WEBVTT 00:00:00.784 --> 00:00:04.890 Let's put the care back into healthcare. 00:00:04.890 --> 00:00:08.708 I've been working in the healthcare sector for the last 15 years, 00:00:08.708 --> 00:00:11.036 and one of the things that drew me to this sector 00:00:11.036 --> 00:00:15.277 was my interest in the care component of our healthcare systems, 00:00:15.277 --> 00:00:18.186 more specifically to the invaluable role 00:00:18.186 --> 00:00:20.173 played by carers. 00:00:20.173 --> 00:00:22.634 Now, how many of you in this room consider yourself a carer? NOTE Paragraph 00:00:22.634 --> 00:00:29.213 By this I mean, how many of you have cared for someone 00:00:29.213 --> 00:00:33.079 suffering from an illness, injury or disability? 00:00:33.079 --> 00:00:35.205 Can you raise your hand if this is the case? 00:00:37.342 --> 00:00:39.539 About half of the room. NOTE Paragraph 00:00:39.539 --> 00:00:41.872 I want to thank all of you who raised your hands 00:00:41.872 --> 00:00:44.059 for the time that you've spent as a carer. 00:00:44.059 --> 00:00:46.861 What you do is extremely precious. NOTE Paragraph 00:00:46.861 --> 00:00:50.204 I am a former cared for patient myself. 00:00:51.099 --> 00:00:54.102 When I was a teenager, I suffered from Lyme disease 00:00:54.102 --> 00:00:58.065 and underwent 18 months of antibiotic treatment. 00:00:58.065 --> 00:01:00.553 I was repeatedly misdiagnosed: 00:01:00.553 --> 00:01:05.152 bacterial meningitis, fibromyalgia, you name it. 00:01:05.152 --> 00:01:07.268 They couldn't figure it out, 00:01:07.268 --> 00:01:10.864 and if I'm standing here in front of you today, 00:01:10.864 --> 00:01:12.283 it's because I owe my life 00:01:12.283 --> 00:01:16.346 to the stubbornness and commitment of one carer. 00:01:16.346 --> 00:01:18.337 He did everything he could for me, 00:01:18.337 --> 00:01:21.832 driving long distances from one treatment center to another, 00:01:21.832 --> 00:01:24.515 searching for the best option, 00:01:24.515 --> 00:01:27.270 and above all never giving up, 00:01:27.270 --> 00:01:29.472 despite the difficulties he encountered, 00:01:29.472 --> 00:01:33.081 including from a work and quality-of-life perspective. 00:01:33.081 --> 00:01:34.801 That was my father. 00:01:34.801 --> 00:01:39.759 I recovered, and this is largely thanks to his dedication. NOTE Paragraph 00:01:39.759 --> 00:01:43.645 This experience turned me into a patient advocate. 00:01:43.645 --> 00:01:48.398 The closer I looked, the more I saw carers providing the same kind of support 00:01:48.398 --> 00:01:50.731 that my father provided to me, 00:01:50.731 --> 00:01:54.556 and playing a crucial role in the healthcare system. 00:01:54.556 --> 00:01:57.331 I don't think it's an exaggeration to say 00:01:57.331 --> 00:01:59.596 that without informal carers like him, 00:01:59.596 --> 00:02:02.200 our health and social systems 00:02:02.200 --> 00:02:04.323 would crumble. 00:02:04.323 --> 00:02:08.995 And yet, they're largely going unrecognized. NOTE Paragraph 00:02:08.995 --> 00:02:12.687 I am now a long-distance carer for my mother, 00:02:12.687 --> 00:02:16.148 who suffers from multiple chronic conditions. 00:02:16.148 --> 00:02:19.954 I understand, now more than ever, 00:02:19.954 --> 00:02:23.181 the demands that caregivers face. 00:02:23.181 --> 00:02:25.333 With aging populations, 00:02:25.333 --> 00:02:27.229 economic instability, 00:02:27.229 --> 00:02:29.320 healthcare system stress, 00:02:29.320 --> 00:02:32.873 and increased incidents of long-term chronic care needs, 00:02:32.873 --> 00:02:35.614 the importance and demands on family caregivers 00:02:35.614 --> 00:02:38.244 are greater than ever. 00:02:38.244 --> 00:02:41.659 Carers all over the world are sacrificing their own physical, 00:02:41.659 --> 00:02:45.494 financial, and psycho-social wellbeing 00:02:45.494 --> 00:02:47.723 to provide care for their loved ones. 00:02:47.723 --> 00:02:50.146 Carers have their own limits and needs, 00:02:50.146 --> 00:02:52.563 and in absence of adequate support, 00:02:52.563 --> 00:02:56.311 many could be stretched to the breaking point. 00:02:56.311 --> 00:03:00.426 Once seen as a personal and private matter in family life, 00:03:00.426 --> 00:03:03.960 unpaid caregiving has formed the invisible backbone 00:03:03.960 --> 00:03:08.850 of our health and social systems all over the world. NOTE Paragraph 00:03:08.850 --> 00:03:11.213 Many of these carers are even in this room, 00:03:11.213 --> 00:03:13.159 as we have just seen. 00:03:13.159 --> 00:03:16.757 Who are they, and how many are they? 00:03:16.757 --> 00:03:18.813 What are the challenges that they are facing? 