Dear Colleagues
Children and Young People (CYP) who have been affected by Post COVID symptoms
I would like to start by thanking you for all the hard work over the past many months. I am writing to update you on the arrangements put in place for Children and Young People (CYP) who have been affected by Post COVID symptoms, known colloquially as ‘Long COVID’. NHS England and NHS Improvement announced a national offer of £10million in 2020/2021 to support the establishment of Post COVID clinics, of which London received c. £1,682,000 for the provision of Specialist Assessment Clinics. A further announcement regarding funding for the provision of these services in 2021/22 for adults and children and young people is expected imminently.
Although the demand for services for the CYP population is currently smaller, equitable access for all those who require it, is paramount. A collaborative virtual MDT is to be established, reflecting a partnership with University College London Hospitals NHS Foundation Trust, Evelina London Children's Hospital and Great Ormond Street Hospital for Children NHS Foundation Trust. ICSs are asked to start to communicate with providers across their areas and to prepare for its launch. Local paediatrician referrals to the MDT can be sent to the centralised inbox (london.cyppostcovid@nhs.net) from Monday 19th April using the attached referral form with the virtual MDT starting the following week (week commencing Monday 26th April).
The designated Virtual MDT will bring together clinicians from across different specialties and professions in London to discuss referrals received from local paediatricians for individuals with complex symptoms and presentations. 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. Local paediatricians will be paramount in the pathway as gatekeepers to the virtual MDT.
To ensure that the right care is provided in the right setting there is a need for Pan-London principles for the identification of patients so that appropriate support can be provided to them. A new clinical reference guidance for London has now been agreed with the London-wide Clinical Advisory group and published (attached) for the post-COVID syndrome pathway as a ‘living document’, reflecting the limited available research evidence for this novel sequela. The guidance has been developed in conjunction with clinicians across London with a commitment to further review and iteration and to ensure alignment with the evolving data. In addition, ‘pan-London’ referral forms have been created to aid primary care referral to local paediatricians and for local paediatricians to refer into the Virtual MDT.
Data collection to inform a case definition and develop understanding of the breadth and size of the clinical need is paramount to inform further planning and development of the provision of services. To enable this, accurate coding in primary care will be key. All children and their families should be invited to complete the ISARIC symptom questionnaire (to be published shortly) to aid improvement of the understanding of the presentations and trajectories. We would ask GP and local paediatricians to direct families to complete the symptom questionnaire to improve our understanding of presentations, impact and trajectories.
The importance of strong collaboration and integration across primary, secondary and community services in delivering care to meet the needs of patients is recognised. Whilst the Virtual MDT is a significant part of the whole care continuum for children with Post COVID syndrome who may require it, it is important to highlight that it is only one part of the Post-COVID syndrome pathway. To ensure consistency in care provision it is important that all staff across primary, secondary care and community care are aware of the available referral routes, pathways and options for access for CYP experiencing post-COVID syndrome, with particular consideration of access equity. ICSs are also asked to engage with educational providers given the importance of schools in the safeguarding and welfare of these individuals.
We need your support to ensure that the right patients receive timely care as you in the primary care are likely to be the first point of contact for many of these individuals, in identifying the need for initial investigations, and managing patients through acute, ongoing symptomatic and into Post-COVID Syndrome stages. There will also be a need to undertake proactive case finding, particularly for communities where there is existing evidence of disparity in COVID-19 outcomes and risk.
We appreciate that the absence of robust evidence for this patient cohort creates some elements of uncertainty. Led by Evelina London Children's Hospital and Imperial College Healthcare NHS Trust, materials for staff, children and young people and their family are being developed and will be published and made available as soon as possible. In the coming months we will be working to establish a learning system to rapidly respond to the emerging experience of clinicians and pathway data. If you have further questions around this guidance please contact the London Clinical Advisory support team on by emailing england.londoncagsupport@nhs.net.
I would like to take this opportunity to thank you for your ongoing hard work during these very challenging times.
Yours sincerely
Dr Vin Diwakar
Regional Medical Director and CCIO