Have you accessed a Long COVID clinic?

It was announced today that more than 60 clinics are operating in England to provide support to Long COVID patients. 

Have you had a medical appointment at a Long COVID clinic? What was your experience? 

Or perhaps you're a patient who would like share your thoughts on the newly published NICE guidelines for managing the long-term effects of COVID-19?

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Concerns over how chronic fatigue is being addressed it needs thorough investigating and not just left to resolve with cbt that we know from ME patients is not helpful -now is the time to investigate to help long covid /ME chronic fatigue sufferers properly 

I'm hoping that the Long COVID clinics link up with all initiatives for people with long term conditions. We started looking at medicines and expanded this to include ALL treatments and approaches.

We're looking at how our work can link with this.  Here's an early video on our work:

More here:

 https://medicinegovorgmedlearn-innovation-event-nhs.blog/patient-education-support-sessions-helping-you-manage-your-own-care/

 

 

 

Over the past few months I have been suffering with most if not all of the typical long covid symptoms. I just had a telephone conversation with a doctor who has told me that because I was not tested for covid19 and found to be infected and because I was not tested for covid antibodies before I received my first vaccination injection that I cannot be considered to be a long covid sufferer and therefore would not be accepted by a long covid clinic. Is this correct ?

This is absolutely not correct. 

From the NICE guidance ‘Do not exclude people from referral to a multidisciplinary assessment service or for further investigations or specialist input based on the absence of a positive SARS‑CoV‑2 test (PCR, antigen or antibody).’

https://www.nice.org.uk/guidance/ng188/chapter/3-Investigations-and-referral

Please see a jointly produced leaflet by us and the RCGP 

 

People have said that they have found this helpful in discussing with the GP. Hope it helps. If it does, can you let us know? 
 

Best wishes

Helen 

and @Stephanie O'Donohue

Hi @nickbouere, there are many people who, like you, were unable to access a test at the time when they would have tested positive. Helen's reply above references the NICE guidelines and also a leaflet we joint produced to help patients evidence how GPs should be supporting. 

The Royal College of GPs also states:

"You do not need a positive SARS-CoV-2 test, or have been admitted to hospital to be diagnosed with post COVID-19 syndrome. Anyone with an acute infection of COVID-19, however mild, can go on to develop post COVID-19 syndrome"

Taken from this document: Management of the long term effects of COVID-19. The RCGP response and top tips for caring for our patients