I went to the doctor and was cured!

The title line is definitely click bait 😉 I *did* go to the doctor and he *did* diagnose and prescribe me with something which did cure a pretty minor problem. But a cure non-the-less!

Is this what normal people feel like? They go to their doctor, tell the doctor their problem, they get told what it is there and then and are given some treatment and 2 weeks later it works and you stop treatment.

I have to admit to being super confused the whole time. I got to the point where I was more rash than normal skin and my GP and immunologist were a bit stumped because it’s impossible to diagnose a rash on a phone appointment, so I got sent to a dermatologist. It turns out I had 3 different types of rashes going on but I thought it was the same thing because as far as I was concerned, it went away when I took more steroids and flared up worse when I was low on cortisol or was tapering. But it’s not- type 1 was because I was allergic to something I was eating, type 2 was when I actually was low on cortisol and I get a kind of hyperpigmentation (normal for adrenal Insuffiency) and the 3rd type was a dermatology problem called Pityriasis versicolor, which is where your skin has a build up of too much yeast and basically stains the skin and gets a bit scaly.

Despite looking contagious because of my 3 different rashes, I wasn’t. I walked into the dermatology department, spent all of 30 seconds showing my doctor my rash, he said what it was which I promptly forgot because it’s a stupid name, he rattled off a set of instructions for a cream and confidently said that it would work so he was discharging me back to my GP.

Dermatology is completely new to me so my first thought was “it can’t be that easy, surely he’s missed something”. Normally I study a lot before doctors appointments, I know what my test results are and how they impact on other systems in my body. Googling rashes is not pleasant (do not recommend) and you get some pretty horrible pictures. So I decided to just see what happened when I went. But it was exactly how he said it was- I put the cream on every 3 days for 2 weeks and it completely disappeared.

Usually I turn up to the doctor and have to spend ages explaining what adrenal Insuffiency is, argue that taking steroids at this dose isn’t optional and isn’t going to change and that everything that’s wrong with me has the potential to trigger my adrenal Insuffiency. Meaning it’s important to treat and manage the symptoms as best as I can to avoid them triggering anything. I didn’t have any of that at this appointment. I spent more time walking from the car park to the department than I did in the room.

So my first thought was “nope. It’s probably not that simple, he’s fobbing me off”. This didn’t help that he was one of those doctors who don’t like using full sentences to talk to their patients, and who like to type up their notes on the computer and say “I’ll send it to you” rather than telling the person sat in front of them. I hate this. You can’t double check a doctor’s work if they do this, which I normally have to. I kept asking him to explain it and he half did, half typed so I gave up and waited for him to give me a hospital prescription, which is another way I check up on things. Which he didn’t. He said he’d give it to my GP and they’d issue it. Which also annoyed me because consultant letters can take up to 3 months to come through so my next thought was “I’m never getting this prescription”. Plus most of my consultant issued meds have to be dispensed initially in the hospital pharmacy because they’re usually either off licence or complicated.

Honestly, I left thinking that he was a rude, idiotic doctor and that I was going to have to go back and argue with people again, while looking like some kind of scaly, spotty alien. But before I’d even got home from the hospital, he’d already sent my clinic letter to my GP via an e-portal that I’d never used despite my many other doctors. A rude doctor he might be, but I was definitely wrong about him being an idiot and fobbing me off. (Side note- I know his hyper efficiency was because he was able to type the letter while I was there, which is great, but I shouldn’t be able to describe more about the back of his head than I can his face because that’s what I spent most of my time looking at while he was typing away).

It’s been a long time since I’ve been cured of anything. In fact, I can’t actually remember the last time I went to the doctor and completed their treatment and had a problem resolved. Even things like chest infections and UTIs haven’t been cured the way they’re supposed to- they’ve either lurked for ages or changed into something more complicated. Apparently this skin thing has the potential to come back because I think once you have it, it can reoccur quite easily (a bit like cold sores). But because the treatment worked so fast the first time, it looks to be straight forward again if it comes back.

I quite enjoyed being straight forward for once. If the doctor hadn’t been quite as rude, it would have been the perfect doctor appointment!

