Reviewed on : 8 Mar 2024

Reviewed by : GP Gateway Editor

Expires : 8 Mar 2026

Long-COVID Paediatric Referrals CYP West Midlands

Birmingham Children’s Hospital (BCH) are accepting referrals for its Paediatric long-COVID Assessment Service, serving patients and professionals across the West Midlands.

This has been designed at a regional level and Birmingham & Solihull CCG commissioned according to national commissioning guidance.

One of 15 paediatric hubs across the country, the service is designed to assess patients experiencing long-term health effects following COVID-19 infection.

Referral, Assessment and Onward Access to Follow-Up Services in the West Midlands      

Parents in a Long COVID support group have reported that following SARS-CoV-2 infection, their children experienced:

• Fatigue
• General gastrointestinal issues
• Sore throats,
• Headaches
• Muscle pain
• Weakness
• Other symptoms included fevers, nausea, mood changes, rashes, dizziness, breathing difficulties, and cognitive blunting.

Clinical Case Definition of Post-COVID syndrome

NICE (National Institute for Health and Care Excellence) produced a rapid guideline in December 2020 jointly with the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP). It introduced the following definitions:

• Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks.
• Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks.
• Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19 continue for more than 12 weeks and are not explained by an alternative diagnosis.
• Long COVID: In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID It includes both ongoing symptomatic COVID 19 and post COVID 19 syndrome (12 weeks or more).

Referral Pathways

Most CYP with persistent symptoms will not have been hospitalized during the acute phase of their illness.

Referral may be from many routes, community child-development service, community therapies, CAMHS, primary care etc.

Post-COVID syndrome may involve changing symptoms or new symptom development. In particular, children with SEN or neurodisability may not be able to express new symptoms, so careful consideration of changes in behaviour etc should be reviewed

Tests and investigations should be offered that are tailored to people’s signs and symptoms to rule out acute or life-threatening complications and find out if symptoms are likely to be caused by ongoing symptomatic COVID-19, post-COVID-19 syndrome or could be a new, unrelated diagnosis

Self-management tools should be made available to the CYP and their families while awaiting referral (Currently work in progress for unified tools to be used nationally)

Initial assessment should be by the GP with symptoms appropriately investigated for an alternative diagnosis.

An assessment should be carried out by the GP, using a holistic, person-centred approach. This should include a comprehensive clinical history and appropriate examination that involves assessing physical, cognitive, psychological and psychiatric symptoms, as well as functional abilities.

If further investigations or support are required, the patient may be referred onwards. Whilst this may be most appropriate from 12 weeks for many, there may be some CYP who need it earlier. The timing is based on individual need and is at the discretion of the assessing clinician. However, most patients will improve or recover by 12 weeks.

It is not expected that all CYP will need referral from primary care onwards – many of these young people can be managed by their GP with simple measures including advice (sleep hygiene, gentle exercise, liaison with school), common investigations and treatment.

In the first instance, it is recommended that primary care links in through established routes to secondary care for advice – this may be through integrated care, or through advice lines, depending on the local arrangements.

Referral to a local general paediatrician for investigation of alternative diagnoses is recommended if there are ongoing concerns which are not settling with simple interventions

It is not expected that all CYP will need referral from secondary care to the virtual MDT/specialist assessment clinics. Many general paediatricians are experienced in the management of CYP with persistent symptoms, but where there is significant functional impact, or concerning symptoms, it may be appropriate to refer onwards.

Assessment should be completed by the general paediatrician before referral to the Post-COVID Specialist Assessment Clinic.

A virtual MDT will be held regularly by the post-COVID assessment clinic team and participation by the referring paediatrician to discuss the case is encouraged.

Primary Care Referrals

GP Screening and Triage

• A significant proportion of children are believed to be asymptomatic acutely.
• It is recommended that if the patient thinks they have had an infection, been in contact with someone who has had it, or had a positive test; they are eligible for referral.
• A family based approach is needed, as there are similar patterns of management and parental anxiety feeds into CYP anxiety and symptoms.
• Many patients may be able to self-manage with support and will not need to attend the post COVID assessment service.
• Some may progress directly to specialist care if they have urgent or specific conditions.

