Written evidence submitted by the Royal College of Paediatrics and Child Health (CBP0056)

 

 

Background

The Royal College of Paediatrics and Child Health (RCPCH) is responsible for training and examining paediatricians, setting professional standards and informing research and policy. RCPCH has over 19,000 members in the UK and internationally. We work to transform child health through knowledge, research and expertise, to improve the health and wellbeing of infants, children and young people across the world. 

 

 

Summary

The discussion around the elective backlog caused by the pandemic has tended to describe single items or treatments to strike off a list, such as a particular surgery. However, the backlogs of care in paediatrics and child health are not always so neatly defined. Child health involves a lot of prevention, and both prevention and treatment have a large community footprint in terms of services. These services were substantially affected by the pandemic (section 2.2) and are more likely to bear a longer-term impact. Missed opportunities for prevention and early intervention may affect children and young people’s (CYP) health outcomes for years to come and follow CYP into adulthood.

 

This undoubtedly makes the challenge of addressing the paediatric backlog greater, as it is very difficult to build a clear understanding of what is needed, and by whom. This is because of long-term issues with the way data for CYP health and wellbeing is collected in a variety of settings, by different agencies in different locations. For example, some Local Authority areas will have children’s centres where this data will be collected but not all. Some schools will have school nurses and others won’t. Some children, especially those with complex needs or who are vulnerable, will have more significant needs because of the impact of the pandemic on their health due to a delay or pause in access to therapies.

 

Nearly all children will have some needs in terms of health service catch-up because they have missed universal services and programmes, such as immunisations, as these are largely delivered through schools. The reduced availability of these programmes disproportionately harm CYP from deprived backgrounds who already have worse health outcomes than their peers. The need to reduce health inequalities is one reason these programmes must be caught up as quickly as possible. Much of the most pressing paediatric backlog relates to CYP mental health need, where prevalence has undoubtedly increased over the pandemic and access to services is becoming ever more difficult. The nature of some children’s needs is time-critical, and so there are sensitivities in terms of priorities as services address the backlog created by the pandemic.

 

Paediatric services, mental health services, NHSE, local systems, DHSC and the wider UK Government all have critical roles in the coming months. What is needed from them all is integration, multidisciplinary working, and recognition that the CYP backlog is fundamentally different in nature and requires a bespoke response.

 

To support this, the NHS needs a sustainable, multi-year settlement from Treasury to allow for planning and prioritisation, wider long-term funding for other CYP services, Child and Adolescent Mental Health Services (CAMHS), Local Authorities and voluntary services. The Health and Care Bill provides a significant opportunity for improving CYP care and health outcomes, but it must be seized to its full potential. In addition, a cross-government children and young people’s health and wellbeing strategy will ensure joined-up thinking in Whitehall, which will in turn ensure children are at the heart of recovery from the pandemic.

 

 

1.               Context

1.1               Size and nature of paediatric backlog

The nature of child health means it is difficult to get an accurate measure of the paediatric backlog. The latest data says over 267,000 children and young people are currently waiting for NHS treatment, with significant variety between regional areas.[1] However, it is unlikely this figure represents the full picture of the paediatric backlog. This is particularly the case with regard to community child health services where data are not captured in the same way as it is for primary and secondary services. There is a tendency to think of elective care as a single treatment or intervention to tick off a list, but this is not an accurate way to envisage the paediatric backlog as a result of the pandemic. The window for treatment or intervention to have a positive effect is smaller for CYP than it is for adults. For example, a child may have been waiting for several months for grommet surgery (to help with their hearing). As a consequence of the long wait, many will have deafness leading to difficulty in learning and impaired language development and may need to work with a speech and language therapist and require additional support in school to remediate this.

1.2               Children with complex needs

There is a much smaller group of around 80,000 CYP with complex needs[2], who will have multiple needs in terms of ‘catch-up.’ This is because they would usually be in receipt of care from a range of different providers. Furthermore, these needs interact with each other, and the lack of access to one treatment over the duration of the pandemic may have seen the number, severity and complexity of the needs increase.[3] For example, children awaiting neurodevelopment assessment may now have a longer wait due to the backlog caused by the pandemic, and their cases may now be more complex and require the involvement of more clinicians or agencies.  Community paediatricians repeatedly tell us that seeing children with complex needs is critical. The pandemic has meant that there have been many missed opportunities to recognise or address developmental issues. In addition, children may have outgrown equipment or aids provided by community child health teams or had limited access to therapists. Not having timely access to therapies and appropriate aids can have severe consequences for their skeletal development, language development or feeding skills. In order to support children with complex needs, there must also be sufficient investment in education and early years support and catch-up funding. Many children will not have had social contact outside their immediate family for 18 months, and for very young children, at all. Support delivered in an education setting will ensure children are not getting prematurely labelled with neurodevelopmental disorders when it is not appropriate.

