SCI Care: What Really Matters
SCI Care: What Really Matters
Knowledge Sharing is Caring: Improving quality of life for people with spina bifida
In this episode, released to coincide with World Spina Bifida Day, host Anders Tennby (Wellspect) explores the challenges and opportunities in improving life quality for those with spina bifida. Joined by experts Hanna Gabrielsson from Sweden and Pierre Mertens from Belgium, the discussion delves into the complexities of this congenital disorder. Gabrielsson, a registered nurse with a thesis on adults with spina bifida, explains the condition's medical aspects and the challenges individuals face, including the need for consistent self-care and the impact of cognitive impairments. Mertens, president of Child-Help International and father to a daughter with spina bifida, brings a personal perspective, highlighting global disparities in care and support.
Resources Mentioned
- Guidelines for the Care of People with Spina Bifida (spinabifidaassociation.org)
- International Federation for Spina Bifida and Hydrocephalus (ifglobal.org)
- NOSCOC Special Interest Group on Spina Bifida (noscos.org)
- Child-Help International (www.child-help.international)
- MMCUP (Swedish national quality register for spina bifida) (mmcup.se)
Note on Prevalence Rates: During the podcast, there was a discussion about the prevalence of spina bifida. It's important to clarify that prevalence rates can vary significantly between regions and depending on whether prenatal diagnoses are included. In Sweden, for example, the estimated prevalence before prenatal screening is approximately 5 per 10,000, but the actual number of children born with spina bifida is considerably lower, at about 5-10 children per year (or 1 per 100,000 newborns). Globally, reliable incidence studies are lacking, especially in the Global South where many cases may not reach hospitals. Reported figures vary widely, from as high as 14 neural tube defects per 1,000 births in some areas to as low as 1 in 10,000 in others. This wi
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Welcome to this episode of Spinal Core Injury Care what Really Matters podcast. The title today is Sharing is Caring Improving Quality of Life for People with Spina Bifida. My name is Anders Tenby and I am your host for this episode, and while I'm not hosting a podcast, I am heading a research and development project management department that's quite a long word, isn't it? At WellSpect, and WellSpect is a company where we develop future products within the clinical areas of urology and atrology.
Speaker 1:So we're going to touch upon spina bifida today, which is a part of the people with spinal cord injuries. It looks very different around the globe and today we have two experts representing two completely maybe we should say different realities, but I think there are also similarities because we have talked in advance. I know there are similarities and we are happy to get some light on this group. We know that knowledge opens up the doors for a better life, so if we can take the good learnings from both the Global South and Vestalize Care in the North, we can improve life for many individuals living with the spina bifida. So our guest today is Hanna Gabrielsson. Welcome, hanna.
Speaker 2:Thank you for inviting me and thank you for focusing on this important topic. I'm a registered nurse and a clinical lecturer from the Swedish Red Cross University in Sweden and I wrote a thesis on this topic Adults with Spina Bifida in 2020.
Speaker 1:Interesting. Very good, I think that you have a lot of great experiences. And then from Belgium we have, from the ISKOS network in Belgium, pierre Mertens.
Speaker 3:My biggest title I'm the father of Lisha. It's a wonderful girl with spina bifida and hydrocephalus, so that's my background. I'm a psychotherapist and contemporary artist from profession, but a lot went wrong at birth. So I started a support group in Belgium and then became active in the international Spina Bifida world, and that's why I'm now involved with ChildTalent, which is an organization working for Spina Bifida in the Global.
Speaker 1:South Very good and also interesting, with your both personal experience and experience from a big part of the world. Very warm welcome to both of you. So let's kick it off then Spina bifida. Could you explain a little bit, Hanna, what it is, why it happens and how it affects the people living with it?
Speaker 2:Yes, First I should say something about my clinical background as a registered nurse and a coordinator in the Spina bifida team at the Spinalis Outpatient Clinic at Alleres Rehab Station, Stockholm, and this clinic specializes at spinal cord disorders and since the last 20 years we've been responsible for follow-ups for healthcare related to the spinal cord disorder for adults with spina bifida in the greater Stockholm area.
