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.
Encephalitis – a parent's handbook, is available from our
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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
Emma's Story – A Journey through Encephalitis
By
Margaret and Ian
Shaw
The Encephalitis Society
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
An initial copy of the DVD is available at no charge to Encephalitis Society Members;
however we do ask that you pay the postage. Additional copies and copies for anyone
not directly affected by encephalitis or living outside the UK and Republic of Ireland
are £7. To become a member of the Society, please download and complete the
membership form at the top right of this page.
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Last modified: 26 September 2008