June 13, 2012

costs of inaction

Not too long ago, Canada announced that one of the places getting budget cuts was to pain clinics. Just the other night, I decided to look up this new "screw-you" to pain patients, and came across a new paper, entitled: "'I live this life in pain'; Canadians with Chronic Pain Struggling to Find Help, Hope".-^1
When it is said that one in five Canadians suffer from Chronic Pain^2, this is unacceptable.  First came the war on drug, that ended up impacting Canadian Pain sufferers more than it does the individuals who choose to use these medications for the wrong reasons. The war on drugs crossed over into the medications category when they went after OxyContin.  There were seemingly benign changes made to make it tamper-proof for the individuals who want it for the high. Other regulations went into effect on March 1, 2012 ^3. For instance, the doctors that decide to keep treating their pain patients will now have to apply within one year to keep prescribing OxyNeo to their previous OxyContin recipients.  There has been no proper preparations for this. As all the doctors go to scramble, patients will be at risk of losing access to their maintenance medication.  Further, 'many provincial and federal drug plans have "de-listed" Oxy Neo'.^4  This means that there is no longer coverage.  Many people in this condition have lost their ability to work, to function the same as others, and to be limited by the pain. People that suffer from Chronic pain are isolated from the community. When you lose the ability to finish your education, or to work, you lose your independence. Family and friends also often turn their backs, because of the stress they deal with in having a friend in pain.  And the people that do stay, they try, but little things like whimpering or crying when you're in pain can eat at them.  The stress leads to sleep deprivation, and that sleep deprivation gets to your nerves.  Chronic pain sufferers are twice as likely to commit suicide. ^5   This is unacceptable.
Not to mention the Doctors that are scared off from treating a chronically ill individuals because of all of these new regulations, as well as the heat now being placed on doctors who prescribe narcotics to patients due to the celebrity attention that has been raised.  The only problem is, the average pain sufferer doesn't have that kind of power to get them to freely hand of unnecessary and redundant medications.  So once again, the only people ibeing hurt by these seemingly harmless new regulations are the people who live in agony every day.^6  Now doctors are deciding patients with a chronic condition that will require them to prescribe "high risk" medications, simply aren't worth the trouble. You  can see just how bad it can be in the MacLean's article which speaks of the ordeals patients have to go through to get in touch with a doc willing to handle their case:
Many adults still have trouble getting pain treatment—even before the delisting. One of Jovey’s patients was turned down by more than 20 doctors when looking for a new general practitioner to replace a retired one. It takes patience, extra work, and even some courage to take on a patient with chronic pain: in addition to the mountains of paperwork behind prescribing opioids, and the omnipresent fear of onerous inspection by the provincial colleges of physicians and surgeons, there’s just too much time required to deal with the complicated issues of chronic pain which—even on a good day—cannot be cured, only managed ^7.

 In the article "I Live this Life in Pain^8", it runs the numbers of people in pain and various wait times associated with publicly funded Pain Clinics:
Pain is virtually ignored in discussions about health reform. Wait times for treatment at publicly funded pain clinics in Canada average one to three years. The chronic pain clinic at Vancouver's St. Paul's Hospital has a 3 1/2-year wait list of about 1,300 patients. In Calgary and Ottawa, the wait time to see a pain doctor can be a year or longer. At the Alan Edwards Pain Management Unit at the Montreal General Hospital, the waiting list is 700 names long.^9
It goes on to say that "for children in pain, the situation is equally bleak".^10 Unfortunately, this is something I can relate to.  
My own case began in 2000. The doctor I had at the time (just as a GP) seemed nice enough, and trustworthy- though as a kid, you are brought up to listen and trust certain people.  We are told that policemen and doctors (among others) are trustworthy and will help you when you're in distress. So when you're told by your doctor that the source of your pain has been found, and he can  make it all stop, you believe him, no?  At this point, his nurse had my mother in a different room, my father was working Shift at the time, and no one knew what was happening. The whole reason for the apt was to get a referral to an orthopedic surgeon. Needless to say, the appointment did not go as expected.  After almost an hour of digging around in my foot with no consent, it was too late, and he had known he screwed up.  We kept being told, 'it'll go away', 'she's too young to have chronic pain', 'it just needs time to heal, be patient', and so forth.
The difficulty then came from finding a doctor both qualified and willing to take my case.  What I didn't become aware of until a serious incident brought it to light, but this doctor was too busy covering his butt, my health care was suffering.  Clinics weren't getting followups, it was like pulling teeth to get him to tell me about their assessments, and suggestions, and he was territorial to the point of threatening me.  All of this was happening between the age of 12 to 20.  It's inevitable that you will develop a fear of hospitals and doctors, and have some anxiety in those situations, but some doctors aren't trained to assess their patients, so they take it as an over dramatization, or something similar. Since then, I have been trying to find a pain doctor who is willing to take my case.  My first pain doctor post-bad GP, was a specialist in Palliative care, and dealt with other pain sufferers as well. I would say he was one of the least compassionate doctors I had met. He sent me to a psychiatrist as a part of this "three pronged approach to pain". When I went to discuss with him the need for help and progress, and that they psychiatrist had given up on my case (telling me to accept it, this is how life is going to be). I was then told he had retired and when I asked them if someone new could take my case...well, we're still waiting on that one.  Even so, the wait times are insane.  
The wait times for people looking for a Pain doctor can reach up to three and a half years.^11