Speaker 2:This is a unique setup for follow-up for adults with spina bifida in Sweden and partly also internationally, since we hold a rather big cohort of adults under the same roof. Spina bifida it's a general term and it includes a range of malformations. It is a congenital disorder evolving early in the pregnancy when the neural tube should close, resulting in a congenital spinal neural tube defect. Spina bifida is often used synonymously with myelomeningocele and involving multiple body systems.
Speaker 1:And you also have that abbreviation for myelomeningocele, it's MMC.
Speaker 2:Yes exactly, and spina bifida have by some been considered to be the most complex congenital defect compatible with life. It is a complex disorder. The failure of closure of the neural tube causes a variation of degree in injury, often including hydrocephalus. Varying kinds of neurological loss is common and most of the individuals born with spina bifida reach adulthood today, and this is due to improved medical and surgical treatment. However, a risk for early death remains throughout life, as well as risks for secondary conditions for many systems of the body.
Speaker 2:So the impaired neurology has consequences for motor and sensory functions, including urinary tract and bowel functions, and all are to some degree preventable secondary conditions with a high impact on health outcome. And many persons with spina bifida also have impaired cognitive ability, with significant executive difficulties and executive functions is the ability to shift attention properly, difficulties with executive functions, which complicates contact with healthcare and society in general, and this becomes more evident in adulthood when demands increases. Of course, those cognitive impairments can be compensated for with appropriate strategies. So persons with spina bifida are not one homogeneous group and that's important to acknowledge, I think, because they represent a wide range of physical disabilities and cognitive outcomes, but still the experience of growing up in a specific society with the congenital conditions constitute a common platform.
Speaker 1:When you talk about this cognitive impairments is that a given or is it? Some have more, some have less and some have nothing of that?
Speaker 2:Yes, it's a very wide variety. It's also more common by those who have hydrocephalus and Chiari 2 malformation. You can also find it with those who doesn't have that and it's a big variation.
Speaker 1:I think that's also good to, let's say, put spotlight on, let's say, multiple disorders that could come together with this. Yes, thank you, hanna for that. And just switching over to you, pierre, since you maybe not work in a complete different sense compared to Hanna, but you have a lot of different experiences. So what are your insights about the current situation in the Global South and maybe also specifically related to spina bifida?
Speaker 3:Yeah, the first thing I would like to say is that when you name all the complications and problems you see in adults with spina bifida like Hanna did very well and I think it's very good to name them and to did very well and I think it's very good to name them and to acknowledge them, especially the psychological problems, sociological problems. So I think it's very important to take them seriously and to look for solutions, and that what Anna said as well is that you can, there are a lot of techniques and possibilities to face them, to counter them, to work with them, and the knowledge from Sweden is, in that way, very important, because in many other countries there's nothing for the adults. So they just arrive after a rather good service in the pediatrics, the pediatric services. They arrive in adulthood, they're just out of puberty, and then they're fighting with their parents who are their caregivers, and then there is nothing. And then you see that you see in these young people, suddenly they are not taking care of themselves or not enough, and they have complications, medical complications that could be avoided, et cetera, et cetera, et cetera. So I'm absolutely not ignoring all the problems there are, but there is a problem of.
Speaker 3:There was once a neurosurgeon who told me spina bifida has a bad PR. The view on spina bifida is so negative that people do not believe in the future of these children, and this is a problem we see worldwide. And if you ask about the situation in the world, I think that in the global north, 90% and even more is aborted. And why is it aborted? Why are they aborting these children? Well, because they don't believe in the future, because they don't have a good PR. So by saying there is this and this, it looks like there is a monster. Probably I'm the person who knows the most people with spina bifida in the world. I think I know thousands of them because already 50 years of my life, this has inspired and dominated my full life and I've seen wonderful people, people who became doctors, lawyers, mothers who have children, who really developed a full life. The hope and the belief in these children is extremely important Because if we are aborting 90% of these children in the global north, what happens in the global south, where there's no prenatal detection, where, for instance, muslims will never abort? So then it becomes really the disability of the south and one of my biggest concern is how to capture all the knowledge we developed the last 50 years on spina bifida and hydrocephalus, how to keep it and how to capture it, and I think your work you're doing, hannah, to writing a paper on it and to do research on it, is very important because it will be lost.
