The hidden role informal caregivers play in health care Scott Williams
Let’s put the care back into health care.
I’ve been working in the healthcare sector
for the last 15 years,
and one of the things
that drew me to this sector
was my interest in the care component
of our healthcare systems –
more specifically,
to the invaluable role played by carers.
Now, how many of you in this room
consider yourself a carer?
By this, I mean how many of you
have cared for someone
suffering from an illness,
injury or disability?
Can you raise your hand
if this is the case?
About half of the room.
I want to thank all of you
who raised your hands
for the time that you’ve spent as a carer.
What you do is extremely precious.
I am a former cared-for patient myself.
When I was a teenager,
I suffered from Lyme disease
and underwent 18 months
of antibiotic treatment.
I was repeatedly misdiagnosed:
bacterial meningitis,
fibromyalgia, you name it.
They couldn’t figure it out.
And if I’m standing here
in front of you today,
it’s because I owe my life
to the stubbornness
and commitment of one carer.
He did everything he could for me –
driving long distances
from one treatment center to another,
searching for the best option,
and above all, never giving up,
despite the difficulties he encountered,
including from a work
and quality-of-life perspective.
That was my father.
I recovered, and this is largely
thanks to his dedication.
This experience turned me
into a patient advocate.
The closer I looked, the more I saw
carers providing the same kind of support
that my father provided to me,
and playing a crucial role
in the healthcare system.
I don’t think it’s an exaggeration to say
that without informal carers like him,
our health and social systems
would crumble.
And yet, they’re largely
going unrecognized.
I am now a long-distance
carer for my mother,
who suffers from multiple
chronic conditions.
I understand, now more than ever,
the demands that caregivers face.
With aging populations,
economic instability,
healthcare system stress
and increased incidents
of long-term chronic care needs,
the importance and demands
on family caregivers
are greater than ever.
Carers all over the world
are sacrificing their own physical,
financial and psychosocial well-being
to provide care for their loved ones.
Carers have their own limits and needs,
and in absence of adequate support,
many could be stretched
to the breaking point.
Once seen as a personal
and private matter in family life,
unpaid caregiving has formed
the invisible backbone
of our health and social systems
all over the world.
Many of these carers
are even in this room,
as we have just seen.
Who are they, and how many are they?
What are the challenges
that they are facing?
And, above all, how can we make sure
that their value to patients,
our healthcare system and society
is recognized?
Anyone can be a carer, really:
a 15-year-old girl caring
for a parent with multiple sclerosis;
a 40-year-old man juggling full-time work
while caring for his family
who lives far away;
a 60-year-old man caring for his wife
who has terminal cancer;
or an 80-year-old woman
caring for her husband
who has Alzheimer’s disease.
The things carers do
for their patients are varied.
They provide personal care,
like getting someone dressed,
feeding them,
helping them to the bathroom,
helping them move about.
They also provide a significant
level of medical care,
because they often know a lot about
their loved one’s condition and needs,
sometimes better
than the patients themselves,
who may be paralyzed
or confused by their diagnosis.
In those situations,
carers are also advocates for the patient.
Also of critical importance
is the fact that carers
also provide emotional support.
They organize doctor’s appointments,
they manage finances,
and they also deal
with daily household tasks.
These challenges are challenges
that we can’t ignore.
There are currently
more than 100 million carers
providing 80 percent
of care across Europe.
And even if these numbers are impressive,
they’re most likely underestimated,
given the lack of recognition of carers.
As we have just seen,
many of you in this room weren’t sure
if you could be qualified
or considered to be a carer.
Many of you probably thought
I was referring to a nurse
or some other healthcare professional.
Also stunning
are the benefits that carers
bring to our societies.
I want to give you just one example
from Australia in 2015.
The annual value
provided by informal carers
to those suffering from mental illness
was evaluated at 13.2 billion
Australian dollars.
This is nearly two times
what the Australian government spends
on mental health services annually.
These numbers, among others,
demonstrate that if carers
were to stop caring tomorrow,
our health and social systems
would crumble.
And while the importance
of these millions of silent carers
cannot be denied,
they’ve largely been unnoticed
by governments, healthcare systems
and private entities.
In addition, carers are facing
enormous personal challenges.
Many carers face higher costs
and can face financial difficulties,
given the fact that they may not
be able to work full time
or they may not be able
to hold down a job altogether.
Many studies have shown
that often carers sacrifice
their own health and well-being
in order to care for their loved ones.
Many carers spend so much time
caring for their loved ones
that often their family
and their relationships can suffer.
Many carers report that often,
their employers don’t have
adequate policies in place
to support them.
There has been improvement, though,
in the recognition
of carers around the world.
Just a few years ago,
an umbrella organization
called the International Alliance
of Carer Organizations, or IACO,
was formed to bring together
carer groups from all over the world,
to provide strategic direction,
facilitate information sharing,
as well as actively advocate
for carers on an international level.
Private entities are also starting
to recognize the situation of carers.
I am proud that my personal engagement
and enthusiasm towards
this topic of carers
found an echo in my own workplace.
My company is committed to this cause
and has developed
an unprecedented framework
for its employees and society as a whole.
The objective is to empower carers
to improve their own health and well-being
and bring about a greater
balance to their lives.
Nevertheless, much more needs to be done
to complement these relatively
isolated initiatives.
Our societies are facing
increased health pressures,
including aging populations,
increased incidence of cancer
and chronic conditions,
widespread inequality,
amongst many others.
To confront these challenges,
policymakers must look beyond
traditional healthcare pathways
and employment policies
and recognize that informal care
will continue to form the bedrock of care.
Caring for someone should be a choice
and should be done without putting
one’s own well-being in the balance.
But to really put the care
back into health care,
what’s needed is a deep,
societal, structural change.
And this can only happen
through a change in mindset.
And this can start today.
Today, we can plant the seed for a change
for millions of carers around the world.
Here’s what I want to suggest:
when you go home today
or to the office tomorrow morning,
embrace a carer.
Thank them,
offer him or her a bit of help,
maybe even volunteer as a carer yourself
for a couple hours a week.
If carers around the world
felt better recognized,
it would not only improve
their own health and well-being
and sense of fulfillment,
but it would also improve the lives
of those that they’re caring for.
Let’s care more.
Thank you.
(Applause)