We want to partner with you!

University Hospitals Rainbow Babies &

Children’s Hospital has a long history of

partnering with patients and their families.

Since 1991, we have been working with our

Patient and Family Advisory Council

(PFAC).

We are looking for parents and caregivers

like you to join this important and exciting

group!

What is a Patient and Family Advisory

Council (PFAC)?

A Patient and Family Advisory Council is a

formal group that brings together current and

former caregivers of children who have been

cared for at Rainbow. Caregivers volunteer to

be on a PFAC and partner with the hospital

to improve the patient and family experience.

These volunteers are called Patient and

Family Advisors, or PFAs.

What is a Patient and Family Advisor?

Patient and Family Advisors (PFAs) are

those that are ready, emotionally and

mentally, to partner with the hospital to bring

about positive change.

Am I ready to be on a PFAC?

Meetings are held 10 months out of the year,

and there are many activities you might want

to join. To help you see if you are ready to

join, please see the READI™ Patient and

Family Advisor guide below:

The READI™ Patient and Family Advisor

is someone who:

Is RESPECTFUL, collaborates, speaks

up, and listens with hospital staff

Has EXPERIENCE of care at University

INPATIENT STAY?

Be Our Guest

Families with a child who is

inpatient are invited to join

members of the Rainbow

Babies & Children’s Hospital

Family Advisory Council for

a complimentary meal in the

Community Room at

Rainbow.

Lunches, 1:15-2:15p

1/27

2/24

3/23

4/27

Dinners, 5:30-6:30p

1/20

2/17

3/16

4/20

Hospitals and is able to share their

experiences to enhance care

Is APPRECIATIVE of other patients

and families and hospital staff

Is DEDICATED to enhance safety,

quality, and experience for all patients

and families

Is INVOLVED in his/her own or a loved

one’s care, and creates opportunity to

partner with the hospital and other

patients and families based on his/her

experiences

On behalf of UH Rainbow Babies &

Children’s Hospital and all of University

Hospitals, we are committed to listening and

partnering with patients and families to

enhance the care we provide. We believe

your voice and experience is an important

part of the conversation.

If you believe you are interested in joining a

PFAC, please reach out to Volunteer

Services at 216.844.1504.

Sincerely,

Chrissie Blackburn, MHA

Principal Advisor, Patient and Family

Engagement at University Hospitals &

University Hospitals Case Medical Center

Parent of a medically complex child

The Patient and Family

Advisory Council (PFAC) at UH

Rainbow Babies & Children’s

Hospital is an enthusiastic and

dedicated group of parents,

adult family members, clinicians

and hospital administrators. We

strive to be as diverse a group

as the population which UH

Rainbow Babies & Children’s

Hospital serves.

Our goal is to positively affect

operations and policies in order

to enhance the hospital

experience for all families who

have chosen Rainbow Babies &

Children’s Hospital for their

child’s care.

Working Together with Families Welcome to the first issue of Rainbow and Me,

the quarterly newsletter of the Rainbow Babies &

Children’s Hospital Patient and Family Advisory

Council. We are excited to connect with other

Rainbow families and share helpful information

to improve the lives of Rainbow patients and

families.

goals for 2015 was to increase the visibility of

FAC so that we can better support the patients

and families of Rainbow. We developed this

newsletter so that patients and families will know

they have a voice in their hospital and clinics.

We improved access to our free monthly lunches

and dinners so that inpatient families can speak

The mission of the Rainbow

Babies & Children’s

Hospital Patient and Family

Advisory Council (PFAC) is

“To Partner. To Educate. To

Lead.”

Every year, the PFAC sets

goals to achieve. One of our

with PFAC members and other families while

they are here. We shared our stories of our

children, their healthcare needs, and our

experiences with Rainbow clinicians and staff so

that they can better understand the community

they serve. We added three new family members

to our council that have

children with differing

healthcare experiences

and needs. Our council is

diverse. We’ve met with

hospital leadership and

clinicians to discuss

better care for our

children as they cross

into adulthood.

This year, we will continue the goals we set last

year and include more outreach to Rainbow

families and the larger community.

As we move through 2016, we know that the

PFAC will continue to connect our families to

yours though Rainbow.

A 50 1 ( C ) ( 3 ) NO NP RO F IT CO R PO RAT IO N

Rainbow and ME ISSUE Q1 YEAR 16 CONNECTING PATIENTS AND FAMILIES

THIS MONTH’S ISSUE

Patient & Family Engagement

Know Your Child’s Medical Team

Scrub Up to Stay Healthy

We Want to Partner with You

02

03

03

04

pregnant with my daughter, Jordyn, in 2005, she

was diagnosed with RCDP as well.

