A year in review

Yesterday I had the opportunity to speak with a representative of the Magnet review board about patient engagement initiatives led by our wound care team. I was humbled that they would ask me to speak on behalf of the people who’ve helped me so much in my continuing recovering/adjustment to life as an ostomate. It also was a good opportunity to reflect on some of the changes that have happened in the past year.

A year ago we laid out several goals and here is the status on where we are toward achieving some of those goals.

  1. CCFA patient support group: The group for adult patients (>18 years) with IBD just had our third meeting. We meet monthly each second Tuesday and attendance has been steadily growing. This group would not have gotten off the ground without the hard work of the two co facilitators who are two really great people. I think it has been successful and I am learning so much more from other patients its fascinating.
  2. Pre-operative education pathways: One of the wound care nurses had been pushing for pre operative patient education pathways (to describe procedure, mark stoma location, answer questions/allay fears etc) for quite a while before I had anything to do with this. These pathways have been solidified for urology patients and expanded to include patients of the colo-rectal surgeon. Now all patients with a scheduled ostomy procedure will have a standardized educational session with an certified ostomy nurse. This is an essential step toward providing high quality care. More work is needed to ensure oncology patients are receiving similar education/counseling.
  3. Printed educational material: When I was an inpatient I was given a book with a list of questions and local resources for new ostomates. This was overwhelming and I couldn’t comprehend any of the information. As I got stronger I was able to digest the information and recognized changes needed to be made. I spoke with the wound care nurses and they were actually just about to start updating these books.
    1. With the goal of making evidence based, PATIENT CENTERED guides we completed the ileostomy companion booklet and have rolled changes out to the colostomy booklet. The next steps are to similarly update the pediatric and urostomy booklets.
    2. The first thing patients or parents read when they open these books is a short message written by a local patient reassuring them that yes right now this is overwhelming but they will be OKAY. Having an immediate sense of I am not alone and knowing that others do well after surgery is important and reassuring.
    3. Guides are now arranged thematically (lifestyle changes, complications, nutrition/fluids, etc) to make it easy for patients to quickly access and reference information. Furthermore, booklets contain simplified cartoons or pictures for just about everything from explanations of anatomy to pictures of complications and definitions of ostomy components so that everyone is speaking the same language.
    4. Fluid intake and output tracking charts have been added to booklets and specific emphasis has been placed on eliminating dehydration as described by
      Nagle D, Pare T, Keenan E, Marcet K, Tizio S, Poylin V. Ileostomy pathway virtually eliminates readmissions for dehydration in new ostomates. Dis Colon
      Rectum. 2012 Dec;55(12):1266-72. doi: 10.1097/DCR.0b013e31827080c1. PubMed PMI 23135585.
    5. Commercial resources with programs for those who do not have insurance and meet eligibility have been added.
  4. Electronic patient education: Approximately $4,500 have been donated to the wound care team. Thank YOU for your support. We are going to purchase ~2 tablets for beta testing, refine logistics (cases, security etc), and then get this technology into the hands of our wound care nurses.
    1. With a disproportionately high illiteracy rate in our city having videos and audio recordings is essential.
    2. Additionally, electronic media facilitates translation services.

Where do we go from here:

  • Non-profit: Given that our hospital is  a distinguished trauma center and that we serve the most indigent populations in the state, I suspect that we have a disproportionately high rate of individuals undergoing ostomy construction due to trauma (GSW, stabbing, MVA). There is a pressing need for a local safety net organization where patients in a financial pinch can turn toward to receive free ostomy supplies. I am going to work toward developing a non-profit for such a purpose. Programs exist with commercial support from major manufacturers (Hollister Secure Start etc) but I think we need to supplement these services for patients on the edge of eligibility. No ostomate, anywhere in the world, should ever have to go without adequate supplies and care.
  • Restroom Access Law: If you have IBD and/or an ostomy in Virginia don’t count on being able to use the bathroom in a store in an emergency. This needs to change and I’l  be working toward this goal in 2016.  For those with experience on issues such as this please email me: ibdpatient2patient@yahoo.com

We are bringing wound and ostomy care at our hospital into the 21st century with patient quality of life, outcome reduction and evidence based practices in mind. Culture changes are challenging in any organization but If you have worked in a hospital system (let alone a massive one) you probably know how difficult it can be to effect any kind of change. Navigating political waters takes time but this wound care team that I work with is unique in their willingness to adopt positive change. Seeing providers so willing to listen to patient perspectives is encouraging for our health care system, and I will support this group for as long as I am involved in patient care here [hopefully a long time :)].

2 thoughts on “A year in review

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