Must Try Harder – Booklet and DVD

This resource explains how teaching staff might help pupils with an Acquired Brain Injury (ABI), so as to meet a child’s educational needs. It examines why educational difficulties can arise and useful strategies.

Encephalitis – a guide

This 75 page book 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.

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

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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?"

The story of Gilley is carefully and sensitively told, with appropriate language and a context within which young children can relate. Beth Wicks, Education Consultant, says “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”.

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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Last modified: 14 January 2008