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

Prevodilac: Jelena Delibasic Lektor: Tijana Mihajlović

Let's put the care back into health care.

Hajde da zdravstvenu negu vratimo zdravstvu.

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

Već 15 godina radim u zdravstvu,

and one of the things that drew me to this sector

i ono što me je privuklo ovom sektoru

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

bila je komponenta nege u sistemu zdravstva

more specifically,

preciznije, dragocena uloga koju imaju negovatelji.

to the invaluable role played by carers.

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

Sad, koliko vas u ovoj prostoriji sebe smatra negovateljem?

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

Ovim mislim, koliko vas je brinulo o nekom

suffering from an illness, injury or disability?

ko je bolestan, povređen ili invalid?

Can you raise your hand if this is the case?

Možete li podići ruku ako jeste?

About half of the room.

Oko polovina vas ovde.

I want to thank all of you who raised your hands

Želim da zahvalim svima vama koji ste podigli ruku

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

zbog vremena koje ste proveli kao negovatelji.

What you do is extremely precious.

Ono što radite je izuzetno dragoceno.

I am a former cared-for patient myself.

Ja sam bio pacijent koga su negovali.

When I was a teenager, I suffered from Lyme disease

Kada sam bio tinejdžer, bolovao sam od lajmske bolesti

and underwent 18 months of antibiotic treatment.

i 18 meseci primao antibiotike.

I was repeatedly misdiagnosed:

Iznova su mi davali pogrešnu dijagnozu:

bacterial meningitis, fibromyalgia, you name it.

bakterijski meningitis, fibromialgija, štagod vam padne na pamet.

They couldn't figure it out.

Nisu mogli da pronađu od čega bolujem.

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

I danas stojim ovde pred vama,

it's because I owe my life

jer svoj život dugujem

to the stubbornness and commitment of one carer.

upornosti i posvećenosti jednog negovatelja.

He did everything he could for me --

Za mene je uradio sve što je mogao,

driving long distances from one treatment center to another,

vozio me kilometrima od jednog zdravstvenog centra do drugog,

searching for the best option,

tragao za najboljom opcijom,

and above all, never giving up,

a iznad svega, nikada nije odustao,

despite the difficulties he encountered,

uprkos teškoćama na koje je nailazio,

kako u pogledu posla, tako i kvaliteta života.

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

That was my father.

On je moj otac.

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

Oporavio sam se, i to najviše zahvaljujući njegovoj posvećenosti.

This experience turned me into a patient advocate.

Ovo iskustvo me je pretvorilo u advokata za pacijente.

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

Što sam pažljivije posmatrao,

više sam zapažao negovatelje koji pružaju istu podršku

that my father provided to me,

koju je moj otac meni dao,

and playing a crucial role in the healthcare system.

i koji igraju krucijalnu ulogu u zdravstvenom sistemu.

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

Bez preterivanja ću reći

that without informal carers like him,

da bez neformalnih negovatelja kao što je on

our health and social systems

naši zdravstveni i socijalni sistemi

would crumble.

bi propali.

And yet, they're largely going unrecognized.

A opet, njima se u velikoj meri ne odaje priznanje.

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

Ja sada na daljinu brinem o svojoj majci,

who suffers from multiple chronic conditions.

koja boluje od više hroničnih bolesti.

I understand, now more than ever,

Sada više nego ikada razumem,

the demands that caregivers face.

zahteve sa kojima se suočavaju negovatelji.

With aging populations,

Uz populaciju koja stari,

economic instability,

ekonomsku nestabilnost,

healthcare system stress

stres u zdravstvenom sistemu

and increased incidents of long-term chronic care needs,

i sve više potreba u dugoročnoj hroničnoj nezi,

the importance and demands on family caregivers

važnost i zahtevi stavljeni pred porodične negovatelje

are greater than ever.

su veći nego ikada.

Carers all over the world are sacrificing their own physical,

Negovatelji širom sveta žrtvuju svoju fizičku,

financial and psychosocial well-being

finansijsku i psihosocijalnu dobrobit

to provide care for their loved ones.

kako bi pružili negu onima koje vole.

Carers have their own limits and needs,

Negovatelji imaju svoja sopstvena ograničenja i potrebe,

and in absence of adequate support,

a u odsustvu adekvatne podrške,

many could be stretched to the breaking point.

mnogi od njih bi došli do tačke pucanja.

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

Kada se ovo sagleda kao lična i privatna stvar porodice,

unpaid caregiving has formed the invisible backbone

neplaćena nega stvara nevidljivu srž

of our health and social systems all over the world.

našeg zdravstvenog i socijalnog sistema širom sveta.

