11/13/24, 8\:17 PM Guide | Epilepsy counselling

Epilepsy counselling

Table of contents

Introduction

Being able to share information in a clear and concise way is an essential skill in all
simple explanations, such as why a blood test may be needed, to more complex situations, such as explaining a new diagnosis.
Often, sharing information with a patient occurs naturally during a consultation. However, providing clinical information may
also be the primary focus of an appointment, and in these situations, it is crucial to have a structured format to communicate
e
In the United Kingdom, the prevalence of epilepsy is approximately 5–10 cases per 1000. This means that explaining a
diagnosis of epilepsy is a key clinical skill.
This guide provides a step-by-step approach to explaining a diagnosis of epilepsy and should be used in conjunction with our
information giving guide.

Structure

Explaining a diagnosis requires structure and adequate background knowledge of the disease. Whether the information
being shared is about a procedure, a new drug or a disease, the BUCES structure (shown below) can be used.
BUCES structure for explaining a diagnosis

Opening the consultation

Wash your hands and don PPE if appropriate.
Introduce yourself to the patient including your name and role.
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Con
BUCES can be used to structure a consultation in which providing information is the primary focus.
Before explaining the various aspects of a disease, it is fundamental to have a common starting point with your patient. This
helps to establish rapport and creates an open environment in which the patient can raise concerns, ask questions and gain a
better understanding of their problem.
After introducing yourself, it is important to take a brief history (this is the
What has brought the patient in to see you today?
What are their symptoms?
Are there any risk factors that can be identi
Tip\: Practice taking concise histories to get the timing right. In OSCE stations, timing is crucial and you do not want to spend all
your time taking a history when you are meant to be explaining a diagnosis! A rough guide would be to keep the introduction
and brief history between 1-2 minutes maximum.

What does the patient understand?

Following a brief history, it is important to gauge the patient’s knowledge of their condition. Some patients may have a family
member with epilepsy and therefore have a fairly good understanding of what the condition entails. Other patients may have
heard of epilepsy, but only have a vague understanding of the important details. The patient sitting before you may not even
know that they have epilepsy and you may be the
Due to these reasons, it is important to start with open questioning. Good examples include\:
“ W h a t d o y o u t h i n k i s c a u s i n g y o u r s y m p t o m s ?”
“ W h a t d o y o u k n o w a b o u t e p i l e p s y ?”
“ W h a t h a s b e e n e x p l a i n e d t o y o u a b o u t e p i l e p s y s o f a r ?”
Open questioning should help you to determine what the patient currently understands, allowing you to tailor your
explanation at an appropriate level.
At this stage, primarily focus on listening to the patient. It may also be helpful to give positive feedback as the patient talks
(i.e. should a patient demonstrate some understanding, reinforce this knowledge with encouraging words and non-verbal
communication such as nodding).
Checking the patient’s understanding should not be solely con
throughout by repeatedly ‘chunking and checking’
.
Tip\: Try using phrases such as\:
“ J u s t t o c h e c k t h a t I a m e x p l a i n i n g e p i l e p s y c l e a r l y , c a n y o u r e p e a t b a c k t o m e w h a t y o u
u n d e r s t a n d s o f a r ?”
. This is far better than only saying “ W h a t d o y o u u n d e r s t a n d s o f a r ?” as the onus is placed upon the quality
of your explanation rather than there being an issue with the patient’s ability to understand.

What are the patient's concerns?

The patient’s concerns should never be overlooked. A diagnosis of epilepsy can be a signi
of worries.
Asking the patient if they have any concerns before beginning your explanation allows you to speci
relevant to the patient, placing them at the centre of the explanation. The “ICE” (ideas, concerns and expectations) format can
provide a useful structure for exploring this area further.

ICE

Ideas\:
What does the patient think is causing their symptoms?
What is their understanding of the diagnosis?
Concerns\:
What are the patient’s concerns regarding their symptoms and diagnosis?
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Expectations\:
What is the patient hoping to get out of the consultation?

Explanation

After determining the patient’s current level of understanding and concerns, you should be able to explain their condition
clearly. Epilepsy can be confusing to medical students and doctors, let alone patients. Avoid medical jargon so as not to
confuse your patient.
You should begin by signposting what you are going to explain to give the patient an idea of what to expect.
“ I’ m g o i n g t o b e g i n b y t a l k i n g a b o u t h o w o u r b r a i n s n o r m a l l y w o r k , t h e n I w i l l m o v e o n t o e x p l a i n w h a t e p i l e p s y i s , w h a t m a y
c a u s e i t , a n d h o w w e c a n b e s t m a n a ge i t i n a w a y t h a t
”
Epilepsy can occur at any age, from birth to late adulthood. You will need to tailor your explanation to the age of your patient,
and because this is often a disorder of childhood, you should be comfortable explaining this diagnosis to parents as well.
Tip\: Use the mnemonic “Normally We Can Probably Manage” to help you remember the structure of explaining a disease.

