‘An estimated 2.0 million people living in private households in the UK (3.1 per cent of the population) were experiencing self-reported long Covid (symptoms continuing for more than four weeks after the first suspected Coronavirus (Covid-19) infection that were not explained by something else) as of May 1, 2022’.

This is the result of the Office for National Statistics’ (ONS) Covid-19 Infection Survey and is a figure that has been rapidly increasing post-pandemic; in February 2022 the figure was 1.5 million, rising to 1.7 million in March.

The most common symptom reported as part of individuals’ experience is fatigue, followed by shortness of breath, a cough and muscle ache. If you check the NHS website for further information there is a much longer list of possible symptoms that many people have been suffering for more than a year after their first infection of Covid-19.

A family I know has been hugely affected by long Covid symptoms that are impacting their lives by seriously restricting their ability to carry out day-to-day activities. Their search for suitable support and rehabilitation has so far been a long and laborious one, with little or no effective results. As it seems likely, given the ONS statistics, that the figures of self-reported cases will continue to rise as we learn to live with this disease, where can we turn for help?

Beneficiary Support

Luckily for most of FIRE’s readers, The Fire Fighters Charity is one organisation that is ahead of the game when it comes to long Covid. Seeing the impact that ongoing symptoms have had on their beneficiaries since the pandemic began, the charity launched its Covid Recovery Programme in 2021: a service provided specifically for Fire and Rescue Service personnel who are still struggling with long-term symptoms following a Covid-19 infection.

One of the beneficiaries who was included in the initial pilot programme, and subsequently invited back three months later for further review, is South Wales Fire and Rescue Service (SWFRS) Leadership Team Control Room Manager Beverley Woodman. Beverley has worked in joint fire and police control in South Wales for 28 years and loves working with people and the variety that each day brings to the job.

Beverley Woodman

In April 2020, Beverley was advised to go for a Covid-19 test when her husband suspected he might have caught the virus on a course he was delivering. South Wales Fire and Rescue Service prioritised Beverley because she was a front-line worker based in a busy control room with 60 people, so she went along for a test with her husband to rule out the possibility, even though she did not have any symptoms. Unexpectedly, Beverley tested positive, and her husband was negative.

Although Beverley had no symptoms and felt fine, she was advised to take complete rest until the end of her quarantine period. She says: “It was a frightening experience because [Covid-19] was new and unknown. I don’t think it was good for anybody, mentally, who got it, because we didn’t know the outcome.” Beverley looked after herself, resting plenty and eating healthily. Feeling relieved that she’d had an easy time of it amid so much uncertainty, she returned to work feeling fit and well.

A few months later, Beverley started to experience some unsettling symptoms: “It was just as if I’d been knocked down. Fatigue was out the window, I was aching, and it just got worse and worse. My breathing got really bad and I couldn’t walk far. I was testing negative at this point so I had no idea what was happening to me.”

Beverley was able to work from home while experiencing these worsening symptoms, which enabled her to manage work and monitor her health without exhausting herself any more than necessary. She coped like this for a while until the symptoms became too severe, and her mental health was also beginning to suffer because she didn’t understand what was happening to her. “My GP was amazing and suggested it might be long Covid, but she didn’t know enough about it at the time to be certain.”

Beverley was advised to rest as much as possible, and meanwhile her GP arranged blood tests and a chest x-ray to rule out any other possibilities. The tests all came back with normal results, and Beverley’s GP advised she repeat them again six months later. Even though she was being well monitored, with no specific long Covid support in Wales at the time, Beverley felt at a loss.

Soon after, following an occupational health referral through SWFRS, Beverley was contacted by The Fire Fighters Charity to tell her about the new pilot programme they were running for long Covid support, and to invite her to take part in the five day residential course at Marine Court in Littlehampton, one of the charity’s three nationwide centres. Beverley was so relieved that she cried down the phone.

Beverley was asked to complete a questionnaire and have some routine medical checks, but it transpired that her blood pressure was high. This was a condition that would not allow her entry onto the programme. “I was so upset; I was desperate to take part.” Beverley discussed it with her GP who monitored her blood pressure for a period of time until she was happy that it was stable, and then she informed the charity that Beverley was safe to attend.

The pilot programme was from Monday to Friday, and Beverley described it as “quite intense!” She experienced a unique service tailored to her individual needs, and at the same time she met other people who were experiencing their own version of long Covid, giving her the opportunity to share her experience. “Although there were some massive differences [in symptoms], we all suffered.”

