People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
Refer adults with cerebral palsy to a multidisciplinary team experienced in the management of neurological impairments if:
their ability to carry out their usual daily activities deteriorates or
a neurosurgical or orthopaedic procedure is being considered that may affect their ability to carry out their usual daily activities.
Recognise that reassessment by the multidisciplinary team may be needed by adults with cerebral palsy at different points in their lives to ensure that their changing needs are met (for example, pregnancy and parenting, decreased mobility due to hip arthritis, and loss of care and support from a parent).
Commissioners and service providers should develop pathways that allow adults with cerebral palsy access to a local network of care that includes:
advocacy support
learning disability services
mental health services
orthopaedic surgery (and post-surgery rehabilitation)
rehabilitation medicine or specialist neurology services
secondary care expertise for managing comorbidities (for example, respiratory, gastrointestinal and urology services)
social care
specialist therapy services (for example, physiotherapy, occupational therapy, speech and language therapy, and dietetics)
wheelchair services.
Ensure that adults with cerebral palsy, their families and carers, and their primary care teams are provided with information about their local network of specialist services.
Explain to the person with cerebral palsy and their family members and carers their right to a care and support needs assessment, in line with the Care Act 2014, and discuss with them the type of support available (see NICE's guideline on supporting adult carers).
For advice on access to services when adults with cerebral palsy transfer from hospital to home, refer to the NICE guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs. For the principles of social care provision, see the NICE guideline on people's experience in adult social care services.
Recognise and address any personal barriers to accessing primary and secondary care for adults with cerebral palsy. For example, this may involve:
ensuring healthcare professionals have the skills and training to overcome communication difficulties
providing treatment and support for mental health problems
ensuring that the person has an advocate, if needed
providing support to help with social and emotional factors, such as fear of stigma, lack of motivation and exhaustion.
Recognise and address any physical and organisational barriers to accessing primary and secondary care for adults with cerebral palsy. For example, this may involve:
improving physical access to buildings
providing advice and information on accessible transport services, for example, local community transport services
ensuring that appropriate equipment (for example, hoists and wheelchair weighing scales) and adequate changing and toilet facilities are available
extending appointment times, if needed.
When an adult with cerebral palsy is admitted to hospital, the staff should always offer advocacy, and health and personal care (including toileting, washing, nutrition and hydration) even if the person has a family member, carer or advocate there to support them.
Give information to people with cerebral palsy about national screening services (for example, breast, colon and cervical cancer screening) and encourage them to attend screening appointments. Explain that screening services will have to make arrangements to provide screening services that are accessible to people with cerebral palsy.
For young adults with cerebral palsy moving from children's services, ensure that transitions are managed in line with transition to adults' services in the NICE guideline on cerebral palsy in under 25s and the NICE guideline on transition from children's to adults' services for young people using health or social care services.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on access to services and moving into adults' services.
Full details of the evidence and the committee's discussion are in evidence review F1: configuration of services for adults with cerebral palsy and evidence review F2: barriers to access to primary and secondary care.
Consider regular reviews for adults with cerebral palsy, tailored to their needs and preferences. Agree with the person the frequency of review and which services should be involved based on their needs and preferences.
Offer an annual review of the person's clinical and functional needs, carried out by a healthcare professional with expertise in neurodisabilities, for people with cerebral palsy who have complex needs (such as Gross Motor Function Classification System [GMFCS] levels IV and V) and any of the following:
communication difficulties
learning disabilities
living in long-term care settings
living in the community without sufficient practical and social support (for example, being cared for by elderly, frail parents)
multiple comorbidities.
Discuss with the person with cerebral palsy (and their family and carers, if agreed) what information should inform the regular or annual review, and who should receive clinical information following review (for example, their GP).
Record details of the person's review and share the information with relevant people (for example, healthcare professionals and social care practitioners), with the person's permission.
Identify who will be the main point of contact for the person with cerebral palsy (and their family and carers, if agreed) between reviews, and provide information on how to contact them.
If an adult with cerebral palsy chooses not to have regular reviews, offer the person (and their family and carers, if agreed) information on when to contact a healthcare professional and how to access the specialist services that they may need. Ensure that the person's GP and multidisciplinary team are aware that they do not want to be reviewed regularly (with the person's permission).
