The hidden role informal caregivers play in health care | Scott Williams

翻译人员: Echo Sun 校对人员: Yolanda Zhang

Let's put the care back into health care.

让我们将关爱重新带回医疗健康领域。

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

在过去的15年中， 我一直从事医疗护理行业，

and one of the things that drew me to this sector

将我吸引到这个行业的原因之一，

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

其实是我们医疗护理系统中的 那个关爱的成分。

more specifically,

更具体的说，

to the invaluable role played by carers.

我被那些护理者所扮演的 宝贵角色深深吸引了。

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

现在，我想问在座的各位， 有多少人认为自己是一个“护理者”？

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

我的意思是，你们当中有多少人 认为自己在照顾着

被病痛折磨，或饱受伤痛 和残疾困扰的人？

suffering from an illness, injury or disability?

Can you raise your hand if this is the case?

如果你们认为自己属于 这个范畴，请举手。

About half of the room.

在座的有一半都举起了手。

I want to thank all of you who raised your hands

我想要谢谢举起手的诸位，

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

感谢你们作为一位 “护理者”所付出的时间，

What you do is extremely precious.

你们所做的一切是非常难能可贵的。

I am a former cared-for patient myself.

从前，我自己就是一位需要别人 来关照、护理的病人。

When I was a teenager, I suffered from Lyme disease

我十几岁的时候患有莱姆病，

and underwent 18 months of antibiotic treatment.

接受过18个月的抗生素治疗。

I was repeatedly misdiagnosed:

那时候，我一次又一次地被误诊：

bacterial meningitis, fibromyalgia, you name it.

我曾经被诊断为细菌性脑膜炎、 纤维肌痛等等。

They couldn't figure it out.

医生就是不能确诊我的病因。

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

我之所以还能够出现在你们面前，

it's because I owe my life

全都是因为一名 “护工”的执着与付出，

to the stubbornness and commitment of one carer.

我的生命都是他给予的。

He did everything he could for me --

他真的为我做了 力所能及的一切 ——

driving long distances from one treatment center to another,

他常常从一个治疗中心 开长途到另一个中心，

searching for the best option,

为我寻找着最好的治疗方案，

and above all, never giving up,

最重要的是，尽管他遭遇了种种困难，

面临着来自工作、生活的压力，

despite the difficulties he encountered,

他从来、从来没有放弃。

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

That was my father.

这位“护工”其实就是我的父亲。

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

我能够从当时的病痛中康复， 很大程度上都是因为我父亲的奉献。

This experience turned me into a patient advocate.

这段经历让我变成了 一个病人权益的维护者。

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

当我更仔细地审视病人们的生活时， 我越能够看到那些护理者们

that my father provided to me,

提供着与我父亲一样的支持。

and playing a crucial role in the healthcare system.

我也越能够看到他们在医疗健康 系统中扮演着无比重要的角色。

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

我认为，丝毫不夸张地讲，

that without informal carers like him,

如果没有了像我父亲 一样的“业余”护工们，

our health and social systems

我们的医疗、健康、社会系统

would crumble.

都将面临着崩溃。

And yet, they're largely going unrecognized.

但即使如此，这些人（的贡献） 却往往不为人所知。

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

目前，我一直在异地照料我的母亲，

who suffers from multiple chronic conditions.

她罹患着多种慢性疾病。

I understand, now more than ever,

我现在愈发清晰地认识到，

the demands that caregivers face.

那些护理者所面对的巨大需求。

With aging populations,

面临着人口的老龄化、

economic instability,

经济的不稳定性、

healthcare system stress

医疗健康系统所承担的压力、

and increased incidents of long-term chronic care needs,

以及长期慢性疾病护理的需求增长，

the importance and demands on family caregivers

源自于家庭的护理者 角色变得愈发重要，

are greater than ever.

对于他们的需求也在日益增长。

Carers all over the world are sacrificing their own physical,

来自全球各地的护理者 牺牲了自己的健康、

financial and psychosocial well-being

金钱和社交生活，

to provide care for their loved ones.

为了给他们所爱的人提供照料。

Carers have their own limits and needs,

那些护理者们有自己的极限和需求，

and in absence of adequate support,

倘若没有了足够的支持，

many could be stretched to the breaking point.

