DVDs
Encephalitis - an Information DVD.
This unique resource has been produced by the Encephalitis Society in user friendly
language. It has easily navigable sections that explain what encephalitis is, how
it is diagnosed and treated, how to deal with the problems and difficulties that
follow, and what information and support the Society can provide. The DVD is not
only a useful tool for people affected, their families and friends, but also for
the health, social care and education professionals who support them.
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Books
This 75 page book, written by the Encephalitis Society, provides a comprehensive
guide to the illness.
The Guide covers the illness, the possible consequences of the illness, the specialisms
and services that can help, accessing benefits, returning to work and acknowledges
the needs of the whole family.
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Encephalitis – a parent’s handbook
The Handbook has been compiled by Elaine Dowell with advice and assistance from
Working Together –children and young people, a steering group of the Encephalitis
Society and Beth Wicks, Education Consultant. The project has been supported by
the BBC Children in Need Appeal. The Handbook at over 100 pages is a comprehensive
resource explaining what encephalitis is and directing parents through the maze
of services, from health, social services and education, which are needed to maximize
their child’s recovery. Parents own emotional needs are also acknowledged
and addressed.
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You can download a copy here: Parents Handbook (5mb– please be patient)
Reviews
Molly Bose, parent of a child who had encephalitis
The book has a beautiful feel about it. I am so moved by the wealth of information.
This is a very exciting publication, full of interesting, vital and easy to understand
information. Apart from being a parental guide, it should also be an invaluable
tool for medical and academic institutions. On a very personal note, nearly ten
years on since my daughter Priya was struck by encephalitis, I would not have felt
so helpless and lost had a guide of this nature been available then. My deepest
congratulations to everyone involved.
Dr Ngozi Oluonye, Consultant in Community Child Health
Edwin Lobo Centre, Luton teaching PCT, Bedfordshire, UK
When handed the book for the first time, after I agreed to review it, my first thought
was that it seemed a bulky document which might be rather daunting for a parent
of a sick or recovering child, to read. However, my fears were quickly allayed once
I began to read. The contents pages and chapters are extremely well laid out with
tabs indicating the beginning of different chapters, therefore making it easy for
the reader to flip back and forth, in order to find relevant information. It is
a book that is visually reader friendly. There are clear titles at the top of every
page, with subheadings and bullet points breaking up the fairly detailed and, at
times, rather scientific text. Textboxes are used to summarise definitions of terms
and salient points, with a glossary at end of the sixth and final chapter.
The contents of the book cover the stage of the acute illness in hospital rapidly
taking one through the effects of the illness, with a broad, yet detailed over view
of the effects of encephalitis on the child, the pathway through the services, including
education, and finally fairly extensively exploring the impact of the illness on
the family as a whole.
At the end of the first chapter, is a flow chat which gives a useful over view of
the child’s journey from the initial symptoms of the disease, through admission
to the acute ward or Paediatric Intensive Care Unit, concluding with the discharge
home and rehabilitation in the community. My only criticism of the flow chart is
that whilst doing a great job of simplifying the pathway for parents, it gives the
impression that all services work in a set way. It would have been useful for the
authors to have stated that the purpose of the flow chart is to illustrate a broadly
generic pathway through the system, but that services vary widely. In the current
climate of inclusion, not every child who is referred to the Local Education Authority
following rehabilitation from encephalitis will be issued with a Statement of Special
Educational needs, as is suggested.
I have no other criticism of the book. Complex medical terms are explained in the
glossary and information is provided about contact details for support groups. Finally,
lists of further reading material are also included. I am impressed at the detail
in the book. It is extremely well written, the focus being to empower, support and
inform parents who have just seen their child weather a horrific illness and emerge
a very different child, with needs they could never have envisioned. It comes highly
recommended. A pocket version translated in other common languages should be the
next endeavour of the authors. Well done.
14th May 2006
Gilley the Giraffe … who changed
Written by Nimmi Channa
Illustrated by Phil Lynch
View inside pages
The book has been written by a mother for the siblings of her child recovering from
encephalitis. Being the parent of a child recovering from encephalitis can be a
bewildering and lonely experience. Being the young sibling of that child, or indeed
the child him or herself can be equally bewildering. "How can he look the same
brother, yet act so differently?" "What has happened to me?" "Why
has he started having seizures?" "When will we be a normal family again?"
Reviews
Beth Wick, Education Consultant
Having worked for many years with children who have suffered encephalitis, their
families and schools, I know how difficult it is for children to understand what
has happened to them.
Parents and teachers are frequently at a loss regarding how to explain to a child
why he or she feels different; becomes tired or irritable; can’t keep up at school
or at play; or no longer has the same friends, particularly when they may not fully
understand this themselves.
All of us, even young children, have a view of ourselves in terms of our interactions
with people and things around us and shaped by things that we are good at or not
so good at. When this changes and someone is the same, but not the same, this is
very confusing for an adult and even more so for a child who struggles to make sense
of this. It can be frustrating, frightening, can provoke insecurity and can lead
to further emotional and behavioural disturbance. It is often said that one of the
most difficult things for anyone after an acquired brain injury is the development
of a new sense of self.
Young children relate to stories and pictures. These are part of their familiar,
‘normal’ environment and assist with an understanding of themselves and the world
around them from an early stage in their development. A well-designed and illustrated
storybook is, therefore, an ideal start to assist children to begin to understand
and accept their acquired difficulties and differences.
The story of Gilley is carefully and sensitively told, with appropriate language
and a context within which young children can relate. Sharing this book with children
will greatly assist parents and teachers to explore these important issues and to
provoke further discussion. Children will enjoy the story and characters and wish
to return to them as favourites with whom they can identify.
