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Why create a Long Covid Bill of Rights?

Updated: Apr 18

“I got told I was anxious”

 “When I finally got to see a specialist, they told me they don’t believe in Long Covid”

 “Filling in forms is impossible, my brain just can’t process what I need to do”

 “I’ll try anything to get better, but I don’t want to take something that could make me worse.”

 “The nurse said we won’t understand Long Covid in my lifetime.”

We hear stories like this from people with Long Covid every day, and it breaks our hearts. As an advocacy charity, we also hear too many excuses when we explain how so many people with Long Covid are dismissed and feel isolated. It's the same old story from the government: “Long Covid has had £50m in research funding” every time we explain the need for more research and help for people with Long Covid.

We know that people with Long Covid are doing their best to self-advocate for themselves in a world that doesn't want to hear from them. 

We know that dedicated researchers are finding it impossible to get funding to investigate Long Covid mechanisms and treatments, and when they do, bureaucracy slows their work down.

We know that the £50 million research funding was spent in 2021. We know that people with Long Covid are desperate for treatments, but they don't want to risk getting any worse by trying something unsafe.

We know how hard it is for friends, family, and colleagues to believe you when your doctor won't.

We know that filling in forms feel like climbing mountains, and we know how hard it is to access help and support.  

It’s time to take a stand (or a seat, or lie down) for people with Long Covid, and ask the government, the NHS, and the organisations that fund research to guarantee us basic rights.

  1. We deserve to be believed.

  2. We deserve a diagnosis.

  3. We deserve support  - and help in getting that support.  

  4. We deserve safe healthcare.

  5. We deserve to have high quality research funded to help offer us hope.

We’ve created a petition to ask for these basic rights to be guaranteed, and a template letter to send to your MP.

Please sign, send and share so that we can make your voices heard, and have those in power guarantee our basic rights.

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