Support for people experiencing long COVID symptoms

A compassionate and determined nurse has won a national award for her work as a Long COVID campaigner and advocate for others suffering from the condition.

Kerry Davies from Cumbria, who has been raising awareness of the devastating effects of Long COVID for the last three years, has won a Giving Voice Award from the Royal College of Speech and Language Therapists (RCSLT), for helping to improve the lives of people with speech, language, and communication needs.

The RCSLT Awards recognise the achievements of members and celebrate people who have supported and championed speech and language therapy and made a difference to people’s lives. Since 1945, these awards have recognised leaders at all levels within and outside the profession who have made outstanding contributions to patients and the profession itself.

Kerry a registered nurse of 20 years, said: “I am utterly grateful to have won a Giving Voice Award – it means so much. The name speaks for itself: Giving Voice.”

When Kerry first contracted COVID-19 in March 2020, the acute infection lasted for around two weeks and her symptoms were relatively mild. She recovered and returned to work, but around six weeks later she started developing symptoms again. She remembers going into work one weekend in April 2020 feeling fine and by the Sunday she started to feel unwell again.

Kerry said her most alarming symptom was that she couldn’t speak properly. She would start a conversation and then after several minutes her words would start to become slurred and muddled; it was impossible to have a conversation. To Kerry and her family, it seemed like she’d suffered a stroke or a brain injury.

She said: “I have had an awful time, and I wouldn’t wish it on anyone. There have been a lot of difficulties and challenges in more ways than one. I am determined to speak out about these challenges to enable other people to be supported. If we don’t talk openly, reflect and try to learn and understand, we will never be able to support people”.

Even though there have been negatives, Kerry also discusses the positives: “There are some amazing health professionals and some people who have been incredibly understanding and supportive,” she said.

“The Trust’s Occupational Health Service has been supportive. I was referred in July 2020 and the Occupational Health Consultant, Dr Atkinson, has been amazing. He is a brilliant Consultant, understanding, Empathetic and supportive.”

Alison Brenton, Specialist Respiratory Occupational Therapist and Clinical Lead for the COVID-19 Recovery Service at UHMBT, said: “It is fabulous that Kerry has received an award for the courageous way she has dealt with Long COVID. I’m glad that Kerry’s work has been recognised and validated. Kerry has shown great tenacity, mapping her route through an unknown territory, so that others can find their way.”

Kerry said: “As a trust, we were very fortunate to be commissioned by NHS England to run the Long COVID Network for Nurses and Midwives in England. I’ve been attending since 2021 and was asked to contribute to ‘NHS England Long COVID: A Framework for Nursing, Midwifery and Care Staff’. I was published in a section discussing my lived experience.”

In addition to this, Kerry has made an educational video with Experience of Care Lead, NHS England/NHS Improvement. This was presented to the NHS England Quality Board, the National Midwifery Council (NMC) and included in the new UHMBT Leadership Programme. Kerry continues to use the video on local and national presentations to enable people to understand the impact of Long COVID. Kerry was also recorded in 2021 for The Long COVID E-learning programme on this link.

In January 2021, Kerry met a Professor of Clinical Linguistics who was studying cognitive-linguistic difficulties in Long COVID. She has been part of the professor’s research, including a case study, and has had assessments with her.

“Professor Cummings is incredible and continues to advocate for people with cognitive-linguistic difficulties in Long COVID,” said Kerry.

Professor Cummings said: “From my first contact with Kerry, it was clear that she had considerable insight into Long COVID and its impact on her speech and communication. She has been able to leverage her knowledge to raise awareness of the condition and advocate for improved care for people with Long COVID, and also in terms of employment.”

Kerry explained that she is also now under a private Long Covid specialist, Dr Binita Kane.“I feel very grateful for her validation, support and understanding, and of course for the opportunity of treatment and suggested ways to manage this debilitating condition,”

“I have always tried to be open about this condition and the various symptoms I still have and especially the cognitive communication difficulties that Long COVID has left me with.

