IEC 2023 | Challenges in epilepsy management: perspectives from a specialist nurse
Phil Tittensor, RNMH, MSc, The Royal Wolverhampton NHS Trust, Wolverhampton, UK, delves into the existing challenges in epilepsy management within the field of epilepsy specialist nursing. Notably, the lack of expert resource can lead to sub-optimal management. One current challenge surrounds new prescribing practices which necessitate the opinion of two epilepsy specialists in order for an individual aged under 55 to be prescribed sodium valproate, as well as for the first time requiring men to undergo a full review prior to the prescribing of valproate, and calling for anyone currently taking sodium valproate to have a review of their epilepsy treatment. This will put significant pressure on an already limited expert workforce and could have implications for patient’s treatment. Mr. Tittensor also highlights vulnerable populations who require additional services such as pregnant women and patients with learning disabilities who struggle with the demanding diagnostic procedures. Although there are current initiatives to address these issues, further efforts are necessary. This interview took place at the International Epilepsy Congress (IEC) 2023 in Dublin, Ireland.
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Transcript (edited for clarity)
There is a lack of expert resource and I think you see that in a number of areas. So, the obvious example at the moment is the debate around sodium valproate and a feeling that some women have still not been getting the advice that they should about the drug, the impacts of it, and the teratogenicity. And now, of course, we’ve got emerging data about men and whether there may be a problem there, trans-generational risks and so on...
There is a lack of expert resource and I think you see that in a number of areas. So, the obvious example at the moment is the debate around sodium valproate and a feeling that some women have still not been getting the advice that they should about the drug, the impacts of it, and the teratogenicity. And now, of course, we’ve got emerging data about men and whether there may be a problem there, trans-generational risks and so on. And when you do have people taking that drug and the number of specialists available to counsel, you do the maths and you start to find that you’ve tied up almost the whole of the epilepsy nursing workforce in the UK just trying to counsel those people. When you add in things like risk factors, sudden unexpected death, and looking at risks rather than just a blanket statement that seizures can be life threateningly dangerous. When you actually try to drill that down and apply it to an individual, it takes time.
We have another big group with women who are pregnant and there was the recent MBRRACE report highlighting a rather dramatic increase in maternal deaths of women with epilepsy. So again, careful management through pregnancy is really important.
And close to my own heart, I’m a learning disability nurse by background, although I’ve worked in neurology for nearly a quarter of a century now, which makes me feel really old. We have particular challenges in that cohort, and I think this is where artificial intelligence is coming full circle and can really help us with diagnostics in people who really find it very difficult to tolerate a standard battery of tests such as EEG, MRI, and so on. But, actually supporting that group of people, I think is very important. Again, there’s a mortality risk. If we look at the recent LeDeR reports, epilepsy is being highlighted as one of the biggest risks for premature mortality in people with intellectual disabilities, and there are very few joined up services. There have been a lot of moves to try to address this. An excellent document called Step Together in 2021 was really highlighting the need for learning disability services, intellectual disability services, and neurology to work more closely together. I run a joint epilepsy and intellectual disability clinic and a couple of colleagues do, but think we are the exception rather than the rule with that as well. So, there’s a there’s a lot of need out there.
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