Creating a better hospital experience

[Heather Still]

It's been a year now since we've had a inpatient stay with Ryan. I try not to say that out loud because I think it's bad luck, but I guess typing is really not out loud. For the past few weeks I have been following what I believe is the first patient since Ryan at our Children's Hospital with an Atypical HUS diagnosis. While reading updates on this little beauty's status I am quickly reminded of all the horrors that accompany the initial diagnosis. Not only the questions about the illness, but the financial stress and the emotions of having another little one at home that you're missing dearly, the stress on your marriage and everything else. So, me being me, I get a brain storm. How do I help create a better hospital experience for families like this?

As many of you know, I have helped to raise $70,000 toward the Foundation for Children with Atypical HUS in the past 6 years. This year, my mother in law has decided to do a motorcycle "Ride for Ryan" with the proceeds going to the foundation. Well, this is a great idea but it leaves our golf tournament left hanging because I believe 2 events for the same cause is too much for our small community. Fundraisers rely heavily on local business donations and I don't think they'd like seeing me twice in one year for the same cause.

So, what do I do now? Well, I could dive into this motorcycle thing with my mother in law. But, I'm sure she'd agree with me that I should let this be her baby as we sometimes tend to butt heads in planning for a big event. And then it hits me while reading an update on the little girl I'm following and as I'm typing a quick note to her mom about things getting better - I need to do something big to help all families like this one. When Ryan got sick his hospital wasn't a children's hospital. Our care was top notch, but at times we felt "uncatergorized". He was a Nephrology patient in a Hematology/Oncology unit, which I believe is common for many aHUS patients. I watched during all of this and saw the patients being admitted to this unit got free parking passes, coupons for the cafeteria, visitor badges so they didn't have to stop at the security check point, and more. It was automatic for the H/O families to receive these things, where I had to ask if I wanted any help. So I email one of Ryan's nephrologists, who happens to also be the head of Pediatrics at the newly built Children's Hospital, and tell him of my brainstorm of what can I do to better a families hospital stay. I was focused on helping Nephrology patients only, but in our exchange of emails we both decide it needs to be non specified in order to avoid families like ours being left out of benefits like we were.

Since Ryan's initial stay almost 8 years ago alot has already changed for the better. The new Children's Hospital has what they call a "Family Resource Center" where many of the concerns I have are already addressed. There is a medical library and is a point of contact for people to find information about the resources available to them. So I guess our goal is to "better" the Family Resource Center. To create a system where there's less searching and more information provided from the start. To create a parent network, connecting families with similar illnesses. Making sure the chronically ill child has a proper care plan, an emergency plan, and travel plan. To offer tips to parents on how to best manage a long term hospitalization. I have a million ideas floating through my head right now. All these ideas will be implemented to all patients upon admission, not based on diagnosis.

So, after that long winded, rambling explaination I'll tell you why I'm here!!! I need your input before my meeting with Dr. W. next month. I need to know any issues any of you thought needed to be addressed throughout your hospital journey. I'm looking at all aspects, so throw me anything you've got. During your hospital stays what could have been done to ease your stress? What resources were available to you and how did you know about them? Dialysis patients - need your input a lot since I don't have experience there. Dig deep and toss me some good ideas!!!

Thanks for your help!!!!!

[Colette Ann Frysz]

Heather,
We have established at the Women and Children's Hospital of Buffalo a Family Advisory Council. This council was established to better the care of patients and their families. I have been a member of this council since its inception. There are many things you can do that cost little. We've been trying to create packets for parents to make them aware upon admission of the services available to them and in the immediate community. We've established a web page to help forward this. We are also looking into a family resouce center but our needs and barriers are space and other things. We do however have a research library in the hospital that parents can make use of if they are aware of it. We've gotten together some note pads for parents to use while they are in the hospital which will assist them in the care of their child and communication with their doctors. Much of what is in the packet received upon admission has been the brainstorm of our council. Parking here is always an issue. We do have valet parking but it has been trouble some and we've adddressed these issues as a council to the hospital.

As a dialysis patient the most cumbersome thing we'd experience was having to check in to security all the time. We were there three times a week every week and still had to do so. We asked if there could be some special id card we could show to security upon arrival so we could flash and pass. This was never fully resolved but there is the idea. Eventurally we did get a handicap tag and parking was a bit easier but still it is a physical problem here. But parking I think is an issue also for dialysis patients everywhere. Either you are charged a full shot for ten minutes of parking or you can't find a place at all. Getting some kind of discounted or prorated parking for dialysis patients would be most helpful. The best would be if your could get designated dialysis patient parking.

