Updated: 10th May 2021
Reaching Families and Amaze have worked in partnership to produce a series of informative material written by parent-carers for parent carers. These include a series of factsheets on specific conditions designed to be used by parent-carers when they receive their child's diagnosis. The information provided will help to gain a better understanding of their child’s condition, alongside the current local support services available.
The factsheets have been reviewed by NHS clinicians.
Parent-carers were involved at all stages of the editorial process
What is Cerebral Palsy?
Cerebral palsy is a general term used to describe a group of conditions affecting a person’s movement, posture and co-ordination. It is caused by damage to the brain, mostly before, during or shortly after birth. Around 1 in 400 children in the UK have cerebral palsy.
Find more factsheets on Reaching Families website.
Characteristics of Cerebral Palsy
Cerebral palsy can affect people in a wide range of ways. Some people have very mild forms, whereas others have more severe forms of the condition. No two people are affected in exactly the same way.
Cerebral palsy can cause problems with:
standing and walking
with controlling or relaxing muscles
fine motor skills
Some people who have cerebral palsy may have other conditions such as epilepsy, scoliosis (curvature
of the spine), hearing or visual impairments or learning difficulties. Cerebral palsy is not a progressive
condition, which means it does not get worse as your child gets older. But over time the physical
challenges of the condition can cause wear and tear on the body.
Types of Cerebral Palsy
Spastic cerebral palsy – the most common form. This is characterised by stiff muscles, which might be affected in different parts of the body. Hemiplegia affects one side; Diplegia mainly affects the legs and Quadriplegia affects the upper and lower body.
Athetoid or Dyskinetic cerebral palsy – a less common form of the condition characterised by random and uncontrolled body movements or sudden involuntary spasms.
Ataxic cerebral palsy – another rare form of the condition characterised by problems with balance, depth perception and fine motor skills
Mixed cerebral palsy – type of the condition characterised by a mixture of the above types, most commonly stiff muscles and involuntary movements.
Types of Treatment
There is no ‘cure’ for cerebral palsy but there are a number of therapies available that can improve
movement, co-ordination and independence, including:
Bobath therapy – intense form of physiotherapy which seeks to maximise a child’s ability to move, sit
and function as normally as possible.
Conductive education – a method of teaching children with motor difficulties like cerebral palsy how
to maximise mobility and independence.
Medication – a number of medicines can help children who are in pain or discomfort.
Occupational Therapy (OT) – can help your child gain independence and master everyday tasks
such as eating and going to the toilet.
Orthopaedic surgery – sometimes used to correct bones and joints. May involve lengthening
muscles that are too short.
Physiotherapy – a vital component of any therapy for cerebral palsy, it prevents muscles from
contracting or weakening and promotes independence.
Selective Dorzal Rhizotomy (SDR) – specialist surgery not suitable in all cases. Some nerve endings
in the lower spinal column are cut to reduce muscle stiffness and aid mobility.
Speech and Language Therapy (SALT) – can be useful in helping children speak or develop
alternative means of communicating (for example, sign language).
Support and Advice Services
Chailey Heritage Clinical Services – a range of services and therapies available to children with complex physical or neurological physical disabilities. Email: sc [email protected],
Tel: 01825 722112.
– a social work service for children and young people with severe and/or complex disabilities, working with families and other agencies to ensure they get the right support. call: 01403 229888 or email: Child Disability Service [email protected] Please note that some children may be referred on to the MASH (see contact details below).
– a free leisure discount card for 0 to 25 year olds with SEND, which is run by Amaze. visit website or call: 0300 123 9186.
Compass Card West Sussex Dame Vera Lynn Children’s Charity – regional centre of excellence in the delivery of conductive
education to parents and children with cerebral palsy. tel: 01403 782294 or email: [email protected]
Guild Care – offers a range of services for children and adults with Cerebral Palsy, including SuperScopers - a group for families of children with additional physical needs, for more information contact [email protected]
– support for parents with at least one child.
Home start Portage – a home-based educational programme tailored to a child’s individual needs. Available to
very young children. Chichester: 01243 536182, Crawley: 01293 572480, Horsham and Mid-Sussex:
01444 243150, Worthing: 01903 242558.
– available for parents and carers to borrow from a number of children and family centres.
Sensory Toys Short Breaks for Disabled Children – commissions holiday clubs, after school clubs, buddy schemes and short breaks at home or in the community. Tel: 0330 222 2562 or email: [email protected]
West Sussex Children Services – support from health and social care. If your child is under 18, call the Integrated Front Door (IFD) for West Sussex Children Services, tel: 01403 229888
or email: [email protected]
For over 18s call the Adults’ CarePoint: 01243 642121,
or email: [email protected]
Other resources – the Ashdown Club, Worthing: 01903 528607; Kangaroos, Haywards Heath: 01444
459108; PAcSO, Chichester: 01243 533353; Scope Inclusion South East: 01273 695675; Springboard
Project, Crawley: 01293 531963, Horsham: 01403 218888.
Further reading and useful links
Making Sense of it All – our handy parent/carer guide contains information and advice on benefits,
support for your child at school, getting help from social services and accessing social & leisure
Cerebral Palsy information website.
Disability Living Allowance (DLA) – your child may qualify for DLA, a state benefit that will help
with their care. Search for ‘DLA’.
Scope or call the helpline: 0808 800 3333.
West Sussex Local Offer