Women are being forced to travel hundreds of miles and spend thousands of pounds to access treatment for chronic urinary tract infections (UTIs), as there are no specialist centres in Ireland or the devolved nations.
One woman, from the Republic of Ireland, told i she spends €3,000 (£2,630) per year to travel nearly 300 miles from her home in Dublin to access specialist treatment for her chronic UTI in London.
Lynda Spain, 55, was left housebound by the debilitating condition but said she was pushed around the Irish health system for years with doctors dismissing and even misdiagnosing her.
In 2019, she took a flight to London to see a private specialist. They tested her urine and diagnosed her with an infection before putting her on a treatment programme.
Patients from countries abroad usually must find a GP in their home country, who is willing to work with the clinic Ms Spain visited in London.
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Specialists say the infection, which often begins as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall and become difficult to treat with short courses of antibiotics.
The illness can affect women, men, children and the elderly, and can leave them bedbound, feeling suicidal, and unable to work, sleep, leave the house or socialise with their friends and family. A recent first-of-its-kind peer-reviewed paper written by expert doctors and scientists warned that patients are waiting for up to 12 years to be diagnosed.
There are a limited number of specialists in England, including just one NHS clinic run by the Whittington Hospital in north London.
Dr Rajvinder Khasriya, an NHS consultant urogynaecologist at the Whittington, said: “We’re the only [NHS] tertiary centre in the UK which deals with chronic urinary tract infection.
“We see our patients every three months at least, they have access to us by email, we monitor their bloods every three months so we look at the liver function and the kidney function because antibiotics can actually disrupt your liver function so we need to keep a close eye on that.
“We serve about 1,600 active patients, we’re having about 70 consultations a week, we’ve got three consultants, we’ve got the equivalent of two fellows, nursing staff, so it’s quite a big undertaking, but that’s what’s necessary to deliver this treatment.
“You can then see how difficult that is to replicate because it requires a lot of resources. Currently, the waiting list is quite long, unfortunately, it’s between six to nine months. We’re actually working quite hard to do extra clinics.”
Patients are often given a longer course of antibiotics that can sometimes last for more than a year until their infection is cleared and have fresh urine samples examined under a microscope for signs of the infection.
Patients are also travelling for treatment in England from Scotland and Wales and countries abroad such as Spain and Sweden.
People travelling from countries outside of the UK do not have access to the NHS, meaning they are instead spending thousands of pounds on private treatment, while also travelling hundreds of miles away from home.
Ms Spain said she has spent around €9000 so far on travelling from Dublin to London for treatment since 2020 – including flights, accommodation, consultant’s fees, taxis and food.
She is now paying for her daughter, who has also been attending the London clinic after developing a chronic UTI herself.
Ms Spain first started getting UTIs in 2016, which were treated with short courses of antibiotics – but the symptoms kept coming back.
At times, her urine dipstick tests would suggest she did not have an infection, despite showing UTI symptoms, meaning she was sent away without any treatment.
However, the dipstick tests used to diagnose UTIs by GPs are outdated and miss up to 50 per cent of infections, experts say.
In 2017, Ms Spain was sent to a urologist in Ireland, who she claims misdiagnosed her with interstitial cystitis – an incurable condition with similar symptoms to chronic UTI.
“I was housebound, bedbound, I couldn’t go out,” she said, explaining the “detrimental effect” the condition had on her life.
“It was very despairing, knowing that I couldn’t get the help,” she added.
Ms Spain came across a Facebook group for people suffering from chronic UTIs and in 2019, she decided to book a flight to the Harley Street clinic in London as there are no specialist treatment centres in Ireland.
“How I got on that plane I do not know. I was in agony. I had to sit at the back of the plane by the toilet, which I still do now,” she said.
“It costs me nearly €900 every time I go. It’s costing me a fortune,” she added.
Ms Spain felt “relieved” to finally get a diagnosis as it proved she had an infection all along. However, she said her doctor in Ireland still insists that she does not.
