1 00:00:00,952 --> 00:00:04,103 Let's put the care back into health care. 2 00:00:04,690 --> 00:00:08,511 I've been working in the healthcare sector for the last 15 years, 3 00:00:08,535 --> 00:00:10,912 and one of the things that drew me to this sector 4 00:00:10,936 --> 00:00:15,154 was my interest in the care component of our healthcare systems, 5 00:00:15,178 --> 00:00:16,517 more specifically, 6 00:00:16,541 --> 00:00:19,154 to the invaluable role played by carers. 7 00:00:20,173 --> 00:00:23,838 Now, how many of you in this room consider yourself a carer? 8 00:00:26,473 --> 00:00:29,072 By this, I mean how many of you have cared for someone 9 00:00:29,096 --> 00:00:32,723 suffering from an illness, injury or disability? 10 00:00:32,747 --> 00:00:34,873 Can you raise your hand if this is the case? 11 00:00:37,119 --> 00:00:38,531 About half of the room. 12 00:00:39,316 --> 00:00:41,626 I want to thank all of you who raised your hands 13 00:00:41,650 --> 00:00:43,814 for the time that you've spent as a carer. 14 00:00:43,838 --> 00:00:46,480 What you do is extremely precious. 15 00:00:47,813 --> 00:00:50,204 I am a former cared-for patient myself. 16 00:00:50,868 --> 00:00:53,961 When I was a teenager, I suffered from Lyme disease 17 00:00:53,985 --> 00:00:57,066 and underwent 18 months of antibiotic treatment. 18 00:00:58,025 --> 00:01:00,048 I was repeatedly misdiagnosed: 19 00:01:00,521 --> 00:01:04,964 bacterial meningitis, fibromyalgia, you name it. 20 00:01:04,988 --> 00:01:06,554 They couldn't figure it out. 21 00:01:07,141 --> 00:01:10,606 And if I'm standing here in front of you today, 22 00:01:10,630 --> 00:01:12,259 it's because I owe my life 23 00:01:12,283 --> 00:01:15,200 to the stubbornness and commitment of one carer. 24 00:01:16,187 --> 00:01:18,155 He did everything he could for me -- 25 00:01:18,179 --> 00:01:21,651 driving long distances from one treatment center to another, 26 00:01:21,675 --> 00:01:23,549 searching for the best option, 27 00:01:24,276 --> 00:01:27,008 and above all, never giving up, 28 00:01:27,032 --> 00:01:29,016 despite the difficulties he encountered, 29 00:01:29,040 --> 00:01:32,208 including from a work and quality-of-life perspective. 30 00:01:32,867 --> 00:01:34,605 That was my father. 31 00:01:34,629 --> 00:01:38,798 I recovered, and this is largely thanks to his dedication. 32 00:01:39,631 --> 00:01:42,811 This experience turned me into a patient advocate. 33 00:01:43,478 --> 00:01:48,260 The closer I looked, the more I saw carers providing the same kind of support 34 00:01:48,284 --> 00:01:50,594 that my father provided to me, 35 00:01:50,618 --> 00:01:53,993 and playing a crucial role in the healthcare system. 36 00:01:54,686 --> 00:01:57,307 I don't think it's an exaggeration to say 37 00:01:57,331 --> 00:01:59,811 that without informal carers like him, 38 00:01:59,835 --> 00:02:02,027 our health and social systems 39 00:02:02,051 --> 00:02:03,373 would crumble. 40 00:02:04,148 --> 00:02:07,514 And yet, they're largely going unrecognized. 41 00:02:08,828 --> 00:02:11,926 I am now a long-distance carer for my mother, 42 00:02:12,687 --> 00:02:14,972 who suffers from multiple chronic conditions. 