I like my GP

Without sounding like an obsessed stalker patient, I like my GP. He’s been my GP for the last 2 years but only as some phantom voice on the end of the phone because of covid. Last week I met him for the first time! I’d conjured up an image of a tall bloke with brown hair whenever I’d spoken to him, so I had to stop myself from saying “yes, I knew it” when I saw him 😂 although I still don’t really know what he looks like since he was wearing a mask.

Anyway, I like him because he *listened* to me. Sounds simple, yes? He always has listened, but I was more apprehensive following an endo appointment where she’d written in a letter that all my problems were brought on by me by giving myself too high a dose of steroids, and that most of my problems were psychological. This is the exact same problem I had with my very first endo 8 years ago, and it caused no end of problems getting treatment, I had to argue a lot with doctors in a&e and people withheld steroids from me when I actually needed them to stay alive. It wasn’t fun, and is essentially the medical equivalent of holding a gun to someone’s head. The point both of these endos were/are missing was *why* I needed such a high dose of steroids in the first place. Eg asthma attack= steroids. Allergic reaction = steroids. Severe diahorrea= steroids. Get on top of those= less steroids. Telling me to taper my steroids when they’re treating other things too is always going to end badly. And with me taking more steroids. But they’re only seeing my steroids in AI terms, they’re not looking at the bigger picture.

However. This is where my awesome GP comes into it. And he’s the difference. First time around, I had one GP who didn’t know the difference between hyperadrenalsim (too much cortisol) and hypoadrenalism (too little cortisol, which is what I have). Which massively confused the situation. I asked for a different GP and got one who also thought all my problems were psychological, despite me proving it wasn’t to her over and over (I’m really, really good at symptom diaries and tracking things). After a lot of arguing, she agreed to send me to a different, more senior endocrinologist for a second opinion to prove me wrong. Except he agreed with me and wrote a really good letter supporting me. Which obviously didn’t go down very well!

There was no guarantee that my new (ish) GP would also back me up. So I was worried. Especially because I feel like I spend half my life telling him that everything my body does seems to be the exact opposite of what it’s supposed to do. But he did. He’s not the type of doctor who would just agree with the patient to keep them happy and make his life easier though. With a lot of doctors, I feel like I have to censor what I say, because they’ll either think I’m being stupid or making something up when I try to explain some of my more random observations from experiments I’ve done on myself. Or even the fact that I do experiments on myself to try to work something out in the first place! Most doctors have an “I only deal with one problem at a time/my specialism” mentality which isn’t helpful for people like me where one problem sets off another one. A GP’s job should be to see you as a whole human but there are so many GPs who say that you can only discuss one problem in one appointment slot. My GP spent 45 minutes with me the other day.

One big thing which I think helped? He let me have a moan. A non-censored rant. And he didn’t sit and type at his computer while I was doing it (some doctors don’t look at you for the entire appointment because they’re too busy typing), he actually sat and listened. He cared that I feel terrible all the time and I’m being passed around various different people and not getting anywhere. We both know that there might not be any solutions but recognise that alleviating the symptoms we can, even just by a little bit would make a difference to my quality of life. We’re in a world of target driven, conveyer belt healthcare- get people through the system as quickly as possible. “Treat and street” them, I’ve heard medics refer to it as. Having people like me with long term conditions doesn’t make for a good statistic, so I don’t often get given the time to vocalise how frustrated I am or to list the gigantic array of symptoms I have every day and what I’ve tried and what has or hasn’t worked. With a lot of doctors, if you start to get annoyed, they shut you down with a closed question. Or they try to pacify you by “recognising” your mental health might be suffering, but ultimately ship you off to yet another person to discuss it, because they don’t have time. Sometimes you just need a rant to feel better, without someone trying to make out like you have a mental health issue which needs addressing. I definitely do have mental health issues from all of this, but not every mood or feeling I have about it is actually a mental health problem. Mental health is “in” at the moment, and lots of doctors like to diagnose something as a mental health problem because it’s convenient. Fatigue? You’re depressed. Feeling sick? Anxiety. The outcome is usually “go do some CBT and see this counselling service with a really long waiting list and if you still feel bad I’ll think about what else it could be”. Emotions are normal, but it’s kind of an unwritten rule that you shouldn’t display any of them (except when it suits the person treating you).

