Tersia Burger

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Welcome to another edition of Expedition Business, where we talk to inspiring South African entrepreneurs about the highs and lows of their business journeys and how on earth they managed to keep the flame of business adventure burning. Of course, facing your day with a smile is sometimes the toughest thing you have to do. My name is Christél Rosslee-Venter, your host

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and one privileged enough to be talking to Tersia Burger, CEO and founder of Stepping Stones Hospice. But before I introduce Tersia to you, I would like to remind you to like, subscribe and share this podcast with as many of your friends and family as possible. Without your help we.

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cannot continue to share the amazing stories of our entrepreneurs in South Africa. Tersia, welcome to Expedition Business. 

Tersia: Christél, thank you so much. It’s such an honor being here and being interviewed by you. You’re a very esteemed member of the community. 

Christél: Thank you so much, but I feel that’s a very debatable subject. 

Tersia: No, no, true story.

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Christél: But thank you very much and it’s an absolute honor to have you here in our studio today. But do you want to quickly, I’ve mentioned that you’re not quite an entrepreneur in the same sense as what we normally talk to. Just quickly, where did Stepping Stones come from? How did it happen that you made a complete change in your career? 

Tersia: My daughter was born with a degenerative bone and tissue disease and she really had

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horrific suffering throughout her life. She was born with a rare disease and it was her dying wish that I start a hospice in Alberton so that no one would suffer the way she did. 

Christél: Speaking of Vicky’s whole journey, she started with her first broken bone when she was a couple of weeks old. 

Tersia: Yeah, she was three weeks old.

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When she had her first fracture, by her third birthday, she’d had 41 fractures. And in the last years of her life, she had a lot of symptoms like vomiting and nausea and stuff. She would fracture vertebra from vomiting. So it really is a horrible, horrible disease. 

Christél: Wow. But before you started at Stepping Stones Hospice, you were in corporate life.

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Tell us a bit about that. 

Tersia: Yeah, I was in a vehicle arm-wring. So I spent many, many months of my life in war zones, like Afghanistan, Kuwait, Yemen, Saudi. We worked with the United Nations, and it wasn’t war vehicles, but it was riot control and policing vehicles. So it’s totally

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different. I’d never worked with women before stepping stone. I’d only ever worked in a male dominated world full of Muslim gentlemen who had to grow used to this old lady that interfered in their lives. So yeah. 

Christél: I look at the difference that you’ve made in Alberton and I can just imagine how different it must have been for them having you there.

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Tersia: I was the first female to ever attend trials on military grounds in Saudi Arabia, ever. And I had meetings with the president of Yemen, and I couldn’t go into the palace, and I couldn’t go into many of their buildings because they didn’t have toilet facilities for women. And we’d have to meet

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in gazebos and stuff outside where I was permitted to be. 

Christél: Wow, absolutely incredible. And you survived that. 

Tersia: Well, I loved it. 

Christél: Okay, do you ever think back on how different things would have been if you stayed there? 

Tersia: I know I would have had a lot more money. 

Christél: Okay. 

Tersia: I don’t ever want to do anything else than what I’m doing now. This is such a different world to

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that I worked in. It’s gentle, it’s sacred. It’s really, you enter into a sacred space with patients. The staff are incredible. No, I wouldn’t ever go back to that. 

Christél: You started Stepping Stones Hospice in 2013? 

Tersia: 2013, 1st January 2013. 

Christél: And that was just before Vicky died? 

Tersia: Yeah, Vicky was our first patient.

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And she died on the 18th of January. She was our first death as well. First patient, first death. 

Christél: Yeah, I’ve heard that story so many times but just listening to it again is so sad, but so inspirational because if it wasn’t for that you wouldn’t have helped so many patients in Alberton and the area.

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Tersia: There are times that I do stand in the inpatient unit and Vicki’s photographs are buried in the foundation of the building. And I will actually put my hand on the door and just say quiet little prayer and ask God, why not somebody else? Why my child? And then I do realize that the purpose of her life was fulfilled.

