Transcript 3

Hello, this is Talking to Titans with me Gudrun Moore professor of molecular genetics at UCL’s Institute of Child Health.

And me Cathy Giangrande, UCLA alumna, art historian and conservation scientist.

In this podcast, we're talking to some of the titans of academia.They’re women at the top of their academic game, who with their wisdom will hopefully inspire and equip you in your own careers. I wish my younger self had heard some of these discussions. In this episode, we're joined by Ruth Kennedy, founder of the Louis Dundas centre for children's palliative care at Great Ormond Street Hospital and an Honorary Fellow at UCL. Hi, Ruth.

Hi there.

Could you tell us a bit about what you do and how you became part of the university?

I became part of the university because 10 years ago, my son died of cancer. He Had a thermal glioma. And after he died, my husband and I decided that we want to invest time into Palliative Care Research. So we set up a centre in his name called the Louis Dundas Centre for children's palliative care. It's an academic and Clinical Centre based between Great Ormond Street Hospital and UCLA, I ch and as a result of that, one of the professors involved with my centre very kindly put me forward for an honorary fellowship, which was a huge privilege for me.

What exactly does the Louis Dundas Centre do?

Louis Dundas Centre is a virtual centre based between ICH and Great Ormond Street Hospital. We decided to set it up because our experience with our son who suffered tremendous pain and the variety of very, very difficult symptoms made us believe that there was a lack of research capacitive care. what we thought was needed was an enterprise which could observe, examine and understand the lives of ill children and their families, and then translate this research into best practice. So it's Centre for Academic, clinical and translational research. I mean,

That's pretty amazing thing to do. How did you have the strength to do that after losing your son? I can't even imagine what that could be like.

I think it's because of my son suffering that we were able to do it. I think that when people understand that my son died. The usual response to that is that people understand that I'm a bereaved mother. But what they don't really see is that it was the trauma of witnessing what he experienced in the 13 months of his illness. That was by far worse than his death. For me. Our mission for the Louis Dundas Centre was And remains today to reduce suffering for children with life limiting and life threatening illnesses. And if you had watched what my son went through for 13 months, from chronic pain, to the threat of seizures, to itching, observation, swelling, paralysis and blindness. When he actually died, it didn't really seem difficult to me to find the courage to make the time and the commitment to build the centre because nothing that I've ever done is as brave as what he went through.

How did your friends react to that?

My friends were very supportive of me when we start established the Louis Dundas Centre But what was interesting was that despite my position of intense privilege, most of my friends didn't really understand what the word pallet of meant, and they certainly didn't understand it in relation to children. And so a large part of our world has been around explaining that the world of palliative care involves children with life-threatening and, and other illnesses. And what was what was interesting is that I didn't really understand what it meant, despite the fact that I had been involved with the Elton John AIDS Foundation, since its foundation. And you know, I'm a patron of the foundation. And of course, I now know what it means. But it says interesting that, you know, 10 years ago, people were uncomfortable to talk about it. And I think that huge strides have been made. And I think that we should be able to talk about death, because it's a reality. And unfortunately, it's a reality for children. Sometimes,

Were you working at the same time when Louie was ill?

I was working as a CEO for a private real estate company, a very large company called Quinn and private and I worked at the very, very beginning. Then I stopped working for three months as we went through radiation and chemotherapy. And as we waited for the results from the chemo, to see whether the tumour had shrunk, I went back to work a couple of days. But within a month by July, we'd been told that the treatment hadn't worked. And, and actually, we were told that Louie would die within a month that he didn't actually die for another eight months. And of course, now I didn't go back to work and, and I was incredibly lucky that my colleagues and seniors at work was supportive. And how about the rest of your family? I mean, you have other children. I do have an older son called Alfie. He was eight at the time. One of the biggest difficulties we had with Larry's illness was that he suffered so many pain breakthroughs and bye bye a pain breakthrough. I mean, a spike in pain that unmanageable homes usually require admission into a&e. And it just so happened that every single time that happened in the 13 months of Louisiana's Alfie was by his side watching him. So first of all, there was the trauma, what he was witnessing. But secondly, we decided to try some treatment in the United States. And we went to the States, we went to New York, to Memorial Sloan Kettering, and we had to make a decision about whether to take AFI with us and we decided that we would take him with us. So his first month in New York was spent in a waiting room in a Children's Cancer Center because, of course, siblings aren't allowed into the actual rooms where children are being treated. Aftermath they realized that that wasn't a good idea. So I found some friends in New York and said, because somebody helped me find a school that will let my son in Fatimah, and one day and we dropped him off at a strange school with a strange group of people and a teacher had never met before. And that's what his life was for the next eight weeks. I also have four stepchildren and we're incredibly close as a family. They're much older than my son, but they were still super connected to Louie. So it was difficult for everybody.

