Cerebral palsy

Abstract

Cerebral palsy is a relatively common cause of physical and neurological disability. The health and care needs of people with cerebral palsy bring medical complexity and frequent contact with health professionals. The GP has a unique opportunity to provide continuity for the person throughout their life course and can be an important support for the patient and their carers during illness and periods of transition. This article aims to highlight the important clinical aspects of cerebral palsy and the principles of management, with an emphasis on the role of the GP.

Clinical case scenario

Jason is a 22-year-old man with cerebral palsy, severe learning disabilities, and epilepsy. He comes to clinic with his mother. Jason is more agitated than usual during the annual health check. Mum looks tired and distressed. Mum reports experiencing a feeling of loneliness, strain and anxiety around Jason’s long-term care. She is concerned about his epilepsy, as he has been having more seizures. She worries that Jason is more lethargic since his neurologist started lamotrigine. Mum reports that despite an established jejunal feeding regimen, Jason is coughing more. Mum is worried about his communication, swallowing, seizures and medication. She appears exhausted and in need of being supported. You have known Jason for many years, and were the key to providing support to the family alongside his paediatrician in childhood, when he had chest infections, frequent seizures, orthopaedic surgeries and recurrent reflux. You consider how to support all the involved parties.

Definition

Cerebral palsy represents multiple disorders that permanently affect movement, posture and motor function and is caused by a non-progressive insult to the brain during development (Blair and Cans, 2018). These disorders are frequently associated with cognitive impairment, communication and behaviour problems, sensory and perception disorders, epilepsy and musculoskeletal problems (Blair and Cans, 2018).

History in medicine and society

The clinical features of cerebral palsy were first described by Hippocrates around the 5th-century B.C, when he linked prematurity, intrauterine distress and congenital infection, to infant brain damage (Panteliadis and Vassilyadi, 2018).

The first clinical descriptions are attributed to orthopaedic surgeon W. J. Little in the 19th-century, in work detailing effects of preterm birth and asphyxia, causing spastic rigidity in neonates and infants (Korzeniewski et al., 2018). The term ‘cerebral palsies’ was coined by William Osler in 1880 (Blair and Cans, 2018). Freud also wrote accounts detailing the complexity of the aetiology of cases of cerebral palsy in children (Korzeniewski et al., 2018).

General practice and cerebral palsy

To provide a good overview of cerebral palsy for GPs, a summary of the main health issues in children and adults is needed, alongside an overview of management. GPs sometimes make the initial referral with concern about the diagnosis and are often the first contact for health concerns. The aim of this article is to highlight specific problems and roles for GPs in caring for patients with cerebral palsy.

Epidemiology

The prevalence of cerebral palsy is 2 to 3.5 per 1000 live births in industrialised countries (Korzeniewski et al., 2018). The incidence and prevalence have increased in recent years, due to the developments in neonatal medicine, permitting the survival of increasingly premature infants (Korzeniewski et al., 2018).

The average practice list size in England has increased in the last decade, from 6914 in 2013, to 8757 in 2019 (Bostock, 2019). A substantial number of practices now have more than 15 000 patients (Bostock, 2019). This means the average UK practice will have up to 30 patients with cerebral palsy.

Aetiology

The causes of cerebral palsy are multiple and complex. Some of the contributing factors are summarised here.

Asphyxia

For many years birth asphyxia was presumed to be a major causative factor, related to the trauma of difficult vaginal deliveries, the use of instruments in delivery, particularly in premature and low birth weight infants (Korzeniewski et al., 2018). However, the contribution of asphyxia in isolation is overestimated and a landmark study of 50 000 children by the National Collaboration Perinatal Project of infants born 1959–66 (Korzeniewski et al., 2018), demonstrated that the risk of cerebral palsy in children with early life indicators of birth asphyxia was only 5% (Nelson and Ellenburg, 1986).

Prematurity

The risk of cerebral palsy is up to 50-times higher in pre-term infants (Korzeniewski et al., 2018). It is the interplay of issues associated with prematurity that causes cerebral palsy, including intrauterine growth restriction, hormonal imbalance, perinatal infection and exposure to environmental toxins, metabolic and thyroid disturbance, and downstream consequences of these processes, including oxidative stress, inflammation and subsequent neuronal damage (Korzeniewski et al., 2018).