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When we started hospice. In 2007, she was ventilated for a long period and they said she had no hope of any recovery and they actually switched off the ventilator and she carried on breathing. It wasn’t goo, but her life purpose was stepping stone. I’m just the instrument, that’s all.

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Christél: That is incredible. But you started the inpatient unit only in 2015, two years later. 

Tersia: No, we started in the October 2013. 

Christél: Okay. 

Tersia: No, no, we did start in, we started out of my house and then in the April, we got a little office on Amcares premises and they then gave us land on which we could put up a building. 

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So we opened in October 2013. 

Christél: Question that I have, it’s obviously incredible work that you do, but that’s where the entrepreneurship comes in, or social entrepreneurship is, somebody has to pay for everything. How on earth do you manage that? 

Tersia: Oh, lots of prayers. No, and hard work. God only helps those that help themselves.

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Stepping Stone is a business. It may be a non-profit, it is a non-profit, but if you don’t run it as a business, you cannot survive. We have overheads of a million rand a month. We get very, very, very little funding from government. In February, the vast majority of our patients weren’t able to make any contribution to their care,

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at all and we have to make sure that our 49 staff members get paid. So there’s, we do a lot of fundraising. We operate on a shoestring. By far our greatest expense is salaries. We do pay rent, we do pay electricity, we do pay water, we pay everything that any other business pays.

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We have a charity shop that makes an amazing contribution to our expenses. It’s a business. And if you take your eye off that, you will fail. 

Christél: I can imagine. Stepping Stones have been going for how many years now? 

Tersia: 12, 13, our 13th year. 

Christél: And you’ve never felt like this is it. You’ve had enough.

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Tersia: I’m going to lie if I say I didn’t. There are times that it’s rough. I think it’s the emotion, Christél, that gets to you. 

Christél: Just quickly, how long do people normally stay when they come to Stepping Stones Hospice? 

Tersia: Sadly, some people come in because of late referrals by their doctors and they’re in for a day or two.

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and they die. Last month we had a patient who’d been with us for 1,149 days. 

Christél: Wow. 

Tersia: People are with us for years. You know, we look after them at home. Our nurse would visit them once a month. We manage their pain, their symptoms. We liaise with their doctors when their symptoms become very

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difficult to control at home. We’ll bring them into the inpatient unit for a week, two weeks or to give the family a break because it’s exhausting looking after a very ill patient. People want to live when they have quality of life. So if we can control the nausea and the pain, they want to go up. They want to spend time with their families.

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But when you’re constantly sick and miserable, who wants to live? That isn’t quality of living. So yes, but generally patients are referred to us too late. It’s seldom, not seldom, it does happen. We have responsible doctors who do refer on time usually. And it doesn’t mean that it’s not a death sentence.

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Palliative care is a different layer of care. 

Christél: Okay. 

Tersia: So our nurses are all ICU trained surgeons. They’ve all done surgery or ER. They’ve done all that nursing, and then they have an additional one year UCT training course that qualifies them to provide palliative care.

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So it’s a science. It’s not the fact that it’s offered by nonprofits doesn’t make it substandard at any stage. It really is world-class care. 

Christél: Just quickly going back to where you said people should be referred to you much earlier, but that means that the expenses are higher. And in a lot of cases, people can’t pay for it. 

Tersia: That’s why we do fundraisers.. But the medical aids

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do pay for palliative care. So once a patient reaches a certain stage in their cancer trajectory and there is no cure, Discovery, for instance, would give them an advanced illness benefit, which is unlimited. And they would pay us to see the patient at home and manage them. And we keep them out of hospital. Hospitals are

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viciously expensive. And if they’re unable to pay, it doesn’t matter, we still care for them. 

Christél: So how does the sponsorship side of things work? Do you have people dedicated to finding sponsorships? 

Tersia: We have, I do fundraising and I have a fundraiser. And then I think we all just

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fundraise. We try and stay in the media as much as possible. We create awareness and speak at schools and retirement villages. We’ve been blessed that we’ve received a number of legacies from estates. 

Christél: Okay. So how does the legacy from a state work?

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Tersia: People leave a percentage of their estate to us, or a policy to us, or a fixed amount. They would just write it into their will. 