And still must be I mean grief, it's not something that moves away.

Now that's true. One of the problems about losing a child is that in a family like ours, where you have me very close to my family, very is very close to his family. It always seemed like on it on any given day, when you are feeling tearful, somebody else was feeling despair. Until you're constantly in this cycle of reconnecting with your sadness all the time, even when you don't expect it, you're driving to Tesco’s and you turn the radio on and Tiny Dancer comes on. And then next thing you need his sobbing from the back of the car. And you're right back where you were, but there's a brilliant quote by one of my favourite writers Chinua Achebe, he says when suffering knocks at your door, and you say there is no seat for him, he tells you not to worry because he's brought his own story.

Do you think grief that there is enough support for this whole situation where whole family is grieving?

I think one of the difficulties is how people know about an access support. At the Louis Dundas Centre, we spent a lot of time working on and researching the psychosocial aspects of bereavement and pre bereavement. I think the biggest problem with parents and siblings who are losing a member of their family or where they've already died, is that they are not the people who are going to reach out and ask for help. So their community needs to reach in and say, Hey, we're here. This is what we can do. This is how we can help you. And I think that that's got much better in the last 10 years. And there's some fantastic charities that help with in that area, child bereavement being one of them what skill sets Did you have before you embarked on this to make this happen? I mean, you were in the corporate world. I read law University and I started life as an investment banker in the city in 1987. Three weeks before Black Monday was really weird because there was a storm that night before Black Monday and for about four hours, I thought the two things were connected as the stock market crashed and everybody around me was screaming. It shows how much they knew about what I was doing when I went on to investment banking. But I realized after about 48 hours that investment banking wasn't for me. But I waited for three years before I left and it gave me a fun, phenomenal training. And after I left I went to work with a furniture designer called David Lindley, who remains to this day one of my best friends and together we built a business where we sold furniture and interior design that that gave me I suppose, an entrepreneurial edge about how to approach business and from then I moved on to a very large company which managed luxury hotels and luxury residents So developments and after that Louie got sick,

That was quite a change that wasn't it from banking to something probably less maybe profitable.

Right when I told him my father was a diplomat, you know, comes from a Manchester and he was super proud. All four of his children gone to university and they were all professionals. My sister was a solicitor, my older brother was a banker, and then I was at war bags. Oh, how exciting that I called him up one day and said, Dad, I'm going to work for this guy's got a small shop down the bottom of the new kings raid. Honestly, he cried. My mother just said in the background, do it. Just go for it. She was my introduction to Philanthropy In, in the practical sense. My dad was a diplomat, a very successful diplomat. We lived in eight countries. He spoke eight languages. He was very academic and my mom was behind them in a caftan and gold sample, saying to the dignitary that had come for dinner, would you like a quick Whiskey in the kitchen. And inevitably, that's where all the good chats took place. But in those days, women who were married to diplomats weren't allowed to work, right. And she was a qualified teacher. So what she did is in every country that we lived in, she decided to find her own thing. So an example she looked after disabled children, who she taught who came to our house when my dad was at work. In Nigeria, she did the same thing. And when the AIDS virus first broke out, she was the first person that I needed to volunteer. She got on a plane, she went to Zambia, she went to live with some nuns. And she went and looked after people herself. That was my mother's thing. She was good at looking after people. It's always cheesy when you hear people credit their parents for why they get the strength to do something. But they always taught me to that I could do anything that I wanted to do.

So having a really good sort of solid beginning when you have Parents and or someone else grandparents behind you really does matter what happens when you don't have those?

People find strength from the place that they go to that gives them that stability. And it isn't necessarily your parents. Now, it could be your neighbour, it could be a person who lives down the road, it could be a friend of the family, it could be your friends, parents, the biggest thing I think you need to do is you need to be able to reach out and ask for help. Right? And if you think you're going to feel embarrassed or you think you're going to get pushed back, just try it once or twice and then you'll see it's normally the negative voices in our own head that stops that conversation happening.

Do you think that the at the top of businesses universities, is it still male dominated in your eyes?

Well, we know what the statistics are on directors in the UK we've we've hit the 30% mark, which is a real achievement. It's still true that there there are not enough women and positions in private companies and public companies.

