Day 288 of living with #LongCovid – here is a thread about my disappointing patient experience with the doctor at the NHS Long Covid clinic yesterday https://twitter.com/ManeeshJuneja/status/1351995903725490178?s=20 1/n

For those who haven’t followed my journey for the last 9+ months, I’m am now fairly clued up in terms of post viral illnesses like Long Covid in terms of pacing, coping with relapses etc from my GP & other patients - was just hoping for more answers from this clinic 2/n

So my GP referred me to this clinic in Nov 2020 (7 months after symptoms began) & I had been to this clinic in Dec 2020 (for a 6 min walk test & for blood test with blood taken from earlobe) – the results of which were supposed to be shared with me during yesterday’s visit 3/n

Once I arrived at the Long Covid clinic (after two checkpoints for infection control) I was asked to fill in this survey whilst I waited for the doctor to call me (the survey also included other pages about my symptoms back in April 2020 as well as my symptoms in last 2 wks) 4/n

A doctor called me into a room, but didn’t introduce himself, and he examined my completed survey whilst opening up stuff on the computer. He didn’t have access to my medical record, just whatever my GP had sent over (mostly blood test/imaging results) 5/n

He told me he didn’t think I had covid in April 2020 given that my PCR swab test done at 2 months after symptoms began was negative and my antibody test done at 3 months after symptoms began was also negative (He didn't explain what I had if he thinks it wasn't covid) 6/n

He asked me how I’m feeling now (I was feeling good for 2 days after a 3 week long relapse) and quizzed me a bit more on my history (in terms of symptoms I had entered in the survey) as well as mentioning that he could see I’d had lots of investigations in summer 2020 7/n

The doctor then mentioned that this was a holistic assessment from him and he didn’t see the need for any further tests at this point, so the next step would be for me to see the physio in the room next door. Physio would discuss an action plan in terms of fatigue management 8/n

What about my debilitating symptoms though, that prevent me from living a normal life? Can you tell me anything more about the intense pressure I sometimes have in my brain (not a headache) which is one of the worst symptoms? https://twitter.com/ManeeshJuneja/status/1304021332900941824?s=20 9/n

He then told me I came across as very anxious about my symptoms, which surprised him because I had ticked “not worried” in response to one of the survey questions about how worried are you in the last 2 weeks (or something along those lines) 10/n

I was taken aback and reminded him that I’ve been on this weird rollercoaster ride of an illness for 9 months and have waited so long to access to a Long Covid clinic (with doctors who have seen other Long Covid patients) and that I was hoping I would get some insights 11/n

His response was that if he were to ask 100 people in the general population, a lot of them would say they also have headaches (Huh? I thought to myself as I’ve had headaches in the past but nothing like these weird sensations in my brain since April 2020) 12/n

He then said that patients like me are in a hyper vigilant state due to what they have been through & in their minds, they associate ANY change/new symptom with their illness (even though it's unrelated) & this thought process feeds through and makes things worse 13/n

He then mentioned “I wouldn’t have ordered any of those tests” – referring to the fact that I had paid to see specialists last summer (because nobody knew what Long Covid would do to the body and I wanted to rule out other diagnoses too) https://twitter.com/ManeeshJuneja/status/1286352991335874560?s=20 14/n

I don’t know how to interpret his comment. My GP actually referred me to a NHS neurologist around 7 months ago, and I still haven’t even received a letter to tell me when I might even have an appointment (I have no regrets paying to see specialists last summer) 15/n

At this point I felt like my awful experience with clusters of debilitating symptoms (like when I couldn’t stand up or remember how to open the fridge!) for 9+ months was all in my head, and somehow I was making things worse because I happen to be tracking my symptoms 16/n

He was keen to get me out of the room and back into the waiting room, but I still had questions for him, that I have been waiting to ask a Long Covid doctor for months! 17/n

I asked him if there are any treatments (He said no) – are there any issues if Long Covid patients have a covid vaccine (he said no evidence at this time, so get the vaccine) – are these persistent symptoms damaging my body in any way (He said no) 18/n

I just thought he might know more than my GP (and other patients)

I don’t know why as a Long Covid clinic, given they have a wealth of knowledge, they can’t have a printed (or online FAQ) that summarises what they have learnt so far after seeing so many patients 19/n

I didn’t have any more questions, he told me he didn’t think I needed to be seen at this clinic again (unless the physio wanted to refer me to further services) & that the physio has far more experience than him in terms of developing an action plan for dealing with fatigue 20/n

I didn’t want to argue with him in terms of the fact that when my relapses happen, I don’t just have fatigue, I have all sorts of symptoms (which I had entered on the survey)

I went back into the waiting room, wondering what just happened 21/n

I felt so disappointed as a patient. Should I skip the physio and go home now?

I’m glad I didn’t, the experience with the physio was the complete opposite, where I felt like a partner in my own care (I’ll do a thread about that tomorrow) 22/n

It’s only when I got home from the clinic that I realised that neither the doctor (nor the physio) had actually gone through the results from my 6 min walk test including the blood taken from my earlobes. Maybe I can view the results in my NHS medical record at some point? 23/n

If you are also a Long Covid patient, I don’t want my experience to stop you from attending a Long Covid clinic.

I hope your experience is significantly better than mine, and if anything, you can use my experience to better prepare yourself for your own visit 24/n

As I head towards my Long Covid 10th month anniversary since my symptoms began & praying that my symptoms never come back & that one day I can make a full recovery, please stay safe out there.

You don’t want to go through this saga if you can avoid getting the virus /end