88.

Refer urgently children who present with discrete episodes of loss of awareness (mid-activity vacant spells) or of attention and concentration difficulties in line with the NICE guideline on epilepsies.

89.

Be aware that medicines commonly used to treat epilepsy in children can adversely affect concentration and memory.

90.

Refer children with concentration and memory difficulties that interfere with learning, school progress or behaviour to community paediatric or paediatric neurodevelopmental services for assessment.

91.

Be aware that some children with attention and concentration difficulties do not have hyperactivity.

Recommendation 88 – Unrecognised epileptic absence seizures

Concentration and memory problems are common in children who have epilepsy, both undiagnosed and diagnosed. If concentration difficulties are significant and present similarly in different settings (for example, at home and at school), the child could be having unrecognised absence seizures. If only present in 1 setting, the child is more likely to be losing concentration for other reasons.

Absence seizures may be brief and subtle. If they occur as the children are taught or given instructions, the children will not be able to absorb and process the information. An additional clue to the onset of absence epilepsy may be that children who were previously performing as well as their peer group are is now falling behind in their learning. Seizures occurring during sleep may affect a child’s ability to recall what was learnt the previous day.

The committee agreed that if epilepsy is suspected, the child should be referred urgently for a neurological assessment.

Recommendation 89 – Medicines commonly used to treat epilepsy

Medicines used to prevent seizures in children may have a direct effect on concentration and memory by causing drowsiness. This is more common when higher doses are used and when children are on more than 1 drug for epilepsy. Measuring levels of some drugs in blood can be helpful in deciding if the dose needs to be adjusted. Carbamazepine slow/sustained release preparations may be preferable to standard formulations in limiting the drowsiness that usually occurs about an hour after taking a dose of carbamazepine. Parents and the child should be advised about potential adverse effects and who to contact if they are concerned.

Recommendation 90 – Concentration and memory difficulties interfering with learning, school progress or behaviour

Attention and concentration difficulties are a common presentation in children and could be the result of a broad range of conditions including learning difficulties, autism, attachment disorders, ADHD and hearing impairment.

The committee noted that in current practice there is over-referral of children with concentration and memory difficulties who are much more likely to have a social, behavioural, or neurodevelopmental cause than a neurological cause. However, children with concentration and memory difficulties whose learning development is also affected should receive an assessment. A child with a primary learning disorder may have secondary difficulties with concentration and memory. A child with a primary disorder of attention may learn poorly. To understand the primary problem, the child may require assessment by educational and clinical psychology and clinicians may need to exclude other contributing factors. If there is a significant problem with learning, school progress or behaviour, the child should be referred to paediatric neurodevelopmental services, which can then direct the child on the correct pathway.

Recommendation 91 – Attention and concentration difficulties

The common perception of the child with attention and concentration problems is that the child is hyperactive, noisy, and destructive in home and school settings. Such children readily come to the attention of primary care, school, and paediatric neurodevelopmental services. However, there are a group of children with significant attention and concentration problems who are inattentive but not hyperactive. Girls with attention problems are more likely to have this type than boys. They do not cause a disruption in class and are therefore not promptly identified and referred as children with hyperactivity. They may present eventually as children with learning difficulties, as they are not making expected progress in school.

The committee believes that there is currently an over-referral to neurology services of children with concentration and memory difficulties whose symptoms are much more likely to have a social, behavioural, or neurodevelopmental cause than a neurological cause. Therefore, the committee agreed that referral would only be a cost-effective use of resources in those whose learning development is affected. A child with a primary learning disorder may have secondary difficulties with concentration and memory.

The committee also noted that if children with relevant symptoms are not referred, then interference with learning development would be likely to prompt further unscheduled healthcare visits in the future, meaning that timely referral is likely to save the NHS money in the end.

The committee therefore expects these recommendations to be cost saving for the NHS.

The committee noted recommendations on referral in the NICE guideline on ADHD (CG72).

Targeted engagement exercise

Recommendations 90 and 91 scored high levels of agreement (94.4% and 83.3% respectively) which did not warrant any changes.

Recommendation 88 is the result of 2 recommendations that were combined subsequent to the targeted engagement exercise. Both original recommendations scored a high level of agreement (77.8% and 94.4%). However, there was some disagreement (5.6%, 1 participant) and further requests for revision regarding ‘absence seizures’. The respondents did not agree with the wording and the description of such presentations. The committee discussed the comments and decided that the 2 recommendations would be clearer if they were merged. They also provided further explanation about what was meant by ‘absence seizures’ and cross-referred to the NICE epilepsy guideline where further details could be found.

The level of agreement with recommendation 89 was 88.9%. There was 5.6% (1 participant) disagreement. There were requests for the committee to include an evaluation of the effectiveness of the medications and their side effects, which is outside the scope of this guideline; therefore, no changes were made to this recommendation.

92.

Refer urgently children with new-onset blackouts (transient loss of consciousness) accompanied by seizure markers for neurological assessment, in line with the recommendation for people with suspected epilepsy in the NICE guideline on transient loss of consciousness (‘blackouts’) in over 16s^b.

93.

Refer urgently children with mid-activity vacant spells or behavioural outbursts associated with altered consciousness or amnesia for the events to have a paediatric assessment.

94.

Refer urgently all children aged under 12 years with blackouts for paediatric assessment.

95.

Do not routinely refer children aged over 12 years with blackouts if there are clear features of vasovagal syncope, even if associated with brief jerking of the limbs. See recommendation 1.1.4.3 on uncomplicated faint in the NICE guideline on transient loss of consciousness (‘blackouts’) in over 16s.

96.

For children who have blackouts, seizures or amnesia for events after a head injury, follow the recommendations pre-hospital assessment, advice and referral to hospital in the NICE guideline on head injury.

Measures of diagnostic accuracy including sensitivity, specificity, positive predictive value, negative predictive value, ROC, AUC as well as adjusted odds ratios were all considered important outcomes to determine whether the signs and symptoms in the presence of paroxysmal events are indicative of a neurological condition that requires referral for a specialist assessment.

Sensitivity and specificity were considered to be of equal importance. Sensitivity was important because the consequences of missing a patient with a neurological condition would have serious implications that can lead to rapid deterioration of health or even death. Specificity was important because incorrectly diagnosing an individual may result in inappropriate administration of medications or treatments. Only adjusted odds ratios from studies that had conducted a multivariate analysis including the predictors of interest were considered.

Vasovagal syncope is a common presentation in teenagers, and younger children can have breath-holding attacks. These do not require specialised neurology input but are often inappropriately referred because of concerns that they represent seizures or other significant pathology. It was hoped that a literature search might produce evidence of features that would allow non-experts to distinguish these conditions with a degree of confidence.

Postural hypotension and breath-holding attacks may be inappropriately referred. Postural hypotension is a common presentation in teenagers. A key issue is identifying the clinical features of breath holding, reflex anoxic seizures and vasovagal syncope in children.

Breath-holding episodes and reflex anoxic seizures are common in children under the age of 5 years. Breath holding occurs when children cry vigorously and then hold their breath in expiration. The child turns blue around the mouth, loses consciousness and then will slump to the ground if standing. The child will then start to breathe and will usually recover within a minute.

Reflex anoxic seizures occur when a child has a sudden mild injury – often to the head – or a sudden fright. The child goes very pale, loses consciousness and then falls to the ground. The child may have some jerking movements of the limbs or face while unconscious. The child recovers within a few minutes. These episodes are triggered by excess activity of the vagus nerve triggered by the pain or fright. This causes marked slowing or cessation of heart activity.

Neither breath-holding episodes nor reflex anoxic seizures are epileptic events. There may be a family history of children with similar episodes. Iron deficiency anaemia may be a contributing factor.

Parents can be reassured that these events are not dangerous and the child will eventually grow out of them. They are involuntary episodes and the child cannot stop them happening. They are not a sign of a badly behaved child.

Recommendation 92 – New-onset transient loss of consciousness

Transient loss of consciousness in children may be caused by neurological disorders, predominantly epilepsy, by cardiac disorders or by simple syncope. Even with a clear first-hand description of the event, it is not always possible to make a confident diagnosis without specialist assessment and investigations. In the NICE guideline for TLOC in over-16s, the features of the blackout that are suggestive of epilepsy are:

• a bitten tongue
• head-turning to one side during TLOC
• No memory of abnormal behaviour that was witnessed before, during or after TLOC by someone else
• unusual posturing
• prolonged limb jerking (note that brief seizure-like activity can often occur during uncomplicated faints)
• confusion following the event, and
• prodromal déjà vu or jamais vu.

The guideline committee agreed that the recommendation for people with suspected epilepsy in the NICE guideline on transient loss of consciousness [‘blackouts’] in over 16s is applicable to children aged under 16.

Children who are having blackouts where epilepsy is suspected should be referred to paediatric services to be seen within 2 weeks.

