PREVENTING EPILEPSY DEATHS - Jane Hanna OBE Discusses Sudden and Unexpected Deaths

Hundreds of deaths from epilepsy could be prevented every year if the condition was managed properly - according to the founder of a British charity.

In the UK, at least 1,000 people with epilepsy die each year.  In this powerful and informative podcast, journalist Angela Walker sits down with Jane Hanna OBE from SUDEP Action, who says many of these deaths could be prevented if changes were made in by the NHS,  in local healthcare management and if care for the the condition was properly funded  by the government.

Having lost her partner to sudden death in 1990, Jane is passionate about preventing such tragedies and shedding light on the often under-reported issue of sudden unexpected death in epilepsy .

Jane shares her personal experience and reveals that every week, around 21 families face the same devastating loss. SUDEP occurs when an individual diagnosed with epilepsy or experiencing seizure-related episodes suddenly passes away, usually during sleep, with no prior warning signs. Angela and Jane delve deeper into the risk factors associated with SUDEP and discuss the importance of raising awareness among medical professionals and the public.

The discussion also explores the challenges faced by the medical community in managing epilepsy cases and calls for a change in protocols to prioritise early diagnosis and intervention. Jane explains about the SUDEP app which can help patients and medics manage the condition better.

The podcast delves into the alarming rise in maternal deaths related to epilepsy and discusses the potential link with certain antiseizure medications. Jane highlights the importance of specialized communication and counselling for pregnant women with epilepsy,.

Join Angela Walker and Jane Hanna as they bring this critical issue to the forefront, sharing inspiring stories and insights from individuals and families impacted by epilepsy. Through awareness, understanding, and collaborative efforts, they believe that many of these heart-wrenching deaths can be prevented, paving the way for a safer future for those living with epilepsy.


#EpilepsyAwareness #SUDEPAction #PreventEpilepsyDeaths #HealthcareChange #EpilepsyManagement #RaisingAwareness #EpilepsyPodcast #MedicalCommunity #EarlyDiagnosis #SUDEPApp #MaternalHealth #PregnancyAndEpilepsy #CollaborativeEfforts #SaferFuture

Transcript

Angela Walker: 0:07

At least 1,000 people in the UK with epilepsy die every year, many of them young people. Half of them die suddenly and unexpectedly and no other cause can be found. My guest today says many of these deaths could and should be prevented. I'm journalist, angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guest today founded a charity after the sudden death of her partner in 1990. She was determined to reduce the number of deaths from epilepsy. Her name is Jane Hanna. Jane, thank you for joining me, thank you, thank you for this opportunity, angie, no problem at all. It's great to talk to you. We've all heard of epilepsy, but sudden, unexpected death in epilepsy isn't something we hear about very often. Can you tell us about that?

Jane Hanna OBE: 1:03

Yes, Sadly, I have personal experience of it but you know every week there are at least 21 families who share this experience.

Jane Hanna OBE: 1:14

It's really where someone who has been diagnosed with epilepsy or has experienced sort of seizure related episodes which are subsequently diagnosed as epilepsy, die out of the blue.

Jane Hanna OBE: 1:32

Usually this happens at night. Usually the person's being completely appears very well sort of the day before or in the lead up to the death but they die suddenly and it's obviously a complete and utter devastating shock. I think any parent will know the fear of a caught death and in a sense the epilepsy related deaths, the Sudap deaths, are like that in the sense of just that traumatic suddenness of the person no longer sort of there. The Sudap which has been worked on for many years now, that will be put down, should be put down sort of where there is an investigation after the death which essentially rules out other causes, so usually will rule out any cardiac related cause. Essentially it's where the post mortem comes back and the person has really just had epilepsy and quite often there will have been some seizures, maybe one in the year before or maybe many more in the lead up to the death, and that's when the death will be put down as sudden, unexpected death and epilepsy.

Angela Walker: 3:04

When we say people are dying in the night, do you mean that they would have seizure in the night and then die as a result of that, or are they literally passing away in their sleep?

Jane Hanna OBE: 3:18

Well, really, it is a passing away in their sleep and the person who died will not have been aware, and that's really important for families to know.

