Sleep medicine referrals

Information for families

As part of our service, we:

assess and manage children with complex problems related to sleep
identify and treat rare sleep disorders or diseases

The majority of sleep-related problems and symptoms in children and young people can be assessed, diagnosed and treated by either:

doctors working in general practice (primary care)
consultant children's doctors (paediatricians) working in general or community services or child and adolescent mental health services (secondary care)

Referrals to our service usually need to come from consultants working in secondary care, after an initial assessment has been made and treatment started.

We do not accept referrals directly from families, or from GPs.

We also do not usually accept direct referrals from doctors not working in the NHS (private practice paediatricians).

If you think your child has a sleep problem which may benefit from referral to our service, you should discuss with your GP or paediatrician in the first instance.

SNappD

We will often ask families to keep a sleep diary for their child as part of our initial assessment.

There are a number of apps that can make the process of keeping a sleep diary easy. Our team helped with the build of one called SNappD that is free to download. It sends you reminders each morning, and produces summary reports each week. It is secure and data is stored only on the person's phone who completes the diary, but has good sharing facilities so a parent could for example share by email with their paediatrician, or our service. Download Snappd on the App Store for Apple or on the Google Play store for Android phones.

Information for professionals

We're a tertiary referral service which aims to support consultants in secondary care (general and community paediatricians, and CAMHS psychiatrists) in the assessment and management of children and young people with complex, rare and refractory sleep concerns. Due to the highly specialist nature of our service, we accept referrals from a very wide geographical area.

Sleep problems in children and young people are common, and the vast majority of these are expected to be able to be assessed and managed in primary and secondary care. Only a very small proportion are expected to need referral to a tertiary service.

We cannot accept referrals directly from primary care, or where there is no ongoing secondary care follow-up clearly indicated in the referral.

We cannot accept referrals from paediatricians working in private practice, and all referrals must be made and supported by an NHS consultant paediatrician or psychiatrist.

Children can be referred up to the age of 16. Young people aged 17 or over should usually be referred to the adult sleep medicine department at Guy’s Hospital. Exceptions to this can be discussed with one of the consultant team.

All patients referred to our clinic should have been examined before referral by the referring secondary care consultant or team, and this should be documented in the referral. Initial assessment and attempted management of sleep difficulties are expected to have been completed in secondary care, and interventions attempted, and details of these should be documented in the referral.

We will not be able to accept a referral where the referring consultant has discharged the patient from follow-up, or where ongoing follow-up plans are not clearly indicated.

Where there are concerns regarding potential neurodevelopmental diagnoses (for example, social communication disorder, ADHD etc) it is essential that assessment for these conditions has been completed and appropriate support put in place.

We will not be able to accept a referral where this has not yet been done.

Anxiety in children and young people is common, and often has a significant impact on sleep. Our service is not able to provide ongoing support for children with significant anxiety, and this needs to be considered and provided at secondary care level.

Management of complex sleep problems often involves optimisation of management of all other existing medical problems which may impact on sleep. Sleep quality may be adversely affected by symptoms of a wide range of common (and less common) paediatric conditions, including but not limited to asthma, eczema, reflux, epilepsy, autism or ADHD. It is essential that these conditions are identified and managed where present.

Referrals should be made using our referral checklist referral checklist for sleep medicine (PDF 1.29MB) and emailed to gst-tr.PaediatricSleepSecretaries@nhs.net.

We offer a comprehensive range of diagnostic sleep investigations for children and young people.

Clinicians within Evelina London can request these directly on the EPR system.

External referrals for diagnostic investigations (only which cannot be done by local services) should be made by referral letter in the first instance stating the background history and investigation required.

In some cases, referral for diagnostic investigation only may not be appropriate and outpatient assessment may be more suitable. We'll discuss this with referring clinicians.

After a referral is accepted, children and their families are offered an initial 1 hour new patient appointment in either the general paediatric sleep clinic (majority of patients) or the paediatric narcolepsy/hypersomnia clinic (selected minority of patients). After this, an opinion and recommendations for management are made.

Patients will be appointed to the next available new patient appointment in the relevant clinic, and not to a specific consultant.

Diagnostic investigations may be carried out as part of the assessment. This may be done before the first outpatient appointment, or discussed and arranged after the initial assessment.

The majority of children and families seen in our service will be seen for a single assessment appointment, and will not be offered long-term follow-up.

Initial appointments are 1 hour long. Patients are appointed to the next available new patient appointment, and not to a specific consultant.

Any recommendations for management from our team should then be considered, and implemented if appropriate, by the referring secondary care consultant or team. Long-term or ongoing follow-up will remain with the referring consultant or team.

A minority of children and young people will be offered long-term follow-up with our service. This will principally be children and young people with a diagnosis of a primary sleep disorder (for example, narcolepsy). Our standard template for long-term follow-up patients is for children and young people to be seen every year in the tertiary sleep clinic, with the majority of follow-up continuing with the referring consultant or team.

For many children, even in those with complex medical backgrounds, behavioural intervention and modification is the foundation of improving sleep quality. Unfortunately we have limited capacity to offer ongoing behavioural support to all of the families that are seen in the clinic and therefore have to ask that behavioural interventions are supported locally. A selected group of children and families may be referred to our advanced sleep workshop, which supports behavioural intervention in the most complex cases.

With the sole exception of sodium oxybate for refractory narcolepsy, we cannot prescribe medicine directly from our service, and responsibility for consideration of prescription and monitoring of recommended medications will remain with the referring secondary care consultant/team. We're very happy to provide input into discussions about medication prescription, adjustment and review where required, for medications which have been recommended following clinic attendance.

Where local shared care arrangements are in place (for example, for methylphenidate) secondary care clinicians may ask GPs or primary care to take over prescription and monitoring of medicine, but this is the responsibility of the referring secondary care consultant to discuss with them.