Speaker 3:Many people in the North think the problem is solved. Oh, spina bifida is solved. We have prevention and we have prenatal and, which is not true. When we got the child with spina bifida after a while, in the beginning everything went wrong, but after a while we knew what we could do. Then we said let's do normal. But normality is not the goal of such. It's a double thing. Do normal it means let's see this as a child, a child that maybe likes music, that maybe is good in drawing, has his talents, invest in the good. But normality on such is not the goal.
Speaker 1:If you want to correct all the disabilities that a person with spina bifida has, you will never, never go out of the hospital, my experience from, let's say, maybe science in general or in worldwide, whatever we call it we're very much focusing on solving problems instead of, as you say now, pierre, that we also should also focus on emphasizing all the good things that really are happening. And as you see so and I think this is a little bit of a science problem as such that we are trying to solve things instead of building other things that are working. So I think you have a great point here. False hope is absolutely wrong.
Speaker 3:But not giving hope at all is a big problem. I always say when I'm talking in Africa but also in Asia when you kill the hope in parents, you kill the child. I think Hannah will agree with me that the registration is very difficult and it's even more difficult with the prenatal selection. When I was young and I had a young child with spina bifida, we set two in 1,000 live births. That was the average that was always set Because of prevention, because of a lot of means. Hannah is thinking about a half in thousand, I think five in ten thousand.
Speaker 2:Yes.
Speaker 3:But in the north. There is a rather recent research in the north of Ethiopia where they saw 14 in thousand. The only publication I found was 350,000 newborns with spina bifida urethra defects a year worldwide and I think even that's an underestimation.
Speaker 1:Yeah, it seems to be so. Hanna, when you wrote your thesis and maybe not writing, but digging into the facts and all the experience have you noticed any specific challenges within this area?
Speaker 2:There are many challenges and Pierre mentioned some of them, like we need to preserve the knowledge that we have, but we also need to extend the knowledge, and here the situation is that the persons who are adults are getting more and more, while the children are getting less. So here at least, there is an increasing need for knowledge in the adult population. But also aging with spina bifida what's happening and how can we make sure they get the proper follow-up? And the important thing that Pierre also mentioned, I would like to highlight the participation in everyday life and in society. Like the participation in everyday life and in society, that's a big issue here, because the medical knowledge has improved, so the persons get old even. But the psychosocial aspects of getting into the labor market, the economical aspects and such, are less developed for this group as other persons with disabilities.
Speaker 1:So what to do then? How to improve that situation? Do you have any spontaneous thoughts?
Speaker 2:Information, definitely Raising awareness, and also, as we did in my research, we involved the persons themselves in knowledge building about their own situations, and that put lights on that, even though you might have cognitive impairments, you still have many abilities and a lot of knowledge that we need to take care of and acknowledge.
Speaker 1:It's interesting to hear it's about information. It's about understanding, acknowledge. It's interesting to hear it's about information. It's about understanding, but also be aware that it's not zero or one. There are great potentials in this group, but maybe there are also a need for acceptance and to be able to bring this group into the, let's say, society.
Speaker 2:And also in terms of healthcare, it's often the person themselves in the adult population that gets sort of the coordinator of care, because the different systems doesn't really talk to each other. No, and since they have multiple needs from different specialties within health care, this is challenging. It would be for anyone.
Speaker 1:Pierre, I know you have a personal story related to this. You mentioned it before. I think it's great, because this is where it all started for you. Please share with us your own personal story.
Speaker 3:I think what Hanna says is that how important it is to have a coordinating person, and that's really what we missed a lot in Belgium when we and our children my child was born yeah, how it was. So the doctor said at least the name was Licia that she will not become one day old, and then not one week old and then not one month old. So we were from the beginning said that she will die and there is no hope for her, and that children with spina bifida have no chance to live.
