Issue 101, June 2008
Building Services Around Our HD Families
In Christchurch, our biggest drive since the forming of an HD committee back some 25 years ago, was the determination to open a house for our HD loved one to live in when home caring was no longer an option, or for respite care to give families time out.
This has been the driving force behind fundraising events for over 25 years now, and the dedication of our committee and members has been heart warming. This however was not going to be an easy task, with the Ministry reluctant to fund anything like this, and the ever increasing prices of real estate, here in Christchurch.
After working with this committee in trying to push our plight forward, and many discussions with health professionals, I came to the understanding and rethinking of, why group everyone together?
I feel we should be looking at each of our HD people as individuals, seeking the most appropriate housing or services for them, rather than trying to group them all together in one area or service.
Build the services around the individual, to enable them to maintain a dignified and caring environment to be supported in their living needs. This will take into account and include family dynamics and the support network that has already been put in place by husbands, wives, partners, children, family and extended families. Because, as you are all aware, Huntington's, is not a text book disease.
But rather an individual degenerative disease that presents itself in so many ways and can change pace very quickly without warning. This, therefore, shows the need for services and support to be both flexible and focused on the individual.
My own walk with HD is relatively new, compared to a lot of others within our Association, and throughout the country, so my energy levels have not been zapped. I have not yet come up against the many health professionals who just shake their heads and say there is no where for them to go, or that there is nothing that they can do.
I have written a report outlining the needs in Christchurch of our HD families, the lack of services and what we see as the needs of our people. This has been supported with letters from our families. This is only the start but we are starting to be heard and just maybe someone will listen.