Friends on PARKINSN,
A Very Long Post from a Country Town
This is our first posting here. We will be unable to respond quickly to
comments you may make about the following story because we have no Internet
provider in this area so my connection is via long distance phone calls to
our state capital city. And this costs.
An introduction to the following letter by my wife which she FAX'd yesterday
to our local medical centre is in order. We live in a small country town on
the western coast of Australia. About 425 km north of the state capital, our
town has about 27,000 people plus perhaps another 20,000 in scattered small
townships and on the land within a radius of ,say, 200km. To drive to the
capital takes 4.5 hours, to fly about 1 hour by recently reduced services,
6 hours by bus, but impossible by train because passenger services were
cancelled about 20 years ago. Our town is the largest in the 80 % of the
state north of the capital. Our state has an area of 2,527,621 square km.
Compare this area with 244,013 square km for the UK and 692,405 square km
for Texas.
Situated on the coast at 28.8 degrees south latitude our town has mild
winters and very hot summers. A good place to retire? Our town boasts 28
doctors, including 2 specialists, a gynaecologist and a urologist. There are
a few doctors in the surrounding townships. There are two hospitals, one
public, one private. At the public hospital out of hours emergencies are
handled by doctors rostered on standby and for anaesthetist work. We live in
this town because I volunteered for a temporary position my company had open
over here shortly after my wife Pam was diagnosed with PD. We may not have
moved except that the specialist back home (about 4,500km away on the other
side of the country) said to Pam "if you are planning to do anything do it
sooner rather than later". So we have treated my temporary re-location as
something of a pre-retirement working holiday. However we have no wish to,
nor would we recommend to anyone with a chronic condition, to retire in a
town like this even though the weather is comfortable and the locals
friendly, as they are here. We will return within a couple of years to where
it is cold and damp and specialist medical attention is readily available.
Pam was diagnosed with PD at age 48 with idiopathic PD affecting the right
side of the body. During the previous 10 years or so Pam often fell for no
apparent reason and was sometimes treated for a stiff aching shoulder
categorised as "spondylitis". When she was 19/20 she suffered from RSI
induced by operating a mechanical accounting machine. Her father died of
lung cancer at the age of 43. Her maternal grandfather had a leg which shook
uncontrollably at times, amusing the family but was never diagnosed. Our son,
now 28, contracted diabetes when aged 23. In her father's kin one second
cousin is known to have PD.
Pam's present medication is:
Morning - one Sinemet 100/25
- one & a half Sinemet CR 200/50
- one Parlodel 10mg
- Premarin 0.625 (HRT)
Midday - half Sinemet CR 200/50
- one Parlodel 5 mg
Evening - one & a half Sinemet CR 200/50
- one Parlodel 5 mg
Bedtime - 100mg Prothiaden (anti-depressant)
Before each meal - 10mg Domperidone (anti-sickness)
Pam has attempted to start a local self-help group but has largely met with
indifference from medical professionals and patients.
The letter Pam mentions below is Jerry Finch's letter "Dear Doctor" placed
on L-PARKINSN 28 Feb 1995. The "PAT Scheme" is a State Government transport
and accommodation assistance scheme for those requiring medical attention in
the city, "Medicare levy" is the Federal Government tax on income to fund
health benefits, "Health Care Card" is a means tested card for retirees and
pensioners. I have disguised the name of Pam's doctor as well as the sum I
pay as Medicare levy as that would indicate that I earn a very good salary
plus taxable benefits. The point of Pam's letter is not about the cost of
her medication or treatment but that she was unable to see a doctor briefly
in order to relieve her debilitating symptoms.
Pam's FAX
Geraldton Medical Centre
Shenton Street
GERALDTON W A 6530
TO WHOM IT MAY CONCERN
It would be appreciated if someone could advise me what the situation is
regarding seeing a doctor in this town. Does one have to know that they
are going to be ill at least a week in advance so an appropriate appointment
can be made to see their doctor? Maybe I have the idea wrong and if you
attend a 'medical centre' you take whichever doctor is available at the time
you need one. Not that I am complaining about any of the doctors at your
centre as I have only seen one other doctor besides "my own", and he was
very nice and most helpful when at Christmas time I urgently needed some
advice and treatment of my ongoing problem and Dr ....... was away.
I am sure I am not the only person in this town who has the need to see
their doctor when they have a problem with their medication. If I am not
making myself clear I will spell out my situation.
Yesterday, as on a number of other occasions I rang your medical centre to
make an appointment to see Dr ......... to be told that I couldn't get an
appointment with him for a week. This is the longest I have had to wait,
mostly I can get in in two or three days. Even that is not the answer.
