Encephalitis follow-up in primary care settings

We are honored to have friends at the Encephalitis Society in the UK, who provide support for the community of people who have experienced all types of encephalitis. Chief Executive, Dr. Ava Easton, has recently published an article entitled “Treating encephalitis in primary care settings” in the Independent Nurse. She provided a summary of the two main types of encephalitis, infectious and autoimmune and discussed some of the challenges encephalitis survivors may experience.

Ava stated many patients make a full or nearly complete recovery, but unfortunately many do not. Long-lasting effects can be seen with an acquired brain injury (ABI) that include problems with cognition, emotional control, behavior and physical functioning. These may not become apparent until the person attempts a return to school or work, and may have far-reaching social and occupational implications that greatly compromise quality of life. She also stated these “hidden” impairments may be overlooked in encephalitis survivors who may not have the more obvious physical challenges of stroke or TBI survivors. This can lead to discharge from the hospital without the recognition of their long-term needs.

Although healthcare systems vary widely throughout the world, at the AE Alliance we have heard many stories that support these conclusions. Some AE survivors struggle with symptoms as they try to re-enter the workplace or children as they return to school.  Dr. Easton recommended neuropsychological testing in order to identify deficits and receive proper therapy. She stated it may fall to primary care practitioners to refer patients.

At the AE Alliance, we inform survivors and their families that if a neuropsychologist is not available locally,  occupational therapists, speech therapists, psychiatrists, school counselors and psychologists may be of assistance. We encourage caregivers to be persistent in advocating for their loved ones to receive the needed rehabilitation. Thankfully long-term outcome studies by physicians are beginning to address these issues and will lead to greater awareness and increased resources for patients.

An excerpt of the article may be read here. Many thanks to Dr. Ava Easton for all her hard work at the Encephalitis Society and for sharing the manuscript with us.