This blog shares insights from an ongoing research project that explores how the health systems response to the coronavirus (Covid-19) pandemic affected children and young people with long-term conditions in the UK. Based on a scoping review of academic studies, and subsequent focus groups with healthcare practitioners, parents and carers, the project examines the impact of the pandemic on healthcare delivery and access, the potential of innovative practices developed during the pandemic, and how service restrictions have affected children’s health. Here, Jenny Greenwood (Kings College London) and Sapfo Lignou PHD (Project Lead, University of Oxford) reflect on the first stages of the research and summarise some of the concerns emerging from their work.
When Covid-19 emerged in the UK in March 2020, and as cases proceeded to rise dramatically over the subsequent weeks, NHS England was required to react quickly. Healthcare resources were redeployed to respond to local Covid-19 challenges . The UK government instructed GPs to conduct remote triage care to patients and in both the first and second wave of the pandemic community teams were redeployed to acute adult services. The government asked the public to stay at home wherever possible and people considered clinically vulnerable were told to shield . Published evidence suggests that the government shielding directive severely impacted children and young people’s access to care. This was confirmed in our discussion with child healthcare professionals. As one community paediatrician noted, at the start of the pandemic there was a long list of vulnerable children instructed to shield, meaning health professional’s access to this highly vulnerable population was worryingly limited. Another paediatrician went on to tell us that this list was subsequently modified, however this indicates a failure to consider the healthcare needs of children with chronic conditions within the emergency response. The combination of prioritising the emergency response to Covid-19 and government guidance to the public had a significant effect on the provision of, and access to, healthcare particularly for children and young people with medical complexities .
There are 1.7 million children and young people with chronic conditions such as asthma, epilepsy and diabetes in England . The health and wellbeing of these children relies on close medical monitoring, regular routine appointments and thorough education of both the children and their caregivers on the management of symptoms and treatment plans, all of which were significantly hindered during the pandemic. The relative shut-down of children’s healthcare services can be understood in terms of the incredible strain on NHS personnel and resources but still requires close examination. This project aims to understand and bring to light the ways in which this vulnerable group of children and their families were affected by the changes made to the healthcare system, and to provide ethical guidance for how the needs of these children should be considered in future emergencies of this kind. The work is informed by existing research on the topic as well as the views of healthcare professionals and parents and carers of children with chronic conditions.
Following the guidance issued to healthcare services and to the public, the impact on children and young people’s access to healthcare became immediately apparent. Because GPs were asked to limit contact with patients, the delivery of primary care changed significantly, with contacts below the average of the previous three years . Parents reported difficulties getting hold of their GP as well as trouble acquiring prescriptions . The number of children presenting at A&E also decreased . Given this, health professionals were highly concerned about the potential for delayed or missed diagnoses, particularly worrying in the case of diabetic ketoacidosis which is a severe and life-threatening complication of diabetes which requires early diagnosis to begin treatment . There are grave concerns about the delay to diagnoses of cancer, which like diabetes requires swift diagnosis and treatment . Professionals estimated that approximately 3291 – 3621 avoidable cancer deaths among adults and children that will occur over the next five years due to missed or delayed diagnosis .
There were mass cancellations of children’s surgery and other medical investigations due to the health system’s prioritisation of the Covid-19 response. Children with epilepsy were affected by the significantly reduced use of EEG, and those with inflammatory bowel disease were often diagnosed without the usual endoscopic assessment because of the reduced use of endoscopy at over 90% of centres across the UK [5, 9]. Paediatric surgery fell to 12–20% of normal activity in the most overwhelmed parts of the UK  and between April – Sept 2020 surgical activity for epilepsy was limited or stopped entirely . Children and young people with inflammatory bowel disease were not offered their usual routine monitoring appointments which detect deterioration in their condition.
Further concerning evidence that emerged from the review related to the increase in disease severity amongst children and young people with chronic conditions. Many of those with epilepsy experienced more regular and severe seizures due to difficulties accessing medicine, reduced access to health professionals and the stress and sleep problems associated with the pandemic . Because of the differing risk factors associated with the conditions in question, the level of impact is not consistent across them. Indeed, according to the evidence from our review, not all conditions were adversely affected during the pandemic. Many children with asthma experienced a decrease in symptom severity, likely due to a reduction in air and road traffic, restricted travel, shielding and social distancing . However, a contrasting view was given by a consultant in paediatric respiratory medicine, who said that while many people with asthma experienced less severe symptoms, there is a subgroup of complex patients who “spiralled out of control in the last 18 months”. They reported that often these were patients with co-morbidities such as “breathing pattern disorder, anxiety, social inequalities and safeguarding issues and virtual appointments were not adequate to pick up early signs of deteriorating health or family disengagement.”
