WEBVTT 00:00:00.952 --> 00:00:04.103 Let's put the care back into health care. 00:00:04.690 --> 00:00:08.511 I've been working in the healthcare sector for the last 15 years, 00:00:08.535 --> 00:00:10.912 and one of the things that drew me to this sector 00:00:10.936 --> 00:00:15.154 was my interest in the care component of our healthcare systems, 00:00:15.178 --> 00:00:16.517 more specifically, 00:00:16.541 --> 00:00:19.154 to the invaluable role played by carers. 00:00:20.173 --> 00:00:23.838 Now, how many of you in this room consider yourself a carer? 00:00:26.473 --> 00:00:29.072 By this, I mean how many of you have cared for someone 00:00:29.096 --> 00:00:32.723 suffering from an illness, injury or disability? 00:00:32.747 --> 00:00:34.873 Can you raise your hand if this is the case? 00:00:37.119 --> 00:00:38.531 About half of the room. 00:00:39.316 --> 00:00:41.626 I want to thank all of you who raised your hands 00:00:41.650 --> 00:00:43.814 for the time that you've spent as a carer. 00:00:43.838 --> 00:00:46.480 What you do is extremely precious. 00:00:47.813 --> 00:00:50.204 I am a former cared-for patient myself. 00:00:50.868 --> 00:00:53.961 When I was a teenager, I suffered from Lyme disease 00:00:53.985 --> 00:00:57.066 and underwent 18 months of antibiotic treatment. 00:00:58.025 --> 00:01:00.048 I was repeatedly misdiagnosed: 00:01:00.521 --> 00:01:04.964 bacterial meningitis, fibromyalgia, you name it. 00:01:04.988 --> 00:01:06.554 They couldn't figure it out. 00:01:07.141 --> 00:01:10.606 And if I'm standing here in front of you today, 00:01:10.630 --> 00:01:12.259 it's because I owe my life 00:01:12.283 --> 00:01:15.200 to the stubbornness and commitment of one carer. 00:01:16.187 --> 00:01:18.155 He did everything he could for me -- 00:01:18.179 --> 00:01:21.651 driving long distances from one treatment center to another, 00:01:21.675 --> 00:01:23.549 searching for the best option, 00:01:24.276 --> 00:01:27.008 and above all, never giving up, 00:01:27.032 --> 00:01:29.016 despite the difficulties he encountered, 00:01:29.040 --> 00:01:32.208 including from a work and quality-of-life perspective. 00:01:32.867 --> 00:01:34.605 That was my father. 00:01:34.629 --> 00:01:38.798 I recovered, and this is largely thanks to his dedication. 00:01:39.631 --> 00:01:42.811 This experience turned me into a patient advocate. 00:01:43.478 --> 00:01:48.260 The closer I looked, the more I saw carers providing the same kind of support 00:01:48.284 --> 00:01:50.594 that my father provided to me, 00:01:50.618 --> 00:01:53.993 and playing a crucial role in the healthcare system. 00:01:54.686 --> 00:01:57.307 I don't think it's an exaggeration to say 00:01:57.331 --> 00:01:59.811 that without informal carers like him, 00:01:59.835 --> 00:02:02.027 our health and social systems 00:02:02.051 --> 00:02:03.373 would crumble. 00:02:04.148 --> 00:02:07.514 And yet, they're largely going unrecognized. 00:02:08.828 --> 00:02:11.926 I am now a long-distance carer for my mother, 00:02:12.687 --> 00:02:14.972 who suffers from multiple chronic conditions. 00:02:16.004 --> 00:02:19.787 I understand, now more than ever, 00:02:19.811 --> 00:02:21.886 the demands that caregivers face. 00:02:22.942 --> 00:02:25.126 With aging populations, 00:02:25.150 --> 00:02:26.975 economic instability, 00:02:26.999 --> 00:02:28.971 healthcare system stress 00:02:28.995 --> 00:02:31.932 and increased incidents of long-term chronic care needs, 00:02:32.690 --> 00:02:35.408 the importance and demands on family caregivers 00:02:35.432 --> 00:02:36.764 are greater than ever. 00:02:37.886 --> 00:02:41.777 Carers all over the world are sacrificing their own physical, 00:02:41.801 --> 00:02:44.587 financial and psychosocial well-being 00:02:44.611 --> 00:02:46.443 to provide care for their loved ones. 00:02:47.556 --> 00:02:49.956 Carers have their own limits and needs, 00:02:49.980 --> 00:02:52.374 and in absence of adequate support, 00:02:52.398 --> 00:02:54.752 many could be stretched to the breaking point. 00:02:55.858 --> 00:02:59.451 Once seen as a personal and private matter in family life, 00:03:00.132 --> 00:03:03.643 unpaid caregiving has formed the invisible backbone 00:03:03.667 --> 00:03:06.988 of our health and social systems all over the world. 