00:03:18.813 --> 00:03:22.822 And, above all, how can we make sure that their value to patients, 00:03:22.822 --> 00:03:27.322 our healthcare system, and society is recognized? 00:03:27.322 --> 00:03:30.532 Anyone can be a carer really: 00:03:30.532 --> 00:03:32.014 a 15-year old girl caring for a parent with multiple sclerosis; 00:03:32.014 --> 00:03:38.139 a 40-year old man juggling full-time work 00:03:38.139 --> 00:03:42.099 while caring for his family who lives far away; 00:03:42.099 --> 00:03:46.398 a 60-year old man caring for his wife who has terminal cancer; 00:03:46.398 --> 00:03:49.621 or an 80-year old woman caring for her husband 00:03:49.621 --> 00:03:52.276 who has Alzheimer's disease. 00:03:52.276 --> 00:03:56.191 The things carers do for their patients are varied. NOTE Paragraph 00:03:56.191 --> 00:03:57.910 They provide personal care, 00:03:57.910 --> 00:03:59.785 like getting someone dressed, 00:03:59.785 --> 00:04:01.657 feeding them, 00:04:01.657 --> 00:04:03.332 helping them to the bathroom, 00:04:03.332 --> 00:04:06.039 helping them move about. 00:04:06.039 --> 00:04:09.333 They also provide a significant level of medical care, 00:04:09.333 --> 00:04:12.973 because they often know a lot about their loved one's condition and needs, 00:04:12.973 --> 00:04:17.067 sometimes better than the patients themselves, 00:04:17.067 --> 00:04:21.514 who may be paralyzed or confused by their diagnosis. 00:04:21.514 --> 00:04:24.202 In those situations, 00:04:24.202 --> 00:04:28.271 carers are also advocates for the patient. NOTE Paragraph 00:04:28.271 --> 00:04:31.980 Also of critical importance 00:04:31.980 --> 00:04:36.847 is the fact that carers also provide emotional support. 00:04:36.847 --> 00:04:39.274 They organize doctor's appointments, 00:04:39.274 --> 00:04:41.223 they manage finances, 00:04:41.223 --> 00:04:45.305 and they also deal with daily household tasks. 00:04:45.305 --> 00:04:48.935 These challenges are challenges that we can't ignore. 00:04:48.935 --> 00:04:52.270 There are currently more than 100 million carers 00:04:52.270 --> 00:04:56.776 providing 80 percent of care across Europe, 00:04:56.776 --> 00:04:58.832 and even if these numbers are impressive, 00:04:58.832 --> 00:05:03.560 they're most likely underestimated given the lack of recognition of carers. 00:05:03.560 --> 00:05:05.260 As we have just seen, 00:05:05.260 --> 00:05:08.247 many of you in this room weren't sure if you could be qualified 00:05:08.247 --> 00:05:10.429 or considered to be a carer. 00:05:10.429 --> 00:05:12.529 Many of you probably thought I was referring to a nurse 00:05:12.529 --> 00:05:15.642 or some other healthcare professional. NOTE Paragraph 00:05:15.642 --> 00:05:17.212 Also stunnning 00:05:17.212 --> 00:05:21.027 are the benefits that carers bring to our societies, 00:05:21.027 --> 00:05:25.333 and I want to give you just one example from Australia in 2015. 00:05:25.333 --> 00:05:28.984 The annual value provided by informal carers 00:05:28.984 --> 00:05:31.036 to those suffering from mental illness 00:05:31.036 --> 00:05:36.662 was evaluated at 13.2 billion Australian dollars. 00:05:36.662 --> 00:05:42.314 This is nearly two times what the Australian government spends 00:05:42.314 --> 00:05:42.728 on mental health services annually. 00:05:42.728 --> 00:05:44.052 These numbers, among others, 00:05:44.052 --> 00:05:47.513 demonstrate that if carers were to stop caring tomorrow, 00:05:47.513 --> 00:05:49.864 our health and social systems 00:05:49.864 --> 00:05:52.303 would crumble. 00:05:52.303 --> 00:05:55.079 And while the importance of these millions of silent carers 00:05:55.079 --> 00:05:57.208 cannot be denied, 00:05:57.208 --> 00:05:59.117 they've largely been unnoticed 00:05:59.117 --> 00:06:02.706 by governments, healthcare systems, 00:06:02.706 --> 00:06:05.337 and private entities. NOTE Paragraph 00:06:05.337 --> 00:06:09.999 In addition, carers are facing enormous personal challenges. 00:06:09.999 --> 00:06:12.623 Many carers face higher costs and can face financial difficulties, 00:06:12.623 --> 00:06:17.135 given the fact that they may not be able to work full-time 00:06:17.135 --> 00:06:20.632 or they may not be able to hold down a job altogether. 