Tilly Rose (below) was ten when she was first admitted to hospital with appendicitis, which isn’t that unusual. The unusual part was what came next: pneumonia, a bowel resection, adrenal crisis, gastroparesis (failure of the stomach muscles), seizures, TB and a host of other illnesses that would take up this entire page if listed in full.
For 20 years, Rose was treated as a ‘medical mystery’ and NHS doctors were unable to diagnose the underlying cause of her declining health. Things got so bad that, in 2023, a consultant advised ‘comfort care’ – a nicer word for palliative care, but an inappropriate one for a 30-year-old who’d spent two decades in near-unrelenting agony. Desperate, Rose shared her symptoms on Instagram and, to cut a long story short, was finally diagnosed and treated in Germany for a connective tissue disorder.
‘Memorising a 60-second medical history helps ensure details don’t get lost’
Now, thankfully in better health, Rose has written a part-memoir, part-manual to help others survive the NHS. Over 20 years she has accumulated heaps of knowledge: the logistical (always carry a map of the hospital); the medical (always question exactly why you’re having a certain procedure); and the emotional (keep your fighting spirit up when bedridden by completing one tiny task independently per day). Here, she shares 14 top tips for patients and loved ones.
Prepare notes before appointments
Patients often wait months for specialist appointments and when they finally arrive, your time is short. Rose says writing clear notes beforehand is essential to making those 20 minutes count. Bring brief bullet points outlining your medical history, tests you’ve already had, treatments you’ve tried and medications you’re on. Doctors may not have read your full file – particularly if you’ve been hospitalised frequently – so don’t assume they know your story.
Document your symptoms
Doctors can only respond to what they see, and many symptoms don’t conveniently appear during ten-minute ward rounds. This is where visual evidence becomes powerful. Rose filmed her seizures on her phone, creating tangible proof of what was happening outside clinical check-ins. Being able to show symptoms rather than just describe them makes it harder for busy doctors to dismiss you as exaggerating.
Do your own research…
Don’t feel limited by the ‘patient’ label – you don’t need a medical degree to learn about your condition, and building knowledge helps you ask well-informed questions. What’s more, overworked doctors have less time and inclination to research the latest treatments or possible diagnoses for patients with complex conditions. Being informed often meant Rose and her family could suggest new treatments and tests that stressed medics had overlooked.
…But be mindful how you present it
Frustration – while understandable – rarely helps patients get anywhere. Instead, Rose found that asking questions calmly and framing conversations as collaborative (‘How can we solve this together?’) was far more effective than getting angry. Humility always works: Rose proffered her opinions with, ‘Obviously, I’m not a doctor…’ In a system with a clear power imbalance, sadly, careful language is key.
Write and learn a 60-second recap of your medical history
Continuity of care is one of the NHS’s biggest challenges. During a 60-day stay in hospital, Rose saw dozens of doctors, and by the final week each one had 60 pages of patient notes to skim through before ward rounds. Unsurprisingly, they often had little clue about her prior treatment. Memorising your own short summary with key events, symptoms and medicines helps to ensure important details don’t get lost between handovers.
Keep a list of hospital hacks
Long ward stays have taught Rose plenty of practical tricks. One of the most useful: olive oil on cotton wool is the quickest, least painful way to remove sticky plaster glue from skin. The best hairdo for patients? A French plait, which stops matted clumps forming even when bedridden.
Know when to delegate
Being stuck in bed, exhausted or cognitively impaired makes even simple admin impossible, let alone time-restricted tasks like lodging a complaint. So there’s nothing weak about asking for help. Condition-specific patient charities are invaluable and often overlooked: many offer helplines, financial support and email templates for admin. Rose recommends TB Alert, Ehlers-Danlos Support and Addison’s Disease Self-Help Group to those impacted, but you can find a full list of condition-specific organisations at mobiliseonline.co.uk.
FOR FRIENDS AND FAMILY
Give practical presents
Flowers are well-meaning, but often impractical – they weren’t even allowed on most of the wards Rose stayed on. Instead, practical comforts made the biggest difference during her long hospital stays. Soft pyjamas, familiar toiletries, dry shampoo, snacks, books, earplugs or an eye mask can all help make a clinical environment feel more like home.
Share news from the outside world
Friends and family often hold back on their updates, worried they might make a hospitalised relative feel ‘left behind’. But Rose says the opposite is usually true. Hearing about everyday life – new babies, celebrations, funny moments – helped her feel connected to a world she hoped to return to. If you’re unsure whether long-term hospitalised friends want to see snaps or hear stories, ask.
Hospital car parks are mazes. Plan accordingly
Long walks and expensive fees can turn visiting an in-patient into a logistical nightmare. Plan ahead where possible, researching parking options and asking staff about concessions or long-stay discounts to relieve some of the stress and make repeat visits easier.
Help with simple self-care exercises
Lengthy hospital stays make everyday self-care difficult. During one stay, Rose recalls her hair getting so matted her mum had to cut chunks out. Offering to help someone plait their hair or giving them a quick manicure helps them be more physically comfortable and preserves a sense of dignity to make them feel less ‘patient’, more ‘human’.
Don’t expect replies
Severe illness can make responding to messages feel overwhelming or impossible. Rose says that even when she couldn’t reply, knowing messages were coming through and hearing her phone ping still mattered. Silence shouldn’t be taken personally: checking in without expecting a response will help a patient feel remembered without additional pressure.
Do say: ‘Your situation is horrible’
When someone is ill, loved ones often feel pressure to stay positive or ‘fix’ things. Rose says that sometimes the most helpful response is to say: ‘Your situation is horrible.’ You don’t need to bring solutions, and patients don’t expect you to be a medical expert when it comes to their condition. They just want you to hear and believe them.
Keep showing up
Support usually fades as an illness goes on. But long-term hospitalisation doesn’t become easier just because it’s familiar. ‘Think about being stabbed with a needle once,’ Rose explains. ‘Then think about being stabbed with a needle one hundred times. The latter doesn’t hurt less because you’re “used to it”.’ Continuing to check in and visit will mean more, long-term, than extravagant gestures early on.
Be Patient by Tilly Rose is out now in paperback (Octopus, £10.99). To order a copy for £9.89 until 15 February, go to mailshop.co.uk/books or call 020 3176 2937. Free UK delivery on orders over £25.