00:03:08.469 --> 00:03:10.863 Many of these carers are even in this room, 00:03:10.887 --> 00:03:12.203 as we have just seen. 00:03:13.031 --> 00:03:15.639 Who are they, and how many are they? 00:03:16.217 --> 00:03:18.583 What are the challenges that they are facing? 00:03:18.607 --> 00:03:22.406 And, above all, how can we make sure that their value to patients, 00:03:22.430 --> 00:03:24.748 our healthcare system and society 00:03:24.772 --> 00:03:25.930 is recognized? 00:03:27.067 --> 00:03:29.648 Anyone can be a carer, really: 00:03:30.357 --> 00:03:34.233 a 15-year-old girl caring for a parent with multiple sclerosis; 00:03:35.074 --> 00:03:37.978 a 40-year-old man juggling full-time work 00:03:38.002 --> 00:03:40.945 while caring for his family who lives far away; 00:03:41.623 --> 00:03:45.310 a 60-year-old man caring for his wife who has terminal cancer; 00:03:46.279 --> 00:03:49.414 or an 80-year-old woman caring for her husband 00:03:49.438 --> 00:03:51.074 who has Alzheimer's disease. 00:03:51.997 --> 00:03:55.889 The things carers do for their patients are varied. 00:03:55.913 --> 00:03:57.609 They provide personal care, 00:03:57.633 --> 00:03:59.641 like getting someone dressed, 00:03:59.665 --> 00:04:01.210 feeding them, 00:04:01.234 --> 00:04:02.661 helping them to the bathroom, 00:04:03.260 --> 00:04:04.679 helping them move about. 00:04:05.356 --> 00:04:08.967 They also provide a significant level of medical care, 00:04:08.991 --> 00:04:13.938 because they often know a lot about their loved one's condition and needs, 00:04:13.962 --> 00:04:16.851 sometimes better than the patients themselves, 00:04:16.875 --> 00:04:20.453 who may be paralyzed or confused by their diagnosis. 00:04:21.284 --> 00:04:22.834 In those situations, 00:04:23.350 --> 00:04:27.031 carers are also advocates for the patient. 00:04:28.769 --> 00:04:30.966 Also of critical importance 00:04:31.631 --> 00:04:35.734 is the fact that carers also provide emotional support. 00:04:36.338 --> 00:04:38.313 They organize doctor's appointments, 00:04:39.107 --> 00:04:40.831 they manage finances, 00:04:40.855 --> 00:04:44.108 and they also deal with daily household tasks. 00:04:45.018 --> 00:04:47.834 These challenges are challenges that we can't ignore. 00:04:48.633 --> 00:04:52.079 There are currently more than 100 million carers 00:04:52.103 --> 00:04:55.866 providing 80 percent of care across Europe. 00:04:56.617 --> 00:04:58.930 And even if these numbers are impressive, 00:04:58.954 --> 00:05:03.388 they're most likely underestimated, given the lack of recognition of carers. 00:05:03.412 --> 00:05:04.706 As we have just seen, 00:05:04.730 --> 00:05:08.119 many of you in this room weren't sure if you could be qualified 00:05:08.143 --> 00:05:10.222 or considered to be a carer. 00:05:10.246 --> 00:05:12.858 Many of you probably thought I was referring to a nurse 00:05:12.882 --> 00:05:14.803 or some other healthcare professional. 00:05:15.602 --> 00:05:17.096 Also stunning 00:05:17.120 --> 00:05:20.838 are the benefits that carers bring to our societies. 00:05:20.862 --> 00:05:24.774 I want to give you just one example from Australia in 2015. 00:05:25.607 --> 00:05:28.960 The annual value provided by informal carers 00:05:28.984 --> 00:05:31.012 to those suffering from mental illness 00:05:31.036 --> 00:05:35.953 was evaluated at 13.2 billion Australian dollars. 00:05:36.431 --> 00:05:39.974 This is nearly two times what the Australian government spends 00:05:39.998 --> 00:05:41.958 on mental health services annually. 00:05:41.982 --> 00:05:44.210 These numbers, among others, 00:05:44.234 --> 00:05:47.393 demonstrate that if carers were to stop caring tomorrow, 00:05:47.417 --> 00:05:50.714 our health and social systems would crumble. 00:05:52.168 --> 00:05:54.931 And while the importance of these millions of silent carers 00:05:54.955 --> 00:05:56.300 cannot be denied, 00:05:56.890 --> 00:05:58.938 they've largely been unnoticed 00:05:58.962 --> 00:06:01.918 by governments, healthcare systems 00:06:01.942 --> 00:06:03.381 and private entities. 00:06:05.042 --> 00:06:09.277 In addition, carers are facing enormous personal challenges. 00:06:09.792 --> 00:06:13.791 Many carers face higher costs and can face financial difficulties, 00:06:13.815 --> 00:06:16.901 given the fact that they may not be able to work full time 00:06:16.925 --> 00:06:19.617 or they may not be able to hold down a job altogether. 