Since the end of January I have had problems with my medication, but when I
ring up for an appointment I am told that I can't get an appointment that
day or the next so I have decided that maybe I would just see what happened
as the problem may have adjusted itself and then I would feel a fool when I
front up to the doctor and say "well I had this problem a couple of days ago
but it is fixed now". He can't help me then because the problem has gone
away, only to return a few days later and then I am back where I started
from.
Last year I had a similar problem with not being able to keep my medication
down and I was prescribed some tablets which relieved the situation. However
these tablets are prescribed on a once only prescription with no repeats. I
have been taking these tablets but have finally run out of them and no matter
what I do at the moment I cannot keep my medication down. Without the
medication I am reduced to a shaking heap, which in my case I am going to
have to put up with for at least another week and longer because I will
have to gradually build up the medication to the stage where it "works"
again.
Just taking the tablets to keep the other tablets may not be the answer
anyway, I am not a doctor, so I may be doing the wrong thing anyway.
I need to go to a Neurologist from time to time and we all know that
specialists are not easy to get in to see. I rang the specialist in Perth
on Wednesday to see if there was any chance that I could have been able to
see him next week as I am able to get a lift down to Perth. Unfortunately I
am unable to get an appointment until the 8th April, but even if I could as
I could not get to see Dr .......... until next Thursday how am I to get the
referral that Medicare requires one to have before a person sees the
specialist.
Bit of a catch 22 situation isn't it?
Without looking up my file just reading this letter would not enlighten you
to the fact that I have Parkinson's Disease, would it? With this disease it
is necessary to have one's own doctor otherwise when seeing another doctor
the first part of the consultation is spent explaining my "history". This
makes a short consultation become an extended one and so costs more money.
Besides that if the medical situation is as bad as it seems someone else
could be using the time.
I suppose I would have been able to get an emergency appointment, but what
is an emergency? Admittedly I am not writhing in pain, have limbs which are
broken, or spreading a disease around the town but to me this is an
emergency, and I can't get any assistance to relieve the situation. Maybe I
could stand in the middle of the mall and let my limbs shake uncontrollably
with a placard on my back saying "don't treat me like a leper as it is not
catching". It may not be catching but when one is shaking uncontrollably
you would be surprised at the way people stare at you and keep their
distance.
If I was writing this you wouldn't be able to read it as the paper would be
soaked and the ink run from the tears that are streaming down my face. Thank
goodness for computers.
I know this rambling can't get me an appointment, and why should it, I guess
it has helped me to get it off my chest. I have enclosed a modified version
of a letter which someone else has written but says it all. You have to
experience this illness to know how I am feeling, and I am not alone, how
many others with this or numerous other problems are in the same situation.
Until now I have put up a strong front to the world, I can handle anything,
I thought but you should see me now.
No doubt the antidepressant drugs will be prescribed as depression will again
be diagnosed. But it is the situation I find myself in through no fault of
my own that has caused the depression.
WHAT CAN BE DONE? NO DOUBT THE DOCTORS ARE RUN OFF THEIR FEET UP HERE OR THE
SITUATION WOULDN'T EXIST.
Geraldton is a great place to live and would offer a great lifestyle to
people from Perth etc who are retiring to have a long and relaxed retirement
but as we all know age brings medical problems and if the situation is not
rectified there is no point in anyone coming here.
The pat answer is 'we have the PAT Scheme'. Great if you are on a health
care card but if not, it costs a great deal of money to get to Perth with
accommodation as well as fares or petrol and wear and tear on the car. We
don't qualify for the Health Care card unfortunately but does one have to
spend numerous amounts of their earnings for medical attention. My husband
paid $xxx.yy Medicare levy last financial year and we are in private medical
fund also but all this money maybe spent on this and then more has to be
found for travel and accommodation to get to Perth.
My husband's job is here in Geraldton and I would like to stay here for as
long as we can but maybe the solution would be for us to separate and I go
and live in a big city where medical attention is readily available. Then
I would be a drain on society as the Government would have to pay me an
invalid pension as no one would employ me.
WHAT IS THE ANSWER ?????????????
Pam Matthews
56 Forden Street
MOUNT TARCOOLA
GERALDTON WA 6530
10 March 1995
The result of Pam's FAX.
Soon after sending her FAX, Pam was called by phone to advise her an
appointment was available to her mid-afternoon. By this time Pam was in a
distressed state and her caring doctor allowed her an hour of his valuable
time to unload herself. The doctor's time and Pam's distress would have been
saved if only the medical centre bureaucratic system had not seen Pam's call
for help as queue jumping. As Pam was leaving the establishment she heard one
of the office staff shouting into the phone "It doesn't matter which doctor
you wish to see you will have to wait 3 days!!!". In the world of business
customers are lost by such telephone etiquette but I suppose patients are not
really customers are they? I wonder what that caller's problem was and if he
or she was in pain or distress at the time? Perhaps it will have gone within
3 days so does not really matter.
Erwin