For adults with cerebral palsy and learning disabilities, follow the recommendations in NICE's guideline on care and support of people growing older with learning disabilities.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on ongoing care.
Full details of the evidence and the committee's discussion are in evidence review F1: configuration of services for adults with cerebral palsy.
Be aware that speech and communication needs in adults with cerebral palsy may change with time and social circumstances.
At every review, ask adults with cerebral palsy (and their families and carers, if agreed) about any changes in their hearing, speech and communication.
Explore with the person with cerebral palsy who has communication difficulties whether they have a potential need for alternative and augmentative communication systems.
Ensure that training is provided for people with cerebral palsy using alternative and augmentative communication systems and their families, carers and other key communication partners in home, care, social or work environments.
Be aware that adults with cerebral palsy and poor intelligibility of speech may still prefer to use speech as their main means of communication.
Refer adults with cerebral palsy who have communication difficulties to speech and language therapy services to assess their need for intervention, which may include:
use of alternative or augmentative communication systems
intensive speech therapy to improve the intelligibility of their speech.
See also communication and information in the NICE guideline on patient experience in adult NHS services.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on communication.
Full details of the evidence and the committee's discussion are in evidence review D4: interventions to promote participation: communication.
Identify and address any factors that prevent people with cerebral palsy from participating in activities, including:
physical barriers, for example, access to buildings
personal barriers, for example, carers with unmet training needs
organisational barriers, for example, policies and situations that put people with cerebral palsy at a disadvantage.
Ask adults with cerebral palsy what they enjoy doing and if they find it difficult to participate in a chosen activity, assess their physical and mental health, and address any factors identified that may be affecting participation, if possible.
If adults with cerebral palsy have complex physical, cognitive, language or sensory needs, consider referral to occupational therapy services to assess the person's functional needs and provide individualised support.
Give adults with cerebral palsy information about assessments of vocational and independent living skills that is tailored to the person's functional abilities and goals (see NICE's guideline on patient experience in adult NHS services for advice on information giving and NICE's guideline on people's experience in adult social care services for details of the information that local authorities should provide).
Refer adults with cerebral palsy who would like to live independently to a professional with expertise in independent living (for example, an occupational therapist). Give information and advice, which could include:
adaptations to their home
housing
leisure activities
statutory welfare benefits.
Refer adults with cerebral palsy who would like to work, or who are already working, to a professional with expertise in vocational skills and independent living (for example, an occupational therapist). Give information and advice, which could include:
continued education
job seeking or access to work schemes
employment support to include workplace training and job retention
occupational health assessment or workplace assessment
statutory welfare benefits
supporting a planned exit from the workforce if it becomes too difficult to continue working
vocational rehabilitation
voluntary work.
See also NICE's guideline on workplace health: management practices for advice on improving the health and wellbeing of employees.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on vocational skills and independent living.
Full details of the evidence and the committee's discussion are in evidence review D1: interventions to promote participation – vocational and independent living skills.
Discuss with adults with cerebral palsy the potential role of electronic assistive technology if they have problems with participation and independence.
If adults with cerebral palsy have complex physical, cognitive, language or sensory needs, consider referring them to services providing information, assessment and provision of electronic assistive technology.
Be aware that using electronic assistive technology may mean that the person with cerebral palsy needs less contact with their carers, which may reduce their social interaction.
If adults with cerebral palsy are already using electronic assistive technology, discuss at every review any:
problems or concerns they have with their equipment
potential changes in their needs.
Ensure that training is provided for adults with cerebral palsy using electronic assistive technology, and for their families or carers, if appropriate.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on electronic assistive technology.
Full details of the evidence and the committee's discussion are in evidence review D3: electronic assistive technology.
Discuss with adults with cerebral palsy (and their families or carers, if agreed) the importance of physical activity in maintaining general fitness and physical and mental health.
Provide information on accessible local services that support people with cerebral palsy to take part in physical activity.
Consider referring people with cerebral palsy to services with experience and expertise in neurological impairments that can provide support with physical activities (including sport) and tasks of daily living. Depending on local service provision and the person's needs, this may be to any of the following services:
physiotherapy
occupational therapy
orthotic and functional electronic stimulation services
rehabilitation engineering services
wheelchair services.
