Just four years ago, Tilly Rose, now 32, lay shaking in her hospital bed. She was having yet another seizure. “I was drenched in sweat all the time,” she says. “My whole body and face were swelling. And this horrible metallic scent that was coming off me. It was as if my body was shutting down.”
Amidst these symptoms, and after three months in an acute medical unit (AMU) ward in an NHS hospital, she had been discharged. “I was still having attacks – these awful convulsions – and I had these rising lactic acid levels [which means there isn’t enough oxygen in the blood] that I was told were so high that I should already have died,” she says. “But the doctors came to my bedside and said they would be sending me home and putting me on palliative care.”
They had run out of tests and ideas.
For the past 20 years, Rose has been in and out of hospital departments, examined by scores of medics; desperately hoping each new doctor would be able to diagnose her. After being discharged, she felt as if she had been left to die. It was time to take matters into her own hands. In the end, it was Rose and her mother, Lorraine*, who cracked her case.
Until she was 14, Rose had no health problems; she grew up healthy and happy in Buckinghamshire, with her mother and father, a social worker and sales manager respectively. She had ambitions to attend Oxford.
She first became unwell in 2008 after drinking unpasteurised milk from her aunt’s dairy farm – although it would be years before this was identified as the cause. She was suddenly fatigued, suffering abdominal pain and losing weight. These symptoms only intensified as she grew older. By the time she was in her early twenties, she had undergone an emergency bowel resection, recurrent pneumonia and a burst appendix.
Doctors were unable to pinpoint the root cause of her ill health. Over the years, she diligently kept notes on every medical encounter, and now her new book, Be Patient, lays bare in distressing detail the many failures of an underfunded NHS.
Rose struggled to leave her bed to attend her classes. She had countless blood tests, scans and overnight monitoring, but doctors still couldn’t explain the cause of her chronic pain. They treated her with antibiotics for pneumonia or surgery for her abdominal pain, but she says the medical attention was always a short-term fix.
And a lack of continuity of care meant doctors often couldn’t grasp her complex history. Within a few months, she would be back in the hospital ward having “the worst sort of sleepover”.
In the two decades she has spent in and out of hospital, Rose had hellish nights; people climbing into her bed while she slept; patients dying next to her; dust so thick she could write her name in it. “I had a window where the blind was broken, so you couldn’t see out of the window for three months. The bed wasn’t cleaned for 30 days. There was blood all over the floor. My mum and aunt would come with cleaning products and unblock the sink.”
Rose documented poor hygiene on her NHS wards, including this monitor covered in dried bloodAt the start of her final three-month hospital admission in 2022, the doctors seemed hopeful and driven. But the longer the admission continued, the less engaged she says they became. “They started to say things like my ‘perceived inability to walk’ or, ‘perceived abdominal pain,’” she says. “My condition suddenly became all in my head.”
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This had happened before. “In the run-up to my first adrenal crisis [Rose was diagnosed with metal poisoning but doctors couldn’t find what caused it], I was going to the GP, listing all these symptoms; vomiting every morning, muscle spasming, terrible pain in my flank, headaches; and rather than doing any kind of physical blood test, I was referred to a counsellor.”
During this appointment, the GP asked if Rose was under pressure at work. “They said: ‘I think this is probably down to anxiety. These are all classic signs of panic attacks and the body responding to stress,’” she says. But because she wasn’t deemed suicidal, the counsellor couldn’t offer her any sessions. Instead, she was emailed a PowerPoint on mental health.
In 2014, after almost a decade, an NHS doctor finally found out what Rose was suffering from: tuberculosis (TB), likely from drinking the milk at her aunt’s farm. One doctor insisted that her TB was inactive. “Doctors, like everyone else, are humans. There are brilliant ones, and then there are also people who don’t speak to you in the way that you would expect.”