Many of these carers are even in this room,

Mnogi od ovih negovatelja su čak u ovoj prostoriji,

as we have just seen.

kao što smo upravo videli.

Who are they, and how many are they?

Ko su oni i koliko ih ima?

What are the challenges that they are facing?

Sa kojim izazovima se oni suočavaju?

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

A, iznad svega, kako možemo da obezbedimo da vrednost koju pružaju pacijentima,

our healthcare system and society

našem zdravstvenom sistemu i društvu

is recognized?

bude priznata?

Anyone can be a carer, really:

Svako može biti negovatelj, zaista:

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

15-godišnja devojčica koja brine o roditelju obolelom od multiple skleroze;

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

40-godišnji muškarac koji žonglira između stalnog posla

while caring for his family who lives far away;

i brige o svojoj porodici koja živi daleko;

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

60-godišnji muškarac koji brine o svojoj ženi sa neizlečivim kancerom

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

ili 80-godišnja žena koja brine o svom mužu

who has Alzheimer's disease.

koji ima Alchajmerovu bolest.

The things carers do for their patients are varied.

Različite su stvari koje negovatelji rade za svoje pacijente.

They provide personal care,

Oni pružaju ličnu negu,

like getting someone dressed,

kao što je oblačenje,

feeding them,

hranjenje,

helping them to the bathroom,

pomoć pri odlasku u toalet,

helping them move about.

pomoć pri kretanju.

They also provide a significant level of medical care,

Oni takođe pružaju značajan nivo medicinske nege,

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

jer obično znaju dosta o stanju i potrebama svojih najbližih,

sometimes better than the patients themselves,

ponekad znaju bolje od samih pacijenata,

who may be paralyzed or confused by their diagnosis.

koji mogu biti paralizovani ili zbunjeni svojom dijagnozom.

In those situations,

U takvim situacijama

carers are also advocates for the patient.

negovatelji su i advokati pacijenata.

Also of critical importance

Takođe, od presudne je važnosti

is the fact that carers also provide emotional support.

činjenica da negovatelji pružaju i emotivnu podršku.

They organize doctor's appointments,

Oni organizuju odlaske kod lekara,

they manage finances,

vode finansije,

and they also deal with daily household tasks.

a bave se i dnevnim kućnim poslovima.

These challenges are challenges that we can't ignore.

Ovi izazovi su izazovi koje ne možemo da ignorišemo.

There are currently more than 100 million carers

Trenutno ima više od 100 miliona negovatelja

providing 80 percent of care across Europe.

koji obezbeđuju 80 odsto nege širom Evrope.

And even if these numbers are impressive,

Iako su ove brojke impresivne,

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

oni su najverovatnije potcenjeni, shodno nepostojanju priznanja za negovatelje.

As we have just seen,

Kao što smo upravo videli,

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

mnogi od vas u ovoj prostoriji nisu bili sigurni da li ispunjavaju uslove

or considered to be a carer.

i da li se mogu smatrati negovateljima.

Many of you probably thought I was referring to a nurse

Mnogi od vas su verovatno pomislili da govorim o medicinskim sestrama

or some other healthcare professional.

ili nekom drugom zdravstvenom stručnjaku.

Also stunning

Takođe su iznenađujuće koristi

are the benefits that carers bring to our societies.

koje negovatelji daju našem društvu.

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

Želim da vam dam samo jedan primer iz Australije iz 2015. godine.

The annual value provided by informal carers

Godišnja vrednost nege koju su pružili neformalni negovatelji

to those suffering from mental illness

onima koji imaju mentalne bolesti

was evaluated at 13.2 billion Australian dollars.

procenjena je na 13,2 milijarde australijskih dolara.

This is nearly two times what the Australian government spends

Ovo je gotovo dva puta više od onoga što australijska vlada troši

on mental health services annually.

godišnje na službe za mentalno zdravlje.

These numbers, among others,

Između ostalog, ove brojke

demonstrate that if carers were to stop caring tomorrow,

pokazuju da, ako bi negovatelji sutra prestali da neguju,

our health and social systems would crumble.

naš zdravstveni i socijalni sistem bi propao.

And while the importance of these millions of silent carers

I dok se važnost ovih miliona tihih negovatelja

cannot be denied,

ne može poreći,

they've largely been unnoticed

njih u velikoj meri ne primećuju

by governments, healthcare systems

vlade, zdravstveni sistem

and private entities.

i privatna društva.

In addition, carers are facing enormous personal challenges.

Onda, negovatelji se suočavaju sa ogromnim ličnim izazovima.