Normal anatomy/physiology

“ O u r b r a i n c o n t r o l s h o w w e m o v e , w h a t w e s a y a n d d o , o u r m e m o r i e s a n d e m o t i o n s , a n d h o w w e s e e , h e a r a n d f e e l t h i n g s . I t
d o e s a l l o f t h i s t h r o u g h m a n y a r e a s t h a t t a l k t o e a c h o t h e r u s i n g s p e c i a l s i gn a l s t o c o o r d i n a t e a l l o f t h e t h i n gs t h a t w e d o d u r i n g
t h e d a y . D i
t h a t m o m e n t .
”
Make sure to explain the basic sensory and motor functions of the brain, as both can be involved in either a patient’s aura or
how their seizure presents\:
“ I t’ s i m p o r t a n t t o k n o w t h a t t h e s e s i gn a l s c a n go t w o w a y s ; w h e n w e a r e r e c o g n i z i n g h o w t h i n gs a r o u n d u s f e e l , l o o k , s o u n d ,
s m e l l o r t a s t e , s i g n a l s g o f r o m t h e o u t s i d e w o r l d t o o u r b r a i n , a n d e n d u p i n t h e a r e a o f o u r b r a i n t h a t r e c o g n i z e s t h a t p a r t i c u l a r
s i g n a l ( f o r e x a m p l e , o u r b r a i n h a s a s p e c i a l a r e a f o r v i s i o n ) . T h e o t h e r d i r e c t i o n i s u s e d w h e n w e w a n t t o d o s o m e t h i n g l i k e
m o v e , a n d t h e a r e a f o r t h a t w i l l s e n d s i g n a l s o u t t o o u r b o d y ( f o r e x a m p l e , i f w e w a n t t o w a v e t o s o m e o n e , w e h a v e a s p e c i a l
b r a i n a r e a t h a t s e n d s s i g n a l s t o a l l t h e m u s c l e s i n o u r a r m s t o m a k e t h e m o v e m e n t ) . B a s i c a l l y , w h e n a c e r t a i n a r e a o f t h e b r a i n
i s n e e d e d , i t a c t i v a t e s a n d s e n d s s i g n a l s o u t t o o u r b o d y t o d o i t s j o b . W h e n a n a r e a o f t h e b r a i n i s n o t r e q u i r e d f o r a t a s k , i t
b e c o m e s l e s s a c t i v e .
”
2

What is epilepsy?

“ E p i l e p s y i s a c o n d i t i o n t h a t a
e p i l e p t i c s e i z u r e s . T h e r e a r e d i
”
3

What is a seizure?

“ A s e i z u r e i s a n e v e n t t h a t o c c u r s w h e n t h e r e i s a c h a o t i c b u r s t o f s i gn a l l i n g t h a t i n t e r f e r e s w i t h t h e b r a i n' s n o r m a l f u n c t i o n ,
r e s u l t i n g i n e p i l e p s y s y m p t o m s . M o s t s e i z u r e s o n l y l a s t a f e w s e c o n d s t o o n e m i n u t e . S o m e p e o p l e h a v e w a r n i n g s i gn s b e f o r e
t h e y e x p e r i e n c e a s e i z u r e . T h i s p r e-w a r n i n g i s c a l l e d a n a u r a a n d c a n b e a n y t h i n g f r o m a s o u n d y o u h e a r , a w a r m f e e l i n g i n y o u r
s t o m a c h , a s m e l l o r a n y o t h e r t y p e o f s e n s a t i o n .
”
3
You can tailor your explanation to the type of seizure the patient experiences (e.g. generalized vs partial, simple vs complex,
absence, myotonic, tonic-clonic)\:
“ W h e n s o m e o n e h a s a s e i z u r e , t h e y m a y l o s e c o n s c i o u s n e s s , o r t h e y m a y s t a y a w a k e d u r i n g i t . T h e s y m p t o m s o f a s e i z u r e
d e p e n d o n t h e a r e a o f t h e b r a i n a
c o n t r o l s y o u r l e f t l e g , y o u m a y r e m a i n a w a k e b u t n o t i c e t h a t y o u r l e f t l e g b e gi n s s h a k i n g a n d m o v i n g u n c o n t r o l l a b l y . I f t h e
s e i z u r e t h e n s p r e a d s t o a
a s e i z u r e , y o u m i g h t b e v e r y t i r e d , c o n f u s e d a n d n e e d s l e e p t o r e c o v e r . F u l l r e c o v e r y t y p i c a l l y h a p p e n s w i t h i n s e v e r a l h o u r s .
”
1

What is the cause of epilepsy?