If people with cerebral palsy have problems participating in physical activities because of pain or joint problems that do not respond to any other treatments, consider referring them to a musculoskeletal specialist or an orthopaedic surgeon with experience and expertise in managing musculoskeletal problems in adults with cerebral palsy.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on physical activity, orthopaedic surgery and orthotics.
Full details of the evidence and the committee's discussion are in evidence review D2: interventions that improve or maintain physical function and participation.
Discuss with the adult with cerebral palsy (and their family and carers, if agreed) treatments for spasticity or dystonia, including:
personal treatment goals (which should be documented) and
the benefits and risks of treatments (for example, the risk of deterioration in function) as part of their multidisciplinary treatment strategy.
See also enabling patients to actively participate in their care in the NICE guidelines on patient experience in adult NHS services and shared decision making.
Discuss with the person with cerebral palsy (and their family and carers, if agreed) the balance between the benefits and harms of treating spasticity and dystonia. In particular, explain that some people use their spasticity or dystonia to help their posture and ability to stand, walk or transfer, and that treatment may affect this.
Be aware that adults with cerebral palsy may have both spasticity and dystonia. The severity of symptoms for both conditions may fluctuate in response to health, social and emotional wellbeing, and environmental factors.
At every review, discuss with the person with cerebral palsy (and their family and carers, if agreed) factors that may exacerbate their spasticity or dystonia, such as:
bladder problems (for example, urinary tract infection or bladder stones)
constipation
emotional distress
pain
posture
pressure sores
changes in home or work environments, including seating
medication changes and side effects.
Before discussing further management options for spasticity or dystonia with a person with cerebral palsy:
address any modifiable factors identified that may be exacerbating the spasticity or dystonia and
review their physical management programme.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on agreeing goals for treatment and initial management of spasticity and dystonia.
Full details of the evidence and the committee's discussion are in evidence review A1: pharmacological treatments for spasticity and evidence review A3: interventions for dystonia.
In January 2019, giving baclofen via an enteral feeding tube was an off-label use. See NICE's information on prescribing medicines.
Consider enteral baclofen as the first-line drug treatment for adults with cerebral palsy and generalised spasticity causing:
functional impairment or
pain or
spasms.
Start enteral baclofen treatment with a low dose and increase the dose gradually over about 4 weeks to achieve the optimum therapeutic effect.
If enteral baclofen is ineffective or not tolerated by adults with cerebral palsy and generalised spasticity:
refer the person to a tone or spasticity management service or
discuss other drug treatment options (including other enteral muscle relaxants) with a tone management specialist.
Do not offer diazepam for spasticity in adults with cerebral palsy, except in an acute situation when spasticity is causing severe pain or anxiety.
Do not rapidly withdraw muscle relaxant drugs, particularly if adults with cerebral palsy have taken them for more than 2 months or at a high dosage. Reduce the dosage gradually to avoid withdrawal symptoms.
If using a benzodiazepine (such as diazepam) as a muscle relaxant for spasticity, see NICE's guideline on medicines associated with dependence or withdrawal symptoms for guidance on safe prescribing.
Consider referring adults with cerebral palsy for botulinum toxin type A treatment if:
they have spasticity in a limited number of muscle groups that is:
affecting their care (such as hygiene or dressing) or
causing pain or
impairing activity and participation, or
a tone management specialist agrees that treatment targeted to focal muscle groups is likely to improve their function and symptoms.
In January 2019, there were several different preparations of botulinum toxin type A and the licensed indications varied between them. See NICE's information on prescribing medicines.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on drug treatments for spasticity.
Full details of the evidence and the committee's discussion are in evidence review A1: pharmacological treatments for spasticity.
Intrathecal baclofen
Consider referring adults with cerebral palsy to a tone or spasticity management service offering continuous pump-administered intrathecal baclofen therapy if they still have difficulties with spasticity, despite enteral muscle relaxant drug treatment or botulinum toxin type A treatment.
When considering continuous pump-administered intrathecal baclofen, give the person (and their family and carers, if agreed) information and discuss the procedure with them. This should include:
the need for an intrathecal baclofen test to ensure treatment is suitable
the surgical procedure for implanting the pump
the need for regular hospital follow‑up visits to ensure optimal dosage and pump refill
the risks of implanting a pump and pump-related complications (for example, battery failure or catheter leakage), which can result in baclofen withdrawal or overdose
If continuous pump-administered intrathecal baclofen is being considered for an adult with cerebral palsy, perform an intrathecal baclofen test to assess if it is suitable before implanting a pump. This should involve a test dose or doses of intrathecal baclofen given to the person by lumbar puncture or through a spinal catheter.