Throughout the years, we have trusted Rainbow

specialists to provide care for both Jake and

Jordyn. Each year, they see more than 10

specialists, and we consider

each and every doctor part of

our dream team. We are

blessed to have them on our

kids’ side and ours.

From the doctors and the

therapists our kids saw at

Rainbow to the countless

times they have been treated

in many areas of the hospital,

including the Emergency

Department, the Pediatric

ICU, and surgery, I truly

believe we wouldn't have

come this far, and Jake and

Jordyn wouldn't be doing as

well without our home away

from home—Rainbow Babies’ and Children's

Hospital.

I am so grateful to Rainbow and very proud to

say I am a part of the Rainbow Patient and

Family Advisory Council.

You might say that Rainbow has been my saving

grace more than once. The first time was in

December of 2002 when Dr. Warman, a genetics

doctor at Rainbow, gave me the answers I was so

desperately searching for as I questioned why

my baby boy, whom I prayed for after over four

years of trying, was not progressing and hitting

milestones.

Jake was diagnosed with a rare genetic disorder,

one that is shared by less than 62 people

worldwide. The condition is RCDP, Rhizomelic

Chondrodysplasia Punctata. When I was

Patient and Family

Engagement is actively

including the patient and

family voice at every table,

every time, with everyone.

This includes while receiving

care at the hospital or clinic, a

variety of hospital

committees, and the Family

Advisory Council. Patient and

Family Engagement helps to

strengthen a culture of Patient

and Family Centered Care.

Your voice and experiences

are valued and important!

The medical student is a college graduate and is

studying in medical school for 4 years to earn a

medical degree. Medical students learn both in the

classroom and in hospital floors and clinics. They

are closely supervised by residents and attending

physicians.

Interns are the doctors who are usually at the

bedside first thing in the morning, gathering

information and asking about how the night

went. They have finished medical school and are

in their first year of training to become experts in

the care of infants and children.

Residents have finished their intern year and are

completing their training. It may be a three-year

program or even longer. They may be leading the

discussions during rounds and supervising the

interns.

Fellows have finished residency training and have

chosen to get more training in a medical or

surgical specialty. Depending on their specialty,

they may be in charge of your child’s care.

Attending doctors have finished all residency

training and are in charge of the residents and

interns as well as the primary care of

patients. They may ask questions of the other

doctors during rounds to help teach the residents

The first line of defense against illness doesn’t come in a bottle or

a capsule; it comes straight from the faucet. Handwashing, done

correctly, can reduce the chance of becoming sick with colds or

the flu. Winter illnesses like colds and the flu are spread not just

through the air but also by touching surfaces that have germs on

them. Regular handwashing can keep these germs from entering

better ways to care for infants and children.

Consultants have finished their training as

specialists in a field of medicine or surgery

such as cardiology (the heart) or

pulmonology (the lungs). They may be in

charge of your child’s care as attending

physicians or be asked by another physician

to help out with your child’s care.

Don’t be afraid to ask any person who

comes into your child’s room who they are

and what their plans are for your child that

day. They have the best care of your child in

mind, just as you do!

Abbigail Chandler, MD

Rainbow Parent and PFAC member

the body and causing illness.

Wash with warm water and soap for at least 20 seconds,

scrubbing the palms, the back of the hand, between the

fingers and under the fingernails. Try singing “Old

MacDonald” or “Yankee Doodle” to be sure you are washing

your hands long enough to kill the germs.

If your child is in the hospital, don’t be afraid to remind

doctors, nurses and other care providers and visitors to scrub

their hands as well. We can all do our part to promote health

and wellness.

Being in the hospital can be

overwhelming. The ETeam

tool was designed by patients

and families, just like yours. It

can help to organize your

thoughts, track doctors tests,

medicines, and much more.

We welcome you to be an

active partner in your child’s

care. Ask questions and be

engaged. You know your

child best!

The ETeam stands for:

Engage yourself

Take steps to be involved

Explain what you need

Ask questions

Make sure you

understand before you

leave™

Know your child’s physician medical team

Scrub up to stay healthy

When your child is admitted to Rainbow, there will be a whole team of caregivers giving

them the best possible care. Just who are all these people? Medical students, interns,

residents, fellows, attendings, and consultants are all part of the physician medical team.

Handwashing is an important weapon in

fighting illnesses like colds and flu.

PATIENT &

ENGAGEMENT

Search "Family Advisory Council" at uhhospitals.org/rainbow Email: RBCFAC@uhhospitals.org

Phone: (216) 983-2075

My Rainbow Story Mindy Lee, a member of the Rainbow Babies & Children’s Hospital Patient and Family

Advisory Council, shares her Rainbow experience.

Contact us

Doug and Mindy Lee with Jordyn and Jake Cirner