What advice would you give to a young woman thinking about moving up to the top

The advice that I give people about how to make the best career choices for themselves? It's called the hedgehog principle. It's essentially a Venn diagram with three circles. And in one circle, you have passion. And in another circle, you have the skill set. And then the third circle, you have economic drivers. So in the case of an individual, their salary requirements, and the most important thing is to be honest about yourself in assessing those three things. What am I really interested in? What do I feel passionate about? What am I really interested in my heart? And the second thing is, what am I good at? There's no point in in trying to do a job where you have to have math if you can't do math, right? And the third section is a really honest appraisal about how much money do I need to When you get the sweet spot in the middle, that's when I think you start to make really good decisions. I can't remember a time in my first 20 years of my life where somebody asked me, What are you passionate about? What are you really interested in and what what drives you will help you access to happiness that you need through what you should wake up in the morning and feel really excited about going to work. Young women looking at working in companies where they feel that they're male dominated or where they feel there's an imbalance at board level. You need to trust your instinct. Everybody puts so much emphasis on science and data and analysis. But actually, you need to really listen to yourself and trust your instinct more women tend to not trust their instincts enough. There's a brilliant quote by Einstein, which is the intuitive mind is a sacred gift and the rational mind as a faithful servant. We have created a society that honours the servant and has forgotten the gift. And the fact is in life we need in business, we need both the intuitive and the rational. every business, every workplace, and every home needs a balance of both. I remember saying that to my Chairman wants, you know, I just feel that this is the right thing to do. And he said, Well, it feel is not good enough, because he couldn't relate to that exactly couldn't relate to it, or you take your intuition and get a little bit of scientific data around it. And then the same message,

Is there really say anything, obviously, apart from the Louis Dundas Centre that you're especially proud of?

I'm proud that I'm still married. Grief isn't brilliant for marriages. It's lonely journey that you take on your own, and then you keep if you keep going without watching it. It can be very divisive. Yeah.

How did you deal with that? I mean, he grieved like you grieved, I'm sure. Yes.

I mean, the truth is, I didn't think we were that supportive to each other. I think my husband became very silent and I was very angry. And those two things are perfectly normal aspects of bereavement. But he's an extremely funny man. He's also very handsome. So when he was most annoying me, sometimes his humor and handsomeness could pierce through the darkest times, and I promise you if he hadn't been funny, we would never have made it. But I think it's something that people just have to realize you have to wait and not try to always make it better. Sometimes you just have to wait and let a little bit of time pass and get professional help. For me personally, I found it easier to speak to a professional than I did to my best friend. I'm very, you know, I have a very close family. I'm super close to my brothers and sisters. But sometimes you need to speak to somebody who's a professional for them to really be able to help you navigate through the darkness.

Yeah, maybe we need to get back to it. We out a bit more and stop being quite so proud. And pretending we're okay when, when we're not.

I think that's true. And I think also, people make assumptions about how people are going to feel when somebody is breathed, I remember somebody saying to me, about a year after Lou died, look, I've I've got four children, and it must be very difficult for you to be around us because they were friends of Louis’. And, you know, if it's too difficult for you, then you must let me know and I looked, I thought she mad. And but taking apart It was like, that wasn't the thing. And sometimes we make assumptions about how people feel, and we're operating on the wrong assumption. And we've actually we've found that in the research at the Louis Dundas Centre about when people have suffered from brain tumors, their definition of quality of life was completely different. The clinicians definition of quality life and service relief in the same way, as people might be thinking quality of life for this child means being absent of pain, an absence of symptoms, but actually to the child means Can I see my peer group? Do I get to go back to school? Can people stop behaving normally around me? So it is with brief people. People are making assumptions that this is how they feel, or this is how they feel. But actually, they don't know. And that's why everybody needs to talk. And it's very difficult with young children, because they don't have the language to articulate their deepest feelings. And one of the biggest surprises to me at the Louis Dundas Centre, which was about the barriers to research through ethics, because in a in a paediatric situation, a lot of questions aren't being asked of moms and dads before their children die and after that Tottenham died and to the children for ethical reasons. But actually Now as a mother whose child was dying, I would totally have been willing to be involved with research during his illness. But actually, these ethical barriers stop us from talking to one another. And that's one of the things we're really trying to change.

And you have changed. I mean, there's been great progress. And you should be very proud of that. Ruth, thank you very much. You're very welcome. It's been great to have you really great, really great to have you my privilege.

Well, that was an inspiring conversation we had with rethinking about how people can cope with such life changing moments. Yeah, she just seems to have taken that tragedy and that grief and then put it to use in such a positive way. I was so impressed.

Thank you very much indeed for joining us in This episode of talking to Titans. In the next episode we'll be speaking to Sasha Rosen, Neil, Dean of social and historical sciences.

For more information, please go to https://www.ucl.ac.uk/ucl-minds/titans. If you liked this episode, leave us a review in your podcast app, share it with your friends and tweet at UCL with the hashtag talking to Titans. The series was a Whistledown production.