“ E p i l e p s y d o e s n o t h a v e o n e s p e c i
c a u s e d b y e v e n t s t h a t h a p p e n b e f o r e y o u a r e e v e n b o r n o r d u r i n g t h e p r o c e s s o f b i r t h . E p i l e p s y c a n d e v e l o p l a t e r i n l i f e a s a
r e s u l t o f h e a d i n j u r y , i n f e c t i o n , b r a i n t u m o u r o r a s t r o k e . I n m a n y c a s e s , h o w e v e r , t h e c a u s e o f e p i l e p s y r e m a i n s u n k n o w n .
”
4
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“ T h e r e a r e c e r t a i n c i r c u m s t a n c e s a n d s u b s t a n c e s t h a t i n c r e a s e t h e r i s k o f p e o p l e w i t h e p i l e p s y h a v i n g a s e i z u r e a n d w e c a l l
t h e s e t r i g g e r s . S o m e e x a m p l e s o f t r i g g e r s i n c l u d e h e a v y a l c o h o l u s e , d e h y d r a t i o n , l a c k o f s l e e p , u s e o f c e r t a i n m e d i c a t i o n s ,
r e c r e a t i o n a l d r u g s , f e v e r s ,
”
4

Complications of epilepsy

Outlining potential complications of epilepsy is necessary so that the patient can recognise problems early and take
appropriate action. This information needs to be delivered in a sensitive manner. Being aware of common problems will
encourage patients to adhere to their treatment and remain vigilant for red
attention.
It is important not to scare the patient, but to explain that you are outlining the potential risks so that they are aware of them.
Risks and the necessary modi
complications explain that you and the patient will need to work together as a team to reduce the likelihood that they’ll occur.
Impact on life
“ B e c a u s e a s e i z u r e c a n h a p p e n a t a n y t i m e , y o u s h o u l d c o n s i d e r a v o i d i n g a c t i v i t i e s t h a t p u t y o u a t a n i n c r e a s e d r i s k o f i n j u r y i f a
s e i z u r e w e r e t o o c c u r , s u c h a s t a k i n g b a t h s o r s w i m m i n g a l o n e , o r a c t i v i t i e s l i k e m o u n t a i n c l i m b i n g o r s k i i n g . I f y o u r s e i z u r e s a r e
n o t c o n t r o l l e d , y o u w i l l a l s o h a v e t o a v o i d d r i v i n g b y l a w u n t i l o n e y e a r p a s s e s w i t h o u t a s e i z u r e . Y o u m a y f a l l a n d i n j u r e y o u r
h e a d d u r i n g a s e i z u r e ; y o u n g c h i l d r e n o r i n d i v i d u a l s w i t h f r e q u e n t s e i z u r e s m a y b e e n c o u r a ge d t o w e a r a h e l m e t t o p r o t e c t
a g a i n s t t h i s .
”
5
Status epilepticus
“ I f p r o l o n g e d s e i z u r e a c t i v i t y o c c u r s w i t h o u t r e c o v e r y , t h i s i s k n o w n a s ‘ s t a t u s e p i l e p t i c u s’
. S t a t u s e p i l e p t i c u s i s a m e d i c a l
e m e r g e n c y t h a t c a n r e s u l t i n p e r m a n e n t b r a i n d a m a ge i f n o t r e c o gn i s e d a n d t r e a t e d p r o m p t l y . Y o u s h o u l d i n f o r m f a m i l y a n d
f r i e n d s i f y o u a r e c a r r y i n g a n e m e r ge n c y m e d i c i n e t h a t t h e y c a n g i v e y o u , u s u a l l y i n y o u r m o u t h , i f s t a t u s e p i l e p t i c u s o c c u r s ,
a n d t h e y s h o u l d b e a w a r e o f t h e n e e d t o s e e k i m m e d i a t e m e d i c a l a t t e n t i o n .
”
6
Sudden unexplained death in epilepsy (SUDEP)
“ I n r a r e i n s t a n c e s , p e o p l e w i t h e p i l e p s y m a y d i e s u d d e n l y f o r r e a s o n s t h a t a r e u n e x p l a i n e d , o f t e n d u r i n g s l e e p o r w h e n n o o n e
e l s e i s a r o u n d . T h i s m a y o c c u r d u r i n g o r a f t e r a s e i z u r e . T h i s o n l y h a p p e n s t o a b o u t 1 i n e v e r y 1 0 0 0 p e o p l e w i t h e p i l e p s y p e r
y e a r , h o w e v e r , i t i s i m p o r t a n t t o b e a w a r e o f t h i s a s y o u c a n d e c r e a s e y o u r r i s k b y t a k i n g y o u r m e d i c a t i o n s a s p r e s c r i b e d a n d
c h e c k i n g i n w i t h y o u r d o c t o r i f y o u r s e i z u r e s a r e n o t u n d e r c o n t r o l .
”
6
Side e
You should inform the patient of the relevant side e
“ Y o u m a y e x p e r i e n c e s o m e s i d e e
m e d i c a t i o n t h a t h a s b e e n c h o s e n f o r y o u , b u t m a y i n c l u d e f a t i gu e , d e p r e s s i o n , n a u s e a , v o m i t i n g, d i z z i n e s s , a n d s l e e p
d i s t u r b a n c e .
”
7
If the patient is a woman of childbearing age, it is essential to make them aware of the impact speci
on fetal development and the importance of e
“ T h e s e m e d i c a t i o n s m a y a l s o a
i m p o r t a n t t o u s e a n e
a l a t e r d a t e , y o u s h o u l d s p e a k w i t h y o u r d o c t o r a b o u t t h i s , s o y o u r m e d i c a t i o n s c a n b e r e v i e w e d a n d p o t e n t i a l l y c h a n ge d t o
r e d u c e t h e r i s k o f d e v e l o p m e n t a l a b n o r m a l i t i e s w h i l s t e n s u r i n g y o u r s e i z u r e s r e m a i n w e l l c o n t r o l l e d .
”
6
“ Y o u m a y n e e d t o t r i a l m o r e t h a n o n e m e d i c a t i o n t o
e
”

