The effect of long Covid on 3 Lancashire women

They say improvements to some elements of the NHS’s post-Covid services and increased support from their fellow citizens would make a big difference in helping them to cope with what remains a poorly understood condition, whose symptoms number more than 200 and can continue indefinitely after an initial Covid infection.

That list of post-viral problems is regularly topped by debilitating physical fatigue and a lack of concentration and memory characterised as ‘brain fog’. However, it can include a plethora of other complaints – including shortness of breath, joint pain and headaches.

The only truly unifying feature of the 1.9 million estimated cases of Long Covid in the UK last year is its ability to ruin the lives of those who catch the virus – but never recover.

The head of the World Health Organisation, Tedros Adhanom Ghebreyesus, warned 12 months ago that the1 in 10 infections believed to lead to Long Covid suggests “hundreds of millions of people will need longer-term care” across the globe in the years to come.

While the number of lives being ended by Covid has significantly reduced – although not been eliminated – compared to the earlier part of the pandemic, its capacity to upend life seemingly knows no bounds.

Now, a trio of Lancashire patients have spoken to the Local Democracy Reporting Service (LDRS) to mark Long Covid Awareness Day, explaining what the condition has stolen from them – and outlining the support they need to make the best of the lives they have been left with.

MIRIAM, Preston 

Miriam, who did not want to give her full name, was a frontline NHS worker before the onset of the pandemic and fell pregnant shortly before it struck.  Early fears about how Covid might affect pregnant women and their unborn children resulted in her spending most of her pregnancy in isolation.

Not long after her daughter turned one – and at the height of the first Omicron wave in January 2022, the new mum caught Covid. 

Her recovery from the initial infection was far from complete when she returned to work, leaving her particularly vulnerable to the effects of contracting it again – which she unfortunately did just five months later, after a single day back in her hospital job.

Two years on, and her second brush with Covid has left her unable to work and in need of a walking stick – at the age of just 35.

“We went to the zoo just before Christmas and I ended up having to rent a scooter because I couldn’t walk.  And that’s what I’m having to look at now as a permanent thing – if I am going to go out, I might need to hire a scooter to get about.

“As well as my mobility and breathlessness, it has been the fatigue, more than anything. 

"That’s terrible because you want to do stuff, but you just physically can’t move to do it,” Miriam explained.

As well as the practical problems that poses, it has also robbed her of something particularly precious – and irretrievable.

“There have been many times when my baby girl has been poorly and I could hear her crying, but couldn’t get up to get to her.

“I actually don’t remember much of my daughter being a toddler – and I’m never going to get that back. Plus, we didn’t go and do half of what I’d love to have been able to do with her.

“My husband has been a Godsend – he’s a daddy and has also [basically] been my carer at times, when I have been unable [to look after myself].

“I’m not as bad as I was, but still nowhere near [normal] – and I might never be that way again because of damage to my organs. So it’s just taking one day at a time – and you can’t really look forward to many things, because if you have a flare-up, you’re in trouble,” Miriam says.

For that reason, she says, the most important thing for people with Long Covid is getting access to the health services that are on offer.  

While she has enjoyed the support of her GP, she knows many Long Covid sufferers are not so fortunate.

“A lot of people struggle even getting to that point – they are not listened to and are dismissed, so you are up against a massive hill from the start.”

Miriam says that the physio team who have looked after her at a Long Covid clinic has been “fantastic” – and even arranged mobility aids for her home.  But she says continued investment in research for the best way to help people in her situation is vital – as well as the support of society at large.

“People want to have normality and ignore problems unless it affects them directly – and that’s normal human behaviour. But that’s why I think it’s really important to have the awareness day for Long Covid.

“Just remember that everyone’s got their own story and everyone is struggling with their own stuff – so if you see someone struggling, help. And just be kind.”

MELANIE, Ormskirk

Fifty-three-year old Melanie had to give up her job as a part-time church administrator after contracting Covid more than three years ago. She never recovered and although she initially tried to recapture the life she had previously lived, her condition has steadily deteriorated – to the point at which she was left largely housebound.

“My life has literally just stopped,” Melanie told the LDRS. 

“It sounds very dramatic [to say], but it feels like you’re slowly dying.