“I told him that I’d been diagnosed with an infection but they still, to this day, dismiss me,” she said.
Ms Spain said it would be “a dream” to have treatment in Ireland due to the cost and stress of travelling to London.
She told i: “The journey is so tough.”
Another sufferer in Ireland, Mary, told a very similar story. She first started getting UTIs as a teenager but the condition became chronic in 2017 when she had an infection that would not subside for months.
She said: “I am a teacher, so I could barely function. I remember actually locking myself into a toilet at work and crying. I was having to leave the classroom every few minutes.
“I couldn’t walk anywhere, I couldn’t concentrate. I was so scared and worried so I went back to my GP and he said there was no infection.”
She was referred to a urologist who also diagnosed her with interstitial cystitis (IC).
“That had been my biggest fear all along – to be told I have IC – because I had read such frightening things about it,” she said, adding that she was “basically housebound” by this stage.
The 50-year-old from Dublin researched the condition online and made plans to fly to London to visit a private clinic as a last resort – in the hope that specialists could detect a UTI.
She said: “My own doctor was not supportive at all. He suggested several times it was psychological.
“It was one of the worst periods of my life for my mental health. I felt like nobody believed me, everybody was suggesting it was psychological.
“I felt totally gaslit by the doctors, I felt isolated. I had very dark thoughts at that time – it was a really scary, frightening low point in my life.”
When she was diagnosed with a chronic UTI at the London clinic, she burst into tears with relief. “I just cried – it was such a relief to be in an environment where I wasn’t being doubted,” she said.
Mary had to change her GP in order to access her treatment prescription, and her new GP “reluctantly agreed” to support her.
The treatment was effective and she came off her medication over a year ago, although she is having a flare-up at the moment so she is going back on some preventative medication.
She said she feels “lucky” to be able to access the treatment at all as she knows people in other countries who cannot even travel to London.
“Obviously, I’d prefer if there was a clinic here and it was recognised here, but I feel like things are moving in that way,” she said.
Angela Dullaghan, who has struggled with infections since primary school, said she had been bounced around the NHS searching for a correct diagnosis since her symptoms became chronic 25 years ago.
The 61-year-old, who is from Belfast but lives in west Wales, said that during her decades-long battle for the correct diagnosis, she was wrongly told she had interstitial cystitis and that some doctors had made her feel as though she was “imagining” her pain.
She was eventually diagnosed with chronic UTI five years ago by a private specialist and although she is not cured, she is able to manage her condition with antibiotics and “feels 100 times better”.
However, she has spent £9,000 on private treatment so far due to travelling to and from London as there are no treatment options in Wales.
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A Department of Health and Social Care spokesperson said: “We recognise recurrent UTIs can be distressing for many people affected, and we are supporting initiatives and research to ensure patients receive high-quality treatment and can manage the condition effectively.
“We are working with partner organisations to identify solutions to recurrent UTIs – including a recommended antibiotic treatment plan, and a new study into preventing recurrent UTIs in women.”
A Scottish Government spokesperson said: “Anyone experiencing chronic UTIs should speak to their GP who will consider relevant treatment options including referral to a specialist if required.”
A spokesperson from the Department of Health in Northern Ireland said a rapid review of urology services is underway with visits due to take place in mid-May and recommendations coming out in June.
The GIRFT (getting it right first time) review, undertaken by the Royal National Orthopaedic Hospital, is aiming to “identify areas of improvement and to help the Department of Health to have a better understanding about how urology services are being delivered across Northern Ireland”.
“Urology services will be examined to ensure they are being delivered in line with the Elective Care Framework and the Department of Health’s strategic direction on the expansion of the elective care centres regional model.
“The end goal will be to improve urology patient outcomes,” they added.
The healthcare departments of Wales and the Republic of Ireland have been contacted for comment.
https://inews.co.uk/news/women-struggling-chronic-utis-ireland-travel-treatment-2262021
