Global Ped Hem Onc Chat with Nita Radhakrishnan #2 – Neil Ranasinghe

We’re excited to present the second episode of our series, “Global Ped HemOnc Chat with Nita Radhakrishnan,” brought to you by OncoDaily. This OncoDaily initiative is designed to spotlight research that addresses global disparities in the care of children fighting cancer and blood disorders.

In this episode, Neil Ranasinghe talks about his own experience with abandonment and addresses why some parents might want to stop their child’s treatment. He also provides advice for parents with children receiving cancer treatment, including tips on staying emotionally stable and where to find trustworthy information about pediatric cancer.

Neil Ranasinghe

Neil Ranasinghe is the parent of a child who was diagnosed with leukemia in 2003 at the age of four. Since then, Neil has actively contributed to several cancer charities, using his expertise as a Technical Author, his English degree, and his leadership skills. He is also a Senior Technical Author at Thomson Reuters.

Neil co-founded PORT, a group of parents that reviews documentation for pediatric oncology clinical trials, offering insights from a parent’s perspective. PORT has reviewed documentation for over 30 clinical trials.

Currently, Neil co-chairs the SIOP Global Health Education and Training Working Group, helping clinicians from low- and middle-income countries (LMICs) access educational and training resources to treat children with cancer.

Nita Radhakrishnan

Nita Radhakrishnan is an Associate Professor and Head of the Department of Pediatric Hematology-Oncology at the Post-Graduate Institute of Child Health, Noida, India. She serves as the honorary secretary of the Pediatric Hematology-Oncology Chapter of the Indian Academy of Paediatrics, the largest body of medical care providers for children with blood diseases and cancers in India.

She is the Co-Chair of the Partnerships Working Group of SIOP Global Health and Chair of the International Pediatric Association Program Area Working Group on Childhood Cancer. Dr. Radhakrishnan is on the Editorial Board of OncoDaily.

00:00 Introduction
1:41 What drives Mr. Ranasinghe?
2:48 Current activities
3:55 Experience of abandonment
6:01 Why parents want to stop their child’s treatment?
10:47 Advice for parents whom children receive treatment for cancer
13:32 How parents can stay emotionally stable during their child’s treatment?
15:44 Where parents can look for information about pediatric cancer treatment?

The Transcript of Global Ped Hem Onc Chat Episode 2

Nita Radhakrishnan: Hello everyone! I’m Nita Radhakrishnan, your host for Global Hem Onc Chat from MCO DA, and I welcome you all to today’s session. Today we have a very special guest, Neil Ranasinghe. Neil does not need any introduction for those of you who have been active in pediatric cancer research.

He is the parent of a childhood cancer survivor, and after going through that ordeal, he has used his experience for the benefit of millions of others around the globe. He’s been involved in a lot of cancer charities, a lot of cancer education programs, and he has contributed his expertise as a parent of a survivor to many educational activities across the globe.

He’s the co-founder of a group of parents called PORT that reviews documents for parents and patients when asked to join a pediatric oncology clinical trial. He has actively contributed to SIOP Global Health Education and Training working group, as well as to POINTE, a website that has educational content for healthcare professionals from low- and middle-income economies. Outside all these voluntary activities, he works at the London Stock Exchange. So welcome, Neil, to today’s session, and we’re very, very happy that you could join us today.

Neil Ranasinghe: Thank you. Thank you for that lovely introduction.

Nita Radhakrishnan: Hi Neil, so I would start with asking you what drives you to do all these voluntary activities that you do? What motivates you to do all of this?

Neil Ranasinghe: That’s a good question. As you say, my daughter had leukemia when she was very small. She graduated from university just last year, so our journey with her has gone very well. We’re very fortunate in where she is now and with hardly any late effects. I appreciate that the situation for me and my family in London is very different from a lot of families across the world when their child has cancer.

So I’m just trying to help and advocate for children with cancer in countries that don’t have universal healthcare, or they don’t have good healthcare, or the situation isn’t as good. I’m just trying to do my little bit to help other families in a similar situation.

Nita Radhakrishnan: Yes, wonderful. So what are the activities that you’re currently focusing on?

Neil Ranasinghe: In the UK, I’m still active in this group called PORT. Whenever there’s a pediatric oncology clinical trial, we get to review the patient information sheets before they’re approved by the government for use. There’s also an annual conference called the London Global Cancer Week, so I’m actively involved in that.

Within SIOP, I’m active in the SIOP Global Mapping program, which I was one of the core members in 2018. That’s very exciting now because the data is actually being used and requested across Latin America, and we’re collecting data across Asia as well. So this is a very exciting project to be part of.

