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.

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.

There is currently no information specific to the UK about the cost of cerebral palsy, and Action Cerebral Palsy is working to address this lack of detailed information. Studies have been conducted elsewhere on the lifetime costs of cerebral palsy, most recently in 2018 by Deloitte. This study used Australian data on the incidence of cerebral palsy which was supported by the Australian Cerebral Palsy Register (ACPR) CP Register | Cerebral Palsy Alliance

Key findings of the Deloitte’s analysis: 

• The total cost of cerebral palsy in Australia in 2018 was $5.17 billion, or $145,642 per person with cerebral palsy in 2018.  
• The total financial cost of cerebral palsy in Australia was estimated to be $3.03 billion in 2018. Significant costs include lost productivity ($1.29 billion), costs of disability support services ($1.12 billion) and efficiency losses ($553.59 million).  
• The total cost of lost wellbeing on each person with cerebral palsy was $2.15 billion, or $60,458 per person with cerebral palsy in 2018.

There have been a number of studies examining the costs faced by disabled people and families with disabled children in the UK, including the Disability Price Tag reports by Scope, and the Work and Pensions Committee report on the Disability Employment Gap published in July 2021.

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
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:

• NHS – Cerebral Palsy
• Scope UK
• Cerebral Palsy Alliance Australia
• Cerebral Palsy Scotland
• Bobath Centre
• Council for Disabled Children | Information about Cerebral Palsy

The following website may be of help in identifying medical and/or scientific research on cerebral palsy:

• British Academy of Childhood Disability
• William Little Foundation
• Cerebral Palsy Alliance Australia
• Northern Ireland Cerebral Palsy Register
• Cerebral Palsy Register Wales

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 25^th 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