Caregiving Corner

The MWSF Community Advisory Board meets every month, and in September, the discussion was all about developing a comprehensive and unified care team:

If your child is in a children’s hospital and you are concerned about their care, you may be able to call for a “code blue”, requiring the advisory board to respond quickly (sometimes within 30 minutes). Note that policies may vary among hospitals.
Developing long-term relationships is very important. Generally, the longer the relationship is, the more the physician or healthcare professional will listen. Very often, new doctors will provide less support.
Conflicts are going to happen – be patient. Many healthcare professionals have never heard of MWS and they need to be educated. Provide them with information and it even helps to share stories from other families. One CAB member even described showing a physician posts from the Facebook group, so they could see that other families were experiencing similar issues.

Palliative care is an important part of the care team
Develop a comprehensive care team that can provide wrap-around support
Provide physicians, healthcare professionals and anyone on the team as much information about MWS as you can
Develop a team such that everyone knows it is a long-term effort. It is ALL about the relationships
All team members should be open and willing to learn
If a healthcare professional continues to dismiss you and ignore the information you provide or your pleas for help/support, you may need to move on and find a new one
Be patient – we are all learning together
Be prepared that as your child becomes an adult, you may need to create a whole new team for adult care