Support for people experiencing long COVID symptoms

Long COVID patient Kerry Davies has still not recovered after initially developing COVID-19 in March 2020.

Kerry, a nurse at University Hospitals of Morecambe Bay NHS Foundation Trust, has experienced a range of symptoms during her illness, the most significant of which has been the impact on her cognition and speech.

In the early stages she was left unable to communicate properly in terms of reading, writing and speaking. Although she has made progress, long conversations and physical activity can still drain her cognitive abilities, resulting in slurred speech, blending of words and eventually difficulty forming sentences.

Three years on from her initial infection, Kerry has had to learn to manage her condition and is keen to increase awareness and understanding of long COVID.

She said: “Long COVID is such a massive subject, and there are more than 200 symptoms of the condition.

“What I'm experiencing may not be the same as what someone else is going through, and what’s helping me may not help everyone. I’ve made some improvements compared to 2020, but I’ve had to adapt my life to manage my symptoms. Sadly, many people with long COVID aren’t making any progress. I just want to support others with long COVID.”

Kerry initially started with symptoms of COVID-19 in March 2020. Instead of the classic symptoms of temperature, cough, and loss of taste and smell, she started with a headache followed by rashes and brain fog.

She said: “Before I had COVID I had an excellent sickness record. I was fit, running three times a week, and going hill walking. I had no significant health concerns. I was a busy person.

“Around six weeks after my initial infection I developed all the original symptoms again and more – including temperatures, body rashes, no sense of taste, tinnitus, low oxygen saturations, tachycardia, brain fog, fatigue and many other symptoms. By the end of May, I couldn’t speak properly - I was stuttering, stammering, and getting stuck on words. The cognitive difficulties were severe and debilitating.”

Eventually, Kerry contacted the UHMBT Occupational Health team, and was told to ring NHS 111 service and then to A&E.

Over the following months Kerry was told by various different health professionals that her symptoms were due to the way her immune system had responded to the virus.

She was supported by many health professionals and advised to rest and pace to help her recover her cognitive abilities. Sleep, meditation and pacing have become important ways for Kerry to prepare for and recover from activities that require mental or physical exertion.

Help and understanding from UHMBT Occupational Health Consultant Dr Phil Atkinson also made a big difference.

Kerry said: “If it wasn’t for Dr Atkinson, I wouldn’t have got through this. He is so understanding and supportive. He referred me to the long COVID team, who helped me learn to pace my life.

“They also set me up on a training app designed for people recovering from brain injury. The app helps with memory, language and mental agility.”

Additional support has come from NHS and private respiratory consultant Dr Binita Kane, who prescribed additional medication to improve Kerry’s blood flow.

Dr Kane began investigating the causes of long COVID after her daughter developed the condition, and has been working to raise awareness of the condition and improve treatment.

She said: “There are a number of syndromes associated with long COVID that are not new - we have known about them for decades through other post-viral illnesses. However, awareness amongst healthcare professionals is poor as there is a knowledge and education gap.

“Kerry's main symptom was the problem with her speech. A simple bed-side examination demonstrated that this was caused by her body’s inability to get blood to the brain in an upright position.

“The rehab therapy route is important, but we also need medical treatment of the underlying illness – you need a joined-up approach.”

Kerry has also taken part in research with Louise Cummings, a Professor of Clinical Linguistics at the Hong Kong Polytechnic University. The research has now been published. Kerry completed two large assessments that revealed language difficulties related to cognitive-communication difficulties. She continues to keep in touch with Professor Cummings and is grateful for her ongoing support.

Throughout her illness Kerry has been keen to spread awareness of long COVID to help others during their recovery journey. She is an active member of Morecambe Bay’s national long COVID network for nurses and midwives in the UK. Kerry has helped to produce many educational resources for long COVID. She has been published in ‘Long COVID: A Framework for Nursing Midwifery and Care Staff’.

She also featured in an e-learning section on long COVID, and was helped to create a separate video which has been presented nationally at various conferences and training events and has been used as part of the UHMBT leadership programme. Her most recent project has been a podcast for the Royal College of speech and Language Therapists.

Kerry is not yet back to her previous nursing role, and does not know at this moment in time what the future holds for her.

She said: “I hope that with my new understanding and lived experience along with my passion for advocacy, I can continue to support to others going through this.”

