Interview with Helen Goss, COO and Scotland Lead of Charity Long Covid Kids on how Long Covid is slowly but surely breaking Scotland’s next generation…
Credit: Long Covid Kids
Covid is often spoken about in the past tense, the blight and tragedy of a generation, discriminating against no one, spanning all age groups, a frightening but soon to be distant memory, but the truth is simple – Covid is here to stay and the real price of Covid, the bigger picture, is yet to fully unfold mainly due the real and persistent affliction of Long Covid which is especially damming for children and young people, because as a largely asymptomatic group, they are being let down by the whole system.
Helen Goss, COO and Scotland Lead of Charity Long Covid Kids confirms the healthcare situation for children and young people with Long Covid is hugely frustrating: “Children are continuing to develop Long Covid – and that is not stopping any time soon. The public health messaging about this is poor, so people are not aware of how severe Long Covid can be.”
Earlier this year, Helen became Long Covid Kids core participant in the Scottish Covid Inquiry, where she hopes to uncover the rationale behind the poor pandemic response in Scotland, and ensure that children and young people living with Long Covid are no longer ignored and dismissed. Long Covid Kids believe that Long Covid just isn’t being taken seriously and those afflicted are not getting the support they desperately need. Children and young people’s voices just aren’t being heard even though Long Covid Kids has valuable experience and research to share.
Currently supporting over 11,000 families, the charity’s vision is to achieve recognition, support, and recovery for Long Covid and related illnesses in children and young people.
Helen Goss knows only too well how Long Covid can decimate people’s lives from her own personal experience. Both Helen and her 10-year-old daughter, Anna, live with Long Covid. Over the past three and a half years, Anna has been either bedridden, housebound or confined to a wheelchair due to Long Covid. Anna describes her life as “running on 5% energy levels every day”. She is unable to attend school, unable to enjoy her hobbies, unable to socialise, play or learn, and has been so ill, at one stage Helen feared she would lose her.
Credit: Helen and Anna Goss
The reality of children and young people with Long Covid just isn’t in the media or healthcare spotlight which exasperates Helen: “If parents knew how severe Long Covid can be, and how it can affect their child’s quality of life, I think there would be a riot before breakfast. I feel the reality is being downplayed because it is a horrifying situation to be in. Covid is still not being counted and coded in NHS databases properly. We don’t have the numbers and therefore Long Covid appears not to be a big problem, it is easy to hide, and it is being hidden.”
Long Covid Kids works alongside healthcare experts, but Helen claims the system for diagnosis and referral simply isn’t working: “There are very few Long Covid experts in the UK, even fewer specialising in children with Long Covid. Children often experience asymptomatic COVID19 infection and may not have had a test or even know they had Covid at all. We have families telling us all the time that when they go to the NHS, they have no idea of what to do with them and children are often dismissed and discahrged with no diagnosis, no treatment and no support. Many families are forced to seek private health care to obtain treatment . They feel they have no choice. Families are also at the mercy of their postcode – if you are lucky enough to have a primary care provider that has knowledge about Long Covid, minimal support is there; but most children in Scotland are not getting a diagnosis at all. It’s very difficult to obtain basic diagnostic testing, almost impossible to obtain treatments and a diagnosis is like gold dust. You have to be persistent and knowledgeable and really push hard for even the most basic care.”
Helen and Anna’s initial bought of Covid was early in the pandemic, and as such, Anna was one of the first children to suffer with Long Covid. Helen reached out to try and find others in the same situation, which is when she met Sammie McFarland, CEO of the charity Long Covid Kids.
Sammie was forming the charity Long Covid Kids out of necessity and Helen quickly joined the team. Originally based in the UK, t charity now also operates in the USA, Canada and New Zealand, among others.
The signifcant part Helen has played, fighting for all families to have access to paediatric Long Covid care and support, was recognised by Scotland’s First Minister, Humza Yousaf,during the Scottish Parliamentary Long Covid Inquiry in 2023. He said: “Helen has overcome adversity and been a lone wolf fighting for children in Scotland.”
Helen explains: “The whole reason why Long Covid Kids exists is because our children were some of the first affected, we all found each other. We didn’t know what was happening, but we knew something was very, very wrong. The charity has organically grown from there and become Long Covid Kids as we are today.”
“At Long Covid Kids we support families through services and groups, online meet ups as well as educational meet ups for the children. We are involved in paediatric research but there are funding and other barriers for this research, which we try to break down.”
