- An overview of what Cerebral Palsy is and how it affects different people
- Some answers to the more frequently asked questions about Cerebral Palsy
- A list of useful contacts and support groups
- Some information about Disability Living Allowance and PIP
- A form to register your child with the Children’s Disability Register
- Some information about our service and the support we can offer
About cerebral palsy
(sourced from Scope)
Whilst cerebral palsy can be described in various ways, in 2006/7 it was defined as:
“A group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication and behaviour, by epilepsy and by secondary musculoskeletal problems.”
Obviously this is a clinical definition meaning that cerebral palsy is a condition in which there may be abnormal brain development or injury to the brain as it develops. This can occur before, during, after birth or during early childhood.
Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent therefore children with cerebral palsy will often be referred to a therapist or see a multi-disciplinary team through referral to the local Child Development Centre.
Depending on the precise area of the brain that is affected, there may be associated difficulties which become obvious during development; for example, in vision, hearing, learning and behaviour.
It is not unusual for a diagnosis not to be given until the child’s motor development is nearly complete as doctors observe the child through the development stages of sitting, crawling and walking. There is currently no test before birth that will identify cerebral palsy.
Cerebral palsy is often referred to as an “umbrella term” (Focusing on Cerebral Palsy) as it applies to a collection of conditions where there is primarily a disorder of voluntary movement and/or co-ordination. No two people will be affected by their cerebral palsy in the same way and it is important to ensure the focus of treatments and therapies are tailored to individual needs.
Prevalence of cerebral palsy
In the UK, cerebral palsy affects about one in every 400 children (2 – 2.5 per 1,000 live births). Cerebral palsy can affect people from all social backgrounds and ethnic groups.
Causes and risk factors of cerebral palsy
It can be very difficult for doctors to give an exact reason as to why part of a baby's brain has been injured or failed to develop. In some instances, there may be no obvious single reason why a child has cerebral palsy. It is generally accepted that causes of cerebral palsy can be multiple and complex. These can include:
- Infection in the early part of pregnancy
- Oxygen deprivation to the brain
- Abnormal brain development
- Restricted intrauterine growth
- Neonatal stroke
- Blood such as rare abnormalities of platelets
- A genetic link (though this is quite rare)
A risk factor is not a cause; it is a condition or characteristic which, if present, can increase the chance of something occurring, in this case, cerebral palsy. Even though a risk factor may be present it does not mean that cerebral palsy will occur; nor does the absence of a risk factor mean it will not occur. Focusing on Cerebral Palsy in 1994 mentioned the following risk factors.
- Difficult or premature birth
- Twins or multiple birth
- Mother’s age being below 20 or over 40
- Father under 20 years
- First child or child born fifth or more
- Baby of low birth weight (less than 2.5 pounds)
- Premature birth (less than 37 weeks)
More than one risk factor can be present at the same time (for example, low birth weight and being a twin) and such a combination can further increase the probability of cerebral palsy occurring.
Types of cerebral palsy
In general we talk about three main types of cerebral palsy - spastic, dyskinetic (often known as athetoid or dystonic) and ataxic cerebral palsy. These describe effects on the body and muscle tone that are dependent upon, which part of the brain has been affected. Many people with cerebral palsy will have a mixture of these types.
Spastic cerebral palsy
This is present in 75% - 88% of people with cerebral palsy, spasticity refers to the muscle tone being unyielding and tight (hypertonia) with a decreased range of movement. It can affect different and many areas of the body so a person with spastic cerebral palsy could, in addition to impaired mobility, have difficulties with speech or continence.
If the person is only affected on one side of their body the term used to describe this is hemiplegia or unilateral cerebral palsy. If two limbs are affected (usually legs more than arms), the term is diplegia and if all four limbs are affected the term used is quadriplegia.
Dyskinetic cerebral palsy
Sometimes referred to as dystonic, athetoid or choreoathetoid. Present in about 15% of people with cerebral palsy. People with dyskinetic cerebral palsy experience uncontrolled, involuntary, sustained or intermittent muscle contractions as the tone of the muscle can change from floppy and loose (hypotonia) to tight with slow, rhythmic twisting movements.
