The adult cerebral palsy and neuro-disability team at the National Hospital for Neurology and Neurosurgery have written this booklet for our patients, their family and carers. It is not intended to replace discussion with your consultant.
If you have any questions please do not hesitate to contact a member of our team, who will be happy to answer them for you
What is cerebral palsy?
Cerebral palsy (CP) is a permanent disorder affecting movement in different parts of the body often accompanied by disturbances of sensation, cognition, communication, perception, behaviour and musculoskeletal problems.
CP can present differently according to which part of the brain was affected during development and the cause of the brain injury. Sometimes only one side of the body is affected (hemiplegia) or both legs can be stiff (spastic diplegia). The more severe forms can affect all four limbs and be termed quadriplegia.
Often the pattern of movement problems may be referred to as:
Spasticity
The main feature of spasticity is stiffness or increased resistance when attempting to move a limb or joint, this is usually worse in one direction (for example trying to straighten an arm or bend a leg). Other features that may be associated with it include spasms, pain, weakness and clonus (repetitive jumping or bouncing of the foot for example).
Dystonia
This is also muscle stiffness but can affect all muscle groups causing the limb to be held in a stiff position which can be hard to move in any direction. Sometimes the dystonia varies so the limb can change its abnormal posture at different times of the day or when doing activities.
Dyskinesia
These can be recurring, involuntary, uncontrollable movements and abnormality in tone which varies over time and can involve any part of the body. They may be associated with facial or tongue movements too.
Ataxia
This can cause loose muscles affecting balance and coordination and trouble in fine motor skills.
The type and severity of symptoms in CP can vary widely and may change over time, common problems include:
- Learning disability
- Behavioural, emotional and mood issues
- Speech difficulties
- Epilepsy
- Swallowing difficulties, drooling
- Visual or hearing impairments
- Spasticity, spasms
- Weakness of the arms and/or legs
- Uncontrolled movements
- Walking difficulties
- Pain
- Fatigue
- Sleep disorders
- Bladder and bowel issues
There is no cure for cerebral palsy but there is a lot we can do to help you manage your symptoms.
Transition of care involves planning, preparing and moving an individual’s care from children’s (paediatric) services to adult services. This is a very significant time as any care gap can lead to negative long term consequences, understandably it can be an anxious time for people with CP and their families.
Your paediatric team will guide you and your family through your transitional pathway. Once you and your family are ready for the transition, there may be an opportunity to meet your adult CP team clinical nurse specialist during your last paediatric clinic appointment. We understand it can be difficult moving but we will work closely with your paediatric team and hope to make this move as easy as possible for you and your family.
The adult CP service at NHNN has a multi-disciplinary team whom you will meet on your first clinic appointment in the adult service, the assessment will aim to review all aspects of your care and make recommendations tailored to your needs. We will provide a long-term point of contact for any concerns or queries and help coordinate your care with other community services, specialist centres and other healthcare professionals.
Transition from children’s to adults’ services: www.
We all know that health screening for common cancers such as breast, cervical prostate and bowel is extremely important and saves thousands of lives. However, it is also a fact that people with cerebral palsy are less likely to take up the offer of these screening tests. This might be due to difficulties accessing appointments because of travel, mobility, communication difficulties or wheelchair access.
Alternatively, it could be embarrassment at not being able to get in to the ‘standard position’ or the facility not having a hoist or the expertise to help you get into the position. It is important you discuss your concerns with your GP or nurse who will help you organise an appointment at a suitable location with extra time ensuring the team can meet your needs. Please do not put it off, early screening could help to diagnose which means a much better chance of effective and simpler treatment.
- Breast screening helping you decide
- To find details of your local breast screening unit
- Supporting women with learning disabilities to access breast screening
- This breast screening film focuses on women with learning disabilities
- Cervical screening helping you decide
- Bowel cancer screening
- Prostate Cancer and Social Security Disability
- Prostate Cancer UK
Why do I feel like not eating anything?
If you experience feeding difficulties or have poor oral-motor function affecting your chewing, swallowing or eating, perhaps requiring chopped or mashed foods, your nutritional status might be at risk. Malnutrition can influence your general health and therefore a nutritional assessment is important and should be individualised to your needs and conditions. A regular weight check is ideal, your nurse can help you find a suitable location for you to be weighed if you need hoist facilities.
Your GP can refer you to a local nutritionist/dietician who can do further assessment and can recommend a personalised care plan for your needs.
Do I need to worry about my teeth?
It is important not to overlook your oral health. Any mouth problems can have a negative impact on your nourishment and quality of life; for example conditions like drooling, teeth grinding, jaw clenching and pain can affect your sleep. A change in your oral/facial structure may also affect your breathing especially at nighttime, snoring can be a symptom of sleep apnoea.