他们也很有可能会因不堪重负而崩溃。

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

那些曾被视为家庭生活中 私人的，无偿的护理者们，

unpaid caregiving has formed the invisible backbone

现在已经在无形中形成了

of our health and social systems all over the world.

全球各地医疗社会系统的支柱。

Many of these carers are even in this room,

有许多护理者甚至就在我们当中。

as we have just seen.

正如刚才举手的那些人。

Who are they, and how many are they?

他们到底是谁？他们到底有多少人？

What are the challenges that they are facing?

他们正在面临着哪些挑战？

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

而更重要的是， 我们如何才能保证他们在病人、

our healthcare system and society

在我们的医疗保健系统 以及社会中的价值

is recognized?

能够被知晓和认可呢？

Anyone can be a carer, really:

诚然，每个人都可以成为一名护理者：

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

一名15岁的小女孩照顾着 患有多重硬化疾病的病人；

a 40-year-old man juggling full-time work

一个40岁的男人一边做着职工作，

一边要照顾他异地的家庭；

while caring for his family who lives far away;

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

一位60岁的爷爷照顾着 他罹患晚期癌症的妻子；

or an 80-year-old woman caring for her husband

亦或是一位80岁的老奶奶照顾着她

who has Alzheimer's disease.

患有阿尔茨海默症 （俗称老年痴呆）的丈夫。

The things carers do for their patients are varied.

护理者为病人们做出的事情或许不同，

They provide personal care,

他们或许是照料日常起居，

like getting someone dressed,

比如帮助病人们更衣、

feeding them,

喂食、

helping them to the bathroom,

如厕、

helping them move about.

行动。

They also provide a significant level of medical care,

他们也提供着重要的医疗护理，

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

因为护理者们通常比 病人们自己还要了解

sometimes better than the patients themselves,

他们的病情和需求，

who may be paralyzed or confused by their diagnosis.

因为病人们可能会因为 自己的病症而失去信心或感到困惑。

In those situations,

在这种情况中，

carers are also advocates for the patient.

护理者们又是他们的代言人。

Also of critical importance

另外还有不可忽视的一点，

is the fact that carers also provide emotional support.

就是护理者们是病人们的精神支柱，

They organize doctor's appointments,

他们安排与医生的会诊，

they manage finances,

管理着家庭财务，

and they also deal with daily household tasks.

也需要与日常家务打交道。

These challenges are challenges that we can't ignore.

他们所面临的这些挑战 是我们不能忽视的。

There are currently more than 100 million carers

在欧洲，目前有一亿的护理者，

providing 80 percent of care across Europe.

提供着百分之八十的护理工作。

And even if these numbers are impressive,

尽管这样的数字已经十分可观，

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

但因为对他们的忽视， 这个数字仍然很有可能被低估了。

As we have just seen,

正如我们刚刚所看到的，

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

在座的很多人 也不确定自己是否够格，

or considered to be a carer.

或者自己是否能被算为护理人。

Many of you probably thought I was referring to a nurse

你们很多人或许觉得 我指的是一位护士，

or some other healthcare professional.

或者是其他在医疗健康界的职业。

Also stunning

同样令人震撼的是，

are the benefits that carers bring to our societies.

这些护理者为我们的社会 带来的巨大福利。

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

我想给你们一个2015年 发生在澳大利亚的例子。

The annual value provided by informal carers

根据评估，业余护工在一年中，

to those suffering from mental illness

为那些患有精神疾病的人 提供的帮扶

具有132亿澳元的价值。

was evaluated at 13.2 billion Australian dollars.

This is nearly two times what the Australian government spends

这几乎是澳大利亚政府 在心理健康服务上

on mental health services annually.

花费的两倍。

These numbers, among others,

这些数字，

demonstrate that if carers were to stop caring tomorrow,

体现出倘若明天这些 护理者们停止了工作，

our health and social systems would crumble.

我们的健康、医疗 与社会系统将会瘫痪。

And while the importance of these millions of silent carers

虽然这些千百万的幕后护理者的

cannot be denied,

重要性不可否认，

they've largely been unnoticed

他们却常常被政府、

by governments, healthcare systems

被医疗健康系统

and private entities.