Jane Hanna OBE: 3:31

There has been a big study done across the world where these deaths have been witnessed, sort of on videotelometry units in hospitals, and so what we know is that there is a cardiac respiratory mechanism which leads sort of up to the death. The deaths are associated with seizures. So, yes, the deaths are linked to seizures, but it does not need to actually. You don't need to have actually seen, in a way, the evidence of a seizure. You don't need to have the physical markers of the seizure necessarily, because we also know, for example, from these videotelometry units, that sometimes people have silent seizures and the recordings have been able to pick those up. So, for example, someone who has a type of seizure generalized chronic seizure someone who will have had one of those seizures in the 12 months before the death, will be 27 times more at risk of sudden unexpected death and epilepsy. So there's this strong association with seizures, but many of these deaths are unwitnessed.

Angela Walker: 4:57

One minute we'll talk about preventative measures that people with epilepsy can and should be taking and some guidance for that. But first of all, I mean you set up SUDEP Action. It was by a different name then, wasn't it? But following your own loss, would you tell us about that, jane?

Jane Hanna OBE: 5:19

Yeah, my first partner, alan, was a young lawyer. He was a keen sportsman and in the seven months before he died his first episode was actually he was driving his car down the A34 to Winchester and he was triggered by some flashing the trees sunlight in the trees and that was his first episode and his car just flipped over because he actually had a seizure and he ended up in A&E and after that he had four seizures in total. He came out of the accident unscathed actually, but he did go on to have these four seizures and on the last seizure he died in the night. But really, when he went to the doctors at the time, when he saw the GP and then eventually saw a specialist, and it was very much, you know, this was something not to be worried about at all. No risks were mentioned and really he was discharged, actually while he was still not seizure free from the specialist.

Jane Hanna OBE: 6:35

However, we had learnt to live, I suppose, with okay, this is okay. But then when he died, it was a total, utter, devastating sort of shock and when I rang, I rang, you know organisations, I tried to find out you know sort of how could this have happened? And I was actually told that people couldn't die from epilepsy. And that was the beginning of my journey, really, because I realised that these deaths weren't visible at all. There was no recognition to them even happening.

Angela Walker: 7:12

So that was quite some time ago, and you've carried on with your work for SUDEP Action. How are things now? Because your partner's death was in 1990, you would have thought things would have come a long way since then. What are your concerns about sudden death in epilepsy now then?

Jane Hanna OBE: 7:34

I think the you know after 30 years I think it's common really with lots of causes, isn't it? And movements. You know that it takes decades to actually feed through to the kind of changes that will actually sort of stop lives and you learn about all the barriers that are put in the way of actually the actions happening to stop the loss of life. And so, in terms of how things are now, we knew before the pandemic that epilepsy deaths, in fact all deaths from neurology, were rising before the pandemic when all other deaths were actually reducing. And we know from the evidence that with epilepsy it was the young deaths. These are very, very premature deaths. They're young people. And we also know that people are dying three times more at risk in deprived communities.

Jane Hanna OBE: 8:51

We also know that you know we've had a doubling of maternal deaths, a really starking statistic that you know the national surveillance body's never seen before that kind of doubling of a trend of deaths in mums and their unborn, which is really concerning. And we're also seeing that people with learning disability and epilepsy are dying 10 years younger than people learning disability with any other comorbidity and it's a leading cause of death in people with autism. So I suppose it's hopeful in a sense that we have those statistics, because when I started 30 years ago and I joined arms with four other women who founded the charity, we had nothing, we had no knowledge, we had a world that didn't even give any visibility at all to these deaths. So now actually we have all the statistics. Really, we need actually to show that there is a supreme public health inequality here, there is a systemic inequality, and that the worst case scenario of that is that we have at least 21 people dying each week who are still in the hospital, and I've learned that really, until the officialdom and until the media and the public sort of wake up to this, that the dust will continue to happen.

Jane Hanna OBE: 10:46

So in a sense it's in one way, quite depressing. But there is something which is about bearing witness. Epilepsy has been a very discriminated against condition for ever since it was recognised back in the time of the Greeks. It's one of the oldest conditions known to us and yet it is one of the most neglected conditions. So the community is very well. It's very resilient in a sense, because the community has come through gross discriminations over the years and it's only in recent years that people with epilepsy have been accorded basic human rights.

Angela Walker: 11:37

Do we know what's going on in somebody's brain when they have an epileptic seizure?

