Woman settles case over delayed Huntington's diagnosis

A woman in her 60s has settled her legal action against the Health Service Executive (HSE) and a doctor for €142,000, following a significant delay in her diagnosis of Huntington's disease. University Hospital Galway has issued an apology for deficiencies in care that contributed to the delayed diagnosis of the rare genetic condition.

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University Hospital Galway apologised for deficiencies in care which led to the delayed diagnosis of the woman now in her 60s

The woman's father died without knowing he had the same disease, and it is believed that 26 other family members may also be affected. Her daughter told the High Court that her family endured a "war with the health system" simply to have her mother's condition recognized. She stated that her mother lost over six years of her life being told her symptoms were psychological, while her grandfather died unaware of his illness.

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our "war with the health system" just to be heard.

"Our family lost years we can never get back and paid financially and emotionally for a legal process to establish facts that the HSE's own records had already documented," the daughter said. She emphasized that their legal action was taken to prevent other families from suffering similar experiences. The daughter highlighted that the HSE's own clinicians had repeatedly recommended in writing that the family be informed.

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Our family lost years we can never get back and paid financially and emotionally for a legal process to establish facts that the HSE's own records had already documented.

The daughter criticized the systemic failures, pointing out the absence of a national care pathway for Huntington's patients, a lack of a shared record system across hospitals, and no clear plan for patient and family support post-diagnosis. She described the situation not as an unfortunate diagnosis, but as "a diagnosis the health service already had the means to make years earlier and chose because of a total absence of a care pathway not to communicate."

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We did this to ensure that no other family will have to suffer what we have suffered.