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Let's put the care back into healthcare.

2
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I've been working in the healthcare sector
for the last 15 years,

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and one of the things
that drew me to this sector

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was my interest in the care component
of our healthcare systems,

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more specifically to the invaluable role

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played by carers.

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Now, how many of you in this room
consider yourself a carer?

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By this I mean, how many of you
have cared for someone

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suffering from an illness,
injury or disability?

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Can you raise your hand
if this is the case?

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About half of the room.

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I want to thank all of you
who raised your hands

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for the time that you've spent as a carer.

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What you do is extremely precious.

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I am a former cared for patient myself.

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When I was a teenager,
I suffered from Lyme disease

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and underwent 18 months
of antibiotic treatment.

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I was repeatedly misdiagnosed:

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bacterial meningitis,
fibromyalgia, you name it.

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They couldn't figure it out,

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and if I'm standing here
in front of you today,

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it's because I owe my life

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to the stubbornness
and commitment of one carer.

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He did everything he could for me,

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driving long distances
from one treatment center to another,

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searching for the best option,

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and above all never giving up,

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despite the difficulties he encountered,

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including from a work
and quality-of-life perspective.

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That was my father.

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I recovered, and this is largely
thanks to his dedication.

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This experience turned me
into a patient advocate.

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The closer I looked, the more I saw
carers providing the same kind of support

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that my father provided to me,

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and playing a crucial role
in the healthcare system.

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I don't think it's an exaggeration to say

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that without informal carers like him,

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our health and social systems

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would crumble.

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And yet, they're largely
going unrecognized.

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I am now a long-distance
carer for my mother,

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who suffers from multiple
chronic conditions.

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I understand, now more than ever,

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the demands that caregivers face.

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With aging populations,

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economic instability,

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healthcare system stress,

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and increased incidents
of long-term chronic care needs,

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the importance and demands
on family caregivers

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are greater than ever.

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Carers all over the world
are sacrificing their own physical,

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financial, and psycho-social wellbeing

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to provide care for their loved ones.

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Carers have their own limits and needs,

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and in absence of adequate support,

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many could be stretched
to the breaking point.

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Once seen as a personal
and private matter in family life,

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unpaid caregiving has formed
the invisible backbone

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of our health and social systems
all over the world.

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Many of these carers
are even in this room,

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as we have just seen.

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Who are they, and how many are they?

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What are the challenges
that they are facing?

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And, above all, how can we make sure
that their value to patients,

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our healthcare system,
and society is recognized?

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Anyone can be a carer really:

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a 15-year old girl caring
for a parent with multiple sclerosis;

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a 40-year old man juggling full-time work

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while caring for his family
who lives far away;

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a 60-year old man caring for his wife
who has terminal cancer;

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or an 80-year old woman
caring for her husband

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who has Alzheimer's disease.

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The things carers do
for their patients are varied.

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They provide personal care,

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like getting someone dressed,

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feeding them,

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helping them to the bathroom,

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helping them move about.

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They also provide a significant
level of medical care,

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because they often know a lot about
their loved one's condition and needs,

81
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sometimes better
than the patients themselves,

82
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who may be paralyzed
or confused by their diagnosis.

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In those situations,

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carers are also advocates for the patient.

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Also of critical importance

86
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is the fact that carers
also provide emotional support.

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They organize doctor's appointments,

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they manage finances,

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and they also deal
with daily household tasks.

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These challenges are challenges
that we can't ignore.

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There are currently
more than 100 million carers

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providing 80 percent
of care across Europe,

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and even if these numbers are impressive,

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they're most likely underestimated
given the lack of recognition of carers.

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As we have just seen,

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many of you in this room weren't sure
if you could be qualified

97
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or considered to be a carer.

98
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Many of you probably thought
I was referring to a nurse

99
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or some other healthcare professional.

100
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Also stunnning

101
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are the benefits that carers
bring to our societies,

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and I want to give you just one example
from Australia in 2015.

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The annual value
provided by informal carers

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to those suffering from mental illness

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was evaluated at 13.2 billion
Australian dollars.

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This is nearly two times
what the Australian government spends

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on mental health services annually.

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These numbers, among others,

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demonstrate that if carers
were to stop caring tomorrow,

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our health and social systems

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would crumble.

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And while the importance
of these millions of silent carers

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cannot be denied,

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they've largely been unnoticed

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by governments, healthcare systems,

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and private entities.

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In addition, carers are facing
enormous personal challenges.

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Many carers face higher costs
and can face financial difficulties,

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given the fact that they may not
be able to work full-time

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or they may not be able
to hold down a job altogether.

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Many studies have shown
that often carers sacrifice

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their own health and well-being

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in order to care for their loved ones.

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Many carers spend so much time
caring for their loved ones

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that often their family
and their relationships can suffer.

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Many carers report that often

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their employers don't have adequate
policies in place to support them.

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There has been improvement though

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in the recognition
of carers around the world.

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Just a few years ago,
an umbrella organization

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called the International Alliance
of Carer Organizations, or IACO,

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was formed to bring together
carer groups from all over the world,

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to provide strategic direction,

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facilitate information sharing,

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as well as actively advocate
for carers on an international level.

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Private entities are also starting
to recognize the situation of carers.

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I am proud that my personal engagement

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and enthusiasm towards
this topic of carers

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found an echo in my own workplace.

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My company is committed to this cause,

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and has developed
an unprecedented framework

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for its employees and society as a whole.

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The objective is to empower carers

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to improve their own health and wellbeing

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and bring about a greater
balance to their lives.

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Nevertheless, much more needs to be done

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to complement these relatively
isolated initiatives.

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Our societies are facing
increase health pressures,

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including aging populations,

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increased incident of cancer
and chronic conditions,

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widespread inequality,

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amongst many others.

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to confront these challenges,

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policymakers must look beyond
traditional healthcare pathways

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and employment policies

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and recognize that informal care

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will continue to form the bedrock of care.

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Caring for someone should be a choice,

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and should be done without putting
one's own wellbeing in the balance.

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But to really put the care
back into the healthcare,

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what's needed is a deep,
societal, structural change,

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and this can only happen
through a change in mindset.

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And this can start today.

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Today, we can plant the seed for a change

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for millions of carers around the world.

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Here's what I want to suggest:

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when you go home today,

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or to the office tomorrow morning,

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embrace a carer.

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Thank them,

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offer him or her a bit of help,

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maybe even volunteer as a carer yourself
for a couple hours a week.

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If carers around the world
felt better-recognized,

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it would not only improve
their own health and wellbeing

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and sense of fulfillment,

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but it would also improve the lives
of those that they're caring for.

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Let's care more.

178
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Thank you.

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(Applause)