Assess the effect of the test dose or doses of intrathecal baclofen on:
reducing increased muscle tone
reducing pain
reducing the frequency of muscle spasms
motor function, such as sitting, standing and walking.
Discuss with the adult with cerebral palsy (and their family and carers, if agreed) their views on the response to the intrathecal baclofen test and whether treatment is likely to achieve their treatment goals.
Selective dorsal rhizotomy
Only consider selective dorsal rhizotomy for adults with cerebral palsy and spasticity if other treatments have been unsuccessful or are contraindicated, and after they have been assessed by a multidisciplinary team with:
specialist training and expertise in the care of spasticity and
access to the full range of treatment options.
See also NICE interventional procedures guidance on selective dorsal rhizotomy for spasticity in cerebral palsy.
Discuss the impact of selective dorsal rhizotomy with the person (and their family and carers, if agreed) when it is a proposed treatment option and provide information. This should include:
that the procedure cannot be reversed
the possible complications
the need for prolonged physiotherapy and aftercare
the possible impact on function
that the long-term benefits are uncertain.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on neurosurgical treatments to reduce spasticity.
Full details of the evidence and the committee's discussion are in evidence review A2: neurosurgical treatments for spasticity.
Refer adults with cerebral palsy and problematic dystonia (for example, causing problems with function, pain or participation) to a tone or spasticity management service to consider treatment options.
Do not prescribe levodopa to manage dystonia in adults with cerebral palsy, except in the rare situation when it is used as a therapeutic trial to identify dopa-responsive dystonia.
In January 2019, this was an off-label use of levodopa. See NICE's information on prescribing medicines.
Do not rapidly withdraw enteral drugs for treating dystonia, particularly if adults with cerebral palsy have taken them for more than 2 months or at a high dosage. Reduce the dosage gradually to avoid withdrawal symptoms.
In January 2019, giving anti-dystonic drugs via an enteral feeding tube was an off-label use. See NICE's information on prescribing medicines.
In January 2019, the recommendations in this section were for an off-label use of botulinum toxin type A. See NICE's information on prescribing medicines.
Only consider botulinum toxin type A treatment for focal dystonia in adults with cerebral palsy when:
the person is under the supervision of a tone or spasticity management service, and it is part of a wider programme of therapy and
focal dystonia is:
affecting their care (such as hygiene or dressing) or
causing pain or
impairing activity and participation.
If botulinum toxin type A is a proposed treatment option, take into account and explain to the adult with cerebral palsy (and their family and carers, if agreed):
that the severity and pattern of dystonia may change after treatment and
the potential impact of treatment on function.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on drug treatments for dystonia.
Full details of the evidence and the committee's discussion are in evidence review A3: treatments to reduce dystonia.
Intrathecal baclofen
Only consider continuous pump-administered intrathecal baclofen if people with cerebral palsy still have difficulties with dystonia, despite having enteral anti-dystonic drug treatment or botulinum toxin type A treatment. Provide information and discuss the procedure, including intrathecal baclofen testing, with the person (and their family or carer, if agreed) as described in recommendations 1.3.13 to 1.3.16.
In January 2019, this was an off-label use for intrathecal baclofen and botulinum toxin type A. See NICE's information on prescribing medicines.
Deep brain stimulation
If adults with cerebral palsy continue to have severe and painful dystonia, despite having enteral anti-dystonic drug treatment or botulinum toxin type A treatment, consider referring them to a specialised centre with experience in providing deep brain stimulation. See also NICE interventional procedures guidance on deep brain stimulation for tremor and dystonia (excluding Parkinson's disease).
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on neurosurgical treatments to reduce dystonia.
Full details of the evidence and the committee's discussion are in evidence review A3: treatments to reduce dystonia.
Discuss with adults with cerebral palsy (and their families or carers, if agreed) that:
their musculoskeletal function may deteriorate gradually, and any changes should be investigated to identify treatable causes
early recognition of bone and joint disorders enables early treatment, which may improve outcomes.