Speaker 1:When was this? What year was this approximately?
Speaker 3:It's more than 40 years ago and there was no spina bifida teams at that time. In Belgium there was a beginning pediatrician in one of the universities who gave a little bit attention to it, but there was no financial situation for a university to take care of these children. After three months we just got our child at home and with the message when she's vomiting all the time and her eyes are turning around, you can bring them in a hospital to die. But I tell this because this is still the situation in 80% of these children in the world. This is still what's happening in the global south and that's why I'm fighting so much to get a more positive image of these children. Because if you don't treat these children and of the of the negative pr of child, of spina bifida, is because of the past.
Speaker 3:70 years ago, a parent, not a doctor, a parent found a solution for the hydrocephalus, for the waterhead, let's say medical plumbing. So they just put a tube and they divide the, the csf, the water of the brain, to the stomach. This opened the door for the life, and now, these days, the life of a person, the future life of a person with spina bifida, has never been as good as now. So the adults and the elderly people in Sweden, where Hannah is speaking about, didn't get this high tech we have now in imaging, the knowledge on content management et cetera. So they have also the failure of a system that had to learn about spina bifida. So in a way, what we could offer now to people with spina bifida is much better than what we could offer 40 years ago.
Speaker 3:So, anyways, our child came home and we thought she would die and we went to another doctor and said why is she not operated on? Because in other countries they were doing it. And then we started to do the surgery and it went better. She went to normal school and she had a more complicated but a beautiful, wonderful life. So that's my background. That's why I started with a support group in Belgium. I worked very much with the Swedish people and with people all over the world. I used to be the president of the International Federation for 18 years just to bring the knowledge to the people, because knowledge is the key for a better life. An informed patient, an informed person, is so important in the way you can cope with a disability.
Speaker 1:It's both sad but also a beautiful story, I would say. As I understood from you, she has developed a lot of strength, but you as a parent, and you and your wife coming home with this, let's say, message of there is no future, she will die, how did you cope with that? How did you take on that task and that challenge?
Speaker 3:Well, here all rewards go to my wife. You know, when they say your child will die, then your life is collapsing completely. Of course it was when I was first born, so my wife never believed the doctor. But I was like, yeah, that's what the doctor said, that's the science. They said the oldest I ever seen was nine months. And if you operate on her you are selfish, you are doing it for yourself and you are putting your child in pain. So I accepted that. But I was mourning. I was mourning for the child I was expecting my wife kept on looking for and she came with articles about spina bifida in a magazine.
Speaker 3:Look, this is a child. It's in a wheelchair, but he goes to school. Now the doctor said, yes, but this is not the case, your case. And then he showed radiography XR. He said you see, she has no brain. What do I know when I see such a gray photo? I see only the skull of a death of my child. So there's no brain at all. But she was born, she went to normal school.
Speaker 3:The misinformation on spina bifida is still a very, very big problem worldwide. And what's interesting is now, and already in 99, when I was still president of the International Federation for Spina Bifida, we invited an American surgeon who did fetal surgery. In a way, they closed the back during the pregnancy. We see in the centers where they offer this surgery that the majority goes on with the pregnancy. So what does it mean? If you give hope to parents, they go for it. So the way you counsel is very important in the decision-making of the parents. If they would give me the information during pregnancy when I got a birth for my daughter, I would probably do the same. I would probably go through termination of pregnancy. Now I've lived with her and it was a wonderful experience and it enriched my life in so many ways. So no, I cannot accept it.
Speaker 1:And Hanna. When you listen to Pierre's story here, do you have any reflections on that? Are there similarities you can recognize?
Speaker 2:Well, yes, unfortunately it is. It's just sad to hear that you from the healthcare system hear this.
Speaker 1:And also lack of knowledge and like an attitude problem yeah, putting a bad attitude into the mind of a parent like, so yes, and unfortunately, a lot of persons with spina bifida has experienced bad experiences from health care.