Many carers face higher costs and can face financial difficulties,

Mnogi negovatelji imaju velike troškove

i mogu se suočavati sa finansijskim poteškoćama,

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

imajući u vidu činjenicu da možda ne mogu da rade puno radno vreme

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

ili ne mogu da sačuvaju posao.

Many studies have shown

Mnoge studije su pokazale

that often carers sacrifice their own health and well-being

da negovatelji često žrtvuju svoje zdravlje i dobrobit

in order to care for their loved ones.

kako bi vodili brigu o svojim najbližima.

Many carers spend so much time caring for their loved ones

Mnogi negovatelji provode toliko vremena brinući o svojim najbližima

that often their family and their relationships can suffer.

da to često ide na štetu porodice i odnosa sa drugim ljudima.

Many carers report that often,

Mnogi negovatelji često govore o tome

their employers don't have adequate policies in place

da njihovi poslodavci ne vode adekvatnu politiku

to support them.

koja bi ih u ovome podržala.

There has been improvement, though,

Ipak, došlo je do napretka

in the recognition of carers around the world.

u davanju priznanja negovateljima širom sveta.

Just a few years ago, an umbrella organization

Pre nekoliko godina osnovana je jedna krovna organizacija

called the International Alliance of Carer Organizations, or IACO,

pod nazivom Međunarodna alijansa organizacija negovatelja ili IACO,

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

kako bi ujedinila grupe negovatelja širom sveta,

to provide strategic direction,

kako bi napravila strategiju,

facilitate information sharing,

olakšala deljenje informacija

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

i aktivno zastupala negovatelje na međunarodnom nivou.

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

Privatna društva takođe počinju da odaju priznanje negovateljima.

I am proud that my personal engagement

Ponosan sam što je moj lični angažman

and enthusiasm towards this topic of carers

i entuzijazam prema ovoj temi o negovateljima

found an echo in my own workplace.

naišao na odobravanje na mom radnom mestu.

My company is committed to this cause

Moja kompanija je posvećena ovoj temi

and has developed an unprecedented framework

i kreirala je najnoviju politiku

for its employees and society as a whole.

za svoje zaposlene i društvo u celini.

The objective is to empower carers

Cilj je da se osnaže negovatelji

to improve their own health and well-being

kako bi poboljšali svoje zdravlje i dobrobit

and bring about a greater balance to their lives.

i došli do veće ravnoteže u svom životu.

Nevertheless, much more needs to be done

Ipak, mnogo više treba da se uradi

to complement these relatively isolated initiatives.

da bi se dopunile ove relativno izolovane inicijative.

Our societies are facing increased health pressures,

Naša društva se suočavaju sa sve većim zdravstvenim problemima,

including aging populations,

uključujući starenje populacije,

increased incidence of cancer and chronic conditions,

češću pojavu kancera i hronične bolesti,

widespread inequality,

rasprostranjenu nejednakost,

amongst many others.

između ostalog.

To confront these challenges,

Kako bi se izborili sa ovim izazovima,

policymakers must look beyond traditional healthcare pathways

kreatori politike moraju izaći iz okvira tradicionalnog zdravstva

and employment policies

i politike zapošljavanja

and recognize that informal care

i prepoznati da će nefomalna nega

will continue to form the bedrock of care.

nastaviti da formira srž nege.

Caring for someone should be a choice

Briga o nekome treba da bude stvar izbora

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

i treba da se vodi tako da čovekova dobrobit ostane uravnotežena.

But to really put the care back into health care,

Ali da bi se zdravstvena nega vratila zdravstvu,

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

ono što je potrebno je velika, društvena, strukturna promena.

And this can only happen through a change in mindset.

A ona se može desiti samo ako se promeni način razmišljanja.

And this can start today.

A to može početi danas.

Today, we can plant the seed for a change

Danas možemo da posadimo seme promene

for millions of carers around the world.

za milione negovatelja širom sveta.

Here's what I want to suggest:

Evo šta želim da predložim:

when you go home today

kada se danas vratite kući

or to the office tomorrow morning,

ili odete sutra ujutru u kancelariju,

embrace a carer.

zagrlite negovatelja.

Thank them,

Zahvalite im,

offer him or her a bit of help,

ponudite njemu ili njoj pomoć,

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

možda čak i sami volontirajte nekoliko sati nedeljno.

If carers around the world felt better recognized,

Ako bi negovatelji širom sveta osetili da se njihov rad više vrednuje,

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

to bi ne samo poboljšalo njihovo zdravlje i dobrobit

and sense of fulfillment,

i osećaj ispunjenosti,

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

nego bi takođe poboljšalo živote onih o kojima oni brinu.

Let's care more.

Hajde više da brinemo.

Thank you.

Hvala.

(Applause)

(Aplauz)