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As with sepsis, for many people the after-effects of COVID-19 will require long-term support
At the start of the COVID-19 pandemic, it was expected that patients who reached intensive care would need help to breathe, hence the rush to procure ventilators. In the event, however, many needed a lot more than that. A significant percentage had heart problems, required haemodialysis to keep their kidneys working, and developed devastating blood clots and multi-organ failure.
Nursing Standard. 35, 10, 54-56. doi: 10.7748/ns.35.10.54.s19
Published: 30 September 2020
In fact, the response looked a lot like sepsis; the immune system’s overreaction to an infection or injury where it attacks the body’s own organs and tissues.
‘COVID-19 is an infection and it affects all of the organs,’ says Nicki Credland, chair of the British Association of Critical Care Nurses (BACCN).
‘At the beginning we thought it was going to be a primary lung problem, that only affected patients’ ability to breathe independently, but we’ve realised that it affects lots of different organs, not just the lungs, in much the same way that sepsis does.’
The similarities between the two don’t stop when the patient leaves hospital.
There is growing recognition that some people with COVID-19 take a long time to recover, and that after-effects, such as extreme fatigue, are common to the two conditions, leading to a need for long-term support. According to UK Sepsis Trust executive director Ron Daniels, the links have significance on a number of levels.
It means that people who have been seriously ill with COVID-19 should be aware they may have a heightened risk of developing sepsis within the next year. More positively, it means the knowledge of sepsis – and recovery from sepsis – that has been built up over the years can be put to good use in helping people who have survived COVID-19.
‘In academic nursing and medical communities, people were sceptical about saying there was a link and they were trying to persuade themselves that COVID-19 was in some way unique,’ says Dr Daniels, who is also a consultant in intensive care in Birmingham.
‘Now when we’re saying it to non-academic front-line staff, they’re just so bloody relieved that finally they can accept that, yes, this is a sepsis response to a virus.
‘In the early days of COVID-19, whether you were a nursing student, a medical student or a consultant, you were scared. You didn’t know what you were dealing with and patients were coming in thick and fast, and you were firefighting, trying to manage.
‘But when you had a lot of patients in intensive care, they were all progressing in similar ways, but some suddenly started to die quite quickly of multi-organ failure. It became evident that the mode of death was sepsis – they were behaving identically to patients with sepsis.’
The evidence base for a link between sepsis and COVID-19 is building, Dr Daniels says, pointing out that the Global Sepsis Alliance reported in April that based on the scientific data available, it could ‘more definitely state that COVID-19 did indeed cause sepsis’.
The BACCN’s Ms Credland, who is also a senior lecturer and head of the department for paramedical, perioperative and advanced practice at Hull University, says there are similarities and differences in nursing people with severe COVID-19 and those with sepsis.
‘The way that patients react to COVID and sepsis is that ultimately they end up in a similar position, in that they end up in multi-organ failure requiring significant intensive care support,’ she says.
‘Their hearts don’t work properly, their lungs don’t work properly, the ability for their blood to clot doesn’t work properly, there’s a neurological impact. There’s a huge raft of different things that COVID creates that we didn’t understand when we first saw it back in January, February.’
However, there is an important difference from how sepsis would normally be dealt with, she adds.
‘The main nursing difference with COVID is the fact that it is so highly contagious,’ she says.
‘If you’ve got a patient with sepsis, who, say, picked up a skin infection: they were doing some gardening and pricked their finger and that finger became infected and that led to sepsis, the nursing responsibility in intensive care would be to manage that multi-organ failure.
‘The difference with COVID is that you’ll have to do that wearing personal protective equipment.’
UK Sepsis Trust lead support nurse Larry Matthews is heading a small team that provides support – including through a telephone helpline – to people affected by sepsis, including survivors and their families, as well as those who have lost loved ones to the condition.
Educate yourself ‘There are lots of resources on the internet so I’d advise nurses to educate themselves on post-COVID-19 recovery – what does it look like and what are the common problems,’ says UK Sepsis Trust’s Larry Matthews.
‘The important thing is that patients and nurses are aware and know what the important signs are, and when to ask the question “could it be sepsis?”. Patients recovering should have that information to hand. It needs to be delivered in a balanced way – you don’t want to scare people.’
Educate your patients ‘The difficulty is what do you tell people when they’re about to be discharged home. How much do you tell them about how things might be?’ Mr Matthews says.
‘What we tend to do is explain the possibilities: that recovery is variable – some people might have uncomplicated and speedy recoveries, but a lot of people will be tired and weak, they may not think as clearly as they normally would do, and this may go on for weeks or perhaps months.’