43 00:02:16,004 --> 00:02:19,787 I understand, now more than ever, 44 00:02:19,811 --> 00:02:21,886 the demands that caregivers face. 45 00:02:22,942 --> 00:02:25,126 With aging populations, 46 00:02:25,150 --> 00:02:26,975 economic instability, 47 00:02:26,999 --> 00:02:28,971 healthcare system stress 48 00:02:28,995 --> 00:02:31,932 and increased incidents of long-term chronic care needs, 49 00:02:32,690 --> 00:02:35,408 the importance and demands on family caregivers 50 00:02:35,432 --> 00:02:36,764 are greater than ever. 51 00:02:37,886 --> 00:02:41,777 Carers all over the world are sacrificing their own physical, 52 00:02:41,801 --> 00:02:44,587 financial and psychosocial well-being 53 00:02:44,611 --> 00:02:46,443 to provide care for their loved ones. 54 00:02:47,556 --> 00:02:49,956 Carers have their own limits and needs, 55 00:02:49,980 --> 00:02:52,374 and in absence of adequate support, 56 00:02:52,398 --> 00:02:54,752 many could be stretched to the breaking point. 57 00:02:55,858 --> 00:02:59,451 Once seen as a personal and private matter in family life, 58 00:03:00,132 --> 00:03:03,643 unpaid caregiving has formed the invisible backbone 59 00:03:03,667 --> 00:03:06,988 of our health and social systems all over the world. 60 00:03:08,469 --> 00:03:10,863 Many of these carers are even in this room, 61 00:03:10,887 --> 00:03:12,203 as we have just seen. 62 00:03:13,031 --> 00:03:15,639 Who are they, and how many are they? 63 00:03:16,217 --> 00:03:18,583 What are the challenges that they are facing? 64 00:03:18,607 --> 00:03:22,406 And, above all, how can we make sure that their value to patients, 65 00:03:22,430 --> 00:03:24,748 our healthcare system and society 66 00:03:24,772 --> 00:03:25,930 is recognized? 67 00:03:27,067 --> 00:03:29,648 Anyone can be a carer, really: 68 00:03:30,357 --> 00:03:34,233 a 15-year-old girl caring for a parent with multiple sclerosis; 69 00:03:35,074 --> 00:03:37,978 a 40-year-old man juggling full-time work 70 00:03:38,002 --> 00:03:40,945 while caring for his family who lives far away; 71 00:03:41,623 --> 00:03:45,310 a 60-year-old man caring for his wife who has terminal cancer; 72 00:03:46,279 --> 00:03:49,414 or an 80-year-old woman caring for her husband 73 00:03:49,438 --> 00:03:51,074 who has Alzheimer's disease. 74 00:03:51,997 --> 00:03:55,889 The things carers do for their patients are varied. 75 00:03:55,913 --> 00:03:57,609 They provide personal care, 76 00:03:57,633 --> 00:03:59,641 like getting someone dressed, 77 00:03:59,665 --> 00:04:01,210 feeding them, 78 00:04:01,234 --> 00:04:02,661 helping them to the bathroom, 79 00:04:03,260 --> 00:04:04,679 helping them move about. 80 00:04:05,356 --> 00:04:08,967 They also provide a significant level of medical care, 81 00:04:08,991 --> 00:04:13,938 because they often know a lot about their loved one's condition and needs, 82 00:04:13,962 --> 00:04:16,851 sometimes better than the patients themselves, 83 00:04:16,875 --> 00:04:20,453 who may be paralyzed or confused by their diagnosis. 84 00:04:21,284 --> 00:04:22,834 In those situations, 85 00:04:23,350 --> 00:04:27,031 carers are also advocates for the patient. 86 00:04:28,769 --> 00:04:30,966 Also of critical importance 87 00:04:31,631 --> 00:04:35,734 is the fact that carers also provide emotional support. 88 00:04:36,338 --> 00:04:38,313 They organize doctor's appointments, 89 00:04:39,107 --> 00:04:40,831 they manage finances, 90 00:04:40,855 --> 00:04:44,108 and they also deal with daily household tasks. 91 00:04:45,018 --> 00:04:47,834 These challenges are challenges that we can't ignore. 