Long Covid Kids Founder & CEO
Hoping to be on the right side of history.
♿️#LongCovid ✳️#CleanAir 🙋🏻♀️Campaigner
🧠🧡🫀#LongCovidKids
🌊#ColdWater 🧜🏻♀️#Swimming
🧘🏻#Pilates coach - #Pacing since 2020 🦠 😷
🫅🏼#CoronationChampion 💥#Volunteer
Sammie McFarland
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4. The devil is in the detail. A joined-up @england.nhs.uk
record is only as good as the information it contains. Accurate diagnosis, meaningful clinical coding, patient trust and the ability to challenge inaccuracies will be essential.
www.england.nhs.uk/digitaltechn...
#LivedExperience #NHS
Excited to share our systematic review of the clinical features of metastatic Crohns disease (MCD). Many patients with Crohns - a type of IBD develop symptoms outside of the gut- most commonly the skin. 🧪🧵#IBD
Send our template letter to your elected representative today and ask them to attend the APPG on #LongCovid on the 24th June.
Paediatric focus.
They will hear directly from a young person with Long Covid, a presentation from LCK and NHS colleagues.
www.longcovidkids.org/post/all-par...
This #research found that many #children and young people living with #LongCovid face challenges that go beyond their physical symptoms. The study highlighted how #stigma and #misunderstanding can affect different areas of life.
www.nature.com/articles/s41...
#longcovidkids #longcovidresearch
The next APPG on Long Covid meeting will be held on Wednesday 24 June at 4pm.
@longcovidkids.bsky.social will be presenting on the impact of Long Covid on Children and Young People. Please do write to your MP and ask them to attend this very important and insightful session.
#LongCovid #APPG
1. The proposed #NHS Single Patient Record has huge potential. Too many patients still spend precious time and energy repeating their medical history, carrying information between services and trying to connect parts of a healthcare journey that should already be joined up.
3. I was also interested to see #LongCovid specifically referenced, not only as a condition that could benefit from improved data, but alongside cancer, diabetes and heart disease in discussions about the development of diagnostics, treatments & cures. That feels significant.
#Equality #Disability
2. For people living with #LongCovid and other complex fluctuating and multi-system illnesses, "tell your story once" is a powerful principle. (Personally, I'm doing a little happy dance about that.)
#LongCovidKids #PatientSafety #NHS
I’m thrilled that @longcovidkids.bsky.social appointed George to guide the mission.
His appointment strengthens our commitment to keep the needs of young people central and, I hope, inspire more young people to share their views and get involved.
#Charity #YoungVoices #ChildrensRights
New article from the team of @profmarkfaghy.bsky.social highlighting how lived experience should be part of all stages of research and not simply tokenistic.
Patients are the expert in their condition and there is always more to hear and learn from them.
link.springer.com/content/pdf/...
fg.bmj.com
The APPG will focus on the experiences, challenges and needs of children and young people living with Long Covid, ensuring that their voices and realities are at the centre of the conversation.
