Where are you in your journey?
If your child has recently received a diagnosis of cerebral palsy and you would like to know what support and help are available, you can learn more below.
Have you received a diagnosis?
Coming to terms with your child’s diagnosis can take time for you and your family. Please see below for answers to some of the questions that you may have along with links to practical information on the care, legislation, financial, parent and family support available as well as advice from other parents.
Commonly Asked Questions
If you are given a diagnosis of cerebral palsy, don’t panic – the multi-disciplinary team should answer any questions you may have and discuss with you what support will be put in place for your child and who will provide it. They will also inform your GP and your local paediatric services team.
You will be referred to your local paediatric services team which includes paediatricians, health visitors, physiotherapists, occupational therapists, speech and language therapists and other professionals – see below for description of the work of these professionals. You may also be referred to your local children’s services team who can provide practical support and help. These local teams should work together and with you to devise a care plan to help you with your child’s health, treatment, therapy and day to day needs such as equipment in the home and mobility.
Your local paediatrician will be responsible for co-ordinating your child’s health needs related to cerebral palsy on a day-to-day basis and will liaise with the specialist team who provided the diagnosis should further tests or follow up be required. This team will invite you for monitoring visits at 6 monthly or annual intervals. Your GP will remain your first point of call if your baby is unwell.
This can be a very frightening, exhausting and difficult time for parents and families. Whilst there will be local paediatric team to provide therapy and support, services are often very stretched and many parents say that they take the lead in co-ordinating and managing support for their child and, in a sense, become ‘project managers” of their child’s condition and needs. Parents are naturally the experts on their baby or child and will instinctively know when extra help is needed. Always act on your needs and instincts and don’t wait for a situation to deteriorate for yourself, your family or your child before seeking help from your doctor or care team and other support networks.
As you as a parent will be at the centre of your child’s care and future development, it is vital that you receive the care and support that you need to perform this important and demanding task. Good therapeutic and medical intervention will always ensure that you as the parent is at the centre of any decision making and therapeutic care for your child.
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.
Types of cerebral palsy – these terms are used to describe different types of cerebral palsy:
- Spasticity: high muscle tone (stiffness) with rigid, 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 muscle 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.
Muscle tone: A child with cerebral palsy will often have abnormal muscle tone in their limbs (arms and legs) and/or trunk (central part of the body). Tone is a term which describes the state of the tension in a muscle at rest.
Abnormal muscle tone can make smooth, co-ordinated purposeful movements difficult. Muscle tone can be described as:
- High tone (stiff or rigid)
- Low tone (floppy)
- Mixed tone (eg, stiff in arms/legs but floppy in trunk)
- Fluctuating (moving from stiff to floppy on movement)
Tone can be graded as
Different areas of the body may be affected and depending on how this appears in the body will be described as:
- Hemiplegia – one side of the body affected; right or left
- Diplegia – mainly affecting the lower body – legs
- Quadriplegia – affecting the whole body
For further information about cerebral palsy, see: NHS | Treatment | Cerebral palsy
There is often not just single cause of cerebral palsy and it can take some time to accurately establish the exact cause. Also, in almost half of babies who go on to have a diagnosis of cerebral palsy, there will be no obvious risk factors present. However, the following are risk factors which may result in cerebral palsy:
- Interruption of the blood flow or oxygen to the baby’s brain before, during or after birth
- Low birth weight
- Maternal disease, infection or pre-eclampsia during pregnancy
- Haemorrhages (blood loss during pregnancy or in baby after birth)
- Toxins passed to the baby during pregnancy, for example tobacco, alcohol, prohibited drugs
- Heart/respiratory distress
- Blood group incompatibility
- Multiple births
- Maternal history of miscarriage or still birth
- Genetic predisposition
- Post-natal infection, stoke, accidental or non-accidental brain injury in baby
It is very important not to jump to conclusions or blame yourself if your baby has signs of cerebral palsy. The exact cause will be different for every child and sometimes there will be no definite answer. Once a detailed assessment has been carried out, your medical team may be able to explain possible causes for your baby’s difficulties. However the most important thing is to ensure that you and your baby gets the help you need as quickly as possible to reduce the impact of their difficulties on their development and wellbeing.
Make sure that continue to play with, laugh with and cuddle your child as you always have. All babies need physical contact and a relaxed home atmosphere, so don’t be afraid to play with your child as much as you can, bearing in mind any specific handling advice you may have had from professionals or therapists. Try not to let your child pick up on any anxiety that you will inevitably feel and don’t talk about their condition in front of them until they are mature enough to understand and feel part of the conversation.
Liaise closely with your paediatric care team to ensure that your child receives the care and intervention they need to thrive. If you wish to, look into organisations which can offer additional support and help and specialist input.
You could contact a specialist centre which provides therapy for children with developmental delay or cerebral palsy and tell them about your child. They will be happy to talk to you and may be able to offer you sessions in which qualified therapists will show you how to best help your baby or child with their movements and general development. Some of these centres offer teletherapy consultations if you are unable to travel in person.
Many of these centres are charities who provide free services or charge a small fee.
Contact The 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.
The “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. You could also look at local groups such as baby massage, swimming, Tumble Tots etc. Which will be beneficial to your baby’s development. Your local children’s centre or health visitor may be able to give you details of suitable early years organisations.
Look after your own well-being and health including your back and posture when lifting your child to avoid injury and pain.
If your child has received a diagnosis of cerebral palsy, you will be offered the following therapies to help support your child’s play and general development, speech and language development, movement skills and mobility.
- Occupational therapy
- Speech and Language therapy
The type of therapy you will be offered will be assessed according to your child’s needs.
The therapists should work together as a team to promote continuity and common goals for you your child.
These therapies are offered free of charge through your local NHS children’s therapy services/child development centre, however there may be a waiting list for therapy from the NHS therapy services. If you are concerned about the length of time you are waiting for an initial assessment, you should contact the local child development centre and/or your GP.
The therapists should work and communicate together as a team (sometimes known as a multi-disciplinary team or MDT) to promote continuity and common goals for you your child.
If you wish to pay for private therapy, you should always ensure that the therapist or therapy service is registered with The Health and Care Professionals Council (HCPC) which regulates the quality of therapy provided.
Paediatric physiotherapists work with children privately, or through the NHS, in many different settings. These may include the child’s home, nursery or school. However, some children may have needs that require their physiotherapy to be carried out in a clinic or hospital.
Children’s physiotherapy, or paediatric physiotherapy, is a specialised area of physiotherapy targeted at the unique needs of babies, children and young adults. Paediatric physiotherapists undergo significant further training to allow them to manage the physical, mental and educational needs of children.
Children with cerebral palsy may have developmental, neurological, respiratory or musculoskeletal difficulties and paediatric physiotherapists are well equipped to assess and treat a wide range of conditions in partnership with the child and their parents.
- Developmental delay in the achievement of head control, sitting balance, crawling and walking skills
- Prevention of muscle tightening which can lead to stiff or fixed joints (contractures)
- Therapy following orthopaedic procedures and surgery
- Difficulties coordinating movement
- Breathing problems
- Assessment for special equipment and supportive seating to help with postural control and enable mobility
Before the physiotherapist begins the physio sessions, a full assessment will be carried out. The assessment aims to gather as much information as possible to help the physiotherapist identify areas that need improvement, and determine how this can be achieved. This information is used to develop a carefully crafted plan of treatment and exercise activities most effective for that particular child.
Attention is also given to ensure that all activities are safe, as well as stimulating and fun, to sustain engagement and motivation throughout the programme.
As with adults, physiotherapy with children involves the use of a wide variety of different activities, ranging from isolated exercises to negotiating obstacles while walking to ball exercises, climbing, swimming and more.
These activities, which are all tailored to the child’s specific needs and therapy goals, fall into five main categories:
- Movement and exercise, such as muscle strengthening, stretching and neurological movement techniques such as Bobath
- Respiratory care, including chest clearance and fitness training
- Manual therapy, where the therapist uses their hands to improve joint and muscle movements
- Splinting and orthotics
- Hydrotherapy, in which physiotherapy exercises are performed in water
Physiotherapy for babies
Paediatric physiotherapists do a significant amount of work with very young babies.
Neurological problems such as cerebral palsy may present with abnormal postures and movement. Parents are taught to stretch out tight structures, encourage normal movements and discourage abnormal postures and movement patterns.
Physiotherapists manage these conditions routinely under the supervision of an orthopaedic consultant and review babies regularly to ensure a good result.
Local Physio | Children’s Physiotherapy
Occupational therapists (OTs) work with babies, children and young people and their families, as well as the child’s carers and teachers, to promote active participation and independence in their ‘occupations’ of daily life. Occupations include sleeping, eating, playing, learning, self-care and socialising.
Occupational therapists who work with children are knowledgeable about a child’s sensory, motor, cognitive, emotional and behavioural development, and about how to promote the child’s engagement, exploration and skill acquisition.
Occupational therapy includes:
As cerebral palsy can affect children in very different ways, the OT will start with a full assessment. The focus of the assessment will be as much about understanding the child’s abilities as understanding what they are finding difficult and why. During the assessment, the occupational therapist will also want to gain an understanding of the child’s own goals as well the goals of their parents, carers or school.
OTs assess skills such as play, social interaction, use of tools/toys, hand skills, dressing both in the child’s home and nursery environments by observing the child’s participation in daily activities. The therapist will include the child, family, carers and educators when setting occupational therapy goals.
OTs design bespoke therapeutic activities and programmes to improve the child’s ability to perform daily activities and achieve the occupational therapy goals set. They also support the development of individualised strategies for use by family, carers and educators.
Outcome measures (targets) are used to review progress, and changes are made to the occupational therapy goals to reflect progress. Help can be provided for ‘signposting’ to other services that may be appropriate for the child.
Once assessment information is obtained, the occupational therapist will be able to provide tailored advice, support and intervention. Below are some examples of how an occupational therapist can assist:
- Improve the child’s skills by adapting tasks, teaching and training parents and carers or advise on appropriate assistive technology to maximise independence and increase participation
- Facilitate safe access to pre-school, school and home environments by providing advice on structural building changes and/or equipment
- Facilitate access to the school curriculum and support school staff in understanding how to best support the child’s education
- Reduce the risk of fixed postural changes over time by providing advice on appropriate equipment and techniques to maintain postural alignment. This includes supportive seating, splinting or night time positioning such as sleep systems
Speech and language therapists work with babies, children and young people who have communication problems, and eating, drinking or swallowing difficulties. Speech and language therapists can assess, deliver therapy, advice and support speech, language, interaction skills, alternative and augmentative communication (AAC) and eating, drinking, swallowing difficulties. They work closely with families, carers, other professionals and education staff to ensure the child can have ‘a voice’ and communicate as well as socialise to the best of their abilities.
The SLT’s aim is to enable the child to develop the best functional communication skills they are able to in order to express emotions and needs, interact socially, participate in school and the wider community and maximise agency and self-advocacy.
Speech and Language therapists work closely with other members of the team as well as parents and caregivers to identify and address barriers to a child’s ability to communicate and ensure that children develop robust communication systems that enable them to express themselves with confidence using speech and/or augmentative and alternative communication (AAC) methods.
Your first speech and language therapy appointment will involve assessment. An assessment may involve looking at picture books, playing with toys or talking to the therapist, depending on the child’s age. The SLT will also talk to you about your concerns and ask you questions about your child’s development. Be prepared to describe your child’s communication with examples of the impact that this makes to everyday life.
The SLT will try to work out if and where your child may be struggling with talking and understanding, based on the assessments carried out. The impact of any difficulties with listening, understanding, talking and interacting on a child’s ability to learn will also be explored in liaison with you and other professionals. Further assessments or referral to other agencies may be recommended if more information is needed.
Following diagnosis, recommendations will be made about what support your child may need. This may include direct support from a SLT, individual or group support, and/or a programme of activities for you and others to carry out. Support may be clinic and/or school based. It may involve support from others like a specialist teacher.
The type and extent of support will depend on for example: your child’s age, and the type and severity of the difficulties they have.
SLTs usually work closely with parents and nurseries/schools to support children through joint working, training those around the child and direct work with the child.
The length of time that your child will be supported will depend on the type of needs they have, how severe those needs are and what services are available locally.
You can expect the SLT to give you clear information about how often they plan to see your child and where (home, clinic or school), giving you clear feedback during or after each session wherever that may be.
What is conductive education?
Conductive Education (“CE”) is a comprehensive method of teaching and learning by which individuals with neurological and mobility impairment, such as cerebral palsy in childhood, or Parkinson’s, stroke or multiple sclerosis in adulthood, learn to specifically and consciously perform actions that individuals without such impairment learn through normal life development.
CE teaches people who have neurological movement disorders, how to control their bodies more effectively and subsequently lead more independent lives.
CE is built on the assumption that the damaged nervous system, which causes motor dysfunction, can be overcome by using specialised learning strategies and that the nervous system can generate new neural pathways.
What is a Conductor?
A Conductor is the recognised professional term for someone who is trained, to degree or higher level, in the field of conductive education. Conductors are specialists that are trained to observe the potential in an individual; to nurture their development, devise structured programmes and facilitate learning to enable success. CE combines education, psychology and medical science and considers all aspects of the person simultaneously.
Some children with cerebral palsy may have challenges with receiving and processing sensory information. Sensory integration therapy aims to help children with sensory processing issues (which some people may refer to as “sensory integration disorder”) by exposing them to sensory stimulation in a structured, repetitive way. The theory behind it is that over time, the brain will adapt and allow children to process and react to sensations more efficiently.
