Two years ago, when Tilly Rose was 30, a hospital consultant said he could do nothing more for her. All he could offer was “comfort care” — a misnomer if ever there was one for someone in excruciating agony several times a day. “He was, essentially, leaving me to die,” she says.
For 20 years the Oxford graduate had been in and out of British hospitals, working her way through virtually every department: respiratory, gastroenterology, urology, endocrinology, cardiology, neurology. Now she was being told she was a lost cause — with the implication from some doctors that she liked being ill. (“Tilly, do you want to be in hospital?” was a common refrain. To which she would say, “Look around me. Why would anyone want to live here?”)
Given the ultimatum, in desperation and in secret, she put a post on her Instagram, @thattillyrose, summarising her medical history: burst appendix, emergency bowel resection, recurrent pneumonia, unexplained seizures, extreme bloating, nausea, leg cramps, exhaustion. Within days, hundreds of messages arrived from across the world, from other patients, PhD students, professors, doctors, nurses. Might one of them work out what was the root cause — like the Hugh Laurie character in the medical drama House — and, quite literally, save her life?
A medical mystery — and a horror story
Like any good script, you’ll need to wait for the answer. Let’s fast-forward instead three years and Rose has written a memoir, Be Patient. It’s a medical mystery. But it’s also much more than that. For in her two decades on the NHS front line, she saw the very best — and the very worst — of British healthcare. When she felt up to it, and most often when she really didn’t, she lay in her hospital bed and typed notes onto her phone. The young woman who had had ambitions to become a journalist if she hadn’t been so ill went undercover from under the covers.
Her book — which is often darkly funny as well as deeply shocking — is an antidote to Adam Kay’s This Is Going to Hurt, the bestseller about the life of a doctor in the NHS. This is what it’s like to be on the other side of what she calls “the blue box” — her curtained cell on Britain’s hospital wards.
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She hopes Wes Streeting, the health secretary, will read it. And maybe Liz Kendall, secretary of state for work and pensions, too. For Rose — who claims PIP — is not only a patient; she’s a long-term, chronically poorly one. “And once you’ve been ill for that long, it can sometimes feel like you’re in some way to blame,” she says. According to Rose, being as ill as she has been is “the full-time job you never signed up to and you don’t get paid for”.
We meet in the southwest London flat she shares with her boyfriend, Finn, whom she spotted in the pub on her first day at Jesus College, Oxford, and who has remained with her through her many medical emergencies. In the corner is what looks like a small suitcase on wheels — it’s her portable oxygen tank.
Young, articulate, smart, charming and attractive, with almond-shaped eyes and long blonde hair, she makes a compelling advocate for the ten million people in Britain who are defined as chronically unwell and suffering from two or more debilitating illnesses. “I always joke that when policymakers turn up to a ward it’s like a school Ofsted visit. Everything is prepared for their arrival. It’s spotlessly clean. The reality of what’s going on in our hospitals isn’t being seen.”
Rose flippantly refers to some of her hospital stays as “the sleepover from hell”. Cardboard bedpans full of urine and faeces “in a moat” around her bed. Sheets that aren’t changed. Beleaguered staff expected to clean without any products. Emergency call bells that don’t work. Patients asking if they can go to the toilet and being told to use a nappy instead. Her IV line tied to the side of the TV with a rubber glove because the stand is broken. The wrong name above her bed for weeks on end. At one point she asks for a flannel and all the nurse can find is a pillowcase. “People might say these conditions were a one-off. But over 20 years, I can say with some authority that I’ve become the expert patient. I really have seen it all and this wasn’t a one-off.”
She is just telling it like it is. Like the times when it is her mother and aunt who escort patients to the bathrooms because there are no staff available, or help to feed people, or do a shopping run. On one occasion her mother, Lorraine, saves a patient’s life when the call bell flashes above the next bed but no one comes to help because it’s the handover between shifts. The patient was suffocating until Lorraine ran and fetched help.
