‘My mother had Huntington’s disease, her brothers and sisters also had HD. I have cousins who passed away with it’

State has no specialist nurses or dedicated clinics for sufferers of condition

A Department of Health spokeswoman said “Waiting times are often unacceptably long”

A Department of Health spokeswoman said “Waiting times are often unacceptably long”

 

According to the Huntington’s Disease Association of Ireland there are about 700 people with the condition in the State and a further 3,000 at risk. There are no specialist nurses or dedicated clinics for sufferers of the disease.

Huntington’s disease (HD) is a rare brain disease and one of the most severe progressive neurological conditions.

Patricia Towey, the assocations’s information and services co-ordinator said: “Neurology services in general are severely lacking in Ireland. There are long waiting lists for a neurologist. Not every neurologist has a multidisciplinary team attached to their services. We have one of the lowest ratios of consultant neurologists in Europe.

“This lack of investment and resources for neurology services has a greater impact on patients with less prevalent conditions. For example, there are no dedicated clinics or Huntington’s disease nurse specialists in Ireland.

“In Northern Ireland and elsewhere the Huntington’s nurse specialist works as part of a multidisciplinary team alongside neurology and genetic services.

“There’s a huge need for Huntington’s service improvement in Ireland and Northern Ireland in order to progress research and advance standards of care.”

Commenting on the situation, a Department of Health spokeswoman said: “Waiting times are often unacceptably long, and the department is conscious of the impact of this on people’s lives. Reducing waiting times for the longest-waiting patients is a key priority.

“The National Clinical Programme for Neurology’s model-of-care document recommends an increase in the number of consultant neurologists, nurse specialists, including clinical nurse specialists, and other healthcare professionals, which would address waiting time issues.

“The programme also proposed implementation of these recommendations over a period of five years. This will significantly improve the access for all neurology patients.

“The model of care was launched by the director general of the HSE on September 27th, 2016 and the HSE is now working towards its implementation.”