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Tanya, I'm Denis Daneman,
I'm Chief of Pediatrics at the Hospital for Sick Children,
and with us today also is Eyal Cohen,
one of the general pediatricians at the hospital
and we're here to discuss issues to do with complex care.
So Tanya, why don't you give us a little insight
into what's gone on in yours and Amanda's life,
and then we'll try to bring together
the needs from the complex care initiative
and how it's affected you.
Sure.
As a family,
we kind of feel before the complex clinic
that we were kind of coordinating things
and that we were not...
We were trying our best.
How many doctors would you be seeing
-- not on one day, or at the same time,
but over the space of a year?
How many different types of doctors?
Probably six -- eight doctors.
So your Pediatrician...
Pediatrician, neurologist, GI... gastroenterologist?
Eye doctor... for the bones it's called?
Orthopedic Surgeon.
Orthopedic Surgeon.
We have also therapies
-- occupational therapy or dietician and all that,
and at home we have files and files of Amanda.
So as a family we just do the best we can,
but when the complex clinic came along it changed a lot of that.
"Hi Amanda."
Eyal, maybe you can define what complex care is about,
what the complex care initiative is,
and why do we need an initiative, and why now?
The best way probably to describe it is,
I guess the old Indian fable
of the three blind men and the elephant.
Have you guys heard of that before?
No. But we'd like to hear it.
So, three blind men who come up to an elephant
and they all feel different parts of the elephant.
So one man feels the tail and says, "This must be a snake."
One man feels one of the legs of the elephant and says,
"This must be a giraffe."
The way we function in health care has been in many ways a similar sort of thing.
We've become so hyper-specialized
that we sometimes lose sight of the fact
that there's still a person who has very unique
and sometimes complicated needs.
And I just imagined my daughter's going to have a tube in her stomach.
And I was kind of fighting with the dietician
because Amanda was having so many seizures
that we couldn't feed her by mouth anymore.
"Mom, what's up with that?"
"It's gone."
So I can feel that she is still very stiff, like her hands.
Until she relaxes, then I know the seizure is gone.
This is the medication for her acidity,
because she gets a lot of acidity...
Her seizure medication.
We have wonderful things that have been able to keep children alive
-- we haven't done as good a job
at dealing with what the consequences of those sorts of things are,
particularly for families, who are becoming more and more
kind of like health care experts.
"Could you bring her up a little bit more? Thanks."
And she was about four here,
able to sit without any support, now she has scoliosis.
The scoliosis has advanced quite a bit,
and Amanda can't sit supporting herself.
When we're talking about the complex chronic care initiative,
we're not really talking about the child with diabetes,
which is a complex chronic disease;
or the child with cystic fibrosis,
or the child with inflammatory bowel disease,
or the child with rheumatoid arthritis.
We're talking about the child with more than one of those and more yet.
So one child will need neurologists,
ophthalmologists, urologists, etc.,
and another child will need another set of specialists,
but we've got to have the coordination that allows this to take place.
So what if you have diabetes and cystic fibrosis,
or diabetes and cerebral palsy?
It's those sorts of kids that haven't fit into one nice little silo of care,
that have really fallen through the cracks.
You know if you run a busy clinic, a busy office,
you're seeing dozens of patients every day
-- and they don't have access to everything.
How can a doctor 300 miles away
pick up the phone and call the different specialists
unless they have that sort of open door approach?
So I think what the health care system in general needs to do
is tailor models of care and levels of care
to different patient populations.
And perhaps it won't be "not complex" and "complex".
Perhaps there will be different levels of complexity
and different care models.
I mean this is the holy grail in health care, right?
Seamless integration of information,
ideally owned by the patient themselves.
So it's a piece of paper that I take everywhere.
Now if there's an issue,
we go to the hospital, we arrive,
we've got the complex care information,
we hand it over,
and then I don't have to do a run-down
of all of Mikka's complications,
and how one thing has led to another.
I can't even say how much time we spend in medical appointments,
and phone calls, and...
it's just... it's hours.