“Before Covid I was, like most people, running [at] 110 percent.  I pushed myself and pushed myself after the first infection – and then I can only describe it as my body just crashing.

“I can remember saying to my boss I was going to have to leave work early – it felt like I was drunk, I was staggering and really scared.

“A year later I started to develop neurological symptoms – and I have gone further downhill since.

“But last October, I caught Covid again and I was really frightened, because I couldn’t find my baseline.  If I got in the shower. I would just have to lie in bed and have a sleep afterwards.

“I emailed my physio at the Long Covid clinic and my GP and I said, ‘I’m housebound, my next step back [is being] bedbound – [and] you need to help stop me getting there.”

Melanie says the main thing she feels has been missing from her care is a single doctor overseeing it.  NHS England commissioning guidance for post-Covid services states that they should be centred around multi-disciplinary teams (MDTs), which bring together specialist medical, nursing and other health professionals, with “clinical leadership from a doctor with the relevant skills and experience”.

“I have been really lucky – I’m still under a Long Covid clinic and when I first was diagnosed, [they arranged] cognitive behavioural therapy and I went on an online course for how to live with a long term disability.  That does help, because you have had your world turned upside down.

“They’re doing as much as they can, but at the end of the day, [they] phone me every couple of months and ask if there is anything [they] can do.   I did ask if they could refer me to a multidisciplinary team that was led by a doctor, but they weren’t any.

“Now I’m waiting to be seen privately by a doctor in Liverpool,” Melanie said.

ALISSA, Preston

Before catching Covid in January 2022, Alissa was what she describes as “the perfect example of someone young, fit and healthy”.

Sadly, the virus changed all that – just two weeks before she was due to start a new job in an events team.

Now just 24, Alissa – who did manage to take up her job, which she is still doing four days a week – says she developed Long Covid “and it just never went away”.

“For me, it’s the fatigue – if I do too much, my body just crashes . There is also muscle pain, joint pain, dizziness and a lot of cognitive [issues] – brain fog being the main one and concentration [problems].

“Last year, I did have a big crash [when] everything caught up [with] me – [and] my mobility and cognitive function have definitely plummeted since.

“Pushing through has had an effect and made things worse than – but I didn’t know any better,” Alissa added.

Apart from her ongoing condition, her biggest frustration is the way in which the therapeutic support she is receiving is all under one roof – but any medical help she needs is fragmented and often delayed.

“Within the Long Covid clinic in Preston, it’s nice, because they have a physio, dietitian, occupational therapist – and they all talk to each other [about you].

“But if there is a problem that requires a doctor, you get referred back to your GP – and that’s where it gets [complicated].   There was one point at which I was on four different waiting lists for four different specialists – [who] don’t talk to each other.

“I had an initial cardiology appointment last summer and testing done in September, but I’m still waiting for an actual treatment plan, because I can’t get a follow-up appointment,” Alissa explained.

WHAT DOES THE NHS SAY?

Responsibility for post-Covid services will have shifted from a national level to the NHS’s regional integrated care boards (ICBs) by the end of the month.

A spokesperson for the Lancashire and South Cumbria ICB said:  ““The Long Covid clinics are provided by multi-disciplinary teams, which include nursing, physiotherapy, occupational therapy, respiratory support [and]  psychological support – and cover the full ICB area.

“The teams cover: Morecambe Bay, including south Lakeland, the Fylde Coast, Central Lancashire, East Lancashire, including Blackburn with Darwen, and West Lancashire.  All can be accessed by referral by GP.”

NHS England referred the LDRS to the ICB when approached for comment.

WHAT DOES THE GOVERNMENT SAY?

A Department of Health and Social Care spokesperson said: “Long Covid can have a debilitating impact on people’s physical and mental health, that’s why we have backed our world-leading scientists with over £50 million to better understand it and identify new treatments.

 “NHS England has also invested £314 million to expand treatment and rehabilitation services, establishing 100 long Covid services for adults and 13 specialist paediatric hubs for children and young people.”

HOW TO GET HELP

Anyone who is concerned about long-lasting symptoms after having had Covid should contact their GP.

The Long Covid Support group website also has advice and information – www.longcovid.org

Other support is available in Lancashire via Brain Health Breakthrough CIC.