1.3               Mental health

College members across paediatric specialties repeatedly tell us that they have seen a worrying increase in CYP with severe mental health difficulties. Paediatric beds are under significant pressure due to the increase in CYP with serious mental health problems – doubling compared to 2019.[4] Paediatricians specialising in eating disorders in CYP have told us the number of patients unwell enough to be in hospital since the pandemic have doubled, tripled or even quadrupled.[5] Additionally, 38% of respondents to the survey on the impact of COVID-19 on child health services said they did not have effective joint pathways with CAMHS in their local area which means more CYP are getting to crisis point.[6] In addition to those CYP who require hospital care to meet their mental health needs, we know that the rate of probable mental disorder has increased in five-to-16-year-olds from one in nine in 2017 to one in six in 2020.[7] We must also acknowledge that waiting lists for CYP mental health services were already oversubscribed before the pandemic.

 

1.4               Public health and health surveillance

Nearly all children will have some needs in terms of health-service catch-up because they have missed universal services and programmes, such as immunisations, as they are largely delivered through schools. There was a 20% drop in the number of teenagers in England getting routine immunisations following the first lockdown, and a 2% drop in the number of younger children having their first dose of the MMR vaccine.[8] As schools have been closed to the majority of pupils at different points in the pandemic, the delivery of surveillance programmes through schools, such as the National Child Measurement Programme (NCMP) have been paused. Another example is supervised tooth brushing schemes for younger children. Given that both the health indicators relating to these programmes – obesity and tooth decay – are clearly linked to deprivation, it is vital they are caught up in order to make meaningful progress towards reducing health inequalities. Additionally, the British Dental Association has said that 9 million children missed out on dental checks during the first year of the pandemic.[9] Given tooth decay remains the most common reason for children aged 5-9 to be hospitalised[10], this is very concerning. This is also a disease that is nearly always preventable.

 

1.5               Vulnerable children and safeguarding

Schools also perform a critical role in safeguarding surveillance and referral where appropriate. Again, the closure of schools to the majority of pupils for significant periods of 2020 and 2021 has meant children may not be getting the help they need. Whilst schools remained open to vulnerable children, take up remained low with the Department of Education’s own data saying only 15% of vulnerable children eligible to attend school in lockdown did so. There has been a 6% reduction in the number of children on a child protection plan in 2020-21 compared to 2019-2020.[11] In addition, serious incident notifications relating to children’s safeguarding were up nearly 20% in 2020/21 compared to 2019/20. [12]

 

 

2. Child health workforce and the backlog

2.1               State of the child health workforce pre-COVID

The child health workforce across the UK is suffering from the same planning problems, underfunding and staffing issues as the rest of the health workforce. Our latest census showed we need another 850 Working Time Equivalent (WTE) consultants to meet demand in child health services.[13] In 2018, an NHS Improvement report identified workforce problems as the main contributor to poor ratings of paediatric services by the Care Quality Commission (CQC).

 

2.2              Redeployment during COVID-19

In the second peak of COVID-19 in January 2021, 13% of services reported paediatric consultants were redeployed to adult services.[14] In the first wave of the pandemic, 22% of the child health workforce on the acute rota were redeployed to adult services – largely PICU nurses to adult ICU.[15] 46% and 11% of services reported community child health trainees were redeployed in the first and second waves of the pandemic respectively.[16] This is particularly significant given the role of community paediatricians in identifying safeguarding issues.

 

2.3              Impact of COVID-19 on paediatric training

A proportion of paediatric trainees have been redeployed to adult services at different points of the pandemic. In the second peak of COVID-19, 30% of services had to redeploy trainees to adult services.[17] This has implications for the care available to children and young people but also for the education of those doctors who are training to become paediatricians. For example, the lack of bronchiolitis in 2019/20 meant that clinics were cancelled or reduced, disrupting usual training. More generally, paediatric surgery trainees and paediatric anaesthetic trainees have not been getting much clinical exposure over the previous eighteen months.