Maternal infection

Maternal infection is an important cause of cerebral palsy, and there are links to maternal and intrauterine cytomegalovirus, toxoplasmosis, rubella, herpes simplex and recently, Zika virus in its causation (Korzeniewski et al., 2018).

Iatrogenicity

Iatrogenic factors, particularly following premature birth also contribute. The very premature infant will often, require additional support, including mechanical ventilation and artificial feeding. The effects of mechanical ventilation on the development of cerebral palsy are striking and research suggests that downstream effects of hyperventilation in the setting of respiratory support in pre-term infants, causes lung damage, neurological inflammation and changes in blood gas levels, causing brain damage (Korzeniewski et al., 2018).

Perinatal triggers

Another factor is perinatal stroke. This is hypothesised to be caused by several precipitants, including neonatal infection, congenital heart disease, placental infection, abruption, thrombosis and maternal pre-clampsia (Korzeniewski et al., 2018). Other post-natal issues including hypoglycaemia and kernicterus are also associated with cerebral palsy (Korzeniewski et al., 2018).

Social problems

Cerebral palsy is indirectly caused by social deprivation, maternal psychological instability, and substance misuse during pregnancy, all of which are related to pre-term labour, intrauterine growth problems and traumatic birth.

Clinical features

Cerebral palsy is a disorder of central nervous system function. Cerebral palsy has different presentations related to the site of the primary neurological insult. There are different types of cerebral palsy based on the way the motor problems affect the individual’s body (Himmelmann and Panteliadis, 2018). Cerebral palsy can be divided into three phenotypic subgroups: spastic, ataxic and dyskinetic.

Spastic cerebral palsy

Spastic cerebral palsy is the most common form, affecting up to 85% of people with cerebral palsy (Himmelmann and Panteliadis, 2018). This presents with upper motor neurone signs, including raised muscle tone, exaggerated Babinski reflexes and clonus (Himmelmann and Panteliadis, 2018). Affected individuals may experience contractures, rigidity, limb deformity and struggle with sluggish, clumsy movements (Himmelmann and Panteliadis, 2018).

Ataxic cerebral palsy

Ataxic cerebral palsy, accounts for 4% of cases and involves disturbance of fine motor movements, balance, posture and praxis (Himmelmann and Panteliadis, 2018). Patients have hypotonia, unsteady gait, intention tremor, and clumsy, forceful movements (Himmelmann and Panteliadis, 2018).

Dyskinetic cerebral palsy

In dyskinetic cerebral palsy, patients demonstrate chorea and writhing movements, associated with dystonia (Himmelmann and Panteliadis, 2018). The thalamus and basal ganglia are frequently affected. Dyskinetic cerebral palsy is associated with perinatal insults and hypoxia and is usually accompanied by multiple deficits in other neurological, visual and intellectual functions (Himmelmann and Panteliadis, 2018).

Limb involvement

Cerebral palsy can present unilaterally or bilaterally and may affect each limb differentially. Some people will be hemiplegic, others diplegic or quadriplegic (Munot and Varadkar, 2016).

Severity

The severity of cerebral palsy is based on the site and extent of the neurological insult and function of the affected area. Clinical severity varies with the intensity and efficacy of supportive therapies.

Although cerebral palsy can be mild, moderate, or severe, the associated severe morbidity should not be underestimated. In fact, 40% of those affected cannot walk unassisted, 50% have cognitive issues or learning disability, with 33% having epilepsy and the same proportion lacking verbal communication (Korzeniewski et al., 2018). Over half of people with cerebral palsy have additional medical issues (Himmelmann and Panteliadis, 2018). Motor problems trigger disability, including muscle tone defects, impaired strength and manual dexterity, poor balance and movement control (Himmelmann and Panteliadis, 2018). Affected people experience reduced bone density and contractures of denervated muscles. Bony deformations, including joint dislocations can complicate the clinical picture (Himmelmann and Panteliadis, 2018). These issues challenge the provision of therapies aimed to increase function and quality of life.