GP referral

• 12 weeks of persistent symptoms is the typical point of referral for adults.
• CYP patients may be referred earlier than this, between 4-12 weeks, if the GP is concerned after discussion with the local paediatrician.
• Red flags for referral include missing school despite the introduction of simple measures

Face to face GP assessment

Background

• COVID-19 Diagnosis: Confirm if/when the patient is believed to have had COVID-19
• History: Take the patients’ history including potential fluctuating symptoms and trends
• Patient baseline: Gain an understanding of the patient’s functional baseline prior to contracting COVID-19
• Examination: Conduct a patients’ examination

Investigations

• Initial Investigations: Pulse, oxygen saturations, Blood pressure, Urinalysis (protein, blood glucose)
• Blood Tests:  FBC, Blood film, U+E, creatinine, LFT, TFT, ESR, CRP, Blood glucose, Coeliac Screen, CK, Ferritin (N.B these should be tailored dependant on symptoms)
• Trial of Simple Measures:  gentle exercise, sleep hygiene, liaison with school. If these measures have been done and significant impact on quality of life/school/home, refer.

Social assessment

• Understand the patients’ social needs: Impact of condition on family, education etc.

GPs should contact their local paediatrician to discuss a case if there is an unclear diagnosis or they would like advice.

GPs who suspect post-COVID syndrome should refer into general paediatrics using the attached referral form, which firstly requires a set of diagnostic tests to rule out more routine causes of health problems.

Secondary Care Paediatric Services

Paediatric assessment

• Patients must be appropriately screened in Primary Care, as part of the paediatric-led triage and during the Virtual MDT/Specialist Assessment Clinic to ensure nothing is overlooked before they are referred to follow on services.
• The detailed assessment undertaken within the clinic should support understanding of the patient’s trajectory. In addition to the clinical assessment, a social assessment of the patient should also be incorporated.
• There is a clear need to collect data on the patients being referred to the Assessment Clinic, as well as a capture of their experience, to develop understanding of the condition and its impacts as well as inform future service provision.
• The referral template contains the inclusion and exclusion criteria that should be considered by the paediatrician (via the paediatrician-led triage) as part of determining a child/young person’s suitability for referral to the Virtual MDT.

Paediatric Clinic Screening Tests

• Screening tests to be conducted by the local paediatrician ahead of the Virtual MDT may include:
  • FBC, ESR, CRP, Blood film, Thyroid function, Liver function tests, renal and bone profile, CK, Ferritin, coeliac screen, ANA, SARS-CoV-2 serology, vit D, vitamin B12, iron studies, EBV and CMV serology and PCR.
  • Additional investigative bloods including Troponin, D-Dimers and VWF/ADAMTS may be undertaken based on clinical judgement
  • Faecal calprotectin (if abdominal symptoms)
  • Urine albumin/creatinine ratio
  • ECG (if palpitations, breathlessness etc); cardiac ECHO only if indicated following MDT discussion
  • Imaging as appropriate (e.g CXR, abdominal USS)
• Some tests may be required earlier (i.e if the patient has an abnormal sit-to-stand test/ six-minute walk test result or chest pain). Further guidance is to be developed to support Paediatricians conducting sit-to-stand tests. However, it is recommended that physiotherapists should conduct the six-minute walk test if required.

Virtual MDT Assessment

• The Virtual MDT will bring together professionals from across different specialties to discuss referrals received.
• The Virtual MDT will review referrals and share advice for the ongoing management of CYP led by local services across primary, secondary and community care and including consideration of supported self-management tools/digital assets as well as the identification of need and facilitation of onward referrals – i.e to CAMHS/cardiology
• CYP who require further expert input (due to complex, unexplained or worsening symptoms, or through meeting thresholds) will also be identified and subsequently referred onto them.
• A family-based approach is needed, as there are similar patterns of management and parental anxiety feeds into CYP anxiety and symptoms.
• Local Consultant Paediatricians can refer to the Virtual MDT having completed a comprehensive assessment as detailed in the previous section and completing the referral form. Further communications outlining the mechanism for referral will be shared.
• Referral and any investigation results should be available 72 hours ahead of the MDT meeting. These will be collated by the MDT Co-Ordinator and shared with members of MDT team. The MDT coordinator will also enter details of referrals into a database, including details of onward referrals, management and outcomes.
• In advance of the MDT, referrals will be reviewed, in part to facilitate correct membership, with pre-discussions or in-meeting discussion with appropriate specialist taking place – i.e. discussion of CYP with significant headaches, should include neurology specialists.

