NECCPS Information for parents
Information for parents
If you live in the area covered by NECCPS and your child was born in 1991 or after, they are eligible to be on the Survey. If your child is on the Survey you should have been receiving annual newsletters and invitations to our annual meetings. If your child is not on the survey, the information on this page might help you decide whether or not you would like them to be.
Consent
Around the time that your child is diagnosed with cerebral palsy your paediatrician should tell you about NECCPS and ask for your consent for your child to be on the survey. You will be asked to sign a consent form or give verbal consent. If you give verbal consent, the RMSO will send you a consent form. At this point you should be given a NECCPS leaflet describing what NECCPS does. If you don't think that your child is on the Survey and you would like them to be, please download the form and send it to the FREEPOST address on the form.
Data collected at diagnosis
Your paediatrician will be asked to fill in a Ccp1 Form. This form gives us information about the birth of your child, like birth weight, gestation and what happened to them if they went to the neonatal intensive care unit.
Data collected at 4-5 years
Your paediatrician will fill in a CCP2 Forn around the time your child starts school. This gives us some information about whether or not your child has any problems with things like vision, hearing, communication and feeding.
Around this time you will receive a CCP3 form. This is the Lifestyle Assessment Questionnaire which asks questions about various aspects of your family's life and disability, such as how much modification you needed to do to your home and whether you've had to change your employment because of doctor and therapy appointments. The questions can seem very personal, but the answers are never shared with anyone, but are used instead to build a picture of the impact of disability on all families in the region.
What is the data used for?
NECCPS is almost unique in the world because it has been running for such a long time and has so much information on it. Data on the Survey has many different uses, including:
- Information for doctors, hospitals and NHS commissioners about the population of children in their areas with cerebral palsy to help with clinical audit and care planning
- Research using only the data from the database, which can be used to describe many aspects of cerebral palsy
- Research using NECCPS as a "sampling frame" for research projects. That means, with the proper ethics approval, you may be asked to participate in research projects that that want to look at many different aspects of cerebral palsy. Recent examples of this include looking at the effects of botox injections on hemiplegia and the SPARCLE study.
Who runs NECCPS?
NECCPS is housed at the Regional Matenity Survey Office. The Chair is Dr Karen Horridge Neurodisability Consultant Paediatrician. Each area of the region is represented by a "convenor" who is reponsible for making sure that the parent of every child with cerebral palsy in their area has been contacted to see if they would like to be on the Survey or not. If you have any questions about NECCPS you can ask your paediatrician or contact Mary Bythell.
Useful links
Information from the 2008 Annual Meeting on learning technologies and regional opportunities for leisure and sport.
SPARCLE The Study of Participation of Children with Cerebral Palsy Living in Europe. This is a large study that is run from the University of Newcastle.
CPTalk A forum for parents of children with cerebral palsy, started by a regional mum.
Able Needs is a website set up by a local parent to provide information for parents and carers of children with special needs.
HemiHelp is a UK based charity for people with hemiplegia and their families.
Scope is a UK disability organisation whose focus is people with cerebral palsy.
Contact a Family is a UK charity for families with disabled children.
Cumbria Cerebral Palsy - Cumbria Cerebral Palsy is a long established local charity working with children and adults who have Cerebral Palsy.
Inclusive Technology - Inclusive Technology is a major supplier of software and equipment for people with special educational needs. Excellent site with lots of useful background information. Wide range of information sheets, demo versions of programs and software upgrades
Keytools - Keytools are suppliers of a wide range of alternative keyboards, mice, etc., access software and other equipment.
Learning Grids - Masses of free curriculum-based resources for Clicker and other Crick software.
Liberator - Core business is AAC systems but they also market everything from switches through to head pointing mouse alternatives. Liberator markets AbleNet equipment in the UK.
Liberator - Core business is AAC systems but they also market everything from switches through to head pointing mouse alternatives. Liberator markets AbleNet equipment in the UK.
ACE Centre North - Offers a range of services enabling access to technology for pupils and students with physical and/or communication impairments. Downloadable information sheets.
[Adapt IT] (http://www.adapt-it.org.uk) - Supply adjustable height tables, special needs software, special keyboards, mice and any other assistive technology device to help with mobility problems, visual impairment, dyslexia or learning difficulties.
CBeebies - BBC children's site, with lots of games and resources relating to children's programmes. for parents of childrenContact a Family.
Crick Software - Crick Software are the designers of Clicker and other software for people with disabilities. Download updates to software and huge collection of Clicker Learning Grids. UK/International and North American sites available.
Don Johnston - Provide an array of critical intervention products for all components of balanced literacy instruction: reading intervention, writing intervention and computer access products.
Easiaids - Supplier of communication aids, amplifiers, page turners and other equipment. Basic online catalogue.
FreeFoto - Over 40,000 well categorised photos, including nature, food and drink, places, etc.. Lots of UK photos.
Interconnections Electronic Bulletin -Interconnections is an independent service which focuses on children with complex needs and their families. It was established in 1995 to help health, education and social services improve their support for these children and families. In pursuit of effective support Interconnections organises seminars and conferences, publishes manuals for service development, facilitates multi-agency discussions and planning, helps bring parents into decision-making, trains keyworkers and promotes the Team-Around-the-Child approach.
Makaton Vocabulary Development Project -Comprehensive site with details of Makaton symbols, including an introduction to the system, training courses and details of resources that can be purchased.
Possum Controls - Leading suppliers of environmental control systems, including GEWA and now AAC as well, with the purchase of Cambridge Adaptive Communication who are manufacturers of Cameleon and other AAC equipment. UK agents for Words+.
QED - Manufacturer and supplier of wide range of equipment, including communication aids and switches.
REM - Supplier of educational software.
SEMERC - Providers of software, hardware and information for pupils with special educational needs in mainsteam education and at home.
The Dyslexia Institute - Information on dyslexia.
Northumberland County Council Children's Services Newsletter - Issue 24 Aug Sept 2010 Network Newsletter - Packed full of information for people all over the region, but concentrates on Northumberland.
