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)


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