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Support for people with epilepsy – Darren’s Story

Using Creative Wellbeing sessions with an individual with PMLD.

All names within this study have been changed to maintain boundaries of confidentiality.


Darren’s Goals

Based on an Assessment of Needs with Darren, an individual with PMLD, and his Circle of Support

Develop communication skills

Improve wellbeing and happiness

Adventure, trying new things

Engaging within a set group session

Issue Encountered

Darren became very sleepy due to necessary medication to control his epilepsy, which meant that he was not able to meet his goals of developing, engaging and being happy and well.

Measures Put in Place

Measures Put in Place

After consultation with Darren’s circle of support, our team developed the following measures for his Creative Wellbeing sessions:

  • Calm, sensory activities that could be engaged in when sleepy, using eye gaze and touch to promote happiness, wellbeing and engagement
  • A focus on intensive interaction to promote communication and connection between the facilitator and client, in a way that used less resources and physical energy, so it could be achieved while sleepy/tired. For example, soft singing, small movement mirroring, touching hands, breathing together etc.
  • Shorter sessions with plenty of breaks so that Darren can conserve energy, sleep if he needed too and generally have some comfort time.
  • Close contact with Darren’s circle of support (family, doctors, social workers) to make sure we are aware of any medication changes and their effects. We worked together to explore all options available and to make sure that the medication given was the best possible solution in Darren’s circumstance.

Results

Intensive interaction also worked very effectively when Darren was tired, as he could use just eye contact when very tired to make a connection, minimising his isolation.

Results

Through our feedback to Darren’s family, and by extension to his doctors, the medication was deemed too high a dose, which explained why Darren was feeling sleepy/tired/low energy. This was then amended slightly to a lower dose and Darren became more awake, engaged, happy and sociable.

Intensive interaction also worked very effectively when Darren was tired, as he could use just eye contact when very tired to make a connection, minimising his isolation. This made him feel happier, smile/laugh more, and these effects were also noticed at home.

Shorter activities within sessions also worked well to help Darren stay awake for longer and try new things/have fun. Darren then again seemed happier and had more energy.