和私营企业忽视。

In addition, carers are facing enormous personal challenges.

除此之外，护理者们面临着 巨大的个人挑战。

Many carers face higher costs and can face financial difficulties,

很多护理者们面临着 更高的支出以及经济困难，

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

因为他们可能无法进行全职工作，

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

或者甚至都不能工作。

Many studies have shown

很多研究表明，

that often carers sacrifice their own health and well-being

护理者们为了照顾他们所爱的人，

in order to care for their loved ones.

牺牲了自己的健康和幸福。

Many carers spend so much time caring for their loved ones

许多的护理者们在 家庭关系上可能会出现隔阂，

that often their family and their relationships can suffer.

因为他们为自己所爱的人 付出了那么多时间。

Many carers report that often,

许多护理者们表示，

their employers don't have adequate policies in place

在职场，他们的雇主 常常没有足够的政策

to support them.

来支持他们。

There has been improvement, though,

好在情况已经有了改善，

in the recognition of carers around the world.

全世界的护理者们都在 慢慢地被世人所知。

Just a few years ago, an umbrella organization

就在几年前，一个名叫 国际护理者联盟组织（IACO）的

called the International Alliance of Carer Organizations, or IACO,

联合机构被建立了起来，

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

将全球各地的护理者们团结在一起，

to provide strategic direction,

提供战略性方向、

facilitate information sharing,

促进信息共享，

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

以及在国际舞台上 伸张护理者们的权益。

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

私人企业也开始 重视护理者们的情况。

I am proud that my personal engagement

我为我个人参与到照理者这个问题

and enthusiasm towards this topic of carers

所付出的热心而感到自豪，

found an echo in my own workplace.

也在我自己的工作单位得到响应。

My company is committed to this cause

我的公司对这个问题做出承诺，

and has developed an unprecedented framework

并为其员工以及整体社会开发出了

for its employees and society as a whole.

一个史无前例的构架。

The objective is to empower carers

目标是要让照理者有能力

to improve their own health and well-being

来改善他们自己的健康和生计，

and bring about a greater balance to their lives.

并让他们在生活中实现更好的平衡。

Nevertheless, much more needs to be done

不过这还远远不足以

to complement these relatively isolated initiatives.

完善这些相对孤立的计划方案。

Our societies are facing increased health pressures,

我们的社会正在面临 越来越大的健康压力，

including aging populations,

包括人口老龄化、

increased incidence of cancer and chronic conditions,

癌症和慢性病案例的增多、

widespread inequality,

普遍的不平等，

amongst many others.

及许多其他状况。

To confront these challenges,

若要对抗这些挑战，

policymakers must look beyond traditional healthcare pathways

政策制订者不能单单 关注传统健康护理的途径

and employment policies

以及雇佣政策，

and recognize that informal care

他们要承认非正式护理

will continue to form the bedrock of care.

会形成持续护理。

Caring for someone should be a choice

照顾某个人，应该是一种选择，

and should be done without putting one's own well-being in the balance.

而且即便要做，也不应该以 自己的切身利益为代价。

But to really put the care back into health care,

但如果要真的让照顾 回归到健康护理当中，

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

需要的是社会结构上的深刻改变。

And this can only happen through a change in mindset.

若要实现，必定要在心态上做改变。

And this can start today.

而这种改变此时此刻就可以发生。

Today, we can plant the seed for a change

今天，我们能种下改变的种子，

for millions of carers around the world.

为了全世界数百万的护理者。

Here's what I want to suggest:

我想提出倡议：

when you go home today

今天你回家时，

or to the office tomorrow morning,

或是明天早上到办公室时，

embrace a carer.

拥抱一位护理者。

Thank them,

谢谢他们，

offer him or her a bit of help,

提供他或她一点协助，

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

也许自己每周能花上几小时 去当护理志愿者。

If carers around the world felt better recognized,

若全世界护理者 都能感受到他们的贡献被认可，

it would not only improve their own health and well-being

不仅仅他们自己的健康、 利益和满足感

and sense of fulfillment,

可以获得改善，

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

被他们所照顾的人的 生活也能够获得改善。

Let's care more.

多关心他们一些吧。

Thank you.

谢谢。

(Applause)

（掌声）