Recommendation 93 – Mid-activity vacant spells or behavioural outbursts

Vacant spells – often called absences – as a result of epilepsy in children can be difficult to distinguish from the child day-dreaming and losing concentration. Epileptic vacant spells will occur in different situations, not just at school or at home. If there are fidgety movements or lip smacking with the vacant spell, this is more suggestive of epilepsy. If the vacant spell occurs in the middle of a sentence or while the child is bringing food to the mouth, it is also suggestive of epilepsy.

Behavioural episodes – such as aggression, sudden distress, or bizarre and inappropriate behaviour – can occasionally be a symptom of epilepsy. It can be difficult to come to a diagnosis, without neurological assessment, particularly if the child has other neuro-developmental problems.

Recommendation 94 – Blackouts

The committee agreed that all children under 12 with blackouts or transient loss of consciousness (TLOC) should be referred for urgent assessment as history and examination does not always allow a diagnosis to be made confidently, the episode causes parent, carers, and school staff great anxiety, and there are a number of potentially serious causes that need to be excluded.

Recommendation 95 – Vasovagal syncope

The committee recognised that vasovagal syncope is common in childhood, particularly during adolescent years. They considered that the existing NICE guidance on recognition of vasovagal syncope contained in the Transient Loss of Consciousness in over 16s guidance (CG109) was applicable to children aged 12 to 15 years.

Features suggestive of vasovagal syncope are:

• triggered by strong emotions, pain or dehydration
• occur on standing, relieved by sitting down, and
• pallor or sweating before an episode.

Recommendation 96 – Recent head injury

Transient loss of consciousness after a head injury in children is usually immediate or within a few minutes. As in adults, there may be a lucid interval before altered conscious level occurs. Much delayed paroxysmal events after head injury in children – days or weeks later – is rare but warrants urgent referral for neurological assessment.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for the considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that these recommendations would not lead to additional resource use, as they are in line with current practice, as outlined in other NICE guidelines.

The committee would like to highlight that appendix A of the NICE guideline Epilepsies: diagnosis and management CG137 provides a comprehensive and detailed discussion on differential diagnosis of epilepsy in adults and children. The committee felt that it may be too detailed for a primary care physician to use when trying to make a decision about referral, but it does provide very useful information on differentiating between different types of seizures.

The committee made these recommendations by consensus following an evidence review that did not yield any relevant clinical or economic evidence. Therefore, in line with NICE standard methods, these recommendations were only subject to the main stakeholder consultation and not to the additional targeted engagement exercise, which only applied to recommendations where no evidence review was undertaken.

97.

For children with unexplained acute confusion:

• arrange an emergency transfer to hospital and
• measure blood glucose.

98.

Be aware that acute confusion in children can be a symptom of meningitis, encephalitis or poisoning. If infection is suspected, follow the recommendations on identifying people with suspected sepsis and face-to-face assessment of people with suspected sepsis in the NICE guideline on sepsis.

99.

For children with acute confusion who have a non-blanching rash or other signs or symptoms suggestive of meningococcal septicaemia follow the recommendations on suspected meningococcal disease (meningitis with non-blanching rash or meningococcal septicaemia) in the NICE guideline on meningitis (bacterial) and meningococcal septicaemia in under 16s.

For other signs and symptoms of meningococcal septicaemia, see bacterial meningitis and meningococcal septicaemia in children and young people – symptoms, signs and initial assessment.

Recommendation 97 – Acute confusion

Confusion in a child may manifest as loss of normal skills, loss of speech, talking nonsense, or being less responsive. Acute confusion develops in the face of a few minutes to a few hours. It can be a symptom of a severe neurological illness such as meningitis, intracranial haemorrhage, raised intracranial pressure, and drug or alcohol poisoning. The committee decided that although there can be more benign causes such as high fever in a young child with a febrile illness, all children presenting with acute confusion should be transferred to hospital urgently, usually by ambulance. The committee recognised that in some instances, for example, in rural areas or where there is likely to be a delay in ambulance service, it may be quicker for a child to be transferred to the hospital in the carer’s car. However, it is important to weigh the benefits and harms of not waiting for an ambulance as in some cases this may delay treatment that could otherwise be started en route to the hospital.

Hypoglycaemia can present with acute confusion and therefore blood glucose should be measured as soon as possible to avoid delays in diagnosis and treatment for the child once in hospital care. This will also save time for paramedic services. An epileptic seizure can present with rapid onset confusion and this should be considered in the differential diagnosis if a clear history of epilepsy cannot be obtained from the child or accompanying adult.

Recommendation 98 – Presenting symptom of meningitis, encephalitis and poisoning

Acute confusion can, on its own, be an indication of an organic brain disorder such as meningitis or encephalitis. Poisoning may also be a cause. However, body temperature should distinguish poisoning from meningitis and encephalitis. The committee considered it important to inform non-specialists of differential diagnoses, as other obvious symptoms such as a non-blanching rash, may not always be present.

Recommendation 99 – Meningococcal septicaemia

Acute confusion may present with associated signs and symptoms that are suggestive of meningococcal septicaemia. The committee noted the NICE guideline on meningitis and meningococcal septicaemia (CG102) and agreed to cross-refer. The committee noted that a non-blanching rash on its own is not reason enough to suspect meningococcal septicaemia; other symptoms should be considered.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where a neurological outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee acknowledged that referral for acute confusion is considered both best practice and current practice. Therefore, there should be no change in cost impact to the NHS arising from these recommendations. Anything but immediate referral can lead to serious consequences that would have a significant impact on health outcomes and resource use through further unscheduled healthcare utilisation.

The committee believe that measurement of blood glucose is routine practice and therefore does not represent an additional cost to the health service. More importantly, the results can avoid delays in diagnosis and treatment, and thus better health, for the child once in hospital, meaning it represents a very cost-effective use of NHS resources.

Targeted engagement exercise

Twenty-four participants commented on this section. 66.7% agreed with recommendation 97 on transferring children with acute confusion to hospital immediately. The remaining suggested including more detail about other possible reasons for acute confusion in children such as alcohol intoxication. The participants also requested a definition for acute confusion especially in the context of children and infants. The committee did not feel that a precise definition was possible but have included some of the features that might be seen, added to the rationale rather than the recommendation.

There was more than 75% agreement with recommendations 98 and 99 and therefore only minor editing changes were made to these recommendations.

100.

Be aware that isolated dizziness in children is unlikely to be a symptom of a brain tumour if there are no accompanying symptoms or signs.

101.

Be aware that dizziness in children is often a symptom of migraine and may be the predominant feature.

102.

Be aware that in older children (usually aged over 8 years), dizziness related to change in posture is often caused by postural hypotension.

103.

In children with dizziness, examine the ears for any signs of infection, inflammation or eardrum perforation.

104.

For children with recurrent episodes of dizziness:

• consider referring for cardiological assessment if there are any factors that might suggest a cardiac cause, such as blackouts (transient loss of consciousness), a family history of cardiomyopathy or unexplained sudden death, or palpitations
• if there are episodes of dizziness with a fixed symptom pattern, be alert to the possibility of epilepsy as the cause and follow the recommendations in the NICE guideline on epilepsies.

Recommendation 100 – Dizziness and brain tumours

The committee considered that it is important to reassure clinicians that a brain tumour is a very unlikely to be caused by dizziness without any other symptoms; a tumour would usually present with accompanying symptoms such as headache, nausea and vomiting, ataxia, or drowsiness. Recommendations for referral of suspected cancer are available in the NICE guideline on suspected cancer (NG12).

Recommendation 101 – Possible migraine

Dizziness often presents in children as a symptom of migraine. The severity of dizziness can vary and can be profoundly disabling if it is very severe. The committee considered that clinicians should be aware that migraine might be a cause and should take a careful history to explore this possibility before deciding whether referral to paediatric neurology is appropriate. The committee noted that there will be some children who present with dizziness and migraine who will need to be referred to paediatric neurology; others may be managed in primary care. The committee agreed that clinical judgement should be used to determine the appropriate pathway and therefore could not make a more directive recommendation.

Recommendation 102—Postural hypotension in older children

Postural hypotension is common in children aged over 8, particularly in girls over 11 entering puberty. Postural hypotension is the most common identifiable cause of dizziness. Dizziness caused by postural hypotension does not need to be referred for neurological assessment. However, clinicians should be aware that postural hypotension may not necessarily be present at the time of examination and therefore cannot always be excluded as the cause of dizziness by checking blood pressure. The committee felt that clinicians should bear in mind the possibility of postural hypotension when assessing a patient. This will help to reduce the number of inappropriate referrals to paediatric neurology.

Recommendation 103– Examining ears with dizziness

Middle ear infection and middle ear effusion can be a cause of dizziness in children. The child may have fever, pain and diminished hearing, or a recent history of these. The eardrum may appear red and inflamed or bulging.

In children where the dizziness is caused by migraine or vestibular dysfunction, examination of the ears will be normal.

Recommendation 104—Recurrent dizziness

The committee identified recurrent dizziness in children as a red flag that warrants investigation once postural hypotension has been excluded. Anaemia and dehydration may contribute to postural hypotension. Other causes of dizziness include viruses and ear infections.