92 00:04:48,633 --> 00:04:52,079 There are currently more than 100 million carers 93 00:04:52,103 --> 00:04:55,866 providing 80 percent of care across Europe. 94 00:04:56,617 --> 00:04:58,930 And even if these numbers are impressive, 95 00:04:58,954 --> 00:05:03,388 they're most likely underestimated, given the lack of recognition of carers. 96 00:05:03,412 --> 00:05:04,706 As we have just seen, 97 00:05:04,730 --> 00:05:08,119 many of you in this room weren't sure if you could be qualified 98 00:05:08,143 --> 00:05:10,222 or considered to be a carer. 99 00:05:10,246 --> 00:05:12,858 Many of you probably thought I was referring to a nurse 100 00:05:12,882 --> 00:05:14,803 or some other healthcare professional. 101 00:05:15,602 --> 00:05:17,096 Also stunning 102 00:05:17,120 --> 00:05:20,838 are the benefits that carers bring to our societies. 103 00:05:20,862 --> 00:05:24,774 I want to give you just one example from Australia in 2015. 104 00:05:25,607 --> 00:05:28,960 The annual value provided by informal carers 105 00:05:28,984 --> 00:05:31,012 to those suffering from mental illness 106 00:05:31,036 --> 00:05:35,953 was evaluated at 13.2 billion Australian dollars. 107 00:05:36,431 --> 00:05:39,974 This is nearly two times what the Australian government spends 108 00:05:39,998 --> 00:05:41,958 on mental health services annually. 109 00:05:41,982 --> 00:05:44,210 These numbers, among others, 110 00:05:44,234 --> 00:05:47,393 demonstrate that if carers were to stop caring tomorrow, 111 00:05:47,417 --> 00:05:50,714 our health and social systems would crumble. 112 00:05:52,168 --> 00:05:54,931 And while the importance of these millions of silent carers 113 00:05:54,955 --> 00:05:56,300 cannot be denied, 114 00:05:56,890 --> 00:05:58,938 they've largely been unnoticed 115 00:05:58,962 --> 00:06:01,918 by governments, healthcare systems 116 00:06:01,942 --> 00:06:03,381 and private entities. 117 00:06:05,042 --> 00:06:09,277 In addition, carers are facing enormous personal challenges. 118 00:06:09,792 --> 00:06:13,791 Many carers face higher costs and can face financial difficulties, 119 00:06:13,815 --> 00:06:16,901 given the fact that they may not be able to work full time 120 00:06:16,925 --> 00:06:19,617 or they may not be able to hold down a job altogether. 121 00:06:20,330 --> 00:06:21,530 Many studies have shown 122 00:06:21,554 --> 00:06:24,553 that often carers sacrifice their own health and well-being 123 00:06:24,577 --> 00:06:26,580 in order to care for their loved ones. 124 00:06:27,395 --> 00:06:31,050 Many carers spend so much time caring for their loved ones 125 00:06:31,074 --> 00:06:34,124 that often their family and their relationships can suffer. 126 00:06:34,941 --> 00:06:36,629 Many carers report that often, 127 00:06:36,653 --> 00:06:39,355 their employers don't have adequate policies in place 128 00:06:39,379 --> 00:06:40,659 to support them. 129 00:06:41,157 --> 00:06:42,850 There has been improvement, though, 130 00:06:42,874 --> 00:06:45,180 in the recognition of carers around the world. 131 00:06:45,718 --> 00:06:48,262 Just a few years ago, an umbrella organization 132 00:06:48,286 --> 00:06:52,608 called the International Alliance of Carer Organizations, or IACO, 133 00:06:52,632 --> 00:06:56,498 was formed to bring together carer groups from all over the world, 134 00:06:56,522 --> 00:06:58,631 to provide strategic direction, 135 00:06:58,655 --> 00:07:00,677 facilitate information sharing, 136 00:07:00,701 --> 00:07:04,271 as well as actively advocate for carers on an international level. 