00:06:20.330 --> 00:06:21.530 Many studies have shown 00:06:21.554 --> 00:06:24.553 that often carers sacrifice their own health and well-being 00:06:24.577 --> 00:06:26.580 in order to care for their loved ones. 00:06:27.395 --> 00:06:31.050 Many carers spend so much time caring for their loved ones 00:06:31.074 --> 00:06:34.124 that often their family and their relationships can suffer. 00:06:34.941 --> 00:06:36.629 Many carers report that often, 00:06:36.653 --> 00:06:39.355 their employers don't have adequate policies in place 00:06:39.379 --> 00:06:40.659 to support them. 00:06:41.157 --> 00:06:42.850 There has been improvement, though, 00:06:42.874 --> 00:06:45.180 in the recognition of carers around the world. 00:06:45.718 --> 00:06:48.262 Just a few years ago, an umbrella organization 00:06:48.286 --> 00:06:52.608 called the International Alliance of Carer Organizations, or IACO, 00:06:52.632 --> 00:06:56.498 was formed to bring together carer groups from all over the world, 00:06:56.522 --> 00:06:58.631 to provide strategic direction, 00:06:58.655 --> 00:07:00.677 facilitate information sharing, 00:07:00.701 --> 00:07:04.271 as well as actively advocate for carers on an international level. 00:07:05.036 --> 00:07:09.350 Private entities are also starting to recognize the situation of carers. 00:07:09.836 --> 00:07:12.101 I am proud that my personal engagement 00:07:12.125 --> 00:07:14.754 and enthusiasm towards this topic of carers 00:07:14.778 --> 00:07:16.866 found an echo in my own workplace. 00:07:17.612 --> 00:07:20.106 My company is committed to this cause 00:07:20.130 --> 00:07:22.884 and has developed an unprecedented framework 00:07:22.908 --> 00:07:25.787 for its employees and society as a whole. 00:07:26.471 --> 00:07:28.900 The objective is to empower carers 00:07:28.924 --> 00:07:31.089 to improve their own health and well-being 00:07:31.113 --> 00:07:33.699 and bring about a greater balance to their lives. 00:07:34.875 --> 00:07:38.180 Nevertheless, much more needs to be done 00:07:38.204 --> 00:07:41.098 to complement these relatively isolated initiatives. 00:07:42.005 --> 00:07:44.914 Our societies are facing increased health pressures, 00:07:44.938 --> 00:07:47.223 including aging populations, 00:07:47.247 --> 00:07:50.654 increased incidence of cancer and chronic conditions, 00:07:50.678 --> 00:07:52.713 widespread inequality, 00:07:52.737 --> 00:07:54.201 amongst many others. 00:07:54.862 --> 00:07:56.726 To confront these challenges, 00:07:56.750 --> 00:08:00.409 policymakers must look beyond traditional healthcare pathways 00:08:00.433 --> 00:08:01.781 and employment policies 00:08:02.418 --> 00:08:04.771 and recognize that informal care 00:08:04.795 --> 00:08:07.861 will continue to form the bedrock of care. 00:08:09.456 --> 00:08:11.763 Caring for someone should be a choice 00:08:12.644 --> 00:08:16.757 and should be done without putting one's own well-being in the balance. 00:08:19.129 --> 00:08:22.962 But to really put the care back into health care, 00:08:23.671 --> 00:08:29.115 what's needed is a deep, societal, structural change. 00:08:30.013 --> 00:08:32.675 And this can only happen through a change in mindset. 00:08:33.371 --> 00:08:35.194 And this can start today. 00:08:36.182 --> 00:08:39.066 Today, we can plant the seed for a change 00:08:39.090 --> 00:08:41.210 for millions of carers around the world. 00:08:41.927 --> 00:08:43.500 Here's what I want to suggest: 00:08:44.216 --> 00:08:45.616 when you go home today 00:08:46.318 --> 00:08:48.642 or to the office tomorrow morning, 00:08:48.666 --> 00:08:49.959 embrace a carer. 00:08:51.012 --> 00:08:52.216 Thank them, 00:08:52.756 --> 00:08:54.588 offer him or her a bit of help, 00:08:55.284 --> 00:08:59.243 maybe even volunteer as a carer yourself for a couple hours a week. 00:09:00.260 --> 00:09:02.911 If carers around the world felt better recognized, 00:09:02.935 --> 00:09:05.744 it would not only improve their own health and well-being 00:09:05.768 --> 00:09:07.476 and sense of fulfillment, 00:09:07.500 --> 00:09:10.890 but it would also improve the lives of those that they're caring for. 00:09:11.531 --> 00:09:13.000 Let's care more. 00:09:13.484 --> 00:09:14.635 Thank you. 00:09:14.659 --> 00:09:17.682 (Applause)