Speaker 2:That's here too, like in sweden. We need to work on that. If I can just say something about the prenatal diagnosis and abortions In my studies, one of the participants highlighted the issue like why don't we get to say anything in this issue? Like why doesn't anyone ask us, instead of letting the doctors sort of give you advice for abortion?
Speaker 1:I think again we come back to this science-focused way of thinking. Maybe I don't know- Like that's the reality.
Speaker 2:Those living with spina bifida are living in a reality where the society reflects that they are not wanted.
Speaker 3:If I can second this, anna, we had a very bad experience during COVID and I don't know how it has been in your group of adults. Certainly they were completely isolated. They couldn't go to the pub, they couldn't go to their activities. I don't know, maybe it's too difficult issue, but in Belgium you can ask for euthanasia if you feel that your life is not worth living. We know in Belgium for three adults who got euthanasia and it was not because of spina bifida, it was because of depression and being completely alone and isolated. Why I'm telling this is because not being part of something is for everybody. Also, a person without spina bifida is a desperate situation. It is so people with spina bifida tell to me it's not my disability that hurts me, but it's not a welcoming society that hurts me.
Speaker 1:That's basic, isn't it?
Speaker 3:In Africa they say we don't want inclusion. They have another word and I like it very much, and that's belonging. It's a big difference.
Speaker 2:And also I need to say that this is specific for the Stockholm region. So in the rest of Sweden, it looks very different.
Speaker 1:I can't say it's working fine all over Sweden, because that's not the case. Holding that, then, what would be required to make that happen? Is it about financing? Who should take the step to start those kind of coordination centers? What is the obstacle?
Speaker 3:belonging is a big thing. So for me in my story the first year, there was nothing to go all different specialists and without any coordination why doesn't that exist, for instance, in the rest of Europe, as you said?
Speaker 3:The biggest problem is because many universities have started spina bifida teams and that was good, because there is a psychologist, there is a social worker, there is a nurse and I think the function of the nurse is extremely important because she has time. A surgeon has no time to talk to the parents, etc. So this coordinated care is extremely important. But the transition from child to adulthood is often a very big problem. It doesn't start at 16. It started a year of three, learning a child to wash her the hands himself or herself. There it start transition and so it is. It is coaching the parents to be good, coach in being persons who can cope with with the complexity of their disability yeah and hannah, do you have an idea, since you said, yeah, this is.
Speaker 1:We have this in sweden, in stockholm, but not in the rest of the. Why doesn't that exist in more cities or places in sweden or in?
Speaker 2:I think there are several reasons for it, but if we should focus on solutions, perhaps the spinal cord units could be one of the solutions. They have a spinal cord defect which have similarities, lots of physical similarities, to the spinal cord injuries and also the spinal cord centers often holds many specialties within healthcare under the same roof. In terms of the swedish situation, yeah, it looks very different the different spinal cord units, if they have a structured follow-up for persons with spinal bifida or not. We also have a follow-up program in Sweden.
Speaker 2:It's called MMC-UP, and there are more children in that follow-up program than adults, and one of the reasons for it is that we don't really know where the adults get their follow-up Do they get a follow-up or not? And it could be their local health central, like word central, or in the best case scenario, could be a urologist perhaps, who follows this one person or two persons, because here in sweden it's considered to be a rare condition and with the consequences of rare conditions, the knowledge goes down because you don't meet as many patients with this condition and when you do, it could be hard to acknowledge all the wide range of problems that might exist.
Speaker 2:For example, can say that they do the clean intermittent catheterization regularly, but it doesn't necessarily mean that they do.
Speaker 3:So in Belgium, when we are fighting for coordinated care, we achieved that also. Adults are in the same hospital having coordinated care. So we developed it for children but also immediately developed it also for adults. So they remain in the same hospital for the same coordinated care. They got in the pediatrics and I think this is the most simple situation if it's a financial issue. But we know that good coordinated care is cost reduction.
