Patients with excruciating superbug infections are being failed by the NHS and may be missing out on crucial drugs, a major study has found.
Hard-to-treat infections are on the rise as the bacteria that cause them are becoming increasingly immune to the antibiotics used to treat them, even with repeated courses of the powerful drugs. The World Health Organisation has warned that, by 2050, superbug infections could lead to 10 million deaths across the globe each year.
Now a disturbing report has found that many NHS clinicians have ‘little knowledge or awareness’ of how to tackle these life-changing infections.
The study, published in the medical journal Nature, suggests some clinicians are failing to provide ‘suitable treatments’ due to a lack of knowledge about antibiotic resistance, potentially raising the risk of creating further drug-resistant infections in the NHS.
The researchers from De Montfort University, in Leicester, also found that doctors were ‘dismissive’ of superbug patients, with some even suggesting their suffering was due to hypochondria – forcing patients to turn to the internet for answers on how to manage their condition.
One patient who has experienced poor care at the hands of the NHS is 30-year-old Dannii Haughton from Walsall, who has lived with a drug-resistant urinary tract infection (UTI) for 12 years.
The charity worker says that since the infection began she experiences shooting pains in her bladder and a constant need to pee, but claims clinicians have failed to take her condition seriously and are the reason she is still unwell.
‘I’m in pain every day – it’s like a shadow over my life,’ says Dannii. ‘Painkillers aren’t effective and antibiotics can’t control the infection any more. My UTI meant I had to drop out of university. I lost all my dreams for the future because of it. At times I’ve had dark thoughts because I just want the pain to end.’
Dannii Haughton, 30, from Walsall has lived with a drug-resistant urinary tract infection for 12 years
Dannii, who is engaged to her partner, Alex, says the NHS has no idea how to handle her condition.
‘Practically every interaction with the NHS I’ve had has been shocking,’ she says. ‘Doctors have no interest in learning about antibiotic-resistant infections. In the past I’ve been told by doctors to just ‘get on with it’ and the pain would eventually go away.
‘I run a support group for people with long-term UTIs, and every week we get more and more joining. The NHS is completely unprepared to deal with this and I’m worried about the future for people like myself as these infections become more common.’
The lead researcher behind the study, which tracked nine patients with superbugs, says the NHS must urgently improve the care it provides. ‘Patients with drug-resistant infections often feel let down by the NHS,’ says Dr Ryan Hamilton, associate professor of antimicrobials at at De Montfort. ‘Every year the number of these cases increases, so it’s crucial that the health service trains its staff to support these patients and ensure they get the right care and information.’
Antibiotic-resistant bacteria are responsible for an estimated 10,000 deaths and 100,000 cases of severe illness in the UK every year, and are a growing threat.
Among them are bugs that cause UTIs, tuberculosis and pneumonia. Superbugs are also responsible for debilitating skin infections such as MRSA – one of the most common drug-resistant infections found in NHS hospitals – as well as bone and joint infections.
Drug-resistant sexually transmitted diseases are also becoming ever more prevalent in the UK. There have been more than a dozen cases of so-called super-gonorrhoea, once seen only in Western Pacific and African regions.
The greatest danger of superbugs is that they trigger sepsis – where the immune system overreacts to an infection and starts to attack healthy tissue. Sepsis now kills 48,000 people in the UK every year, a figure which is rising steadily – in 2013 it killed 37,000 people.
In response to this, the NHS has drawn up strict protocols on how to diagnose and treat sepsis – including the stipulation that suspected severe sepsis patients receive antibiotics within an hour.
However, an increasing number of people are developing drug-resistant infections that are not immediately life-threatening but cannot be cleared from the body. These can cause constant pain and mean sufferers have to take antibiotics indefinitely to prevent the infection turning deadly.
Experts say there are very few protocols on how treat these patients and argue that they are being failed by the NHS.
In the new study, funded by Antibiotic Research UK, seven of the participants were women living with UTIs. The two men in the study had skin infections.
‘Whenever these patients would enter hospital, they would be placed in isolation away from other patients to reduce the risk of spreading the infection,’ says Dr Hamilton. ‘Doctors would treat them wearing protective outfits and face masks. But once they left hospital, they go home and interact with people like normal.