“It’s not tiredness. I’m not tired. Tired is when you are sleepy and ready for bed. What I experience is the inability to function at times both physically and cognitively. It’s the blood flow to my brain, and my circulation especially in the upright position. Anyone that is with me for any length of time can appreciate this. This is not always an invisible illness if you want to look hard enough or spend longer with me, but often for many, Long Covid is an invisible illness, and it is very much misunderstood.

“Long COVID stripped me of my life, my health, my career, my social life, at times my ability to speak, communicate and process information. Helping others going through this keeps me going. I want Employers, Health Professionals and Unions to listen, as many people have lost their careers and employment, and many more are about to lose their jobs. There must be thousands of people out there, not being heard, needing support, understanding, flexibility, and adjustments. If we could educate more people about the difficulties, and underlying pathology, then I’m sure the quality of someones life living with this condition would be better supported.”

Kerry is a founding member of Long COVID Nurses and Midwives UK. This is an advocacy group, advocating for nurses and midwives in the UK with Long COVID. Kerry said they are doing some great work and continue to advocate for others. The website has many resources to support others going through the same.

Kerry remains a registered nurse and was placed on the redeployment register this year. This was to facilitate her to find employment that would support her as she was not enabled to return to her previous nursing post. After several challenging months and looking for nursing roles that would put in place the adjustments she needed, she fortunately found herself a team that would facilitate, accommodate and support her to return to work and stay employed. Kerry now works for the South Cumbria Community Respiratory Team in an administration role. They have been supporting Kerry with a buddy system to learn the new role. I am grateful to my new manager Karen and my buddy Anne for allowing me the adjustments I need, and for supporting me with flexibility so this role is sustainable. Kerry said People living with Long Covid, or other long-term conditions should be better supported in this way, We need to support people like this, even within other clinical roles then we will be able to keep people employed, enhance the workforce and rightly support people. Kerry says we must do better both locally and nationally or we will continue to lose valuable members of staff.

“I’m going into my fourth year now and I still have cognitive communication difficulties and many symptoms remain and have never left me. I have had to learn how to manage the condition, make adjustments, accommodate the illness, adapt and use accessibility and aids when necessary. This does not mean someone is better, it does not mean someone is fixed. It means they are trying to live a better life and manage symptoms. This is about learning to live in a different way with a long-term condition.”

Around a year ago, Kerry connected with the RCSLT: “They saw my posts and my open discussions of my cognitive communication difficulties,” she said.

Kerry has spent time raising awareness of the communication difficulties in Long COVID and has made a podcast with the RSCLT on this link. She has signposted people to information and research and became part of their service user involvement group. Kerry has been reviewing their new Long COVID handbook and guidance before consultation and before publication.

Steve Jamieson, Chief Executive of the Royal College of Speech and Language Therapists, said: “Kerry has recently won a Giving Voice Award from the RCSLT for her tireless support for our policy and influencing work on Long COVID.

“Kerry was nominated by members of our Long COVID working group in recognition of her dedicated advocacy for, and awareness-raising of, the impact of Long COVID on people’s communication. This has made a massive difference to our work, both enriching and amplifying our case for better support for people with Long COVID, including through the provision of speech and language therapy for those who need it. We are very grateful for all Kerry has done and continues to do.”

Kerry said “It’s an honour to have won this award because, for me, it’s for everyone else who can’t speak out. Long COVID is isolating, challenging and life changing. It can result in losing your identity, purpose, ability to socialise, physically function and interact appropriately. The person you were is gone. You’re still here, but everything is different.

“I’ve had to find a new me, a stronger me, a more determined me, and that new me won’t stop speaking out for the people who can’t.

“I honestly could write a book of my journey, the ups and downs, the positives and negatives, the learning, the change, the loss, the grief, the isolation, the loneliness, the person I was, the person I now am, the people that have supported me, the ones that haven’t, the judgement, the lack of understanding, but also the amazing Long COVID Community and new friends.

