When Engagement Fails: Why Long Covid Charities Resigned from the National Services Scotland Long Covid Network.
- Long Covid Kids
- Aug 5
- 5 min read
After 3+ years of dedicated involvement, Long Covid Kids Scotland and Long Covid Scotland have made the difficult decision to formally resign from the NSS Long Covid Strategic Network’s Lived Experience Group and Children and Young People (CYP) Working Group.
This decision follows extensive efforts to contribute meaningful input - time, energy, lived experience, research, and direct feedback from families - that, regrettably, have not resulted in tangible outcomes or sustained progress.
This decision was not taken lightly. However, continuing to be part of a system that fails to deliver on its promises and leaves children and families in crisis without the care they desperately need does not align with our mission.
Why We Joined
Long Covid Kids Scotland and Long Covid Scotland joined the Strategic Network to ensure that the voices of adults, children and families affected by Long Covid were not only heard, but embedded in decision-making. We hoped to help shape policy and services that were inclusive, transparent, and patient-centred.
We believed in co-production.
We believed in the promise of the “Once for Scotland” approach.
What we found was a deeply flawed structure that increasingly side-lined lived experience, blocked access to information, and functioned more as a talking shop of tokenistic engagement than a delivery mechanism.
Challenges We Faced
The network’s structure and restrictive practices made meaningful engagement almost impossible. Key decisions were made without transparency. Representatives were reduced to passive observers rather than collaborators. Feedback was routinely left unacknowledged, unassigned, or deleted from risk logs with no explanation.
One telling example is the flawed national POTS pathway - developed over years and promoted as a flagship project - only to be abruptly retracted post-launch due to critical issues that could have been avoided through better oversight and lived experience engagement.
Even basic asks, such as circulating letters to Health Boards, issuing newsletters, or publishing reports, were stalled or blocked.
Essential information, including meeting minutes, updates, and presentations, was repeatedly withheld from lived experience members. The wider Long Covid community, who have a right to understand how decisions are being made, were left in the dark.
And all the while, time passed. Services struggled to open and then closed. Waiting lists grew. And the majority of children were left with nothing.
The Impact on Our Team
Participating in the Network has taken a significant toll on our team, many of whom are Long Covid patients themselves - patients and parents juggling advocacy with full-time caring, illness, and sheer exhaustion.
Despite our persistence and extensive input, we’ve seen little to no progress that benefits the adults, children and families both charities represent. Instead, the burden of participating in a broken system became a source of harm in itself.
A £4.5m Scandal - and £10m Missing In Action
In December 2024, the Scottish Government announced £4.5 million in non-recurring funding for Long Covid, ME and fatigue-related services. Seven months later, not a single pound has reached patients. No allocations. No updates. No explanation.
This fund was supposed to be a lifeline. Instead, it has become a symbol of inaction and broken trust.
Some Health Boards have now decommissioned adult Long Covid services entirely, with waiting lists that stretch beyond service termination dates. Others are on the brink of collapse. Only 3 health boards currently offer any form of operational pathway for children and young people.
And this isn’t the first time. In 2022, the Strategic Network was launched with £10 million of funding - money that was supposed to support coordinated adult and paediatric Long Covid services across Scotland.
To this day, it remains unclear:
Where that money was spent (if at all),
What outcomes it delivered,
Or who is ensuring oversight and accountability for those funds.
The lack of transparency surrounding both funding streams raises serious concerns about governance, delivery, and whether Scotland’s Long Covid population will ever see the support they were promised.
This is a public health emergency being quietly ignored.
Why We Are Stepping Away
We have reached a point where continuing to sit at the table would mean endorsing a system that has failed, and continues to fail, the very people it was created to support.
Performative engagement cannot be a substitute for delivery. Lived experience cannot be used as a tick-box or shield.
We believe our time, energy, and expertise are better spent in spaces that value transparency, inclusion, and real patient-centred outcomes.
Moving Forward
Our commitment has not changed. Long Covid Kids Scotland and Long Covid Scotland will continue to advocate fiercely for adults, children and families across Scotland and the UK.
We will push for:
The immediate release of the £4.5 million fund.
A national plan for paediatric Long Covid care.
Public awareness campaigns to reduce stigma and misinformation.
Independent oversight to investigate this Network’s failures.
Inclusion of the voices that matter most.
You can read our full resignation letter here to understand more about our decision.
What You Can Do
If you’re reading this and feel heartbroken, frustrated, or furious - you’re not alone.
Please help us by:
Writing to your MSP. Ask where the money is. Ask why children are still waiting.
Sharing this post. Silence benefits only the status quo.
Standing with us. These children haven’t given up. Neither will we.
Thank you, always, for your continued support. We may have stepped away from the table but we’re not stepping back, we're stepping forward - with integrity and purpose.
Find out about our visit to the Scottish Parliament on 28th June 2022.
Families in the Scottish Long Covid Kids Support Services met Humza Yousaf MSP, Dame Jackie Baillie MSP and Alex Cole-Hamilton MSP outside the Scottish Parliament to deliver the LCK Support Guide, hand written letters from the children, and to ask the Scottish Government to help them. Read more...
Find out about our visit to No 10 Downing Street on 1st April 2022.
BBC - Long Covid: Children affected take fight to Downing Street
BBC - Yeovil long Covid patient delivers Downing Street petition
Press & Journal - ‘We need help’: Nine-year-old girl battling long Covid in plea to the prime minister
SKY FYI - FYI episode 166 - Shown on SKY news.
Daily Express - Long Covid campaigners descend on Downing Street as 119,000 UK kids suffer horror symptoms
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.
Charity Number: 1196170 England & Wales, SC052424 Scotland.
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.
