Long Covid Kids Health Team Introductions
- Long Covid Kids
- Aug 25, 2022
- 6 min read
Updated: Sep 30, 2023
This is a blog to tell you a little about the Long Covid Kids Health Team; our achievements and our plans for the future. We welcome new volunteers and new ideas, so if you are interested in helping please do get in touch!
Who Are We?
Kirsty Stanley is an Occupational Therapist. She leads the Health Team which is actively seeking new volunteers. Some of the students who have been on placement with the team have remained with us on a voluntary basis.
Specific Challenges for the Health Team
The World Health Organisation's definition of health is that it is “not merely the absence of disease or infirmity” but “a state of complete physical, mental and social wellbeing”. Focusing on the health of children and young people with Long Covid is complex and consists of many factors, including how children and young people interact with family, friends, healthcare and education, and how they engage with what Organisations require them to do.
The overlap and similarities between Long Covid and other already recognised health conditions such as ME/CFS, PoTS, MCAS and PANS also needs further unpicking and we can both learn from and inform healthcare and research into these conditions. Long Covid is an umbrella term and we use it knowing that each child or young person will present with their own constellation of symptoms. However, the more we can understand their collective experience, biology and pathology the better equipped the world will be to devise and trial effective pharmacological, medical and rehabilitative treatments.
As with any health condition, living with Long Covid is something that only those with lived experience truly understand. Tried and tested treatments can result in a different experience for each child. As the first international charity for children, young people and their families, Long Covid Kids aims to be a voice for those who have not yet been heard in order to share that lived experience with those who provide their care, making sure that children and young people are at the heart of every service developed for them.
The risk with a new condition is for healthcare practitioners to be paralysed by a lack of robust evidence of the effectiveness of treatments. But we need to balance the risk of doing nothing or trialling something with the harms and benefits of these approaches. People have always sought treatments independently so we want to support families to do their own risk assessments whilst encouraging the international healthcare community to be brave, and also humble in their own lack of knowledge. As healthcare providers we must remember that each child and family are the expert in their own lives and circumstances and working collaboratively to address challenges is likely to lead to the best outcome for that child or young person.
We are aware that people's experiences of healthcare services have been variable - with some outstanding support being provided and some which have left those accessing it feeling frustrated. We want to highlight the outstanding examples in order to improve all services.
What Have We Achieved?
Working with the wider team we have developed our key resources Cautious Tortoise and Pacing Penguins - both as posters and accompanying blog posts. These resources aim to guide families through initial SARS-CoV-2 infection with a focus on adequate rest, recuperation and pacing as a well-recognised management strategy used by those with energy-limiting chronic conditions. Many resources around this have been focused on adults and we wanted to develop a memorable way to introduce the concept to children and young people. However, we recognise that living a paced life is complex and there is often a need for individualised support to put this into practice so our work in exploring this area will continue.
Production of our support guide was the biggest piece of work to date. If you are reading this blog and haven’t yet taken a look at it please do. In it we’ve answered lots of commonly asked questions and shared tips on everything from setting realistic goals, to identifying what recovery means and tips on how to get the most from healthcare interactions. There are even template letters to use with GPs and schools.
We have had three Occupational Therapy students from the University of Northampton on placement with Long Covid Kids, and the students have developed and run virtual activity-based groups, worked one-to-one with children, started a TikTok account, contributed to the development of the National Institute of Clinical Excellence guidelines and also, the Royal College of Occupational Therapy Quick Guide to Long Covid in children and adults.
I myself am an active member of the joint Royal College of Occupational Therapy and Chartered Society of Physiotherapy Let’s Talk Long Covid special interest network.
Finally, I have also been providing some one-to-one support to families that are having particular challenges with education or health services. However, as I am living with Long Covid myself my resource is finite and the need currently outstrips the resource.
What Are We Working On?
The HealthCare Experiences survey co-produced with Long Covid Support will launch in early September and will run until the end of October. This is for people to share their experiences of healthcare interactions. This will be analysed on an ongoing basis and anonymised findings will be shared with the NHS and other providers to inform service development and research.
Co-production of services with young people is a core driver for Long Covid Kids and our Youth Advisory Panel is open for new members to join and have their say - email otsupport@longcovidkids.org if your child/young person would like to be involved in our monthly zoom meetings. In our previous sessions, we discussed the Sunflower Lanyard scheme and reviewed upcoming projects and research opportunities. We are taking a break in August, returning to meeting monthly on the last Saturday of the month from September. For children who feel unable to attend the zoom meeting, we are exploring other options for them to feedback by completing online polls and surveys.
Long Covid Kids CEO Sammie Mcfarland and I will be part of a panel discussion on Long Covid in children and young people at the Long Covid Physio International Forum which runs 9th and 10th September 2022.
What Are Our Plans Going Forward?
One of the first things we need to do after the summer break is to explore sources of funding to allow us to expand the support we can give to families who are struggling to access services elsewhere.
Along with the Education Lead and wider team, we will be developing training for education and health professionals that centers the lived experience. We will be working collaboratively with the Youth Advisory Panel to develop resources which give the loudest voice within this to those experiencing the condition. By providing this training we will aim to both secure funding for the charity and disseminate the needs and challenges faced by this group to those who are in a position to influence and provide services to benefit them. I would like to connect with healthcare professionals in the NHS paediatric hubs or with those regularly seeing children and young people with Long Covid in their practice and I am happy to be contacted if you are brand new to working with this group and are not sure where to start. I am away for August but will be back in September so do email me and I will reply when I’m back - kstanley@longcovidkids.org.
I want to expand the health team to include people from other professions who share an interest in Long Covid in children and young people - if that is you - do email me at kstanley@longcovidkids.org and I will respond in September. I am one of the founding members of Occupational Therapy for Long Covid and we will continue to connect with other professional groups including Long Covid Nurses and Midwives and Long Covid Physio.
I am pleased to have taken on an associate lecturer role at the University of Northampton and as such will continue to take Occupational Therapy students on placements with Long Covid Kids, to build on the projects that have already been completed such as the Occupational Therapy TikTok account, activity groups and more. I would also like to lead research into the Occupational Therapy role as well as continue to support co-production with the young people and families we serve.
Above all, we want to support children and young people living with Long Covid to achieve mental, physical and social well-being. This requires unpicking what that means for each child alongside removing the societal barriers that prevent them from achieving that. It also means working collaboratively with health, education, government, with and for children and young people, their friends and family.
Kirsty Stanley
Occupational Therapist and Health Team Lead
21st August 2022
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 the recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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.
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
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