00:06:20.632 --> 00:06:22.710 Many studies have shown that often carers sacrifice 00:06:22.710 --> 00:06:24.948 their own health and well-being 00:06:24.948 --> 00:06:27.729 in order to care for their loved ones. 00:06:27.729 --> 00:06:29.991 Many carers spend so much time caring for their loved ones 00:06:29.991 --> 00:06:35.124 that often their family and their relationships can suffer. 00:06:35.124 --> 00:06:36.776 Many carers report that often 00:06:36.776 --> 00:06:41.380 their employers don't have adequate policies in place to support them. NOTE Paragraph 00:06:41.380 --> 00:06:42.853 There has been improvement though 00:06:42.853 --> 00:06:45.973 in the recognition of carers around the world. 00:06:45.973 --> 00:06:48.374 Just a few years ago, an umbrella organization 00:06:48.374 --> 00:06:52.871 called the International Alliance of Carer Organizations, or IACO, 00:06:52.871 --> 00:06:56.522 was formed to bring together carer groups from all over the world, 00:06:56.522 --> 00:06:58.655 to provide strategic direction, 00:06:58.655 --> 00:07:00.701 facilitate information sharing, 00:07:00.701 --> 00:07:05.187 as well as actively advocate for carers on an international level. 00:07:05.187 --> 00:07:10.043 Private entities are also starting to recognize the situation of carers. 00:07:10.043 --> 00:07:12.331 I am proud that my personal engagement 00:07:12.331 --> 00:07:14.786 and enthusiasm towards this topic of carers 00:07:14.786 --> 00:07:17.780 found an echo in my own workplace. 00:07:17.780 --> 00:07:20.384 My company is committed to this cause, 00:07:20.384 --> 00:07:23.814 and has developed an unprecedented framework 00:07:23.814 --> 00:07:26.717 for its employees and society as a whole. 00:07:26.717 --> 00:07:29.169 The objective is to empower carers 00:07:29.169 --> 00:07:31.580 to improve their own health and wellbeing 00:07:31.580 --> 00:07:35.019 and bring about a greater balance to their lives. NOTE Paragraph 00:07:35.019 --> 00:07:38.347 Nevertheless, much more needs to be done 00:07:38.347 --> 00:07:42.260 to complement these relatively isolated initiatives. 00:07:42.260 --> 00:07:45.443 Our societies are facing increase health pressures, 00:07:45.443 --> 00:07:47.533 including aging populations, 00:07:47.533 --> 00:07:50.963 increased incident of cancer and chronic conditions, 00:07:50.963 --> 00:07:53.257 widespread inequality, 00:07:53.257 --> 00:07:55.275 amongst many others. 00:07:55.275 --> 00:07:57.108 to confront these challenges, 00:07:57.108 --> 00:08:00.914 policymakers must look beyond traditional healthcare pathways 00:08:00.914 --> 00:08:02.672 and employment policies 00:08:02.672 --> 00:08:05.140 and recognize that informal care 00:08:05.140 --> 00:08:08.907 will continue to form the bedrock of care. NOTE Paragraph 00:08:08.907 --> 00:08:12.382 Caring for someone should be a choice, 00:08:12.382 --> 00:08:19.479 and should be done without putting one's own wellbeing in the balance. 00:08:19.479 --> 00:08:24.020 But to really put the care back into the healthcare, 00:08:24.020 --> 00:08:30.125 what's needed is a deep, societal, structural change, 00:08:30.125 --> 00:08:33.602 and this can only happen through a change in mindset. 00:08:33.602 --> 00:08:36.317 And this can start today. 00:08:36.317 --> 00:08:39.475 Today, we can plant the seed for a change 00:08:39.475 --> 00:08:42.316 for millions of carers around the world. 00:08:42.316 --> 00:08:44.439 Here's what I want to suggest: 00:08:44.439 --> 00:08:46.318 when you go home today, 00:08:46.318 --> 00:08:48.929 or to the office tomorrow morning, 00:08:48.929 --> 00:08:51.092 embrace a carer. 00:08:51.092 --> 00:08:53.106 Thank them, 00:08:53.106 --> 00:08:55.610 offer him or her a bit of help, 00:08:55.610 --> 00:09:00.895 maybe even volunteer as a carer yourself for a couple hours a week. 00:09:00.895 --> 00:09:03.211 If carers around the world felt better-recognized, 00:09:03.211 --> 00:09:05.917 it would not only improve their own health and wellbeing 00:09:05.917 --> 00:09:07.690 and sense of fulfillment, 00:09:07.690 --> 00:09:11.873 but it would also improve the lives of those that they're caring for. 00:09:11.873 --> 00:09:13.611 Let's care more. NOTE Paragraph 00:09:13.611 --> 00:09:15.060 Thank you. NOTE Paragraph 00:09:15.060 --> 00:09:17.743 (Applause)