Classification

There are multiple models for classifying cerebral palsy. One of the most useful is the Gross Motor Function Classification System (GMFCS). This system is a five-level classification of movement disability in cerebral palsy across four age groups, in children aged 2–12 years. The GMFCS considers function and disability associated with the clinical motor phenotype (Panteliadis and Vassilyadi, 2018) and reviews functional movement domains including sitting, walking and wheelchair mobility (Park, 2020). People are classified into one of five groups. Group I has milder functional impairment and higher motor function and children in groups I and II usually walk independently (Reddihough, 2011). Those in group III tend to use walking aids, whereas groups IV and V have more severe motor disability, requiring wheelchair use, and sometimes head, neck and trunk support (Reddihough, 2011). This system is clinically useful, in communicating the severity of cerebral palsy, prognosis, expected quality of life, and treatment goals to clinicians, patients and caregivers (Himmelmann and Panteliadis, 2018). The GMFCS is widely used, particularly in community paediatrics, where the score is plotted alongside growth to give information on motor development prognosis to parents and helps plan treatment. A detailed break-down of the GMFCS is given in Fig. 1.

Figure 1.

The gross motor function classification system.

The GP and diagnosis

GPs commonly see parents with concerns about their child’s development. Clinic presentations include parental concern about foot alignment, toe walking and late initiation of walking. Parents may present worried their child is ‘clumsy,’ or raise concerns if a preference for using one side of the body is noticed at an early age (e.g. in the first 2 years of life where this is unusual). Also, concerns about speech, behaviour, development, hearing and vision may be raised by parents, health visitors or nursery teachers. Parents may come to discuss results of specific investigations done in secondary care. Additionally, the GP may be involved in the review of a patient after a seizure or intercurrent illness. A child with cerebral palsy may also present with failure to thrive.

Clinical assessment

In cases where cerebral palsy is suspected, the GP will look for clues in the history. The GP will review specific concerns about the child presented at the consultation and take a detailed history of the mother’s pregnancy, labour, including any complications, and details of the early postnatal period, including delivery, health of the baby at birth and any admissions to hospital in the first 2 years of life. A family history, to review for genetic diseases, learning disability and brain injury, is useful. Maternal substance use prior to and during pregnancy is helpful to elicit in the history. Other questions will be based on the aetiological risk factors, discussed earlier in this article. Birth weight review is useful, and the maternal red book is important, as cerebral palsy is linked with very low birth weight and failure to thrive (Reddihough, 2011). Assessment of infant weight and growth curves from the red book and any other records is important.

Specific examination signs make the possibility of cerebral palsy more likely. These include dysmorphic features such as microcephaly, as well as raised tone in the limbs and trunk, nystagmus, toe walking, scissoring gait, brisk tendon reflexes, Babinski sign and ataxia (Munot and Varadkar, 2016).

When a new diagnosis of cerebral palsy or any neurological, genetic, or dysmorphic condition is suspected, the most appropriate initial action is urgent onward referral to outpatient paediatrics for full assessment. The urgency of the referral is based on the potential for developmental delay and disability of the child and the benefits of early intervention.

Managing cerebral palsy

Managing cerebral palsy is a complex endeavour, requiring a multidisciplinary team (MDT). The GP may see the patient when they first present with undifferentiated signs of illness, including malaise, behaviour change, skill regression and somnolence. It is important for GPs to be aware of health issues faced by people with cerebral palsy, so that appropriate assessment, treatment and referral can be made. The transition to adult services can be a particularly difficult time for patients with cerebral palsy, their families and carers. In childhood community paediatricians usually coordinate care within the MDT, but in adulthood this may become the GP’s role. This aspect of care is not considered specifically in this article as it will vary according to the individual patient’s needs and local organisation of services. GPs have an important role in at least liaising between all parties and when possible facilitating the process of transition with comprehensive input from the MDT.

Complications of cerebral palsy

The main comorbidities associated with cerebral palsy requiring MDT input are reviewed below. A summary of the members of the MDT as they relate to clinical care in cerebral palsy is given in Fig. 2.