Speaker 3:If you talk to parents and you listen to the child or to the adult, you can avoid a lot of medical imaging. You can avoid even surgery. By coaching you can do a lot we have to do in our healthcare system less medical and more psychological, more sociological, more talking, more listening, more thinking together. This is extremely, extremely important and I think this is just to widen up the pediatrics and have the same for the adults in the same hospital. They are used to going there for their childhood. I think that's the most simple way, but it doesn't happen and I think what Hannah said is a good idea and that's also the reason why I joined ISKOS is that they just end there. I see that in many countries in the Netherlands, because of the prenatal screening, I think that 10 spina bifida teams there remain to five, and now the adults all go to the spinal cord injury rehabilitation centers.
Speaker 1:Now you mentioned Belgium, pierre, and I also know you have experience from Global South. You mentioned here earlier, when we talked, what you do in that area. For instance, we've talked about we focus on achieving more by doing less, but doing it better. Could you give some examples of what you have done there in those areas?
Speaker 3:yeah, what we learned from the from the experts, to be honest, mostly from the global north is that you have to start the content management at birth. In most countries they start at two years, because then a baby is wet. But a baby with spina bifida is dangerous wet. It's a bit complex, but if you are not starting the continence management at birth, there is already 40% of children at the age of one who have kidney damage. So it's just for medical reason you have to start at birth.
Speaker 3:This is a complete shift of mind because it means that you depend on this mother to do this catheterization five times a day when it's a dangerous bladder with oxybutylin, with the medication that relaxes the bladder. That is quite a challenge for a baby who's wet anyway. So you need to educate that mother. This is not to get your child right, this is to get to preserve the kidneys. This knowledge is not there and it has to be implemented. So we in Belgium I know in Sweden as well they refund very expensive catheters, I think five a day, and they cost around between one and two euro each. I call that a roll source.
Speaker 3:It is yeah it is Well, it is clean, intermittent categorization. It is not sterile categorization. It should not be sterile. We are using, we buy them in China with 10,000 each. We are using categorization and that costs us not 10 euro cent, and we learn the parents how to clean it and how to use it for a month. Can you imagine the difference in price? And why is this? Why is this? This is because when it's too expensive, people are not doing it.
Speaker 3:Healthcare is, for me, like an ice cream. It should be from good taste, it should be of good quality, it should be not too far from the patient. I'm not going to Brussels to buy my ice cream. I will not pay 100,000 euros for an ice cream either. So like an ice cream, if we would look at healthcare like an ice cream. If I want to sell my ice cream, it has to be good quality, it has to be affordable and it has to be reachable, accessible.
Speaker 3:And that is what you've implemented, then in some areas, yeah, and that's what we try to do in Africa. That's what we try to do and we are rather successful and, to be honest, we have no more infections than we have in Europe.
Speaker 1:Yeah, that's interesting.
Speaker 2:Do you have any references on that?
Speaker 3:We are now doing a PhD on the barriers between, because we see a lot of barriers, as you have the fight to get the adults to do the categorization, and now we have it. Of course we have the same problems there, but it is only an informed and motivated mother and an informed child, and when the child can do it, the child can go to school. When they cannot do the categorization themselves, because then you have to do it five times a day and the difference between wet and not wet is the difference between belonging or not belong. When you smell and you're wet, you are excluded. It's that simple. But this is just one example it's.
Speaker 2:It's a really good example and I mean puts the light on how it also affects possibilities for participation.
Speaker 3:For instance, we see in Europe I don't know how it is in Sweden a lot of adults and children with resistance on antibiotics, and that's because the doctors see an infection, buff antibiotics Exactly.
Speaker 2:The doctors are really aware. Here I shouldn't say anything else. They try to avoid it, of course, but still they get infections a lot of times.
Speaker 3:I'm not doing it myself, but I did with my experts. I organized a confidence management training in Ethiopia and there were two children who had really the urine was like milk and the pediatrician who was with me said no antibiotics, no laboratory, not at all, just drinking more and doing one catalyzation more a day. Two days later it was water like my glass of water. We have to rethink our care.
Speaker 1:I mean, we are touching upon many great things here, as I see the good examples, the progress, as I hear, seems to be very positive. Still, though, we should not relax. There are more things to do. So, Hanna, more as a little bit of a summary up, If you had the possibility to be the wizard or the magic you had a magic wizard what would you like to stress or change or improve when it comes to improving life for people living with the spina bifida?
