Patience to Paranoia - Referrals

Pretty much every bit of news regarding health, especially when you suffer from something chronic - is a good-news/bad-news situation.
If you get a diagnosis, the diagnosis is usually just plain crappy, but it also means that they have finally figured out a cause for whatever symptoms have been causing you pain.
If you are put on a medication then you will have to always be careful about side effects and contraindications and other medications or substances, but it also means that there IS a potential treatment for whatever ails you. You might feel better.

When it comes to referrals to specialists, it usually means that whatever you are dealing with is more serious than you'd like it to be - it is likely not a quick-fix - but it also means that your doctor believes you and recognizes that your symptoms could be serious and need a more thorough review. This last part is a really good thing. It may not seem like it, it may not feel like it, but getting a doctor to believe you is one of the toughest parts. For some it can take months or even years to be taken seriously, and our health is at the mercy of that first-line physician.

I have had a lot of luck in this area, apart from a few years here and there. 3 years ago, when my thyroid disease when a little bonkers, I had some unfortunate experiences. The family doctor I was seeing refused to check my thyroid levels because my Hashimoto's had been quite stable. A second doctor told me that he HAD checked my thyroid levels and that they came back normal. So I put that avenue completely out of my mind. That means that each time I went to the Emergency Department, when they asked if they have checked my thyroid, I would say "yes" and they would skip that bloodwork. Every time I saw one of my specialists, naturopaths, pharmacists, physiotherapists, and every appointment at the Chronic Pain Centre, they would all ask if my thyroid had been checked, and I would say "yes". So why would they check on something that had already been ruled out? It was only when I received some help from some influential people - people who are friends with specialists and doctors who could help that I was transferred to a new family doctor AND was seen at the Urgent Care Assessment Clinic (which is essentially for patients who are on the road to dying but still have yet to find a reason, and who do not have Cancer). I met with an amazing doctor there. And let's face it, if you are dying, everyone treats you a little bit faster. Within merely days, my doctor was able to wrangle consults with at least 6 different specialists. My new family doctor ordered the bloodwork to check thyroid levels and they were double what they should have been.
The most heartbreaking part of this is that it was SUCH an easy test, and SUCH an easy fix. One blood test. One change in medication. The tough part is that it took nearly a year to truly settle.

Okay back on topic.
Referrals.
When you finally get a referral, that's the first step to figuring things out. It means that someone important believes you and has tried to pinpoint the general area of expertise that is required to figure it out.

The next part is sometimes even harder than getting someone to believe you.
It involves waiting.

Once you get a referral, that is a HUGE step, but unless you are an emergent case, you are gonna have to wait. Emergent is also a term that doesn't always coincide with the patient's version. Your symptoms might be disrupting every moment of your life, it might even be keeping you from working or having a decent quality of life, but unless you are dying, it is still not considered emergent. If they look at your chart and have a general idea of what it might be, and there are medications that can help treat it, then you may not be considered emergent. If you have something that is chronic and does not have a decent treatment or a cure, you are absolutely not considered emergent, especially if it is a common ailment.

Waiting times definitely vary. I would say, on average, waiting for an appointment with a specialist is between 6-8 months. That is usually with one of the top specialists. The top guru may take a year or more, and less well-known specialists who have a smaller practice may get you an appointment sooner. In addition, if the office staff is well-organized then it could be quicker, but if the office itself is in shambles (which many are), it could take even longer.
Your doctor who made the referral will be notified when a referral is 'accepted', and they will usually have a general idea of how long it might take to hear back. So ask them. Then, when it gets to the time in between the soonest possible appointment and the latest (like at 7 months), if you haven't heard anything, you can always call your doctor or even the clinic if you know who it is. I definitely don't like to pester, but files DO get lost or misplaced sometimes. You can fall through the cracks.

My file has fallen through the cracks at least a dozen times. Paperwork not being sent to insurance for a special medication. My file being lost completely when they changed computer programs. My file being misplaced when they move offices. Referral papers lost for no reason at all. My name being filed under something else or my results combined with someone else's chart with the last name Schmidt.

It happens.
So if you have reached the point or passed the point where you probably should have been notified, it is okay to call. Not every day. Not each week. And please don't be rude. But it is okay to call and ask, or book a follow-up with your family physician and ask them.

Once you have had your file lost or misplaced or have completely missed a treatment or possible improvement in your health due to a clerical error, it is a fine line between remaining patient and becoming absolutely paranoid that you have been forgotten. It's the same feeling you can get in the Emergency Department. You are brought back and given a room and then you wait and wait and wait for the doctor. Just when you are about to check with the nurse whether they have forgotten you, that is when the doctor walks in. There are times patients are forgotten (things get chaotic for them too), so it is important to find a balance between being patient and realizing when you may have been forgotten.

Always remember that, in any of these situations, although you might feel like you should be a high priority, sometimes you are a lower priority than some other people. It's all about timing. If you are suffering projectile vomiting and uncontrollable pain, but you arrive at the hospital the same night as a fatal automotive accident with others requiring immediate surgery and having internal bleeding, you are considered a lower priority, yet still an emergent case. Other nights, someone with constipation and needing an enema is the highest priority at the time.
It feels like gambling.
(I hate gambling).
The bottom line - your situation IS important, and it is vital to advocate for yourself, but it is important to also remember that your case may not be the MOST important and you may required to learn patience.

With chronic illness, there is a hell of a lot of hurry-up-and-wait predicaments. Navigating those involves a learning curve and even more patience. But we all go through it. We all have stories - good and bad - and it is never ending. It never hurts to check up on things during the process though.

Good luck!!