Figure 2.

The MDT in cerebral palsy.

Feeding, growth and gastrointestinal problems

Feeding issues and failure to thrive are common in cerebral palsy (Reddihough, 2011). These can be caused by impeded control of facial musculature, swallowing problems, postural instability, kyphosis, gastrointestinal hypo-motility and reflux (Reddihough, 2011). The child with cerebral palsy is likely to need the support of a paediatric dietician, to advise on calorie needs and how best to achieve these requirements with supplements, and sometimes nasogastric or gastrostomy feeding (Reddihough, 2011).

Speech and language therapist (SALT) support may be needed to review swallowing, support speech development and give advice on safe postures and consistencies for feeds, to minimise aspiration risk. Other gastrointestinal issues include constipation, causing early satiety, reduced appetite and triggering aspiration by exacerbating reflux. Over the longer term, reflux is a key factor in the development of chronic lung disease in patients with cerebral palsy (Reddihough, 2011).

Constipation can trigger long-term bowel motility issues leading to a propensity to develop volvulus in later life if untreated. The detection of constipation, and its early treatment with dietary fibre, hydration, laxatives, enemas, positional support, physiotherapy and manual evacuation, is vital.

The prevention of additional illnesses is important in children with cerebral palsy, who may be immunosuppressed, due to reduced weight, stunted growth and prematurity. Children with cerebral palsy are at risk of infection; due to postural issues causing pressure areas and breaks in the skin barrier (Reddihough, 2011).

It is vital that children with cerebral palsy complete their immunisation schedule (Reddihough, 2011). The GP and their nurse colleagues are essential in supporting this process. Also, skin care and the treatment of abrasions, infections and the dressing and monitoring of wounds require input from community teams, and the GP may be called to review areas of concern and to provide topical treatments, dressings and antibiotics (Reddihough, 2011).

Neurological disability

Frequently, the person with cerebral palsy will have associated neurological comorbidities. It is estimated that 52% of children with cerebral palsy have a learning disability. In addition, 45% have epilepsy, 28% suffer vision problems, 38% struggle with speech and 12% have a hearing deficit (Munot and Varadkar, 2016).

Learning disability is more prevalent in people with cerebral palsy. Higher rates of learning disability occur in children with bilateral motor disorders (Cummins et al., 2021). The range of learning disability is itself variable and depends on the extent and loci of the brain damage, as well as the intensity and range of therapeutic inputs available to the child. Supporting individuals with learning disability is a team endeavour, requiring parental support and encouragement, special education, life skills training, and management of comorbid conditions, including epilepsy and physical health to maximise the child’s active participation and progress in the learning environment. Support settings include school, respite, activity-based programmes, sensory stimulation, and communication support.

Visual and hearing deficits are common and are closely linked to the type and severity of cerebral palsy. These issues include myopia, visual field deficits, oculomotor palsy, gaze deviations, as well as difficulties with object recognition, visual attention and cognitive processing of images. Successful management requires regular specialised eye tests, with the input of a specialised optometrist or ophthalmologist, as well as appropriate early eye skills training and orthoptics input (Kozeis and Jain, 2018).

Hearing problems are common, including sensorineural deafness as well as conductive hearing loss related to ear wax, particularly in people with complex needs, whose carers may struggle to support with ear cleaning regimens. It is my experience that many cases of behaviour change, agitation, skill loss and pain in individuals with cerebral palsy, particularly those with complex needs, relate to the presence of hard, impacted ear wax, which can be easily remedied with the application of olive oil, otex and the concurrent use of otomize. The GP is likely to be the person referring the individual to Ear Nose and Throat clinic or Audiology when there is a perceived change in hearing and will be an important point of consistency for carers when there is concern about hearing, speech, language and behaviour. In effect this often means the role of the GP extends to the monitoring of speech and language issues and communication with SALT.

