It’s not very often you see the words ‘amazing’ and ‘hospital’ in the same sentence! For those new to my blog, my Adrenal Insufficiency puts me in hospital quite a lot, albeit normally in the Midlands, which is where I live. But I grew up in Cumbria and my parents still live there, which is how I ended up being admitted there last week.
One evening, I suddenly started getting bad diarrhoea and my BP and HR went pretty high for no reason as far as I could see. Those are all red flags for my illness, so I tried my usual tricks to avoid hospital, which didn’t work and then reluctantly did my emergency injection and my parents took me to a&e in Carlisle.
I really, really didn’t want to go to hospital in Cumbria. Because my illness is rare, I regularly have to explain or argue what I need to medics even in big hospitals. It’s considered (or at least it should be) as life threatening as a heart attack and it needs acting on fast to avoid me becoming critically ill. How was a small, rural hospital supposed to have any idea what to do with me? I had visions of being sent over to Newcastle.
I was really wrong and needn’t have worried. Pretty much from the second I arrived to the moment I left, the care was spectacular. I’m pretty critical of hospital treatment, like I said, I’ve had *a lot* of experience. And I’m good at reading between the lines. So for me to say that my care was spectacular is a huge deal. I was seriously impressed. Here’s why:
Everyone was friendly. I mean everyone- healthcares, receptionists, radiographers to cleaners. Everyone who even remotely looked at me said hello and introduced themselves.
No one moaned about their job or being overworked/underpaid. There were no excuses of ‘we’ve not got enough staff/I’ve not got enough time to deal with that/it’s been a horrible evening…’ like I usually get, even when I’m being polite and asking for basic care. The hospital was full, there were no beds but everyone got on with it cheerily and, more crucially, apologised for things when needed. Apologies, in my experience, are rare in the NHS.
I was treated like an expert patient. Because I’ve been forced into a position of explaining stuff to medics so often, I’ve become an expert in my illness. But I’m not always treated like I know my illness well. The first doctor I saw, José, took my emergency info pack from me, told me his plan to run the sepsis protocol and then asked if I wanted him to do anything from my perspective, so I asked him to run the Addisons protocol too. Which he did. It was great- he was clearly in control of my care, which meant I could ease up a bit on trying to keep tabs on what was going on, but he was happy to listen to what I had to say to inform his decisions. The same with the triage nurse- she didn’t know what my illness was, checked with me and then went off to check with the nurse in charge. When I said I needed an IV put in ASAP, she took me seriously and got me a bed within seconds.
They acknowledged I’d been through it before. They still told me what they were doing but José asked me where the best place to put a cannula in rather than just jabbing me a lot. Or Carmella, a really good medical doctor, recognised that being in hospital regularly must be my norm so asked me what was different this time from other times. Just a few simple sentences, which managed to convey empathy.
There was a lot of empathy. In a non-annoying way. People seemed to actually care. I take a practical and ‘get on with it’ approach to hospital anyway, but mostly because that’s the general attitude I get from staff- it was nice to have someone care a bit about me as a person rather than just seeing me as a walking illness.
Communication was amazing. The NHS isn’t really a national system. In the Midlands, I’ve got my medical records, red flags and alerts set up in the local hospitals. But these can’t be accessed anywhere else in the U.K. Bearing in mind they only had the information I gave them in my homemade emergency booklet, and they only had one copy, it was amazing. Everyone who came to talk to me had read my info, the treatment plans were spot on and everything was handed over perfectly at the relevant points. This never happens! I’ve never had such a smooth transition from a&e to medical consultant to ward. It also meant I didn’t have to explain everything over and over. I don’t mind educating people in adrenal insufficiency, but it made a nice change being able to let other people look after me, rather than having to suss out if they knew how to treat me or not (people have a tendency to pretend they know and get it really, really wrong)
People didn’t second guess or make assumptions. My biggest gripe in hospital is people looking at me, assuming something and getting it wrong. I look ok and sound ok when I turn up to hospital but no one dismissed me because of this, like is often the case. I’m young and seem mobile but I actually struggle with walking distances, so I appreciated being asked if I needed a commode or if I could walk to the toilet. If there were any slight contradictions, someone came to check with me or my nurse.
If staff said they’d do something, they actually did it. Basic, right? So many times I ask for something or someone says they’ll ask the doctor and they don’t, whether it be they forget, decide I’m just being annoying or can’t be bothered. Here, they actually did, and if there was a delay or a reason, they came and updated me.
I felt like staff cared. Because I’m young and can go to the toilet myself, I usually get left to it and ignored by staff in hospital. Even at obs times, it’s not unusual for a healthcare or nurse to blank me and carry on with their own conversations or use it as an excuse to moan about how busy they are. But in Cumbria, the healthcares made a point of popping in for a chat every half an hour or so, asking if I needed anything. It made a lot of difference mentally.