The toolkits offered by the charity are designed to support both physical and psychological symptoms of long Covid. Beverley says: “We were all different. Some people needed more psychological support, but we didn’t know we needed it until they started talking to us and we did the workshops.”

Beverley attended different workshops, including managing sleep, boosting memory and learning breathing techniques. Exercise and healthy eating were also incorporated into the programme. She says: “When I came back my husband thought he had a new wife! It was amazing!”

Positive Feedback

Three months later the pilot group were invited back to Marine Court to review their progress. By this time, Beverley was experiencing a new symptom of joint pain in her legs that was making it difficult for her to walk easily, so when she returned to the programme, her individual package was adapted to include physiotherapy, as well as continuing with the psychological and symptom management workshops.

The success of the initial pilot has led to the programme now being widely available to all fire and rescue personnel. A video on The Fire Fighters Charity website gives some insight into what is offered by following a group of beneficiaries on their programme. Their experiences of Covid-19 range from mild to “terrifying”, and they describe some of the subsequent symptoms of long Covid as: “frustration, depression and emotional turmoil”, “pure delirium – not being able to string a sentence together”, “unable to take a full breath”, “rapid heart rate and body aches”, “tinnitus, shakes and dizzy spells” and “unable to sleep or concentrate”.

Peter Raistrick is a physiotherapist who works on the programme. He says: “We try and give everybody a set of tools to help them manage the condition as best they can; knowledge, skills, techniques, all of those things that they can then employ when they leave… The whole philosophy is that we treat people as individuals.”

Exercise therapist Craig Williamson, who also works on the programme, says: “We have a thorough assessment programme at the beginning of the week, and we can really tailor the programme to [the beneficiary’s] needs.”

All of the beneficiaries on the video express how much they learned from the programme, and how their increased knowledge and the comfort of sharing their experiences will help them manage the condition going forward.

There is still so much that is unknown about long Covid and how it can be treated. This is why it is so essential to have support systems in place for sufferers of the condition to share their experiences and learn how to manage the symptoms. Beverley, although much improved since before the programme, is still experiencing the symptoms of long Covid, only now she better equipped to cope.

When she returned home from the second residential programme, she took some time off work to reflect on all she had learned and come to terms with managing her symptoms. “It comes to a point where you carry on, carry on, carry on, then you hit a wall, which I had done, so I took the time off that I needed for myself, which I didn’t do in the beginning.”

Managing After Covid

Today, Beverley is back at work and spends two days a week in the office and the rest of the time working from home, allowing her time to manage her energy levels appropriately. “My breathing is a lot better now, but I can’t stand or walk for more than 30 minutes. I do try though; my GP says it’s not good for me not to do anything. I know my limits now because otherwise my legs become very painful, and then I can’t sleep.

“It’s hard to describe the tiredness and fatigue – that’s on another level. I come back from a day in work and I can’t do anything else. Don’t expect me to make food, I literally have a bath and get into my pjs!

“It’s been over two years now and I’ve learned to live with it and adapt. I couldn’t have managed it without [The Fire Fighters Charity]. They’re always on the end of a phone if I need them; I know they’re there… The first six months at home, I didn’t know anybody else that had it. I was so tired and I felt like nobody else understood. But sharing our experiences [on the programme], the psychological support, the exercise app and the toolkits for brain fog, memory and breathing exercises – I still use them all now, and I’m breathing much better.”

Connect to the Charity

Beverley’s advice to anyone who might be experiencing symptoms like the ones discussed here is to reach out: “If you’ve got connections to The Fire Fighters Charity then go, because there’s something there for everybody. Even if you’re only suffering one symptom, like brain fog, you can still get something out of the workshops, it’s just amazing.”

The charity welcomes enquiries from all Fire and Rescue Service personnel if they have concerns: “Our assessment practitioner team initially take the time to chat with our beneficiaries to understand their needs and what support we can offer. For some this may be remote support through our digital programme, for others a stay at the centre may be appropriate. For those who we feel we can support through our Covid Recovery Programme, beneficiaries are welcomed for the five-day stay.”

If you would like more information about the symptoms of long Covid, visit: www.nhs.uk/conditions/coronavirus-covid-19/ and if The Fire Fighters Charity programme is something that interests you, contact them on: 0800 3898820 to see how they can support you.