Management

The goal of epilepsy management is to reduce the frequency of seizures as much as possible with minimal side e
Explain to the patient that there are steps they can take in their own life, and there are also things you will do as their doctor.
You should also explain that they will need to see you (or if necessary, a neurologist) regularly to ensure compliance and
success with their current treatment regimen.
“ T h e p r i m a r y g o a l o f t r e a t i n g y o u r e p i l e p s y i s t o r e d u c e t h e n u m b e r o f s e i z u r e s y o u e x p e r i e n c e . I t m a y t a k e s o m e t i m e t o
o u t w h a t w o r k s f o r y o u , a n d w e w i l l w o r k t o ge t h e r t o o p t i m i z e y o u r t r e a t m e n t t o a l l o w y o u t o l i v e y o u r l i f e a s n o r m a l l y a s
p o s s i b l e .
”
Pharmacological
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All patients diagnosed with epilepsy will be prescribed an anti-epileptic drug to take regularly to control their seizures. The
choice of medication will be made based on age, sex, seizure type or epilepsy syndrome, and other medical comorbidities.
Sometimes more than one is needed to achieve optimal seizure control.
8
“ I t i s e x t r e m e l y i m p o r t a n t t o t a k e y o u r e p i l e p s y m e d i c a t i o n a s p r e s c r i b e d . Y o u m a y a l s o b e g i v e n a n e m e r ge n c y m e d i c a t i o n i n
t h e f o r m o f a s m a l l p a c k e t o f g e l , t h a t s o m e o n e c a n s q u i s h o u t i n t o y o u r c h e e k i f y o u a r e h a v i n g a v e r y l o n g s e i z u r e .
”
8 ,9
Non-pharmacological
“ I n a d d i t i o n t o t h e m e d i c a t i o n , y o u c a n c h o o s e t o m a k e s o m e l i f e s t y l e c h a n ge s t h a t c o u l d r e d u c e y o u r r i s k o f h a v i n g s e i z u r e s .
T h e s e i n c l u d e m a k i n g s u r e y o u g e t e n o u g h s l e e p , a v o i d i n g a l c o h o l a n d r e c r e a t i o n a l d r u g s , a n d m a n a gi n g y o u r s t r e s s . Y o u m a y
n o t i c e s o m e t h i n g i n y o u r l i f e t h a t m a y t r i gg e r y o u t o h a v e s e i z u r e s , a n d i f y o u d o , i t i s i m p o r t a n t t o a v o i d t h i s w h e r e v e r p o s s i b l e .
I n a d d i t i o n , y o u m i g h t n o t i c e y o u g e t a w a r n i n g s i g n , k n o w n a s a n a u r a , b e f o r e y o u h a v e a s e i z u r e . T h i s c a n b e h e l p f u l a s y o u
c a n s i t o r l i e d o w n i f p o s s i b l e a n d a l e r t s o m e o n e n e a r b y .
”
5
Friends & family education
“ Y o u m a y
i n c l u d e s s u p p o r t i n g y o u r h e a d a n d t u r n i n g y o u o n t o y o u r s i d e i f y o u f a l l t o t h e gr o u n d , t i m i n g t h e s e i z u r e , a n d c a l l i n g
e m e r g e n c y s e r v i c e s i f t h e s e i z u r e l a s t s m o r e t h a n 5 m i n u t e s o r i f y o u i n j u r e y o u r s e l f d u r i n g a s e i z u r e . I f y o u c a r r y e m e r ge n c y
m e d i c a t i o n , y o u c a n i n s t r u c t t h e m o n w h e r e y o u k e e p i t a n d h o w t o gi v e i t t o y o u . Y o u c a n a l s o t e l l t h e m w h a t t h e y c a n e x p e c t
a f t e r y o u h a v e a s e i z u r e , s u c h a s b e i n g g r o ggy o r c o n f u s e d .
”
1 0
Refractory epilepsy
Alternative approaches for refractory epilepsy may include\:
11
Epilepsy surgery to remove the seizure foci
Ketogenic diet
Vagus nerve stimulation
Deep brain stimulation