Be aware that low bone mineral density is common in adults with cerebral palsy, particularly in people:
with reduced mobility or reduced weight bearing
taking anticonvulsants or proton pump inhibitors
who have had a previous low-impact fracture.
Consider assessing for risk of fractures secondary to osteoporosis in adults with cerebral palsy. Risk factors to assess include:
needing help with moving or having to be moved, for example, hoisting
history of falls
low BMI
history of low-impact fractures
other medical factors, for example steroid use, that may adversely affect bone health.
For more information about assessment of fracture risk, see NICE's guideline on osteoporosis: assessing the risk of fragility fracture.
Consider a dual-energy X‑ray absorptiometry (DXA) assessment in adults with cerebral palsy who have 2 or more risk factors (see recommendation 1.4.3), particularly if they have had a previous low-impact fracture.
Consider referring adults with cerebral palsy for specialist assessment and management, for example, to a rheumatology, endocrinology or bone health service, if they have:
a high fracture risk or
a positive DXA result.
Be aware that, because of abnormal musculoskeletal development, adults with cerebral palsy are more likely to have bone and joint disorders.
Refer adults with cerebral palsy to a specialist orthopaedic or musculoskeletal service if a bone or joint disorder is suspected and causing pain or affecting posture or function. These may include:
osteoarthritis
cervical instability or spondylosis (including athetosis)
spinal deformity (including scoliosis, kyphosis and lordosis)
subluxation of the hips, wrist and shoulders
biomechanical knee problems
abnormalities of the foot structure.
Do not offer an X‑ray to assess for hip subluxation or curvature of the spine in adults with cerebral palsy, unless the person is in pain or their posture or function is affected.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on bone and joint disorders.
Full details of the evidence and the committee's discussion are in evidence review B1: disorders of bones and joints.
Identify and address mental health problems alongside physical health problems. Recognise that the impact of mental health problems and emotional difficulties can be as important as physical health problems for adults with cerebral palsy.
Follow NICE guidelines on identifying and managing specific mental health problems, and psychological and neurodevelopmental disorders, in adults who have cerebral palsy, for example:
Tailor the identification and assessment of mental health problems and emotional difficulties to the needs and abilities of the person with cerebral palsy, in particular take into account communication difficulties or learning disabilities.
At every review, explore with the adult with cerebral palsy (and their family and carers, if agreed) if they have any concerns about, for example, their:
mood
irritability
behaviour
social interaction
sleep
general level of function.
Involve families and carers, when agreed, in identifying and assessing mental health problems and emotional difficulties in adults with cerebral palsy.
Take into account the specific factors that might affect identifying, assessing and managing mental health problems and emotional difficulties in people with cerebral palsy. These may include:
adverse effects of medicines (including the effects of medicines used for managing mental health problems on motor function or those used for managing motor function on mental health)
communication difficulties
learning disabilities
impaired neuropsychological and executive functions
comorbidities, particularly epilepsy and pain
side effects and drug interactions of multiple medicines (polypharmacy).
Discuss with the adult with cerebral palsy (and their family and carers, if agreed) if physical problems, such as pain, or frustration from communication difficulties or lack of stimulation are contributing to emotional distress or challenging behaviour.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on mental health problems.
Full details of the evidence and the committee's discussion are in evidence review B2: monitoring and assessing mental health.
Offer adults with cerebral palsy a regular weight check, and BMI or another anthropometric measurement, and identify people who may be at risk of undernutrition or obesity (see also the NICE guideline on obesity: identification, assessment and management).
At every review, discuss with adults with cerebral palsy (and their family and carers, if agreed) whether they have difficulties with eating or if there have been any changes in their eating habits or bowel function. Ask about issues including:
changes in appetite
changes in the person's ability to feed themselves
constipation
coughing or choking when eating
food refusal
increased frequency of chest infections (which may be related to swallowing difficulties or gastro-oesophageal reflux)
an increase in the length of meal times.
Discuss if any of the following factors might be affecting the person's appetite, eating habits or weight:
changes in carer support
depression
pain
reduced physical activity
side effects of medications.
Be aware that adults with cerebral palsy with severe spasticity and dyskinesia may have an increased metabolic rate and a higher risk of malnutrition.
