Hundreds of children are being forced to delay their education or leave school because of one of the world’s most common infections, ITV News Social Affairs Correspondent Stacey Foster reports
So much of our lives are shaped by education but what happens when you are forced to delay your child’s education or remove them from school because of one of the world’s most common infections?
Lily was due to start in Reception class this week but she’s now staying at home because of a urine infection.
She was diagnosed with a UTI (urinary tract infection) last October after telling her mum that it was “stingy when she went for a wee” but Elaine says the symptoms have never properly gone away.
“Originally we had a three day course of antibiotics… but it just has never cleared,” she said.
“You can tell she’s in agony she holds her breath and she braces herself until it goes its awful to see and I just see how it got to this… I daren’t even walk to the park with her.
“It’s absolutely terrifying. I don’t have anybody to go to.”
Evy, now 15, was the same age as Lily when she first got her UTI. She still has to wait another three years to be eligible for specialist treatment on the NHS.
It got so bad for her that in Year 6 she left mainstream schooling and is now tutored from home.
She told ITV News that she was told-off for needing to go to the toilet outside of lunch or break. Anyone who has ever had a UTI will know that you simply don’t have a choice about that.
“No one has done anything. Why won’t they help me?” Evy said. Her mother, Emma said: “I can’t help her, I can’t get anybody to come on board and give her the treatment that works. It’s just nobody.
"I’ve asked the paediatrician, I’ve asked the urologist, I’ve asked her GP I would take her to the end of the world if I had to and spend every last penny I have to get her what she needs.”
'I would take her to the end of the world if I had to. Spend every last penny to get her what she needs'
Lily and Evy’s parents are among hundreds receiving support from the charity CUTIC which helps adults and children with urine infections that don’t clear with the standard three-day antibiotic treatment course.
In April, ITV News reported on the inaccuracy of the NHS standard “dip-stick” test used to diagnose most acute UTIs which miss four out of ten infections.
Both Lily and Evy’s mother's saw our report and were compelled to get in touch to tell us that there is no specialist facility for treatment for children in the UK.
The LUTS clinic, based at the Whittington Hospital in London, treats chronic UTI infection for adults. However, because it is the only centre of its kind in the UK, there are long waiting lists.
Alison Taylor runs the charity CUTIC which is supporting more than 350 families and hundreds of adults who repeatedly get UTIs but are denied treatment.
She said there are three options available:
Wait until a child is aged 16 and access private treatment
Wait until a child is aged 18 and access NHS treatment
Travel to America to try and access treatment
'They're not only losing their present but also their future because they can't go to school': says Alison Taylor
Dr Hsieh is based at a Children’s Hospital in Washington and told us that he regularly receives contact from UK families.
He said that both the US and UK need to take the condition more seriously.
“I think both of our countries would benefit if children with UTIs were more readily referred to paediatric urologists,” he added.
The National Institute for Health and Care Excellence (NICE) provides recommendations on diagnosing and managing UTIs in babies and children under 16. But they do not specifically address the issues of a chronic infection.
NICE told ITV News that it has prioritised requests for further research around symptoms and signs of long-term (chronic) UTI in the form of their research recommendations, but it could not tell us when research was due to take place.
Bladder Health UK said: “We regularly receive calls from parents with children suffering from urinary tract infection which has become a chronic problem.
"Often the children are unable to attend school on a regular basis and are unable to take part in social activities."
"Their sleep is also impacted. Parents are often at the end of their tether and need clinical advice but Bladder Health UK has nowhere to signpost these parents to as no-one in the UK is treating chronic UTI in children.”
“On a national level, Chronic UTI is acknowledged to exist now by the NHS but there are still no guidelines in place by NICE to assist clinicians when treating it, either for children or for adults.
"The failings in the current system for urine analysis which identifies bacteria and aids treatment decisions are also now widely acknowledged.
"However, the out of date system still remains in place meaning that patients can be given incorrect information and the wrong treatments including over use of antibiotics.”
The NHS does not have specific data relating to how many people are affected by chronic UTI but anecdotally medics point to millions of (mainly) women worldwide.
It is estimated that 10 million women in the UK alone suffer with urine infections and half of all women and girls will experience at least one at some point in their lives.
But families say failing to treat this problem is hugely costly for the NHS and ultimately will result in more lost childhoods.
Support for those living with UTIs is available from a number of organisations, including:
Chronic Urinary Tract Infection Campaign (CUTIC) is a not-for-profit organisation that was founded by a small group of expert patients in 2016. They campaign for better access to treatments and can offer information for patients and links to support groups.
Chronic UTI Global Support runs a Facebook Support Group, which has more than 16,000 worldwide members. People can join for free and gain access to content, including scientific knowledge on the disease and members who share their own personal experiences.
Bladder Health UK is a small, national charity which gives support to people with all forms of cystitis. It has a website and a number of social media platforms with readily available information for anyone in need.
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