International Epilepsy Day!! - Helen Cross, Great Ormond Street Hospital, UK
Hear all about International Epilepsy Day, the needs of those affected by the epilepsies, eradicating stigma, treating and preventing epilepsy, and hope for the future; all with global lead Helen Cross.
Reported by Torie Robinson | Edited and produced by Pete Allen
Podcast
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Hello Helen. Thank you so much for joining us for International Epilepsy Day. It's lovely to have you here. Could you tell everyone a bit about yourself and what exactly you do, please?
Helen Cross
Okay, so I'm Helen Cross. I'm my official title is I'm Professor of Childhood Epilepsy - while the Prince of Wales is Chair of Childhood Epilepsy - at University College London, Great Ormond Street Institute of Child Health and Great Ormond Street Hospital, as well as Young Epilepsy in Surrey in the UK. I am also, just to say I'm Director of the Institute of Child Health, but I also, of course, I'm the elected president currently of the International League Against Epilepsy.
Torie Robinson
And what… could you just give us a bit of, a bit about your background? What could you need to specialise in the epilepsies and particularly paediatric epilepsy?
Helen Cross
So, I trained originally as a paediatrician and then as a paediatric neurologist, which deals with anything neurological, whether it be something wrong with the brain or the muscles. But then, was very lucky - when I first started in my paediatric neurology training - to come to Great Ormond Street, where they had one of the first clinical MRI scanners for children. So, I did a Ph.D. in imaging of the brain in children, and also therefore became very involved in initiating and maintaining the epilepsy surgery program at Great Ormond Street Hospital. But then as part of that, really my remit and what I did, was rare and complex epilepsies. So many of the patients I see have difficult to control seizures. It's a case and therefore we've moved not only now from imaging and advanced imaging epilepsy surgery, but of course genetics and newer ways of treating the more complex epilepsies.
Torie Robinson
Which is pretty exciting stuff and I think gives real people real hope for the future. If not right now, then in the future things are happening right.
Helen Cross
Yeah, they just don't happen quick enough for my patients! And I think, you know, we're making a diagnoses in far more of my patients than we ever did when I started. But, you know, getting the cause in some children means a different way of treatment, [but] for the mass majority at the moment, it doesn't. And getting the next stage is frustratingly slow for parents, I think.
Torie Robinson
For many parties, I guess. And I guess this is also a great example of why governments need to invest a little bit more cash in the epilepsies to improve the quality of life of the individuals with the diagnosis, but also their families and wider communities, right?
Helen Cross
Yeah, I mean, I think, you know, looking at my day-to-day job, of course, I'm really concentrating on the complex end in a relatively resource-rich country - she says! But you know, when we think about epilepsy worldwide, it affects 50 million people and 80% of those people are actually in resource-poor countries. And therefore, the opportunities are not the same. There's a huge treatment gap continuing. I've been lucky enough to be involved in some
Helen Cross
some projects, for example, in Africa, in the EPInA project (Epilepsy Pathway Innovation in Africa project): a project between Ghana, Tanzania and Kenya - in trying to improve services, improve diagnostics, improve access to treatments. And, you know, it's still… trying to find the resource, trying to find the understanding…, you know, that we know that better specialist care, better diagnosis reduces mortality. But many of those in resource-poor countries – with regard to epilepsies – will be seen by Primary healthcare workers, they'll be looked after by primary healthcare workers, what sort of training can we give, what sort of support can we give? And then of course there's the whole access to treatments.
We can, you know, 70% of individuals, if we give them the right medical treatment, could become seizure free, but we're nowhere near that in many places either.
Torie Robinson
Would you also say it's important for us to sometimes, well actually I think all the time, but look beyond seizures alone because seizures can often be one symptom of a disease, is that right?
Helen Cross
Absolutely. And you know, the first thing to say is: about 25% of the epilepsies are actually preventable because they're caused by other things such as infection, stroke, dementia, well, not dementia being preventable, but stroke, and maybe perinatal birth injury, for example. These are preventable causes. And that's one aspect. But then when you come to other aspects: yes, there's those where epilepsy is a, I suppose, a marker of brain health. It's come on as a consequence of an underlying disease. But even where it's mainly seen as the primary problem, whether there is the really complex group, the Developmental and Epileptic Encephalopathies early onset, where there's a lot of other things going on, learning and behaviour issues, gut problems, eating problems, sleep problems… Which it's a whole… you know, it's not just the seizures that cause the impaired Quality of Life! But even you get those [people] where maybe seizures are the only things [(diagnosed)] there is high rates of depression, anxiety, which also equally need to be considered and treated.
Torie Robinson
Thank you, I couldn't agree more. And so, what should everybody do for International Epilepsy Day? What's our message?
Helen Cross
I think our overall message is looking at the patient journey and looking at what we can do to help that patient journey. You know, whether it be involved in getting the right treatment - a diagnosis and treatment early on, getting the right information, getting the right support, ultimately, ongoing with that journey; optimising their outcomes, optimising their lifestyle, optimising their Quality of Life. And I think that's one of the messages.
