Lack of NI services means patients with Huntington's face postcode lottery
People with Huntington's disease in Northern Ireland face a postcode lottery when trying to access specialist care.
Some 118 people in the province live with the incurable hereditary condition.
However, only patients resident in two health trust areas - both of which cover greater Belfast - have access to Northern Ireland's only specialist nurse, according to The Detail website.
Sorcha McGuinness, chief executive of the Huntington's Disease Association Northern Ireland, said people in the advanced stages of the condition usually required 24-hour care.
Speaking to The Detail, Ms McGuinness added: "They won't be able to move or speak. Some people won't be able to swallow, so they'll be reliant on tube feeding. It's a very devastating disease."
Huntington's disease is an incurable brain condition. Patients have a life expectancy of 15 to 20 years after diagnosis.
The specialist nurse acts as a link for patients to use mental health and neurology services, GPs, social services, occupational therapy and speech and language, and also provides medical training to professionals involved in caring for people affected by the disease.
The nurse also reviews the medication a patient may have to take and advises GPs and pharmacists on their treatment.
According to The Detail, South Eastern Huntington's disease patients are referred to the Belfast Trust's specialist nurse, and the cost is covered by the Health and Social Care Board (HSCB).
However, patients living in the Western, Northern and Southern Health Trust areas have no access to a specialist nurse.
Father-of-two Mickey McNulty, from Gortin outside Omagh, inherited the disease from his late mother.
He said: "There is a nurse in the Belfast Trust and I don't think it's really fair that if you live west of the Bann you can't get the same facilities as everybody else.
"A nurse in the west would be of great benefit. It would give patients someone they could go to for medical advice who knows what they are going through."
Laura Clark (23), from Londonderry, is waiting to get tested for the disease, which her father has. She said: "I've got ready to hear 'You are all clear', but I'm not ready to hear 'You're not and you have Huntington's'."
Ms McGuinness insisted families were being "put at risk" because of inequalities in care.
"It's completely unacceptable that some patients haven't got access to treatment simply because of where they live," she said. "Everybody should have equal access to services.
"Even in the Belfast and South Eastern Trust, where services exist, there's a lot more that could be done."
The Northern, Southern and Western Trusts said they did not have a specialist nurse and had no plans to recruit one.
They added patients had access to local neurology services and could be referred to the Regional Genetics Centre in Belfast, which provides testing and counselling services.
The Northern Ireland Needs Assessment: Huntington's Disease, a report published in autumn of 2007, identified an urgent need for five co-ordinators in Northern Ireland.
The Department of Health and the HSCB said work was ongoing to improve care for patients with neurological conditions including Huntington's disease.
A spokesperson added: "The HSCB and the Public Health Agency have met recently with the Huntington's Disease Association Northern Ireland and will continue to engage with them over the coming months in relation to addressing these concerns through the modernisation of neurology services."