I have spent a little time reflecting on the work I’ve been able to be a part of as the Patient Advocate the past 6 months and wanted to share a few things that struck me.
Since the launching of the Patient Advocacy Program at the end of January through the end of July, I have been able to serve 75 cases for families! Each family has been unique in their circumstances. Some parents had a sudden illness come upon one of their children. Some experienced a premature birth. Some had been dealing with a chronic illness or medically complex diagnosis with a child for years. Because the landscape is so diverse for our families, it has been clear that the research I do into resources around the state should be as broad as possible. I have needed to call on food banks, Wyoming Health Department programs, counselors, rent assistance (through foundations and federally funded programs), hotels for appointments, summer camps for children with similar illnesses and their families, and even college courses for parents needing to know how to care for their child when they return home from the hospital. Every family is unique and it matters to me to care for the whole family in their medical journey.
It has been amazing to see the chain of connections that bring a family to me! I have worked with social workers and other hospital personnel on behalf of families that I have never spoken to and that has been a great experience. Wyoming takes care of their own, but we do it fairly quietly. Being able to know more local resources around the state has been a huge help to families while they are still at an out of state hospital in need of support now or when they arrive home. It is pretty awesome to be able to pass along to the hospital personnel to make those connections a possibility! It is an incredible process every time to talk to these local resources and see their care and compassion to do whatever they can to help. We live in a pretty wonderful state!
It is also amazing to see how friends and family members will reach out on behalf of their loved ones that need support while their child is sick. I know that it can be hard to ask for help personally, so to have people in our lives who will start that process by reaching out for us can be a lot easier to receive a phone call instead of making one. I have had the privilege of hearing from a school nurse, friends, and other non profits that care for the child who is ill and their family and want them to find as much support as possible. Because they reached out to me, I could reach out to mom and/or dad. In those conversations, we were usually able to come up with a specific need(s) and go from there to help them on their way.
Some families have only needed one resource and they are ready to jet forward. Others have needed several resources at one time. And still others have had a very challenging road that has built into a more long term support team as their child’s illness continues to make waves for their lives. One thing that I have really enjoyed seeing is that no matter where a family is at, no matter what sort of needs they have, and no matter how long it takes, these families LOVE each other and are so committed to making it through the best that they can. I am so proud of how the families I have served have selflessly given so much to ensure that their family is being taken care of in difficult circumstances. I truly count it an honor to walk alongside them for however long they want me on their team!
If you know of anyone who has a child with a chronic illness or medically complex diagnosis, please consider reaching out to me or sending them my way. If you are that mom or dad, please do the same! It is amazing to see what resources we have in Wyoming for the families who need it. You can call me at 307-333-1273 or email me at firstname.lastname@example.org or find us on Facebook.
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