There is an extreme financial burden placed on those suffering and those who are trying to help them^12.  It is all up to the doctor to assess and decide whether you are officially disabled or not, and sometimes their assessment is dependent on whether you walk a block, or two blocks. The criteria is nonspecific, and when you are dealing with chronic pain, it's a condition that changes from patient to patient.  Those that suffer from a pain condition will often develop other issues such as Anxiety and depression. The debate whether the depression should be treated as "depression" or as as symptom of the pain condition is still debated. What needs to happen is there needs to be a new approach to treating it, either way.  For myself, I never felt depressed.   I was active in the community, I loved the interests I had had since a kid, and I bounced back as hard as I could so I didn't get left behind.  It inevitably leads to misunderstandings. People see you out and about one day, and the next you're using crutches or a cane just to get around the house.  Especially as children, this creates hostile situations and bullying.  

These reports all show the same thing: There NEEDS to be a National Pain Strategy. Right now, the cost stands at $6 billion per year in health care costs ^13 and an estimated $37billion in lost productivity^14 This accounts for more than Cancer, heart disease and HIV combined. ^15
However, the biggest costs are those the patients themselves face.   

We need the government to hear our voice and realize that we need to help the people suffering before the numbers are too great. And instead of cutting funding we should be identifying which areas need more grants and need more clinics with PROPERLY trained in treating pain.
A recent study looked into the level of funding research into pain conditions count in the grand scheme. This is what they found: 
To determine the current level of research funding for pain in Canada, the Canadian Pain Society conducted a survey. Of 79 active researchers performing pain-related studies, 65 received funding
in the past five years amounting to a total of approximately $80.9 million. This is less than 1% of the total funding from the Canadian Institutes of Health Research and 0.25% of the total funding for health research.^16
Another statistic looks at the level of training and the number of doctors who are ignorant about prescribing or assessing.  They looked at the health care training compared to those who are involved in Veterinary care, and they found that "a survey of 10 major Canadian universities found that veterinary medicine students receive, on average, 87 hours of mandatory training in pain, versus 16 hours, on average, for medical students".^17
There is also "inadequate funding for research (just one-quarter of one per cent cent of all federal dollars for health research in Canada go to pain). ^18
This needs to change.  We patients are made to feel like we have no control over our lives. A good doctor does exist, but they are hard to find.  Not to mention the cost.  Canadians seem to think that the healthcare system is completely free access. There are so many people trying to fight for our rights but we need help.  There are new organizations popping up- some of which are led by doctors who recognize the situation  we're in.  Others are trying to qualify as a charity.  And one offers advocates to help people who have no one to help attend appointments to make sure we are not taken advantage of. 
There is so much more to discuss and so much more to the fight against Chronic Pain. I hope that through this blog, you will be able to understand from a personal level from both the patients and the doctors willing to help, but you will also able to be informed with all the facts.  I will go on to discuss those groups and more links of course, to come. 


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