Cardiac dysrhythmias are a rare cause of dizziness and syncope in children; dizziness leading to syncope on exercise may be a helpful clue. Although rare, these are potentially serious and the committee thought that these should be considered as a potential cause in some children. The possibility of excluding cardiac disease by obtaining an ECG was discussed, but the normal ECG changes considerably during childhood, and expert interpretation is required. The committee therefore felt that if cardiac disease was considered a real possibility, on grounds of other clinical signs or symptoms, or because of family history, the child with recurrent dizziness should be referred for a cardiological assessment.

Epilepsy may also present with recurrent episodes of dizziness or vertigo, sometimes accompanied by other symptoms evolving in a fixed pattern. If epilepsy is suspected referral, assessment and investigation should be as described in sections 1.5 and 1.6 of the NICE guideline on epilepsies (Epilepsies: diagnosis and management – CG137).

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that the recommendations did not represent a change from current practice; therefore, the recommendations will not increase the number of referrals or NHS costs.

Targeted engagement exercise

Recommendation 100 and 101 (originally one recommendation) received 61.9 % agreement and remaining participants thought that it needed revision. In particular, participants thought that the definition of dizziness is not always clear and is often misinterpreted by both people and clinicians. Therefore, the committee has added a description to the LETR, although it is not possible to get over the fact that people will continue to use the word ‘dizziness’ to describe a range of sensations from true vertigo to mild general weakness.

81% of participants agreed with recommendation 101 and therefore only minor editorial changes to the wording were made.

Recommendation 104 had 66.7% agreement and revisions to the wording were suggested. The word ‘paroxysmal’ did not seem to be clear and therefore this was changed to ‘recurrent’. Further suggestions for clarifications were incorporated into the rationale.

It was also highlighted that vestibular causes of dizziness were common causes of dizziness that should also be investigated in this group but there was no mention of them in the recommendations. Therefore, the committee added a new recommendation (recommendation 103) to highlight this.

• For recommendations on headaches or migraine in children aged over 12 years, see the NICE guideline on headaches in over 12s.

105.

Refer immediately children aged under 12 years with headache for same-day assessment, according to local pathways, if they have any one of the following:

• headache that wakes them at night
• headache that is present on awakening in the morning
• headache that progressively worsens
• headache triggered or aggravated by coughing, sneezing or bending down
• headache with fever and features of meningism
• headache associated with vomiting
• headache associated with ataxia
• headache associated with change in conscious level or pervasive lethargy
• headache occurring within 5 days of a head injury
• headache associated with squint or failure of upward gaze (‘sunsetting’).

106.

Refer urgently all children aged under 4 years with headache for neurological assessment.

107.

Perform or request fundoscopy for all children with recurrent headache and refer urgently for neurological assessment if there are abnormalities.

108.

For all children with recurrent headache:

• be aware that hypertension might be the cause
• measure the child’s blood pressure and check the measurement against blood pressure reference ranges adjusted for age and height
• refer children if headaches are consistently worsened by upright posture and relieved by lying down.

109.

Do not routinely refer children with migraine unless it is affecting their school life, social life or family activities or they have one of the features listed in recommendation 104.

110.

Be aware that emotional stress is a strong trigger of migraine and chronic, daily headache in children. Ask the child and their parent or carer about specific learning problems, bullying at school and stress in the family.

111.

Ask about analgesic use in children with recurrent headache to ensure that medicine use is not excessive and to assess the likelihood of medication overuse headache. See the NICE guideline on headaches in over 12s for more information on medication overuse headache.

The NICE guideline on headache does not cover children under 12 years old, so there is a need for guidance regarding this population. Migraine is a common presentation but there are concerns about under-referral, delayed diagnosis, and non-recognition of refractory symptoms and worrying features of headaches. Chronic non-migraine headaches are difficult and time consuming to manage but are not referred inappropriately. There is a need for guidance for non-specialists on when to refer for example when symptoms can no longer be managed in primary care. Key issues include the following: what are the red flags for urgent referral? What are the clinical features of migraine in children under 12? What are features commonly seen with headaches that might indicate a brain tumour in children?

The committee agreed that an evidence review to support their decision-making would be helpful.

Measures of diagnostic accuracy including sensitivity, specificity, positive predictive value, negative predictive value, ROC, AUC as well as adjusted odds ratios were all considered important outcomes to determine whether the signs and symptoms in the presence of headaches are indicative of a neurological condition that requires referral for a specialist assessment.

Sensitivity and specificity were considered to be of equal importance. Sensitivity was important because the consequences of missing a patient with a neurological condition would have serious implications that can lead to rapid deterioration of health or even death. Specificity was important because incorrectly diagnosing an individual may result in inappropriate administration of medications or treatments. Only adjusted odds ratios from studies that had conducted a multivariate analysis including the predictors of interest were considered.

Recommendation 105 – Presence of red flag symptoms

The committee recognised the listed features as those that had a high chance of indicating serious intracranial pathology including brain tumours. The committee considered that the ‘red flag’ symptoms detailed in this recommendation indicate the requirement for urgent assessment, as they could indicate significant intracranial pathology requiring immediate medical or surgical management to minimise morbidity and mortality.

Recommendation 106 – Children under 4 years

The committee recognised that headache under the age of 4 years is an unusual symptom and, when present, has a high chance of being associated with a significant intracranial disease. As the child is unable to articulate clearly what is wrong, parents may report excessive crying, a high-pitched cry or excessive irritability.

Recommendation 107 – Fundoscopy

The committee considered the examination of the retinal fundus to be an essential part of the neurological examination in children with headache to look for blurred optic disc margin or papilloedema. As not all non-specialist clinicians have the skills required, the committee recommended that this should be requested, for example, from an ophthalmologist or optician.

Recommendation 108 – Hypertension and spontaneous intracranial hypotension

The committee recognised that high blood pressure could cause headache in children. As normal blood pressure changes with age and body height, it was recommended that the reading be interpreted by a comparison with standardised age- and height-corrected blood pressure charts. Raised blood pressure is also a sign found in raised intracranial pressure.

Hypertension in children is usually secondary to renal disease although there are more children recognised with primary hypertension related to obesity and salt intake.

Spontaneous intracranial hypotension is rare and characterised by headaches worsening in the upright posture and relieved when lying down. Referral is appropriate for diagnosis and treatment, which may involve a blood patch.

Recommendation 109 – Migraine

The committee accepted that migraine is common in children and does not necessarily require specialist referral as it can often be managed in primary care.

Recommendation 110 – Emotional stress

The committee considered it appropriate to recommend that enquiry about the presence of factors responsible for emotional stress was undertaken in children presenting with headache.

Recommendation 111 – Analgesic overuse and headache

The committee recognised that analgesic overuse in headache may be a problem in children as well as adults.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for the considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that due to the potentially severe nature of the symptoms, when presented in the forms described in the recommendations, these recommendations largely reflect current practice and will not lead to a significant increase in referrals to neurological services. Those recommended to be referred are at significant risk of serious harm to health, and so a rapid assessment is necessary to safeguard their future health, as well as to reduce the later costs that would occur if the symptom is not dealt with urgently. Such referrals will therefore be cost effective.

112.

Refer urgently to paediatric services children with dysmorphic features and developmental delay.

113.

For all children under 4 years with suspected abnormal head shape or size:

• take 3 consecutive measurements of the child’s head circumference at the same appointment, using a disposable paper tape measure
• plot the longest of the 3 measurements on a standardised growth chart, corrected for gestational age
• if the child’s head circumference is below the 2nd centile, refer for paediatric assessment.
  Offer follow-up measurements if needed, according to clinical judgement and taking the child’s age into account.

114.

For children with a head circumference measurement that differs by 2 or more centile lines from a previous measurement on a standardised growth chart (for example, an increase from the 25th to the 75th centile, or a decrease from the 50th to 9th centile):

• refer to paediatric services for assessment and cranial imaging to exclude progressive hydrocephalus or microcephaly or
• refer urgently to paediatric services if the child also has any of the following signs or symptoms of raised intracranial pressure:

  • tense fontanelle
  • sixth nerve palsy
  • failure of upward gaze (‘sunsetting’)
  • vomiting
  • unsteadiness (ataxia)
  • headache.

115.

For children with a head circumference above the 98th centile that has not changed by more than 2 centile lines from the previous measurement on a standardised growth chart, who are developing normally and who have no symptoms of raised intracranial pressure:

• note the head size of the biological parents, if possible, to check for familial macrocephaly
• if familial macrocephaly is likely, do not routinely refer the child in the absence of any other problem.

116.

For babies aged under 1 year whose head is flattened on one side (plagiocephaly):

• be aware that positional plagiocephaly (plagiocephaly caused by pressure outside the skull before or after birth) is the most common cause of asymmetric head shape
• measure the distance between the outer canthus of the baby’s eye and the tragus of their ear on each side
• if the measurements differ, confirm positional plagiocephaly and do not routinely refer if the baby is developing normally
• if the measurements are the same, suspect unilateral premature closure of lambdoid suture and refer to paediatric services.