Jane Hanna OBE: 11:42

Yeah, it's really really straightforward actually. I mean, you sort of have a it's a bit a little bit of electricity that goes off in the brain, so it'll happen to one in 20 of us in our lifetime. Just a little bit of chemistry in the brain that sparks off, and depending where it sparks off in the brain will depend, in a way, what your body does. So there are over 40, well over 40 different types of seizures and epilepsies, and they range from where someone might look like they're in a daydream and to the example of the seizure where the whole body is convulsing, because it's a generalised seizure across the brain, so the whole body convulses. The person will fall down and be unconscious, and I suppose that's the type of seizure that people are most familiar with. But there are all sorts of different seizures, and so that's why it's really important that people are able to get the attention they need if they have a seizure, so the right diagnosis can be given and the right treatment can be given and actually they can get on with their lives.

Angela Walker: 13:09

And I know that you're concerned about the way that the medical community are dealing with epilepsy. What are your concerns about that?

Jane Hanna OBE: 13:21

I've always. Our organisation could not have founded without champion researchers and clinicians who came alongside to say this was a thing and actually we need to define SUDA, we need to do the research, we need to know the risk factors and we need then to do the interventions to save people. So we have very strong relationships with clinical and research teams. There has, however, one would have to say that there has been a cultural attitude towards epilepsy and that whilst that is changing, that has changed dramatically since I've been involved, but we're still not quite in the place. That other conditions are in terms of if you have asthma, if you have diabetes, if you have these well-established conditions in the community, you will actually be seen by somebody who in the community, who will check in on you and you will be given information about the condition, about the risks and actually what you can do to help keep safe and be well. We haven't got there yet. We haven't got there yet for epilepsy.

Angela Walker: 15:00

So you're talking really about management of the condition from the sounds of it. So talk me through it. What happens at the moment if somebody's diagnosed as having epilepsy? What's the kind of? How are they managed in the medical community?

Jane Hanna OBE: 15:19

Okay, well, if we start with the UK and actually just think about someone first who has a seizure that's suspected as being potentially epilepsy, well I know, for example, with a lot of the colleagues I work with, that that person might wait 12 months to actually be referred for a diagnosis. So that would be the first thing that we really need to sort out, because, you know, we wouldn't do that for a heart attack, we wouldn't do that for a stroke.

Angela Walker: 15:50

You could have multiple seizures in that 12 month period.

Jane Hanna OBE: 15:53

Yeah, you could die and actually that's what's happened through the pandemic. So we've been alongside families whether deaths have happened while they're waiting to be diagnosed. So that is a real concern that we have to increase the workforce for people with epilepsy. There needed to be a work plan decades ago and we need to catch up with that, and epilepsy needs to be included in the government's work on major conditions.

Angela Walker: 16:31

Who's most at risk from sudden death, from epilepsy?

Jane Hanna OBE: 16:36

We have a Sudden Pansesia Safety Checklist and a Nepsimon app which include the latest science. It sort of brings the expertise to the tip of knowledge for any professional working with people with epilepsy and also for people with epilepsy and their families. We have anyone over 16 and it's young adults who are most at risk of Sudden can access this information directly and we're looking at risk factors like what type of epilepsy do you have? Do you experience generalized tonic-clonic seizures? Those types of seizures do carry a heightened risk of Sudden. If someone's experiencing seizures which don't involve convulsions, then they're likely their conversation with their doctor is actually going to be. Actually, there is no risk If you're having dangerous types of seizures.

Jane Hanna OBE: 17:47

These are the people who need the urgent attention and support in order to keep safe. If people are having nocturnal seizures, then those nighttime seizures also increase your risk. So there are things you can do. There are ways to keep safe and to keep well, but it can only happen if these risks are actually recognized. If someone is going into accident in emergency. So presentation accident emergency is a risk factor. We know that from the population-based research we've done. If somebody's mental health is suffering, you know someone's experiencing depression, anxiety.

Angela Walker: 18:37

So it sounds like we need to be understanding the risks, but also maybe there needs to be a change in protocol. If somebody has a seizure, they go to A&E. What should happen then, do you think?

Jane Hanna OBE: 18:52

Yeah, well, there's been a really big report that we called for and we've been part of the National Confidential Inquiry into people with epilepsy presenting to accident emergency and it really found that there was no system. So people were going into accident emergency and then they were leaving accident emergency and in a lot of places risk was not recognized and was not been managed and it wasn't going anywhere and it wasn't being picked up. So what we really need is for the local NHS and the local social care to include epilepsy in its strategic plans. So there's a lot of local systems that have been working on what gets included, and so we want epilepsy included as as this poorly served community and where it makes huge sense because we really, if we can, seizures are a major reason why people go into A&E, so why don't we keep them out of A&E and actually sort of help people and support them in the community? To help the local NHS do that.

