An Idea Whose Time Has Come

At the beginning of 2015, Researchers, Clinicians and NMO Patients gathered informally for a few hours at the University of British Columbia to have a round table discussion about whatever was on our minds. It was a really great opportunity for all parties to meet, ask questions and get answers.

During the discussion, I shared an idea I had about creating a wallet card for NMO patients. I thought it would be helpful to have something we could present to medical staff in the event that we had a relapse and had to make an emergency trip to an ER. My thinking was that if the card detailed what NMO was and what the standard of care was, it would help reduce confusion for medical staff not familiar with NMO and aid in facilitating the proper treatment protocol in a timely manner.

The response to this idea was immediate. Katrina McMullen and Julia Schubert, both of whom work with the NMO clinic and research program got right to work to make this happen.  Julia did a beautiful job designing the wallet card and Dr. Rob Curruthers and Dr. Tony Traboulsee provided the medical content.

This is what the front looks like:

front

(Click to view larger)

If you scan the QR code at the top right, it gives you access to a PDF which has more information on NMO and treatment options.

This is what’s on the back:

back

(Click to view larger)

It includes an explanation of what NMO is, the standard treatment protocol for attacks and several contact numbers for the UBC MS/NMO clinic.

NMO patients in British Columbia can request cards from by emailing NMO Clinic and Research Program manager, Katrina McMullen, (katrina.mcmullen@ubc.ca) or they can ask for the cards while at the UBC clinic for a doctor’s appointment or research visit.  Katrina and Julia welcome any feedback or requests as they hope to continue to develop programs to meet patient’s needs in the BC.

So…there you have it! An idea whose time has come! I am so proud of the team at UBC for investing in this idea and executing it so incredibly well in such a short period of time. Our collective hope is that this will help make a difference in the lives of NMO patients. This initiative underscores the importance of team work when it comes to advocating for NMO awareness. A heartfelt THANK YOU to everyone involved & congratulations on a job well done!

06
Jul 2015
POSTED BY Lelainia Lloyd
DISCUSSION 22 Comments
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22 Comments

  1. Donna Tocci

    That is a great idea, but if unconscious, the hospital staff would have to go through your wallet, and would probably only be looking for ID. A medical alert bracelet might be a better idea.
    Thank you,
    Donna

    Comment by Donna Tocci on July 6, 2015 at 1:47 pm

  2. Lelainia Lloyd

    Hi Donna,
    This is not to take the place of Medical alert bracelets. The idea is that if you are having to go into the ER say on a weekend or in an unfamiliar place, that it would help smooth the way to getting the correct treatment in a timely manner. Many NMO patients find that they waste alot of time trying to explain the serious of NMO and that they need steroids. Some have even even sent home without getting help. This is not meant to replace anything, but to enhance their ability to get help.

    Comment by Lelainia Lloyd on July 6, 2015 at 2:03 pm

  3. Iliana Barahona

    It would be nice to see this in other provinces like Ontario!

    Comment by Iliana Barahona on July 6, 2015 at 2:23 pm

  4. Lelainia Lloyd

    Yes! That would be fantastic!!

    Comment by Lelainia Lloyd on July 6, 2015 at 2:42 pm

  5. Michele Dollar

    I would like to see this come to the US as I see this being a very informative tool!

    Comment by Michele Dollar on July 6, 2015 at 3:03 pm

  6. Lelainia Lloyd

    Thanks Michele! I’d love to see that happen too!

    Comment by Lelainia Lloyd on July 6, 2015 at 3:34 pm

  7. Mary Philip

    The card is a great idea! A medic alert bracelet is also a good idea.

    Comment by Mary Philip on July 6, 2015 at 3:20 pm

  8. Lelainia Lloyd

    Thanks Mary! Yes, both help empower patients! I’ve had a medic alert bracelet for 22 years.

    Comment by Lelainia Lloyd on July 6, 2015 at 3:33 pm

  9. Paula Luce

    Would love to see these life saving cards available in the US!

