Complex Epilepsy under control

Thomas enjoys an improved quality of life and independence with far fewer epileptic seizures

Thomas moved to one of our homes in South Essex in 2015 aged 18, having previously been supported by children’s services. The home is a supported living home for adults that supports people with a range of unique and complex needs, including learning disabilities, physical disabilities, autism, and epilepsy. Thomas has severe epilepsy, moderate learning difficulties and several other conditions, including osteoporosis.  

Seizures and falls 

When he first moved to the home, Thomas was experiencing around 3-4 seizures a week. Any of these had the potential to cause him to fall if he was on his feet. Due to his osteoporosis, falls could cause fractures and often resulted in a hospital visit. In the past, Thomas has broken fingers and his arm as a direct result of falling when having a seizure. As he doesn’t use speech and doesn’t react in a typical way to pain or discomfort, it can be difficult for his Support Workers to initially recognise when he has injured himself 

Typically, he also tries to get up quickly after a seizure, not realising how groggy he is.  

Change management 

With a change in medication, Thomas’ seizures have reduced to around one every other month, usually when in bed. Tina Lowe, Practice Lead, says: “We kept a seizure diary for Thomas and worked with the epilepsy nurse and consultant neurologist to find the right medication to control the seizures better. The dose is now effective, and he takes granules rather than liquid of the same type of drug. The new dosage took about a month to take effect, but there has been a marked improvement.” 

Seeking further enhancements for Thomas, the support team has also liaised with the Occupational Therapist to acquire a walking frame for him. This enables Thomas to move about with greater independence as well as giving team members peace of mind. “He has extra stability when he’s moving around now, and he really loves being able to get about more quickly,” says Tina.  

Increased wellbeing 

Another benefit of better-managed epilepsy is that Thomas can go out more often for the day and no longer miss out on a pre-arranged outing or activity with others in the house. When he has a seizure, Thomas recovers in an hour or so; previously, this might have taken several hours for his chronic seizures. 

“We are always looking at ways to improve the lives of people we support,” says Tina. “I’m now trying to secure funding for a special bed for Thomas, which can be lowered to floor level as a precaution. If he should fall out of bed during a seizure, the impact will be minimised. We are also in constant contact with our internal Health & Wellbeing Team to consider other ways in which we can support Thomas’ epilepsy and ensure the environments he spends time in are as safe as possible”. 

Michael Fullerton, Director of Health & Wellbeing said, “We are in a strong position to support people well with complex epilepsy, particularly with our dedicated and nurse-led Health & Wellbeing Team to provide additional advice, bespoke training and competency assessment to our support teams. A key factor in the example here is the collaborative work with the local specialist health team, the relationships the team have built with Thomas, excellent epilepsy treatment and support, and the introduction of a pain recognition tool (Disdat Tool).” 

Find out more about our complex epilepsy support here.