Christél: So if your biggest wish to get more money, what would that be? Getting more people to give their estate? 

Tersia: That would be amazing, as long as I don’t know them. That’s all right. But.

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My second biggest wish would just be getting into the Lotto website so we can apply for Lotto funding. It’s an absolute mess at the moment. We can’t register on the portal. There’s huge problems with it. We should be funded by them with Hospice South Africa. I’m very involved in seeking funding from

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the Department of Health and expanding our services to other medical aids. We can’t always only rely on fundraising. 

Christél: Because the reality is, and I’ve been to a couple of these fundraisers where you get like a couple of hundred Rand here and a thousand bucks there, and that’s not gonna make a big difference. 

Tersia: Yeah, we had a thing at the Newmarket Mall,

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where we introduced our mascot. And we had five people there talking to people. And the total sum of the donations from nine o’clock to two o’clock was R656. It comes in bits and bobs, but every cent that we get is a cent we didn’t have. I spoke at a church,

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and a lady and a couple came to me and they said they’re now going to cancel their You subscription every second week. They’ll get their You and the other two weeks we can get the money. 

Christél: Oh wow. 

Tersia: You know, and we might talk about the biggest donation we ever had. 

Christél: Please do so. 

Tersia: We had a patient, Mr. Moetlese, he lived in

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squatter camp. He had a trache and he was desperately, desperately ill and we couldn’t put a caregiver with him so we took him, brought him into the inpatient unit in a couple of days. Every time we walked into his room he would take our hands and put it on his heart and say thank you. And when the day when…

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When you would pass, we phoned the family. We said, come, you must come. You must come. And we kept phoning and phoning. And eventually the phones just went on to silent and they arrived five minutes late. And what we didn’t know, and I said, why weren’t you here? Your dad needed you. And they said, they pushed the mother in a wheelchair from Zonkizizwe,

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to the unit because they didn’t have taxi money. And when they left, they thanked us for looking after their father and gave us R10. And I know that’s every single cent that they had. It’s not money that came out of the excess of millions that they had lying. They gave us every single cent that they had.

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So there’s no such thing as a small donation. It all adds up. 

Christél: Wow. That is goosebumps stuff. 

Tersia: Yeah. 

Christél: But how do you continue living through all these emotional moments? 

Tersia: A patient comes in and they vomiting with pain. And an hour later, they’re sitting in the garden having a cup of tea with their family. That’s.

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That’s why we can do it. It’s making a difference. Nobody should die screaming in pain. Nobody should live the life that my child lived, screaming like a wild animal in pain. Hospices are, we’re specialists in pain control. We’re specialists in symptom management. And when we make a difference and…

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People die, yes they do die. We didn’t give them cancer. We didn’t give them renal failure or whatever disease they were diagnosed with. We gave them life until they died. And that is how we can carry on. 

Christél: Well, but in the end you’re still human.

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You run out of energy or don’t you ever run out of energy? 

Tersia: No, we do. You know, so I’m very blessed. I have a best friend. And when her husband died, I said, I will see you every Wednesday night. You will come and have vegetables. So every Wednesday night, Judy arrives. And we debrief. And we do.

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Just talking to someone, sometimes just crying or laughing. We laugh more than we cry. It helps. I love my garden. I take my shoes off and I walk in the grass and I ground myself. I read every night before I go to sleep, else I don’t sleep, so I read myself asleep. And I am so…

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It’s a privilege to do what I do. I don’t ever want to stop doing it. And sometimes we have to step back. We do debriefing for our staff. The children’s section is very hard. Our first patient that was referred to us was a three-month-old baby with the same disease that Vicky had, osteogenesis imperfecta.

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She didn’t survive because her little rib cage was so fragile that it just collapsed.

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In December, we had a wonderful Christmas day. One of the families came and they brought Santa and wonderful food and stuff. And we took the kids from the kids unit with their families to the adult unit. And we got these beautiful photographs of them with their families. And on the 26th, the one little boy was

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running a little bit of a temp, nothing that was abnormal. On the morning of the 27th, he was restless and nothing abnormal. And his nurse just held him and she was rocking him and he died in her arms. Just his little heart just gave in, no warning, nothing.