“I will continue to advocate locally and nationally to supports others in any way I can.”

The emergence of Long COVID as a new disease has led to a wide range of research projects looking at ways to support patients living with the condition.

One such project, looking at the potential of a traditional herbal remedy to alleviate symptoms of the condition, is being supported by Morecambe- and Heysham-based Bay Medical Group.

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

GP Susie Hartley, who is part of the research team at Bay Medical Group, said: “We hope that research projects like this will help to find treatments that can help patients to find some relief from the additional symptoms they are experiencing.

“A lot of people think that if they have Long COVID they just have to live with it, but there are treatments and support available and new research being carried out to find new ways of supporting patients.”

The Ayurveda for Promoting Recovery in Long COVID (April) Trial, led by the London School of Hygiene and Tropical Medicine, has been set up to investigate the potential benefits of Ashwagandha, a popular form of traditional Indian ‘Ayurvedic’ medicine, to support Long COVID patients.

Ashwagandha comes from the roots of a plant called ‘Withania somnifera’, and previous studies suggest it might improve vitality and muscle strength, reduce anxiety, and improve sleep. This points to Ashwagandha as a potential therapy to treat common Long COVID symptoms.

Bay Medical Group is assisting with recruitment for the study, which aims to work with up to 2,500 patients who will be given either a course of Ashwagandha or a placebo medication.

Dr Hartley said: “The challenge with Long COVID is that there is a lot of variation in the way patients present with the condition.

“Many have pre-existing long-term conditions that have been exacerbated by COVID. A lot of patients who have Long COVID also have other conditions like fibromyalgia, chronic fatigue syndrome, and mental health conditions.

“Lots of patients say their smell and taste just hasn’t come back after a COVID infection. Some of them say that they get a burnt plastic smell – that's what a lot of them seem to be describing.

“Other patients come in with something else – illnesses like chest infections or coughs – and they’ll say they’ve never been right since they had COVID.

“Vaccination has definitely made a difference to the severity of people’s symptoms, but we still have people with long-term effects of COVID. Often we find that that they come and go as their symptoms improve and then worsen again.”

If you think you may have Long COVID, contact your GP for advice or visit www.yourcovidrecovery.nhs.uk

Patients living in north Lancashire and south Cumbria can also access the University Hospitals of Morecambe Bay NHS Foundation Trust COVID Recovery Service. Ask your GP to refer you via the electronic referral system (ERS) and you will be seen within six weeks.

A hospital consultant who developed Long COVID believes singing and yoga helped her to recover from the condition.

Dr Alison Birtle, an oncologist working at University Hospitals of Morecambe Bay NHS Foundation Trust and Lancashire Teaching Hospitals NHS Foundation Trust, says the two activities helped her to regain control of her breathing after suffering long-term symptoms of COVID.

Alison contracted COVID in January of 2022. Despite receiving a monoclonal antibody infusion to combat the infection, she developed covid complications.

After recovering from the initial infection, Alison experienced brain fog, fatigue, and worsening breathlessness, followed by pain in her chest and left arm.

She was taken to hospital, where tests revealed a series of heart arrythmias leading to a diagnosis of moderate heart failure, COVID asthma and Long COVID. Medication was prescribed to help tackle the symptoms.

Alison said: “I used to feel like Iron Man with his battery removed - after I got COVID it felt like someone had genuinely taken away my battery. I’d be walking and suddenly run out of energy to carry on even if it was just a few steps. 

“I contacted my GP and asked if I could be referred to the Long COVID Recovery Service. Quite quickly after that I had my triage appointment and three remote appointments.

“I think it worked very well. My experience of the Long COVID clinic was very good. They helped me learn to pace myself and not try to do too much.

“The fatigue aspect is hard to manage because you don’t improve with rest, and you also can’t sleep well.