Good daily dental/oral hygiene is crucial, you might find brushing and flossing independently can be challenging due to your physical disability so please do ask for help from your family or carer. It is important for you to attend an annual check up with your general dental practice.
If you and your family are concerned about visiting the dentist perhaps due to uncontrollable body movements, learning disability or other concerns please inform your GP and they can refer you to a specialist dental service.
- Dental treatment for people with special needs
- Dental care for people with special needs
- Oral care and people with learning disabilities
Can Vitamin D help with my bone health?
Inadequate vitamin D levels may affect your muscle strength and can lead to muscle weakness and pain. Studies have shown that adults living in the UK are at high risk of vitamin D deficiency and this is more so for people with disabilities who may be less active. NICE guidelines recommend taking a daily supplement of vitamin D to help with your bone health.
Do talk to your GP if you have concerns, they may suggest a blood test and will help guide whether you need vitamin D supplements. If you have broken a bone this may also indicate osteoporosis so please discuss this with your GP as you may need a DEXA scan to investigate further.
Why do I have difficulty in seeing and hearing?
Individuals with cerebral palsy are at greater risk of having visual and/or hearing impairment. If you have any concerns please request an assessment. Like all adults it is important to see an optician for a routine eye check every 1-2 years.
Specialists can complete an assessment by adapting tests to your impairment: intellectual, mobility and behavioural difficulties. If you or your family has any concern with your vision and hearing it is important to contact your GP or optician.
Why do I feel anxious and depressed?
Feelings of being anxious or depressed are not usually linked to the level of your disability but can be due to your level of stress and coping skills, your fatigue and pain management or degree of family and social support.
If your anxiety and depression is untreated, this can contribute to poor physical health, reduced social interaction and quality of life. People with CP can also experience difficulties controlling their behaviour with for example mood swings and anger management. Recognising that you are at risk and being alert to symptoms of behavioural and emotional problems are an important part in improving your mental health.
You can discuss this with your GP, psychologist or social worker who can help you with early interventions to help prevent prolonged and debilitating mental health conditions. Some people find that doing mindfulness, meditation or yoga can be helpful. Individuals can also self refer for talking therapies when they feel it would benefit them.
- Anxiety disorders
- Anxiety UK
- Depression in adults: recognition and management
- Young Minds
- IAPT (Improving Access to Psychological Therapies) services offer NICE
Whom can I talk to about my sexual health?
People with physical disability experience the same sexual thoughts, feelings and behaviours as anyone else. Sexuality affects everyone, it is a personal and a private affair.
Disabilities can impact on relationships and sexual function in many ways, these include; uncontrollable muscle contractions or movements; the impact of having a stoma, supra public catheter or indwelling catheter; being hoist dependent; difficulty in undressing or getting into a position; continence issues and concerns regarding sensation, fatigue or pain.
If you have, any questions you wish to ask about your personal relationships or problems with your sexual function please discuss these with your GP, a continence specialist, sex therapist or a support group for suggestions on how to overcome challenges.
Where can I meet other adults with CP?
You can meet other individuals with CP by joining support groups. Here you can be provided with confidential support, advice at any stage, you can share and learn some practical tips or talk to someone especially in times of difficulty.
Where can my family get support?
Parents and families of people with a disability can go through different challenges, for example; how to prepare them for adulthood or helping them find support in their community. Some parents suffer in silence but they may also benefit from support concerning their feelings and concerns and gain simple practical advice that will help them cope with all the challenges ahead.
If you need support, there are online parents or carer support groups who can provide help and reassurance.
Please check our website for specific information/ fact sheets on the following:
- Post impairment syndrome
- Exercise and activities
- Activities for daily living
- Fatigue management
- Bladder and bowels
- Saliva management
- Womens Health and cerebral palsy
Clinical nurse specialist for adult cerebral palsy and neuro-disability service
Direct line: 020 3448 3439
Office hours are 8.30 to 16.30 Monday to Friday.
If there is no-one there, available please leave a message on the answer phone/ voicemail and someone will get back to you as soon as possible. This line is confidential. If your query is urgent please contact your GP.
If your query is urgent please contact your GP.
Follow us on X (formerly Twitter): @CP_UCLH
Team email: uclh.cpteam@nhs.net
Address:
The adult cerebral palsy and neuro-disability team
National Hospital for Neurology and Neurosurgery, Box 113, London, WC1N 3BG
Website: https://
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Page last updated: 07 February 2025
Review due: 01 February 2027