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And that is soul destroying. You know, it’s when the little ones who haven’t lived, as we’ve lived good lives, the little ones are, they’re very hard to deal with. 

Christél: So how on earth do you keep on going with these little ones? I know that my child should have had

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received palliative care from birth or from diagnosis. She was diagnosed at 18 months. Vicky should have had palliative care throughout her life, not only the last five and a half months of her life. So rare disease children, as a matter of fact, all the children that we’re caring for at the moment have rare diseases and not cancer. 

Christél: Okay.

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Tersia: So rare diseases is really, it’s a killer and there’s just very little care available. 

Christél: And do you find it something that is on the increase or is it the same as ever? No, I think it’s maybe we’re more exposed to it now. I did ask an oncologist whether cancer was on the increase and she said no.

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Diagnostics is just so much better that they’re able to pick up cancer a lot sooner. In the olden days, you died of stomach ache. You had a tummy ache for years or whatever, and you were never diagnosed. So maybe the children were hidden, but one little girl, Lulu, wasn’t supposed to live

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to the age of one and good nursing care. She’s eight now, I think, and she’s doing fantastically. She set up on her own two weeks ago and that’s just, it’s good nursing care. 

Christél: Incredible. Tersia, you mentioned earlier the Palliative Care Association South Africa, not sure if I got that name right.

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But you’re also involved as the chairperson of a national palliative care organization. So we all belong to a national association and the job of the national association is to make sure that we adhere to standards and that we have policies and governance and everything in place.

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and qualified staff. And then we have regional, provincial groups that report into. So I’m chairperson of Gauteng. Vice chair of National. And at the moment, I’ve been seconded by Stepping Stone to the association for a period of three months.

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To be interim CEO. 

Christél: How on earth do you get time for all of this? 

Tersia: I love work. I just love work. I’d rather work than do anything else in the world. 

Christél: Absolutely incredible and just coming back to the personal side you’ve also lost your husband a while ago. 

Tersia: Yeah and it’s something that really angers me is…

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He was misdiagnosed for two and a half years and he suffered incredible pain. But if you’re not diagnosed, then what do you treat as hospice? We need a doctor’s referral with a firm diagnosis and a guideline on what pain medication you’ve been on, where Danie developed a sore foot.

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And he was diagnosed with gout and rheumatoid arthritis. And when he eventually, his toes started going black. He had an angiogram. They discovered that he had a rare disease. He had synovial sarcoma. And his foot had been eaten away by the cancer. And

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It’s really horrible because I used to fight with him and say, you need to get exercise. You’ve got to get out of bed. And he’d say, you have no idea how much pain I’m in. So he he did have his leg amputated. And then it was a palliative procedure. And then he came to hospice,

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and he died in our care two and a half weeks later. But he was treated with dignity and respect. And the amazing thing is with all my knowledge, and I’ve stood next to hundreds of beds of patients that are dying, I became a wife and not a caregiver. And I’m so grateful to it.

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It was hard on our staff because in their culture, I’m their mother and Danie was their father. The nurses called Margie and said, we want a male nurse on duty when we deal with Nkulu. And I’m just so grateful for the privilege of him dying pain-free and symptom-free and calm and loved.

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Christél: And to some degree that’s thanks to Vicky. 

Tersia: It’s all thanks to Vicky, yeah. 

Christél: Absolutely amazing. Just getting back to the business side of things, which I think we need to do. How many patients roughly have you dealt with since starting Stepping Stones Hospice?

Tersia:  Just on 4,000. So we have on average between 120 or 130,

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and 160 patients, we lose 30 a month and we get 30 new patients. So our patient numbers always remain constant. We are hoping, we bought land in Raceview, four stands. On the first two stands we renovated the house into the baby unit and it’s really exquisite.

