Mrs Leyden said it was heartbreaking watching her son deteriorate and her daughter die.
She had witnessed Tony ''clench his fists beside his head and scream as loud as he can, ''I want to die. I don't want to be here''.
She visits him three times a week and has praise for the team of doctors and nurses who provide care but fears her son is not getting the specialised care he needs.
''There are so many more neurological sufferers out there who need care.''
''I wait in hope, but it will be too late for my family.''
Auckland Hospital associate professor of neurology Dr Richard Roxburgh said it was not uncommon for someone with Huntington's to be in a mental health unit but ''it's very unusual for someone to be in an acute unit for such a long time''.
''That tells us that this system isn't working because it has only happened here in Auckland on one occasion with the hundreds and hundreds of people we have.''
In Auckland, the majority of Huntington's people were supported by an outreach service either in residential facilities, private hospitals or at home with wraparound services provided by dedicated psychiatrists and medical people familiar with the disease.
Huntington's Disease Association Auckland manager Jo Dysart said it looked after about 900 people while those with the mental health aspects of Huntington's got support from the Huntington's regional service which sits under mental health.
Mental health ''is part and parcel of Huntington's disease and that is the reason we have a service under mental health so people don't end up in a mental health unit for a long periods of time''.
''We don't need a mental health unit specific for Huntington's what we need is a neurological assessment facility.''
Bay of Plenty District Health Board Mental Health clinical director Dr Sue Mackersey
said Mr Leyden had been nursed for much of his admission in the intensive patient care area of the mental health facility.
Due to his high needs and distress, his placements at several aged care facilities were not successful and there was no other place able to provide his specific high and complex needs, she said.
The health board approached Amaryllis House (a Huntington's Disease residential service in Wellington) and they did consider accepting Mr Leyden but the distance from Tauranga made this impractical.
Mr Leyden's care was provided by specialist clinicians from different disciplines, she said.
''The management of behavioural issues associated with neuropsychiatric disorders such as Huntington's is part of the scope of the specialist old age psychiatry practice.''
New Zealand Aged Care Association chief executive Simon Wallace said its facilities were not staffed, funded or sufficiently resourced to manage people at the acute end of neurological disorders -but rest homes often looked after people with neurological disorders including Huntington's disease.
Generally, rest homes can manage a resident with these diagnoses but if the behaviour was violent, then alternative care in a hospital would usually be needed, he said.
''Huntington's is very difficult and complex to manage...mental health units are skilled at managing people with behavioural issues.''
World Health Organisation communications officer Alison Brunier said in its view only people with a mental health condition should be admitted to a mental health unit.
Huntington's Disease Associations of New Zealand Wellington support nurse Jeanette Wiggins said often people did not know how to manage Huntington's very well ''and there are all sorts of things you can do to make people more manageable''.
''We have people in Amaryllis House that have rages but we can manage that with medication and we have one patient that refuses medication but we can still manage him.''
