Monday, June 12, 2017

Child & Family Centered Care Week at Sick Kids Hospital

Last week I had the incredible opportunity to be a part of a panel discussion on Engaging Patients as part of Child & Family Centered Care Week at Sick Kids Hospital. It was an amazing honor to give a
voice to the other patients in the hospital and their families.

I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)



★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.

My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.

Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.

Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.

Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.

I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.

But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.

Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"

For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"

There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.

Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.

When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.

I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.

I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.

But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.

Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.

The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.

Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★

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