Policies and Procedures

Well we made our trek to the Milwaukee VA yesterday to get some help in getting Kevin’s pain under control.  It was to make up for the appointment we missed last week when Kevin ended up in the ER instead.  The appointment didn’t go as well as we had hoped.  Right out of the gate it seemed like the doctor had an attitude to us and was bothered to deal with us.  Kevin is in a wheelchair writhing in pain and the doctor shows no compassion.  Says “so I see you were in the ER last week”.  Yes, so what are you going to do about it? I thought to myself.  The doctor, who is Kevin’s primary care doctor, says, “I don’t know what I can do for you…I am not a pain specialist…the Pain Clinic would know more”  So Kevin asks the doctor to call the pain clinic.  And the doctor says “I can’t do that, I have to put a note in the system”.  We ask that he put the note in the system then.  But it wasn’t going to help us with our immediate problem of Kevin suffering in severe pain. 

See with the VA there are A LOT of policies and procedures.  In Kevin’s case, the Pain Clinic is the one that prescribes meds that work with the nervous system to alleviate nerve pain.  And there are procedures that need to be followed.  They have to try drugs on a list and keep going through that list in a specific order until they find one that works. So Kevin has run through the trials of Neurontin (Gabapentin), Topiramate (Topamax) and now Venlafaxine (Effexor) just to name a few.  And the trials aren’t for a few weeks.  Well unless you have a severe reaction to it like Kevin did with Topiramate, then the trial of the drug is stopped.  The doctors will put you on a low dosage and you try that for a few weeks, then they titrate you up in dosage.  So the trials of a drug that are having no positive affects on you could last for months.  In the meantime, Kevin is suffering with extreme pain.  But the pain clinic doesn’t prescribe pain meds (narcotics).  So what is a patient supposed to do while they are in a trial of a med prescribed by the Pain Clinic that has no positive affects?  According to the VA, go to your primary care doctor for pain meds.  So that is what we did, went to the primary care doctor to get more pain meds and we get the ” I don’t know what to do, I am not a pain specialist”.  Vicious circle.

In frustration, my water works start and I lose it with the doctor.  Kevin is suffering in pain stuck in the middle of this pissing match between the pain clinic and the primary care doctor of how to treat him.  The primary care did cave and prescribed more pain meds for Kevin.  They put him back on Fentanyl patches.  He was on them before he got his nerve stimulator implant.  And he was weaned off them by the pain clinic before his implant surgery.  Fentanyl is a nasty drug to get weaned off of.  It is VERY difficult to do.  Fentanyl patches are prescribed to people in Hospice.  So it is a double edged sword.  Kevin gets some relief from the Fentanyl, but we don’t want him on it.  And I am sure when we go to his next Pain Clinic appointment in March they will be less than thrilled that Kevin is back on them.  But what are we supposed to do.  Kevin can't live like he is living.  ER trips were becoming more frequent.  The pain outbreaks were getting more severe.  The RSD has spread to his arm and the doctors don’t have any sense of urgency to work on a resolution.  It is sick and inhumane, to let people suffer all because of policy and procedures.