    Comment by Paula Luce on July 6, 2015 at 3:24 pm

  10. Lelainia Lloyd

    Thanks Paula! Me too!

    Comment by Lelainia Lloyd on July 6, 2015 at 3:32 pm

  11. Katrina McMullen

    It’s not intended to replace medical alert bracelets but is a complimentary tool that can help to communicate your diagnosis and treatment options in case of a relapse. I recommend that your emergency contact and/or significant other carry the card too.

    Comment by Katrina McMullen on July 6, 2015 at 5:29 pm

  12. Tracy Owens

    The UK has a paper card with NMO info and the person’s doctor’s name, number, etc. on it.

    Here in the US Jodes McGarry designed a trifold (paper) card with similar info on it.

    I really like THIS card (hard plastic I’m assuming) with the bar code and and info on it. Similar to an implanted device card that you carry.

    For those worried about it not being found as first responders are going through your wallet for ID, I keep my Medic Alert card and my pacemaker card right WITH my driver’s license. That way they find it ALL when they find my driver’s license. Of course, I also wear a Medic Alert bracelet too but still….

    Comment by Tracy Owens on July 6, 2015 at 5:57 pm

  13. Lelainia Lloyd

    Hi Tracy! I didn’t know others had developed something similar-that’s great. Not entirely sure what ours are made of, but they have a very smooth finish and seem durable. I like the idea of keeping it next to my licence. You are so smart! The more info we have in an emergency, the better. My main goal was to have something official that we could hand to ER staff to say “Here’s what I have and here is the proper protocol/standard of care for an NMO attack” to help things happen faster and more smoothly. Having a card will help ER staff know the info is legit and take it seriously.

    Comment by Lelainia Lloyd on July 8, 2015 at 1:12 am

  14. Jackie

    I’d love to see this as well in the U.S.!!

    Comment by Jackie on July 6, 2015 at 6:25 pm

  15. Dan Allen

    This is good news, We can’t wait to get this in the states.

    Comment by Dan Allen on July 6, 2015 at 7:26 pm

  16. Kathy Chipperfield

    I love this idea ! I would feel more secure having it when I travel .

    Comment by Kathy Chipperfield on July 6, 2015 at 7:56 pm

  17. Cynthia Albright

    What a great idea! I really wish we had that here in the U.S. Please share your ideas with Johns Hopkins Hospital, and Mayo Clinic. The closest thing that I’m aware of is a USB with our personal information stored in it. Good luck and way to go!!

    Comment by Cynthia Albright on July 7, 2015 at 2:38 am

  18. Lelainia Lloyd

    Thank you for the positive feedback! Feel free to share this blog post with Johns Hopkins & the Mayo Clinic-maybe they will see the value of this initiative and adopt it in your area. Can’t hurt to ask-all I did was ask! We need to advocate for what we need. 🙂

    Comment by Lelainia Lloyd on July 8, 2015 at 1:09 am

  19. mary coy

    We need these in the US!

    Comment by mary coy on July 7, 2015 at 11:56 pm

  20. Luara

    Hi! That’s amazing. I would like to know if this card is just for UBC patients…

    Comment by Luara on July 8, 2015 at 12:39 am

  21. Lelainia Lloyd

    Hi Luara,
    This NMO Patient Card is available and specific to NMO patients who live in British Columbia. If you live in BC, you can get one either by visiting the UBC MS/NMO clinic or by emailing Katrina (her contact info is in my post) and she can send you one. Currently it’s not available in other areas of Canada or the US, but since there’s been such a great response, perhaps other clinics will adopt this idea and make it happen for their NMO patients! Here’s hoping!

    Comment by Lelainia Lloyd on July 8, 2015 at 1:05 am

  22. Meg

    Love love love this idea! we need this card and medical bracelet created in the US!

    Comment by Meg on July 9, 2015 at 7:45 pm

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