The growing crisis of long sepsis. It leaves sufferers with fatigue and brain fog - so when will the NHS start treating it properly?
Fitness instructor and mother of three Katie Tinkler remembers calling, 'See you later', to her 16-year-old daughter, Isobel, as she was stretchered into an ambulance — having collapsed on the bathroom floor at home one Saturday morning.
But Katie wouldn't make it home later, nor return in time to shepherd Isobel through her GCSEs the following week.
In fact, soon after she was blue-lighted to hospital, Katie was put into an induced coma, from which she wouldn't emerge for three weeks.
All that time, her life hung in the balance as her body battled the effects of sepsis — a life-threatening condition that occurs when the immune system overreacts to an infection; in Katie's case, pneumonia.
Katie Tinkler developed sepsis seven years ago and is still living with the effects
Super-fit Katie was rushed to hospital where she was put into an induced coma, from which she wouldn't emerge for three weeks
Four days before her collapse, 'superfit' Katie, who had been teaching 13 fitness classes a week, visited her GP with 'shivering, bad muscle aches and just a general feeling of being unwell'.
'The GP told me to go home and drink Lucozade,' she says and, reassured, she did. It's advice she wishes she'd ignored.
Not only as she might then have avoided spending three months in hospital, but also because Katie, like thousands of others in the UK, still suffers life-changing after-effects — known as post-sepsis syndrome — seven years on.
The syndrome causes long-term effects that can be physical (from profound fatigue and joint or muscle pain, to hair and tooth loss); to cognitive (such as brain fog and memory problems); and psychological (with sleeping problems, flashbacks and nightmares not uncommon).
The UK Sepsis Trust says post-sepsis syndrome affects about 40 per cent of survivors, or 80,000 people a year. In some people, the symptoms linger for six to 18 months. Others, like Katie, suffer for much longer.
'Physically and mentally, I am a changed person,' she says. 'I used to be constantly on the go. I was the life of the party and would sign up for any charity triathlon going.
'Holidays involved skiing or coasteering. Now all that has stopped. All I can do is walk, at a slow, frustrating pace for everyone else.' She also lives with permanent fatigue and bad brain fog.
The UK Sepsis Trust is calling for those affected by post-sepsis syndrome to have access to the kind of rehabilitation available to people with long Covid.
Sepsis can have a swift and devastating impact on anyone, whatever their fitness. 'The way one doctor described it to me was that it was as if a nuclear bomb of inflammation had gone off in my body,' says Katie.
It was her husband Simon, 53, a management consultant, who called an ambulance when he found Katie lapsing in and out of consciousness on the bathroom floor of their Surrey home one Saturday morning in May 2017.
She recalls: 'In hospital, I wasn't expected to survive the day as my organs were shutting down.'
About 245,000 people a year in the UK develop sepsis. It's triggered by an infection, typically a chest or urinary tract infection. Infants, older people or those with conditions such as diabetes, which make them more susceptible to infections, are most at risk.
But 'it can affect anyone, it's entirely indiscriminate', says Dr Ron Daniels, an intensive care consultant at University Hospitals Birmingham NHS Trust and CEO of The UK Sepsis Trust.
With sepsis, the immune system attacks not just the invading bugs but also the body's own tissues, producing chemicals called cytokines that trigger widespread inflammation.
Untreated, this can progress into septic shock — where blood flow to the extremities drops as the body fights to maintain blood supply to vital organs and blood pressure plummets. In its early stages, it can cause shivering, aches 'and can be mistaken for flu', says Dr Daniels.
Early detection is vital. Every hour of delay in diagnosis increases the risk of dying from sepsis by one to 2 per cent, The UK Sepsis Trust estimates.
In the UK, five people an hour die from it. Yet prompt treatment with intravenous antibiotics —and fluid to raise blood pressure — can be life-saving.
Former MP Craig Mackinlay, 57, was given a rousing welcome when he returned to Parliament in May, having lost his hands and feet after developing sepsis in September last year
The symptoms of post-sepsis syndrome are thought to be due to the after-effects of inflammation and reduced blood flow to certain regions that the sepsis causes
But the after-effects that survivors encounter can be life-changing. Former MP Craig Mackinlay, 57, was given a rousing welcome when he returned to Parliament in May, having lost his hands and feet after developing sepsis in September last year.
