My GP has been brilliant since my #covid19 symptoms began, listening to me & being there for me.

However, the last call with her to check in on my #longcovid was not great, & left me feeling like I don't really want to interact with her again about my symptoms [thread] 1/n

For context, the last few calls have been "check in" calls given that I started to head in the right direction, despite relapses 2/n

Typically, after each "check in" call, it's been about 2 weeks until the next call, and my GP asks me to call a week before the next call, to request a telephone appointment 3/n

Rather than being given a fixed time, I'm told my GP will call me during a 2 hour slot on a certain day for these "check in" calls. Despite not being formal appointments, she's listened to everything I've said and given me lots of time for me to ask questions 4/n

She called me last Wednesday, and this was the call where her behaviour left me feeling rather frustrated and disappointed. She started by reading a summary of the letters from specialists I'd seen to check for damage to my organs (none thankfully) 5/n

When she asked how I'm doing, symptoms/relapses, I explained how my recovery seems to have begun (i.e. most symptoms have gone, but some remain. I'm quite active but my body isn't entirely normal) - She then wanted to end the call & schedule a check in call for 3 weeks time 6/n

I had to divert her attention away from wanting to end the call & pose the questions/concerns I had for her, such as "Am I still at risk of a relapse, even though I've not had one after many days of being quite active?" - She told me I would still have good days and bad days 7/n

I asked her about my main symptom that has been with me 24 hours a day for 3 months, with my lower body, i.e. I can walk for miles, but I still have trouble lifting myself off the toilet, it's painful to walk/up down stairs & if I try and push up from a squat, I cannot! 8/n

I pointed out that after I had a manual lymphatic drainage (MLD) massage session, I had immediate relief from my lower body symptoms, but then the relief went after 24 hours. She didn't even acknowledge the MLD or even comment on the temporary relief 9/n

She then again tried to end the call and wanted to schedule the next one. The call had only been a few minutes so far. I asked her about my lower body symptoms, given the legs MRI had shown no signs of damage. She just said it was "post viral" and nothing else 10/n

She also then said "Now don't go ordering any more [self-funded] investigations" - in a tone of voice the way a parent speaks to a child that has done something wrong.

That was the worst aspect of the call 11/n

Like the almost £8,000 I spent to check my heart, lungs, brain and legs for signs of damage from covid-19 was something I did for fun and enjoyment. I'm genuinely concerned about my lower body symptoms that have been there for months now 12/n

I've told her on many calls that my lower body symptoms don't feel like muscle fatigue/weakness. Parts of my lower body just "switched off" months ago, & haven't "switched back on" - she said, your lower body symptoms are "intermittent", I said, err, no, they are there 24/7 13/n

Now I realise why she was telling me my lower body symptoms are "intermittent" on the phone. I noticed this entry in my medical record later that day 14/n

This was the first call where I could ask her about the newly launched "Your COVID recovery" scheme from the NHS and whether I could get personalised rehab for example. She didn't seem to be aware of it, and had to google it there and then https://www.yourcovidrecovery.nhs.uk/your-road-to-recovery/what-next/ 15/n

She then said it's probably just for patients who have been hospitalised, but then she said even if I was eligible, the service is not operating in her primary care area. Oh ok, duly noted. 16/n

I told her I do think I would benefit from some personalised rehab, especially given I was largely in bed at home for the first 60 days and my lower body symptoms have been with me for 90 days. Is there anything the NHS can do or should I find help myself? 17/n

This call felt different because the entire time, I felt like I was bothering her, like I'm a nuisance. She told me that there was an existing service where I could self-refer for physio. She gave me the wrong URL, but here is the correct one https://healthshare.org.uk/refer-patient/  18/n

Just to manage my expectations, I asked her after I self-refer, what's the process? How long do things take? She told me that after I submit the form, the service would call me in a couple of days to assess me.

It's been over a week, I've not had anyone call me 19/n

I don't know why my GP's behaviour was so different on this call, why I came away feeling like I was being a nuisance for sharing my current concerns and asking questions? Is it because my scans showed no organ damage, and everything is now just assigned to "post viral"? 20/n

If my GP doesn't know what's happening with my lower body symptoms, she could just say "I don't know" or if the NHS is under so much pressure, she could just say "I don't know when the physio people will get back to you"

I'm an adult, not a child. I can handle the truth 21/n

From a patient's perspective, I'm wondering if this kind of "check in" call would have been more efficient (and possibly more pleasant) as an interaction with a chatbot on my phone or even a smart speaker? I wouldn't have to wait 2-3 weeks, I could do it anytime 22/n

Getting back to my own #longcovid recovery, just like with seeing specialists to check my organs for damage, I feel like I'm on my own again, and if I want some kind of personalised rehab/physio in a timely manner, it's something I will have to arrange and pay for myself 23/n

I don't think I want to schedule a subsequent "check in" call with my GP for a few weeks time. The NHS doesn't have the resources to do anything for me (which I understand) and my GP doesn't seem to be taking my concern about my persistent lower body symptoms seriously /end