The whole body can be affected resulting in difficulties maintaining an upright position. Speech can be hard to understand as there may be difficulty controlling the tongue, breathing and vocal chords.
Ataxic cerebral palsy
This is present in about 4% of people with cerebral palsy. Ataxia is defined as an “inability to activate the correct pattern of muscles during movement”. People with ataxic cerebral palsy find it very difficult to balance.
They may also have poor spatial awareness, which means it is difficult for them to judge their body position relative to things around them.
Ataxia affects the whole body. Most people with ataxic cerebral palsy can walk but they will probably be unsteady with shaky movements. Speech and language can also be affected.
It can be difficult to say what type of cerebral palsy a person has as it is common to have a combination of two or more types. As mentioned, it is important to bear in mind that no two people with cerebral palsy are affected in the same way. Some have cerebral palsy so mildly that it’s barely noticeable. Others may be profoundly affected and require help with many or all aspects of daily life.
All people with cerebral palsy are individuals; some may have associated difficulties while others may not. These can include:
- Secondary musculoskeletal problems and motor control. Often contractures of muscles of the spine or hip dislocation. Here it is important to look at postural management such as asymmetry (balance, proportion and co-ordination) of the body. A referral to a physiotherapist may be helpful.
- Learning or cognitive impairment. These difficulties can be mild, moderate or severe and generalised or specific. The reported incidence varies because different studies define the impairment in different ways. However it is estimated that the incidence of intellectual impairment is around 45% with 25% classified as severe (meaning an IQ score of less than 50). As with the rest of the population there is a huge range of intelligence and many children perform well at school or further education.
- Constipation, muscle spasms or problems with sleeping and sleep patterns. The doctor or health visitor should be able to offer advice about this. If you or your child is experiencing difficulties in sleeping, you may find our sleep information helpful.
- Sensory impairment such as difficulties with hearing and visual acuity. Hearing impairment is only present in 8% of cases . An audiologist may be able to offer more specialized advice. If you are concerned ask your doctor for further information and/or referral to a specialist.
- With speech, language or feeding difficulties, it may be useful to have contact with a Speech and Language Therapist. Again speak to your doctor or Paediatrician if it involves a child.
- Epilepsy can occur in up to a third of children with cerebral palsy. Seizure types can vary. Consult your doctor as medication can help to manage this.
- Spatial awareness and perception. This is about a person's ability to interpret what they have seen as opposed to problems with vision/eyesight.
- Sometimes behavioural or psychological behaviours (inattention, anxiety, over activity) may develop in one in four children with cerebral palsy.
Because every person with cerebral palsy is affected differently, it is impossible to be prescriptive about what specialists or treatment may help. Some people with cerebral palsy will receive injections of Botulinum Toxin A ™ as this can relieve spasticity in muscle tone, others may find physiotherapy, conductive education or even surgery more helpful.
It is very much an individual requirement and needs to be discussed with the medical professionals involved in your or your child’s care. You may also need to have contact with Social Services as a Social Worker can help you with assessments of care needs, local services and so on. However, provision of any health or social care service may depend on what is available in your area.
In addition to related links and services provided, some other useful contacts are listed below:
Sheffield Union Saturday Playgroup
A term-time playgroup for children with additional needs and their siblings, aged 3-9.
Tel: 0114 222 8547 (Helen Giorgi)
Saturday Playgroup, Sheffield Volunteering, The Union, University of Sheffield, Western Bank, Sheffield, S10 2TG
Frequently Asked Questions (FAQs)
(sourced from Scope)
For general questions about disability issues, please contact the Scope Helpline on 0808 800 3333 or email firstname.lastname@example.org
I’ve just been told that my child is likely to have cerebral palsy – what’s next?
The time of diagnosis can be a very difficult time for families. We would suggest that you contact Scope Response where our helpline workers can provide you with information about the condition and answer many of your questions.