117.

Advise parents or carers of babies with positional plagiocephaly that it is usually caused by the baby sleeping in one position and can be improved by changing the baby’s position when they are lying, encouraging the baby to sit up when awake, and giving the baby time on their tummy.

Measures of diagnostic accuracy including sensitivity, specificity, positive predictive value, negative predictive value, ROC, AUC as well as adjusted odds ratios were all considered important outcomes to determine whether the signs and symptoms in the presence of abnormal head shape or size are indicative of a neurological condition that requires referral for a specialist assessment.

Sensitivity and specificity were considered to be of equal importance. Sensitivity was important because the consequences of missing a patient with a neurological condition would have serious implications, which can lead to rapid deterioration of health or even death. Specificity was important because incorrectly diagnosing an individual may result in inappropriate administration of medications or treatments. Only adjusted odds ratios from studies that had conducted a multivariate analysis including the predictors of interest were considered.

Recommendation 112 – Suspected syndromic cranial synostosis

There are a number of rare syndromes that involve premature closure of cranial sutures in association with other dysmorphic features, including disorders of facial growth and limb deformities. The investigation and management of these disorders is highly specialised and complex. Urgent referral is recommended as early surgical intervention can improve outcome for head shape and brain growth.

Recommendation 113 – Measure head circumference

Up until age 4, most head circumference increase is due to growth of the brain. After age 4, increase in head circumference is mainly due to growth in thickness of the skull. After the age of 4 years, disorders of brain growth or raised intracranial pressure are unlikely to present with abnormalities of head shape or size.

The committee felt that it was important to flag the need for consistent practice for all health visitors and GPs regarding measuring the head circumference of children. Although it is current practice for health visitors to measure children’s heads on their routine visits, it is not current practice for GPs to do this. Not all children attend for their routine heath visitor assessments.

The committee also discussed that the technique for measuring children’s head size should become standardised for all GPs and health advisers. The committee agreed that a disposable, single use, paper tape measure should be used. This avoids problems with hygiene. In addition, a cloth tape measures can be stretched and give inaccurate measurements. It is important that the paper tape measure is not crumpled or torn prior to use. The committee recognised the potential errors in measuring head circumference in a young child who is wriggling and agreed that the longest of 3 measurements taken at that consultation should be plotted on the appropriate head circumference chart against corrected gestational age.

The tape measure should be placed above the ears, halfway between the hairline and the eyebrows and around the occiput. If the child has an asymmetric head shape, adjust the position of the tape to achieve the longest measurement.

Recommendation 114 – Exclusion of progressive hydrocephalus or microcephaly

A single head circumference measurement does not tell anything about rate of head growth. A head circumference measurement more than 2 standard deviations above or below the mean is considered abnormal. This is equivalent to above the 98th centile or below the second centile. However, a child’s head may go from the 25th centile to the 75th centile over a period of a few months. This is excessive head growth and should be assumed to be hydrocephalus or raised intracranial pressure until proven otherwise. Similarly, a head circumference that drops from 50th to second centile indicates poor growth of the head and brain and should be investigated.

These signs and symptoms in their own right are suggestive of raised intracranial pressure. When seen in parallel with excessive rate of head growth, they add to the likelihood of this being a pathological process that warrants urgent referral and investigation.

The anterior fontanelle normally becomes less tense when the child sits up and more tense when the child cries. If the anterior fontanelle is tense when the child is not distressed, this is more concerning.

Sunsetting refers to the appearance of the eye with failure of upward gaze. The lower part of the pupil is covered by the lower eyelid, and the white of the sclera is seen between the iris and the upper eyelid.

Young children who have recently started walking may stop walking and revert to crawling if they have ataxia.

Recommendation 115 – Possible familial macrocephaly

Head circumference is a reflection on growth and tall-for-age children tend to have larger heads for their age. Head size is also influenced by genetic factors. 2% of children have a head circumference above the 98th centile and the majority do not have hydrocephalus or a disorder of head growth.

The head circumference charts used in the NHS gives centile lines up to age 16. The 98th centile for 16-year-old boys is 58 cm and for 16-year-old girls is 56 cm. There is a small amount of further increase in head circumference into adult life in males but not in females.

The most common causes of poor post-natal growth in head circumference is poor brain growth due to disease processes affecting the brain in later antenatal or perinatal periods or early infancy such as damage to the brain in labour or meningitis in infancy. Poor nutritional status may affect head growth. There will always be clues to these disorders in history and examination. There are rare situations where the child has a primary disorder of skull growth and the cranial sutures fuse too early. This prevents expansion of the skull vault to accommodate a growing brain. The child will eventually present with symptoms and signs of raised intracranial pressure but have a small head. Only major surgery to the skull can permit brain growth.

Recommendation 116 – Differentiating positional plagiocephaly from unilateral premature lambdoid closure

Infants frequently have a preferred lying position when asleep and awake with their head to one side. If allowed to persist in adopting this position, this eventually leads to moulding of the shape of the skull with flattening of the side of the head in contact with the lying surface. Children who are slow to sit up because of prematurity, motor developmental delay, or parental choice are more at risk of positional plagiocephaly. Children with neurological disorders may have persistence of a primitive reflex – asymmetric tonic neck reflex – that maintains the preferred position.

Unilateral premature closure of the lambdoid suture is much less common than positional plagiocephaly. It is often present at birth unlike positional plagiocephaly, which develops over a period of weeks as the infant adopts a preferred lying position.

The committee discussed how measuring the distance between the tragus of the ear and the outer canthus of the eye is a useful adjunct to clinical inspection of the head shape of a child under one age and would help a clinician reassure parents that this was a benign condition. However, the committee acknowledged that this was not an absolute discriminator and that if there was uncertainty, referral for specialist assessment was appropriate.

Recommendation 117 – Positional plagiocephaly

Making a positive diagnosis of positional plagiocephaly allows the parents to be advised on how to change the child’s position to prevent further moulding. By identifying positional plagiocephaly early and allowing parents to reposition their child frequently, the degree of moulding will be limited. This removes the need for parents to seek expensive orthotic assessment (including radiation) and treatment for what is a benign and preventable condition.

The aim of the advice is to give the infant more time when they are not lying in their preferred position. Parents are advised to put children to sleep on their back rather than prone to reduce the risk of SIDS. Allowing the child to lie prone when awake and playing encourages head and trunk control and relieves pressure on the back of the head. Infants who do not yet have independent sitting balance can be encouraged to sit with appropriate support or in an appropriate chair.

Once the flat area at the back of the head is relieved of pressure with changing position, and the child is spending more time sitting, natural growth of the head will reduce the flattening. The committee does not recommend referral for investigations or management for a condition that has an excellent prognosis over time. The committee recommends referral for assessment of developmental disorders if there is concern that delay in meeting early motor milestones – rolling, sitting – is contributing to degree or maintenance of plagiocephaly. The referral would be for diagnostic assessment as well as assessing the need for therapy and provision of equipment such as adapted seating.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for the considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that these recommendations represent current practice and therefore would not lead to an increase in referrals or costs to the NHS. The committee noted that these recommendations will lead to an increase in head measuring in primary care. However, this would be done quickly during the course of a routine appointment and so would not take extra time. Paper tape measures are of very low cost. By comparison, head abnormalities can have very large impacts on the health of a child, but if identified they early can be successfully treated. Thus, the advantage of early identification will outweigh any additional cost, making this recommendation cost effective or possibly cost saving.

The committee was aware that abnormal shape of the skull is important for parents and children as children grow and develop body image. Prevention of skull deformity is important even in the absence of associated neurological or developmental problems.

The committee made these recommendations by consensus following an evidence review that did not yield any relevant clinical or economic evidence. Therefore, in line with NICE standard methods, these recommendations were only subject to the main stakeholder consultation and not to the additional targeted engagement exercise, which only applied to recommendations where no evidence review was undertaken.

118.

For babies aged under 1 year with acute-onset hypotonia (floppiness), examine the baby for signs of cardiac failure, enlargement of the liver or kidneys, pyrexia or an altered level of consciousness, and refer immediately to paediatric services.

119.

For babies under 1 year with hypotonia (floppiness) that has been present for weeks or months:

• if the baby is weak (for example, feeding and breathing difficulties), refer urgently to paediatric services or
• the baby is not weak and has no signs of intercurrent illness, consider referring in line with looking for signs of cerebral palsy in the NICE guideline on cerebral palsy under 25s.

Recommendations 118 and 119 – Hypotonia

Hypotonia in children may be idiopathic, or it may present as a sign of a significant organ disorder, including disorder of the brain or peripheral nervous system. If a diagnosis of a significant organ disorder or condition associated with hypotonia has already been made (for example, Down’s syndrome or Alagille syndrome), this is likely to be the cause. The child does not need to be referred to paediatric neurology for diagnosis. Referral to other services should be determined depending on the underlying condition.