We've also set up a guideline for parents so they can be empowered to communicate effectively with the medical personel. We found that this can be a most difficult barrier for patients newly admitten and not ever having experienced a hospital before. This is a small thing you can do for all patients. We listed some general questions to ask in a pamphlet so they can communicate to their doctors and nurses. Also we found that many new patients do not understand the medical heirarchy of positions. We developed a brief explanation of positions that the patient and family may encounter during their stay. Such as who is the attending physician? Who is a resident? Who is the charge nurse? and so on. This bit of information goes a long way for the parent and family.

Collecting info on the immediate community is also most helpful. Like what restaurants are around the area if I can't get cafeteria service. Where could I get personal care items. Things like that.

Hope this helps a bit. Good luck!!

[Linda Burke]

Your positive outlook and outreach to others is a fabulous role model for the rest of us Heather - reminding us all of the importance to give hope, comfort, and support to others. I'll be sending along a (lenghty) message - know that we're all so proud of your efforts with this!!

[Cheryl Biermann]

Heather, our children's hospital just installed a Ronald McDonald ROOM at the top of the hospital...a place with a kitchenette stocked with some foods, instant oatmeal, coffee, ect., washers, dryers and laundrey detergent, recliners, lots of lighting,a large flat screen t.v. AND two computers with internet access for families-this is a great resourse, especally if nephrology knows the web-sites for our patients and gives them to the patients/parents...or if oncology knows their good sites, ect. Each department could give a list to volunteeers, (which the Ronald Mcdonald people and the hospital provide), if questions are directed to them about how to find such sites. They might also have a laminated list of such approved sites to ensure the information being accessed has good science to back it up! You might also address such things as making sure children have access to some type of tutoring. Good Luck!

[Kortnee Fornetti]

Hi Heather! Kaleb stayed at the Childrens Hospital of Wisconsin and they had so many great programs for the kids there. They also had a Family Resource Center with literature and information about diseases and other medical information. They were just starting to collect books for leisure reading also so I donated the books I read while we were there. Another great resource was that they had cameras you could check out so you could post pictures on your blog. This was very helpful as we definitely did not think to pack a camera and then family and friends back home could see how Kaleb was doing. For the kids, they had Pet Therapy Dogs which were wonderful for cheering up the kids, especially when they miss their own dogs at home. They also had Child Life volunteers who would come visit Kaleb and ask what kind of activities he liked. They would then bring toys and activities to Kaleb as he was not able to leave his bed when on dialysis. They also had a music therapist who played guitar for him and she had a little drum she let him play along with her. I was very impressed at how much the hospital did to keep Kaleb happy. Hope these are some ideas that are helpful!

[Phyllis Ann Talbot]

Heather - first of all - WOW $70,000?!?!? That's AMAZING! OK - on to the main point - I think this is a GREAT idea! I can tell you off the top of my head a couple of things that were 'good' at our hospital - we got lucky that there is an amazing Children's hospital close to us and we had great dr's from the beginning - I KNOW there were problems too though - let me think on those:
1) for long stays - any 'activities' they provide for the kids that help to keep you all sane - and most importantly to include siblings - alot of the time Hyde may not have felt well enough to do stuff - but Ruth was alway up for bingo, art projects, gymboree classes, etc, etc. It helped her to not think of the hospital that Hyde was at all the time as a totally 'scary' place
2) the other thing that was the best advice we got - and I think would be important for all new parents of patients at the hospital is to get a notebook and write everything down - Dr's names, nurses names, tests run, lab results, procedures done, even feelings and impressions. It's great to have for so many reasons - you have the info to go research for yourself, if there's a new dr on, etc - you have all the information more easily accessible than they do sometimes - it also helps get the parents in the mindset of they need to own their child's care - b/c no matter how great the facility - the parents care more about their child than anyone else.
3) we tried to do 'family dinners' at the hospital as often as we could to try to keep things a little bit normal - this is hard during flu season when they won't let younger siblings come to the rooms and obviously impossible in ICU but it helped us when we could.
4) let parents know (if it's available there) that the nurses station often has menus of restaurants that deliver to the hopsital - when you are there for long stays - it's nice to eat something besides hospital food when you can.
5) computer access - if your hopsital has wi-fi or has a set computer lab for parents - it's good to let them know - also if they team with carepages or caring bridge - it's great to let the parents know - that saved us LOTS of phone calls by us and to us - being able to update everyone all at once.

Sorry for the book Heather - your idea just got me excited - I'll yell as I think of more stuff!