Adrenal Insufficiency Protocols

1.    Gather some background – Emergency Management Services (EMS) do not operate the same way in everything city, county, or state.

a. Figure out what your local area EMS is called and how they operate. It may be organized by the city services, by county, run by the fire department or independently owed, private companies.  Doing a little research prior to contacting them will benefit you three-fold:

i. You can understand the scope of the protocol changes that are in front of you.

ii. Your understanding of their agency shows them that you’ve taken the time to understand how things work for them. Just like an interview, a little research shows you care.

iii. You can gauge a lot (sometimes) by the way the EMS website is written. Are they committed to serving the public and meeting their needs? Is the Chief openly supportive of change and new ideas?  Is it just basic contact information? Is there any contact information other than a main contact us form (try to avoid those, see 1c below)?  Sometimes the EMS has no control over what gets posted on ‘their page.’  This detail may be a sign of a lot of bureaucratic red-tape or limited resources within the system as a whole.  Look for information you gather as you craft your initial contact.

b. Look for a protocol posted online.

i. Note the date it was published. If it’s more than a few years old, you may want to be cautious about it being the most up-to-date.

ii. If it’s a searchable document look for the following phrases, try different spellings for each word, and take note:

1. Solu-cortef, solucortef, cortef

2. Solu-medrol, solumedrol

3. Adrenal crisis, acute adrenal

4. Asthma, shock (These terms may have some clue about how they would treat someone with adrenal insufficiency (AI))

c. Figure out who you need to contact to make the right connections. Larger EMS will have more specified positions to handle each of the department’s different aspects.  Smaller agencies may have one person doing a combination of these positions.  Keep their structure in mind when corresponding and making requests.

i. Chief or head of the EMS

ii. Training development coordinator

iii. Medical Director

2.    Gather resources – before contacting your local EMS make sure you’re ready to provide them with any answers they need in a timely manner.

Your preparedness and quick correspondence will make you shine and give them the tools for success.  Sure, EMS operations and emergency medicine is their field, but adrenal insufficiency is not your average bear.  What was once overwhelming to you as a parent, or person with AI will likely trigger the same response in them.  Their inability to provide answers or solutions will only impede the process and slow things down.  Thar’s why it’s important to have solutions ready when they arise.  Once you gain momentum, don’t let it stop.  Prepare now. You can download and use the PowerPoint found on this website.

Please check with other AI groups, as well as specialty groups that cover your specific form of AI (Addison’s, Congenital Adrenal Hyperplasia (CAH), Panhypopituitarism, etc.).

3.     Get ready for contact – Drafting the perfect email is essential.

Your first contact sets the perfect tone for the conversation.  Be crafty, be prepared, here’s what you need to include:

a. Know your ‘ask’ – What are you asking them to do? The answers to this question will vary depending on what’s already in place, and what your goals are for an AI protocol change.  Consider the following two most sought solutions:

i. Administer patient carried Solu-Cortef and provide training to all EMS personnel.

ii. Carry vials of Solu-Cortef on all ambulances, and provide training all EMS personnel.

b. How/what are you able to provide in support of getting the change to happen?

Will you help them get the word out to other local AI patients? Contacting local endocrinologists? Visit to the EMS facility to provide training? Coordinate with local endos for them to help with the building of training? Provide them resources/materials/videos to help them provide training (see those materials you gathered are already coming in handy.)

c. What’s your personal story? The personal appeal.

Providing some background on who will benefit in the community from their action to make a change will help go a long way.  Word of caution, try to balance this section with the length of the entire email.  Provide a few key details and the importance a protocol change will make to you, but try to avoid a long story with lots of little details.  Remember, they don’t know you yet.  Once you meet with them, you can gauge their willingness/want to hear your story.   If you have a PDF or blog you can point to after a paragraph of information, that’s ideal. Send a link to this website. Don’t forget to provide several ways to contact you in the future.  You wouldn’t want to limit correspondence because they can’t get a hold of you.

Still not sure what to write? Contact us and we can help!

Not sure email is the best way to start off? Email is a preferred method for many professionals. It allows for record keeping, forwarding to the correct people that need to be involved, and no one is put on the spot to answer your request at that moment.  However, you know your area better than others, if a phone call, or in person visit seems right to you, go for it.  The above still applies, with some tweaking.)

4.     Ready, set, SEND. When you send any email it is as important as the thought you put into it.  Make sure those you send it to are best prepared to receive it. 

AVOID: Monday and Friday. They are catch-up days for things the happened over the weekend, or things that didn’t get done all week before the coming weekend.  Late times of the work day.  When you send something after 3:30 p.m. the likelihood is that your email will be at the bottom of the list to get to tomorrow. Late at night.  No one likes to be bothered by their chiming phone when they are just about to fall asleep or to be awoken by it.  If by chance they see your name come in on the phone and they’re already annoyed, it lessens the likelihood of getting a prompt reply.

BEST TIMES to SEND: Tuesday, Wednesday, Thursday around 10:00 a.m.  People have gone through most of their important emails by about that time and cleared out most of the ‘need to get done now’ issues.    

Of course every department is different and EMS hours are not always standardized.  Do your best to set them up for success.

5.     Wait for a response.

Like any office environment there are systems and chains of command thay may need to be involved.  Some people get lucky and contact the right person the first time.  Other people will be forwarded to several people (you may not actually be CC’d – but things are happening behind the scenes) that may play a part in getting the change you are requesting.

If you aren’t getting any response, a follow-up email and/or phone call can certainly help remind them of your request.  If you are hitting a road block? See our troubleshooting section for some solutions to common hazards.

Common Road Blocks When Trying to Establish an EMS Protocol (and some solutions we hope will help)

1. We already provide XYZ protocol for the use of Solu-Medrol that would work for AI patients.

a. Provide them with Solu-medrol vs. Solu-cortef handout.

2. We’re too small to create special protocol/training.

a. Provide video resources for training purposes.

b. Offer to come in an train personnel (or get a local nurse/doc/endo)

3. We’re too large to create special protocol/training. It’s too complicated, there are too many people involved to make that kind of change.

a. Your research of your EMS will come in handy here. Find other agencies (in the complicated system) in your area you can contact to see if they are willing to step up and start the change process.  You’ll need to tread lightly, as to not offend anyone.  But by the same token, it’s your child/your health we’re talking about here. 

b. You can make a visit to the EMS (or firehouse however it is set up) – bring goodies and the person/people affected by AI.  In-person meetings and treats can make a connection that sparks change. 

c. Try advocating with other local families, contact your specialized AI group to see if anyone else in the area wants to be part of the change process. 

d. Contact your endo and see if he/she can make contact with the Medical Director.  See if other counties/EMS/cities near you have adopted the change, a little peer pressure (in this instance) can be a good thing.  Key is to find what works for you and your community.

e. If all else fails, appeal to a higher authority.  Yes, pray on it (if that’s your thing) but what we mean is, get others in the community involved such as a mayor, commissioner, local news station etc. that can leverage change.  This method is a course of last resort.  You want your EMS to work with you to make a change.

4. We only conduct protocol changes and/or conduct training every X number of years.

a. Systematic change is difficult to overcome and patience is required. Remember your end goal.  If it’s going to take a year to get things done, that might be better than never.  It’s up to you what you think is reasonable.  Know that the EMS has their own levels of bureaucracy and red tape that can extend to the county or even the state level.   These things take time.