The committee felt it was important to highlight potential causes of hypotonia so that those children with a possible serious disorder of cardiac, renal or liver function would be referred immediately to paediatric services.

If an obvious cause cannot be identified, a referral to paediatric neurology is appropriate in order to exclude neurological causes. However, the committee considered that referral to paediatric services may be appropriate since local service provisions vary. If possible, arrange a referral directly to paediatric neurology.

A child who is hypotonic may also be weak. In the older child who has already developed some motor skills, loss of these voluntary motor skills usually suggests the child is weak. In the infant who has not yet developed the ability to sit, roll over, or reach for objects, it is not always easy to decide if the child is weak and hypotonic, or only hypotonic. Weakness tends to affect the face and the limbs in young infants. In severe weakness, feeding and breathing may be affected. The child has a paucity of movement even when stimulated. The floppy child is usually able to generate some anti-gravity movement and movement against resistance when stimulated. Children who exhibit floppiness with weakness are much more likely to have an underlying progressive disorder of the nervous system. In this circumstance, an urgent referral is required to avoid a delayed diagnosis.

An infant or child who is floppy but not weak will have good movements against gravity and resistance when stimulated or trying to perform a task. Their posture may be poor for age. The child who is weak and floppy is likely to have a paucity of spontaneous movements and limited power of movements when stimulated.

Children with hypotonia and an altered level of consciousness are likely to have a disorder that requires immediate investigation and management; these children may need intensive care. They may deteriorate very quickly and ambulance services should be alerted to the need for support in transferring the child to hospital.

The majority of infants who are hypotonic (floppy) in the first few weeks and months of life do not have an underlying neurological disorder or acute illness. There may be a family history of hypotonic infants. In the absence of any other signs or symptoms of neurological disorder or acute illness, decision on referral may be delayed until the child is 6 months old to see if the child is making progress with motor development.

As there may be significant waiting time to be seen by paediatric services, an early simultaneous referral to community physiotherapy could be considered to improve strength, postural control and function.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that the recommendations did not represent a change from current practice; therefore, the recommendations should not increase the number of referrals or change NHS costs.

Targeted engagement exercise

The first recommendation received 81% agreement during the targeted engagement exercise and the second received 61.9% with minor suggestions for rewording and clarifications around the urgency of referral.

120.

Refer immediately children with sudden-onset or rapidly progressive (hours to days) limb or facial weakness for neurological assessment.

121.

Refer urgently children with progressive limb weakness for neurological assessment.

122.

Refer children with limb weakness that is part of a developmental disorder to paediatric services, in line with looking for signs of cerebral palsy in the NICE guideline on cerebral palsy under 25s.

123.

For boys with limb weakness, see recommendations 125 and 127 on motor development delay and motor development regression in boys.

Recommendation 120– Sudden or rapidly progressive onset of facial or limb weakness

Sudden or rapidly progressive limb or facial weakness in a child is usually a symptom of a pathology that requires immediate neurological investigation or management. Strokes and space-occupying lesions (brain tumours or intracranial abscesses) can present with monoplegia or hemiplegia. Acute disseminated demyelination (ADEM) may present initially with weakness before the onset of altered conscious level. Children with these conditions may deteriorate rapidly.

Onset of weakness in the legs may be a sign of Guillain–Barré syndrome or transverse myelitis (TM). It is not always possible to differentiate these conditions on clinical examination. As the weakness can progress to affect breathing and swallowing, children should be referred immediately (on the same day).

Other pathologies of the spine and spinal cord are rare in children – for example, prolapsed discs, epidural abscess, spinal cord tumours. They may present acutely with weakness and pain, sensory disturbance as well as bladder and bowel dysfunction and should be referred immediately.

There are less sinister causes of sudden-onset of limb weakness in children-pressure palsies affecting the common peroneal nerve, brachial plexopathy from heavy rucksacks and Todd’s paresis from prolonged seizure. The history obtained may give a clue as to the cause but referral within 24 hours would be advisable if there is any doubt about the aetiology or no sign of spontaneous improvement.

The onset of facial weakness may be due to Bell’s palsy. The majority of children who have Bell’s palsy will make a full recovery within 12 months of being diagnosed. Although this is an essentially benign condition, the committee still felt that a child with facial weakness should be referred for an urgent paediatric opinion

Recommendation 121 – Motor delay or progressive weakness

Children with neuromuscular conditions may present at birth with low muscle tone, weakness, and feeding or respiratory difficulties. Less severely affected children may not present until it is apparent that the child is not making expected progress with motor skills. All children should be referred for neurological assessment and investigations. The severity and rate of progression of symptoms will determine the urgency of the referral.

Most neuromuscular conditions presenting in infancy or early childhood are genetic in origin. As well as early diagnosis allowing the child and family access to assessment, support and information, it also allows genetic counselling and possibly antenatal diagnosis in a subsequent family pregnancy.

Duchenne muscular dystrophy (DMD) is one of the most common and severe forms of muscular dystrophy and primarily affects boys. Motor developmental or global developmental delay may be a sign of DMD.

Paediatric neurologists and muscle specialists are now using steroid therapy to slow down the rate of loss of mobility in boys with DMD. They aim to start treatment before the boys start to deteriorate, hence the desire to avoid delay in diagnosis. Depending on the age and type of developmental delay that is displayed, the child in question may also need support from allied health professionals, for example, physiotherapy, speech and language therapist, or occupational therapist. A referral to allied health professionals based on specific developmental needs should also be considered by the referrer.

Recommendation 122 – Cerebral palsy

Cerebral palsy is the most common chronic motor disorder to affect children, and it has the potential to affect children and their families’ quality of life significantly. The child may require investigation, support and therapy from health services, education, and social services. Early referral and confirmation of diagnosis allows the network of care to meet the changing needs of the child and family as the child grows and develops.

Cerebral palsy occurs in children who have none of the commonly recognised risk factors such as prematurity, twin or triplet, or poor condition at birth. Many children with cerebral palsy have comorbidities such as epilepsy, visual impairment and feeding difficulties, which may require early investigation and management.

Other genetic and metabolic disorders present similarly to cerebral palsy. Investigations to confirm or exclude these conditions should be undertaken in a specialist setting.

Recommendation 123 – Boys with limb weakness

See rationale in motor developmental delay section (7.9.1.1).

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. These estimates were the committee’s starting point for considering whether its recommendations caused additional referrals that would significantly affect the cost impact on the NHS.

The committee did not believe that the recommendations for face and limb weakness would change the number of referrals and hence would not increase costs to the health service.

Targeted engagement exercise

The level of agreement for these sorts of recommendations ranged from 73.7% to 94.7%. The committee considered the suggestions for clarification and amended the wording and LETR accordingly.

129.

Refer immediately children with abnormal neck posture and a recent head or neck trauma to an emergency department for assessment, and follow recommendations 1.2.9 and 1.2.10 on cervical immobilisation in the NICE guideline on head injury and recommendation 1.1.4 on spinal immobilisation in the NICE guideline on spinal injury.

130.

In children with abnormal neck posture, check whether painful cervical lymphadenopathy is the cause.

131.

Refer children who develop abnormal limb posture that has no musculoskeletal cause for neurological assessment.

132.

Be aware that abnormal head tilt in children can be a symptom of posterior fossa tumour.

Recommendation 129– Recent history of head or neck trauma

This may indicate instability of cervical spine through bony or ligamentous injury. The child should be referred immediately to a centre with imaging and paediatric neurosurgical services. Ensure that a potentially unstable neck is protected for the journey. Excess movement of the unstable cervical spine can cause irreversible and severe damage to the spinal cord with ensuing paralysis. Therefore, if there is uncertainty about how to stabilise the neck for transfer to hospital, the child should not be moved until emergency services are in attendance.

Recommendation 130- Painful cervical lymphadenopathy

This is a relatively common presentation in primary care and acute paediatrics services. The child adopts a favoured head position to reduce the discomfort from the enlarged lymph nodes. Children with severe throat infections such as epiglottitis and retropharyngeal abscess may also present with head tilt. These conditions usually have more obvious localised symptoms as well as lymphadenopathy. Management of the primary condition is necessary.

Recommendation 131 – Onset of abnormal limb posture

Children may adopt an abnormal posture of the head, neck, trunk or limbs because of pain or injury to the affected part. This is the most common cause. Refer to paediatric specialist for assessment. Less common causes of abnormal posture include abnormalities of tone, such as dystonia, or weakness. These may be transient and intermittent.

Children with an onset of abnormal posture but without a history of an associated acute event or an obvious musculoskeletal cause should be referred within 2 weeks for paediatric neurological assessment. There are benign causes of abnormal posture; however, it is a priority to exclude progressive causes requiring treatment.

Children with primary dystonia may be incorrectly diagnosed with a functional movement disorder. Primary dystonia in children is rare. The child may initially present with focal dystonia, which is intermittent. It may be triggered by stress or exercise.

Secondary dystonia is more common than primary dystonia in children. The most common secondary dystonia presents in children with cerebral palsy. In secondary dystonia, there is usually a history of neurological and developmental problems.

