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Case study

Involving patient groups to provide support and information in the care of rare conditions

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Encephalitis can have devastating effects on families and patients. During recovery, it is essential to direct patients to organisations that can offer specialist support

Key words Herpes Simplex Virus, Encephalitis, Support groups

  • This article has been double-blind peer reviewed


Encephalitis is inflammation of the brain, most often caused by a virus, or an abnormal immune response. Herpes simplex virus (HSV) encephalitis is the most often diagnosed viral cause in western industrialised nations,  with an estimated annual incidence of 1 in 250,000 to 500,000 (Whitley, 2006). Herpes encephalitis can have the most devastating effect on the patient and their families. It is a serious and life-threatening condition with a high mortality and significant long term disability in survivors (Hjalmarsson et al, 2007).

However, because the condition is relatively rare, many patients have not heard of it, and many hospital doctors and nurses know little about it, meaning the care they provide can be suboptimal. Here we describe a case in which referral to the appropriate patient support group made a real difference.


Joseph(not his real name) was an average 21 year old. He worked as a mechanic Monday to Friday and liked to meet with his friends and his girlfriend at the weekends. Friday night was much like any other, a couple of pints in the local pub and a Saturday morning lie-in to look forward to.

However, on one particular weekend the lie-in lasted the whole day and Joseph found it difficult to shake off what he thought was the effects of the night before. By the Sunday he was feeling even more lethargic and was complaining of a headache and flu like symptoms. On Monday he didn’t go to work and his parents were becoming increasingly concerned as his headache had become severe and his personality had changed.

After a home visit by his GP, Joseph was taken to A&E by his parents. At this point, he was slightly confused and behaving out of character. He was admitted and promptly started aciclovir for the treatment of herpes encephalitis.


Joseph had a CT scan and a lumbar puncture to test his cerebrospinal fluid for the presence of HSV. Treatment with IV aciclovir was continued for three weeks. During this time, he was mostly confused and required some sedation in order to nurse him in a safe environment and to keep his intravenous line in place due to his agitation. His family were upset by his bizarre behaviour. The medical and nursing staff did their best to help, but many of them were unfamiliar with the disease and its effects and this made communication with the family difficult.

This situation improved once the family were put in touch with the Encephalitis Society who were able to explain some of the symptoms such as fever and confusion. The society is a charitable organisation with information on many aspects of this brain infection and is now run by people whose families have been affected and professionals with a specialist interest in encephalitis (


Joseph’s recovery was slow following the completion of aciclovir. The acute phase may be followed by a period of fairly rapid improvement that slows down but continues over the coming months and sometimes years (Easton et al, 2006). The support that Joseph and his family got from the Encephalitis Society and the nursing staff [?of the society] was really important in helping them deal with his sometimes aggressive and un-cooperative behaviour. His family learned that this was out of Joseph’s control and was not directed at them personally.


After almost two months Joseph went home from hospital but still required time to convalesce before having a staged return to work. He tired easily, had difficulty with his short term memory, and sometimes had problems with even the simplest tasks. Remembering peoples’ names and times of day were particularly problematic.  This improved over the following months but required patience and support from his friends and employer, and further input from the Encephalitis Society.

In many cases, the family says that the person they took home with them is not the one they brought to hospital, with changes in personality, irritability and poor short term memory (Solomon et al, 2007).

Though a rare disease, it is crucial to remember that encephalitis can happen at any age and at any time. Some people recover from it without any problems, but for the majority there will be symptoms associated with an acquired brain injury.  For others, the outcome may be fatal.

If we are to provide gold standard nursing care for these patients it is important to understand how the treatment and recovery period can affect the patient and their families. Involving outside organisations is one way of helping them gain support and understanding.

AUTHORS Susan Bennett, Bsc, Msc, is a clinical research nurse, The University of Manchester, Salford Royal Hospital; Julia Granerod, Bsc, Msc, is an epidemiological scientist for The Encephalitis Study, Health Protection Agency – Centre for Infections; Professor Tom Solomon, FRCP, PhD, MRC is a senior clinical fellow, chair of Neuroscience, and director, Institute of Infection, University of Liverpool.

Encephalitis Society Guidelines for Recovery 

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