You know, even if I'm used to it, and I understand all of it,
it is mentally exhausting to have to explain that to somebody new
every time we have to do it again.
So with the complex care form,
in the way that I would describe it as a constant dialogue--
it is changing, to describe what new issues have arisen,
or what new medications need to be added.
And we can move on to the issue at hand without wasting time.
It's just an easy interaction.
It's very difficult to get effective services
when someone doesn't understand what your issues are.
If you come through the door and talk to a practitioner
or talk to someone in a different sector,
like the educational, and say,
"I want to get my child in this particular school",
and the school says,
"Sorry, we can't deal with your child's health issues";
these sort of documents say, "Yeah, you can.
This is what you need to do: A, B, C, and D."
So the idea is to build relationships with families;
to help empower them to coordinate care for their children
in a way that is the most effective and efficient way possible.
So, Tanya, before the complex care initiative was developed,
if you could have written the policies for a new clinic,
what were your needs?
What did you perceive your needs to be?
You said you thought coordination was necessary.
Many times, we just felt exhausted sometimes.
To think about, would this have maybe to do with that?
Should we ask the doctor, maybe she will refer us to that?
We tried. We talked to a pediatrician outside the hospital
and we said we would like for you to coordinate,
because there are a lot of doctors that we see at the hospital,
and if you could do that for us...
But it's not easy to have one of your patients
be so complex like Amanda
and coordinate all the services
and who has all that extra time?
You know, it just doesn't happen.
'Maze' is the word that I've heard one parent use
of the things they have to go through to get from point A to point B.
So many different services.
So many different providers, and so many different places,
and an inability to be able to put it all together.
Well, the families put it all together.
That's what ends up happening.
But in our system there has never been a well-constructed system
for someone to help facilitate that for families.
Before you joined the complex care initiative,
how frequently was Amanda being admitted into hospital
for infections, or...?
Many times.
If it wasn't an pneumonia it would be her seizures.
It's been for many things that Amanda has been admitted to the hospital
-- many times in a year.
And since you joined this clinic
and the support of Dr. Coffey and the other members of the team?
It's been much better.
You know, we're working as a team
and I feel part of the team because I give my input,
in what we see with Amanda at home.
In trying to help as much as we can
and give them, as best of our knowledge, information of what we see,
it's been much better.
Amanda's health has been much better.
Good.
We call it a Care Plan.
And basically what it is, is a medical summary of each child.
So the children we take care of
have typically spent a lot of time in hospital,
had multiple admissions,
had multiple clinic visits...
and to go through that, volumes of chart,
you know they'd need a wheelchair
to push around their volumes of chart
-- and it's difficult for people to look through that
in a timely manner.
So the Care Plan is a summary of all of that.
And it summarizes basically their medical history,
and our hope is that it helps facilitate transitions
through the health care systems.
In the long run what it's going to do
is save the health care system
because these children are going to be healthier,
they're going to be more able to be cared for in the community,
or in community hospitals, or preferably at home,
and they're going to need to come to
the tertiary health care center much less often.
So a little bit of resourcing will go a long way to major savings.
But in the last resort it's not a financial issue that's important.
It's the care of these children,
the best care of these children
-- that's the important factor over here.
So we've just started.
This is the beginning.
The first 160 children here in the satellites,
and it's had a major impact on them as Tanya has said.
How big an enterprise do we need
to make sure that we reach all the children that could benefit?
This is relative to other interventions,
not a very expensive intervention.
The model we've developed in our pilot clinics
has basically one nurse practitioner,
working with a local community of pediatricians
who services two different pilot sites.
So this is an issue of human rights in a way,
that these children deserve something
in an absence of anything else within our health care system
other than hodge-podge care.
As far as the overall cost of it
-- again, we're talking basically about adding a salary
of a single nurse practitioner per 80 to 100 children.
It is, relative to other things we do in the hospital,
this is not a lot of money.
I don't know if that answered your questions?
That answered my questions.