We aim to be a source of practical information about the care, services, education and support available to children at risk of or diagnosed with cerebral palsy and their families.
How We Can Help You
Whether you are looking for information about cerebral palsy, or have concerns about a child’s development, are supporting a family awaiting a diagnosis, or one that has already received a diagnosis, read more about the information, research, training and support that is available.
Helping parents and early sign-posters to recognise the warning signs and the need to seek urgent medical referral.
Commonly Asked Questions
Cerebral palsy is a lifelong neurological condition which affects the body’s ability to move normally and which also has an impact on many related aspects of health, learning, development, social participation and wellbeing.
Cerebral palsy is an “umbrella” term that is used to describe a range of movement disorders which can have an impact on many aspects of normal childhood development. It is sometimes referred to as “the cerebral palsies” or CP. It happens as a result of interference or damage to the development of a baby’s central nervous system (the brain and spinal cord) between conception and 3 years of age.
The way in which it affects body tone (muscle strength) and movement skills will depend on where the damage in the brain has occurred. The initial damage to the brain will not get worse but its effect on a developing child’s muscular and skeletal systems, and hence motor (movement) and functional abilities, may lead to problems with movement and posture as the child grows. It can also interfere with the way the child is able to physically interact with his/her environment, communicate, carry out self-care skills and learn from the normal activities of childhood. This is why early intervention is so important for children at risk or with cerebral palsy.
For more information about cerebral palsy, please click here.
Key signs that parents should be encouraged to seek professional advice are; baby feels floppy, stiff or a combination of these, is not using hands or both sides of the body normally or is late in reaching milestones in sitting (8 months) and walking (18 months). You can read more about the signs of potential cerebral palsy here. There may be other reasons why the baby or toddler is showing these signs, but it is still important to check it out.
Cerebral palsy (CP) is the most common physical disability in childhood. It affects approximately 1:400 children with approximately 1,800 children diagnosed each year in the UK. Despite advances in healthcare, whilst this 1:400 figure has fluctuated over the past 60 years, it has not changed considerably. The incidence rate for cerebral palsy is the same across Europe, the United States and Australia. There are approximately 30,000 children in the UK living with cerebral palsy, and there are approximately 111,000 people in the UK who have cerebral palsy. This is similar to the numbers who have Multiple Sclerosis and Parkinson’s Disease. By 2031, there will be almost a 3-fold increase in the number of people with cerebral palsy over the age of 65. Globally, there are 17 million people living with cerebral palsy.
There is currently a lack of robust information about the incidence of cerebral palsy and its impact on the population across the UK. However, the Northern Ireland Cerebral Palsy Register and the Cerebral Palsy Register Wales both provide medical data on the prevalence of the condition in the two devolved UK nations. The Surveillance of Cerebral Palsy in Europe register provide data from European members.
The different types of cerebral palsy are:
- Spasticity: high tone (stiffness) with tense muscles. This is the most common type of cerebral palsy.
- Dyskinetic: sometimes referred to as dystonia, athetosis or chorea. This is characterised by fluctuating tone creating constantly changing involuntary movements which are difficult to control.
- Ataxic: poor sense of balance causing falls and stumbles
- Sometimes there may be a mixture of these presentations.
For more information about cerebral palsy, please click here.
The effect on an individual will be unique but may involve the following disorders:
- Abnormalities of muscle tone: stiff, floppy, rigid or fluctuating (the terms spasticity, low tone, dyskenetic or mixed patterns of movement may be used).
- Retained primitive reflexes such as asymmetric tonic neck reflexes, Moro, startle, primitive stepping.
- Abnormal muscle tone may affect one or both sides of the body and one or all four limbs. (Hemiplegia, diplegia, quadriplegia) and may be mild, moderate or severe.
- Problems with processing information from the sensory systems including touch, vision, hearing, smell, taste, balance and co-ordination leading to hypo or hyper-sensitivity and/or modulation problems.
- Problems with balance
- Attention Deficit Hyperactivity Disorder (ADHD) symptoms.
- Short and long-term memory problems
- Visual spatial and navigation problems
- In turn, these issues my affect:
- Cognition resulting in learning difficulties and language/communication difficulties, either as a result of low cognitive functioning and/or as a result of restricted access to the learning experiences of normally developing infants and young children.
- Vision, hearing, and speech and language and/or the processing of information from these functions.
- Sensory and perceptual processing which can lead to difficulties with planning and organising movements and organisational skills.
- Health and well -being, eating and drinking, nutrition, digestion, respiration, epilepsy and other medical disorders.
- Emotional and social development and mental health.
Sometimes the level of severity of the physical disability of cerebral palsy is described using a scale of 1 – 5 on the cerebral palsy gross motor function classification scheme:
- One in three children with cerebral palsy is unable to walk.
- One in four children with cerebral palsy cannot feed or dress themselves.
- One in four children with cerebral palsy has a severe learning disability
- One in ten children with cerebral palsy has no useful vision.
The Australian Cerebral Palsy Alliance has carried out extensive research on the condition and provides the following information about the possible causes and risk factors on its website.
For most people with cerebral palsy, the cause is unknown and there is no single cause. Researchers have determined that only a very small percentage of cases of cerebral palsy are due to complications at birth (e.g. asphyxia or lack of oxygen).
Today, it is accepted that cerebral palsy usually arises from a series of causal pathways, i.e. a sequence of events that when combined can cause or accelerate injury to the developing brain.
For example: Although prematurity is the largest risk factor for cerebral palsy, it is the sequence of events (causal pathways) that led to the premature birth that may have caused the cerebral palsy, rather than the premature birth itself.
In 13 out of 14 cases of cerebral palsy in Australia, the brain injury leading to cerebral palsy occurs either in the uterus (while the mother is pregnant) or before 1 month of age.
