Moose Woman 🇨🇦🏴💚🤍💜 retweetledi
A friend passed this to me, saying it might be helpful - it's about getting help on Long Covid from your GP, it's for a UK setting, but some of it will be applicable anywhere - read the note at the end for more too.
"I work in AI. I used it to research and write my mum a letter about her Long COVID. Her GP called her the next day after 3 years of being dismissed!
*Reposting here as myself since it blew up in another support group and people really want help with this… feel free to add/DM me.*
So I work in AI, specifically in healthcare tech. So when my mum had been fobbed off by her GP for the third year in a row about her Long COVID, I figured I should actually do something useful with what I know.
This isn't about gaming the system or bending rules. Everything I'm sharing here is publicly available on NHS and government websites. I just used AI to find it, understand it, and turn it into something a GP couldn't easily brush off.
Here's what most people don't know. The NHS publishes detailed guidelines that GPs are expected to follow. NICE published a specific Long COVID guideline called NG188 that sets out exactly what a GP has to do when a patient comes to them with ongoing post-Covid symptoms. Most patients have never heard of it. Most GPs don't follow it unless someone pushes them on it.
The other thing most people don't know: verbal dismissal is easy to ignore. A formal written letter that references specific guidelines creates a paper trail. The GP now has a documented duty of care they're expected to respond to. It genuinely changes everything.
My mum is 61. Not remotely tech savvy. She would never have found any of this herself. I spent about 20 minutes using AI to pull the relevant guidelines, match them to her situation, and draft a letter. She sent it to her GP by email on a Tuesday. Her GP called her on Wednesday afternoon. First time in three years a GP had called her. She now has a referral to a Long Covid clinic and a written management plan, after years of being told it was probably anxiety or just her age.
Posting her letter below with her details redacted. Copy it, adapt it to your situation, send it by email not in person. You need a timestamp. You need a record. That's what actually forces a response.
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[Her letter, personal details redacted]
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████████, ██████
██ ██████ 2025
Dr ████████████
████████████ Surgery
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████████, ██████
Re: Formal written request for Long COVID assessment and personalised management plan
Dear Dr ████████,
I am writing to formally request appropriate assessment and management for post-COVID-19 syndrome (Long COVID), and to create a written record of this request for my medical file.
I contracted COVID-19 in ████████ 2022 and have experienced the following ongoing symptoms for over three years:
• Severe fatigue and post-exertional malaise, symptoms worsen significantly following any physical or cognitive exertion
• Cognitive dysfunction, difficulty with memory, concentration, and word retrieval
• Breathlessness disproportionate to exertion
• Heart palpitations and episodes of tachycardia
• Disrupted sleep despite significant fatigue
• Generalised pain and joint discomfort
These symptoms have substantially impaired my ability to work, maintain daily activities, and quality of life.
CLINICAL BASIS FOR THIS REQUEST
NICE guideline NG188, COVID-19 rapid guideline: managing the long-term effects of COVID-19, was developed jointly by NICE, SIGN and the Royal College of General Practitioners. It applies to any patient with new or ongoing symptoms four or more weeks after acute COVID-19.
Under NG188 section 5.2.1, GPs are expected to use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management.
Under NG188 section 5.2.2, GPs must work with the patient to develop a personalised rehabilitation and management plan, which must be recorded in writing. NICE states explicitly that healthcare professionals are expected to take this guideline fully into account. This is not optional guidance.
Under GMC Good Medical Practice (2024), where a GP cannot adequately manage a patient's condition, they are required to refer to a specialist with the relevant expertise.
Under the NHS Constitution, I have the right to be referred to an appropriate specialist where my GP is unable to provide the required clinical management.
I have not received a personalised management plan or specialist referral in three years of presenting with these symptoms.
WHAT I AM FORMALLY REQUESTING
1. A holistic clinical assessment consistent with NICE NG188, including physical, psychological and functional domains
2. A personalised rehabilitation and management plan recorded in writing, as required under NICE NG188 section 5.2.2
3. Referral to the Long COVID clinic or appropriate multidisciplinary rehabilitation service
4. A written response to this letter within 14 days
I would like this letter to be added to my medical record. I am not requesting anything outside published NHS guidelines. I am asking for what those guidelines state I am entitled to receive.
Yours sincerely,
████████████████
Date of birth: ██/██/████
NHS number: ███ ███ ████
Based on: NICE NG188 (January 2024) | GMC Good Medical Practice (2024) | NHS Constitution (2023)
*Verify current guidelines at nice.org.uk before sending.*
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Same approach works for basically any condition where you're being dismissed. MCAS (I am currently writing myself a letter to escalate my own issues with this), fibromyalgia, EDS, POTS, chronic fatigue. The escalation pathways exist for all of them, most people just don't know how to use them.
If it’s useful I could build a tool that does this automatically for you. You answer a few questions about your condition, it finds the relevant guidelines and drafts the letter for you. If that sounds useful, DM me or comment. Happy to write one manually for anyone in the meantime.
Not medical advice! Keep seeing your GP. Call 111 if anything gets worse."
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