We can also send you information and recommend other support services that may help. Scope also has a small network of Regional Response Workers across England and Wales. Our Response Workers can offer families support around cerebral palsy and particularly at time of diagnosis. Referral to a local Regional Worker can be made via the Helpline.
I have cerebral palsy and seem to be having more difficulties as I get older. I thought that cerebral palsy wasn’t supposed to get worse?
Although cerebral palsy is non-progressive, meaning the impairment to the brain is unchanging. However, the effects on the body may change over time. Many people find that they experience more physical and emotional difficulties as they get older. Read more about ageing and cerebral palsy.
Call our Helpline for further information or you can also talk to other people with similar experiences on the Scope forum.
What therapy is right for me or my child?
There are numerous treatments and therapies available for people with cerebral palsy and similar impairments. Some are offered via mainstream NHS sources and others are private and there will be a charge. It is important to remember that due to the differing nature of cerebral palsy, some treatements and therapies will suit one individual but not another. You need to find what is right for you or your child and meets individual requirements.
Scope does not endorse or recommend any treatments or therapies and we would always advise consulting a doctor or medical practitioner before undertaking or paying for any therapy. Also check if the treatment or therapy is supported by independent research and/or randomized controlled trials.
Read more about treatments and therapies available in England and Wales for children and adults with cerebral palsy and associated impairments.
I have a question about disability in general – who should I contact?
Scope Response will certainly do its best to help and point you towards other sources of help.
Scope Response provides information, advice and support on cerebral palsy and disability issues for disabled people, their families, carers and professionals.
How to contact us
Freephone: 0808 800 3333
Textphone: If have a communication impairment and want to use a textphone then use Type Talk by dialling 18001 from a textphone followed by 0808 800 3333.
Post: Scope Response, PO Box 833, Milton Keynes, MK12 5NY (Please include SAE for a reply)
You might also take a look at our list of other disability organisations as well as cerebral palsy organisations outside England and Wales.
I am a parent – where can I find more information?
Scope Response is the first port of call for parents. Please download our free parents pack or contact our Helpline for a copy.
We can also put you in touch with a range of Scope services either in your area or which specialise such as your nearest Face 2 Face project, which offers a one-to-one befriending service for parents discovering their child is disabled.
You can also talk to other parents and disabled people in our forum.
I am a professional - how can I get information on training?
Scope provides some bespoke training, consultancy and products for early years professionals working with disabled children. Please contact our Early Years Team.
I have an access problem – what are my rights?
Businesses only have to make reasonable adjustments to accommodate disabled people. Information about what constitutes a reasonable adjustment under both the Disability Discrimination Act and The Equality Act 2010 can be found on the Gov UK website.
If you want to change access in your area, why not join our Campaigns Network?
Can you recommend disability equipment?
Unfortunately we are not able to recommend any particular products but would suggest contacting the Disabled Living Foundation who specialise in providing information on disabled equipment and adaptations. You can contact them via www.dlf.org.uk or by calling 0845 130 9177.
You should also speak to your GP if you need any equipment either in the home or to aid with your mobility. They should be able to advise about local sources to help or refer you to your local Social Services or NHS provision.
Your local DIAL (Disability Information Group) may have details of organisations in your area that hire wheelchairs and mobility scooters.
Where can I find holidays that are accessible to disabled people?
If you have an idea of where you would like to go on holiday in the UK, you could contact a local DIAL in that area, they may have local knowledge of holiday accommodation that is suitable for disabled people.
Read more general guidance on holidays for disabled people and their families plus useful organisations that may be able to help you. A specialist agency such as Tourism for All should be best placed to advise. You could also check Disability Now’s holiday adverts.
Can I take my wheelchair on the plane?
Our experience has been that airlines do not allow people to travel in their own wheelchairs and that the reason given for this is that wheelchairs are not crash tested to airline standards.
Instead, people are normally expected to travel in a standard aircraft seat with additional support and/or harness as necessary. Often these arrangements mean that people are seated in less comfort than they would if they were using their own equipment.