As a Roald Dahl children's epilepsy nurse specialist, my job is allabout advocacy and empowerment for young people with epilepsy. I haverecently been working with a 16-year-old boy with idiopathic generalisedepilepsy. The boy was studying at college and living without the supportof his parents.
He was reluctant to accept his epilepsy and was also experiencing anumber of negative side effects from his medication. Because of this, hestopped taking it and had not taken any for six months. As a result, hehad a prolonged seizure and was admitted to hospital. At this point Iwas called in to talk to him.
I did not want to risk alienating him by insisting that he continuedtaking the medication against his wishes.
But, on the other hand, I knew there could be very serious consequencesif he would not accept his condition.
We discussed his understanding of epilepsy and what lay behind hisdecision to stop taking his medication. We also discussed theimplications of him not taking it and the possible risks. In the end wedecided that he should continue taking the medication but on a lowerdosage to reduce the side effects.
I passed this advice on to the hospital but they appeared to disregardit. He had a run of six seizures over a very short period and felt letdown and anxious. We decided to switch his medication during a holidayperiod when his parents could support him. Fortunately, his collegeoffered excellent pastoral care and the boy's local GP was alsosupportive and offered to see him at any time. We arranged open accessto the ward for a short period in the event of a prolonged seizure.
The new drug appears to be working. The boy is now working well atcollege and is much happier. He is no longer refusing to take hismedication and as a result his seizures are now very rare.
But this situation may not have been reached without the help of otherprofessionals. It allowed me to fulfil my role as educator and advocate,provide accurate and up-to-date information to everyone involved andassist a family in dealing with epilepsy on a day-to-day basis allowingthe boy to live as full a life as possible.
- Have you ever faced a tough professional choice? Call Stovin Hayter on020 8267 4767 or email stovin.hayter@haynet.com.