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And then next door we want to build a 14-bed adult facility. Our existing facility is inadequate, but we will use that as a pre-terminal frail care. You have no idea how many people, old people, the kids are living in the UK or Australia, they don’t have a cooking clue what’s happening,

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in South Africa and things are rough and the parents cancelled their medical aids and we find them living in the most horrible circumstances, often in the backyard of a sister or a cousin or somebody’s home. So those beds will then be utilized for patients who need

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24-7 care, but don’t have 30 and 40 thousand rand a month for frail care. That’s the cost of a frail care. 

Christél: To make this possible, what do you need? 

Tersia: I need six million for my building and I need, we need monthly debit orders. If we, every month we start with zero money. We know what the medical aids owe us. We know the little bit,

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that we’re going to get from the Department of Health. But we still about 600,000 short a month. So if we had debit orders, and I knew, so I know right now we do have debit orders of just on 90,000. If I could get 190,000, that would, if Alberton, if every household in Alberton gave us 50 Rand a month.

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Per household, we would never ever have to ask for money. We would make it work. And people think a donation’s gotta be millions. Every single cent adds up. 

Christél: You’ve mentioned earlier, somebody canceling their you subscription. 

Tersia: Yes. 

Christél: Or only half of it.

Terse: Half of it, yeah. 

Christél: And the rest contributing it to you. So it’s not that difficult.

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to get 50 rand a month together to give to hospice? 

Tersia: It’s a dessert if you go and eat out. It’s a dessert costs you more than 50 rand. And you can share your partner’s dessert if you have to, you know. But I’m sure that if there was a will, we would be able to get, be able to care for every single vulnerable

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person out there. Two million ill people out there. And the reality is that there’s so many more people that you can’t help. We only get to 14 percent. That’s international figure. I believe that we get to less. Part of it is also, Christél, there’s so many myths about hospice. People think you only come to us to die. You can come into hospice.

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We can wheel you down to your room and we’re gonna give you an injection and you’re gonna die. No, doesn’t work that way. We don’t believe in euthanasia or physician assisted death. 

Christél: So Tersia, just coming back to what you need to help Stepping Stones Hospice continue what they do. Anything else that you need?

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We currently have about 40 volunteers. We’ve just finished a companionship communication training course. All our volunteers have to undergo training before they’re allowed to interact with patients. So they taught communication skills and also stepping into family shoes and stepping out.

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Because if you stay in a family of shoes, you will die. You cannot survive the emotion of working with patients or at a hospice. We need goods for our second-hand shop, furniture, cars. 

Christél: Preferably working cars. 

Tersia: Yes, yes, yes, working cars. That would be great. Money, it always comes down to money.

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You know, some schools have a wonderful drive and they will collect cleaning materials from the classes. We got a Pink Bin campaign where Pink Bins go to schools and the kids put clothes in there. And it’s good clothes, teenage clothes, which we’re able to sell at very good prices to often less fortunate people. And prayers. It’s

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really rough work and no matter who you believe in, we all believe in someone. We need the community to pray for us and leave us a legacy. That would be great.

Christél: Just a quick question which I should have asked in the beginning is normally people think when you go to a hospice you go to die. 

Tersia: Not true. We’re all gonna die.

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There’s not one of us who’s not going to die. It’s a layer of care. It’s written into the new NHI. It’s a basic human right, the right to palliative care. And I actually fear what’s going to happen in our country, the USA.

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TB medication that’s being withdrawn so abruptly. And I think to a large extent, we escaped massive death during COVID because so many of our patients are on antiretroviral medication. And there’s a theory that helped. But if you miss

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those of your ARVs or your TB medication, you become resistant, drug resistant, and really is scary for us. Just to so many hospices, we’d never applied for any of those, that funding, but I know that some of the other hospices have just had to retrench.

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up to 150 staff members. 

And what happened to those patients? Well, they’re out there. Now they are at the mercy of the government, who I don’t believe have the infrastructure to look after them and to care for them. And whatever action plans are put in place, it’s a big ship to turn.

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It’s going to take a long, long time. 

Christél: Tersia, just to wrap up things, anyone else that wants to start not necessarily a hospice, but a social entrepreneurship program? What would your advice be to them? 

Tersia: Don’t. If I’d known how much

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admin and paperwork and governance stuff there is in running a hospice. I think I would have thought twice and I would have argued with Vicki when she said, promise me, I would have negotiated, can’t I start something else? Really something. It’s hard. It really, really is hard. Emotionally, it’s hard.