Many doctors will go their entire career without seeing a new illness emerge and develop in front of them.

Occupational Health Consultant Dr Phil Atkinson has had this experience twice since early 2020, first encountering COVID-19 as it rapidly became pandemic and then supporting patients with the previously unknown condition of long COVID.

He said: “While information on COVID infection, its symptoms and treatment, were available there was nothing published at all about long COVID to start with. The only way a doctor can learn about a new illness is to listen to the patients who have it in this circumstance.

“The first patient I spoke to with long COVID was probably April 2020, many months before the COVID hubs or networks were set up to provide support. In the absence of support elsewhere listening, advising where possible and being sympathetic were the only tools available to me.

“Of course, I did not only speak to one patient with long COVID, I spoke to many, and like any other illness it varies in severity. While its symptoms are probably indistinguishable from chronic fatigue syndrome, for which there is no treatment at all and which does not normally get better, what stood out from near the start was that many of these patients were getting better.

“This allowed me to translate experience from patients at the milder end of the spectrum to the patients at the more severe end enabling me to give them hope that they would recover completely from this illness. This has been the pattern ever since, some patients are getting better extremely slowly, some more rapidly, all are making progress when asked if they can do more this week than they could do in a week two or three months ago.”

Slowing down and avoiding trying to rush recovery has been the key for Phil’s patients, employing a similar rehabilitation approach used following chemotherapy.

He said: “While we know of no treatment for long COVID we do know how to advise patients who are easily fatigued and have very limited supplies of energy, this is for them to use pacing techniques, to find a baseline of activity not worsening their symptoms. Once they have found this baseline they can then very slowly start to increase activities.

“A slow measured increase in activity works, in my experience all patients improve, many have got completely better, and I see no reason why the others will not as well.”

Another key has been giving hope and encouragement to patients throughout their recovery.

Phil said: “Most patients, when I first spoke to them, were convinced they would never get better, being told that they would, with patience, has diverted most of the patients I have spoken to from the inevitable depression which would occur otherwise.

“As judged by the number of "thank you’s" I have had, this appears to be a successful approach, which is very satisfying.

"With the passage of time, it is now becoming apparent that a small subset of patients are not likely to make a complete recovery. They are typified by those with a severe cognitive deficit (very severe brain fog). I would emphasise this is a small, but very important minority.

“However, it is at last looking as though there are early signs that there are some relatively simple treatments that may improve symptoms in this group. These are improvements worth having though, and hopefully over the next year or so this picture will start to become clearer."

A nurse who has worked in the NHS since 1976 remains unable to return to work nearly three years after her initial COVID-19 infection, but is seeing improvements in her condition.

Colette Barnes-Davis, now 64 years old, contracted COVID-19 in April 2020.

She said: “I was off work for about five weeks, I then started to improve and went back to work part time (two days per week) in May and worked for two weeks.

“After I came off each shift I would fall asleep for hours, well into the next day. But I just thought that was just me getting over a virus, and that was going to be it.

“I’d only done four shifts, then one morning, this being a back-to-back shift, I started to feel unwell.

I felt exhausted from having walked from my home to the hospital changing rooms, which takes about 15 minutes. I walked up the stairs and my vision started to go.

“Once I got into the department, I couldn't remember the staff members’ names. I was short of breath. My vision had gone, it was all blurry and I just felt very unwell, and I was exhausted. I phoned for my husband to collect me because I couldn't have walked home. Because I had no energy left, I went to bed and slept for about two weeks.”

Colette developed further symptoms including joint and muscle pain and lack of concentration. She initially was not worried about her condition, as she had heard of others going back to work too soon after a COVID infection. There was a gradual improvement over the next few months.

But in August 2020, she had a relapse. This time Colette’s speech was affected – she was struggling to find words and had slowness of speech.

An MRI and blood tests revealed no problems.

Colette said: “After this relapse what I discovered was that I had a lot of visual processing information issues. I couldn't read more than a paragraph, I couldn't write, couldn't use a screen in a normal mode. All these problems were new. Watching TV and turning pages over quickly in a recipe book was draining my energy, as the changing colours and shapes of the pictures required processing of this information. When I was a passenger in the car, I had to look down rather than look out of a window because the changing of the scenery outside the window was making me tired.”

