24th to the 30th May is National Epilepsy Week which aims to raise awareness of what epilepsy is, who can be affected and what can be done to support them.

Epilepsy is a condition that affects the brain and causes people to have recurring seizures. Electrical activity is happening in our brain all the time – this is how the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain which disrupts the way the brain works and the brain’s messages. Seizures can affect people in different ways, depending on which part of the brain is involved. Symptoms can include:

  • uncontrollable jerking and shaking
  • a sudden stiffness or tension in the muscles of the arms, legs or torso
  • losing awareness and staring blankly into space
  • strange sensations
  • collapsing
  • passing out and not remembering what happened.

Read our beneficiary stories to find out how POhWER can support people with epilepsy to uphold their rights and have their voices heard.

Iris’ story

Iris is 60 years old and has dementia and epilepsy. She has been living at a care home for three years. During an epileptic seizure Iris fell and injured her wrist.

At her next Deprivation of Liberty Safeguards (DoLS) assessment, Iris told her assessor that she wanted to move to different accommodation.

A DoLS Assessment takes place when a person who has dementia and is at a care home or hospital is, or will be, deprived of their liberty. The assessment checks that the person and the care that they are receiving meets the criteria for a Deprivation of Liberty Authorisation.

The DoLS Assessor agreed to review Iris’s placement within the next 6 months. Keith, A POhWER Relevant Paid Persons Representative (RPPR), was appointed to support Iris with this as none of her relatives are involved in her care.

Keith provided remote support to Iris via the telephone as they could not meet face-to-face due to Covid-19 restrictions. He explained her rights under the DoLS and then asked her about the care home and her wish to move. Iris expressed that she likes the care home but said she wants to move because she wants more independence and privacy. She said if she could she would like to live independently. Overall Iris spoke positively about the staff and care given to her at the care home.

Keith asked what could be done to improve her life at the care home. Iris told him that she was unhappy about having to use communal bathroom facilities as she had to use the bathroom next-door to a male resident’s room. Iris said this resident always had his room door open and said he was an unpleasant person who always shouted at her when he saw her. This made her feel anxious and not want to visit the bathroom. She also said that when she feels anxious it can trigger a seizure.

Keith explored with Iris whether she would still want to move if she could have en-suite bathroom facilities provided to her. Iris said that in the three years she had been at the home, she had never had her own bathroom and toilet but if she had then she would be happy to stay there.

Keith passed this information on to her social worker and the DoLS Assessor.

It was decided that Iris can move rooms and will have her own en-suite toilet and showering facilities. She is very happy about this and no longer wishes to move to different accommodation. By supporting Iris to raise her wishes about having her own facilities Keith has helped her uphold her right to privacy under Article 8 of the Human Rights Act 1998.

Kamelya’s Story

Kamelya has a learning disability and epilepsy. She lives in a care home. She has 3-4 seizures a month so she has a sensor mat on her preferred chair and in bed to alert staff should she need assistance.

The home Kamelya lived in was due to deregister and become supported living accommodation. A best interest’s decision meeting had been arranged to decide whether supported living would be suitable for Kamelya or whether she should move to an alternative care home. Kamelya’s social worker had assessed her to lack capacity to make this decision and Kamelya had no family or friends involved in her life. A referral was made for a POhWER independent Mental Health Advocate (IMCA) to support her. Greg, a POhWER IMCA was assigned as Kamelya’s advocate.

Kamelya needs supervision and prompting with personal care and occasional hands on support. She likes to help with household chores such as hoovering the lounge and cleaning the dining tables after meals. The staff at the care home said that the change in registration would have little effect on the care and support Kamelya received. But it was expected that there would be a reduction in care hours. Kamelya is quite independent in some aspects of her life and therefore they did not think a reduction in care hours would negatively impact her.

Greg met with Kamelya and asked her about living in the care home. She was able to tell him how she liked to spend her day. Kamelya was adamant that she did not wish to move. She also discussed some of her health issues with Greg. Kamelya was not able to demonstrate any understanding of the impact that a change in registration would have but did appear to comprehend that a lot would change for her if she was to move.

Greg raised Kamelya’s wish to remain at her current care home at the best interest meeting. The best interest meeting concluded that it would be in Kamelya’s best interests to remain living in her current accommodation after it had changed to supported living. This was based on the fact that she is independent to a degree and is able to exercise some level of choice and control over her life, also bearing in mind her wishes and the possibility that a change of accommodation could be very distressing for her.

Greg was able to ensure Kamelya’s rights were upheld under the Mental Capacity Act 2005 and her right to freedom of expression under the Human Rights Act 1998.

Lowena’s Story

Lowena contacted POhWER for support with getting access to health and social care services. Lowena is an alcoholic and has epilepsy and clinical depression. She is currently homeless within the London borough of Hillingdon.

Liam, a POhWER advocate, contacted Lowena. Lowena explained her circumstances and asked for Liam’s help to access a GP, mental health treatment and Arch – drugs and alcohol rehabilitation services. Lowena wanted to change her life around and was desperate for a change but she didn’t know where to start and was finding it difficult liaising with professionals as she felt her voice was not being heard.

Liam explained that it would be best to make the referral to Arch first as mental health services would not accept Lowena while she was an alcoholic. Liam contacted Arch and put in a referral for her. Arch scheduled a meeting with Lowena for the following week for an assessment

Liam informed Lowena of what to expect in relation to the proposed assessment. Lowena expressed that she would like Liam to come to the assessment with her and support her in the assessment to raise her concerns. She believed this would give her the confidence and empowerment needed.

Liam met Lowena at Arch before her appointment and they noted down her concerns and things she wanted to ask. Lowena was pleased with this, as it allowed her the time to organise her thoughts and think about what she wanted to say.

Liam supported Lowena in the assessment and made notes. With Liam’s support, Lowena felt empowered to ask the questions she wanted to ask. Lowena was offered immediate treatment to start her detox which Lowena was happy to engage in.

Going forward, Lowena was able to use Arch as her main address so she could register with a GP, where she was prescribed medication for her epilepsy. This was a great outcome for Lowena and meant she had more control of her illness and wellbeing.

Lowena was pleased with the support she received from Liam and would continue to work with him to access support with other issues affecting her.