The prevalence of epilepsy in cerebral palsy is well documented. Between 15 and 55% of individuals with cerebral palsy and average intelligence have epilepsy and 71% with learning disability have epilepsy (Wallace, 2001). This reflects the higher incidence of epilepsy when cerebral palsy is associated with widespread cortical lesions and hypoxic ischaemic encephalopathy. The role of the GP in epilepsy is primarily related to the understanding of side effects of anti-epileptic drugs. The more common general practice consultation around epilepsy is either related to a change in seizure frequency and severity, or the appearance of changes in behaviour or additional symptoms, which may be attributable to medication. The GP is tasked with the initial assessment of this change, review of causes of increased seizure frequency, initial medication review and the implementation of initial investigations, alongside onward referral to the epileptologist. The GP has a role in health promotion in epilepsy, particularly highlighting personal safety in daily life, as well as discussing the risk of sudden death in epilepsy to patient and carer. A summary of epilepsy in cerebral palsy and important aspects of the GP role, is given in Fig. 3, with a summary of epilepsy drug properties given in Table 1.

Figure 3.

Epilepsy in cerebral palsy and the GPs role.

Table 1.

A summary of epilepsy drugs, their uses and side effects.

Anti-epileptic drug	Common use	Important side effects
Sodium valproate	Good general anti-epileptic used first line in partial and generalised seizures	Liver toxicity, abdominal pain, agitation, behaviour change, confusion, deafness, hypersalivation, gastrointestinal disturbance, headache, hallucinations, haemorrhage, drowsiness, alopecia, memory loss, hyponatraemia, thrombocytopenia, pleural effusion, renal failure, skin reaction, syndrome of inappropriate diuretic hormone, bone disorders, coma, encephalopathy.
Lamotrigine	Tonic, atonic, myoclonic and absence seizures Adjunct in Lennox Gaustat syndrome	Lethargy, anorexia, weight loss, aggression, arthralgia, agitation, dizziness, diarrhoea, fatigue, insomnia, mouth dryness, headache, irritability, pain, rash, alopecia, Disseminated intravascular coagulopathy, nystagmus, hepatic dysfunction
Levetiracetam	Myoclonic seizures, focal seizures with or without secondary generalisation	Anxiety, behavioural disturbance, cough, psychosis, dizziness, diarrhoea, movement disorders, vertigo, vomiting and other gastrointestinal disturbance, depression, immunosuppression, skin reaction, vertigo, alopecia, myalgia, hallucinations, suicidality
Phenytoin	Used in difficult to control cases, focal and tonic clonic seizures and in managing status epilepticus	Toxicity – levels need careful monitoring, agranulocytosis and other blood disorders, bone fracture, liver dysfunction, gingival hyperplasia, gastrointestinal disturbance, suicidality, electrolyte disturbance, headache, drowsiness, confusion, constipation
Carbamazapine	Focal seizures, generalised tonic clonic seizures	Dizziness, drowsiness, dry mouth, blood dyscrasias, hyponatraemia, vision disturbance, weight gain, heart failure, movement disorders, skin reaction

Source: Wallace, (2001) and BNF For Children, Online Edition.

Bladder and continence issues

Bladder over-activity, urinary incontinence, recurrent urinary tract infections (UTIs), and faecal incontinence are common in people with cerebral palsy (Turk and Fortuna, 2019) and may relate to the associated neurological injury and motor impairment. Bladder and continence issues can also be a consequence of associated learning disability, understanding of toileting, difficulty in getting to the toilet on time, or communicating the need for toileting. GPs may be called to support medical management of overactive bladder syndromes and incontinence with anticholinergic drugs. GPs will treat UTIs and be the first assessor when patients present non-specifically unwell from urosepsis. GPs may need to refer patients, for example, to continence services and district nurses.

Motor and musculoskeletal problems

The effect of cerebral palsy on motor function and limb integrity is marked. Gait problems in ambulant children are frequent and likely to benefit from combinations of physiotherapy support, orthotics and podiatry. Hand, arm and trunk instability may be present, making skilled and finer motor function difficult, causing dyspraxia. This often responds to occupational therapist support and daily living skills training.