In time, Colette started to see signs of recovery.

She said: “In November 2021 I got my creative and imaginative thought back - which was weird because I didn’t even know I'd lost it. But I woke up one morning with a load of noise in my head and ideas and thoughts.

“The increase in cognitive ability appeared to bring about my second relapse. Although I now had creative thought, I was struggling to get out of bed, I had lost all my physical energy, and I was sleeping more. Everything was an effort - going downstairs, making a cup of tea, I was worn out.

Now, I am picking up again and doing a few more bits and pieces. I'm doing about 20 minutes yoga at home or I can do a very mild dance routine. Dancing motivates me - it helps my mental health.

“This illness is really isolating because you've got no energy to go out anywhere to do anything. Since I first got Covid, I haven’t really gone outside of the house more than once or twice a month.

“From what I did previously, I’ve had to scale back massively. My life has changed compared to what it was - I have grandchildren and I just used to look after them, but I can't do that now. Driving is obviously out. I was just full power all the time and then this, it is just so frustrating.”

A nurse who contracted COVID-19 at the start of the pandemic has had to make big changes to her working life as she continues to recover from long COVID.

At the start of the COVID-19 pandemic, Emily* was a front-line NHS worker.

As a very fit and healthy 24-year-old health care professional, she was aware how COVID-19 could affect individuals – but she was not concerned for her own health.

Emily was a very active, healthy young woman who enjoyed going to the gym six times a week and had a very full social life alongside her full-time job.

In April 2020, Emily contracted COVID-19, and was still experiencing symptoms after four weeks. In contact with other colleagues who had contracted the illness at the same time, she realised that she was one of a few who was not getting better.

At this early stage of the pandemic, long COVID was not recognised or understood, and Emily was left alone to struggle and manage her constant illness. With fast heart rates, rashes all over her body, head aches, blurred vision, chest pains and severe fatigue which meant she couldn’t get out of bed, Emily’s life closed in and she was confined to her bedroom to rest and recover alone. When she could get out of bed, she was unable to walk more than 10 metres.

Rest and patience have been the key to making progress, although the illness has also had huge impact on her mental health.

Nearly two years on from when Emily caught COVID-19, she was able to return to work part time.

Whilst working still in the NHS, her role is very different. Unable to stand for longer than half an hour, Emily has moved to a desk-based role.

Although she still suffers from long COVID, the debilitating effects are lessening and Emily’s patience and resolve to get better have enabled her to slowly reclaim her old life.

*The staff member prefers to remain anonymous, and her name has been changed for this case study.

Clare Hill has seen the impact of long COVID at first hand over the last two years.

Clare, the Occupational Health and Wellbeing Clinical Lead & Matron at University Hospitals of Morecambe Bay NHS Foundation Trust, has been supporting colleagues experiencing long COVID symptoms since early in the pandemic, and working to develop coordinated care to aid their recovery.

She said: “Because long COVID is a new condition, we have had to learn quickly about the best way to support patients and assist them in their recovery.

“Anyone experiencing symptoms three months after their COVID-19 infection is considered to have long COVID.

“The condition is challenging because there are more than 200 recorded symptoms and every case presents differently. We find that the symptoms come in peaks and troughs, with patients appearing to recover and then relapsing.”

Treating patients holistically on a case-by-case basis has been the key to success.

Clare said: “Rather than see patients be referred to service after service, the aim is to recognise that the symptoms patients are experiencing could be long COVID and putting together a package of care that meets their needs.

“People do not need to have tested positive for COVID-19 to be referred to the rehabilitation services – we want to ensure that support is there for people who may have developed long COVID symptoms after an asymptomatic COVID-19 infection.”

Long COVID symptoms often include fatigue, shortness of breath and cognitive dysfunction as well as other less common issues such as rashes, nausea and muscle aches.

The variety of problems caused by the condition can make it difficult to recognise.

Clare said: “We really want to get this on the radar of health care professionals – if they meet a patient with these symptoms, we want them to ask themselves ‘could this be long COVID?’

“We want patients who believe they have long COVID to be believed and for the care that they access to support every aspect of their recovery.”

A national long COVID framework for nurses, midwives and care staff has been published to provide an overview of the condition and support patient care.

