At 72 years old, Deidre Winnett has travelled the globe, having visited 37 countries and even climbing to base camp in the Himalayas. But when COVID-19 first struck her in 2021, her world drastically changed. Since then, she’s contracted the virus six times, leaving her with debilitating long COVID, with symptoms including breathlessness, extreme fatigue, and limb numbness.

At her worst, she could barely walk to the bathroom without feeling exhausted. The woman who once explored the world found herself unable to leave the house or meet friends and family. “I felt like I had nothing to give,” she recalled, “even the thought of getting dressed was overwhelming.” 

Deidre’s GP referred her to the NELFT long COVID service, which provides holistic assessments and tailored treatment programs for people like her.

The service became a lifeline to Deidre. The service provided a supportive environment where she could connect with others experiencing similar challenges. This peer connection was crucial in improving her mental health, helping her feel less isolated. She also learned specialised breathing techniques to help manage her symptoms when they became intense and frightening.

Today, she feels stronger and more hopeful than she has in years. Looking ahead, she is excited to be planning a trip to Thailand in April to watch her son het married, something she thought was impossible a couple of years ago. “This time last year, I couldn’t have imagined such a milestone, the long-COVID team have given me my life back.”

Jane Clark, Physiotherapy Clinical Lead said:  

“We’ve seen how the services’ interventions can make a huge difference in managing symptoms. Long COVID affects everyone differently, and our role is to provide tailored tools and strategies to help people regain their independence and quality of life. Seeing Deidre progress from struggling to walk short distances to preparing to travel again next year has been incredibly rewarding.”

Nicola, 46 and a mum of two from Havering, recalls her experience of having Long COVID following her initial COVID diagnosis in September 2020.

“After the initial set of symptoms, I was ill for ten days. But after the infectious period had passed, the symptoms started to affect me more and more and some even persist today. Although I wasn’t infectious ten days after the initial Covid diagnosis, I had a temperature every day which lasted for nine months, which was odd. The doctors thought it may be my immune system fighting the range of symptoms I was experiencing.” 

Her other symptoms included extreme fatigue, disturbed sleep, joint and muscle pain, brain fog, breathing and gastric issues:

“I noticed I couldn’t function well enough on a day-to-day basis. I remember my driving being very erratic and I didn’t feel my responses were quick enough. For example, I remember at the traffic lights, as they turned green, it wouldn’t register in my mind that I should go. I’d usually class myself as fit and well yet my health was having an impact on my family life too.”

As a mum, Nicola also recalls the impact it was having on her children:

“The kids suffered too because we weren’t able to do the joint activities we loved so much…so they missed out too.”

Nicola, who works in a school recalls the impact it had on her job:

“My employer was very accommodating and they referred me to the Occupational Health team after I’d been signed off sick. I haven’t been able to go back to teaching full time so I now do three days per week in a desk-based role. However, I still feel anxious about my symptoms and am continuing to wear a mask at school.”

She speaks highly of the support she received from the NHS:

“Although I wasn’t hospitalised with COVID, I did get good support from my GP over the telephone who was sympathetic. I was referred to the Long Covid Clinic at King George Hospital in March 2021 and was seen in May. Following an initial consultation with the doctor I was referred to an occupational therapist and a physiotherapist, both of whom were great! They both visited me every few weeks and the physiotherapist also referred me to exercise classes which I’ve recently started.”

Nicola was also referred to online Cognitive Behavioural Therapy (CBT) for the anxiety she was suffering from, through Talking Therapies. She still suffers from some nerve damage in her back and the brain fog is still there. Generally, she feels her symptoms, including her sleep patterns are improving, albeit gradually.

Patient X (who wishes to remain anonymous), a retired teacher and mum of three from Hornchurch, recalls her experience of Long COVID and her journey to recovery.

“I became ill on 26 December 2020, together with many other members of my family. I recall feeling unwell and although I had no cough or cold symptoms, I just felt out of it. After testing positive for COVID, the initial set of symptoms lasted for around two weeks.”

Recalling her experience, she says:

“Things really came to a head two weeks after that diagnosis, when my family had to call for an ambulance. Looking back, they told me that I just didn’t look right and had become unresponsive and was making ‘grunting’ noises. I also remember passing more water than I usually would. After being transferred to Queen's Hospital in Romford, the NHS staff looking after me told me I had low blood oxygen and I was in hospital for two weeks under the care of the various NHS staff who looked after me. I came very close to being put on a CPAP machine. (A CPAP machine delivers a stream of oxygenated air into your airways through a mask and a tube.)''

