Long Covid in Children and Young People Healthcare Experiences Survey in Collaboration with University of Derby - Summary of Preliminary Findings by Long Covid Kids. Three hundred and ninety-seven responses were collected over eight weeks from 27th November 2022 to 18th January 2023.
Overview of article
Paediatric Long Covid Clinics - or hubs as they are more often known - were commissioned in June 2021.
15 clinics opened across England
Scotland and Wales opted to rely on existing healthcare provision
Northern Ireland clinics launched in November 2021
We received mixed reports of healthcare experiences from Support Services members, seemingly more negative than positive. To better understand health experiences in more detail we launched our Healthcare Experiences Survey adapted from the Adult Long Covid Clinic Survey by Long Covid Support. We shared the survey within our support services and on social media.
This blog presents the preliminary findings from a report prepared by Dr Mark Faghy (University of Derby) with Sammie McFarland (CEO Long Covid Kids) and Kirsty Stanley (Health Team Long Covid Kids (Report dated 24th January 2023).
Contents
Survey Overview
The survey was developed by Long Covid Kids and their patient representatives and
aimed to increase the awareness of healthcare experiences of children and young
people living with Long Covid. Thanks go also to the research team at Long Covid Support who created the adult version of this survey, from which this survey was adapted.
Three hundred and ninety-seven responses were collected over eight weeks from
27th November 2022 to 18th January 2023.
Key Findings:
59% of children and young people highlight that subsequent infections with COVID-19 have added further symptoms/complications to their Long Covid.
Almost sixty per cent of children that completed the survey were treated by healthcare professionals which includes treatment at home, at least one visit to A&E and/or admission to a hospital.
Over half of CYP who received support from healthcare settings were very dissatisfied or dissatisfied with the level of care they received.
Predominant access to clinical investigations is routine assessments, with very few children or young people (<10%) being able to access more detailed tests. A further 5% of cases resulted in no tests/investigations being ordered.
72.8% highlighted their experience has not met their expectations with 51% of those using private healthcare or looking abroad for treatment options.
26% of children and young people are still awaiting a referral to an established Long Covid service.
For those referrals that have been made the average waiting time for this to occur is more than six months for 66.4% of CYP.
42% of those that have been referred to a Long Covid service are either unsatisfied or very unsatisfied with their experience.
Sample overview:
Mean survey response age was 13.3 ± 2.9 years (min: 4, median: 14 max:18).
72.9% of respondents (n=283) reported signs or symptoms post-infection with Sars- Cov-2 (COVID-19) for at least four or more weeks. The remaining 27.1% have not been formally diagnosed and are still waiting for a diagnosis.
Positive COVID-19 Lateral Flow Test, PCR test and/or anti-body test was reported by 92.4% of respondents. The remaining 7.6% tested negative or were unable to get a test.
First confirmed reports of infection date back to November 2019 and as recently as December 2022.
87% report that signs and symptoms of Long Covid were evident following their first infection.
The impact of repeat/subsequent infections worsened symptoms of Long Covid for 58.9% of the sample (n=260). 41.1% (n=137, report no subsequent infection).
Vaccination rates are 67.7% of the sample (n=224).
64.6% (n=159) reported no prior knowledge of physical impairments, health conditions or learning differences that impacted the ability to carry out day-to-day activities.
Healthcare Utilisation and Experiences:
57.2% of respondents received support from healthcare practitioners, whether at home (25.2%), visiting A&E (35.7%) or following admission to the hospital (16.7%).
53.1% reported that they were very dissatisfied or dissatisfied with the care that they received.
Forty-one different tests and procedures were reported as being undertaken by healthcare professionals.
72.8% of respondents report the level of care received fell below their expectations.
56.2% have been referred to a specialist Long Covid clinic but 14.1% were not able to be referred as there are no Long Covid clinics available in their area.
Of those 35.29% did not have access to a Long Covid clinic because they do not live in England and 15.3% highlighted that their doctor was not aware of a local Long Covid service in the area.
“Being discharged from the Long Covid team or not makes no difference. They have added nothing to our journey, and if anything, have been detrimental as put up further barriers to us accessing treatment. Thankfully our local paediatrician disregarded the watch and wait message. We are seeking additional support in spite of them and not because of them. Thankfully our local paediatrician and GP are happy to listen to my guidance, learn with me and consider treatment options. They are also willing to work alongside, and be advised by, private specialists.”
Long COVID Service Referrals
66.4% of children and young people with Long Covid had to wait more than six months for a referral to a Long Covid clinic and for 28.3% this was longer than three months.
49.7% have been seen face to face and a further 46.5% have been seen virtually as part of their referral.
11% of referrals have been accepted but no contact or appointment has been issued and a further 12.3% are still waiting for a referral to be accepted.
The average time for the first appointment following a referral to a Long Covid clinic is 3-6 months (63.9%) and 5.31% waited more than 12 months or are still waiting for their first appointment.
36.6% of survey respondents report having an average of 2-4 appointments at a Long Covid clinic, and 23.6% reported only having one appointment.
Twenty different specialities and clinical domains were listed as being involved in Long Covid referrals with an occupational therapist (53.6%), paediatrician (51.8%) and physiotherapist (46.4%) being the most reported.