Jane Hanna OBE: 20:07

We need the government also to recognize that epilepsy should be included in long-term conditions. Really, neurology should be included. We shouldn't just be concerned about the neck down. We should be concerned as a society about, you know, conditions that affect our brain as well, and epilepsy is the one that perhaps presents the most acutely in terms of sudden death and is particularly impacting these, these young deaths.

Jane Hanna OBE: 20:37

So we need the system to recognize and we need it to connect to connect with the medical teams, to connect with the patient sector, the voluntary sector, connect with our organization, because if we connected everything up we would be able to do amazing things and actually the voluntary sector has got a huge amount to give and really to help people because we've got the understanding of lived experience. Within our voluntary sector we're able to do co-production, which actually means that people living with the condition and their families have their needs and their concerns identified and worked with. But they can't do it without the expertise. We need the expertise of the doctors, we need the pharmacists to achieve peace, just to be aware of risk. They don't need to know all the ins and outs of epilepsy that's impossible but they need to know enough about is somebody at risk? And do I need to escalate this?

Angela Walker: 21:38

But you know, I would always have assumed that medical professionals would have a basic understanding of epilepsy and the risk. So are you saying that that's not the case?

Jane Hanna OBE: 21:50

Not every doctor that would be trained would not have that training on SUDAP and risk. And the same with pharmacy who are managing drugs and helping patients with medications which is the first line of defence against SUDAP they would also not have that training. So this is really where we need the safety net of knowledge, and it's very difficult to suddenly train everybody, and it's also very difficult to help professionals to keep particular things in mind because, particularly in the community, they're dealing with everything, aren't they? They're dealing with every single health condition. So that's why we've innovated the working with research and evidence and working with people with epilepsy.

Jane Hanna OBE: 22:49

We've developed digital solutions, so the Epsomal app, for example. You don't need to remember. All you need to do is actually look at the checklist, ask the patient use the app, suggest the patient uses the app and that's it. It's actually quite simple in terms of that awareness of risk. Then the rest of it follows, because then whatever each person needs is going to be different, but the system will be able to at least respond to that, because they're not being the dark, and that's what we want to change.

Angela Walker: 23:28

The app sounds useful because it means that it sounds like medics wouldn't have to have a great deal of training. They would just need to know that they need to refer to this app in the circumstances of dealing with someone with epilepsy or someone who's haven't had a seizure, so that sounds like a good step forward. Does it gather information as well? The app does it help to give you information about how many people are having seizures and so forth?

Jane Hanna OBE: 23:59

Yes. So there are 5,000 people registered with the app and they've consented and because of that we've been able to do research with 2,300 women, for example, who are using the app to sort of better understand their understanding of information, their understanding of the communications that they need in order to make the choices that are vital to them in their care. So there's huge potential with the app and with the checklist. The checklist is embedded in GP systems already, most of them so they can just use it. We've managed to do that through the pandemic. So these solutions are really important and they're really a gift. They're a gift from all the bereaved families. So these developments have been funded over the years by really the families who don't want other families to be in the same position that they are and to enable people to have choices.

Jane Hanna OBE: 25:12

So it's a not-for-profit app, but it's actually recommended by NHS Right Care, it's recommended by Embrace, who've looked at all the maternal deaths. It's been sort of recommended with the learning disability deaths. So it's not everything. It's just a little bit of a contribution to lift awareness so that when the person is in front of the doctor or the pharmacist or whoever, they can just show the wheel and say, ok, well, this bit's out of kilter or this bit's out of kilter, how are you going to help me get this help? Because sometimes it might not be to go to a neurologist, it might be actually. They need the help of the mental health support team. It's about where they need to go next and that's the bit that can help.

Jane Hanna OBE: 26:11

We've just had a major investment in the app. So there was a fantastic family who cycled from London to Ackle on the west coast of Ireland. They were near retirement, never cycled before, did it last summer with 21 of their friends and they raised a really significant amount of money, so that we're actually now able to work on Phase 2 of the app to make it even more accessible and useful to all the people that use it, and that will also enable us to do really valuable research.