There is more information about long COVID and how to access support at www.yourcovidrecovery.nhs.uk

Bus driver Steve Trainor is learning to run again after COVID, thanks to the help of the University Hospitals of Morecambe Bay NHS Foundation Trust Pulmonary Rehab Team.

Steve, 62, from Morecambe, was a regular 5K runner until he caught COVID-19 in November 2020.

He has been recovering from long COVID symptoms since his illness.

Steve said: “I had been in and out of consciousness all weekend, and finally on the Tuesday my wife decided to call an ambulance. I remember being in the ambulance and wondering if it was the last time I would see my house.

“I was in hospital for a week on oxygen – I didn’t need to be put on a ventilator but it was close. The staff let me go home when I was able to walk unaided.”

Steve had been active all his life, running regularly and playing lacrosse and badminton at a high level in his younger days.

He said: “After I got COVID I could hardly walk, and I thought I wouldn’t be able to do anything ever again.”

Steve was well enough to go back to work three months after his illness and was later contacted by the Pulmonary Rehab Team.

The team put him on a course at the Morecambe Football Club stadium, where he learned breathing techniques and took part in a variety of exercises to help his recovery.

As a result, he ran his first half-kilometre and started working up to longer distances.

UHMBT also put in touch with a mental health charity which helped him work through the emotional impact of his condition.

He said: “12 months ago I had given up all hope of running again. The pulmonary team has pushed me and now I know I can do it again.

“My advice to anyone is that there’s help there – don't give up.”

‘Long COVID’ is the informal name given to ‘Post-COVID-19 syndrome’.

The National Institute for Clinical Excellence (NICE) defines Post-COVID-19 syndrome as:

"Signs and symptoms continue or develop after acute COVID-19, continue for more than 4 weeks, and are not explained by an alternative diagnosis.

• It includes both ongoing symptomatic COVID-19 (from 4-12 weeks) and post-COVID-19 syndrome (12 weeks or more).
• Long COVID may consist of a number of distinct syndromes, which can include post-ICU syndrome, post-viral fatigue syndrome, long-term COVID syndrome, and permanent organ damage."

• Acute COVID-19: Signs and symptoms of COVID‑19 for up to 4 weeks
• Ongoing symptomatic COVID-19: Signs and symptoms of COVID‑19 from 4 weeks up to 12 weeks
• Post-COVID-19 syndrome: Signs and symptoms that develop during or after an infection consistent with COVID‑19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

The NICE definition states that symptoms after acute COVID-19 are highly variable and wide ranging. The most commonly reported symptoms include (but are not limited to):

Respiratory symptoms

• Breathlessness
• Cough

Cardiovascular symptoms

• Chest tightness
• Chest pain
• Palpitations

Generalised symptoms

• Fatigue
• Fever
• Pain

Neurological symptoms

• Cognitive impairment (‘brain fog’, loss of concentration or memory issues)
• Headache
• Sleep disturbance
• Peripheral neuropathy symptoms (pins and needles and numbness)
• Dizziness
• Delirium (in older populations)
• Mobility impairment
• Visual disturbance

Gastrointestinal symptoms

• Abdominal pain
• Nausea and vomiting
• Diarrhoea
• Weight loss and reduced appetite

Musculoskeletal symptoms

• Joint pain
• Muscle pain

Ear, nose and throat symptoms

• Tinnitus
• Earache
• Sore throat
• Dizziness
• Loss of taste and/or smell
• Nasal congestion

Dermatological symptoms

• Skin rashes
• Hair loss

Psychological/psychiatric symptoms

• Symptoms of depression
• Symptoms of anxiety
• Symptoms of post-traumatic stress disorder

The following symptoms and signs are less commonly reported in children and young people than in adults:

• Shortness of breath
• Persistent cough
• Pain on breathing
• Palpitations
• Variations in heart rate
• Chest pain

This varies from patient to patient. Symptoms may develop following initial recovery from COVID, or persist from the initial illness. Symptoms may also fluctuate or relapse over time.

Data gathered by the Office for National Statistics shows that an estimated 2.2 million people in private households in the UK (3.4% of the population) were experiencing self-reported long COVID (symptoms continuing for more than four weeks after the first suspected COVID-19 infection that were not explained by something else) as of November 2022.

Long COVID can affect anyone who has had COVID-19, even those considered ‘fit and healthy’.

