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Gold Standard Care for Paediatric Long Covid: A Holistic Vision | The Patient Perspective

Writer's picture: Long Covid KidsLong Covid Kids


The impact of Long Covid on children and their families is profound. To address this complex condition effectively, healthcare providers must adopt a comprehensive and compassionate approach, grounded in collaboration, transparency, and continuous learning.


Current Long Covid clinics often fall short of meeting the needs of children and their families.

In August 2023, we developed the Gold Standard Paediatric Service Planning presentation—an aspirational benchmark outlining the best possible care: holistic, patient-centred, and rooted in collaboration. This framework serves as both a guide for service improvement and an advocacy tool to ensure that children living with Long Covid receive the care they deserve.


Moreover, these recommendations extend beyond Long Covid, offering valuable guidance for services supporting children with other post-viral diseases and overlapping conditions, including Paediatric Multi-inflammatory Syndrome (PIMS), Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), Postural Tachycardia Syndrome (PoTS), Paediatric Acute-onset Neuropsychiatric Syndrome (PANS), and Mast Cell Activation Syndrome (MCAS).


Building on this work, we aim to contribute to a more comprehensive and inclusive approach to paediatric care.


Listen to the audio of the presentation here it will open in another window.

Scroll through the gallery below to view the slides.




A Patient Perspective. Gold Standard Paediatric Long Covid Service Plan Overview.



Infection Control

A safe clinic environment is fundamental for patients and staff. Proper air filtration, ventilation, and mandatory mask-wearing are essential to prevent reinfection and transmission. Families should feel reassured that these measures are prioritised, recognising the emotional toll of entering spaces where such precautions are overlooked.


Specialist-Led Care

Paediatric Long Covid clinics must be led by consultants experienced in post-viral conditions, including ME/CFS, PoTS, Dysautonomia, MCAS, and PANS. Clinicians with this expertise can offer families a supportive and informed medical journey, leading to better outcomes and increased trust in the service.


Interdisciplinary Teams

Effective care requires collaboration across multiple disciplines, from cardiology and neurology to physiotherapy and speech therapy. This integrated approach ensures each child’s unique needs are met, providing holistic support that improves outcomes and enhances their quality of life.


Removing Barriers to Care

Accessing healthcare can be challenging for families, especially those managing a child with mobility or sensory issues. Clinics should address practical barriers, such as parking, accessibility, and appointment logistics, to ensure families feel supported rather than overwhelmed. Failure to do so risks families disengaging from vital services.


Patient Safety

Safety must come first. Clinics should conduct thorough multi-system screenings before rehabilitation, including checks for PoTS, orthostatic intolerance, and post-exertional symptom exacerbation. Following NICE guidelines for ME/CFS is critical while Long Covid-specific guidance continues to develop. Regular reviews are essential to monitor evolving symptoms and provide timely interventions.


Holistic Support

Long Covid clinics should treat families with empathy and respect. Early identification of underlying issues is crucial, and communication with schools and community services must be clear and actionable. Simple measures, like template letters for schools to implement flexible schedules, can significantly affect a child’s education and social interactions.


Recognising Non-NHS Healthcare

Many families have turned to private care due to delays in NHS service development, often at great personal expense. Clinics should respect and incorporate insights from non-NHS providers, fostering collaboration to ensure the best possible care.


Tailored Treatment and Monitoring

Treatment plans should focus on improving functional living and quality of life. Regular reviews and discharge planning must be family-centred, ensuring families feel supported and have a clear pathway to re-access services if needed.


Transparency and Communication

Clear communication is key for any gold-standard service. Families need guidance from the outset, including self-management advice while waiting for appointments. Signposting to resources like Long Covid Kids can provide vital support when NHS services are stretched.


Continuous Learning

Healthcare providers must stay informed about the latest research and share knowledge across services. Families often bring new insights to appointments, and clinicians should be prepared to engage with this information thoughtfully and collaboratively.


Conclusion

A Gold Standard Paediatric Long Covid Clinic should be a centre of excellence, offering compassionate care, interdisciplinary expertise, and a commitment to innovation. By prioritising patient well-being, transparency, and collaboration, we can create a brighter future for families and children living with Long Covid and related illnesses.



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