Angela Walker: 26:55

That's great news. Tell me a little bit more about this worrying rise in maternal death. Give me some figures and also tell me what you think is behind it, because I know you've got concerns about a particular antiseasure medication and its link with women not taking their medication. Tell me a bit about that.

Jane Hanna OBE: 27:19

So the maternal deaths doubled, so that in the period 2016 to 2018 there were 19 deaths of women and the National Surveillance Report was very clear that in all these deaths there were major medicines issues and there were women who'd stopped their medication.

Jane Hanna OBE: 27:49

There were women on substantially reduced medications and the Embrace Report itself sort of highlighted a concern about and recommended that women must be given specialised communications, counselling about risk, and it was in that context that they sort of recommend the use of the app Sudapakshan. We have a death register, not just Sudap but all epilepsy related deaths, and we have reports from over a thousand families, detailed reports, and 19 of the reports we have since 2016 are in women who've died during pregnancy with their unborn. So we're about to sort of publish the research on those women. We know from working on deaths, so every year we work on about 77 inquests every year and we know from that work individual deaths and how women have not been accessing that information about Sudap, that person-centered information about what risks there are and the risk to the unborn, because clearly there's a risk to the unborn and that is really concerning because if you don't.

Angela Walker: 29:33

Why aren't women getting this information?

Jane Hanna OBE: 29:38

Well, it's also the case that women are not not all women are getting the information about the side effects of medicines as well, and if you look across the country, there's just not the resources that have been put into preconception counselling and sort of ongoing counselling.

Jane Hanna OBE: 30:04

So we get back to that problem that I was talking about at the start, which is it's a poorly served community which has not had the resources that it needs, and so that makes it difficult to systematically make sure that every single woman would get that information about their condition, about the risks of that condition, about their options what are your best options and what are your choices and that, and as medicine is the first line of defence against seizures and against deaths and get it going into A and B it just it's obviously critical that that information is there alongside all the information about medicines and side effects.

Jane Hanna OBE: 31:02

And of course we do know with women, you know, and if we look at a particular drug, sort of valparate, we know that valparate, you know, has significant risks of harm to the unborn and so it's not. This is not an easy thing, but however, we also know that valparate is the most effective drug we have for women who have generalised tonic-clonic seizures that are the most dangerous seizures. So we know that from clinical trials and the big problem we have is that it's going to take some years before there is any better medication. You know better medications which have equal effectiveness and have don't have big problems with the safety profile in relation to the unborn. At the same time and that's the problem we've got we don't have an easy solution.

Angela Walker: 32:10

I mean if a woman wants a child and she has epilepsy, what can she do? Because clearly having seizures is extremely dangerous for her and the unborn child, but sodium valparate could lead to birth defects. So what can a woman in that situation do? What are her options?

Jane Hanna OBE: 32:33

Well, if they are accessing, like a specialist midwife, you know, or a specialist who understands the medications, there are always options. One of the problems is where you have a policy or an approach to people with epilepsy men or women because actually this is a policy that's going to extend to men. The problem is that if you treat a population as permanently reproducing from, you know, from a nine-year-old child through to a 55-year-old woman or man and you sort of say that a drug bad people shouldn't be on it, we've got to be very mindful that there are going to be deaths and there are going to be A&Es, and there's going to be children not at school and there's going to be people who lose their driving licenses and can't work. So that's why, ultimately, it's sort of about whose decision is it? Is it the state's decision? Well, it sounds like it would be for any other health condition.

Angela Walker: 34:12

So it sounds like what you might be saying is people need a bespoke plan. So a drug that's dangerous for a pregnant woman is not necessarily dangerous for, you know, a middle-aged man. So are you saying that this sodium valparate has been tarnished, its reputation has been tarnished and so people who would benefit from it are dying because they're not taking that drug? Is that what you're suggesting?

Jane Hanna OBE: 34:47

Well, we need to sort of look at the deaths really closely and we need to look at the learnings from deaths that are coming through inquests, to learn lessons where we find that people are dying who have not been sort of offered valparate and have not been offered options. Because, of course, you've got to remember, for a woman there are lots of decisions, aren't there? There's decisions about whether you want to have a child, whether you don't want to child, when you might have a child, whether it's really important to have a birth child, or whether you might want you to adopt, or do you know? There's actually quite a lot of choices that women could have, but they're not necessarily going to have those conversations if they don't actually appreciate what the benefits of medicines are relative to the harms of medicines. And so it has to be person centred, it has to be bespoke to their particular condition.