137 00:07:05,036 --> 00:07:09,350 Private entities are also starting to recognize the situation of carers. 138 00:07:09,836 --> 00:07:12,101 I am proud that my personal engagement 139 00:07:12,125 --> 00:07:14,754 and enthusiasm towards this topic of carers 140 00:07:14,778 --> 00:07:16,866 found an echo in my own workplace. 141 00:07:17,612 --> 00:07:20,106 My company is committed to this cause 142 00:07:20,130 --> 00:07:22,884 and has developed an unprecedented framework 143 00:07:22,908 --> 00:07:25,787 for its employees and society as a whole. 144 00:07:26,471 --> 00:07:28,900 The objective is to empower carers 145 00:07:28,924 --> 00:07:31,089 to improve their own health and well-being 146 00:07:31,113 --> 00:07:33,699 and bring about a greater balance to their lives. 147 00:07:34,875 --> 00:07:38,180 Nevertheless, much more needs to be done 148 00:07:38,204 --> 00:07:41,098 to complement these relatively isolated initiatives. 149 00:07:42,005 --> 00:07:44,914 Our societies are facing increased health pressures, 150 00:07:44,938 --> 00:07:47,223 including aging populations, 151 00:07:47,247 --> 00:07:50,654 increased incidence of cancer and chronic conditions, 152 00:07:50,678 --> 00:07:52,713 widespread inequality, 153 00:07:52,737 --> 00:07:54,201 amongst many others. 154 00:07:54,862 --> 00:07:56,726 To confront these challenges, 155 00:07:56,750 --> 00:08:00,409 policymakers must look beyond traditional healthcare pathways 156 00:08:00,433 --> 00:08:01,781 and employment policies 157 00:08:02,418 --> 00:08:04,771 and recognize that informal care 158 00:08:04,795 --> 00:08:07,861 will continue to form the bedrock of care. 159 00:08:09,456 --> 00:08:11,763 Caring for someone should be a choice 160 00:08:12,644 --> 00:08:16,757 and should be done without putting one's own well-being in the balance. 161 00:08:19,129 --> 00:08:22,962 But to really put the care back into health care, 162 00:08:23,671 --> 00:08:29,115 what's needed is a deep, societal, structural change. 163 00:08:30,013 --> 00:08:32,675 And this can only happen through a change in mindset. 164 00:08:33,371 --> 00:08:35,194 And this can start today. 165 00:08:36,182 --> 00:08:39,066 Today, we can plant the seed for a change 166 00:08:39,090 --> 00:08:41,210 for millions of carers around the world. 167 00:08:41,927 --> 00:08:43,500 Here's what I want to suggest: 168 00:08:44,216 --> 00:08:45,616 when you go home today 169 00:08:46,318 --> 00:08:48,642 or to the office tomorrow morning, 170 00:08:48,666 --> 00:08:49,959 embrace a carer. 171 00:08:51,012 --> 00:08:52,216 Thank them, 172 00:08:52,756 --> 00:08:54,588 offer him or her a bit of help, 173 00:08:55,284 --> 00:08:59,243 maybe even volunteer as a carer yourself for a couple hours a week. 174 00:09:00,260 --> 00:09:02,911 If carers around the world felt better recognized, 175 00:09:02,935 --> 00:09:05,744 it would not only improve their own health and well-being 176 00:09:05,768 --> 00:09:07,476 and sense of fulfillment, 177 00:09:07,500 --> 00:09:10,890 but it would also improve the lives of those that they're caring for. 178 00:09:11,531 --> 00:09:13,000 Let's care more. 179 00:09:13,484 --> 00:09:14,635 Thank you. 180 00:09:14,659 --> 00:09:17,682 (Applause)