From the Executive Officer:
Dear Friends
This is probably one of the longest editorials I have ever written for a newsletter so if you don't get to the end (!) may I take this opportunity now to wish you and your family a very joyous Christmas and a peaceful 2002.
I am putting pen to paper (no computer because I can write more easily this way) at about 6.30am on a Saturday morning - yes, I would rather be still asleep but my mind is racing. I am asking myself the question "What two issues affecting HD families in NSW concern me the most?" I may only choose two.
The first issue is the lack of suitable long-term nursing home accommodation for people with HD who are under the age of 60 years. This issue affects me personally as well as professionally because my sister, who recently turned 53, is in an aged care nursing home. For some years she was at Lidcombe Hospital and then she moved to Huntington Lodge at Lottie Stewart Hospital. But as she approached 50, we were asked to find alternative accommodation for her. Why? Because they needed the bed for younger people who could benefit from the specialised care at Huntington Lodge.
How could we deny someone else the same special care that my sister had received for so many years? Yet she was only 50 and still a very young wife, mother, daughter and sister. The room in an aged care facility with three other elderly ladies with dementia that she moved into after leaving Huntington Lodge, wasn't the right place for her. She really did still need the care, the activities, the stimulation and all that Huntington Lodge could offer. But there are only 17 beds at Huntington Lodge.
Reflecting on my own experience I often wonder - what standard of care are people aged under 60 receiving if they are not lucky enough to find a bed at Huntington Lodge?
At the aged care nursing home where my sister still lives, they are doing the best they can, but with fewer resources. They do not receive the extra funding that Huntington Lodge receives - the extra funding required to give young people with HD the quality of care that they deserve. And my sister is certainly not the only one in this situation. There are a number of other people with HD in the same nursing home - young people in a nursing home for the frail-aged. Some people with HD even find it difficult to get into an aged care nursing home because they are "too young". Without more facilities like Huntington Lodge to turn to, where do these people go?
All people with HD need a high standard of care regardless of their age and yet the government (no matter which party is in power) seems to think that high levels of care are only needed by the elderly. We need to lobby governments to make sure that more suitable long-term nursing home accommodation is found for younger people with HD so that they can have the highest possible quality of life.
The second issue that concerns me greatly is that at risk people in NSW can have the predictive test for HD without the comprehensive support and expertise of a genetic counsellor and geneticist. One of the major problems with this situation is that GPs and neurologists in private practice most often do not have a highly specialised knowledge of the predictive testing process and its potential ramifications. In this case, geneticists and genetic counsellors in the public system are often left to "pick up the pieces", so to speak, when private care and counselling is inadequate, ill informed or not offered at all.
As one of the authors of the international guidelines on predictive testing it distresses me that the NSW Department of Health does not implement them adequately.
The guidelines were developed by representatives from both the International Huntington Association (lay group) and the World Federation of Neurology Research Group on HD (professional group). Both of these groups accepted the guidelines and other organisations are now using them for predictive testing of other disorders.
I firmly believe that we have one of the best genetics services in the world here in NSW and that all requests for predictive testing should be referred to one of these services.
If this happens then we can be assured that everyone has access to a genetic counsellor and a geneticist and he or she can be assured the high level of professional and emotional support required during predictive testing.
As many of you already know, the predictive test is not a simple blood test. For some the result may not be positive or negative and there are many issues to be considered. Any test result will have an effect on both the at risk individual and other members of his/her family for the rest of their lives. I think this is best handled through a genetics service, not by a GP or neurologist and the article Adult Onset Neurological Disorders featured in this newsletter explains it extremely well.
Some people believe that educating GPs more about predictive testing through magazine and journal articles is the answer to the problem. I believe this is a totally inadequate solution. Just to illustrate my point, I recently asked to borrow a copy of Australian Family Physician from a GP, and the secretary advised me that the GP never reads it!
My personal hope and commitment for 2002 is that I can make some difference to these two issues. It will be 25 years next year since I became actively involved with the Association. We have come a long way, but we still have a long way to go.
May I again wish you and your family a very happy Christmas and a wonderful New Year.
In friendship
Robyn Kapp