Angela Walker: 35:59

Is sodium valparate only dangerous while you're taking it, or could a woman take it and then stop taking it for a period while she had her children?

Jane Hanna OBE: 36:12

So this is where a specialist midwife would be able to talk through all of those and create a plan and absolutely there are lots of options and I know that because we work really closely with the specialists sort of midwives and specialist doctors so we know that there are many, many options that can be explored. But it can only happen if there is this counselling, if there is, there is the resource in the system to, you know, have those conversations with women.

Angela Walker: 36:46

Now I know you mentioned previously well, I know you mentioned previously to me that not all deaths related to epilepsy are registered as such, and that's something that you're very concerned about, because I guess if someone dies as a result of epilepsy and it doesn't go down on their death certificate, then that's really skewing the data. So tell me a bit about what's going on and your worries there.

Jane Hanna OBE: 37:16

So when we started, deaths were just put down as anything and quite often they were put down as unassetained and that means that you're really denying the existence of the person who's died. There's no value sort of put on them. There's no value put on the the prevention of future deaths. So that improved hugely, you know, after we got things going and sort of changed the world view on epilepsy deaths and Sudak, and here in the UK we got pathology guidance in 2006 which set out for pathologists and coroners what to do if somebody dies who has epilepsy. So that was a great move forward and you know, we did see improvements on recordings of deaths.

Jane Hanna OBE: 38:24

However, my team, as I say, we work on 77 inquests in a year and so it's really quite common for us to see deaths in people with epilepsy being put down as that the heart has stopped and the pathology guidance aren't used. There was a really important case in the Midlands about the death of a young man called Clive Tracy, and the family fought for four years to get recognition of how he died and what the actions needed to be to prevent future deaths and Sudak. Action was able to go in with the evidence we have so that Clive's death could count, and there is now really good work going on in the Midlands area on patient safety, which has actually been shortlisted for a prize from by the health service journal. So so I think that sort of shows you that the real importance of having the death counted is that you can actually change and make improvements to keep people safer 20 deaths a week.

Angela Walker: 39:44

I mean, if people, if 20 people are being shot every week, you know I mean would be people will be outraged. That's a really high number, especially if, as you say, a lot of those deaths are preventable.

Jane Hanna OBE: 40:00

Yes, it's 21, and conservatively, as I say, when we did the national surveillance we were able to show two decades ago that there were 42 percent that were potentially avoidable. We've got we've got so many more improvements now and we know from other research that the potential for stopping deaths is much higher. And, as you say, it's 21 a week. But it's all to do with visibility and you're right. If, if these were 21 mainly young people who died suddenly in a week and we could see them all died in the street somewhere, everyone would be all over it. But because these deaths happen in people's homes and they happen all over the UK in different places and they pop up as small sort of media reports in different places, they don't, the public never really gets to to see the see the visibility of this and see the impact on the families.

Jane Hanna OBE: 41:13

We've done the research with the families. So we've got the evidence that the harm to families, the trauma to families, is lifelong. We have many families that have been with us for decades and we have hugely inspirational people who have somehow been resilient against that and against the invisibility, against the system not really recognizing, not really including epilepsy. You've got inspirational families who have done everything in their power to move things forward in spite of that. But they shouldn't have to fight, they shouldn't. They should be allowed to grieve and to pay tribute to, you know, to celebrate that life, which they do. So the, the families, do celebrate the real positivity and contribution of the, the people you know, to this world, but they have to fight all this hard stuff as well, and it really has to stop. You know, we, we really need our culture to change and to really embrace learning the lessons from us and doing the simple things first, the basic things that could, could do a lot to improve lives in a nutshell, what would you like to see done now around?

Jane Hanna OBE: 42:54

sort of the whole of the uk. I, I would really like to see every community sort of being supported so that the simple stuff, that where somebody has a seizure, but immediately that is picked up in a community by someone who has enough knowledge in order to help that person navigate, help that person to advocate, to really get the best they can for themselves, so that really, you know, seven out of ten people they should be seizure free. It shouldn't be an issue, and though that needs to happen so that people can just get on with their lives. That's what we'd like to see. We'd like to see, you know, our risk tools just being used, you know, people being told about them, so they can use them, so they can really sort of advocate for themselves.