Signpost help and support Find out if there are post-COVID-19 clinics in your organisation, Mr Matthews says. ‘You can signpost patients to the UK Sepsis Trust helpline, or give them information about the UK Sepsis Trust – we’re happy to talk to anyone recovering with COVID-19, because the skills and knowledge that we have supporting people with sepsis are so transferable.’
‘We are getting people calling who have had COVID,’ he says.
‘The problems they experience are similar. The crucial things are extreme fatigue – the post-viral fatigue that COVID patients get is remarkably similar to the fatigue that people get post-sepsis. The cognitive functions that people are experiencing are similar, so problems with short-term memory, difficulty concentrating, and sometimes a problem with fluency, remembering words when speaking.
‘The difference is that the problem for many COVID-19 survivors is severe breathlessness. There are also people who are having cardiovascular problems, such as tachycardia – quite a few people seem to be getting this, a bit like POTS (postural orthostatic tachycardia syndrome), having sudden surges in heart rate.’
When John Biddle went to the Cheltenham Festival on 13 March, all he was planning was a good day at the races.
But less than two weeks later he was on a ventilator in hospital and his wife Chris had been told to prepare for the worst.
Mr Biddle, pictured below, had contracted COVID-19 and its impact was devastating. He had blood clots, a bleed on the brain, kidney problems, heart problems and sepsis.
Within two days of being admitted to Bristol Royal Infirmary, he was transferred to London’s Royal Brompton Hospital, where he was kept alive on an extracorporeal membrane oxygenation machine and dialysis.
‘They told me he had sepsis and the blood clots as well as COVID, and so it was all stacked against him,’ says Ms Biddle.
Mr Biddle spent eight weeks in hospital, including one week in a rehabilitation unit. Although he was discharged in May, he is by no means recovered. As well as gangrene on his fingers and one toe, he has extreme fatigue and walking short distances leaves him breathless.
More help needed with my recovery at home
He was ‘clapped’ out of intensive care, which felt emotional, he says, but understood it was not the end of his journey.
‘I knew it was going to be a long route to full recovery,’ he says. ‘I could only walk about 50 yards before getting out of breath. Each day, I’ve been going a little bit further – I did 8,000 steps one day.’
‘My hand’s swollen with the gangrene and I can’t use a knife and fork properly,’ he adds.
The couple feel that there hasn’t been the follow-up from health services that they would have liked. Mr Biddle has been referred for physiotherapy but that was because of a problem with his pre-existing arthritis.
‘The GP has been good,’ he says. ‘And the nurses in hospital were fantastic, they were brilliant. They phoned Chris every day. But the aftercare, now that I’m out, has been a bit lacking. It’s worrying.’
The difficulty is knowing what is ‘normal’ as part of recovery, and when to seek help. ‘We’re fortunate that people bring up things that we’re used to giving advice on, such as fatigue, anxiety, insomnia, and managing pain,’ Mr Matthews says.
‘The nurses in hospital were fantastic, they were brilliant. But the aftercare has been a bit lacking’
John Biddle, COVID-19 patient
‘The other thing is about validation of how people are. A lot of people, especially those who weren’t admitted to hospital, were being labelled as over-anxious, and that perhaps some symptoms were health anxiety or imagined. That is so common post-sepsis as well.’
Dr Daniels says there are other similarities between COVID-19 and sepsis, in the long-term recovery process.
‘We’re hearing of the long-haulers with COVID-19 and that’s of no surprise to those of us who have been looking after people with sepsis for years, because it’s exactly the same,’ he says.
‘We know that of people who survive sepsis, 40% have one or more of cognitive, physical or psychological after-effects at one year. These people are going to need support, they’re going to need to be listened to, to be connected with people who can empathise, perhaps from their own peer group. They’re going to need signposting to physiotherapy, to counselling, to online self-help resources whether they’ve had COVID-19 or sepsis.’
About 20% of people who survive sepsis end up back in hospital within the next 12 months with another infection, Dr Daniels says, so people recovering from COVID-19 should also be told what to look out for in case they too develop a further infection.
‘The patients have been at death’s door, they’ve got all these after-effects, they’ve lost weeks of their lives, they’ve got no clue what’s happened to them,’ he says. ‘Normally we ask families to keep a relatives’ diary to fill in the gaps for their loved ones, but of course no-one’s been able to do that.’
The BACCN’s Ms Credland says COVID-19 has shone a light on what was already known about the impact of being in intensive care.
‘Everyone thinks that after you go home from intensive care that’s it – you are better, job done,’ she says. ‘COVID-19 shows that simply is not the case.’
‘Those of us that work in critical care and with sepsis have highlighted for many years that there is a significant amount of issues in patients who have needed intensive care admission for lots of reasons – sepsis being one of them and COVID-19 now being another – that will need continued follow-up and that will have lots of problems after intensive care, psychological and physical.’