A personal perspective of Long Covid: As a patient and a professional

I caught Covid-19 in March 2020. I never got better. Nearly three years down the line I am better than I was but still nowhere near back to normal. I resigned from my academic job last year having taken my occupational pension early when I ran out of sick pay in 2021.

My ongoing symptoms include: fatigue, headaches, and cognitive dysfunction (commonly referred to as brain fog) – click here for more information about cognitive dysfunction and Long Covid. Other symptoms come and go – new ones appear. This is hardly surprising when more than 200 Long Covid symptoms have been identified. During the time I have had Long Covid I have received very little support from healthcare professionals – most of the care I have been offered is because I asked for it to be put in place by my GP. Even when I persuade my GP to do a referral it often bounces – e.g., both my neurology and endocrinology referrals last year were “sent back to my GP”.

As a registered nurse who has spent the last 25 years or more promoting evidence based health care it has been interesting on an intellectual level having a new disease. I don’t know if any of you saw the Channel 4 TV show It’s a sin but at times I’ve felt like a character from the show – one scene that particularly resonated was someone who thought they had AIDS/HIV in the mid 1980s ringing a hotline and asking whether a list of potential remedies, including drinking bleach, would cure them.

As someone who already had long-term conditions prior to getting Long Covid it has been scary, at times, not being able to access the help I need to manage them. Being diagnosed with new long-term conditions during the pandemic has also been challenging. The respiratory consultant from the local Long Covid clinic rang me up out of the blue. First, she told me I had diabetes and that I should “go on a low sugar diet”. She then went onto tell me that it appears that I had had a stroke. Thankfully, I knew enough about diabetes to know that going on a low sugar diet wasn’t quite the right thing to do but again I had to search out the information and treatment I needed. Even 18 months later I am still managing my diabetes myself. As for the stroke, after several months and a reminder phone call to her secretary, I was seen by a stroke consultant. Despite this I still have no explanation for why I have a white spot on my brain.

Discussion in the Long Covid Facebook groups suggests that Long Covid clinics vary in what they offer. There are currently very few nurses working in these clinics. After some initial diagnostic tests, my local clinic focused on rehab and learning to live with the symptoms with minimal ongoing contact. However, this wasn’t made explicit at the start, and it took me a while to persuade my GP that it was their responsibility to refer me to, for example, a neurologist.

So, one of the main issues for me as a patient over the past three years has been fighting to make sure I get the care I need – relevant tests and referrals. Due to my persistence, I am now getting some answers but still struggling to get others. One success story is my referral to the Harefield Hospital. This resulted in a range of tests that ruled out organic issues with my heart and lungs and a diagnosis of dysfunctional breathing disorder. Following several months of respiratory physio my breathing has returned to normal and my breathlessness is all but resolved. (For more information about the role of the respiratory physio in this context click here.)

It takes me months to summon up the energy to chase test results or referrals that don’t happen automatically. I realise the health service is at crisis point but this has been and continues to be hard work when living with Long Covid. An example is being told I would be followed up by the IBD nurses following a gastroscopy in June 2022. Despite leaving two phone messages I have still not heard from them over six months later – partly due to a lack of energy on my part.

When I think about what would have helped me on my Long Covid journey, the first thing that comes to mind is how beneficial having a specialist nurse to support me and advocate on my behalf would have been. The specialist nurse could also have co-ordinated the many appointments I have had with specialists at several hospitals. Having a specialist nurse I could email with an issue, knowing they would sort it out would have made my Long Covid journey less bumpy and potentially my access to care less sporadic.

Why is a specialist nurse the first thing that comes to mind? In my experience medics tend to focus on the part of the body they specialise in – e.g., my gastroenterologist is only interested in my gut and not the fact the analgesic drugs I am taking to manage chronic pain in my neck are not recommended for people with inflammatory bowel disease. Registered nurses, on the other hand, see people as a whole and as a part of the social context they live in. Long Covid can affect every part of the body and so taking a holistic approach to care is essential. Failing to do so is nonsensical and requires a change of focus in the care being provided to people living with Long Covid.

After a nursing career that spans over 40 years – starting as a volunteer in the local hospice while I was doing my A levels – I believe registered nurses provide holistic care underpinned by a belief that an individual’s health is impacted by many factors that are biopsychosocial in nature. For people with long-term conditions a specialist nurse who is knowledgeable about their multiple diagnoses and has some understanding or the interaction between each condition has been shown to improve their care. The TV advert about Macmillan nurses sums up for me how the specialist nurse travels on a patient’s journey with them.

Going forward, we need to draw on the expertise of specialist nurses in other areas – e.g., stroke, traumatic brain injury, MS, pain – and bring these skills and knowledge together to better support people living with Long Covid. Drawing on nursing expertise from different areas should enable us to develop a knowledge base about what is needed for Long Covid. Having this knowledge base should enable us to ensure people with Long Covid are better supported on their journey and receive more appropriate care that meets their specific needs going forward despite the current nursing workforce crisis. 

Author: Alison Twycross PhD RN

Chair - Supporting Healthcare Heroes UK; Editor-in-Chief - Evidence Based Nursing; Former Deputy Dean and Professor of Children’s Nursing

One thought on “A personal perspective of Long Covid: As a patient and a professional”

  1. I am a long COVID MDT nurse who also has had long COVID for 2 yrs. I have to say that as a nurse working in long covid service I find it very frustrating because GPs are referring patients without having carried out bloods, x-rays, up to date medical info and they seem to think because they have referred in to us that they can then wash their hands of patients. We are constantly starting off triaging patients already on a back foot. We are picking up possible cancers, heart problems etc when the GPs should be doing this.
    I must say my GP surgery have been amazing supporting me with my own long covid. Sadly they are in the minority.

Leave a Reply

%d bloggers like this: