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)