Jane Hanna OBE: 43:57

We would like to read families. You know, when there is a death, we would really like people to listen and there to be learning after a death. We see systems now and they sort of say we'll only listen, we'll only look at this if you can tell us that this is negligence. And, you know, if we're in a society now where we're actually sort of saying to bereaved families who are in pain, in trauma, you've got to get lawyers, you've got to sue before we'll actually start looking at lessons. That's a really sad state of affairs. So we're fighting back against that. We would like to see humanity, we would like to see families being given the choices so they can get the specialist counselling, they can get the support for inquests, they can get involved in research, they can get involved in the cause in a really positive way, so that there's hope, and we really don't want families caught up in litigations which last for years.

Angela Walker: 45:12

It sounds like investment in. I mean, really it's about prevention and it sounds like an education issue and a management issue to prevent these deaths in the first place rather than managing the way that these deaths are dealt with. You know, if they could be prevented up front, obviously that's the number one priority, surely?

Jane Hanna OBE: 45:36

It is the number one priority, but what we've found over the years is that actually, what does prompt improvements in local places is where, sadly, there is the worst case has happened.

Jane Hanna OBE: 45:51

Really, it shouldn't have happened, and that's when we get, for example, the system investing in. We need more specialist, we need another specialist nurse, we need to do training, we need to use the checklist, and so that's why the learning from us is important, because when people see a young person, a vibrant young person or a person with learning disability, vibrant as well in their community, that could have been doing all sorts of contributions, they are shocked. Actually, they are shocked and they do get motivated by those individuals, and so that's why they are connected and that's why, certainly, the charity works in a very holistic way. So the engine room for change does come from the bereaved families, as well as from the research teams and the clinicians and from people with epilepsy. But we would like a world, really, where it would be very easy for people with epilepsy to stand up and to have the information they need and get the support so that they can get the treatment and they can just get on with all the marvellous things that they can do to contribute to our society.

Angela Walker: 47:15

Which they can do if they get their condition under control, and they can get their condition under control if it's managed by the medical community properly. From the sound of it.

Jane Hanna OBE: 47:28

Yeah, as I say, there's been report after report after report. When I did the actual order in 2002, there'd already been six national reports, been lots of reports since 2002, and the problem is that we just get caught up in this paperwork trail and the charities get invited to be part of all sorts of initiatives at a national level, but the action on the ground we don't see, and that sort of has to stop, and that can only stop by actually having epilepsy included in strategic planning. There have to be the levers to actually make things happen and to a lot of, the clinicians that go into epilepsy are very, very motivated. They're very, very caring. It's not a popular area to go into and they've gone into this area because they really want to make things better for people with epilepsy. But they often work in systems which really treat epilepsy as like bread and butter. They don't really take it terribly seriously.

Jane Hanna OBE: 48:43

And that's what the Chief Medical Officer said in 2002. He said this is the problem. It's just not taken seriously in the way that it should be, and that's why we're talking about this being a public health crisis. In a way, it's about inequalities, it's about that, and so that has to be recognised and worked on, and we weren't, you know, if we were to do all this, we're not going to stop all the deaths, because some people will die from the condition, in the same way that people die from other conditions, and we need more research to improve the chances of people with epilepsy using people with rare forms of epilepsy and genetic epilepsy, where there might be, you know, cures in the future.

Jane Hanna OBE: 49:36

But what we have to do is the here and now. We can't have, you know, more and more years of just saying the same. It's at least 21 deaths a week. As a charity, it's heartbreaking, really, to see the deaths come in day in, day out, and to, you know, be alongside those families is absolutely crucial. And but there has to be a system response and we need the sort of visibility like you're giving today, angela. I mean it's just fantastic, you know, to have you doing this podcast because it just means so much to people, and we have other champion journalists who are willing to be brave. We're willing to actually, you know, look at something that has been, you know, isn't for some reason considered, you know, sexy enough or whatever it is, you know, to make the news. I mean it's, thank you so much, no problem.

Angela Walker: 50:41

Well, it's an important issue and it's obviously been under reported for a long time, so I'm really happy to talk to you about it. Thank you very much, jane. Thank you, thank you very much. My guest today has been Jane Hanna, the founder of Sudette Action. I hope you've enjoyed the show. For more information, check out my website, angelawalkerreportscom, and if you know someone inspirational that I should be talking to, or if there's an under reported issue I should be discussing, let me know. Until next time, take care.