I a forwarding this at the request of Joy Graham
who has her very capable hands full at the moment.

Dennis.
----------
> Date: Sunday, May 04, 1997 21:51:41
> From: Bob & Joy Graham
> To: Dennis Greene
> Subject: re: safe hospitalisation
>
> Dennis could you please pass this on to the List on my behalf.
> Thanks
> Joy Graham
>
> For those who asked for it, here is part of the information which we have,
> in the past, provided to our West Aust. members on Safe Hospitalisation...
> I heard about this document from the care list.   Dr Mills,  was happy to
> let me use it, so I am sure he won't mind it going on the List.
>
> Hello Mitchell, and how are you?
>
> SAFE HOSPITALISATION FOR PARKINSON'S PATIENTS
> By Dr Mitchell Mills
>
> Dr Mitchell Mills is well qualified to write on the problems of the
> hospitalised Parkinson patient.  He is a retired thoracic surgeon and he
is
> the Carepartner for his wife who has had PD   for  fifteen years.  His
> interest in the problems of hospitalised Parkinson's patients began during
> his surgical practice when he realised that Parkinson's patients were
> expected to "forget about" their disease when hospitalised for another
> problem.  He says that whilst this was simply due to ignorance of the
> disease, time pressures and under staffing, such a situation is
> unacceptable, given that it can lead to devastating consequences and even
> death.   Both Dr Mills and his wife are active in the American Parkinson's
> Disease Association.   This article was sent to me via the Internet.  Ed.
>
> All hospitalised patients are at risk for medical injury.  This risk is
> probably increased as nursing staff are reduced to save money and as
> quality of care is considered less important than the cost of care.   For
> Parkinson's patients, the risk if further increased because they are more
> dependent on a high quality of care.  They have an underlying, chronic,
> neurological disease that increases both the difficulty of their care and
> the chance of complications.
>
> Consider the following facts:
>
> 1. The physician who usually manages your Parkinson's may not be available
> in the hospital in which you enter.
>
> 2. The physicians whom you encounter may not be at all knowledgeable about
> Parkinson's disease.
>
> 3. The nursing staff on your hospital ward is unlikely to have much
> knowledge or experience about Parkinson's disease.  Even worse, because
the
> nurses are overworked, in a hurry and focused on other kinds of problems,
> they will probably not be motivated to learn about the disease in time to
> benefit your care.  And, still worse, when complications develop due to
> improper management of Parkinson's disease, they will probably blame you
> for being "uncooperative".
>
> 4. You may be put on a "drug holiday" because your medication program
> interferes with house rules about the administration of medications or
> because you are unable to take oral medications due to the condition for
> which you were hospitalised.  As you are well aware, this, added to the
> stress of your illness, can rapidly result in you being a very different
> patient than you were when you entered the hospital, now under the care of
> persons unable to recognise and deal with that.  Again, you may be
> considered "uncooperative".
>
> 5. Certain drugs given commonly to hospitalised patients for symptom
> relief may be need to be reduced or omitted in Parkinson's disease.  Your
> doctors and nurses may be unaware of this.
>
> 6. You can expect some mental changes while hospitalised which may
> blunt your ability to care for your Parkinson's disease as well as you
> usually do.
>
> 7. You may be discharged from the hospital too quickly due to insurance
> regulations.  This may not allow time enough for you to recover the same
> level of independent living you enjoyed when you entered the hospital.  It
> also may not allow enough time for helpful consultations such as physical
> therapy, occupational therapy, etc.
>
> As frightening as these facts are, they are certainly not impossible to
> overcome!  The following are some guidelines for doing just that.
>
> * Arrange for a family member to be present in your room at least 16 hours
> each
> day.  In some instances, this may need to be 24 hours a day.  PD is the
> perfect excuse to get around those usual "visiting hours."  A cot to allow
> a family member to sleep in the room can usually be made available.
> Intensive care wards make these sorts of arrangements more difficult but
> not impossible.
>
> *  Present your medication program, in writing, on arrival.  Ask that it
be
> placed
> on the chart and copied by a doctor into the "doctors orders".  Ask the
> attending
> doctor in your case (the doctor under whose name you are admitted) to
order
> that
> you can have your medications at the bedside to be administered on time by
> you or your family member, keeping track of it on a bedside chart.  Insist
> that changes in the  dosages and/or timing of your medications be made
only
> for medical
> reasons, not for the convenience of the nursing unit.  Resist statements
to
> the
> effect that "it won't matter."  Ask that your medication program be
continued
> right up to the time of any planned anaesthesia and surgery, and that it
be
> resumed as quickly as possible thereafter.
>
> * Whenever possible, discuss your Parkinson's disease management with your
> doctors before you are hospitalised.  Be sure to ask how it impacts on the
> risks and
> results of treatment.  Arrange for your usual physician to consult with
your
> doctors and ask that he/she arrange for neurological care while you are
in the
> hospital.
>
> * Designate, in writing, a person to make treatment decisions for you if
you
> are
> unable to do so.  This person should be readily available during
> hospitalisation.
> Copies of your declaration should be given to your doctors and to the
charge
> nurse to be put on your chart.  You may add to your declaration how you
wish
> to
> be treated in case of a terminal illness.  This should include how you
feel
> about alternate routes of feeding (i.e. feeding tubes, intravenous
lines).
> You
> should, at least, discuss these matters with the person whom you designate
> as your
> alternate decision maker.
>
> *  Provide the charge nurse with a written summary about your Parkinson's
> disease 1
> including what happens if you are over or under medicated.  Stress what
> changes
> they are likely to observe if you are taken off medications.  Include your
> most troublesome problems present even when you are optimally medicated.
>
> *  Keep a bedside log (or have the family do so).  Take the names of all
> persons who
> care for you and record them in the log.
>
>
>
>