"My experience of care has been very much pot luck"

I first contracted Covid in the spring of 2022 and never fully recovered. I needed steroids for my lungs to help me through it. I was left with debilitating fatigue and Covid symptoms such as muscle aches and pains, brain fog etc. The extent of the fatigue was life changing and I cannot emphasise this enough.  I found I could no longer work and struggled to carry out normal activities such as housework, cooking, walking the dogs etc. I became reliant on family members to carry out all that I had done prior to Covid.

Pre-Covid, I was asthmatic and post-Covid after a CT scan, I  was diagnosed with COPD. As a result of my GP’s changing my inhaler, I landed in PRI with breathing difficulties. I  was seen by Mr Mathewson, Respiratory consultant who just happened to be on call. Straight away he knew that because my steroid inhaler had been withdrawn, my asthma was not being supported. He arranged blood tests to see what allergies I had, follow up appointments with the Respiratory nurse.  He even followed me up himself with a phone call several months later. He was and is exemplary. 

As a result of the COPD diagnosis I was referred to Physiotherapy Pulmonary Rehabilition classes. Unfortunately after one class which consisted of exercise, it left me in bed for 7 days, with complete exhaustion, so I did not continue, but Lindsey from the team referred me to the Perth and Kinross Long Covid Service who I started seeing in 2024.

I have been seeing Gail from the service who has helped me enormously. She got me started with pacing, which is how to conserve energy so that I don’t end up in a boom or bust situation, ie attempting  to do too much, exert too much energy and end up exhausted, having to go to bed.

Gail also suggested that I might like to look up a private doctor who specialises in Long Covid and POTS and consults privately in Perth as well as online appointments. Having seen this doctor last month, they have put me on 2 antihistamines and Naltrexone. Since then I have had no episodes of fatigue and feel much more like my old self with only a few off days. It has been transformational.

I remain with other issues which are double vision in one eye, an autoimmune disease with a further one to be confirmed, changes in my balance and how I am walking. I have been attending the Ophthalmology Dept at Ninewells for 2 years now and since Covid. In that time I have had two MRI scans which show vascular changes to the brain, not present on the 1st scan, but present 10 months later, in which time I had had Covid again. 

I  had a recent stay at Ninewells at the Stroke ward because I had woken one morning and been unable to balance. Later in the day I had lost my balance completely and fallen into our kitchen door. So I went into Ninewells via ambulance to A&E. I  was then transferred to Acute Medical, then the Stroke ward and had an MRI scan. From start to finish I was seen by 6 or 7 Doctors including one from Neurology. I went through all the same questioning and tests with each and every one and realised that all I had said in the beginning about what was happening to me, wasn’t all being transferred onto the next Dr necessarily. Nothing seemed to join up. It was all fairly incohesive.

A stroke was ruled out but a question mark remained over MS. A lumbar puncture was mentioned by a few doctors , but by the time I was discharged with a walking stick, my balance still way off and given no diagnosis, being told it was probably long Covid and I would recover, I felt thoroughly and utterly demoralised and concerned for the future. A private Dr has since referred me back to Neurology. They weren't happy that I could not carry out a heel to toe walking test.

The GPs seem to be under immense pressure, but my experience since Covid has not been great. There has been no interest, help or support from them whatsoever regarding LC. I’ve had several stays in hospital the last 2 years and had no follow up phone call whatsoever from them. You wait 2 to 3 weeks for an appointment and failing that, you phone and go through to a Clinician.

I found the Clinician I spoke with rude, hostile, intimidating,  argumentative and unfriendly. I’ve had them put the phone down on me in the past. I will not phone on the days I know they are working unless absolutely essential. I have never experienced anything like this, at any of the practices I have belonged to and it does not encourage any trust or faith in the practice.

My private Dr wrote to my practice recently with a couple of concerns they had after seeing me (which I dealt with before seeing a GP). These were followed up by a doctor at the surgery, who was super.

My experience of care since Covid has been very much pot luck. If you get to the right person, you will be in good hands, if not it’s very negative. 

I'm grateful for Gail of the Long Covid Service who has been supportive and offered hope and a light at the end of the tunnel. Also to my private doctor, who provides an invaluable service for Long Covid patients. What they offer is desperately needing rolled out in the NHS, to support the 1.8 million people currently suffering with long covid.

Helen of Opthamology at Ninewells and Mr Mathewson, Respiratory Consultant at PRI, have been what each and every one of us hopes to encounter in the NHS.