March is MH Awareness Month: What you can do to make a difference

By MHAUS President Henry Rosenberg, MD, CPE

 

March is MH Awareness and Training Month

Thanks to the efforts of many patients and health care providers who have an interest in the problem of MH, many states will declare March to be MH Awareness and Training month. This effort will serve to alert the community of patients and providers to the problem of MH and prevent deaths and disability from MH.

 

Coincidentally, several projects that we have been developing will also come to fruition in or around March. For example, our MH Mock Drill Kit designed to provide guidance in organizing and conducting an MH drill, was recently completed and is ready for shipping, a bit before March, but close.

 

The Guideline for transfer of care of a patient, who develops MH in a setting outside the hospital to a nearby hospital for emergency care, a joint project between MHAUS and the Ambulatory Surgery Society Foundation, will likely be ready for release to the public in March.

 

MHAUS will be exhibiting at the Association of OR nurses in March in Denver where the MH Mock Drill Kit, the Guide to Malignant Hyperthermia in an Anesthesia Setting and other programs will be displayed. New video footage will be added to our website describing the history of MH and MHAUS and what MHAUS means to some of our supporters.

 

However, much as MHAUS can do to promote awareness of MH and improve patient care, our resources are limited. But there are many things you can do to help us achieve the mission of MHAUS. Here are a few:

 

If you are a patient you can:

• Talk about MH with your friends. One way to introduce the topic might be through a discussion of the movie Extraordinary Measures, which is about another uncommon genetic disorder, Pompeâ??s disease. You can easily segue to MH.
• Write a letter supporting March as MH Awareness and Training month. It is not too late. Contact Michael ([email protected]) or any of the staff at MHAUS, 607 674-7901 for further information or go to the MHAUS facebook page.
• Become a member of MHAUS. For $35 a year you will get the latest information on MH and MHAUS including our quarterly newsletters. Why not give a gift membership to a friend or colleague?
• Visit your local hospital or surgery center, ask to speak to the head OR nurse or chief of anesthesia and find out if they have a full supply of dantrolene, and a protocol for managing MH. Ask when they last had in-service training on MH or an actual case of MH. Come prepared with material to distribute from MHAUS.
• If you or a family member had a close call with MH, write a letter to your local newspaper describing the syndrome and how MHAUS protocols and hotline might have helped in managing the crisis.
• If you or a family member were tested for MH in one of the testing centers, write a thank you note to the biopsy center director or whomever helped you understand MH and its problems.
• Have a gathering in your home and have a discussion about MH. Ask your local hospital to provide a speaker on MH; an anesthesiologist or CRNA or OR nurse. See if you can borrow a video of an interview about MH from the Wood Library Museum of the American Society of Anesthesiologists (http://www.woodlibrarymuseum.org/). I would particularly recommend the interview with Dr. Gai Harrison who was the first to use dantrolene to treat MH in pigs.
• Suggest to your child that they consider a science project on MH for school.
• Consider starting an MH Chapter. I am including at the end of this blog a guideline developed by MHAUS for starting a chapter.
• If you are moving or have extra â??stuffâ?? consider a garage sale with proceeds in part or in whole to MHAUS. Even if you are not moving, consider a fund raising event for MHAUS.
• If you have had an MH episode register yourself with the North American MH Registry of MHAUS (mhreg.org) by downloading the appropriate forms. If you are a member, check with them to assure your address is updated.

 

If you are a medical, nursing or health care professional, here are some things you can do as well:

• Check to make sure that your facility or facilities have a full supply of dantrolene, at minimum and a wall poster that describe treatment protocol for MH.
• Give an in-service talk about MH or, if you cannot do that, invite one of our speakerâ??s bureau members to speak. However, that will require funding.
• Acquire the MH Mock Drill Kit for the facilities where you work. Have the OR team perform an MH drill. It is required for accreditation by the AAAASF that accredits ambulatory surgery centers.
• Become a member/supporter of MHAUS. Write a letter or email supporting designating March as MH Awareness and Training month.
• Learn about the signs of MH and how to assist patients get the most up to date information about MH. Read a review article or chapter on MH and similar disorders.
• Be sure to monitor your patientâ??s body temperature during ALL general anesthetics lasting more than 20 minutes.
• Attend a patient/provider conference on MH in your area. If you are attending a professional society meeting, attend a session addressing MH.
• Suggest to your society that they have a speaker or session on MH.
• Suggest to a trainee who is need of an idea for a research project, that they research cases of MH at your facility and write a paper on the results.
• Check the MHAUS web site and challenge yourself with our case of the month.
• Write a letter or email to the MHAUS staff with suggestions, comments, or simply a thank you for the work the staff, the professional advisory council and the 30+ volunteer MH hotline consultants perform on behalf of those at risk for MH.
• Register for the MH Scientific Conference in Pittsburgh April 23-24. Full details of the conference can be found here.

