Time To Tell ScotGov The Truth About These Five Things
Finally, the Scottish Government's Long-Delayed public consultation on long-term conditions is here. We only have until 20th July, to be heard.
We've already shared why it's important you respond to the public consultation and Long Covid Scotland will be submitting an official organisational response. But it's critical that as many individuals – patients, parents, and partners who are still impacted by long covid, speak up too.
This is a vital moment.
The Scottish Government is rethinking how it supports people with long-term conditions, from access to care to how services are funded, designed and delivered. If they don't hear from patients, they'll do what's most convenient for politicians.
And while they've named Long Covid in their strategy, let's be honest: we are not the loudest or most established voices in the room, It's wrong that we and other sick people have been put in a position where we're competing against other ill people for attention. All these causes are deserving. It is so important that everybody's voices are heard.
So if we want Long Covid to be heard and not be an afterthought absorbed into services designed for other conditions, then we need to show up in numbers.
🗣️ Why your individual response matters
Policymakers pay attention to patterns. The more people who mention Long Covid, the harder we are to ignore. One response can get lost in the noise. But ten thousand voices saying the same thing? That becomes impossible for them to overlook.
We know you're exhausted.
We know many of you won't have done this before.
But your lived experience is expertise.
This is not about writing an essay or being 'good with words'. It's just about telling your truth to power. Just say what's gone wrong, what's helped, and what needs to change.
A wee bit of preparation will help make your response effective.
🧭 How to prepare your response
The Government wants to hear from people living with long term conditions, carers, and professionals. The consultation is asking about five key areas:
Access to care
Data collection and use
Self-management and patient information
Clinician education
Prevention and early intervention
So before you start writing, take a few minutes to think about each of those areas; for each one, you might ask yourself:
What's been your worst experience?
What's been your best experience?
What has helped you the most?
What's been your biggest struggle, fear, or frustration?
If the Government could change one thing in this area, what would it be?
You don't have to answer every question in the consultation. Just speak from the heart, and where you can, be specific with dates, locations, and services. That's what makes your response powerful.
🧩 A closer look at the five themes
1. Access to care
Have you been waiting months for appointments? Struggled with morning slots when you're dealing with fatigue? Did a flexible GP or community nurse make a difference? What services do you need but can't reach?
2. Data
Have you had to repeat your medical history over and over? Do your records reflect your condition? Would a joined-up system — where your care team talks to each other — change your experience?
3. Self-management and patient information
Do you feel informed about Long Covid? Have you found support, like peer groups, or just been left to Google? What's made self-management possible (or impossible) for you?
4. Clinician education
Have you been dismissed or misunderstood by a professional? Did anyone not 'get it'? What do clinicians need to know to support people with Long Covid properly?
5. Prevention and early intervention
What could have helped you get diagnosed earlier? Did anyone spot the signs, or did you feel invisible for months? What would help others avoid the worst impacts?
✍️ Tips for responding effectively
Use clear, everyday language — technical terms aren't necessary.
Share your personal experience — this is what policymakers remember.
Don't feel you need to write a lot. A couple of sentences or one paragraph per section is fine.
If you're short on energy, answer just one or two sections, which still counts.
Be honest and constructive. This isn't about blame; it's about change.
🕰️ Deadline and how to respond
We have prepare a guide that will give you some prompts and advice you can download it here.
The consultation is open until 20th July 2025. You can respond online, return a paper form, or email your views.
Even one paragraph makes a difference. Even a single voice will help shape the future of Long Covid care in Scotland.
There are 180,000 Scots with Long Covid. Let’s aim for 180,000 responses.