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Autumn 2005

Is Management hunting the Huntington's Service?

The staff of the Huntington’s disease service in the Department of Psychiatry at the Launceston General Hospital have to cope in a world that can get very, very bleak. These HACSU members assist people and their families affected by a terribly tragic disease.

Huntingtons Disease is very cruel, and (eventually) fatal. It is an inherited, degenerative neurological disorder.

The children of an affected person have a 50% chance of inheriting the disease.

Importantly, people 'at risk' of the disease know the symptoms and have seen the disorder's impact on their family. They often go through tremendous mental agony knowing that there is a possibility that this is their future. Usually, the onset of symptoms falls somewhere between the mid 30s and mid 40s.

Common symptoms of the disease affect physical, cognitive and emotional abilities. It is significant that this group has an alarming suicide rate.

People in the N/NE/NW affected by HD and their families (who are often under great strain), have in the past been able to access services through the HD service and from Specialist Clinics via the workers based at the LGH.

You would think this very efficient service of 1.5 fte. staff covering the North West, North and North East would be treated with great respect and that such an important service would be well resourced. But who would be so foolish to think that?

In fact, the staff at the HD service would be foolish not to think that they are being hunted or at least stalked.

The service is now in the process of the 3rd management review and the word in the corridors is some now regard people with HD as 'bed blockers'. It appears that service is to be relocated out of the hospital and hived off to Disability Services.

In a recent interview, staff expressed real concerns about rumoured changes, although as the staff freely admitted "...we don't really know for sure what is going to happen because nobody has been brought us into any proper discussions."

"We are a highly specialized staff. There have been three reviews so far but we have hardly ever been consulted, let alone included as regular members of review discussions."

"There have been a couple of window dressing meetings. But basically there have been three reviews and not one of us have sat in on any of the discussions."

"On top of this there have been several reports produced. But we have never been allowed to see the original or other summaries."

"We think in the first review the consultant actually praised the work in the Northwest, North and said that the service was working well and recommended extra resources and internal overdue changes take place. But we were never given a copy of the report and it was never released."

"In the latest review, where there has been several meetings to which we have not been invited, we have asked for the terms of reference.
But we have been told "They haven't been done yet".

"Again, as the practitioners, we look like being bypassed."

"We are not saying we should be the ones who decide how everything goes, but we should have input and we should be properly
informed."

"We don't think, as the practitioners, that a move into disability services will work. "

"Based here at the LGH, if we get a client with depression and a suicide risk, we can get them professional assistance rapidly with the relationships we have here."

"There is no cure for this disease. It is a chronic, fatal illness. People affected need access to drugs used for psychiatric patients and we are able to get them here."

"We have really good access here to psychiatrists, as well as dieticians and other health professionals."

"People who are 'at risk' of inheriting the disorder often contact for specialist information and support.

They need to talk over their concerns in a safe, confidential environment with people who know their background and respect their concerns."

"You need specialist clinical knowledge."

"Because of the nature of the disease people 'at risk' need people who are professionally aware and understand the stresses and
strains that people and families are under."

"This team has worked well as a team, and it has worked with the structure and location that we have."

"But our real fear is once the service is immersed into general Disability Services, the real specialist knowledge and skills that are needed to help people with this disease will be lost."

"When it's all boiled down we don't think people are making decisions which are in the best interests of clients if they don't speak with the people who are 'at the coal face'."

"How can these reviews possibly find out what clients need without understanding how the service has evolved to meet the flexible needs of families dealing with this extremely complex disorder?"

It's a good question.