Additional Virtual MDT Workforce for consideration

• Other clinical specialties can be invited as appropriate (e.g cardiology/ respiratory/gastroenterology)
• Learning Disability/Education representation
• Proactive case finders
• Consideration of new roles

Onward referrals

• Following assessment at the Virtual MDT, a subset of the CYP population will be identified as meeting the threshold for referrals directly to local services
• A subset of the CYP population may need bespoke input from specialist expert tertiary teams and/or will be identified as meeting the threshold for referrals directly to specialist tertiary services.
• The relationship between the Virtual MDT and Specialist Clinics should be seen as two way where patients may be discussed on more than one occasion
• Others may warrant further assessment and it is likely that this will be largely led by AHPs and Psychology professions.
• Following assessment and identification of management needs within these clinics, CYP will be referred to the appropriate community services, self-management tools etc.
• To facilitate data collection and informing understanding of the condition, the Virtual MDT should be updated of patient outcomes.

Potential Interim resources that can be helpful

(Note these are for children with CFS/ME but some information can be extrapolated in the interim)

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/leaflets.asp

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/resources_for_professionals.asp?menu_id=1

https://www.rcpsych.ac.uk/mental-health/parents-and-young-people/information-for-parents-and-carers/chronic-fatigue-syndrome

Key Principles of Care for Post COVID:

Personalised care

By listening to people and asking, “what matters to you?” a personalised care and support planning process based on what matters most to individuals is a crucial initial step in providing personalised care.

To help health and care staff with the knowledge, skills and confidence to deliver personalised care, they can access the Personalised Care Institute (PCI). This allows clinicians to access PCI accredited eLearning, view accredited training providers and programmes as well as access high quality resources (to support learning) in the core skills of personalised care, personalised care and support planning and shared decision making.

• More information can be found NHS England » Personalised care.

Multidisciplinary support and rehabilitation

A multidisciplinary team should tailor support and rehabilitation for the person to enable:

• the development of individual care plans for physical, mental and social needs which may include supporting people through the Your COVID recovery interactive rehabilitation platform
• access to clinical review in primary care and more specialist advice or rehabilitation when needed

Supporting and enabling self-care

Some people with milder symptoms may be able to help themselves through self-management.  Options to enable people with self-care include:

Signposting to Your COVID Recovery online rehabilitation platform to enable ongoing support and enhance self-care, or other NHS-endorsed online support services; There is currently ongoing work to develop additional resources tailored to Children and Young People. These will be published and communicated widely when available;

Techniques such as shared decision making, SMART goal setting, health coaching, virtual group consultations for peer support and social prescribing, linking with the third sector in recognition of the whole-person biopsychosocial needs; and conduct assessment of patient activation, using available tools where appropriate, to help to determine the level of support required

Holistic Assessments

It is important that an early holistic, medical assessment is performed in CYP with suspected Post COVID to identify those in need of further specialist input and management for organ impairment, as well as offering appropriate support for other wide-ranging symptoms that may significantly affect quality of life.

As with adult services, some CYP may need further therapeutic input, rehabilitation, psychological support, specialist investigation or treatment once they have been assessed, and patients should be referred to existing services as needed.

For all CYP, the impact of the illness on the child and family as a whole unit should be assessed, including day-to-day functioning and access to education

It may help to consider the following as part of Post COVID assessment:

• Discuss how the child’s life and activities have been affected by ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome, e.g. education, mobility and independence.
• Listen to the CYP’s concerns with empathy and acknowledge the impact of the illness on their day-to-day life, education, and wellbeing.
• Discuss the CYP’s experience of their symptoms and ask about any feelings of worry or distress.
• Consider alternate diagnoses for their symptoms.
• Be aware of wide ranging and fluctuating symptoms after acute COVID-19, which can change in nature over time.

Be aware of possible symptoms and signs suggestive of possible specific organ impairment such as chest pain, palpitations, breathlessness and symptoms or signs suggestive of possible ongoing inflammatory or autoimmune response, e.g. recurrent fever, rashes, joint symptoms, weight loss. These children may need specific investigations and timely discussion/referral to tertiary paediatric specialists.