Recommendation 132 – Abnormal head tilt

Abnormal head tilt may present before other typical symptoms of posterior fossa tumours, such as ataxia, vomiting and headaches. This finding is sometimes dismissed leading to delay in diagnosis, and the committee therefore considered it useful to draw attention to the possibility. This should prompt further examination of the child - a detailed neurological examination will usually be abnormal.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and how much this cost the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for consideration of whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

All recommended referrals are in line with current practice; therefore, the number of referrals is not expected to increase, and there will be no change in costs to the NHS.

Targeted engagement exercise

Recommendations 130 and 132 received a high level of agreement (82.6 % and 100 % respectively); thus, the committee did not discuss or change them. However, comments provided by the participants were taken into consideration to elaborate on the rationales for these recommendations.

Of the 23 participants who commented on these recommendations, Only 1 participant disagreed with recommendation 129 although the reason for disagreement was not clear from the comment. 65.2% agreed with this recommendation. Comments were on the need to stabilise the neck in a chid being transferred with suspected instability of the spine following a recent head or neck trauma. This has been added to the LETR.

56.3% agreed with recommendation 131, abnormal posture of the limb, and the remaining thought it needed revisions. The committee considered the comments provided and added further justifications to the LETRs accordingly.

133.

Refer urgently children who have tingling accompanied by other peripheral nervous system symptoms such as weakness, bladder dysfunction or bowel dysfunction for neurological assessment.

134.

Be aware that tingling in children may be the first symptom of an acute polyneuropathy (Guillain−Barré syndrome) or other neuro-inflammatory conditions. If the child has features suggesting motor impairment, refer urgently for neurological assessment.

135.

Refer children with isolated tingling, altered sensation or paraesthesia for neurological assessment if the symptoms are episodic and are not associated with compression of a nerve. For more information see the recommendations on diagnosis and investigations in the NICE guideline on epilepsies.

136.

Do not routinely refer children for neurological assessment of temporary tingling or numbness if there is a clear history of the symptom being triggered by activities known to cause nerve compression, such as carrying a heavy backpack or sitting with crossed legs.

137.

Be aware that in children hyperventilation is a common cause of transient tingling in the limbs.

Measures of diagnostic accuracy including sensitivity, specificity, positive predictive value, negative predictive value, ROC, AUC as well as adjusted odds ratios were all considered important outcomes to determine whether the signs and symptoms in the presence of sensory symptoms are indicative of a neurological condition that requires referral for a specialist assessment.

Sensitivity and specificity were considered to be of equal importance. Sensitivity was important because the consequences of missing a patient with a neurological condition would have serious implications, which can lead to rapid deterioration of health or even death. Specificity was important because incorrectly diagnosing an individual may result in inappropriate administration of medications or treatments. Only adjusted odds ratios from studies that had conducted a multivariate analysis including the predictors of interest were considered.

Recommendation 133 – Tingling and other peripheral nervous system symptoms

These symptoms and signs may indicate pathology affecting the spinal cord. This can be acquired lesions such as tumour or haematoma, or a congenital lesion, such as tethered spinal cord. It is not easy to make the diagnosis on clinical examination and all children should be referred urgently to a centre where imaging of the spinal cord can be done.

Recommendation 134 – Guillain–Barré syndrome

Guillain−Barré syndrome is a relatively rare polyneuropathy that is usually self-limiting but can have serious consequences before it remits, chiefly by affecting respiratory function. Although this danger relates to motor function, the first complaint may be of tingling in the extremities. If this symptom is progressive the presence of motor signs or symptoms should be sought. If Guillain−Barré syndrome is suspected, the child should be referred urgently.

Recommendation 135 – Transient altered sensation

When not associated with nerve compression, transient positive or negative sensory symptoms may be related to epilepsy and require neurological assessment. If epilepsy is suspected, refer urgently in line with NICE guideline on Epilepsies: diagnosis and management – CG137 (sections 1.5 and 1.6)

Recommendation 136 – Transient compression neuropathies

These are common in children related to posture or carrying heavy objects and do not require referral for neurological assessment.

Recommendation 137 – Hyperventilation

Transient tingling in the limbs may be caused by over-breathing, which may be an emotional reaction. This symptom does not need neurological assessment.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that these recommendations would not lead to additional resource use, as they largely reflect current practice. Reassurance that some children do not need referral for neurological assessment may lead to a slight decrease in unnecessary referrals, leading to a cost saving.

138.

Refer urgently children with neuromuscular disorders who have early morning headaches or new-onset sleep disturbance for a respiratory assessment.

139.

Refer urgently children who have symptoms suggestive of new-onset epileptic seizures in sleep for neurological assessment.

140.

Refer children with symptoms suggestive of narcolepsy, with or without cataplexy, for neurological assessment or a sleep clinic assessment according to local pathways.

141.

Refer children with symptoms of sleep apnoea to ear, nose and throat or paediatric respiratory services, as appropriate, and offer advice on weight loss if the child is obese.

142.

Refer children aged over 5 years with new-onset night terrors and children with night terrors that persist after age 12.

143.

Reassure parents or carers of children aged under 5 years who have night terrors, repetitive movements, sleep talking or sleep walking that these are common in healthy children and rarely indicate a neurological condition.

144.

Offer advice on sleep hygiene to parents or carers of children with insomnia, and consider referring to a health visitor if the child is aged under 5 years.

145.

Consider referring children with sleep disorders associated with neurodevelopmental disorders or learning disabilities to community paediatric services.

146.

Be aware that sleep disorders in children may be a symptom of gastro-oesophageal reflux or constipation. See the recommendations on diagnosing and investigating gastro-oesophageal reflux disease in the NICE guideline on gastro-oesophageal reflux disease in children and young people, and the NICE guideline on constipation in children and young people.

Recommendation 138 – Early-morning headaches

Children with neuromuscular disorders, particularly boys with Duchenne muscular dystrophy, may present with headaches on awakening. This can be an early sign of respiratory failure due to hypoventilation during sleep. For boys with DMD, this may occur later in the first decade or into the second decade of life. The headaches may affect quality of life due to daytime drowsiness. The child should be referred urgently to paediatric respiratory services for assessment, including sleep study and consideration of non-invasive ventilation at night.

Children who present with headaches that wake them from sleep may be developing raised intracranial pressure. One of the common causes of raised intracranial pressure in children is a brain tumour. This possibility is covered separately within this guideline (see recommendation 104).

Recommendation 139 – Nocturnal epilepsy

Episodes of abnormal behaviour from sleep are common in childhood and include night terrors, nocturnal seizures and sleep apnoea with arousal. Parents will often video the episode and this can be very helpful in identifying the cause. Night terrors occur in children mainly under the age of 5. The child wakes up an hour or so after going to sleep, distressed and inconsolable. The episode may last up to 20 minutes, and then the child rolls over and goes back to sleep again.

Red flags for nocturnal seizures are:

• a stereotyped pattern of behaviour during the episode
• starting as a focal seizure and then becoming generalised
• difficulty rousing the child following the event.

The committee recognised that like adults, children with epilepsy are of significantly increased risk of death compared to the general population. Nocturnal seizures are a known risk factor for Sudden Unexpected Death in Epilepsy (SUDEP). Early referral for investigation is warranted.

Recommendation 140 – Narcolepsy with or without cataplexy

Narcolepsy is a condition that is easily missed in children. It can present as daytime drowsiness, falling asleep in unusual circumstances or as poor school performance and poor concentration. Diagnosis, assessment, and management are best achieved by a service with experience of this condition, and the child should be referred to neurological services.

Recommendation 141 – Sleep apnoea

Sleep apnoea is not uncommon in infants and young children and may be due to gastro-oesophageal reflux or intercurrent infection. Sleep apnoea is more common in children who have been born prematurely and have not yet developed a mature control of breathing.

In older children, recurrent sleep apnoea may be due to narrow upper airways due to enlarged tonsils and adenoids. Children suspected of this should be referred to ENT.

The committee also wished to highlight that children who have neuromuscular disorders, such as Duchenne muscular dystrophy, are more susceptible to hypotonia. Hypotonia in the muscles of the airways can cause sleep apnoea and other breathing disorders

Sleep apnoea secondary to obesity does occur in children. The child should be referred to paediatric services for dietary advice and consideration of sleep study.

Sleep apnoea in children causes parents a lot of anxiety. Children who have had a significant apnoeic event in sleep should be referred to paediatric services for investigation of possible causes and advice to parents on avoiding risk factors.

Recommendation 142 – New-onset night terrors

Epileptic seizures can occasionally be difficult to distinguish from night terrors, and both night terrors and epilepsy can occur many times in a night. Since night terrors are uncommon in children over the age of 5, children in whom night terrors commence after the age of 5 and those in whom night terrors of onset below the age of 5 persist after the 12^th birthday are at high risk of misdiagnosis of epilepsy. In such circumstances, referral for diagnostic review is appropriate as epilepsy carries with it a risk of adverse outcome.