Follow the recommendations on screening for malnutrition, indications for nutrition support, and education and training of staff and carers related to nutrition, in NICE's guideline on nutrition support for adults.
Refer adults with cerebral palsy to a relevant clinical specialist, such as a dietitian or speech and language therapist, if assessment suggests they have difficulties with eating or malnutrition.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on difficulties with eating and nutritional problems.
Full details of the evidence and the committee's discussion are in evidence review B3: monitoring feeding and nutritional problems.
Be aware that adults with cerebral palsy are at increased risk of respiratory failure. Symptoms may include:
breathlessness
changes in behaviour (such as irritability or inability to concentrate)
daytime drowsiness
worsening epilepsy
headaches on waking
increasing frequency of chest infections
poor sleep pattern
sleep apnoea.
Recognise that some risk factors for respiratory impairment are more common in adults with severe cerebral palsy (GMFCS level IV or V), such as:
aspiration pneumonia
chronic cardiorespiratory disorders (for example, cor pulmonale or pulmonary circulation hypertension)
chronic suppurative lung disease
kyphoscoliosis
poor saliva control
recurrent chest infections.
Refer adults with cerebral palsy and persistent or multiple signs and symptoms of respiratory impairment, or risk factors for respiratory impairment (see recommendations 1.4.22 and 1.4.23) to specialist services.
Consider assessment with spirometry for adults with cerebral palsy who are suspected to be at high risk of respiratory impairment.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on identifying and monitoring respiratory disorders.
Full details of the evidence and the committee's discussion are in evidence review C1: protocols for monitoring respiratory health.
Offer vaccinations to adults with cerebral palsy and their carers, in line with the national immunisation programme (see the Green Book, Public Health England for further information).
Do not offer prophylactic antibiotics for lower respiratory tract infections in adults with cerebral palsy, unless:
the person is at high risk of respiratory impairment (see recommendation 1.4.23) and
they are offered on the advice of a respiratory specialist with expertise in neurodisability management.
If an adult with cerebral palsy is at high risk of lower respiratory tract infection, consider a prophylactic physiotherapy chest care review. This may include:
postural management
advice on exercise
advice on training and care for family members and carers.
Refer adults with cerebral palsy and recurrent chest infections, if dysphagia is suspected, to a speech and language therapist with training in dysphagia to assess swallowing.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on prophylactic treatments for respiratory infections .
Full details of the evidence and the committee's discussion are in evidence review C3: prophylactic treatments for respiratory disorders.
If a person with cerebral palsy has symptoms of respiratory failure, or is at high risk of developing respiratory failure, discuss their management plan with them (and their family or carers, if agreed), including:
assessing the effectiveness and tolerability of treatment
treatment goals and escalation plan of treatment
managing complications
options for managing progressive respiratory failure.
Consider home-based non-invasive ventilation for adults with cerebral palsy and respiratory failure.
If a person with cerebral palsy is having home-based non-invasive ventilation, carry out a review with a multidisciplinary team every 3 to 6 months. Assess and discuss with the person (and their family and carers, if agreed) the effectiveness, tolerability and whether agreed goals are being met.
If a person with cerebral palsy is having non-invasive ventilation, discuss with them (and their family or carers, if agreed) their preferences for future treatment. Agree a plan for what should happen if an intercurrent infection (occurring during the progress of respiratory failure) causes an acute deterioration in respiratory function and record this in the person's advance care plan.
If the agreed treatment goals are not met by non-invasive ventilation, consider alternative treatment options, such as tracheostomy or supportive care, and discuss them with the person with cerebral palsy, taking into account their preferences for future treatment (see recommendation 1.4.33).
If an adult with cerebral palsy has sleep apnoea, follow the recommendations on continuous positive airway pressure in sections 1.5 and 1.6 of the NICE guideline on obstructive sleep apnoea/hypopnoea syndrome and obesity hypoventilation syndrome in over 16s for when to offer assisted ventilation.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on discussing the management of respiratory failure, and assisted ventilation for respiratory failure and sleep apnoea.
Full details of the evidence and the committee's discussion are in evidence review C2: assisted ventilation for respiratory failure.
Xeomin (botulinum neurotoxin type A) is recommended as an option in NICE technology appraisal guidance for treating chronic sialorrhoea caused by neurological conditions in adults. For full details, see the guidance on Xeomin (TA605, 2019).