“When you have Long COVID it leaves you with a fixed energy pool that is depleted when you do anything, whether that is work or not. If you talk to a friend or read a book that depletes the pool and can stop you from doing other things. Once the pool is empty that is it.”

Alongside the advice and guidance from the Long COVID Recovery Service, Alison found that her passion for singing helped her to improve her breathing.

In summer of 2022 she was sufficiently recovered to sing with West End stars Alfie Boe and Sarah Brightman as part of the NHS Voices of Care Choir on a charity recording of the national anthem to mark the Queen’s platinum jubilee – and since then singing has helped her to continue her recovery.

She said: “Sometimes I’d feel breathless and realise I’d forgotten to breathe normally. COVID can have that effect, and you tend to breathe through your mouth not your nose.

“I’m sure that singing has made a big difference to my recovery. Doing yoga twice a week also made a massive difference – I genuinely have had to relearn how to breathe again. 

“Until December, on a normal day I would have to choose which tasks I wanted to do – for example whether to do the dishwasher or put the washing on. I wouldn’t have the energy to do both. That fatigue is difficult to manage and also affects your mental health.”

A year and a half on from her COVID infection, Alison says she now feels much more like her old self thanks to a combination of medication, guidance and support, and the positive impact of her singing and yoga activities.

She said: “It's only when you get better that you realise how ill you were. Everything has taken all this time to get better.”

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

If you think you may have Long COVID, contact your GP for advice or visit www.yourcovidrecovery.nhs.uk

Specialist Respiratory Occupational Therapist Alison Brenton has seen the impact of Long COVID at first hand through working with patients living with the condition.

Alison leads the University Hospitals of Morecambe Bay NHS Foundation Trust COVID Recovery Service, which has supported hundreds of patients since it was launched in 2020.

The service acts as a ‘one stop shop’, with a multidisciplinary team helping patients to manage their symptoms and recover, as well as providing support and advocacy for those who need it.

Alison said: “Increasingly, we do a lot of vocational rehabilitation, working with individuals looking at how to mitigate their symptoms and return to the work environment.

“That might include writing a Health and Work Report suggesting measures to facilitate a return to the work place, such as different shift patterns, additional rest periods, longer phased returns or gaps between screen time etc.

“For those who can’t get back to work, it might be supporting people to apply to retire early on health grounds, or exploring an alternative occupation.

“The majority of our patients are aged 30 to 60 – people of working age – which is why we have such a vocational focus.”

Patients are referred to the Recovery Service via their GP if their COVID symptoms last longer than 12 weeks.

They are assessed by the service within six weeks of referral, and start treatment immediately afterwards.

Alison said: “During the triage and assessment we decide who is most appropriate to work with each patient, although each clinician has a holistic focus - assessing their physical, psychological and mental health symptoms and understanding the impact of these conditions on daily life. For example, people may see our nurse, physiotherapist or occupational therapists, or be discussed with the doctor at our Multi-Disciplinary Team meeting before referral for further clinical investigations.

“It is important to rule out alternative causes for symptoms as well as investigating the physical impact of the virus.”

Taking things one step at a time and not trying to rush recovery is key for many patients.

Alison said: “A lot of it is teaching self-management of symptoms, such as breathlessness, brain-fog and fatigue. We help people to find their baseline.

“If patients who have fatigue push themselves too hard, they can end up with their recovery going backwards, which impacts on function and quality of life.”

As well as helping to manage the physical symptoms, the service supports with the mental health aspects of Long COVID, including anxiety and depression.

Alison said: “Experiencing COVID can be traumatic.

“We do see quite a lot of post-traumatic stress disorder, particularly among patients who were in intensive care during the early days of the pandemic or who worked in front line or public facing roles and caught COVID during the pandemic.”

A big priority for the COVID Recovery team is ensuring that there is awareness of the service.