Nita Radhakrishnan: Yeah, I think that’s the one data which will actually give us a lot of information on what are the gaps and services which are available across the different regions of the world. I recently saw a small article written by you on abandonment. I was pleasantly surprised to see someone from the UK write about it because abandonment is something that we face in countries like India as well as in other low- and middle-income countries. This is something which we struggle with on a day-to-day basis.

What has been your experience with abandonment when you find parents abandoning treatment in different regions? You’ve worked across the globe in certain projects, so what, according to you, is abandonment and why do people abandon treatment?

Neil Ranasinghe: That’s a really good question. I think in the UK, we’re lucky to have the National Health Service, so all the costs are paid for and the standard of healthcare is good. If a parent can’t take their child for treatment, then the government will intervene so that there’s no abandonment.

Abandonment isn’t a problem in the UK, but treatment abandonment is a massive problem across the world. This is where a child is diagnosed with cancer and either the child doesn’t start the treatment for cancer or the child doesn’t finish the treatment for cancer. In most cases, this has terrible consequences and usually means the child dies.

We know that this is very high in some parts of the world. In some places, it’s even as high as 40%. So 40% of the children are diagnosed, they get cancer, and for whatever reason, they don’t finish treatment. There’s lots of groups and people around the world trying to improve this problem. I know your hospital works very hard on this, so just trying to help and educate and help professionals and help families understand what’s going on.

Nita Radhakrishnan: Across the regions, financial reasons and financial toxicity of treatment are one of the reasons that parents do abandon treatment. But other than that, what are the other reasons that you have faced? Is it fear of cancer or fear of chemotherapy? What are the other reasons for which parents stop treatment?

Neil Ranasinghe: As you say, there are lots of different reasons, and those different reasons vary across the world. One of the big reasons is parents feel as though cancer is a death sentence. When the child gets cancer, they think the child’s going to die, and if they take the child to hospital or give them chemotherapy, it’s not really going to make any difference. In one, two, three years, the child’s going to die.

Also, we see for some families it’s very difficult. They’ve got a fairly healthy child who has been diagnosed with cancer but is not really sick, and then they start treatment, and they lose their hair, and because of the chemotherapy, they suddenly deteriorate. Then the parents think, “Well, my child was sort of okay a little while ago, but now I’m bringing them to this hospital and the situation is getting worse.”

I think education is important. For most types of childhood cancers, it is curable. We just need to spread that message. But there are lots of different reasons, and the word “abandonment” is discussed heavily in the pediatric oncology community because it sounds very accusatory, as though the parent has decided to abandon treatment. That isn’t the case at all.

Abandonment only means the treatment has stopped. We’re not placing any blame on the parents or anyone. It’s just often for financial reasons, and we hear stories of it taking 6, 8, 12 hours of travel for the parents to take the child to the hospital for an outpatient clinic. The parents have to take time off work, which they might not be permitted to do. They might not have the money for public transport, care, or accommodation.

The disease my daughter had was leukemia, and for girls, the treatment is for over two years. For boys, it’s over three years. Leukemia is the most common type of childhood cancer, so this means a lot of outpatient visits—literally years of outpatient visits. If the families are really struggling economically, then it’s a big problem. We have to try and help the families.

Nita Radhakrishnan: True. For many families, especially the families that we see from poor socioeconomic status, it’s a daily wage that is lost. They are not on salaried jobs, so when they come to the hospital, and if it’s a two-weekly visit, they often request to change the outpatient day to a Saturday just because they don’t want to lose wages. Some of them can afford it if they’re working in offices, but for daily wage earners, they’re actually losing wages for that particular day, and it is really sad.

When we have analyzed it, it’s not only financial toxicity; there’s a whole lot of myths surrounding, like you said, anxiety surrounding cancer. Or when the child initially deteriorates, they lose hope and run away. Children who lose hair are so emotionally traumatized they don’t want to continue treatment. There are so many aspects when you know it takes a whole village to kind of sit together with the family and handhold them through this process.

One of the things that has helped us in this journey is to get survivor parents to speak to the current parents. I’m sure you meet many parents on a regular basis. What advice do you give to parents? I’m sure in the UK, there are also many anxieties surrounding a diagnosis of cancer. What do you tell parents when they speak to you, parents of children who are actively undergoing treatment for cancer?

Neil Ranasinghe: The thing I say, which might not sound very helpful, but we found at the beginning—and this isn’t really related to abandonment, but this is related to treatment in general. As I say, my daughter was diagnosed with leukemia, and we were told she would be on treatment for about two and a quarter years.

At the beginning of treatment, the treatment is the hardest. There’s longer stays in hospital, considerably more chemotherapy, and a big adjustment the family are going through. To be told you’ve got two and a quarter years of that is very, very difficult. It’s really overwhelming. The thing I say to families—well, I say three things.