Yet another excellent publication from the Encephalitis Society: an invaluable aid
for those working and living with children who have suffered encephalitis and a
good story which children themselves can read or have read to them and can share
with their friends.
Sue Lee – parent of a child who had encephalitis
I really enjoyed the book, it is very true to life. When I read how ill Gilley had
become it reminded me of my own son's illness and I had goosebumps on my arms. It
explains how people can change after encephalitis but that not everything is as
black as it seems in early recovery. I wish this book had been available for my
children to read when their brother was recovering, and for us parents too. A truly
lovely, educational book.
Jude Constable – parent of a child who had encephalitis
"Gilley" may appear, at first glance, to be a book for quite young children but
I feel that it will appeal to a much wider audience. I read the book to my daughter
Zoe who has ABI after having encephalitis in 2000. She is now nearly 9 and thoroughly
enjoyed it. She related to a lot of the problems that Gilley has and was especially
pleased that Gilley uses lists like she does. It will be a great book for other
family members and friends to read to children who haven't been affected - it explains
a lot about the changes that may occur to the affected child in a very gentle way.
It will probably educate a lot of the adults that read it too! I like the fact that
the motto at the end applies to so many children and not just those who have ABI
after encephalitis.
Well done all round.
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Tony Eves, one of
the Society's Trustees, was inspired to design and produce this special Gilley the
Giraffe soft toy. Tony has donated the toys to the Society and all income produced,
will go directly to the work of the Society.
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toy
Responding to Challenging Behaviour
Following an Acquired Brain Injury
Originally produced by the Brain Injury Association of Queensland Inc. and printed
by the Encephalitis Society in the UK under licence.
Review
Behaviour problems following brain injury can be extremely distressing for families
and carers as they cause upheaval, anger, shame and embarrassment. They are usually
more handicapping than physical problems because those suffering from them are likely
to be excluded from society through their unacceptable behaviour.
Unlike other difficulties arising from brain injury, behaviour problems may get
worse instead of better over time as disruptive actions may be reinforced inadvertently
by others in the environment.
This book is a most welcome addition to the literature dealing with the consequences
of brain injury. It is written in straightforward, direct style, using practical
examples familiar to most of us working in rehabilitation.
Both families and professionals will find the book informative and useful.
Prof. Barbara A Wilson OBE, Ph.D, D.SC., CPsychol, FRPsS, FmedSC, Acss Senior Scientist,
Medical Research Council Cognition and Brain Sciences Unit
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Acquired Brain Injury in Adults(Post Encephalitis):
A Guide for Primary & Community Care
The Guide is an A4 booklet that has been endorsed by all the major medical organisations.
It’s aim is to help members of the Primary Care and Community Team help their patients
affected by encephalitis.
Most of these health professionals will only come across one case of encephalitis
in their career. The booklet provides an overview of the illness and its consequences.
Most importantly it guides health professionals through the services that can help
people affected maximise their recovery.
Neuropsychological
Rehabilitation – Special Issue
Encephalitis: Assessment and rehabilitation across the lifespan
Guest Editors Bonnie-Kate Dewar and W. Huw Williams
About the Book
Encephalitis - inflammation of the brain - has significant cognitive, behavioural
and emotional consequences.
This special edition describes the pathway of recovery following encephalitis, from
medical management to assessment, rehabilitation and community support and advocacy.
The neuropsychological and neuropsychiatric outcomes of encephalitis in both adult
and paediatric populations are described, in addition to a number of rehabilitation
studies which aim to increase the functional independence and psychosocial adjustment
of survivors of this rare neurological condition.
www.psypress.com
List Price: £49.95, ISBN: 978-1-84169-836-6
Published by: Psychology Press, Publication Date: 30/08/2007
Pages: 260, Binding(s): Hardback
Special Issue copies, (softback), can be obtained from our Online Shop for £25
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Emma's Story – A Journey through Encephalitis
By Margaret and Ian Shaw
I read the book from cover to cover and was most impressed. Indeed I learned a great
deal that I did not previously know. I thought it to be an excellent piece of work
and that it would have been very informative and, to a great extent, comforting
had I been in a similar situation to that faced by Emma's parents. Luckily I am
incapable of imagining what it must have been like to be Emma herself. How fortunate
we are!
John FM Rodwell, Chairman, The Hedley Foundation, 9 Dowgate Hill, London EC4R 2SU
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Acquired Brain Injury –The Facts
The practical guide to understanding and responding to acquired brain injury.
This 62 page publication is brimming with information and practical strategies,
both for people who have acquired a brain injury, and their family members and carers.
This resource has been produced by the Brain Injury Assocciation of Queensland Inc.
www.biaq.com.au to ensure that
people with a brain injury, their families and carers can make the most out of life.
The Encephalitis Society has purchased copies of this excellent book to distribute
in the UK and Republic of Ireland.
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Encephalitis, a service orphan:
The need for more research and access to neuropsychology
Ava Easton, Karl Atkin & Elaine Dowell
Abstract
Encephalitis and its consequences are often misunderstood, not only by the general
public, but also by those providing health, educational and social services to those
who have been affected. The aim of this paper is to provide a brief overview of
the epidemiology and clinical consequences of encephalitis, and highlight the potential
of approaches such as neurospsychology in its treatment, with the intention of helping
health professionals improve the quality of care received by patients. It is argued
that rehabilitation of people affected by encephalitis may benefit from interdisciplinary
and biopsychosocial approaches, and that neuropsychological assessment can be a
useful tool in recovery.
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Last modified: March 2011