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.
One copy of the Handbook will be provided free of charge to parents in the UK, with
a child affected by encephalitis. Additional copies may be purchased for £10 using
the Order Form below.
You can download a copy here:
Parents Handbook 
(5mb – please be patient)
Or order a hard copy now from our
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Parents – Stop Press
Independent Mediation Services
Local authorities are failing to tell parents of children with special educational
needs (SEN) Aabout their right to access independent mediation services, according
to a Department for Children, Schools and Families (DCSF) report.
The national evaluation of disagreemenr resolution services found parents, schools
and council staff remain in the dark about the existence and function of mediation
services.
Details at www.dscf.gov.uk and search for DCSF: Special Educational Needs Disagreement
Resolution Services: National Evaluation Research Information. For help with education
issues contact IPSEA (Independent Panel for Special Education Advice)
www.ipsea.org.uk
Disabled Children a National Priority
Through the Aiming High for Disabled Children(AHDC) programme, the Government has
made disabled children a national priority. Transforming short break services is
key to delivering the AimingHigh for Disabled Children programme. Responding to
what families told them, most of the funding – £370 million from the
Department for Children, Schools and Families (DCSF) with funding from the Department
of Health (DH) – will be spent on short breaks. These breaks will give disabled
children the chance to develop new relationships and interests and experience life
away from their parents as other children do. And they will give parents and carers
the much needed chance to take a break from caring.
The AHDC programme summaries are now available. They can be downloaded from www.everychildmatters.gov.uk/
Primary Care Trusts unable to say how much they will spend
on health services for disabled children
The Every Disabled Child Matters campaign (EDCM), working with ACT - Association
for Children's Palliative Care, Children's Hospices UK and Whizz-Kidz, has revealed
survey results showing that not one Primary Care Trust (PCT) in England is able
to specify how much funding they will be spending on essential health services for
disabled children.
This is despite disabled children being a local priority group in this year's NHS
Operating Framework, coupled with repeated assurances from Ministers that PCTs have
additional funding for disabled children and children with palliative care needs.
PCTs have also been told that they are expected to match local authority children's
services spending commitments.
EDCM are asking supporters to email their MP, asking MPs to write to Alan Johnson
(Health Secretary) and Ed Balls (Children's Secretary) to get them to announce the
health funding that is available for PCTs to spend. Please go to the EDCM website
and take action at Web: www.edcm.org.uk/healthfunding