Sensory integration (SI) therapy should be provided by a specially trained occupational therapist (OT). The OT determines through a thorough assessment whether your child would benefit from SI therapy. In traditional SI therapy, the OT exposes a child to sensory stimulation through repetitive activities.
The OT gradually makes activities more challenging and complex. The idea is that through repetition, your child’s nervous system will respond in a more “organised” way to sensations and movement.
Hippotherapy is a physical, occupational, and speech therapy that utilises the natural gait and movement of a horse to provide motor and sensory input. It is based on improvement of neurologic functions, and sensory processes, and used for patients with physical, and mental disorders.
Hydrotherapy is a therapeutic whole-body treatment that involves moving and exercising in water; essentially physiotherapy in a pool. Hydrotherapy pools are usually different from ordinary pools – the temperature, pressure and movement of water is controlled and changed according to who’s using the pool, and why.
The importance of toys
Toys are frequently used during activities with very young children as a way to stimulate play and curiosity, but also to achieve specific health targets.
Research has shown that encouraging toddlers with delayed motor development to reach and grasp for toys is an effective way to improve balance, mobility and fine motor skills during seated everyday tasks like eating and bathing.
Your therapists will be able to advise you on what type of toys and equipment would be appropriate for your baby/child.
The following websites have useful information about toys and equipment.
It is important to know that however worried you might be, you are not alone and there is help available at every stage. It is best to start with the health professionals who know you and your baby, but there are also many online forums and websites such as this one which can give you information and support. You can also contact specialist early intervention services who will be happy to answer any questions you may have. Also, parent groups, special needs play groups or online chat lines or groups can be a great source of support.
If you have any concerns about the medical care that you or your child received during pregnancy, labour or after birth, in the first instance you should speak directly with your medical team, ie, midwife on call, obstetrician and/or neonatologist, maternity unit patient liaison team or your GP or health visitor to clarify any questions and discuss your concerns.
If you still have concerns, you may wish to seek independent legal advice. There are numerous law firms who specialise in this area (clinical negligence) and you should speak to more than one firm before deciding which is the best one for you. They should provide you with a free initial consultation from a specially trained legal specialist.
The information that follows has been provided by Enable Law.
If a child has cerebral palsy and their medical treatment before, during or after birth may be to blame for their condition, there could be a valid claim.
Common valid reasons for a claim include mistakes during pregnancy or labour that led to a child’s brain injury – such as where the baby suffered reduced blood or oxygen supply (temporary asphyxiation) as a result of failures.
This may include failures to:
- deliver a baby early enough via caesarean
- monitor the baby’s heartbeat
- respond appropriately to the umbilical cord being caught around the baby’s neck
- follow medical guidelines to ensure the safety of a child
- fully inform parents about risks such as those involved in choosing to give birth away from a hospital.
If you are unsure whether the harm to your child was avoidable or not, the law firm should be able to help.
In most circumstances it will cost you nothing to investigate a claim. The law firm will provide free initial advice about whether there is likely to be merit investigating a claim and how it can be funded. Enable Law | Cerebral Palsy Claims
This information note explains various ways a claim can be funded: Enable Law | How much will it cost me to bring a claim?
Whilst your child is under 18, in normal circumstances, you as a parent can make decisions including managing any health and financial arrangements on their behalf. However, you may be worried about what would happen to your child’s health or financial welfare if you should die or be unable to make decisions on their behalf, or if you believe that your child would not be able to manage their health needs or finances once they have reached the age of 18. You can get advice about the financial and welfare decisions that you may have to make for your child from solicitors who specialise in mental capacity.
Please ensure that you always speak with more than one source of information and that that source of information is approved by a governing body.
The Solicitors Regulation Authority regulates solicitors in England and Wales. A solicitor will be able to help you with information about:
- Powers of Attorney
- Living Wills
- Deprivation of liberty issues
- Property and financial issues
- Health-related decisions
- Managing Benefits
Scope also provides information about benefits and financial support available for families with disabled children: Scope UK | Benefits and money as well as information on legal advice available: Scope UK | Legal advice
A Parent's Story
“Cerebral palsy is a lifelong condition, there is no cure, and despite it being the most common physical disability in childhood there was little support in helping us as parents adjust to the new reality of our lives; a lifelong commitment as carers. That may now change thanks to the work and efforts of Action Cerebral Palsy; they are working hard to try to ensure that no more parents face the anxiety, loneliness and isolation that we have felt and that children and their families have the support and help that they need at every stage of their journey.”
– Helen Hunt, mother of Wilf
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