Helen Cross
Yes, we are all focused on the Intersectoral Global Action Plan for epilepsy and other neurological disorders - which was approved and launched by the WHA (the World Health Assembly), in 2022. But, and there's various aspects of that… to try and look at various aspects, whether it be, you know, improving access, looking at training, and when it comes to access: access to healthcare and medication. For an individual, it is a journey, and we want to try and improve that journey. And therefore, on the bigger picture, we're looking at implementation of the Intersectoral Global Action Plan. But for the individual, we need to look at their journey and improving that journey.
Torie Robinson
And would you say part of improving that journey would, well, yes, access to clinicians, access to drugs, access to care, and all as early as possible?
Helen Cross
Yes, absolutely. I mean, I think, you know, the sooner an individual gets a diagnosis, the sooner they get the most appropriate treatment and the easier, the greater the understanding they may have.
And there's all sorts of aspects to that as well. For example, risks of mortality! Many of the individuals in resource poor countries that are undiagnosed: there's a high rate of injury. There's a rate of mortality, there’s Sudden Unexpected Death in Epilepsy. And the earlier you talk to individuals about these and manage to give them a treatment, the greater chances you have for longer term survival.
Torie Robinson
Would you say education overall is an important thing? I do notice differences in perceptions of the epilepsies between not just continents but countries or areas of countries and that can affect how a person treats a person with epilepsy or whether a person accepts treatment and things like that.
Helen Cross
I think one of the aims of the International League Against Epilepsy is to produce a consistency of message. And to give the information we need to to provide consensus about what certain things mean. But one thing that we've all recognised is the degree of stigma still held for those with epilepsy - wherever you are in the world. And the greater the stigma, the greater it's hidden and the less likely an individual is to seek healthcare - because of their feeling or the wrong ideas about what they have, about what's wrong with them. So, you know, all of us need to work towards alleviating stigma, reducing stigma, getting out the awareness of what epilepsy is. It's not contagious disease. It's not, you know, a religious cultural belief, that it is a genuine medical condition and you can respond to treatment, then the better outcomes we will have for our patients.
Torie Robinson
And would you say for people who have a refractory epilepsy, or their loved one has refractory epilepsy, there is realistic hope for the future?
Helen Cross
Oh, absolutely. I mean, when I came into this… into my career a long time ago, you know, somebody actually questioned why I wanted to go into epilepsy because “What could you do?!”. And yeah, we had a few drugs and epilepsy surgery for children was up and coming (it was perhaps a little more established for adults). But there is so much more we can do. And something that I always have a mantra for whoever sits in my clinic is: there always is something we can do. No, we may not, you know, yes, some may be suitable for epilepsy surgery, others for newer drugs, we’ve always got newer drugs coming on the market. It may not be that the seizures are the main issue. And then if we have an underlying genetic diagnosis, perhaps there's a different path we can go. So, there is always something we can do. Acknowledging I can't wave a magic wand and maybe my life would be a lot easier if I could do that! But there's always something we can do and the one excitement is how far we've come over the past 10 years: whether it be through imaging, through genetics, through the treatments, the different aspects of treatment that we're looking at now: stimulatory therapy for example, stimulation for example.
There's so much that's come on board over the past 10 years. Just think where we're going to go in the next 10 years.
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Helen Cross is the Professor of the Childhood Epilepsy and Developmental Neurosciences Research and Teaching Department at the University College London, Great Ormond Street Institute of Child Health and Great Ormond Street Hospital, as well as Trustee of Young Epilepsy in Surrey in the UK. Helen is also the Director of the Institute of Child Health and the elected president currently of the International League Against Epilepsy.
Helen trained in Birmingham, in medicine and subsequently paediatrics, and then came to Great Ormond Street Hospital to train in paediatric neurology. The primary focus of her research has been optimising outcomes in the early onset epilepsies, which has included epidemiology, clinical trials and outcome studies. She has also worked extensively with patient disease advocacy groups.
Helen is known for the work she has undertaken to develop epilepsy surgery in children, especially presurgical evaluation and the monitoring of postsurgical outcomes. She is also renowned for her contribution to the evidence base for the ketogenic diet in the treatment of epilepsy in children, now in the NICE guidelines.
Helen was the first and to date the only woman to be elected as President of the British Paediatric Neurology Association (2008), and in 2013, the first woman to be elected to the management committee of the International League Against Epilepsy. She has been Clinical Advisor to the national Children’s Epilepsy Surgery Service since its inception in 2012, was Topic Advisor to the update of the NICE guidelines on epilepsies 2018-2022, served on the subpanel 1 of the clinical medicine Ref2021 review, and is currently elected President of the International League Against Epilepsy 2021-2025, amongst other roles.
Helen is recognised for her work both nationally and internationally; she received the ‘Ambassador for Epilepsy’ award from the International League Against Epilepsy (2007), was awarded an OBE for services to children with epilepsy (2015) and has received the Clinical Research Award from the American Epilepsy Society, and the Frank Ford Award for contribution to Paediatric Neurology by the International Child Neurology Association (2018).
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ILAE: j-helen-cross
IBE: committees
Great Ormond Street Hospital: helen-cross
UCL: helen-cross
Dravet UK: professor-helen-cross
Young Epilepsy: board-trustees