotional and financial impact of having to pursue legal proceedings to establish facts that were already documented within the HSE’s own records.
As part of the settlement, a letter of apology from University Hospital Galway was read to the High Court.
The hospital apologised unreservedly for deficiencies in the care provided which had led to the delay in diagnosing our client with Huntington’s disease. It also acknowledged the distress caused to her and the adverse effect the delay had on her relationships with members of her family.
The case was resolved following mediation for €142,000.
Although financial compensation cannot restore the years lost by our client and her family, the settlement acknowledges the significant impact the delayed diagnosis had on our client’s life.
It also brought public attention to the wider systemic problems encountered by people affected by Huntington’s disease and their families.
When the settlement was brought before the High Court, Mr Justice Paul Coffey praised our client’s daughter for the manner in which she had advocated for her family.
The judge said that a national care pathway for people diagnosed with Huntington’s disease was urgently required. He described it as shameful that there was only one dedicated Huntington’s disease nurse serving the entire country.
A proposed national pathway was first developed in 2022 but had not been implemented by the HSE when the case came before the court.
Commenting following the conclusion of the case, Joice Carthy said:
“This case illustrates the profound impact that a delayed diagnosis of an inherited condition can have, not only on the patient but on an entire family and indeed potentially on future generations if the diagnosis is not known.
“Our client and her family showed great determination in pursuing answers and highlighting the systemic failures that affected them. We hope the hospital’s apology, the settlement and the comments made by Mr Justice Coffey will contribute to the introduction of the national care pathway that families affected by Huntington’s disease urgently need.”
A delayed diagnosis can prevent a patient from accessing appropriate treatment, specialist support and information about how a condition may affect other members of their family.
If you believe that a medical condition should have been diagnosed sooner, our experienced medical negligence solicitors can review the circumstances and advise you on your options.
Contact Us to arrange an initial consultation with a solicitor or visit Medical Negligence Claims to learn more about our services.
In contentious business, a solicitor may not calculate fees or other charges as a percentage or proportion of any award or settlement.
Certain details have been omitted to protect the privacy of our client and her family.
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