Encephalitis means inflammation of the brain substance. There are different causes, and in approximately a third of patients, a cause is not found despite medical staff doing the right investigations. It is a serious disorder and unfortunately, despite the improvements in specific and more supportive treatments such as excellent intensive care management, Encephalitis still has a high mortality (death) rate.
Some types of Encephalitis can be treated with either specific anti viral treatments or immunomodulatory drugs (for example steroids or intravenous immunoglobulin) but even with the right treatment certain types of Encephalitis have mortality rates of between10 to 30%. Some forms of Encephalitis are more severe than others. For example,
Herpes Simplex Virus Encephalitis (HSE) has mortality rate of up to
30% with specific anti-vital treatment, and 70-80% without the treatment.
When death happens it is usually because of brain swelling caused by

severe inflammation. The brain is wrapped in a bony shell (the skull) and when it swells it pushes downwards onto the brainstem. The brainstem is the part of the brain that controls the vital functions of breathing and circulation. When the brainstem is under this type of a severe pressure it stops to function.
The rapid course of Encephalitis can be traumatic and overwhelming.
The realisation that 21st century drugs and medical management and sophisticated equipment are sometimes unable to treat the disease successfully is frightening. Families who suffer a bereavement are often left feeling shocked and traumatised.
Death is always difficult for those who are left behind, but even more difficult when it is totally unexpected. There are a number of sources of help for families in grief and literature is available on the subject, some of these are listed below.
We have specific staff at the Encephalitis Society who can talk through any issues that family and friends may have, and, if appropriate put bereaved families in touch with each other. Such sharing of difficult experiences is known to help the grieving process.
Organisations that may be able to help:
The Compassionate Friends
This organisation gives support to parents whose son or daughter has died.
Contact Details:
Address: 53 North Street; Bristol BS3 1EN
Helpline: 0117 953 0630
Website: www.tcf.org.uk

Ruby Care Foundation
The Ruby Care Foundation is an international educational charity which was founded by people with a wealth of different kinds of hands-on experience, who care deeply about end-of-life issues. They offer care, counselling and support to those approaching their time of departure from this life and to those in grief from the loss of a loved one.
Contact Details:
Address: PO Box 21; Llandysul; SA39 9WA; Wales
Website: www.rubycare.org
Tel - +44 (0) 560 329 5121
Cruse Bereavement Care -
This organisation provides a nationwide service of bereavement counselling, advice, information and social contact through its headquarters and more than 196 local branches, to anyone bereaved by death irrespective of age, race, religion, gender or sexual preference.
Contact Details
126 Sheen Road
Richmond
Surrey TW9 1UR
Telephone: 020 8940 4818
Website: www.crusebereavementcare.org.uk
FACTS Health Centre
This organisation offers counselling, advice and support if someone has died after being ill from AIDS.
Contact Details
126 Sheen Road
Richmond
Surrey TW9 1UR
Telephone: 020 8348 9195

LGBT Bereavement Helpline
This organisation offers support and advice to lesbians, gay men, bisexuals and transgender people who have been bereaved
Contact Details:
Helpline: 020 7403 5969 (Every Tuesday and Thursday evening, 7.30 to 10pm)
Website: www.londonfriend.org.uk
NABS National Association of Bereavement Services
This organisation helps bereaved people find local services.
Contact Details
Address: 2nd Floor ; 4 Pinchin Street ; London ; E1 6DB
Telephone Helpline 020 7709 9090
You may find helpful reading the following books:
“Through Grief” By Elizabeth Collick and Claire Rayner
ISBN 0232516820
“Facing Grief - Bereavement and the Young Adult 18-28” By Susan
Wallbank
ISBN 0718828070
“The Early Days of Grieving” By Derek Nuttall
ISBN 0906584299
“A Grief 0bserved” By C S Lewis
ISBN 0571066240
“What to Do When Someone Dies” By Paul Harris
ISBN 0852028164
“I Will Remember You: What to Do When Someone You Love Dies:

A Guidebook Through Grief for Teens” By Laura Dower
ISBN 0439139619
“Muddles, Puddles and Sunshine”
An activity book for children to help them deal with the death of someone close.
From: Winston’s Wish, The Clara Burgess Centre, Gloucestershire
Royal Hospital, Great Western Road, Gloucester, GL1 3NN.
Tel: 01452 394377. E-mail: admin@winstonswish.org.uk
“You’ll Get Over It” By Virginia Ironside
ISBN 0140236082
“First Year, Worst Year: Coping with the Unexpected Death of our
Grown-Up Daughter” by Prof. Barbara Wilson, OBE and Michael
Wilson
ISBN: 978-0-470-09359-7

FS063 Death from Encephalitis Page Created: January 1999 /Last
Updated December 2011/ Review date: December 2013
We try to ensure that the information is accurate and up-to-date as possible.
None of the authors of the above document has declared any conflict of interest which may arise from being named as an author of this document.
The authors have used evidence, academic and professional experience in writing this factsheet. If you would like more information on the source material and references the author used to write this page please contact the
Encephalitis Society.