Recommendation 143 – Sleep disturbances

The committee recognised that clinicians would already be aware that sleep disturbance is common in childhood. However, reassuring parents that it is a normal part of development may help to reduce the pressure for an unnecessary referral. Sleep disturbances such as night terrors, sleep walking, or repetitive movements do not require a referral to neurology. In many cases, sleep disturbances will resolve as a child gets older.

Recommendation 144 – Sleep disturbances in under 5s

The committee also wanted to highlight advice and support (for example, from health visitors) that is available outside of hospital settings as this may also lead to a reduced burden on secondary care. Sleep disturbances are often caused by not achieving effective bedtime routines. Once an appropriate sleeping pattern is identified, sleep disturbances will often resolve unaided.

The health visitor can provide very useful parenting advice from their experience with other families and knowledge of this child since early infancy. The health visitor is also able to do home visits and advise the parents on environment and sleeping arrangements in the house.

Recommendation 145 – Neurodevelopmental disorders or learning disabilities

Children with neurodevelopmental disorders often have poor sleeping patterns, have sleep disorders and experience sleep disturbances. This group is often referred to paediatric services for sleep-related issues. The committee felt that this group should be considered separately, as a referral to paediatric services may or may not be appropriate given the prevalence of sleep issues in this population. Clinical judgement should be used to assess individual cases.

Children with significant visual impairment are at higher risk of sleep disturbance than children with normal sight.

Sleep disturbances are also more likely to occur in children with intellectual disabilities or autism. Many children will be referred anyway, but in some cases, referral will be because of a suspected intellectual disability or autistic spectrum disorder rather than a sleep disorder. The committee considered that the appropriate pathway should be to community paediatric services, as within this team there is the expertise to assess the child and advise parents.

Recommendation 146 – Gastro-oesophageal reflux or constipation

Gastro-oesophageal reflux and constipation in children are associated with neurodevelopmental rather than neurological causes and commonly present with sleep disorders. The committee considered it important to highlight these conditions to non-specialists as potential causes. Taking a history should identify these causes.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where an outpatient visit costs £175 and a paediatric outpatient visit costs £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considerations concerning its recommendations causing additional referrals that would have a significant cost impact on the NHS.

The committee agreed that these recommendations do not represent a change from current best practice, and that, viewed along with the rest of this guideline, the recommendations should not increase the total number of referrals or NHS costs.

The committee noted the wider impact that lack of sleep can have on families, even leading to a family breakdown.

Targeted engagement exercise

This set of recommendations reached a very high level of agreement ranging from 77.8% to 100%. Therefore, the recommendations remained mostly unchanged except for minor refinement of the wording to make them clearer.

147.

Refer urgently children with new-onset slurred or disrupted speech that is not attributable to prescribed medicines, recreational drugs or alcohol for neurological assessment.

148.

Consider referring children aged over 2 years with abnormal speech development to speech and language services.

149.

Be aware that delay or regression in speech and language in children can be a symptom of autism. Follow the recommendations on recognising children and young people with possible autism and referring children and young people to the autism team in the NICE guideline on recognition, referral and diagnosis of autism spectrum disorder in under 19s.

Recommendation 147 – New-onset slurred or disrupted speech

New-onset slurred or disrupted speech, whether as an isolated problem or accompanied by loss of other developmental skills, can indicate the presence of an acute or progressive neurological disorder or epilepsy, which requires urgent neurological assessment.

Stuttering and stammering in children is unlikely to be a symptom of an underlying progressive neurological disorder. It is a form of dysfluent speech. It occurs commonly in children during a period of rapid speech development. Referral to child development services or speech therapy would only be warranted if it were having a significant impact on child’s ability to communicate.

Recommendation 148 – Abnormalities of speech development

Abnormal speech development is a very common presentation in children. Children who experience abnormal speech development (such as delayed speech or stuttering) may require support from speech and language services. In some localities, a referral to speech and language therapy must be accessed through community paediatric services. The committee discussed the appropriate age for referral and noted that there is a wide range within which development can be considered normal. It was therefore agreed that referrals should not be made before the age of 2. Until that age, development may be within normal limits, and speech difficulties may resolve unaided. Referral between 2 and 3 years is ideal so that treatment can be undertaken before the child starts school.

The committee noted guidance from the College of Speech and Language Therapists that suggests work with families is undertaken before the age of 3, with 1-to-1 support through speech and language therapists undertaken as a second-line option.

Recommendation 149 – Delay or regression in speech and language and suspected autism

Autism can present with speech and language delay or regression in communication skills, delayed speech being more likely than loss of previously acquired speech. Children with autism will likely present with additional signs alongside speech difficulties, such as problems with socialisation and an interest in a limited range of activities.

The committee noted the NICE guideline on recognition, referral and diagnosis of autism spectrum disorder in under 19s (CG128) and agreed to cross-refer. Once on the autism pathway, a differential diagnosis can be made by the specialist teams.

The committee noted that the current waiting list for autism assessment could be 2–3 years. If a child presents with the loss of speech and language accompanied by the loss of other developmental skills, the diagnosis is less likely to be autism, and the child should be referred urgently for neurological assessment.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where an outpatient visit cost £175 and a paediatric outpatient visit cost £285, the first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that the recommendations did not represent a change from current practice; therefore, the recommendations should not increase the number of referrals or costs to the NHS.

Targeted engagement exercise

There was a high level of agreement with this set of recommendations ranging from 72.2–94.4%. Therefore, the recommendations remained mostly unchanged except for minor refinement of the wording to make them clearer.

150.

Refer immediately children with new-onset squint that occurs together with loss of red reflex in one or both eyes to ophthalmology services.

151.

Refer immediately children with new-onset squint that occurs together ataxia, vomiting or headache to acute paediatric services.

152.

Refer urgently children with paralytic squint for neurological assessment, even in the absence of other signs and symptoms of raised intracranial pressure.

153.

Refer children with non-paralytic squint to ophthalmology services.

Recommendation 150 – Squint with loss of red reflex in 1 or both eyes

Loss of red reflex can indicate a retinoblastoma or other progressive pathology of the globe. Because of the risk of retinoblastoma spreading to the other eye, the committee agreed that referral should be immediate (same day). Children presenting with the onset of squint and loss of red reflex in one or both eyes should be diagnosed, scanned and operated on as soon as possible to decrease the impact on the patient’s vision. The committee recognised that the local service provision may vary, but ophthalmological services will be aware of the local pathway.

Recommendation 151 – Squint with ataxia, vomiting or headache

Squint presenting with accompanying symptoms such as ataxia, vomiting or headache may indicate raised intracranial pressure. The committee agreed that children presenting with squint and any of these symptoms should be referred immediately (same day). A paralytic squint, where the child loses the ability to move the eye fully in a particular direction is a sign of cranial nerve palsy. The most common is a sixth nerve palsy (abducens nerve) causing the eye to point inwards; the child is unable to move the eye to look outwards. Paralytic squints should be assumed to be caused by pressure on one of the cranial nerves involved in eye movements and the child should be referred same day.

Recommendation 152 – Onset of paralytic squint

Damage to the brainstem by tumour or inflammation can present with loss of movement of one or both eyes. This symptom should trigger urgent referral for diagnosis.

Recommendation 153 – Non-paralytic squint

In most children, an asymmetrical alignment of the eyes causes squint. In a non-paralytic squint, the child retains the ability to move the eye fully in all directions. The committee agreed that in the absence of any other signs or symptoms such as loss of red reflexes, ataxia, vomiting or headaches this would only require a routine referral to ophthalmology.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs showing that an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considering whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that the recommendations did not represent a change from current practice (in the case of the third recommendation, this is already recommended by NICE); therefore, the recommendations should not increase the number of referrals or costs to the NHS.

Targeted engagement exercise

As expected, this topic was not contentious and there was a very high level of agreement with the recommendations ranging from 94.4% to 100%. Therefore, no changes were made to the recommendations.

154.

Refer immediately children who have sudden-onset chorea, ataxia or dystonia for neurological assessment.

155.

Do not routinely refer children with simple motor tics that are not troublesome to the child.

156.

Advise parents or carers of children with a tic disorder to discuss the disorder with the child’s school, emphasising that the tic is an involuntary movement and the child should not be reprimanded for it.

157.

Do not offer medicine for motor tics in children without specialist referral and advice (see recommendation 159).

158.

Be aware that tics and stereotypies (repetitive or ritualistic movements such as body rocking) are more common in children with autism or a learning (intellectual) disability.

159.

For children with a tic disorder that has a significant impact on their quality of life, consider referring according to local pathways, as follows:

• referral to mental health services if the tic disorder is associated with symptoms of anxiety or obsessive compulsive behaviour
• referral to the neurodevelopmental team if the tic disorder is associated with symptoms suggestive of autism or attention deficit hyperactivity disorder
• referral for neurological assessment if the tic disorder is severe.