 

If you have other ideas, please share them with me and we will post them on our Facebook page and Twitter site.

 

The pace of activities related to MH will spill over into April. On April 9, 2010 I will be giving a presentation on the history of MH and MHAUS at the annual Anesthesia History Association meeting in Winston Salem, NC (see http://www.anesthesia.wisc.edu/aha/#)

 

Following that will be the MH Scientific Congress at the University of Pittsburgh Medical Center as indicated previously.

 

On May 20-22, the European MH group will be meeting in Vienna, Austria. (www.emhg.org).

 

Most of all, I would like to thank you for reading my essays and for your interest in promoting safe patient care. Raising Awareness about MH Where You Live.

 

Working together, we can keep patients safer from Malignant Hyperthermia emergencies.

 

MHAUS Group Guidelines:

Developed by Michael Wesolowski, MHAUS

 

1) Basics:

a) Membership: all participants should be members of MHAUS.

b) Service area: each group needs to define the geographical footprint the Group will serve: such as, your village, city, town, county, or state, etc.

c) Technology: the Internet is an important tool for MHAUS. Someone in the group should be able to use the Internet and have email to communicate and share Excel files of contact lists and fundraising activities with MHAUS. Also it would benefit your group to maintain a page on the MHAUS website, and to participate on the MHAUS Fan Page on Facebook.

d) Approval: new groups need sign up with the MHAUS Patient Liaison Committee by contacting [email protected].

e) Governance: each Group shall organize itself in a manner appropriate for local conditions and Group activities.

f) Duration: The term of existence of an approved Group shall be one year. If at the end of this period the Group wishes to continue, it simply has to submit a newly signed agreement to the Patient Liaison Committee.

g) Operating funds: Group monies come from Group fundraising activities; and monies raised by the Group then get split equally between the Group and MHAUS.

 

2) Make a list of key targets in your footprint:

a) Ambulatory surgical centers

b) Hospitals

c) Office-based surgical facilities; plastic surgeons, etc.

d) Political and civic leaders

e) Ambulance services

 

3) Form relationships with key people in your footprint:

a) Anesthesiologists

b) Nurse anesthetists

c) Facility educators

d) Hospital pharmacists

e) Surgical facility planners

f) Operating room management staff

g) Political and civic leaders

 

4) Have events:

Events goal: suggest engaging in one bullet point from one or more areas of the below grid each year. Consider the following components when putting together an event:

a) Purpose: Have a clear theme or purpose for the gathering.

b) Timeline: decide date for the event is and work backwards.

c) Host: Recruit a dynamic host.

d) Audience: Invite a good group to get things started.

e) Promotion: Invite people in; use your networks.

f) Management: Party down; make sure conversation keeps going with fresh material and people.

g) Moderation: Expect party crashers; keep the peace.

h) Staffing: Make sure you have adequate assistance to keep it going.

 

Networking

• Share experiences
• Life networking
• Learning

 

Mass Gathering

• Social gatherings
• Sporting events
• Cultural activities
• MH â??Letâ??s Save A Lifeâ?? mini-conference

 

Development

• Recruit members (MH susceptible people, family, friends, medical professionals and others)
• Raise monies established funds
• Raise monies for MH Hotline
• House parties
• Dinner with keynote speakers

 

Outreach

• Community service
• Legislative and MH surgical facility advocacy â?? write letters to facilities in your footprint
• Public relations
• Work with hospitals to create an information tent event in their parking lot to talk about MH and other disorders and diseases.