(Side note: I’m not belittling mental health and how it affects physical health. I’m saying doctors shouldn’t flippantly diagnose mental health conditions because that’s a disservice to everyone)

It’s also where other doctors miss a trick. In letting me ramble a bit, my GP would have been able to learn a lot more about me and my health than if he’d just asked targeted questions. Facts about symptoms are useful if you feel ‘normal’ most of the time and you notice changes, but for someone like me who spends most of my time ignoring symptoms just to get through the day, it doesn’t work. And it relies on the doctor asking the right questions. In the course of my little rant, I said “oh yeah, X happens” lots of times. Separately, the little problems might not mean anything, but collectively, it could help solve the puzzle. Plus I have so many symptoms and see so many doctors, I forget what I’ve said and who I’ve said it to. And they don’t tend to care beyond their specialisms anyway…

I’ve had some pretty terrible GPs. This one is the best I’ve had for a long time. He’s a wee bit grumpy and matter of fact, but I don’t mind that because he’s reasonable, makes time for his patients and gets things sorted as much as he can. If he doesn’t know something, he goes away to find out rather than blagging it. He asks for my opinion in my care and acknowledges that I know a lot about my condition. Some of my other doctors could definitely learn a thing or two from him!

Why I Don’t Want to View the Staff Who Care For Me As Humans

When I say ‘humans’, I mean people who have bad days and who have feelings. I see a lot of people posting on social media about how we should remember that ‘doctors and nurses have feelings too’ and ‘HCPs also have bad days’ or ‘you don’t know what their last job was so don’t be disrespectful’. And let me be clear here, no one deserves to face physical or verbal abuse while during their job. But, to be blunt, I don’t care about their personal circumstances or what type of day they’re having. They’re there to do a job. And I’m always a polite and respectful patient.

I’ve been spending a lot of time around health professionals since 2012. In less than a decade, I’ve probably seen more medics than most people will see in their entire lives. I’ve been on the receiving end of endless rants about how the NHS is short staffed, overworked, how other people haven’t done their jobs properly, how nurses have a lot going on at home, how people have worked past the end of their shift… I’ve given healthcare professionals ‘counselling’ when they’ve got upset about something that happened with another patient or their husband. I’ve heard waaayyy too many stories of people’s sex lives that I don’t care about. Far too many times, I’ve coached junior staff about my illness and even the best way to treat me. Nothing has changed since 2012, so ranting about it to me isn’t going to make the slightest bit of difference. And part of me wants to scream ‘I’ve heard this rant before, get over it already!’ when I can sense how a conversation is going.

Having a chronic illness is hard. Being in constant pain, having debilitating symptoms, having your quality of life seriously limited is frustrating, unfair and exhausting. Having a life threatening chronic illness is even harder. You walk a fine line every day. It’s so hard to put into words the responsibility you have every day to do things just to keep yourself alive, let alone the feelings you have that surround having a scary illness. But life happens and you have to get on with it, trying not to be bitter and twisted about the fact that you’re dealing with a lot, trying to disguise huge bits of it from your friends and family so as not to worry them or trying to get through each day in one piece and give yourself a reason to drag your arse out of bed and keep trying the next day. You never get a break from it, it’s always there. It impacts on every aspect of your life. You can’t pack it off to your grandparents for a weekend, like you do with your kids when it gets a bit much. And it comes with you on holiday, unlike taking annual leave from work. It’s relentless.

Being in hospital or going to medical appointments is pretty much the only time someone else remotely takes the wheel. And even then, because my illness is rare, I spend a lot of time working out who I can trust enough to let drive for a bit so I can ‘take some time off’. It doesn’t matter how supportive family and friends are, they’re still family and friends, and you always hide something from them. In hospital, someone else can do the steroid maths and make sure I’m awake to eat or take pills. But I’m also at my illest or most vulnerable when I’m in hospital, because otherwise why would I be there?

So I don’t care if my nurse has relationship problems. Or if my doctor is feeling under the weather. Or if my paramedic has come from a tricky case. As a human being, I obviously do, but as a patient I really don’t. I need my healthcare professionals to have it together, so that I can actually let out my feelings about what’s happening to me, to someone who can take control and look after me until I can pick myself up and take over the reins again. The worst thing a HCP can do when ‘supporting’ me is cry. It pisses me off so much. I don’t see it as empathy, I see it as a person who can’t keep it together enough to let me have the space to have a reaction. You can show empathy without actually showing me your feelings. Otherwise I feel like I should be comforting staff, rather than the other way around.

