Print

Print


Lucy Hartley's story of her father's downward spiral and the lack of a
coordinated care plan is sounding all-too familiar.

It points out so many deficiencies in the health care service. These
situations arise in Austalia too.
It also points out the importance of the "team" approach in treating PWP.
Perhaps a protocol could be established for those who begin to experience
hallucinations. For example, at the first instance, and before they get out
of hand - a team meeting between the PWP, family, GP, neurologist,
psychiatrist and the HACC (Home and Community Care Team) so that an action
plan can be drawn up if and when the hallucinations and paranoia get out of
hand.

I have tried to make sense of the treatment of hallucinations - it is a
huge area. It does not help to read that Clozapine is the most useful drug
and yet this drug is not readily available to PWP in Australia!  The other
drugs like Risperidone and Olanzapine can both cause a worsening of PD
symptoms.

What really bothers me is the lack of communication between psychiatrists
and neurologists.  How can we get them talking and working as a team?

I am convinced that centres especially dedicated to the care and
rehabilitation of late stage parkinson's must surely be what we all should
be aiming for. Neurology wards in major hospitals are not equipped to deal
with paranoid and hallucinating PWP- so what happens - they get shunted off
to psychiatric wards where the staff generally know NOTHING about PD, and
often, the psychiatrists knowledge is limited too.  I am scared at the
reasoning which goes: if the PD meds are causing the hallucinations, etc,
then take the PWP off all meds. The result is a frozen PWP who can not
talk, eat, move.  The climb back to function is so slow and fraught with
all sorts of medical and nursing problems.

Local associations can help by agitating to "expose" the problem (I know
there is a risk of frightening people) and pooling ideas about how to
proceed.

On a bigger level - let's make sure the topic is well and truly on the
agenda at Conferences, Neurology meetings, in the many PD magazines.

I was pleased to see that the EPDA held a one-day conference focussing on
dementia, depression and psychosis in PD which ran alongside the V11
International Symposium in London in March this year.

Are there any reports of this meeting available.? Such a listing on the
List would be very useful.

My sympathy to all of you who are caring for family, friends and partners
who are going through this difficult stage.

Although I can't respond as frequently as I would like too (The Perth
Conference is looming soon) my thoughts are with you Lucy and ?Ron's great
friend who has taken him on board.  Keep batting!

Sincerely

Joy Graham