 

2.4              Impact of pandemic on the paediatric workforce

In addition to longstanding workforce pressures, the paediatric workforce has been under a huge amount of pressure because of the pandemic with over 15% of services reporting absence due to stress and 45% of clinical leads reporting concerns about future absences.[18] As across the whole NHS workforce, staff need to be supported to recover from stress and burnout. We also know from members that there were issues with additional staff absences due to self-isolation after being contacted by NHS Test and Trace, before guidance changed on 19th July 2021. Similarly, some staff have not been undertaking clinical work due to personal vulnerability – such as pregnancy – which has further increased the workload of the remaining workforce. 

 

 

3. Pressures on paediatric emergency departments

3.1               Increased demand

One of the places we have seen the most increased demand as we have moved out of the spring 2021 COVID-19 wave of the pandemic, has been in paediatric emergency departments. Whilst some of this has been due to CYP unable to access services for poor mental health until they’re in crisis, and some is due to the usual reasons we see CYP in emergency departments such as accidents, there has been a surge in respiratory syncytial virus (RSV) and other respiratory conditions

 

3.2               Unseasonal surge in respiratory viruses

RSV is usually seasonally associated with winter but given the various restrictions and infection control measures in place across the country towards the end of 2020 as a result of the pandemic[19], we are seeing higher rates than usual for the summer months. Whilst these illnesses will not be serious for the majority of children, some children under 2, especially those born prematurely or with a heart condition, can suffer more serious consequences from infections such as bronchiolitis.[20] On average, 3% of infants will be admitted to hospital with bronchiolitis and 1% if these will sadly die.[21] NHS England have been planning for the potential rise in paediatric respiratory infections in April 2021, with paediatric units bringing forward their usual winter planning. RCPCH updated its guidance on bronchiolitis as a result of the surge. In June, a rapid policy statement was published that extends the eligibility criteria for passive immunisation with palivizumab to a further group of at-risk infants. The timing of dosing has also been updated to reflect the unusual seasonal presentation.[22]

 

3.3               Guidance for parents and carers

Whilst some children with RSV and other infections do need hospital care, for many CYP, this is not the case. In June, our members who work in emergency departments told us that they were seeing unprecedented demand, from parents with small children with mild fever who were not in need of emergency care.[23] As a result, RCPCH, along with the Royal College of Emergency Medicine (RCEM) and the Royal College of General Practice (RCGP) issued advice for parents and carers concerned about fever in their child. RCPCH and other similar organisations have a role and responsibility to issue such advice, particularly as the NHS works to address the elective backlog caused by the pandemic, to minimise any unnecessary additional pressures.

 

 

4. Addressing the backlog

4.1               Future concerns

As we move through the coming months, there will be a number of complex, competing demands for paediatric capacity. Increases in emergency presentations with both RSV and mental health crisis are putting significant pressure on beds, and paediatricians may find themselves having to make very hard decisions about who is admitted. If this continues, it will increase the elective backlog as more non-urgent procedures and treatments have to be further delayed to accommodate.

 

4.2               Financial investment

Paediatric services can simply not address the backlog caused by the pandemic in all its complexity without a long-term, sustainable and multi-year financial settlement for the NHS. Without it, it is impossible for them to plan how the backlog will be addressed and how to prioritise.[24] CAMHS, local public health services and Local Authorities all urgently need increased investment and sustainable, long-term funding, in order to prevent further demand on paediatric services in secondary care settings.

 

4.3               Reforming services

The Health and Care Bill provides an opportunity to reform services and ensure they are optimised to address the backlog caused by the pandemic. Integrated Care Systems (ICS) provide a significant opportunity to improve CYP health outcomes, provided the opportunity is seized locally and nationally. In RCPCH’s recently published Paediatrics 2040 project, which sets out a vision for the future of paediatrics in the UK, increased integration was identified as a key requirement for future models of care.[25] The priorities in the medium term must be the integration of existing data systems, significantly improved integration across physical and mental health services and in care within local communities.[26] In the longer term, there needs to be more integration in paediatric training in terms of the training pathways in other specialties, and research integrated at all levels of paediatric care pathways in primary, secondary and tertiary care.[27]

 

4.4               Role of DHSC

In addition to ensuring Her Majesty’s Treasury provides a sustainable, multi-year settlement for the NHS, DHSC and its Arms-Length Bodies (ALBs) – particularly the new Office for Health Promotion – have a critical role to play in ensuring CYP health needs are prioritised.