I need my HCPs to be professional, to have a sense of humour and treat me like a human and not just a bed number. Like I said, I’m always polite and respectful. I don’t want to hear rants or bitching, and I definitely don’t deserve to have a sullen or sulky member of staff treating me. As harsh as it sounds, if they can’t keep their own feelings in check when dealing with me, then maybe healthcare isn’t the job for them. I need my healthcare professionals to be dependable and have it all together, so that I can have a tiny bit of respite from it all for a few hours.

At the end of the day, they’re trained and paid for what they do while they’re in hospital. I’m not. By all means, chat to me, I’d actually really quite like that. But they shouldn’t use me as a sounding board or free counselling or take their anger out on me.

Doctors and how they communicate

I had an ultrasound on my abdomen today. It was a ‘we’re ruling out any liver problems’ because some of my blood work is abnormal. And I’m not bright yellow, which is the most obvious symptom! Anyway, a trainee doctor did the scan and then the consultant did the same exam after, so it was a pretty long time to be lying there being poked and prodded, listening to the two doctors talking to each other.

Both doctors were really nice and communicative and used my name etc so it’s not a case of they ignored me and I felt like they weren’t communicating well. It’s the words they used and the way they phrased things, and it got me thinking about other appointments.

The trainee said to me ‘do you know why you’re here for your ultrasound today?’. I replied and said ‘my liver is a bit deranged apprently’. Then he put the probe on my stomach and said ‘do you have pain?’. I said ‘no’. Then he looked a bit confused. So I said ‘what do you mean?’ and he said ‘have you been experiencing pain?’ Which to me was a whole different question.

Maybe it’s because I’m a languages graduate and I overthink things, but, having had my 35 minutes of lying still and saying nothing after that, I had a lot of time to think.

Do you have pain? Could mean:

– have you been experiencing regular pain because if you point to where it hurts, I can focus my exam a bit more there. Which is how he intended it.

– are you in pain today? Because, again, I can focus the exam on certain areas, or I can try and ease some of your discomfort.

– does it hurt you when I poke you with my probe? Because he’d literally just started poking me when he asked the question.

I wasn’t in pain at that precise moment in time, which is why I answered no. But I’ve been having severe abdominal pain, which is why I’d been sent for the scan. I thought about all the other times I’d been asked ‘do you have pain’ and answered potentially the ‘wrong’ answer because the lack of time marker meant I just answered the question based on what I assumed the doctor meant, not because I actually knew. If he hadn’t been a trainee and looked stressed by it, I maybe wouldn’t have even realised that there were different options.

It gets more complicated if the doctor or the patient has a different first language to the other. Or if they’re rushing through their questions and it seems like the conversation is all over the place and the patient can’t work it out from context. In teaching, we get trained to consider thinking time when we ask a question, to allow people to process the answer. Ie there’s no point in saying ‘who can tell me what a four sided shape is called?’ and then answering with ‘rectangle’ after 2 seconds before moving on. Because a) there’s at least 2 right answers (square and rectangle) and b) there’s no time to think about what context the question was being asked in, in order to think of the most appropriate answer. Or if you’ve got an autistic child in the class, their answer might be ‘I can answer the question’, since the question didn’t necessarily say ‘tell me the answer’, it could be interpreted as ‘who has the knowledge to be able to tell me the answer?’.

I do actually need thinking time when people ask me questions, because sometimes I forget what my symptoms are because they’re part of me and happen every day. And I also need specific questions placed in context with appropriate time markers clarifiers. ‘ Are you in any pain today?‘ Or ‘do you have pain when I do this…?’.

It doesn’t take a lot of extra time to say, but it speeds the whole consultation up because it gets rid of any ambiguous statements. Just because the doctor knows what he’s asking, doesn’t necessarily mean the patients do entirely.

NHS staff: please stop ‘blaming’ patients.

There’s a culture in the NHS at the moment where staff feel so hugely under pressure and undervalued that they spend most of their time on the defensive. This means that whenever they feel like they’re remotely being criticised for their work, they instantly try to defend their actions or indicate that it wasn’t because of their doing that something happened. And, in a lot of cases, the easiest person to ‘blame’ is the patient.