Speaker 2:well, as I mentioned earlier, the situation here is that the medical science has improved so much so they get old, but still there's lack of independence and participation in society.
Speaker 2:So if I could widen up the quite narrow labor market and also give them proper support in their everyday life and by proper support I mean not that persons should do things instead of the person with spina bifida, but they might need, like a coach or someone you know, someone making sure that things get done. I've talked to so many parents of now adult children and the parents are still very concerned Like what will happen with my child, my adult child, when I don't exist anymore Because there is not sufficient support in society, society. So that's where we need to put our efforts now, I think. And just one more thing is that future generations of older adults with spina bifida may need even more attention because we see now that they at a younger age have a more complex outcome. So, and you know, they will live into adulthood and older ages, so they will need more support this shouldn't come as a surprise no, it's, it's already possible to plan for.
Speaker 1:Indeed, you have the same capability now, pierre, that you could wish or say what you would like to put your focus on, or that we should focus on for what's going. What would you like to, let's say, change or improve?
Speaker 3:Yeah, the first thing is that there's two medical approaches on spina bifida and ID kefals, and I think a lot of things can be improved by seeing the person as a whole as a holistic, in a holistic way, with psychology, with the parents, with the environment. I'm happy that Hannah mentioned labor. I think going to work is being part, is belonging to, so I think this is very, very important and I think that also in children, but certainly also in adults, a lot of the psychological problems are wrongly translated into medical problems. So this is very important to widening up on all life skills and sociological problems. So that's one I would like to and I'm working on it to create a knowledge center, translating what we know into what is really needed.
Speaker 3:We are doing a lot of useless investigations, a lot of useless surgeries, a lot of useless therapies. Invest in the talents more than in the disabilities. As I said before, if you want to correct everything which is wrong on a person with spina bifida, you will never go out of the hospital. So normality is not a goal. Keep them in the family, keep them in the normal school, close to their house. Do everything to make that happen. So we need to capture all this knowledge because it's there and it will disappear if we don't do it.
Speaker 2:Yeah, that's really good, and I should mention too that we have started a special interest group on spina bifida within noscos, the nordic version of iscos. Hopefully it can evolve so great.
Speaker 1:I mean, I really like this, this approach both of you are bringing up, putting the person into focus instead. I would try just to sum up. I think we could sit here for a couple of more hours. It it's both a very interesting area. It's also an area where we all have a lot of feelings within, but I've noted some things that stuck to my mind in a way.
Speaker 1:I'm not, as you know, a doctor or a nurse or whatever. My knowledge about this is a bit less than yours. So what I hear here is that try to focus on the person and the quality of life, and I also like your quote here, pia, that normality is not the goal as such. It's really to look at those persons and their capabilities and see the possibilities. I think that is one thing that stuck to my mind in a anyway.
Speaker 1:It seems also like communication, information and PR show in good cases that put out the hope for the future. There is a great future for all these people, and we should talk more about that. Instead of focusing on the problems, focus on the possibilities. I mean, that's also a good general rule in life. There was a quite specific thing that I think was interesting that you mentioned, hanna, that spinal cord units could include persons with spinal bifida in some kind of follow-up programs, but in more focus on the latter part of life than in the early part of life. So that is also one thing that came to mind. Anything else you would like to add as a final word?
Speaker 3:Well, it really becomes the disability of the South, of the global South, which is really probably poverty is the biggest disability, but also stigma and so on. So I think North and South have to work so much together. It's a call for solidarity.
Speaker 1:Very good. So we take that with us and thank you, anna. Thank you, pierre, for sharing your insights and stories from the two different parts of the world, but with one common theme Spina Bifida. It's been a pleasure for me talking to you and I'm also confident that the listeners have got some great knowledge to continue building a better life for people with Spina Bifida. I wish you all the best in your tenures and thanks again, and hopefully we will hear from each other soon again. Bye-bye.
Speaker 2:Thank you Bye.
Speaker 3:Bye-bye, thank you.