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Financially it’s really hard. But I would recommend that the first thing that they get in order is that they appoint auditors, good reliable auditors, and that their governance is in place. Before you start looking for money or anything, you have to

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and be able to responsibly manage what you’re going to be interested with. 

Christél: So you need an auditor? 

Tersia: Definitely need an auditor. 

Christél: And good accounting system? 

Tersia: Very much so, yeah. 

Christél: And lots of money? 

Tersia: Lots of money. And if you’ve got a house, I bonded my property twice, because I started it.

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And the first 18, 20 months I carried all the expenses. So you gotta know you’re never gonna retire because you’re always gonna have a bond to pay off. 

Christél: But you’re moving now. 

Tersia: Yeah, I am. 

Christél: Big change in your life. 

Tersia: Yes, yes, it’s scary. We lived in our home for 25 years and it’s filled with so many beautiful memories and so much,

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laughter and peace. But the maintenance is killing me and it’s too big. I need to live in a place where I can be bond free and… 

Christél: A new life. 

Tersia: A new life. 

Christél: What’s that, life 2.0, life 3.0? And where do you draw the line? 

Tersia: Somebody asked me the other day, she said, how many summers do you think you have left?

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I’m going to ask you the same question. How many summers do you think you have left at your age? So I said I think I’ve got another eight. I mean I think it’s fair. And she said what are you going to do with it? What are you going to do with your last eight summers? So I’m hoping to travel more.

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Not read a book, write a book. 

Christél: Yes.

Tersia: I want to write a book. I did a blog when Vicky was dying and she wanted me to write a book on it because if it helped one person, then she felt her life would have been worth it. I write, I want to write about hospice because there’s so many…

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You know, if you come into the unit, you will hear a lot of laughter. You will hear crying as well. But we often say to the families, the greatest gift you can give your loved one when you’re sitting next to that deathbed is talking about the happy times. And let your loved one know that,

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they left a mark on your life that you did a good job. So it’s, yeah. 

Christél: Just speaking of talking about happy memories, I can also see going through photos of everything you’ve done for your life while going through that process and reliving it. 

Tersia: It’s part of a story. You never forget. There isn’t a day of my life.

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I think that I don’t cry tears for my child. I miss my husband desperately. And they made me who I am. And I honor their memories and their legacy every day of my life. And it’s what drives me is making a difference in their name. Because it’s not me, I’m a sissy.

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Personally, I can’t do pain at all. 

Christél: Okay, I cannot imagine that. 

Tersia: No, no. When I was, when Danie was still alive and I got flu, and I heard him come up the stairs to our room, I would lie there and go, ah, ah.

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Christél: Ah, shame. What sort of books do you read?

Tersia: Oh, wonderful crime stories. 

Christél: Okay. 

Tersia: I love crime and legal stories, mindless stuff, you know. 

Christél: Okay. Music? 

Tersia: I love classical music. I love ballet. 

Christél: Yes. 

Tersia: But I also love country music. 

Christél: Nothing wrong with that. Okay. Last final wishes, motivational thoughts that you could help

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to inspire our social entrepreneurs? 

Tersia: I want them to always remember that there’s a wonderful book that they should read, The Fish Rots from the Head. Dr. Bob Garrett wrote it. It’s a brilliant book. And as a leader of a team, you must always be above reproach and you gotta lead from the front. You cannot

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ask of your staff or your volunteers or your community to do what you’re not prepared to do and to look for the opportunities. There’s always an opportunity somewhere. 

Christél: Lots of summits to climb out still. 

Tersia: Yes, lots of summits to climb. 

Christél: I think that’s one thing you mentioned what you do to relax. We still need you to come and hike with us. 

Tersia: I do want to do the Camino but

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I don’t want to hike, I want to walk straight. I do have a dream of walking, doing the Camino, but as a pilgrimage, I don’t think I’ve ever really mourned Vic. I’m not letting her go, so maybe if I do the pilgrimage, I could finally let her go. I don’t know.