I have to follow a low carb diet to manage my endocrine conditions but I’m also dairy and gluten intolerant, which usually gets a lot of eye rolling and complaints from staff. In the Midlands, I’m regularly told there isn’t any food available for my diet, despite it being a medical diet, and told to ‘eat what I’m given’. Which usually ends up in me eating too many carbs and having hypos (because if you’re admitted for diarrhoea and don’t eat their food, they chart it and you can’t go home until you do!). My husband brings me food normally. I told my healthcare before breakfast and she didn’t bat an eye. She said I might have to wait until after 8 for breakfast because of the kitchens not knowing I was there but she gave me the gluten free and dairy free options. She was horrified when I told her about the attitudes I usually get! And by 8.10 she’d brought me my breakfast and produced a gluten free menu for the rest of the day.
The food was really good! Highlights of the day in hospital are meal times. But hospital food is usually cold (luke warm if you’re lucky) and stodge. An NHS ‘classic’ is shepherds pie, with roast potatoes, boiled potatoes and turnip, as seen here in Coventry.
So 3 lots of potatoes. And ridiculously high carb! Here’s a low carb option someone cobbled together in the Midlands when I insisted once- sausage salad?!
The menu the healthcare brought me in Carlisle was brilliant!
You’re lucky if you’re even offered a choice in most hospitals, and even then they narrow it down to 3 options (it’s quicker for them if you’re not given a choice). My healthcare noticed I hadn’t chosen any pudding for the day and I said I couldn’t eat most because they had dairy in but the tinned fruit had lots of syrup in so would make it high carb so I couldn’t eat that either. She said she didn’t want me to miss out and asked if actual fruit would be ok and went and tracked some down for me. This meant a lot because she wasn’t making me feel bad about my stupidly awkward diet, she was helping me manage my health while in hospital and she cared about my mental wellbeing. She wanted me to be happy with my meals and enjoy them. When it arrived, it was HOT and it came with a full break down of the ingredients and nutrition, so I had the carb count on the packet. This made my life so much easier!!
These meals might be available in my local hospitals, but I’ve never been offered them, even when I’ve specifically asked for them.
No one tried to lock my medications away. If I’m honest, I tend to lie when I’m asked ‘do you have any of your own medications with you?’ Because I have a complete set in my pre-packed hospital bag. But if you tell people that, they take them off you and lock them away so that they can dish them out to you (fair enough). However, since mine are strictly timed and I can die if they’re late, I don’t hand them over without a fight. On this occasion, I had to admit I had them because I needed to take them at the time I was being asked the question. The nurse asked if I wanted them locked away and I said no, which he said was fine, just don’t take any unless they’re charted. Fine by me. It’s nice to be trusted for a change.
Possibly the most important for me, I didn’t have to argue with anyone about hydrocortisone dosing or time sensitivity. Hydrocortisone keeps me alive, without it, I die pretty quickly. It’s a very strict schedule (4am alarms anyone?) and this is never usually appreciated by staff. It becomes even more crucial I have the right doses at the right times when I’m in hospital, since that’s the whole reason I’m there. There’s always a mix up about how to dose (IV or oral), how much to dose (it doubles or triples depending on circumstance) and what times to dose. Lots of nurses think I can just take it whenever and it’s fine. But it’s not. I usually have to spend most of my time in hospital pushing my call buzzer, insisting I’m given my meds or having to say a lot ‘if you don’t give me them, I can die, they’re already late’. (in case you’re wondering- this is why I keep my oral meds. But I don’t have my own IV ones, hence the arguments to get them) It’s stressful and I regularly end up crying at the nurses’ station begging people to give me them. But I didn’t have to do any of that. The staff used my oral schedule and knew the standard IV schedule either from my info pack or because they’d read up on the guidelines. I didn’t have to ‘check up’ that the doctor had written it up or that the nurse would get it, they just did it. It made the whole experience much easier, less stressful and I could actually concentrate on getting better, not on trying to keep myself alive.
My stay in Carlisle hospital was great as far as hospital admissions go! But… I realise I’m getting excited about things which should be happening everywhere else but aren’t- feeling cared for, getting fed food which won’t make me more ill, being given a treatment plan which helps me get better. This hospital faces the same issues as the other ones I go to- overworked staff, underpaid staff, lack of beds etc. Yes it’s rural so smaller, but that means they have less staff to start off with and have different challenges to manage. That’s the first time in hospital where I haven’t cried at any point. My big question is, if they can do all that there and make me not feel traumatised about an aspect of it, why can’t they do it everywhere else?
As a chronically ill person with a volatile condition, I probably have some kind of medical PTSD largely induced by some really bad hospital experiences and people not seeing to care about almost killing me. This positive admission will helpfully go a long way to help that.