Her symptoms began to slowly improve and shorty after she was transferred to a COVID ward, where her oxygen levels slowly began to recover. Since being discharged from hospital, many of the symptoms have persisted and she was formally diagnosed with Long COVID by her GP. Long COVID is diagnosed when symptoms from a COVID infection continue after 12 weeks and cannot be explained by an alternative diagnosis. Symptoms can vary a lot, fluctuate over time and may have an impact on your ability to do your day-to-day activities. She says that she is around 85% back to her usual pre-COVID self.

“Ever since I was diagnosed with COVID, even today I am not fully recovered. I’ve had issues with my memory and brain fog and can’t remember the times my family visited me in hospital, despite being awake and responsive. I also get tired easily and suffer from fatigue. My day to day has changed I would say. I can’t do things I used to do like going to the park for the day or going on shopping trips. My family also gets annoyed sometimes because I repeat myself in conversations as I forget the details of chats we’ve already had. I’ve had a good experience of the Long COVID clinic and feel honoured to have been able to access these services. Initially, I had 2 or 3 telephone consultations with the doctor, followed up by care from the occupation therapist and the physiotherapist team which has helped. The occupational therapy in particular has been the helpful as it’s taught me to pace myself and they provided me with mental health support. I have also been referred to the NHS gym membership programme and hope to continue with this so I can I feel stronger.”

The below story is featured on the Queen's Nursing Institute website, focused on Queen's Nurse Salli Pilcher sharing her personal experience with Long COVID. Pilcher describes contracting COVID-19 in March 2020 and struggling with persistent symptoms for over 18 months. She discusses her journey of learning to live with the condition and adapting her life around it.

"I would like to send my thanks the team, for all the valuable support, encouragement and advice you have given over the past ten weeks. The calm and patient delivery of every session has relaxed us and given us the confidence to look to the future in a positive light and I am sure all future courses will be beneficial to those who partake. Again my thanks."

"Thank  you so much for all your help with everything, I can't thank you enough."

"Many thanks again for the interesting course and useful information."

"Many thanks for everything. Its very insightful when somebody else looks at me holistically!  A ll points you mention are duly noted and actually, I've been doing more of this (slowing, energy levels, taking small breaks etc) lately, which are helping. Thanks for your support. In terms of those involved, for me personally your intervention has been the most beneficial."

"I was very nervous when I accepted this referral (Referral to Redbridge Exercise on Referral as step down care from the Long COVID Service) as previously when I had ME (Myalgic encephalomyelitis) I was told to go down the gym and work it off. I started on very low levels and have worked my way through some levels.  Not quite Olympic level yet. I think it has helped me physically but also mentally and now look forward to going.  Not solved my Long Covid but has helped and improved my abilities. Just wanted to say thank you from someone who was dubious it would help."

"All in all things have improved for me. Still a bit up and down but learning to go with the feelings and rest when I need to. The long covid team has taught me so much. I'm not worrying so much when my heart starts racing, when I am overcome with fatigue, aches and pains around my body. I am definitely coping better and taking time out, giving myself more time to get things done, asking for help and not being afraid to say no. I am so grateful for all your help so far ."

"A heartfelt thanks to ‘an incredible team, who are so kind, patient, passionate and really care for the patients’!"

"Thank you so much for the Living with app its amazing."

"The support I have received has been totally life changing for me. I have been able to do improve my daily living with a bit more ease and using the techniques and advice. I plan to continue this after the course."

"Very informative and helpful, all staff involved were great."

"The online group was supportive and motivating. Good that you didn't feel alone and isolated."

"A great help to my well-being."

"Regular contact. So helpful and listen to everything. Most of all the people I have spoken to have been very supportive."

"Everyone is professional in their manner and have empathy and a great understanding of what we patients are going through with Long Covid."

"I found the group really helpful, both the information on the subject, the strategies and hearing from others who struggle with the condition."

"The support and direction is motivating to get into good habits of the treatment programme."

"Excellent session on breathing patterns helped me with looking at how I breathe and implications for the whole body."

"I found both times I spoke with someone they were patient and showed empathy. This has made me feel confident I will gain from the service when I start the group work."

"The long Covid group sessions have been interesting and informative, thank you."

"Giving very clear advice and tips to manage symptoms fatigue.Also monitoring our breathing pattern.Very knowledgeable and empathy for long covid patient."

"Lots of detail and practical advice. Friendly and caring staff who were always there to go over issues and practical advice."

"The time between referral from GP and the first call was very quick and informative."