‘Many patients felt confused about why these precautions were taken and wondered whether there was a risk of them passing on the bug to their loved ones, but this issue was rarely addressed by their doctors even if asked.’
Patients also said that the confusion over their condition had led to stigma – with friends, family and even doctors avoiding interacting with them for fear of catching the infection. Experts say this outcome is worryingly common.
‘If you live with someone with a drug-resistant infection, then there’s a good chance you may already be carrying the bug,’ says Dr Hamilton. ‘These infections can spread from skin-to-skin contact and then populate the gut. Some people may never get ill as a result of this, but others will.
‘There needs to be much better communication to support these patients. Many of them are living with intense anxiety and have no one to turn to for support.’
Other participants said they had been prescribed inappropriate treatments, such as being offered courses of antibiotics which their infection was already resistant against. Studies have suggested that this can further increase drug-resistance.
Hard-to-treat infections are on the rise as the bacteria that cause them are becoming increasingly immune to the antibiotics used to treat them
Most participants said that, despite their heightened anxiety and pain, most consultations were brief and included little-to-no follow-up information on how to manage their infections. Some even said that there was a ‘lack of compassion’ among doctors, who often put their elongated battle with an infection down to age or suggested that the pain was imagined.
Several patients reported that a lack of NHS care had led them to begin paying for private treatment – even though they could ill afford it as they were not in full-time employment due to their condition. Participants repeatedly expressed anxiety about the future, including about their declining health, limited treatment options and even death. NHS clinicians were usually unable to address these fears.
Another patient who received poor NHS care is Viki Rodgers, 39, from Fleetwood, Lancashire, who has suffered constant bladder infections since 2014.
The mother-of-four’s ordeal began after a car crash damaged her spinal cord, impacting the nerves attached to the bladder. Since then Viki has needed a catheter to allow her to urinate – but this has led to frequent infections. The former care worker, who now requires a wheelchair, has to visit hospital every five weeks.
In the past year she has been admitted to hospital nine times with life-threatening sepsis caused by bladder infections.
While in hospital in 2021 she was also infected with a superbug in her digestive tract, called Clostridium difficile (C. diff), which antibiotics have been unable to clear.
However, despite the severity of her condition, Viki says NHS doctors have failed to take her disease seriously.
‘Every time I’m told conflicting things about my condition,’ she says. ‘My GP doesn’t know anything about antibiotic-resistant infections, so I have to explain it every time I ring up. And hospital doctors don’t know any better – I’m constantly having to fight to be taken seriously, get scans or get them to analyse my infections.
‘I’ve even had to print out every bit of information about my condition so that paramedics know what they’re dealing with when they come to take me to hospital with sepsis.’
She adds: ‘I’d feel safer going to my dog’s vet than this. Every day is a fight to get the things I need to stay alive. All I can hope is that I get to see my eight-year-old twins turn 18. The NHS is not equipped to handle patients like me. There needs to be more specialists in this field.’
According to experts, more education about drug-resistant infections should be given to doctors and nurses in order to combat their spread and ease the misery experienced by thousands of patients.
‘There is a lack of appropriate knowledge and training among healthcare workers about these infections,’ says Dr Cat Anderson, a GP and specialist in urinary tract infections.
‘I regularly hear from patients who say they’ve been in to see their GP with a UTI as many as six times in a year, but that it hasn’t raised alarm bells or led to any new treatment.
‘These patients are still being offered three-day courses of antibiotics which do nothing to combat the infection and only increase the chances of creating bacteria that is even more drug-resistant.
‘All it would take is for GPs to scroll through their patients’ notes and see how many times they’ve presented with one of these infections for them to realise that standard antibiotics treatment is not going to work’.
Dr Anderson adds: ‘I think the fact that so many of these cases are UTIs or other bladder infections means they are not taken seriously, because they are classed as women’s issues rather than a serious national health crisis.’
Dannii Haughton agrees.
‘The way the NHS handled my UTI led to it becoming resistant,’ she says.
‘I was given these short courses of antibiotics over and over again, which didn’t solve anything and probably made my infection more resistant. We need doctors to take this issue seriously – we need them to care.’
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