I don’t mean staff are directly saying ‘it’s the patient’s fault’, it’s a bit more subtle than that. I’ve talked about this with a few senior staff members and they agree that the NHS as a whole isn’t very good at acknowledging where and when things have gone wrong and tend to close ranks to defend the staff working in it. Which means nothing changes. And, to be frank, if staff took an extra 30 seconds to communicate better with their patients sometimes, a lot of issues could be avoided.

I had to ring an ambulance the other night and went to a&e. Here are some examples I heard that night, either said to me or to other patients.

‘It’s not my fault that you’ve been waiting a long time’

True. It wasn’t that specific nurse’s fault that this patient had been waiting a long time in the corridor. But at the time the patient was complaining, that staff member represented the department so should have handled it better.

Think of it a different way. I’ll use my own care as an example. The ambulance took a full history and handed over to the ambulance triage nurse, who put it on her computer, checked with the doctor what bloods I needed doing and then came to draw blood. Then I got put in the corridor for an hour while the bloods were sent to the lab. I know from past experiences that blood tests take an hour minimum to come back, so there would be absolutely no point in me sitting in a cubicle waiting when that space could be used for another patient. As soon as my results were back, a doctor would review them and move me to a cubicle when one came next available. Like I said, I know this is what happens because I go to a&e a lot. But this wasn’t communicated to me at any point. So if the same thing had happened to the patient who was complaining, it would feel like she’d just been abandoned in the corridor for ages because no one had told her any information to make her think otherwise. Had someone filled her in, she might not have started singing ‘why are we waiting’ loudly, which just annoyed everyone.

People sometimes just want a bit of empathy. They know it’s no one’s specific fault but saying something like ‘I’m sorry you feel that way. What information have you been given?’ Or ‘I don’t know much about your case, but I can check where you are in the queue if you like’. Simple gestures that take 30 seconds go a long way.

‘You didn’t tell me that…’

‘You take X medication’, ‘you used to experience x’ and ‘someone had already been to see you’.

Maybe it’s because you didn’t ask the right questions. Or I’m feeling ill so I forgot. Or because I’m not a mind reader and I don’t know who’s supposed to be doing what for me since everyone’s missing out steps communicating with me in their haste. Medics are quite happy to say that all patients lie and aren’t as superior in their knowledge about their health as they are when it suits them, except for when they’ve made a mistake or missed something. Then they start saying ‘you didn’t tell me that…’ to avoid being told off by their boss.

Everyone naturally tries to cover themselves when someone changes their story as soon as you get your boss, I used to do it in teaching too. But if you flip the ‘blame’ onto you, you keep the patient on side, which is important for future interactions, and also get the point across to your boss that you didn’t have all the information you needed at the time to make the right decision.

Eg sorry, perhaps I didn’t make myself clear earlier. I should have asked you about <whatever it is they didn’t tell you>.

9 times out of 10, the patient will also apologise too before giving their answer, even if it’s just because it’s a very British thing to do.

‘Why didn’t you tell me that no one had taken your cannula out?’

This was said to me by a nurse who bustled into the room and said ‘right your cannula has been taken out so you’re free to go’ in a ‘why are you still here taking up the cubicle’ tone of voice. I lifted my arm up to show him it hadn’t been removed, which he ignored, so I told him as well. He kind of rolled his eyes and said ‘why didn’t you tell me no one had taken your cannula out? I’ll do it now’. Well, possibly because:

– at no point had he introduced himself to me as my nurse. So how would I know to tell him specifically.

– if I’d asked another nurse or someone at the desk, I probably would have been met with ‘it’s not my fault your nurse hasn’t had a chance yet. You need to tell your nurse.’ Or a rant about how short staffed they are and how little time there is.

What could he have said instead? ‘Oh. Sorry, I’ll do it now’. Simple. Fewer words and less likely to get any kind of irate response from the patient. Saving time everywhere.

‘You should have applied pressure to it’

When the nurse came back to take my cannula out, he basically just ripped it out of my arm. I’ve had lots of cannulas so I know that the way he did it is not the way you should do it. I could have done it the way he did it, so basically he was as useful as a walking sharps box. I might sound harsh but I’ve had him before and he was just as incompetent then.

