Lucy – Preventing Improper Treatment

  • Epilepsy
  • Reducing Hospital Care
  • Seizures
  • Transfer of Care

When you are not aware of the situation but you want your voice heard it can be tricky to get the care you want and not have the care you do not want. It is the case that people have a right to choose – they also need to be heard. 

Lucy has epilepsy and a learning disability. Sometimes people do not listen and sometimes Lucy cannot communicate. Lucy regularly has a wide range of different  epileptic fits. Her key worker and her carer know which type of seizure is on its way a few minutes before it impacts. 

Lucy likes to be prepared as all too often she has not received the care she knows works for her and it is delivered in a way that makes her feel undignified and she wants to have her voice heard. Lucy got Hear Me Now (HMN) on her tablet. She thought about typing all the different information about her fits in the About Me section but decided to create a box all about her epilepsy. In the box she decided with her carer that she would video Lucy in different stages of each of the different types of seizure, and then describing for each type how she wanted to be treated – making her voice heard. All the information is stored in Lucy’s Epilepsy box in HMN. 

Lucy regularly attended day services. One day she had a seizure, her carer was with her. The day services provider was shown the video Lucy had made about how she wanted to be cared for and an ambulance was called. The paramedics on arrival assessed Lucy and were also shown the video.  They took Lucy and the carer to the nearest A&E where the team received Lucy, had a handover with the ambulance crew who took the A&E staff through the information on HMN. The A&E staff did what Lucy wanted and soon after they were happy she was stable and recovering Lucy was able to show to all that she had recovered and was able to leave A&E the same afternoon. 

Lucy was able to have her voice heard throughout although she had not always been conscious, the care provided was efficient and safe helped by the information being on the device and the paramedics using HMN as a part of the handover process. Treatment was provided to Lucy’s instructions and she was released from A&E with the team knowing she knew what she was doing. Lucy didn’t have the overnight stay at hospital she had been used to previously when she had a seizure, saving precious hospital bed space. 

Hear Me Now helps Lucy to

  • Communicate what she wants in the way that she wants
  • Manage her seizures in her preferred way as agreed with health staff
  • Avoid inappropriate medical treatment
  • Maintain her dignity
  • Manage her transfer of care every step of the way
  • Avoid hospital admission

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