Rose’s mother had done extensive research on TB. “They were about to treat me for latent TB but my mum was insistent that I had active TB.” The doctor shouted at her mother. “They don’t like it when you do your own research,” she says. It turned out that Rose did have active TB. “It’s very dangerous to treat somebody for latent TB if they end up having the active one. It means you become drug-resistant, and the medication doesn’t then work. My mum’s research was essential.”
Dust on her TV and a blocked sink – Rose recorded the low standard of cleanliness at her AMU ward in 2022Throughout her experience, Rose insists she was a good patient in her interactions with doctors. “We were always very polite in how we introduced our ideas and our theories. We often phrased them as questions, rather than claiming knowledge,” she says. “But the only way we ever got anywhere was by taking control and doing our own research. My mum, in particular.”
But even after her TB diagnosis and treatment, her condition worsened. Doctors couldn’t figure out what was going wrong. And so in 2022, after three months in the hospital, doctors finally discharged her for good. They had no more treatment left for her.
“They said there were no more tests they could do for me,” she says. In desperation, she posted details of her symptoms on Instagram.
Within 24 hours, she had an inbox full of hundreds of emails. “So many people got in touch. We suddenly had so many diagnostic ideas, test suggestions and treatment options from doctors.” Her mum compiled all of the theories into a spreadsheet. “She spent the next year working her way through every single suggestion.”
There was one idea that kept cropping up: a condition called MALS, a form of vascular compression. This is when blood vessels become blocked by organs or structures. “As she looked into it more deeply, it began to fit.” In the research papers, the name of one German professor kept appearing. Within a year, Rose and Lorraine were on a flight to Düsseldorf.
“When I met the professor, he already had my full medical history and all of my UK scans,” says Rose. “He could see that I had a severe vascular compression near my kidney, and it was so severe that blood was leaking into my spine.” As a result, Rose was having seizures and a range of neurological symptoms. It also meant that toxins were not being filtered by her kidneys, causing a build-up of metals like zinc and magnesium, which caused the severe metal poisoning known as Addison’s disease.
At first, the TB appeared unconnected to her vascular compressions; but the doctors kept digging. Finally, a maverick doctor she dubbed “Dr House”, discovered she was born with hypermobile Ehlers-Danlos syndrome (EDS), a condition which gives you abnormally stretchy connective tissue. EDS worsens if the sufferer experiences rapid weight loss – which Rose had done when she first became sick with TB – and can lead to the vascular compression that she suffered. Rose’s treatment included major abdominal surgery. “It was very serious, but there was an option. There was a route forward. Having the next step was everything.” Rose’s parents sold their house to pay for her treatment in Germany.
Rose thinks her diagnosis in Germany was hastened by a multi-disciplinary approach; with consistency and better communication between doctors. “[I found] there is very little communication between different disciplines in the NHS, and no continuity of care because doctors are constantly rotating,” she says. “In the two weeks I spent in a public hospital in Germany, I had more tests than I had received in three months at a London hospital.”
In the UK she felt that “no one takes ownership of patients who have not yet had a diagnosis” like her. “Rare disease patients, I believe, are massively sidelined in England because there is no clear pathway or category for them to fit into,” she says.
Rose’s treatment is not over; but she is home from Germany and is improving. She is now undergoing treatment with the NHS. “Last year I couldn’t go to the bathroom on my own, now I’m living independently.” She missed out on much of her twenties, the parties and busy weekends. But as she enters her thirties – now living with her fiance who she met at Oxford – she is ready for a new chapter.
She isn’t bitter; neither is she angry. She is aware that she is just one of countless people who feel let down by an underfunded NHS. “I am making it my mission to be the voice of patients.”
The NHS, says Rose, is excellent in crisis. The doctors try extremely hard with the limited resources they are offered. But sometimes, as chronic pain continues and quality of life begins to slip away over months and years, it is simply not enough.
“No one takes ownership of your care in the UK. It sounds strange to say, but I felt ecstatic after receiving such a serious diagnosis,” she says. “After all this time, it was a relief.”
*Name has been changed
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