However, research funded by the National Institute for Health Research and UK Research and Innovation shows that groups at higher risk include:

• Women
• People aged 50-60
• People with poor pre-pandemic mental or physical health

If you think you’re suffering with long COVID you should contact your GP practice for advice. They will find out more about your symptoms and arrange for you to speak to an appropriate healthcare professional

More information is available on the ‘Your COVID Recovery’ website, an online rehab service providing advice and support to those living with Long COVID. Thousands of people have used this online hub since it launched.

A high number of long Covid patients report psychiatric and psychological symptoms, including sleep disorders and mood changes. Mood changes may be primary symptoms, or secondary changes relating “being unwell” or the feeling that their COVID-19 illness will “never end”.

Data from the Office for National Statistics indicates that receiving two doses of a COVID-19 vaccine before infection was associated with a 41% decrease in the likelihood of reporting long COVID symptoms, relative to being unvaccinated when infected, in adults aged 18 to 69 years.

With more than 230 symptoms identified and the common pattern of recovery and relapse, there is no single treatment for long COVID.

Adopting a holistic approach is crucial to ensuring the person, their families and unpaid carers get the right support, at the right time and by the right person.

Rather than treating individual symptoms in isolation, the focus is on providing a single point of support to help the patient manage their condition.

The NHS announced a five-point plan for its approach to long COVID:

• Provide advice for clinicians and information for patients on treatment of long COVID
• Provide Post-COVID Services
• Development of the ‘Your COVID Recovery’ online rehabilitation support platform
• Working with the National Institute of Health Research to support studies to advance understanding of long COVID
• Establishment of the NHS Long COVID Taskforce, which includes people with lived experience of long COVID, NHS staff and researchers

A number of multidisciplinary networks have been established to include Nurses and Midwives in this work and these include:

• The long COVID Network - NHS Futures platform for clinicians: With more than 850 members, this network supports collective learning and sharing of best practice by bringing together individuals from across England as well as highlighting key emerging evidence, data, national guidance, education and training offers to support collaboration across systems who are supporting those with Long COVID.
• Post-COVID Regional Clinical network: This network supports the dissemination of updates from a local, regional and national perceptive across England in addition to providing a platform to share on-going challenges and opportunities that are presenting themselves as part of supporting people with Long COVID.
• National Voices and Asthma UK/British Lung Foundation Voluntary, Community and Social Enterprise sector (VCSE) networks: Commissioned to support engagement across the VCSE sector and with communities more likely to be impacted by health inequalities.  In December 2021, NHS England commissioned two nursing and midwifery professional networks for long Covid: Morecambe Bay Hospitals NHS Foundation Trust – Nursing and Midwifery long Covid Network. This network brings together a range of registered nurses and midwives from across England, offering them a space to work through the impacts of long COVID, whether personal or professional, and where their voice that will be heard. The Queen’s Nursing Institutes long COVID Expert Advisory Group brings together nurses working in the community to improve care and increase understanding about the physical, mental and emotional effects of long COVID.

The networks have been created to collaborate on a number of key areas including: 

• Assessment, treatment and ongoing management for those with long COVID
• Development of evidence and research bases
• Support for NHS workers with long COVID
• Support for communities and families
• Education, training and support offers for those working with long COVID patients
• Health inequalities and the impact upon disadvantaged and marginalised groups

A review by the UK Health Security Agency has indicated that people who are fully vaccinated against COVID-19 are significantly less likely to develop long COVID.

Although legal restrictions around COVID have now been lifted, here are still steps you can take to reduce the risk of catching COVID-19:

• Let fresh air in if meeting indoors, or meet outside
• Consider wearing a face covering in crowded, enclosed space
• Wash your hands regularly

There is information on the NHS website on what to do to prevent spreading the virus to others if you have COVID-19 or symptoms of COVID-19.

In December 2021 the NHS England and NHS Improvement Nursing Directorate commissioned a number of professional networks to support engagement with a range of nursing and midwifery colleagues from across England. The networks were created to collaborate on a number of key areas including: 

• Assessment, treatment and ongoing management for those with long COVID
• Development of evidence and research bases
• Support for NHS workers with long COVID
• Support for communities and families
• Education, training and support offers for those working with long COVID patients
• Health inequalities and the impact upon disadvantaged and marginalised groups