It was not just a matter of frequency of reporting, the nature of healthcare delivery transformed. One of the most significant changes to the provision of children’s healthcare is in the use of telemedicine, which has been widely used for the care of children with chronic conditions including asthma, diabetes, neurodevelopmental conditions. It has been particularly important for children and young people with mental health difficulties who otherwise would not have had access to their usual psychological support . Digital exclusion has been a concern to many professionals in various fields during the pandemic, but it was particularly problematic in areas of children’s healthcare. While the introduction of telemedicine improved access for many children and their families, it also shone a light on existing health inequalities, perpetuated by the reliance on access to technology and digital understanding . It also excluded many children and young people with disabilities such as hearing problems, or neurodevelopmental difference such as autism spectrum condition many of whom found accessing support in this way extremely difficult . The healthcare professionals we spoke to referred to the pressure they felt to keep a significant number of appointments virtual, resulting in an “increased risk of harm and sub-optimal care for young people” according to one sleep consultant. This consultant expressed concern that it is difficult to predict which children or young people will be most affected by the lack of face-to-face care. Although better than nothing in some cases, telemedicine is by its nature limited and may have resulted in missed or delayed diagnoses, particularly in the case of diabetes and cancer, which could have a serious impact on mortality rates [8, 16]. A consultant in paediatric respiratory medicine told us that some of weaknesses of the existing virtual system will be improved by new technologies being for remote monitoring of patients’ physiology and adherence, however they went on to explain that multiple barriers have delayed their implementation.
The absence of normal social contact with education or social care professionals has potentially serious implications for safeguarding. Concerns emerged from our scoping review about the number of children and young people who experienced maltreatment or domestic violence that was unknown to professionals . The professionals in our focus group echoed these safeguarding fears. They told us that at the start of the pandemic they had raised concerns that safeguarding referrals would fall with schools closing, health visiting services moving to a virtual model and parents’ reluctance to seek healthcare advice, and this was borne out in the data. There is also significant concern about the reduction in psychological support available during the pandemic, particularly concerning for children with chronic health conditions who are more likely to experience psychosocial difficulties . A clinical director of community paediatrics who took part in the focus group explained that he had seen a regression in the strength, ability and skill-level of children with neuro-disabilities because of the loss of usual school-based activities.
Another concern that emerged from our focus group discussion with healthcare professionals was around the long-term impact of restrictions on parent care during visits to the Neonatal Intensive Care Unit. A consultant in that department raised a concern that the impact on families of restricted visitations will not be known for many years, but that these NICU patients will likely comprise the long-term condition patients of the future, and their care and the care of their families was diminished by the pandemic response.
Covid-19 has marginalised child services to an even greater degree than before. A clinical director of community services noted that it was difficult to balance the needs of children with the requirement to prioritise Covid-19 patients. Professionals endorsed “the need to take a different approach for children’s community services” and a letter was sent to ministers in the winter of 2020 requesting that children’s therapists not be redeployed in the next wave of the pandemic, but they did not “appear to have weight in decision-making at the point it came out.”
This marginalisation has had serious consequences. The evidence that emerged from our review and the input we received from the healthcare professionals indicate that children’s health and wellbeing have been neglected during the pandemic. There is a concerning amount of unmet need among children and young people with chronic conditions, which will already have caused increased disease severity and greater health risk across various physical and mental health conditions . Although telemedicine helped meet the needs of many children, language barriers, disability, neurodiversity and digital disparities means many populations have been under-served .
Moving forward, policy makers need to recognise the special needs of child services. The relatively small number of studies exploring the impact of health systems changes on children during the pandemic suggests that more careful consideration of their needs is essential, particularly when evaluating the pandemic response. The lack of research into child health does not only apply to the subject of Covid-19 but is a wider problem suggesting the potential of bias in healthcare planning and the development of information technology . More research is needed to understand the effect of the health system changes on timely diagnosis and effective treatment and the impact of this on paediatric patients. Understanding this is a vital step towards a more effective and equitable health system response to future emergencies.
We have gathered evidence about changes to the delivery of healthcare for children with chronic conditions, and its impact on their physical and mental health, both from emergent literature and health professionals’ feedback. Our findings will inform a further piece of work designing an ethical framework that considers the needs of children and young people with chronic illness in the prioritisation processes required in the pandemic context and beyond.
Jenny Greenwood, MSc, is a researcher at the Department of Women and Children’s Health, King’s College London.
Sapfo Lignou, PhD, is a Senior researcher in Bioethics, Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford.
For more details on the UKRI funded research see:
Lignou et al., ‘Changes in healthcare provision during Covid-19 and their impact on children with chronic illness: A scoping review.’ INQUIRY: The Journal of Health Care Organisation, Provision, and Financing. 2022.
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