Limb contractures are common in severe cerebral palsy, due to the loss of central muscular control, causing unopposed contraction of antagonist muscle groups. Uncontrolled muscle spasm is painful. The GP may be the first to discuss analgesia and muscle relaxant therapy and will refer to neurology for consideration of specialist neuro-physiotherapy, rehabilitation, or administration of botulinum toxin injections for dystonic muscles. Knee and ankle contractures are common, and surgical correction with prosthetic replacements, as well as the use of ankle and foot orthoses is common (Turk and Fortuna, 2019).

Wheelchair users with limited lower limb mobility, face the risk of hip subluxation and dislocation (Reddihough, 2011). This causes pain and complicates wheelchair use and transfer by hoist. The prevalence of hip pain in non-ambulatory patients with cerebral palsy is 47% (Krigger, 2006). Evidence suggests that pain recognition and management is poor, with only around 14% of patients receiving medication (Krigger, 2006). In addition, people with cerebral palsy have a much higher incidence of kyphosis and scoliosis than the general population (Turk and Fortuna, 2019). Again, management of pain usually requires input from GPs, as does the communication of orthopaedic problems to secondary care and referral for review by the orthopaedic team to plan surgical treatments. GPs are often asked by family members to discuss the results of imaging studies done in secondary care.

Individuals with low mobility are at a higher risk of osteopenia, osteoporosis and fragility fractures (Krigger, 2006). The incidence of reduced bone density is thought to be 50%, even in adolescents with cerebral palsy (Turk and Fortuna, 2019). The GP is needed to support bone protection regimens, including referral for periodic bone densitometry scans, the appropriate initiation of calcium and bisphosphonate regimens and in the regular review of prescribed medications.

Another issue linked to cerebral palsy is spinal stenosis and nerve entrapment syndromes, causing pain and incontinence, which further impairs mobilisation (Turk and Fortuna, 2019). The patient may present with pain-induced behaviour change, or may have worsening of baseline continence, motility reduction, or increased muscle spasms. GPs can maintain knowledge of these factors as potential diagnoses and where appropriate refer for radiological investigations, electrophysiology studies and surgery.

Complications into adulthood

Life expectancy

Life expectancy is lower for people with cerebral palsy (Turk and Fortuna, 2019). Younger death, particularly less than aged 60 years, is generally attributed to complications of more severe impairment, paralysis and reduced functioning (Turk and Fortuna, 2019). Higher rates of death in earlier life, in the third and fourth decade, are from complications, for example related to gastrostomy tubes, respiratory complaints such as aspiration pneumonia and complications of epilepsy, including sudden death in epilepsy (Turk and Fortuna, 2019). Deaths of people in their fifth and sixth decades are frequently related to circulatory problems and malignancy (Turk and Fortuna, 2019). On the other hand, people with mild cerebral palsy have a life expectancy approaching that of the general population.

Mental health

Mental health problems are common in cerebral palsy and are related to reduced community integration and participation, frustration around communication and self-expression, isolation and loneliness (Krigger, 2006), as well as challenges created by life transition periods like moving from school to day service, bereavement and retirement from day service. As with other causes of learning disability, there is a higher risk of anxiety, depression, cognitive dysfunction and dementia. GPs are likely to be the first clinicians contacted when there is a change in behaviour, sleep or activity levels. GPs can review patients and consider physiological and psychological causes of illness. GPs will be involved in initial investigations, including blood tests and urine testing. GPs may need to start initial therapy for psychiatric causes of illness, pending a clinical opinion from learning disability services in patients with IQ less than 65, or adult psychiatry when there is no learning disability.

Chronic disease and screening

Patients with cerebral palsy have a higher risk of death from respiratory illness, and a high incidence of coronary heart disease (Krigger, 2006). GPs provide lifestyle counselling for patients and their carers with a review of cardiovascular risk factors and the promotion of exercise. Sometimes, this means referral to a supported exercise programme for patients with disabilities.

There is evidence to suggest that people with cerebral palsy have a higher risk of cancer, including brain tumours and breast cancer (Krigger, 2006).They are less likely to attend for screening, including cervical smear, breast examination and bowel screening. Thus, an important GP role is to review screening in patients with cerebral palsy and proactively support the implementation of screening programmes. However, one must also keep in mind that although lack of screening in this population is a factor in higher cancer rates, there is also evidence that cerebral palsy may be associated with pro-inflammatory states that increase the risk of malignancy. These are thought to play a role in the higher incidence of breast cancer, which is equivalent to three times that of the general population (Turk and Fortuna, 2019).