 

4.5               Role of NHSE

NHSE has a critical role in prioritising the specifics of CYP recovery and advocating for the need for services to prioritise time-dependent surgery and treatment to ensure CYP don’t miss out on life-changing care. Clearing the backlogs caused by the pandemic for CYP is particularly dependent on a multidisciplinary effort across health services, and NHSE must show leadership across the CYP pathway, not just in particular parts of it. It is imperative that NHSE must keep the focus across care delivery to tackle backlogs, and not just focus on elective care. Siloed working across children’s health services will not see the backlog addressed.

4.6                    Role of local systems

Local systems have a critical role to play in addressing the backlog, especially in areas where there are significant health inequalities and deprivation. ICS must know and understand the needs of their CYP population, and ensure they are prioritised. RCPCH have previously voiced concern that the health and wellbeing needs of CYP could fall through the cracks of ICS, given the number of partners and providers involved – including children’s social care, CAMHS, voluntary services, education and health services. This is why we are calling for a statutory clinical strategic CYP lead in every ICS to ensure this doesn’t happen. We agree with the NHS Confederation that ICS must prioritise CYP mental health.[28] It’s also critical that Local Authorities receive the long-term investment they need to support cross-sector services such as youth centres, children’s social care and children’s centres.

4.7               Positive lessons from the pandemic

During the first wave of the pandemic, RCPCH heard from members working on the frontline of child health services that parents may be reluctant to bring their children to health services in light of the current pandemic. We knew that attendances to emergency departments had greatly reduced.[29] In response to this, RCPCH launched a public information campaign to speak to parents to assure them that they must access health advice and attend hospitals if their child is unwell or injured.[30] RCPCH worked with NHSE to deal with increased demand for NHS 111. We contacted paediatricians who were shielding, had recently retired or had stepped down from frontline service, to ask them to provide cover for NHS 111 services in England, and provided expert paediatric clinical advice to call handlers. This example of effective problem-solving highlights the importance of working across organisations, with expert clinical input to tackle issues such as this. This model can be repeated as part of efforts to clear the backlog where scenarios arise that would benefit from this kind of joint approach. More generally services have benefitted from new ways of working with greater use of digital technology and remote access consultations.  These changes, as well as a wide range of other potential innovations and improvements, could become a spring board to genuine service improvement and redesign.

 

5. Post-COVID syndrome

5.1               What we know about children and post-COVID syndrome

As COVID-19 is a new virus, there is much about it that we still don’t understand. Post-COVID syndrome is an area where we are still building knowledge through research, and currently there is no case definition. The Children and Young People with Long Covid (CLoCK) study is the key research being undertaken into paediatric Post-COVID syndrome.[31] Led by Public Health England (PHE) in partnership with the Great Ormond Institute of Child Health, a preprint of the study shows around one in seven children experience symptoms 15 weeks after infection with COVID-19.[32] There are varying estimates of the number of CYP with post-COVID syndrome from 34,000[33] to 4.4% of children that have had COVID-19 infection.[34]

 

5.2               NHSE paediatric Long Covid hubs

In June 2021, NHSE announced it was setting up 15 specialist Long Covid services for CYP across England.[35] 

 

 

 

 

6. Calls to Government

This submission has set out that clearing the paediatric backlog caused by the pandemic is dependent on integration of child health services, and joined-up working between paediatric services, NHSE, local systems, CAMHS, Local Authorities and national government. To enable and maximize these efforts, UK Government must:

 

 

Sept 2021

 

 


[1] LCP, NHS waiting list tracker, 2021, available at: https://nhswaitlist.lcp.uk.com/

[2] NCB, Understanding the needs of disabled children with complex needs, 2017, available at: https://councilfordisabledchildren.org.uk/resources/all-resources/filter/inclusion-send/understanding-needs-disabled-children-complex-needs

[3] RCPCH, Reset, Restore, Recover: RCPCH Principles for Recovery, 2020, available at: https://www.rcpch.ac.uk/resources/reset-restore-recover-rcpch-principles-recovery.

[4] RCPCH, Impact of COVID-19 on child health services, 2021, available at: https://www.rcpch.ac.uk/resources/impact-covid-19-child-health-services-part-2-report

[5] RCPCH, Paediatricians warn parents to be alert to signs of eating disorders over the holidays, 2020, available at: https://www.rcpch.ac.uk/news-events/news/paediatricians-warn-parents-be-alert-signs-eating-disorders-over-holidays

[6] Ibid.

