"Long Covid, Functional Neurological Symptoms."

I have Long Covid and Functional Neurological Symptoms secondary to Covid. I caught Covid-19 in the early days of the pandemic (April 2000) while working at Western General Hospital in Edinburgh. I was in Edinburgh to study but Covid put paid to that. In December 2000, I transferred to Aberdeen Royal Infirmary. As a result, I've had my conditions managed in both NHS Lothian and NHS Grampian, been a patient with four different GP practices, and been seen by numerous wards and services.

I experienced a moderately severe acute Covid infection; diagnosed clinically after a major outbreak on my then ward at WGH. The initial infection developed into what has been referred to as sub-acute or ongoing symptomatic Covid-19 (i.e. 4-12 weeks), then chronic or post-COVID-19 syndrome (i.e. symptoms and abnormalities persisting beyond 12 weeks). 

Early symptoms included fever, dry cough, chest tightness and breathlessness progressing over the following weeks to include chronic fatigue, headaches, vertigo, chest pain, muscle pain, joint pain, breathlessness, kidney pain, increased urination, tinnitus, impaired hearing and more. I tried to return to work several times, finally making it back to work in June 2020. I was still plagued by symptoms but I'm not one to stop trying.

The doctors at my initial GP surgery were outstanding, especially as knowledge of Covid was poor at this time. The doctors involved the Lothian's Regional Infectious Diseases Unit early, referred me to WGH as needed and made a huge effort to support me. Staff at WGH's Medical Assessment Unit were outstanding, too.

I found NHS Lothian's Occupational Health to be horrible, with a staff member telling me I couldn't possibly have Covid beyond 43 days and warning I would be investigated for absence management. This was extremely unpleasant, especially as I was making every effort to return despite being unwell,

I had a number of minor collapses from July through to November, some at work, culminating in a major collapse on my new ward at WGH. The left side of my body shut down with symptoms that mimicked stroke and I was rushed to MAU. After several days, I was diagnosed with Long Covid and Functional Neurological Symptoms secondary to Covid. My treatment up to this point was good, but things went downhill after the consultants passed on the news. 

A registrar informed me that as I had a condition for which there was no clinical pathway and they needed a bed with telemetry, I would be discharged immediately. I was put in the Relatives' Room and my wife phoned to come and get me. It was a long drive to collect me. I still couldn't walk without assistance so when she arrived she draped me over her shoulder and we staggered out to the car. She got me back to my room, upstairs in a shared house. 

That night, my wife had to give me backslaps to clear my airway as I choked on soft food (no SALT assessment in hospital despite swallowing issues). Then, while trying to get to the toilet, I fell down the stairs, smashing my face and cracking a tooth. In the morning I choked again and needed more backslaps to clear my airway. Lothian Neurophysiotherapy phoned nine months later to triage me, but by then I'd returned to Aberdeenshire so they discharged me.

My then Charge Nurse, when I let them know my diagnosis, warned I was in for a rough ride with Functional Neurological Symptoms as it was a poorly understood condition, stigmatised by many and often led to negative judgments. They were right. I'd changed to a new GP practice in Edinburgh and I found this practice dreadful. I spoke to three different GPs post-collapse: one accused me of malingering, one said I didn't have a real condition and was looking for time off work and one provided a minimal fit note stating collapse only after the intervention of my Charge Nurse.

I transferred to NHS Grampian and the ARI in December 2000, staying in Aberdeen as I was still unwell but determined to do my bit during the pandemic. My new GP provided outstanding support during this time, trying (and sometimes succeeding) in getting me referrals to various services. NHS Grampian Audiology has been superb, really living up to the ideal of holistic person-centred care - I burst into tears at one appointment as it was so unusual to receive such empathic, kind and professional care. Neuropsychology at the ARI were a help, although limited to just two group sessions, and I learned much more about FND. (Previously, I'd been told to visit a website  and self manage.)

ARI Neurology confirmed my diagnosis and that was that. Oh, I was given the website again.

My current GP practice, having moved back home, has been poor. It's been extremely difficult getting consultations - on one occasion I completed e-Consult and after three days was emailed a patient satisfaction surgery. A GP did phone after Neurology contacted the surgery and said that they didn't see why I was seeing a neurologist for normal aches and pains.

I'm off work today as it was too dangerous to drive thanks to chronic fatigue, chronic sleep deprivation and chronic pain leaving me wiped out. I also have faecal incontinence, tinnitus, hearing impairment, mobility issues and more. I'm currently awaiting a GP callback but am expecting the usual response that I should self manage. 

Well, thanks to my rehab skills I have been self managing but after 30 months it's beyond my abilities. I'm getting counselling from NHS Grampian Occupational Health to help me cope but, frankly, I'd rather have professional healthcare help in managing symptoms than be left to my own devices with advice to self manage. I don't believe we would say that to a patient with a broken leg, cancer, COPD or a cardiac arrhythmia.