Anyway, we left and it wasn’t until I got to the main entrance that I realised that I was bleeding through my jumper sleeve, so we had to go back in. I knocked on the door of triage and a nurse took one look at it and said ‘you should have applied pressure to it’. I had, actually, like I said, I’ve had a lot of cannula. But if it’s ripped out of my arm rather than removed sensibly, this is clearly the outcome.

Besides that, why assume that I was the one who’d done it wrong and blame me. Why didn’t she at least say ‘did you apply pressure to it?’ and phrase it as a question. Surely she should be worried that someone else hadn’t done their job properly or needed better supervision? Or, some patients would be squeamish by that amount of blood, so where was the empathy? And despite my entire forearm dripping with blood, she didn’t offer to give me anything to clean myself up with, she just stopped the bleeding and reapplied gauze. I’m a practical patient and not easily phased, but even I was shocked by the lack of compassion. I hope someone did actually clean my blood up from the floor though.

You might be thinking that these are just one offs, or people were just particularly busy or I’m being hyper critical. But I’ve seen a lot of the staff saying these things before and am fed up of being made to feel like it’s my fault for things when it’s not. What you might not appreciate, is that a passing comment from one person doesn’t take into account that all of these negative interactions add up. And instead of feeling like hospital is a safe place for me to go, it actually makes me super anxious. I walk away quite often beating myself up, thinking that *I* should have handled things better, when in fact it’s not down to me because I’m not a qualified health professional.

Some things are the patient’s fault. And I appreciate patients can be annoying. But people are far more likely to do what you want them to do if you’re not making them feel bad for being there or if you’re trying to blame them for something because you’re on the defensive from the second you start shift. Individuals might not be to blame for flaws in the system or other people. But those things are definitely not the patient’s fault either so we shouldn’t be blamed for them.

Seeing a New Doctor

Tomorrow I see another consultant. It’s been a couple of months since I’ve seen a different consultant/team from my ‘normal’ ones, so I don’t really know what to expect from this one. I do, however, nearly always feel the same before going to see someone new.

I don’t have a clue how this specialty works.

The problem with having a rare illness is you have to do a lot of reading about it and get clued up, mostly because you’re essentially completing an a-level equivalent in science by just turning up to an appointment. The last time I saw my endocrinologist he said ‘I’m really impressed you’re following this because I tried to explain it to some Junior Doctors and they glazed over way before you did‘. Tomorrow I’m seeing a respiratory/sleep consultant. I’ve seen many respiratory doctors and have had pretty much every respiratory test under the sun, but this one is different, they never involved sleep before, and I don’t know what to expect. My adrenal insufficiency makes it hard for me to keep up in conversations at the best of times, but I feel like I should have prepped more for the appointment, even though there’s literally nothing I need to do except turn up.

I want to feel hopeful but don’t at the same time.

I would love it if he turned around and said ‘aha this is what it is and this is what you need to do‘. However, the likelihood is he will order tests or studies or ask me to trial something. So there probably won’t be any answers tomorrow. But after getting about 4 hours sleep on average a night for the past 3 years, I would love to get a good night’s sleep! So part of me does feel hopeful deep down, even if I know it’s an unrealistic expectation.

Hopefully he won’t call me ‘medically interesting’, ‘an enigma’, ‘not normal’…

People get excited when they read my diagnoses and tests results because my body basically does the exact opposite of what it’s supposed to do. But I wish my body would cooperate and read the textbook properly before appointments so that I don’t have people sitting there telling me they’ve never seen one of me before!

I hope he knows what adrenal insufficiency is.

The last new consultant I saw didn’t have a clue so the first 20 minutes of the appointment was me explaining what it is and her asking questions. Which is really frustrating because the appointment should be about them asking me questions to work out what’s going on rather than me explaining a diagnosis I already have. I get it, they need the info to do their job, but they could read up a bit first.

I hope I can answer the questions I’m asked.

I ‘forget’ that a lot of the things I put up with each day aren’t ‘normal’ until my husband or friend interrupt and say ‘actually, this is what happens…’

I’m worried he’s going to send me away without any help.