Long Covid Kids has been involved with, and co-produced research into the effects of Long Covid and, in collaboration with Derby University, they published the first ever survey of the educational repercussions children and young people are suffering due to Long Covid1.
This survey gained responses from 307 children and young people with Long Covid and highlighted their change in educational status, concluding that only 45.9% of children and young people living with Long Covid are currently in full time education, compared to 95.7% before they had Covid. Further findings show that a child with Long Covid will lose an average of 20.6 learning hours per week – and only 7.4% of responders confirmed attending their educational facility for the full 5 days of the school week.
The survey goes further to say that fatigue and PESE (Post-exertional symptom exacerbation) are two of the most common symptoms that continue to impact engagement with education and 69.2% of respondents report that their education status has been affected in some way because of a COVID-19 infection1.
These facts show the obvious knock-on effect of Long Covid, so many children are out of the education system, which is failing them. Helen continues: “My own daughter is completely bed bound at the moment and has not been in school since 2020. There are degrees of severity with Long Covid; there are children going to school part time, or just as much as they physically can. Their quality of life is extremely low.”
Solving this problem doesn’t just come down to healthcare. Prevention is a key factor and Long Covid Kids advocate for cleaner air in schools to reduce transmission of all pathogens. Helen is passionate about this option: “If the Government decided they wanted to preserve children’s health they could clean the air in schools, there needs to be a new determined focus on ventilation and air filtration, the CLASSACT research shows the evidence is there . Cleaning the air reduces transmission of pathogens which will improve absence rates, preserve health of children and school staff alike and gain better health and learning outcomes. It just needs the drive and will to do it, and at the moment the Government don’t have that ambition and are failing Scotland’s children.”
Indications point to children and young people with Long Covid being seriously let down, by the medical profession, education sector and Government itself due to lack of funds, lack of knowledge and lack of expertise. There also seems to be a lack of interest from the public, Long Covid diagnosis is often overlooked due to lack of training , and unsurprisingly, people don’t want to be reminded of Covid and its negative side effects.
Long Covid for children and young people is the elephant in the room but it is real and widespread. According to Action Medical Research, some estimates indicate up to one in 50 children infected with SARS-CoV-2 develop long Covid, while other studies suggest it could be as many as one in seven2.
Helen continued: “Children often present at the GP with neuropsychiatric problems, persistent headaches, unrelenting exhaustion, , feeling constantly unwell , and they can be dismissed or referred onto the CAMHS pathway (children and adolescent mental health service) who are slammed with new referrals. “I would bet that a big proportion of the children being referred to CAMHS will have Long Covid and not a psychiatric condition.” Helen explains: “With Long Covid you can have POTS (Postural Tachycardia Syndrome) a condition that increases heart rates after sitting or standing up and this can be confused or diagnosed as anxiety, especially in children.Treatment options to manage sympotoms are availabl but seldom perscribed on the NHS” We also see a significant number of children developing PANS (Paediatric Acute-Onset Neuropsychiatric Syndrome) which is an immune-mediated inflammatory brain condition often mistaken for a psychiatric problem; treatment with antibiotics and antiinflammatory medications can resolve symptoms. Talking therapy and CBT via CAMHS will not resolve a condition with an underlying and treatable pathophysiology. Young people are being sent down the incorrect treatment and support pathways which can lead to increased harm and distress for young person and their family.
Alongside the Long Covid Kids team, Helen produced a free, digital, award-winning resource called ‘Shining A Light on Long Covid In Children And Young People,’ raising awareness to improve the lives of families, children and young people living with Long Covid. Long Covid Kids has a voice which is unique and knowledgeable, but they shouldn’t have to shout. Diagnosis, treatment and support for children and young people with Long Covid needs to be prioritised, for the sake of those suffering now and for all those who will suffer in the future.
Long Covid Kids urge all those children and young people affected by Long Covid to find out about the support open to them. Support information can be found on their website Long Covid Kids.
——-
1. Long Covid Kids Long Covid in Children and Young People (CYP) Education Experiences and Attendance Survey in collaboration with Derby University gathered a total of Three hundred and seven responses, collected between February and March 2023, from across England, Scotland, Wales, Northern Ireland and Ireland.
2. Taken from Long COVID: understanding how COVID-19 affects the brains of children with persistent symptoms | Action Medical Research
3. Reference: What parents need to know about long COVID in children | UNICEF Parenting