Be aware that some adults with cerebral palsy have difficulty communicating or are unable to communicate that they are in pain.
Assess for the presence, severity and location of pain in adults with cerebral palsy using pain assessment tools such as:
numerical rating scales
visual analogue scales
faces pain scales
body maps.
If an adult with cerebral palsy has difficulty communicating:
discuss with their family or carers how best to identify pain and include this information in their care plan
use observational or descriptive pain scales to assess the presence, severity and location of pain.
See also communication in the NICE guideline on patient experience in adult NHS services.
Ensure that health and social care staff (and families and carers, if appropriate) caring for adults with cerebral palsy have access to a range of pain assessment tools and that they have been trained in their use.
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on pain.
Full details of the evidence and the committee's discussion are in evidence review E: identifying pain, such as musculoskeletal and gastrointestinal pain.
Defined by international consensus as: 'A process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences about future medical care. The goal of an advance care plan is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.' See Defining advance care planning for adults (Sudore et al. 2017).
Alternative and augmentative communication systems are a variety of methods (for example, signing, use of visual symbols and eye gaze technology) that can be used to help people with disabilities communicate with others. These systems or methods of communication can be used as an alternative to speech or to supplement it.
Body measurements that include weight, height, knee height, mid-upper arm circumference, waist circumference, head circumference and skinfold thickness measurements.
In the context of cerebral palsy, comorbidities are health problems caused by the brain disorder that also caused the motor impairment that is the core problem of cerebral palsy, but are not a direct complication of the motor disorder. For example, visual impairment and epilepsy are described as comorbidities because they are caused by the brain disorder. Hip dislocation and scoliosis are complications of the motor disorder and would not be described as comorbidities.
Any piece of equipment or system that is used to increase, maintain or improve function in people with disabilities, and is electronically powered (mains electricity and/or battery). These may include communication aids, environmental controls and access to computers.
Drugs given by mouth (oral), or via a nasogastric tube, gastrostomy tube or jejunostomy tube.
A record of the interventions that a person would find acceptable, in line with their values, goals and preferences. It can be used to indicate that more intensive or invasive interventions would be unacceptable to the person. For example, an escalation plan of ward-based care only, indicates that the person would not want invasive monitoring, intubation and ventilation, which are undertaken as part of intensive care.
Cognitive processes that are important for the control of behaviour. These include planning, organising and monitoring behaviours leading to goal attainment, inhibitory control, working memory and cognitive flexibility. As a result of injuries to the frontal lobes of the brain, these processes can be disrupted.
A 5‑level clinical classification system that describes the gross motor function of people with cerebral palsy based on self-initiated movement abilities. People assessed as level I are the most able and people assessed as level V are dependent on others for all their mobility needs.
The GMFCS is not validated for use in adults. However, the GMFCS level at age 12 has been shown to be a good predictor of mobility into adulthood, especially at the milder and most severe levels. It is used here in the absence of a validated system for use in adults because it is readily understood by people with cerebral palsy, their families and carers, and health professionals involved in the care of adults with cerebral palsy.
People who regularly interact with the person with cerebral palsy in any environment. Communication may be by speech, using communication aids, signing, facial expression or a combination of these.
Centres that design, develop and adapt technological solutions to overcome challenges to function, activity and participation for individuals with disability. This includes assessment and provision of assistive devices to help with posture, mobility and communication (for example, electronic assistive technology).
A planned clinical appointment between an adult with cerebral palsy and a healthcare professional or multidisciplinary team. They may explore common concerns, physical symptoms, mental health, pain, nutrition and communication to ensure an individualised approach to care. The healthcare professional may be a GP, specialist nurse, rehabilitation specialist or therapist. This also allows the opportunity to address general health issues that affect people as they grow older.
Part of a 24‑hour posture review that considers all the relevant postures that an individual has the ability to adopt over the 24 hours of any given day, including postures to allow for participation in daily activities. The 3 core postural orientations are lying, sitting and standing. An example of a postural need is support and positioning in bed.
Care focused on relieving symptoms caused by serious illnesses such as respiratory failure. It can be given at any point during a person's illness to help them feel more comfortable and improve their quality of life.
Moving from one surface to another (for example, from a bed to a wheelchair) independently or with assistance.