Stroke is the most common cause in babies who acquire cerebral palsy after 1 month of age. The stroke may occur spontaneously or arise from surgical or heart complications.
Risk factors do not cause cerebral palsy. However, the presence of some risk factors may lead to an increased chance of a child being born with cerebral palsy. Some risk factors for cerebral palsy have been identified. These include:
- premature birth (less than 37 weeks)
- low birth weight (small for gestational age)
- blood clotting problems (thrombophilia)
- an inability of the placenta to provide the developing feotus with oxygen and nutrients
- RH or A-B-O blood type incompatibility between mother and baby
- infection of the mother with German measles or other viral diseases in early pregnancy
- bacterial infection of the mother, foetus or baby that directly or indirectly attacks the infant’s central nervous system
- prolonged loss of oxygen during the pregnancy or birthing process, or severe jaundice shortly after birth.
Who is at greatest risk?
The Australian Cerebral Palsy Register Report 2013 has identified four groups that, statistically, have a greater risk of cerebral palsy.
- Males – Males are at greater risk of having cerebral palsy
- Premature babies – Prematurity is associated with higher rates of cerebral palsy
- Small babies – Low birth weight is associated with higher rates of cerebral palsy. This may be a result of prematurity or slow intrauterine growth. Around 42% of children with cerebral palsy had low birth weight, compared to just over 6% of the Australian population.
- Twins, triplets and higher multiple births – 11% of children with cerebral palsy were from a multiple birth, whereas the rates of multiple births are only 1.7% in the Australian population.
Is cerebral palsy genetic/hereditary?
Familial cerebral palsy is uncommon, approximately 1% of people with cerebral palsy will have a sibling with the condition. It is even uncommon in twins – when one twin has cerebral palsy, 90% of co-twins will not have cerebral palsy.
However small these statistics, they are enough to suggest that there might be some genetic factors involved in cerebral palsy. Researchers generally believe that a genetic disposition to certain characteristics, i.e. prematurity or heart problems, may start a chain of events (causal pathways) that can result in a child having cerebral palsy.
The following websites may be of help with general information on cerebral palsy:
It is best to start with the health professionals who know the family and the baby. The following websites may also be of help for parents with a child with cerebral palsy:
- Scope – Home | Disability charity Scope UK – which provides practical information and support.
- IPSEA – (IPSEA) Independent Provider of Special Education Advice – IPSEA offers free and independent legally based information, advice and supportto help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND).
- National Portage Association – Welcome | National Portage Association – which is an organisation which provides home visits by trained practitioners to support early development for pre-school children with additional needs and their families.
“Local Offer” – on your local council’s website also has details of local organisations which offer help and support for children with additional needs and their families.
The main legislature that provides for the legal requirements and duties of local authorities, health bodies, schools and colleges to provide for those with special educational needs is the SEND Code of Practice (SEND code of practice: 0 to 25 years – GOV.UK) under part 3 of the Children and Families Act 2014.
In 2017, NICE published guidelines (Overview | Cerebral palsy in under 25s: assessment and management | Guidance | NICE) covering diagnosing, assessing and managing cerebral palsy in children and young people from birth up to their 25th birthday. This guidance aims to make certain that children with cerebral palsy get the care and treatment they need, so that they can be as active and independent as possible.
Action Cerebral Palsy has undertaken extensive research and written reports on the quality and level of provision available to children with cerebral palsy across the UK, including:
- Enabling Potential – a report of the 2014 Parliamentary Enquiry on Cerebral Palsy
- Variations in Care – an analysis of cerebral palsy provision published in 2016.
- Two-year review report: An Analysis of Provision of Pathways of Care for Infants and Children with Cerebral Palsy across the United Kingdom (2018)
In 2020, Action Cerebral Palsy sponsored the first ever All-Party Parliamentary Group on Cerebral Palsy chaired by Mary Foy MP and Paul Maynard MP.
- The first report Early identification, intervention and pathways of care of infants and children with cerebral palsy: the case for reform and investment was published in March 2021.
- The second report Best practice in Education, Health and Care Plans (EHCPs), Teaching, and Learning for Children with Cerebral Palsy was published in October 2021.
- See details of the APPG sessions and reports on the APPG website.
The following websites may be of help in identifying educational materials, training courses and research on cerebral palsy:
- pdnet – a network for those supporting learners with physical disability
- Council for Disabled Children | Information about Cerebral Palsy
- The Pace Centre | Training
- Reed Courses | Cerebral Palsy Level 2 CPD Certified
- The Open University | Growing up with disability
There are a number of training courses and websites that may be of help:
- British Academy of Childhood Disability which provides support to professionals working in the field of paediatric disability.
- Training in Early Detection for Early Intervention course (Newcastle University) – which is an interactive course offers training in how to detect early atypical motor behaviour in infants 0-6 months old. It is designed principally for front-line community healthcare professionals but is relevant to many others working with infants. You can take the course in your own time.
- ‘How to Manage: Recognising Neuromuscular Disorders’ – which helps educate health care professionals (HCPs) on how to recognize and diagnose neuromuscular disorders (NMDs) as early as possible in young patients – PTC Therapeutics – Improving Neuromuscular Disorders Diagnosis Through e-Learning
“I’m an Occupational Therapist and Director of Clinical Services at Pace, a children’s charity where we provide a multidisciplinary early intervention service for 0 – 3 year olds and their families. Early Intervention programmes look to capitalise on using the “power of early” to shape the baby’s developing brain and recover potential. Ideally, such intervention can occur from birth for higher risk infants.”
– Lindsay Hardy
Director of Clinical Services, Child and Family Services, Occupational Therapist, PACE