Epilepsy is a serious neurological condition involving recurrent seizures which begin in the brain. Like other chronic conditions, epilepsy can impact substantially on daily life, and the challenges it brings may include social, financial, cognitive and emotional factors.
Self- management is, “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition” (Barlow et al, 2002). Self-management practices are recommended for a range of conditions and may be particularly important to people with epilepsy, who tend to have little formal NHS contact, who may lack understanding of this complex condition and who are prone to medication lapses. However – in contrast to other chronic conditions – there was no specialist support helping people with epilepsy to self-manage.
To rectify this, Epilepsy Action worked collaboratively with a group of health specialists and people with the condition to produce a virtual self-management programme, “Epilepsy and you”, which launched in May 2017. The course is the most comprehensive of its type for epilepsy in the UK and the quality of its content is assured under NHS England’s Information Standard. Over 8 modules, taking 16 hours in total, participants build medical knowledge and understanding along with skills and confidence in handling issues such as safety, travel and independence, feelings, memory, sleep and stress, work and relationships, and medication use. Participants are encouraged to set goals and to connect with peers on an online forum to share experiences.
An early evaluation by Coventry University has shown that the course improves knowledge, confidence and skills; it also found a reduction in social isolation among participants. Feedback helps to illustrate the improvement to quality of life. One participant said the course had brought him, “Better sleep and going back to being my happy, positive self – something that has been missing since I experienced my first seizure nearly seven years ago.” Another commented, “I am thinking more positively and am just trying to be me again, and not that man with epilepsy.”
The Pixel Fund has grant-funded 100 free places on “Epilepsy and you”, helping people with epilepsy to learn self-management techniques and in doing so to have a better quality of life. The impact of the course on health and wellbeing is being formally evaluated by Coventry University, covering areas such as patient activation, depression and anxiety, quality of life and medication adherence. The results of this evaluation will be shared with NHS commissioners, with a view to promoting the role self-management can play in the health and wellbeing of people with epilepsy.