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National Epilepsy Week – Rosie’s Story

Living with Epilepsy – Getting to Know You

Rosie is a beautiful young lady who has lived at one of our supported living services for people with learning disabilities for numerous years. Rosie was diagnosed with epilepsy from a young age.

Rosie’s seizures would come on suddenly and she had no way of telling staff when she was about to have a seizure.  The number of incidents where Rosie became hurt during a seizure were high. Rosie also has autism. She is sensitive to touch and would not allow anyone near her. Therefore, she would not wear head equipment to keep herself safe from any injuries during a seizure.

The most difficult aspect for her health care professionals, was that Rosie refused all medical tests making it hard for the professionals to trial and test the most effective medication for her. Rosie would display a high level of challenging behaviour when attending these appointments and required 2:1 support. Rosie would display similar behaviours during personal care.

A pool of selected staff were put together to provide Rosie with 1:1 support, spending time with her and getting to know her patterns, habits, facial expressions and body language. Detailed guidelines were put in place for all staff to follow.  This also helped Rosie as all staff were up to date with her set routines, preferences and dislikes. These behaviours were closely linked to her autism. Staff realised that when these established routines were followed, it decreased the incident levels.

Where Rosie was less stressed staff saw a reduction in her seizures before any changes were made to her medication. Over the years Rosie has bonded with her staff team and is affectionate towards them. Staff have got to know when Rosie wants to be left alone or identify her triggers. By doing this, staff are able to eliminate the triggers before escalation thus preventing incidents.

Over the years the staff team have also worked very closely with the Epilepsy Consultant and Nurse from Queens Hospital in Romford resulting in trialling different medications. This worked really well.  From 2016-18, Rosie was having over 50 seizures a month. By September 2018, she had two seizures in the whole month and four in October.

On the contrary, staff noticed that once Rosie gets used to the medication the seizure activity gradually increases. As the staff team have become familiar with the signs or symptoms just before the seizure, they have been able to adapt their support to prevent Rosie from becoming injured during seizures. She has continuous 1:1 support to help her manage the risks of seizures. These 1:1 hours have been vital to keeping her safe as the staff are able to pick up the signs before seizures, ensure she is safe from potential injuries, time the seizures, administer the correct drugs, and know when to call for an ambulance. Without this support Rosie’s life is at risk.

The support that Rosie receives to help manage her seizures has helped to keep her safe. Without the detailed recordings and quick staff response the team would not have seen a reduction in her seizures. Although the seizure activity has increased again, overall they are reducing when compared to 2016’s results, which is great news.