A High Court judge has said a national care pathway to help those diagnosed with Huntington’s disease, the rare genetic condition, is urgently required.Judge Paul Coffey made his comments after hearing in court what one family described as a “war with the health system”.The family said there was a delay in diagnosing the mother with the disease. Meanwhile, her father died never knowing he had the condition, while 26 members of the extended family are potentially affected.The family’s case came to light as the mother, who is in her 60s, settled an action against the HSE and a doctor in relation to her disease diagnosis for €142,000.Neither the woman nor her family can be identified by order of the court. The case was settled after mediation.A letter of apology from University Hospital Galway was read to the court, in which it said it wanted to apologise unreservedly for “deficiencies in care” which led to the delay of the woman’s diagnosis.“We do not underestimate the distress this has caused you and the adverse effect this had on your relationship with your family,” the letter, signed by hospital general manager Chris Kane, said.The woman’s daughter told the court that three generations – 26 members – of her family are potentially affected by the Huntington’s disease diagnosis.“My mum lost over six years of her life being told her disease was psychological,” she told the judge. “My grandfather lost his life never knowing what took it from him. “Our family lost years we can never get back and paid financially and emotionally for a legal process to establish fact that the HSE’s own records had already documented.“We did this to ensure that no other family will have to suffer what we have suffered.”She added what was required was “nothing more than the HSE doing what its own clinicians repeatedly recommended in writing: tell the family”.The judge, who praised the woman’s daughter, said part of the case related to the failure of the State to have a clear pathway in place for those diagnosed with the disease.The judge said it was shameful that only one dedicated nurse in the entire country deals with Huntington’s disease. The judge said a care pathway for Huntington’s disease patients that was first proposed in 2022 but has not been implemented by the HSE is “urgently required”.The woman’s daughter told the court the case did not happen because any single person failed her mother and grandfather.Instead, it was because the system had no pathway capable of connecting a positive genetic result to the family who needed to know it.There was also no shared record system capable of joining two patients file across a single hospital and no plan for what should happen to a patient and their family after diagnosis.“Two symptomatic people were impacted by those failures, my grandfather who died not knowing his diagnosis and my mother who spent several years being told her disease was in her head,” she said.