Huntington's under spotlight in RTÉ show as families fear HSE recruitment freeze
Liam Carney as Joseph Martin, Michelle Fairley as Judge Hannah Martin, Richard Flood as Detective Theo Richter, and Acushla-Tara Kupe as Detective Sargent Diana Huia in 'The Gone'.
Families affected by devastating genetic condition Huntington’s disease are fearful the HSE recruitment ban will delay the hiring of Ireland’s first specialist nurses.
Two nursing positions were announced last year among a group of almost 30 specialists but now families are “very concerned” the plans could be put on pause.
Huntington’s Disease Ireland (HDI) spokeswoman Patricia Towey said when the announcement was made by Minister of State for Disability Anne Rabbitte, families had welcomed this.
The minister saw the nurses could help “overcome the misunderstanding and stigma associated with the disease over generations”, Ms Towey said.
However HDI and an advocate whose family is affected are unclear what happens now.
“Derek and many other families impacted by Huntington’s disease are very concerned that two specialist nursing posts announced in October 2022 and not yet recruited will fall under the recently extended HSE staff embargo,” she said.
Most European countries have dedicated clinics.
Derek, an advocate who asked that his surname not be used, said: “There is no joined-up service anywhere in this country.
"Instead families patch supports together.
“So they have to fight for the same thing for themselves all over again.
"In our family it is a late-onset condition.
"So you think of the young people knowing this, they are going to need mental health supports. But they don’t exist.”
Derek became aware of the condition last year.
“One of my siblings had just spent 10 years having issues and has been sent to one specialist after the other specialist.
"[They] were diagnosed with every neurological disease you can think of except Huntington’s,” he said.
“Eventually a neurologist did decide to do a Huntington’s test.”
His sibling “actually broke down in tears” with relief when genetic testing identified the condition.
“This is typical with Huntington’s,” he said.
“You get so depressed over the fact there are things wrong with you and you don’t know what they are.”
Fear of stigma around this disease featured yesterday in RTÉ drama for character Theo Richter.
The production team contacted HDI for information and used the group's website in the show.
It is “an exceptionally cruel disease”, Derek explained.
“You are fully aware of it, and eventually you do start losing your compos mentis but you still know what you are doing.”
This has all made Derek re-assess his father’s life; a man who spent decades in a nursing home with symptoms he now realises were probably caused by Huntington’s.
His own test was negative but he advocates for his relatives.
“It affects families,” he said.
“Obviously when the Huntington’s diagnosis came, it changed everything instantly.”
He urged people newly diagnosed to contact HDI.
“We rang Patricia and she said ‘it’s OK, I’ll explain everything’ and that’s what she did,” he said.
“That was an absolute godsend, because without Patricia we wouldn’t have a clue.”
The HSE has previously said its clinical care programme is working on a pathway of care for Huntington’s disease.