[7] NHS Digital, Mental Health of Children and Young People in England, 2020: Wave 1 follow up to the 2017 survey, 2020, available at: https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-of-children-and-young-people-in-england/2020-wave-1-follow-up

[8] The Guardian, UK child immunisation drop due to vaccination fatigue, advisers warn, 2021, available at: https://www.theguardian.com/society/2021/aug/24/uk-child-immunisation-drop-due-to-vaccination-fatigue-advisers-warn

[9] British Dental Association, Support needed as 9 million children miss out on care, 2021, available at: https://bda.org/news-centre/press-releases/Pages/Support-needed-as-9-million-children-miss-out-on-care.aspx

[10] Ibid.

[11] Department for Education, Vulnerable Children and Young People Survey, 2021, available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/995709/VCYP_Survey_Publication_Waves_1_-_24_June_2021.pdf

[12] Local Government Association, Serious child harm cases reported by councils rise by nearly a fifth, 2021, available at: https://www.local.gov.uk/about/news/serious-child-harm-cases-reported-councils-rise-nearly-fifth

[13] RCPCH, Workforce Census: UK Overview, 2019, available at: https://www.rcpch.ac.uk/resources/workforce-census-uk-overview-report-2019

[14] Ibid.

[15] RCPCH, Impact of COVID-19 on child health services between December 2020 and February 2021, 2021, available at: https://www.rcpch.ac.uk/resources/impact-covid-19-child-health-services-part-2-report#winter-weekly-alert-system-november-2020-to-february-2021

[16] Ibid.

[17] RCPCH, Impact of COVID-19 on child health services, 2021, available at: https://www.rcpch.ac.uk/resources/impact-covid-19-child-health-services-part-2-report

[18] Ibid.

[19] Department for Health and Social Care, Health chiefs issue warning as childhood respiratory infections rise ahead of winter, 2021, available from:  https://www.gov.uk/government/news/health-chiefs-issue-warning-as-childhood-respiratory-infections-rise-ahead-of-winter

[20] Ibid.

[21] National Institute for Care Excellence (NICE), Bronchiolitis in children: guidance and management, 2021, available at: https://www.nice.org.uk/guidance/ng9

[22] RCPCH, Palivizumab passive immunisation against respiratory syncytial virus (RSV) in at risk pre-term infants, 2021, available at: https://www.rcpch.ac.uk/news-events/news/palivizumab-passive-immunisation-against-rsv-pre-term-infants

[23] RCPCH, A&Es see dramatic rise in number of young children – but it’s not COVID, 2021, available at: https://www.rcpch.ac.uk/news-events/news/aes-see-dramatic-rise-number-young-children-its-not-covid

[24] NHS Confederation, Spending Review provides opportunity to invest in the NHS of the future, 2021, available at: https://www.nhsconfed.org/articles/spending-review-opportunity-invest-nhs-future

[25] RCPCH, Paediatrics 2040: Models of Care – Summary, 2021, available at: https://paediatrics2040.rcpch.ac.uk/our-evidence/models-of-care/summary/

[26] Ibid.

[27] Ibid.

[28] NHS Confederation, Reaching the tipping point: children and young people’s mental health, 2021, available at: https://www.nhsconfed.org/publications/reaching-tipping-point

[29] Shanmugavadivel D, Liu JF, Gilhooley C, Elsaadany L, Wood D. Changing patterns of emergency paediatric presentations during the first wave of COVID-19: learning for the second wave from a UK tertiary emergency department, BMJ Paediatric Open. 2021;5(1):e000967, 2021, available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7969761/ 

[30] RCPCH, statement on delayed presentations, 2020, available at: https://www.rcpch.ac.uk/newsevents/news/covid-19-statement-delayed-presentations

[31] Public Health England, Children and Young People with Long Covid (CLoCK) study, 2021, Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/977177/Children_and_young_people_with_Long_Covid__CLoCK_.pdf

[32] Wise J, Long covid: One in seven children may still have symptoms 15 weeks after infection, BMJ 2021;374:n2157, available at: https://www.bmj.com/content/374/bmj.n2157

[33] Office for National Statistics (ONS), Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 July 2021, 2021, available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1july2021

[34] RCPCH, RCPCH responds to new study on long lasting symptoms in children with COVID-19, 2021, available at: https://www.rcpch.ac.uk/news-events/news/rcpch-responds-new-study-long-lasting-symptoms-children-covid-19

[35] NHSE, NHS sets up specialist young people’s services in £100 million long COVID care expansion,2021, available at: https://www.england.nhs.uk/2021/06/nhs-sets-up-specialist-young-peoples-services-in-100-million-long-covid-care-expansion/