Outcomes of these referrals were predominantly aimed at rehabilitation/physiotherapy advice given which includes breathing exercises 40.0% and 10.2% were given an exercise plan to follow.
Less than 10% were given a personalised symptom management plan.
41.8% of CYP received a follow-up appointment and a further 28.2% were given a second appointment alongside a referral to other clinics/specialists and 4.5% were discharged with no further referral or support.
Follow-up appointments typically occurred within three months (74.0%) for those that received them.
For those that were discharged, 92.3% were not happy and some were “disgusted” with this outcome.
“It appears they diagnose Long Covid, provide advice on how to live a disabled life, then leave you to get on with it”
The Usefulness of Long COVID Support
Only 4.7% report that they have seen a significant improvement in symptoms since their referral to an established Long COVID clinic.
A further 14.1% report seeing some improvement but not in all symptoms.
38.3% report that they have not seen any improvement since their referral with 8.4% reporting that they have gotten worse.
20.6% here report that they did not receive any meaningful advice or treatment.
43.0% report that they have been fairly dissatisfied (17.8%) or very dissatisfied (25.2%) with their experience of the Long Covid service.
Long COVID Outcomes
57.63% of CYP report that they are feeling no better (31.7%) or have seen marginal improvement but are still experiencing relapses (25.9%).
When asked to use three words to describe their Long Covid healthcare experience,
CYP provided the following responses:
Education:
49.2% report that their persisting Long Covid issues have and continue to impact their education and are unable to complete standard full-time education.
A further 22.7% have had to leave full-time education.
Our Education and Attendance survey is underway, with results due in early spring.
Care Needs:
91.8% of the sample reported that before infection with COVID-19 and their subsequent Long Covid, they had no care needs.
This has now changed to 40.1% needing a lot of care and 32.6% needing a small amount of care.
“The Long Covid service did not provide any support/advice that LCK had not already provided. The most recent visit was a check-in and provided a morale boost because she is significantly better 15 months since they first saw her. That’s about all.”
What Next?
At Long Covid Kids we recognise the immense demand that the National Health Service has been, and continues to be under, however our survey demonstrates a clear disconnect between what children and families expect from healthcare services and their experiences of receiving these services.
As a charity representing this population, who are at the forefront of co-producing paediatric Long Covid research, and with a reputation for providing quality early intervention guidance (as highlighted from the quote above) we wish to open up a constructive dialogue with the paediatric hubs in order to share the voices of children, young people and their families, and to connect hubs in order to share best practice (such as that noted in the quote below). We plan to contact each hub and offer them an opportunity to discuss the over all findings, and receive specific feedback on their hub. We are pleased to have started this process.
Our CEO will share the findings with ministers, stakeholders and the share them with members of the NHS Long Covid Task Force.
“The Long Covid Service has changed everything for us. OT and physio have been incredibly helpful, it feels we have a plan and the knowledge they have seemed exceptional.”
Clearly seeking private healthcare support is likely to be unsustainable for the majority and this will increase inequity amongst different populations. By sharing what children and families have found helpful and not so helpful, and through championing co-production of services, Long Covid Kids hopes to support NHS teams in seeking additional funding from commissioners in order to provide world leading paediatric services specialising in supporting children and young people with Long Covid.
As Sammie Mcfarland, CEO of Long Covid Kids said in a recent address to Westminster Health Forum:
“One thing that is very clear is that we need to ensure that the rhetoric of ‘we still have no cure for Long Covid’ does not become synonymous with offering no treatment.
As clinics have become more established it is clear to see that in many cases families feel more validated than earlier on in the pandemic which is welcome progress.
However, validation is not treatment.”
The current wait times for referral, and to be seen by these clinics, appears to be leaving children and families at the point of desperation with the worst affected unable to leave bed let alone attend school.
The increase in care needs that children and young people with Long Covid have is also likely to disproportionately impact on women and may additionally be contributing to the proportion of adults that are currently ‘economically inactive’. It is clear that the need to treat Long Covid is vital for the whole of society, and not just for the children, young people and families it directly affects.
The survey remains open for people to share their ongoing experiences and we are due to launch a follow up survey to further explore the impact of Long Covid on children’s education and discover how schools have managed to support access to education and learning. We anticipate that the challenges in accessing healthcare support will no doubt have an impact on what support schools are able to provide. In the meantime we urge all education providers to access our Support Guide, section 5 of which focuses on schools and education and what adjustments can be made to support children and young people with Long Covid.
Recommended Reading
Long Covid Kids and colleagues at Long Covid Support, Long Covid Physio and Occupational Therapy for Long Covid have been involved in developing the following guidance documents that we recommend that any healthcare professional working with people with Long Covid should make themselves familiar with:
Additionally, for a proportion of those experiencing Post Exertional Symptom Exacerbation and fatigue/extreme exhaustion the following National Institute for Health and Care Excellence guidance on ME/CFS should also be considered:
Blog Prepared by Kirsty Stanley - LCK Health Lead
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery, has already received recognition from the NHS and the Centre for Disease Control in the USA, and is a recommended resource in the NICE Long Covid guidelines.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people
Support Our Work
While children are living with life-changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