Closing the consultation

Summarise the key points back to the patient.
O
use to gather more information (examples include Epilepsy Society and NHS.uk).
“ W e h a v e d i s c u s s e d q u i t e a l o t t o d a y , i n c l u d i n g w h a t e p i l e p s y i s , i t s c o m p l i c a t i o n s a n d h o w w e c a n w o r k t o ge t h e r t o m a n a g e i t .
I r e a l i s e t h i s i s a l o t o f i n f o r m a t i o n t o t a k e i n , b u t I d o h a v e s o m e l e a
e n c o u r a g e y o u t o s e e k s u p p o r t f r o m f a m i l y o r f r i e n d s w h o c a n k n o w w h a t t o d o i f y o u h a v e a s e i z u r e , a n d w h e n y o u r e q u i r e
e m e r g e n c y m e d i c a l a t t e n t i o n . I t' s i m p o r t a n t t h a t y o u a t t e n d y o u r f o l l o w-u p a p p o i n t m e n t s , s o w e c a n c h e c k i n o n h o w y o u' r e
m a n a g i n g a n d m a k e a d j u s t m e n t s w h e r e n e c e s s a r y .
”
Ask the patient if they have any questions or concerns that have not been addressed.
“ I s t h e r e a n y t h i n g I h a v e e x p l a i n e d t h a t y o u’ d l i k e m e t o go o v e r a g a i n ?”
“ D o y o u h a v e a n y o t h e r q u e s t i o n s b e f o r e w e
Arrange appropriate follow-up appointment to discuss their epilepsy further.
Thank the patient for their time.
Dispose of PPE appropriately and wash your hands.

References

1. NHS. Epilepsy – S y m p t o m s . 18 September 2020. Available from\: [LINK]
2. MayLINK]
3. NHS. E p i l e p s y – O v e r v i e w . 18 September 2020. Available from\: [LINK]
4. NHS. C a u s e s o f e p i l e p s y . 13 July 2011. Available from\: [LINK]
5. NHS. Living w i t h e p i l e p s y . 18 September 2020. Available from\: [LINK]
https\://app.geekymedics.com/osce-guides/counselling/epilepsy-counselling/ 5/611/13/24, 8\:17 PM Guide | Epilepsy counselling
6. Epilepsy Society. R i s k s w i t h e p i l e p s y . May 2019. Available from\: [LINK]
7. Epilepsy Foundation. C o m m o n a n d r a r e A E D s i d e e LINK]
8. UpToDate. Overview o f t h e m a n a g e m e n t o f e p i l e p s y i n a d u l t s . 16 September 2020. Available from\: [LINK]
9. Great Ormond Street Hospital for Children, NHS. B u c c a l ( o r o m u c o s a l ) m i d a z o l a m . December 2017. Available from\: [LINK]
10. Epilepsy Action. W h a t t o d o i f s o m e o n e h a s a s e i z u r e . July 2020. Available from\: [LINK]
11. NHS. E p i l e p s y – T r e a t m e n t . 18 September 2020. Available from\: [LINK]
Source\: geekymedics.com
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