Functional decline

There is a much greater incidence of early mobility decline with age in patients with cerebral palsy (Turk and Fortuna, 2019). This may relate to obesity in patients who have reduced mobility, but can be due to changes in the environment, reduced physiological and neurological reserve and the impact of the general somatic ageing process on already impaired neuronal motor pathways, as well as on the integrity of the musculoskeletal system. An awareness of this is important for GPs who may be involved in patient referral to occupational and physiotherapy. Also, reduced mobility may be a consequence of osteoarthritis, which is common in cerebral palsy, due to the chronically altered mechanics of joint movement, so much so that the need for hip and knee replacements is more common for people with cerebral palsy in mid and later life than in the general population (Turk and Fortuna, 2019).

Wider support

GPs are an essential source of support for carers, who may experience stress, burn-out and anxiety related to their care role. GPs need to have knowledge of available support services for people with cerebral palsy and their carers to help them navigate difficult periods. The GP may be the first person consulted by family when there are questions about long-term care planning, transitions into supported living and residential care and in questions around capacity assessment and advanced care planning. The GP is usually the provider of indirect measures of patient protection through vaccination, for example Influenza, pneumococcal and COVID-19 vaccination for patients and their carers. Table 2 shows a list of useful support services for people with cerebral palsy and their carers.

Table 2.

Useful support charities for people with cerebral palsy and their carers.

Organisation	Website/Contact	Description
Scope UK	www.scope.org.uk 0808 8003 333 helpline@scope.org.uk	A disability support charity that provides advice and support for people with disabilities. Services include online chat, helpline and shared online resources to help people with a wide range of disabilities navigate problems with family life, work and equality. They have specific branches of the charity to support family and life transition periods for people with disability
Mencap	www.mencap.org.uk 0808 808 1111 helpline@mencap.org.uk	A learning disability support charity which provides information on health, wellbeing, participation and links to local support and information for people with learning disabilities. This service covers a wealth of areas including health, benefits, social support, grief and bereavement support, inclusion and education about the the health conditions associated with learning disability, including cerebral palsy
Cerebral Palsy Cymru/ England/Scotland	www.cerebralpalsycymru.org 02920 522 600 info@bobathwales.org There are equivalent websites for England and Scotland	A cerebral palsy charity which supports access to early assessment and intervention for children and adults with cerebral palsy, particularly those with additional needs and their families. The charity offers not only assessment ut also access the therapy services. The website allows professional referral in some cases
Silver Lining brain injury charity	www.thesilverlining.org.uk 0203 174 2051 admin@thesilverlining.org.uk	A charity offering low-cost activities for people with brain injuries and their families. This charity encourages supported shared family activities and participation, aiming to support good family relations and shared fun time
Brainwave	www.brainwave.org.uk cerebral-palsy 01278 429 089 enquiries@brainwave.org.uk	A support service offering therapy through educational activities to encourage skills learning, improved mobility and communication to promote increased independence for people with cerebral palsy and other neurological conditions and learning disabilities. They also provide family support and have local branches throughout the UK

KEY POINTS

Cerebral palsy is a heterogeneous group of non-degenerative disorders that share motor, neurological and sometimes intellectual dysfunction causing variable physical and cognitive disabilities

Cerebral palsy affects multiple domains of function, development and health, through childhood into adult life

Cerebral palsy is relatively common with a rising incidence and prevalence; the average practice will have up to 30 affected patients

The health and care needs of people with cerebral palsy bring medical complexity and frequent contact with health professionals

The GP is often the one consistent clinician or service available to the person and their family and is an important part of the MDT, connecting the person to more specialised colleagues in secondary care and therapy services

The GP is a source of support, particularly for signposting resources to the patient and carer, as well as in reviewing medication and sudden changes in health and wellbeing

Footnotes

ORCID iD

Maria Vincent

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