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What’s striking is that Rose isn’t whingeing. The book starts with the time when staff mistake “loin” for “groin” in the medical handwritten notes and give her an internal pelvic exam by mistake and she can see the funny side — “If it’s any consolation, you’ve got lots of eggs,” staff tell her. There’s a sense she wants to be the good patient — thanking the doctors a million times, not being a fuss — in the same way that she was the conscientious, high-achieving girl at school who dreamt of going to Oxford. Each chapter ends with pragmatic survival tips for long-term patients — from remembering to pack dry shampoo and a phone charger to, “If a test feels a little odd (for example a pole up your vagina), question it!”
‘There is no manual for coping with this’
It was when she was moved from paediatric to adult wards that she really noticed a deterioration in the level of care. “The lengths of time I was in for” — unwittingly using language reminiscent of a prison term — “I guess the more I saw. I saw things I couldn’t unsee.”
On one horrific occasion, “I remember lying there, trying to sleep, when there was this smell, a suffocating stench like I have never smelt before.” Spilling from under Bed 2’s curtain and seeping towards her is a river of blood. “I want to escape but I’m attached to too many drips.” She calls out. The nurse eventually comes in and the stench hits him too. It feels like she’s in a horror film. Surrounded by blood, she is left in a chair for hours in the corridor while the patient is treated.
“No one ever sat me down and said, ‘Here’s the manual on how to cope when, at 3am, the patient in the bed next to you dies of a bowel haemorrhage.’ I’ll never forget it. It will stay with me for ever.”
Rose was ten when she first fell ill with a burst appendix. From day one at secondary school, she was rarely in the classroom. Instead, she’d sit in hospital waiting rooms riffling through cue cards, and lie in hospital beds reading set texts. She was told not to bother taking her GCSEs; don’t bother applying for university. “But I proved everyone wrong.”
However, at university her bouts of illness continued. She was paranoid about being labelled “Tilly the patient”. “I did everything in my power to hide it from everyone around me. I lived this double life: pretending I was at the library when I was at a medical appointment; staying up all night reading, knowing the next day I could be in A&E.” At one point the university authorities told her she had missed so much time she must drop out for a year, but she persevered and graduated with a 2:1 in English language and literature.
She says that without her parents — especially her mother, Lorraine, who has essentially put her life on hold to look after her only child — she would not have survived. “If it hadn’t been for her, I wouldn’t still be here.” Lorraine — condescendingly referred to merely as “Mum” by many of the doctors — became an expert in her daughter’s symptoms, researching them online night after night, making the kinds of links that the experts weren’t.
At one point it’s discovered that Rose has non-infectious tuberculosis, most likely, Lorraine works out, from drinking unpasteurised milk as a child at her great aunt’s farm. But after treatment, and a reprise of two years when she is relatively well and gets a job in recruitment, she is ill again with excruciating back pain. This time she is diagnosed with Addison’s disease, which is when the body does not produce the cortisol that organs need to function. Left untreated it results in an adrenal crisis which can be fatal. Alarmingly, she’s told it’s often only picked up during a post-mortem examination. Even more alarmingly, the life-saving vial of hydrocortisone with which she must immediately inject herself whenever she feels an attack coming on? The hospital doesn’t have any.
When she does eventually get hold of the tablet form of the steroids herself, she pops them like sweets, but her symptoms escalate. Eventually, she is placed on the acute medical unit — essentially a way to get people out of A&E and meet targets — but because she doesn’t have a diagnosis, she is marooned on this general ward full of emergency cases for three months.
“Every Monday a different consultant would come round.” Individually some of them would be brilliant and would go away and research her case — but she’d never see them again. “I’m the abandoned suitcase at the airport,” she writes.
Chronic understaffing
At points her mother resorts to filming her daughter’s seizures because there’s never the same doctor on the ward, or one can’t be found. (Rose jokes in the book that the only day anything gets done is a Tuesday. It’s an exaggeration, but the chronic lack of staff, especially at weekends, is a common complaint.) In the footage she is doubled up, wracked with spasms. It’s like watching a lobster flailing in boiling water.