Recommendation 154 – Sudden-onset chorea, ataxia, dystonia or other involuntary movements

A sudden onset of 1 of these movement disorders can be a symptom of a progressive neurological disease such as a space-occupying lesion, metabolic disturbance, a degenerative condition, a para-infectious condition such as rheumatic fever or be drug-induced. Children with sudden-onset involuntary movements are at risk of developing further neurological signs and symptoms. All children should be referred immediately (on the same day) for a neurological assessment, ideally to a centre where specialist investigations such as an MRI of brain and lumbar punctures can be performed.

Recommendation 155 – Simple motor tic disorder

Tics are brief repetitive movements, usually of no purpose, which the child feels the urge to do but can suppress for short periods of time. They are a common symptom in children, particularly in boys. About 20% of boys will have tics at some time during childhood. Tics can take the form of vocalisations – grunting, snorting or whistling. They are usually simple motor tics and are more likely to occur when the child is anxious or excited. The child has a particular tic for some weeks and then it disappears to be replaced by a different tic some time later.

The vast majority of simple tic disorders resolve on their own within 2 to 3 years. Typically, the presence and strength of the tic varies. In the instances where the simple tic disorder lasts until the teenage years, it typically resolves by the age of early adulthood. With a clear history of intermittent simple motor tics in the absence of neurodevelopmental problems, a referral for further neurological assessment is not warranted.

Recommendation 156 – Advice to parents and carers

The committee noted that tics are more often of concern to parents and carers rather than to the child. Parents and carers may find tics irritating or be concerned that their child will be teased at school. Children can become anxious about their tics if they think they may be punished or told to stop the movement.

Parents and carers should be given a clear explanation that these movements are involuntary, that they are not part of a progressive brain disorder and that drawing attention to the movements may aggravate the condition. This will help parents and carers understand the nature of the condition. Parents and carers should be advised to pass this information onto schools and other carers with whom their children interact.

Recommendation 157 – Offering medication

Non-pharmacological interventions are the first line of treatment. Habit reversal therapy may be useful when the tics are causing the child distress in school or at home.

Drug treatment for a tic disorder is reserved for cases where the tics are functionally disabling and non-pharmacological treatments have been ineffective.

Typical neuroleptic drugs used to suppress tics are clonidine and neuroleptic drugs – pimozide, haloperidol and sulpiride. However, the side effects of such medications can be severe and irreversible. Only a specialist who is experienced in the use of neuroleptic drugs in children should offer them. The specialist can advise parents and children of the benefits and risks of neuroleptic drugs.

Recommendation 158 – Autism or intellectual (learning) disorders

Children with autism have a higher risk of developing involuntary movements such as tics and stereotypies. Stereotypies are simple movements such as body rocking, hand flapping or flickering fingers in front of the eyes. The child may be able to stop them voluntarily. The movements of a stereotypy may persist for minutes or hours unlike tics, which are very brief.

Epilepsy is more common in children with autism. The differentiation between involuntary movements and epilepsy can be difficult in a child with communication and intellectual (learning) problems; therefore, a referral may be appropriate for investigation and management of the neurodevelopmental disorders, as well as confirming the nature of the involuntary movements if the clinician cannot confidently exclude epilepsy.

Recommendation 159 – Tic disorder accompanied by symptoms of other neurodevelopmental disorders

Referral may be considered for management of tics that cause significant impairment of activities or quality of life, as drug treatment or habit reversal therapy can be considered to manage the situation.

Children who have tics in association with a neurodevelopmental disorder are likely to have multiple needs from different teams, including neurology, psychology and occupational therapy. As such, these children should be assessed and managed in a multidisciplinary setting.

Obsessive and compulsive behaviours presenting in association with tics are likely to be a symptom of Tourette’s Syndrome. These behaviours may have a significant impact on daily life and the child’s ability to participate in usual, daily activities. The management of obsessive and compulsive behaviours in children requires a multidisciplinary assessment and referral to the local service with appropriate skills.

Children with simple motor tics may develop an anxiety disorder if they are afraid that they will be punished, teased, or told to stop the movements. This can manifest in different ways including physical symptoms such as tremor, headaches and sweating, or emotional symptoms such as poor behaviour or refusal to attend school. The child and family will benefit from a discussion with someone who understands the problem and therefore they should be referred to secondary care if the tic and associated symptoms are sufficiently severe. This may not necessarily be to a psychologist in the first instance but could be a paediatric neurologist or developmental paediatrician.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and their cost to the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs where an outpatient visit cost £175 and a paediatric outpatient visit cost £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. The committee used these estimates as a starting point for considerations of whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee believes that the recommendations would reduce overall referrals to neurology and likewise would ensure that only those who stand to benefit from further interventions are referred. This would reduce costs to the NHS without compromising treatment for those that could benefit from it.

Targeted engagement exercise

There was a high level of agreement with recommendations 154–158, ranging between 89–94.7% and only minor edits to the wording were needed.

Recommendation 159 was originally 3 recommendations that received varying levels of agreement, ranging from 68.4–75%. Participants felt that these recommendations would be better combined. There was 5% disagreement (3 participants) with the original recommendation regarding referral of children with tic disorder and anxiety. It was not clear what the exact reason for disagreement was but some comments suggested that this recommendation may result in excessive numbers of referrals to psychology services and the recommendation was modified accordingly.

160.

Refer urgently children presenting with tremor for neurological assessment if:

• they have additional neurological signs and symptoms such as unsteadiness or
• the onset of the tremor was sudden.

161.

Be aware that isolated postural tremor in children may be a side effect of sodium valproate or a beta-adrenergic agonist.

162.

Consider thyroid function tests for children with postural tremor and other symptoms or signs suggestive of thyroid overactivity.

163.

Refer children with postural tremor for occupational therapy only if the tremor is affecting activities of daily living such as writing, eating or dressing.

Recommendation 160 – Tremor with additional neurological signs and symptoms or sudden onset

Progressive neurological disorders present with additional symptoms and signs alongside a tremor. Dystonic tremors are extremely rare in children. When they do occur, the child has usually had a long, pre-existing history of dystonia.

Tremor can occasionally be the initial symptom of a space-occupying lesion in children. Other signs of space-occupying lesions are usually present on examination, in particular progressive weakness. The tremor may be of sudden onset but a careful informant history is required to confirm that this is genuinely the case. Occasionally, children may present with a sudden onset of tremor related to a specific task. These children should be referred to exclude progressive disorders.

Recommendation 161 – Isolated tremor - iatrogenic causes

Isolated tremor is a dose-related side effect of sodium valproate and beta-agonists (for example, salbutamol). These drugs should be excluded as a potential cause before a referral is made. If they are thought likely to be the cause of the tremors, the prescriber should consider the potential benefits and harms of reducing the dose, withdrawing, temporarily stopping these drugs or changing to an alternative drug for the underlying condition.

Recommendation 162 – Thyroid function tests

Hyperthyroidism can be a cause of isolated postural tremor in children and should be excluded before referring. Thyroid function tests (in particular Thyroid Stimulating Hormone [TSH] and free thyroxine [FT4]) are available to non-specialists and should be requested if a postural tremor presents alongside other symptoms suggestive of hyperthyroidism to exclude it as a cause. If hyperthyroidism is confirmed, a referral to paediatric endocrinology is a more appropriate referral pathway than paediatric neurology.

For younger children, the referring primary care physician should consider whether to request the blood tests prior to referral if it is likely that the same blood tests would be repeated by the specialist. This is to minimise the distress caused by repeated drawing of blood from such young children.

Recommendation 163 – Tremor affecting daily living

As a tremor is rarely caused by a progressive neurological condition, effective management of the tremor should be the priority. An occupational therapist has the skills to assess how the tremor affects both home and school life. Children’s therapists will monitor the child and refer to paediatric neurology if necessary.

A tremor that has not changed over time and is seen in isolation with no other neurological signs and symptoms does not require neurological investigation, but it may need to be monitored. Parents may be anxious, so it is important to reassure them after taking a history and assessing that no further investigation is required.

The committee was provided with estimates of the number of referrals to neurologists from 2015/16 and how much this cost the NHS. During 2015/16, there were 517,806 first-time neurological outpatient attendances. Using NHS reference costs of an outpatient visit costing £175 and a paediatric outpatient visit costing £285, first-time referrals to neurologists cost approximately £93 million in total, or £87 million for adults and £6 million for children. These estimates were a starting point for the committee to consider whether its recommendations caused additional referrals that would have a significant cost impact on the NHS.

The committee agreed that the recommendations did not represent a change from current best practice, and that, viewed along with the rest of this guideline the recommendations should not increase the total number of referrals or referral costs should not increase. The committee agreed that thyroid function tests were either part of routine practice or would be conducted at some point within the patient pathway; therefore, the only change in practice would be to move the test to an earlier point in the pathway. This would not affect total costs to the health service, which should remain unchanged.

Targeted engagement exercise

There was a very high level of agreement with this set of recommendations ranging from 82.4% to 100%. Therefore, the recommendations were unchanged except for minor rewording to make them clearer.