One is try and do it on almost a day-to-day basis. Try not to think of, “I’ve got two and a quarter more years, I’ve got 18 more months of this.” It’s really overwhelming, and it’s very difficult to imagine the end. You can’t see the end. So it’s a cliché, but try and take each day as it comes. “We’re going to get through this day, we’re going to get through this week, we’re going to get through this month,” and then you can slowly get towards the end.

The other thing I would say, and it really varies, and I know some families have it very, very difficult, is that we tried to live a fairly normal life And she still went to play group when she wasn’t very well and carried on with her activities. She still went to school, she still did a lot of activities. And she was lucky enough to learn how to swim while she was on treatment. Now, I know that can sound almost offensive to some families because I know it is very, very difficult for them, and they’re just in hospital and they’ve got a very, very sick child, so I appreciate that.

For those families, you have my sympathy, and I’m not saying go out and be active. But for us, what worked for us was trying to act as though things were normal and definitely not thinking about having two and a quarter years more of this treatment—just breaking it down by day or by week.

Nita Radhakrishnan: Breaking it down by day or by week. True, it must be very, very tough. What do you advise parents? I feel at times they are so emotionally distraught in this whole process, and the time that we get to spend with the parent is just a few minutes in our outpatient clinics or in the ward. So, as a parent, how would you advise other parents on how they should go through this for their own emotional health?”

Neil Ranasinghe: Yeah, that’s… I could speak to you for hours about this. I think it’s just trying to get support from people where you can get support, but sometimes that’s not possible or your family might be a long way away. But I think, without getting too deep, I think it’s just really acknowledging those emotions.

So if a parent is really struggling or finding it really hard, then I think you just have to really sort of appreciate that. ‘I am fine’—it’s very hard. ‘I am really struggling,’ and it’s okay to feel like that. It’s not a case of ‘Oh, just get on with it.’ There’s other families that are in a worse situation or ‘My son or daughter is really ill; they need me to be strong.’

I think they do need you to be strong, but it’s okay to really appreciate and recognize that it is very tough for parents as well, and it plays emotionally. It’s very, very, very difficult. So, I haven’t really got much advice there apart from don’t sort of hide from those feelings.

Nita Radhakrishnan: I’m almost feeling bad asking you the question because, you know, it brings back probably, you know, that struggle that you would have gone through. But thank you so much for answering that because I often feel that parents are never being discussed in the whole process; it’s just the child’s emotional security, the child’s physical health that is being always discussed. So parents also should have a self-help group or some supportive care network should be around them as well.

Thank you so much. And one final question: there’s so much information out there on social media nowadays; patients walk in with a diagnosis, with information at their fingertips in their phones, as to what all treatment is going to be given.

So, and there’s so much false information also out on social media. So, as a new parent, who has a child with a newly diagnosed malignancy, how would you advise the parents out there as to where should they look for information? How would you know whether it’s fake information or not?

Neil Ranasinghe: This is a very difficult one. We see, and you probably see, stuff that says Western medicine or chemotherapy is bad, so avoid it, and try this diet; then you can cure cancer. And we see that. We see that regularly, and it has terrible consequences.

So, my advice, and our advice, is to get information from the really big organizations. I know there’s national organizations in India, and I know you’re part of some of these national groups. And there’s national organizations across the whole world, and I would go to those ones. Or if you can find a really, really big national charity, then get the information from there as well.

But yeah, just Twitter or other places or just opinions, then yeah, try and avoid that. It’s wrong. I wouldn’t say it’s wrong all the time, but there’s a high likelihood it will be wrong. And also, it can be very scary as well, so it can be really harmful.

But that’s a good question because I think as adults, a lot of times when we’re not very well, I think the first thing we do is we go to the internet and have a look and see what the problem is. But I think when it’s our children with cancer, and we do have detail, we have worked out how to treat children with cancer, we have good methodology, and there’s been lots of research. So, the doctors know what they’re doing.

Trust the doctors and get the information from either a national society or a really, really reputable, well-known national charity.

Nita Radhakrishnan: Thank you very much, Neil. So, we heard from Neil that he is a parent of a childhood cancer survivor. He’s explained his journey to us, telling us how to stick to the treatment and not to stop treatment in between, and however difficult it may be, just take one day at a time.

Get your information right, speak to self-help groups, speak to others who are undergoing treatment, and speak to your treating team, which would help you get through the treatment as best as possible.

Thank you, Neil, for joining us today. And from all the listeners of OncoDaily, I would like to thank you for spending time with us from a busy day at work. We could see movement behind you, and we look forward to chatting with you again on another topic that’s close to your heart. Thank you.

Neil Ranasinghe: Fabulous! Great, thank you very much. It’s been an absolute pleasure. Thank you.

Previous episodes of Global Ped Hem Onc Chat

Episode 1: Asya Agulnik