He also suffered tissue damage to his gums, leaving him with loose teeth, and to his ears and face.
Craig decided to stand down as an MP partly, he said, as 'it would be difficult to sustain 70 to 80-hour working weeks which were the norm prior to my illness'.
But post-sepsis syndrome is affecting more and more people as sepsis becomes increasingly common. This is partly due to an ageing population. But it is also because of the march of antibiotic-resistant bacteria, meaning infections can linger, giving more opportunity for sepsis to strike.
'The symptoms of post-sepsis syndrome are thought to be due to the after-effects of inflammation and reduced blood flow to certain regions that the sepsis causes,' says Dr Daniels.
'For example, reduced blood flow to the hair follicles may lead to hair loss. Sepsis can also be associated with changes in the immune system that last for years afterwards, [so] people are at increased risk of infections. That may be because there is an autoimmune element to sepsis, so the immune system is then primed to react abnormally.'
One in three sepsis patients is readmitted to hospital with an infection within 90 days of being discharged, according to a study published in the journal Critical Care Medicine in 2015.
'Post-sepsis syndrome can be utterly debilitating,' says Dr Daniels. 'The brain fog alone can be severe enough to make it difficult for someone to return to work.' In fact, some people want post-sepsis syndrome to be renamed 'long sepsis' — to try to draw attention to how debilitating it can be, he explains.
Indeed, a review published in the Infection and Drug Resistance journal last year highlighted 'many similarities' between the symptoms of post-sepsis syndrome and long Covid. It said: 'This raises the question whether these should be considered separate entities, or whether they represent the same condition.'
But whereas there are more than 100 clinics designated to treat long Covid patients in England, which are staffed by occupational health therapists, physiotherapists and specialist nurses, no such service exists for those with post-sepsis syndrome.
Dr Daniels says: 'Usually, the best that happens is that a well-meaning nurse invites patients who have survived sepsis to come along on a Saturday morning to talk through how they are doing, but it's not enough.
'We have seen a lot of resources devoted to people who survived Covid but developed long-term problems. But not for those who survive sepsis. It seems an injustice that those who survive one bug get the help they need, but those who survive another don't.'
Ideally, there would be similar clinics providing different services for those with post-sepsis syndrome, he adds.
Dr Daniels says: 'It is a complicated picture as the needs vary according to the individual. Some need counselling, others physiotherapy or dietary advice [as the breakdown of tissues that can occur during sepsis means patients require a high-protein diet, for instance]. But, at the moment, there is nothing for them. They have to fend pretty much on their own.'
After Katie was brought out of her coma — which had reduced oxygen demand around the body, so protecting her organs — she had to learn to talk, eat and walk again. She left hospital barely able to care for herself. 'I got two at-home physio visits and that was it,' she says.
Katie left hospital barely able to care for herself. She had to learn to talk, eat and walk again
Friends raised almost £1,000 to fund 12 private physio sessions and Simon took three months off work to care for her. 'For a long time, I was only able to do the school run in my pyjamas, without getting out of the car, and had to go straight back to bed when I got home,' Katie says.
Alongside everything else, she has developed heart and kidney problems from the sepsis which need regular monitoring. She has been admitted to hospital 'about 20 times' since 2017, each time with a different infection. One last year resulted in her little finger being amputated.
But her biggest fear is developing sepsis again — the risk of this rises slightly once you have had it. 'Last time I was strong, this time I'm not sure I could fight it off,' she says.
To avoid infections that might trigger it, family holidays tend to be car-based rather than taking flights. And friends know not to visit 'if they have even a cold'.
Katie celebrated her 50th birthday with a party and is determined to make the best of what she has. But there is no sugarcoating what her life has become. 'I have good days and bad,' she says. 'Friends have learnt that while I would love to accept their invitation to a get-together, I cannot predict if I will be well enough to get there.
'When I left hospital I thought, 'Great, I don't have sepsis.' But all these years on, its effects are still with me.'
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