A special issue of Neuropsychological Rehabilitation has been issued which is dedicated to Encephalitis.
Encephalitis: Assessment and rehabilitation across the lifespan

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

Commissioning Services for People with Long Term Neurological Conditions.
Department of Health. April 2007

Introduction
This guide note is the product of regional workshops in which the roles of commissioners, practitioners and clinicians were examined with a view to improving commissioning practice and better outcomes for end users. It aims to support commissioners in their work to secure effective services for people who live with the effects of long term neurological conditions. It is part of the work arising from the National Service Framework (NSF) for long term neurological conditions1, and reflects the commitments outlined in the White Paper, Our Health Our Care Our Say. It provides a checklist which commissioners may use to help assess their current practice and as a basis for local development and change.

Read More

Encephalitis has produced an Information DVD. This resource explains in sections what the illness encephalitis is, how it is diagnosed and treated, how to deal with the problems and difficulties that follow and what the Society does to support all those affected.

View the trailer

Martin Kemp marks Encephalitis Awareness week, (9th –15th October,) with his Patronage of the Encephalitis Society.

Martin Kemp, was the bass player in ‘Spandau Ballet’ during the 1980’s, and later attracted international acclaim as Reggie Kray in the film ‘The Krays’. One of his most recent and perhaps well-known characters was ‘Steve Owen’ in Eastenders.

Less well known perhaps, is the fact that Martin has first hand experience of neuro-surgery and neuro-disability. Martin found that he had 2 brain tumours during the 1990’s, one of which was surgically removed, leaving him with a large metal plate in place of part of his skull and the second tumour being treated aggressively with what was then ground-breaking ‘tactical radiation’.

Whilst talking to Ava Easton, Martin said:

“As you know I have in the past suffered from my own problems relating to my brain, when I first came out of a brain tumour operation, I lost the use of my leg, one eye and still today suffer from epilepsy. I was lucky, my leg and my vision came back to life after a few weeks, but for a brief moment in time, my life came crashing down around me as I thought they would be permanent, so on a somewhat small level I can understand the fear and uncertainty that sufferers of this disease face.”

The Society is delighted to receive Martin’s valuable support and we look forward to working with him over the coming months and years.

Martin Kemp & Ava Easton

Health minister Rosie Winterton has announced that people with long-term conditions or social care needs will receive information prescriptions, which will tell them how to find out more about their condition.

By 2008 it is expected that everyone with a long-term condition will routinely receive information about how to deal with their condition and where to go for support.

www.tinyurl.com/yxsdbr

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

At a meeting of parents and children following the launch of “Encephalitis – a parent’s handbook” we talked about how we could produce information for children. A representative from the Brain and Spine Foundation was at the meeting and explained that they had funding to produce an information pack on “acquired brain injury” for teenagers called “Headstrong”. The Encephalitis Society was welcome to input information on encephalitis into the pack and the pack would be made available to teenagers affected by encephalitis.

The group also talked about the need for a book for younger children and examples of books for children produced by other organisations were looked at. This gave Nimmi Channa, one of our Mums, the inspiration to write a story “Gilley the Giraffe – who changed”. She wrote it on the train going home from the meeting!

Our next task was to find an illustrator, so we advertised on a free Arts website and were inundated with some wonderful drawings of “Gilley the Giraffe felt ill. His head hurt.” Thirteen of the best were selected, sent to our families with young children who were asked to return the 4 they liked best. From this selection we interviewed 4 candidates and chose Phil Lynch as illustrator.

Phil has been working hard on over 20 illustrations for the book and here is the front cover.

The cost of producing the book has been met by BBC Children in Need, who also funded the parent handbook. It will be given to families with a child affected by encephalitis at no charge.

The book was launched in this Autumn at London Zoo.

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.

Reviews

Beth Wicks
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.

Headway publish and distribute a print newsletter, Making Headway, and a related e-newsletter, four times a year.