Alison said: “GPs often think that there is little they can do for Long COVID patients other than advise rest and patience.

“Referring people to our specialist service, means we can support those people who are suffering with Long COVID to regain some quality of life and help support them to get back to activities they enjoy and work.”

If you think you may have Long COVID, contact your GP for advice or visit www.yourcovidrecovery.nhs.uk

An NHS worker who developed Long COVID in 2022 is making progress towards recovery.

Andrea Goodrich, who works for University Hospitals of Morecambe Bay NHS Foundation Trust, was infected with COVID in May 2022 along with several family members.

After several days of feeling unwell was taken to hospital with breathing difficulties, diagnosed with pneumonia and sent home with antibiotics and blood-thinning medication.

Despite recovering from the COVID infection, Andrea continued to suffer symptoms of the condition.

She said: “I was extremely breathless and fatigued. It was like I couldn’t get the air in. I felt like my lungs had shrunk.

“My GP said that the best thing to do was rest.”

Symptoms were still present 12 weeks after the initial infection, and Andrea began receiving support from the UHMBT Long COVID Recovery Service.

Support included installation of handrails in Andrea’s home and raising her sofa to make it easier for her to sit and stand.

She said: “I was getting quite frustrated and impatient with myself. I didn’t leave the house for months because I couldn’t walk anywhere. Then I had a fall and broke my coccyx.

“Things have got a little better since then. I'm trying to do more exercise, but if I push myself too hard I pay for it.

“It’s not just the physical fatigue – it's mental fatigue too. I can’t retain information. That was something I didn’t really notice at the very beginning because I was more focused on my breathing and the feeling that my legs wouldn’t hold me up.

“As I tried to do more day to day things I’ve found it difficult. I feel like I have dementia.”

Before developing Long COVID, Andrea walked and swam regularly, but has struggled to maintain these activities as a result of the condition.

She said: “Before COVID, the only way I can describe my life is that I had 100 spinning plates. Getting COVID and not being able to do the things I used to do has rattled me. I’m trying to get back to how I was before, but I feel like a different person.”

Andrea developed depression as a result of her illness, and was prescribed antidepressants as part of her treatment.

She said: “Looking back to when I first got COVID, I’ve come a long, long way, but I’ve still got a long way to go. I may never get back to the way I was.

“I’m aiming to get back my physical fitness, but also my mental fitness. 

“I try to look at the positives, but sometimes it’s very difficult. It’s bad now, but it’s not as bad as it was months ago. Nothing will ever beat me.”

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

Yes. Long COVID remains a relatively new condition and research has an important role to play to:

• Improve the understanding of the long-term effects of COVID
• Identify how to effectively manage and support people with Long COVID
• Understand the experiences of those living with Long COVID symptoms
• How particular medicines and vaccines impact on Long COVID

Work is also being undertaken by the Office of National Statistics to provide regular updates on the estimated number of people self-reporting ongoing symptoms following COVID.

The National Institute for Health and Care Research (NIHR) has awarded more than £50 million to new research studies to help improve understanding of long COVID, from diagnosis and treatment through to rehabilitation and recovery.

There is more information on the NIHR website.

In addition to the NIHR funded studies, other long COVID research studies have started both in the UK and internationally. Findings from these studies are also used to inform how we care for people with Long COVID in England.

If you are interested in taking part in Long COVID research, see Be Part of Research where you can review all the Long COVID studies.

In England, research studies also recruit participants from the post-COVID services that have been set up to offer care and support to people with Long COVID.

In England, guidance on the treatment, management and support for people with Long COVID is provided by the National Institute for Health and Care Excellence (NICE). The guidance and advice is evidence-based and aims to ensure all healthcare professionals use it to provide safe and effective care.

NICE also monitors ongoing research to evaluate whether new treatments being studied via clinical trials should be used in the care of patients.

Latest evidence regarding treatments which are effective for Long COVID is also shared with the clinical community via various communication routes.