J31869 - RMSO Cerebral palsy leaflet
4/4/07
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Useful addresses and contacts
Understanding
cerebral palsy
NECPPS
Mary Bythell is the administrator to the survey and Allan Colver co-ordinates it The Survey Office 25 Claremont Place Newcastle upon Tyne NE2 4AA Telephone: (0191) 233 1658
SCOPE
PO Box 833, Milton Keynes MK12 5NY, England, UK. www.scope.org.uk - Telephone 0808 800 3333
SCOPE Northeast
Unit B, Moor Park Business Centre, Thornes Moor Road, Wakefield WF2 8PF, Telephone (01924) 366711 Fax (01924) 366764
HemiHelp
for Children with Hemiplegia Camelford House, 89 Albert Embankment, London SE1 7TP www.hemihelp.org.uk - Telephone - 0845 123 2372
Cerebra
For Brain Injured Children and Young People FREEPOST SWC3360, Carmarthen SA31 1ZY Wales www.cerebra.org.uk – Telephone 0800 328 1159
Contact a Family
For families with disabled children The Dene Centre, Castle Farm Rd, Newcastle upon Tyne NE3 1PH www.cafamily.org.uk – Telephone 0191 213 6300
and the work of the North of England Collaborative Cerebral Palsy Survey (NECCPS)
J31869 - RMSO Cerebral palsy leaflet
4/4/07
10:28
Page 2
Understanding Cerebral Palsy;
the work of the North of England Collaborative Cerebral Palsy Survey (NECCPS)
1. What is the NECCPS?
The North of England Collaborative Cerebral Palsy Survey (NECCPS) is a survey of all children with cerebral palsy born in the area between the River Tees and the Scottish border and from the North Sea in the east to the Irish Sea in the west. It includes children with cerebral palsy born since 1991. Its main aims are to: • Find out if cerebral palsy is becoming commoner or not • Describe how cerebral palsy affects children and families • Understand better what causes cerebral palsy and how it might be prevented • Provide information for starting research projects
6. Using the data – (sometimes with data from other centres in the UK and other countries in Europe)
The main areas of study are: Is cerebral palsy getting less common or not? What causes cerebral palsy? Do people with cerebral palsy live on average as long as other people? Do children with cerebral palsy have good quality of life? Do children with cerebral palsy and their parents get involved (participate) in life situations as much as others? If they do not, why is this and how can it be improved? Then there are smaller local projects such as: What is the best way to feed children with severe cerebral palsy? Do children and parents prefer mainstream or special schools? What is the cause of the shaky (ataxic) type of cerebral palsy? What is the best way to help language and communication of children with cerebral palsy
2. How common is Cerebral Palsy?
Cerebral palsy is the term for a wide range of movement difficulties which are caused when the parts of the brain which control these movements cannot work properly. Although it is the commonest cause of physical disability in children it is still relatively rare. About one in every four hundred children born in the North of England has cerebral palsy.
3. What are the types of Cerebral Palsy?
Children with cerebral palsy show different patterns of physical difficulties. The most common type is spastic cerebral palsy in which muscle stiffness and general weakness make everyday movements difficult. Different limbs can be involved - for example, all four limbs (quadriplegia) or limbs on one side (hemiplegia). Less common types of cerebral palsy are ‘shaky’ movements (ataxia), or random movements that are difficult to control (athetosis). Children with cerebral palsy may also have poor eyesight, poor hearing, epilepsy or learning difficulties.
4. What Is The Impact of Cerebral Palsy?
Cerebral palsy cannot be cured but it is possible to reduce the problems it causes. It is very important to treat these problems and lessen their effects. The condition can affect many body functions - such as movement, hearing, eyesight and eating. A family may see many doctors and specialists over the years and many families find this time-consuming and confusing. However, NECCPS can use information from professionals and the observations of parents and carers, to increase knowledge and awareness about cerebral palsy, and also improve the services families receive.
The North of England Collaborative Cerebral Palsy Survey and You
Every child with cerebral palsy living in this area becomes part of the Survey if their parents give permission. The survey is much more useful if most parents do give permission. One of the professionals looking after your child (usually the paediatrician) then gives some simple details about him/her to the Survey. When your child reaches age of four to five, the information from the paediatrician is brought up to date. At that time, the Survey contacts you to invite you to complete a questionnaire about many aspects of how you are all getting on, including questions about: how much your child can do compared to another child of the same age, money worries, the different professionals you go to see, and school. Although this information is detailed and personal, most families are keen to help, and find it interesting and thought-provoking once they get started. It is also kept as securely as the first set of information. The survey has been running now for thirteen years. It used to produce an annual report but we now send newsletters. We also hold an annual meeting each Spring at which parents are very welcome and at which parents or children often make presentations. We also have occasional “fun and information” days for children and parents. If you have any questions about the Survey, please contact the survey at the address below or ask your child’s paediatrician.
5. What Causes Cerebral Palsy and could it be prevented?
Cerebral palsy occurs more often in certain groups of children - for example, those who were born very prematurely or those who are very ill at birth. However, often it isn’t possible to say why one child in particular has the condition. It’s no wonder many families find this one of the hardest things to deal with. The cause of some cerebral palsy is known: • A baby’s brain may not form normally in the womb • A baby’s brain may be damaged in the womb perhaps by an infection or a stroke • A baby’s brain may be damaged due to severe shortage of oxygen during birth • A baby’s brain may be damaged because of the difficulty of keeping premature babies alive on a ventilator The cause of much cerebral palsy is not known but in these cases there are often factors which are associated: • Being born very early • Not growing well in the womb • Being a twin