She tells the story in the book of a patient in her sixties being told she’s going to die on a hospital trolley in a queue in a busy corridor. Has the level of compassion deteriorated over 20 years? “I have noticed more and more that a basic level of care has been lost. The way people speak to each other. The word care is so much more than just the medicine and the medical breakthroughs.” She is careful to highlight the small acts of kindness that she remembers. “But they’re working within a system that’s often restricting them from providing that care.”
While there are standout moments of cruelty — the doctor who starts shouting at her — she thinks staff are in an impossible situation, overwhelmed by the working conditions and the paperwork and the reliance on agency cover. “It’s a grim situation to be working in. But at least they can go home. Patients have to sleep there, eat there, live there, day in and day out. They can’t leave. And the doctor who pops in for the morning ward round? It might be disgusting. They might be surrounded by bedpans and see blood on your sheets. But they can leave.”
‘Instagram saved my life’
In desperation and for some connection to the outside world, she started posting on Instagram about her treatment. “It was like this real-life medical mystery unfolding in front of people’s eyes.” By the time she was being offered “comfort care” and asked the public for any suggestions, she was “completely and utterly desperate. But the response was unbelievable.”
Lorraine compiled every suggestion into a vast spreadsheet and researched each one. They had always believed that there was an underlying reason that she had so many separate things wrong with her — that they must be connected, even though test results kept coming back “normal”. Sure enough, “There was one idea that she just kept coming back to and it was something called vascular compressions, where blood vessels become squashed, restricting blood flow to vital organs. And it just seemed to fit with my symptoms and everything that had happened to me.”
The name of a professor in Germany cropped up as a world expert. Her parents sold their house in Buckinghamshire to pay for treatment and in November 2023 mother and daughter flew to Düsseldorf.
“And, yeah, I say Instagram saved my life.”
In Germany she had vascular compression surgery and met women — who are more likely to suffer from the condition — from all over the world who had similar symptoms and had ended up in Germany as their last hope. “I’ve seen them arriving on feeding tubes, in wheelchairs. Women who are self-catheterising 30 times a day because they can’t urinate. And they’ve left the hospital walking. I know women in New Zealand who are now sending me videos of them riding their bikes who had been bed-bound.”
What she thinks was groundbreaking was the communication between disciplines. “The system allowed them to sit around a table and discuss different parts of the body, rather than viewing them all in isolation.”
The German medical team identified that she had been born with hypermobile Ehlers-Danlos syndrome (EDS), a condition which gives you abnormally stretchy connective tissue. If a person with EDS loses a significant amount of weight, organs and veins can end up shifting and stretching in the wrong places. At 14, she lost nearly a stone in two months due to the TB. This extreme weight loss, against the background of EDS, caused multiple vascular compressions to develop. The main one was directly connected to her kidneys, disrupting the blood flow to her adrenal glands; this caused the Addison’s disease. With her kidneys failing to filter out toxins, there was a build-up of heavy metals in her tissues and blood, culminating in severe heavy metal poisoning.
She calls this “a totally imperfect perfect storm”, but finally she had her House diagnosis.
She’s not completely better; her mum reminds her to top up on her oxygen supply. But the hope is that, very soon, once doctors in Germany have her endocrine system working properly, she will be able to lead a normal life. Now, the woman who never wanted to be a patient and hid her status as a patient has hopes of being a voice for other patients.
“I don’t blame anyone for not finding out what was wrong with me. But I do blame them for the way they spoke to me,” she says. “And that’s something that costs nothing.”
Be Patient: Life, Loss and Laughter from Behind the Hospital Curtain by Tilly Rose (Monoray £20 pp320) is published on Thursday. To order, go to timesbookshop.co.uk. Free UK standard P&P on orders over £25
