Being referred to a Long Covid Clinic seemed like the Holy Grail for Rosie, 16. This is the story of one girl's battle to get treatment.
Northern Ireland's Post-Covid Syndrome Service was launched on 1 November 2021 with a big splash in the press. After being referred by the GP, it seemed like all would be smooth: a one-stop-shop to assess, refer onwards and aid recovery. But, like pretty much everything else on Rosie's Long Covid journey, it turned out to be an exercise in disappointment.
Long Covid Clinics Launched: Hope Lies Ahead
October 2021 and the new Long Covid clinics are announced. Quick! Get referred, be at the front of the queue! At this point in time we have had little help or support from anywhere.
"Hi there, my daughter was referred to the new Long Covid clinic a few weeks ago, but we haven't heard anything more". The silence on the other end of the phone is deafening.
A pause, a sharp intake of breath...What now?
"We don't have any clinicians for them yet..."
Hope Begins To Falter
By November 2021, clinicians have finally been appointed. The service is up and running but we are told that "the service has only been commissioned for over 18s."
This is of little use to a 16-year old who wants help to get back to school; who wants to see her friends; a teenager who longs to live her life, not just exist in a miserable, painful half-life...
Time to Fight
What does a parent do in this situation? The GP believed that The Clinic was the best place for Rosie. I'm not a doctor. How do I manage my daughter's symptoms at home: her declining mental health due to lack of treatment; her pain? Her lack of hope?
We felt we must highlight this problem. There will be other children like Rosie, suffering. But how does a child navigate this system? How does she make a noise, get people to listen?
Write letters, I advised. You can't complain about things not working unless you explain to people what the problems are.
But this is not easy. Because Rosie has Long Covid. And Long Covid does not help you write letters. So we did it as a team. "You tell me what you want to say, I'll type"
45 minutes later...
After a lot of tears, anguish and three-quarters of an hour we have written four sentences. Rosie reaches for the words through the fog. But they do not come. Three months earlier, Rosie got 9 A and an A* star grade at GCSEs. Now she can't form a simple sentence.
This is hard work. Really hard work...
Skip forward a week or two
In a moment of clarity one day, the fog has temporarily cleared and the letter is written and sent. Rosie laid bare her soul to the Health and Education Committees at Stormont.
"There are a lot of physical symptoms. My mental health is also bad. I cry a lot. I just want to get better. Nothing the doctors do helps..."
BBC Northern Ireland hears about the letter and asks for an interview. Rosie bravely agrees, but while reading those words she breaks down and I had to finish reading the letter for her.
(click on the image for video)
As if by magic, a clinic appears
While Rosie is advocating for herself and for others on TV, a text arrives. The Health and Social Care Board has extended the clinics to 16-18 years old teenagers. A victory! A scared, sick and sad child has addressed the system directly. And she has made a difference. Scared, sick and sad is not fearmongering. It's how my daughter feels in a world that no longer makes sense.
Assessment by zoom
And so the first appointment arrives. By zoom, Rosie manages to complete half an assessment with a clinician before her migraine gets so bad she feels sick. She is dizzy. She needs to rest. "No problem. We'll finish next week..."
So, how was it?
Discharged!
After the assessment is finished, Rosie is sent an activity diary to complete and some booklets to read. But she cannot read anymore. Because she has Long Covid and it has affected how her brain works.
She is told, "I'll see you in two weeks and then you'll be discharged. Try to go for a walk every other day."
This article in the BMJ explains why exercise can be dangerous for children with Rosie's symptoms.
Leaving this aside, Rosie is becoming more and more vulnerable.
"Imagine if a midwife booked a pregnant woman in,
then saw her once or twice to ask a few questions.
And then left her at eight weeks pregnant to manage the rest of the pregnancy and birth herself, with no more support.
That's what this feels like.
The health system has abandoned my daughter when she needs it most"
Rosie's Dad
Lead Representative for Northern Ireland
30th March 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 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