Carrie

@Dr2NisreenAlwan It's not happening though. My Cardiologist said the NHS couldn't afford to investigate my ongoing 11 month post Covid heart problems. He suggested I get myself onto an imaging study if I want to rule out pericarditis with an MRI. Charming.

What #LongCovid patients need from healthcare in 1 tweet: 1.Listening 2.Recognition that something is wrong 2.Proper clinical assessment 3.Appropriate investigations 4.A solid diagnosis to help with employment rights 5.Treatment of treatable pathology 6. Rehab as appropriate

@WoollerEmma @AppgCoronavirus @Dr2NisreenAlwan @ClaireHastie1 @gezmedinger @elisaperego78 @ptsafetylearn Constantly hitting a wall here. 11 months in & discharged from Cardiology with untreated post Covid tachycardia, sob, heart pain that gets better when leaning forward, orthostatic intolerance and recurrent fever. Consultant said NHS would not fund any further tests. Just great.

No cardiology, neurology, Rheumatology, endocrinology, infectious diseases... This is a 'one-stop-shop' only in the sense that investigation stops here. #stopNHSgatekeeping @AppgCoronavirus @Dr2NisreenAlwan @ClaireHastie1 @gezmedinger @elisaperego78 @ptsafetylearn

@MattHancock @NICEComms 1st appt w/ #LongCovid clinic. All common symptoms - cognitive dysfunction, headache, tremors, paraesthesia, muscle weakness, tinnitus, body aches - assumed to be part of "fatigue", therefore do not require investigation & should improve by use of an app.

@stillillcorona1 @LongCovidSOS @long_covid I'm 11 months in & I've seen a clinic, but they offered me breathing techniques. I have tachycardia, sob, heart pain, orthostatic intolerance and fever. @uclh are constantly quoted online about LC treatments, yet it's not available to all. Utterly pointless.

Really concerning to see that I am not the only one who is struggling with access to treatment for #LongCovid after being ill for 11 months. Am interested to find out more experiences of those attending #longcovidclinics - my referral was rejected @LongCovidSOS @long_covid

@LongCovidSOS @isabelledelez @itsjamestapper @uclh 11 months in now and Cardiology have discharged me, with ongoing untreated tachycardia, heart pain, sob and orthostatic intolerance. Apparently, the NHS won't fund any further investigations into my issues according to Consultant. I'm 39. Now what?

#LongCovid: ‘It’s a year since I’ve felt like myself’ As the one year anniversary looms for many @itsjamestapper talks to two people still struggling with symptoms and hears from Dr Melissa Heightman about the @uclh clinic theguardian.com/society/2021/f…

@Dr2NisreenAlwan It'll be wherever the database is for Long Covid sufferers.

So how are we monitoring covid infections following vaccination (1 and 2 doses)? Where’s that database?

@LongCovidPhysio This isn't how Cardiologists are assessing post Covid heart issues though. I have chest pain 9 months in, which only occurs during movement. I've had a normal echo, so they won't investigate further. It's really frustrating.

Reports of #LongCovid affecting athletes around the world ... we hope that a risk stratification approach is being adopted to exclude post-exertion malaise and potential cardiac involvement before training restarts after acute infection with #COVID19 skysports.com/football/news/…

@tes @BBCOne What about the schools still open in areas that have higher infection rates than some London boroughs? If it's not safe to open in London, then it isn't safe elsewhere. This isn't right.

Should pupils be sent to school tomorrow morning, Boris Johnson is asked by Andrew Marr on @BBCOne: “Yes, absolutely they should, in the areas where schools are open,” he replies.

@Dr2NisreenAlwan I'm 39 and just over 9 months in. No previous health problems. I was admitted to hospital in month 8 due to Covid heart problems. I'm getting worse over time but there are no NHS cardiology appts so I'm having to pay to go private. Haven't worked since March.

Hands. Face. Space. Fresh Air. protect health in all ages. ONS estimates 21% of all people with covid are still unwell at 5 wks & 10% at 12 wks. If u have #LongCovid can u reply with your age & how long you’ve been unwell? Make #CountLongCovid trend again. People are forgetting.

@jac_cully After doing the legwork to find the clinic and giving the details to my GP, who was happy to refer me, I was then told they don't actually know HOW to refer people there and they'd get back to me. Wtf? That was a week ago. Why is this so difficult?

@remmy_308 @LongCovidSOS @Daltmann10 I have a clinic local to me. I did the legwork to find the details via my CCG, gave them to my GP last week and they don't know how to refer me to it, so I still don't have an appointment. You couldn't make this shit up!

@LongCovidSOS @Daltmann10 And still no clinic's 😕

According to @Daltmann10 there may be 5-10 million people "with a long-term condition for which we have no current explanation and no treatment plan" #LongCovid theguardian.com/society/2020/d…

@BirgitC @CovidSolidarit1 Yes, UK. I'm much pushier now about bloods/investigations etc.

Who can relate? ✋ medicalnewstoday.com/articles/long-…

@CovidSolidarit1 Clearly won't be seeing him again. It's all just so relentless and exhausting isn't it? 9 months next week.

@c22 What? Why do they lie like this?

@Daltmann10 19 years ago I developed an autoimmune disorder 5 months after recovering from mono and spent the next 10 years on immunosuppressants. 5 months after recovering from Covid I relapsed with heart problems and haven't been well since. Back to the immunosuppressants then perhaps?

@Dr24hours Oh my God! How utterly devastating for you and your family, I'm so sorry for your loss. My thoughts are with you all.