This stems back to pre-AI diagnosis where a few medics told me it was ‘all in my head’ and I was having to fight hard to get help. So I always worry that new doctors ‘won’t believe me’ when I describe my symptoms and I’ll have to convince them.
I don’t know what’s relevant to him.

I have a complex medical history. I can’t remember every hospital admission, consultant, medication etc because it’s impossible to. I have no idea what he’s going to want or need to know though. Every time I see a new Doctor, nurse or team, I have to go over my medical history from the start with them- it’s a normal part of accessing healthcare, but it’s really hard to know which bits to include or exclude. I’d be there all day if I told the whole story from the beginning!

It’s an early morning appointment and I really struggle in the mornings, so I’m worried about managing it.

Hospitals involve a lot of walking, noise and having to function. It’s a lot for me to be able to physically manage, never mind the actual appointment itself. I’ll also find it stressful going there, not consciously stressful, but subconsciously enough that it’ll trigger something adrenal. It’ll wipe me out for a while afterwards, more so if the appointment isn’t a positive one.

I do feel positive about the appointment because it should at least help rule some things out at some point, which can sometimes be as helpful as getting diagnosed with something. It also helps that this one doesn’t (or at least I’m not expecting it to!) involve a life-threatening condition, which takes the pressure off ‘finding an answer’ before I keel over. I’ve had some good experiences at this hospital, and, like I said, I have no idea how this speciality works, so I’m going to try going with the flow at the appointment rather than working out everything that could go wrong in advance!

Ordering Repeat Prescriptions

I hate ordering repeat prescriptions. It’s mostly annoying more than anything else, but it should be really simple. In most cases, you tick the boxes of the things you need, hand it in to the reception at your GP or your local pharmacy and then pick it up from your pharmacy 48 hours later. I’ve had problems ordering prescriptions pretty much since I was diagnosed with Adrenal Insufficiency, mostly because of ‘computer says no’ scenarios.

I have 19 items on repeat every month, which don’t all run out at the same time, meaning at one point I was having to work out which things ran out when, which was confusing for everyone. The GP computer says no to lots of things, for example, it won’t issue cocodamol and tramadol on the same day but will if you put them in on separate days, and it nearly always refuses Hydrocortisone. But the receptionists can’t override the computer because they’re not medically trained. So my GP sorted it so that I ring the surgery for a telephone appointment whenever I need a repeat prescription, so that I can talk to a doctor and they can issue them.

This works well, except for Hydrocortisone. Sometimes I need to double my dose, which I can do myself without talking to my GP, but obviously the tablets run out quicker, so I have to ring and ask for more more frequently. If I talk to my GP, it’s fine because she knows me really well. If I talk to anyone else, the conversation usually goes like this, even if I’ve seen them before. (note that I appreciate the doctor is just doing their job and being cautious, but I’ve been having this conversation twice a month at least for a year now).

Why do you need more hydrocortisone? You only had some recently. Because I doubled my dose when I had a virus/was sick/admitted to hospital…

Why did you double your dose? Because that’s what you do when you’re sick, you have to stress dose.

What’s stress dosing? Click the link if you want an explanation 😉

Who told you to stress dose? No one/hospital if I’ve been admitted

Aren’t you supposed to check first? No, not for a double dose.

What dose are you on now? I tell them what numbers e.g. 20/10/5

Hang on, when do you take that? 20 at 8.30, 10 at 12.30, 5 at 17.30

That’s not what the computer says you take. Yes because I’m tapering

So what should you be taking? My baseline is 15/7.5/5

Depending on who it is, when will you come off hydrocortisone? Never, I’ve been told I’m taking it for the rest of my life.

When will you be back at your baseline? I tell them an estimated day. There’s usually a pause while they try to work out the maths of how many to give me

Do you only take 10mg tablets? Yes because 5mg aren’t available on the NHS. Another pause

ok well I’ll give you 90 tablets to cover the double dosing and then you need to put in your normal repeat as usual. Because 5mg tablets aren’t available, the maths is way to hard to work out 2.5 and 5 multiples quickly to give me the right amount, especially as it’s a taper dose. So they usually issue my normal prescription amount anyway.

