Families hope minister will deliver Huntington’s disease rehab teams

Families hope minister will deliver Huntington’s disease rehab teams

Mary Mulcahy from Ballincollig in Cork meeting Disabilities Minister Anne Rabbitte at the Huntington's Disease Association of Ireland AGM in Ballinasloe. Picture: Andrew Downes

Families living with Huntington’s disease are hopeful that Disabilities Minister Anne Rabbitte will deliver on their demands for new specialist rehabilitation teams to treat the condition.

Ms Rabbitte attended the Huntington’s Disease Association of Ireland annual general meeting over the weekend, the first time a minister has attended.

Huntington’s disease is a progressive condition affecting the nervous system, which can affect movement, cognition, and mental health, with symptoms often only appearing in middle age.

About 1,000 people in Ireland are living with the disease at any one time.

Mary Mulcahy’s husband was diagnosed 13 years ago and the family faces travelling from Ballincollig to Beaumont Hospital in Dublin for neurological support.

“I worked as a nurse for many years and now in my retirement, I am a carer,” she said.

Ms Mulcahy is aware of other families in the region facing similar problems, including one travelling from Schull in West Cork to Dublin.

“At the moment, you have people from all over travelling to Dublin,” she said.

My husband had a late onset and while that is very tough at times, it really breaks my heart to see younger people living with the disease. 

"Trying to care for their partner, as well as parent their young children, without the right services is too much.”

People with the condition need neurological support and while this is available, Ms Mulcahy would like to see a dedicated specialist service, including a Huntington’s disease specialist nurse.

She said many people rely on community physiotherapy services, but they may not be fully aware of the neurological and cognitive impacts caused by the disease. “Neuropsychology is an important part of treatment,” she said.

“This is because of the impact Huntington’s has, first of all on the person themselves but also on their family.”

Ms Mulcahy said she is aware the disease has a lower profile here than some other, more common neurological conditions, but said any change in support would immediately benefit families. She said: 

It was lovely to meet Minister Rabbitte.

“I hope she will have the support of her colleagues to follow through on her promise to improve community neurorehabilitation services for everyone living with complex neurological illness.”

A spokeswoman for the patient advocacy group said they welcomed Ms Rabbitte’s attendance.

“She acknowledged the vital need for Huntington’s disease specialist support in the community to overcome the misunderstanding and stigma associated with the disease over generations,” she said.

“The minister also confirmed her priority to fully resource at least four of the seven required community neurorehabilitation teams so that people living with neurological conditions in the east, south, and west have a more comprehensive service.”

The spokeswoman said families face a dearth of services, even when compared to Scotland, a similar-sized country.

The Scottish health service has 10 regional multidisciplinary clinics, with a team of 19 Huntington’s disease specialists offering outreach support across the country.

Ms Rabbitte’s office was contacted for comment.

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