Except when I go to put in my normal prescription a couple of weeks later, I have the same conversation again… The GP is nice. They’re just doing their job. They have to make sure that I’m taking my medication properly, I do appreciate that. But they’re also supposed to know about my care, and I talk to them twice a month minimum and go to the surgery at least once a month, so I’m ‘known’. This particular doctor has also admitted me to hospital twice because of my AI, so definitely knows my case. It also makes me feel like I ‘know more’ than they do about my condition, which makes me wary when I do need advice because I’m not sure if they understand it fully if they don’t know about baselines and stress dosing.

Like I said, it’s a minor irritant and not really a big deal. But when I have to explain my condition over and over to every healthcare practitioner I meet, even the ones who speak to me or see me regularly, it gets a bit frustrating and lonely as a patient. I just want someone to understand without me having to justify myself every time!

 

 

 

To the A&E Staff

To the A&E Staff,

I wasn’t happy about being in Resus. Rationally, I knew why I was there and how it’s not (always) as dramatic as TV dramas make out, but I was anxious about it. At the time, I was blaming myself: being there felt like I’d let my condition get the better of me and I’d somehow failed to manage it. But the Emergency Department staff made a lot of difference that day, not just because you helped me get better.

I’ve not always had good experiences in ED in the past, largely due to my relatively rare condition. I’ve been told that it’s ‘all in my head’ and made to feel like an inconvenience. I’ve had to argue with many HCPs, trying to get someone to take me seriously. When I eventually got a diagnosis of Secondary Adrenal Insufficiency, I sometimes got reprimanded for ‘not having managed it well enough’ (it’s really tricky, in case you’re wondering). It’s hard to shake off these experiences, even if I know now that I hadn’t done anything wrong.

So, last week, I was really wound up when I was taken to Resus by the paramedics. The first thing which helped me was that everyone was really friendly. Every person who walked through Resus made eye contact with me and smiled. The Student Nurse introduced herself and told me I only had to say her name and she’d be right there with me- and she was, every time I asked, for the 3.5 hours I was there. I was obviously asked the question ‘what brought you to ED today?’, but there wasn’t even the slightest hint that it was because of something I’d ‘failed’ to do.

Instead, there was empathy. The Sister and Nurse in Charge laughed when I said that one of my ex-endocrinologists was pretty adamant I needed to make people aware that I don’t have Addison’s, saying ‘it’s as good as, he doesn’t have to put up with it every day.’ The Junior Doctor said ‘this has really changed your life hasn’t it, it must be tough to manage’. I felt that people were concerned as to what would happen to me once I left A&E, as in, they wanted to make sure they ran labs and tests that would perhaps help my (wonderful) endocrinologist establish what else might be causing me problems, not just those which would help me temporarily. I’ve never really had that before- I sometimes feel like I’m ‘treated and streeted’ as quickly as possible, or moved to a ward to become ‘someone else’s problem’. There was a ‘bigger picture’ mentality.

Instead of being dismissed like I have been in the past, the Sister asked me to explain my condition to help her and the students. The Junior Doctor ordered an X-Ray after listening to what I said about my chest. The (slightly scary) SHO went and found his Medical Consultant rather than just telling me I was wrong and that he was right. I felt reassured that other people were in charge so I didn’t have to be, but that they’d ask if they weren’t sure. I felt like my voice mattered.

Everything was effectively communicated, which sounds basic, but it doesn’t always happen. The Radiographer could have quite easily sorted the X-Ray and vanished, (like here), but he paused for a chat. A HCA brought my husband to me when he arrived, but still took the time to introduce herself and ask if I was ok.

The students and Nurses had an almost sixth sense- one of them would ‘appear’ when I felt worse but hadn’t said anything, or they’d arrive right before the pressure cuff started to inflate to do my obs. The Nurse in Charge was omnipresent and knew about all of her patients in detail. I felt completely cared for even when there wasn’t anyone physically with me.

I was treated with dignity throughout. When in hospital, I try to do things like getting dressed and going to the toilet myself- I’m stubborn, basically- but I wasn’t able to manage it that day. The student nurses were great: they stopped me feeling humiliated and calmed the ‘this is not happening, I refuse to let this happen‘ anger/panic I was feeling. They chatted to me, making jokes with me about their day (and my odd socks). The Consultant had to wait to see me while I was being helped, and he apologised if it had caused me any anxiety- never had that before.

I felt like the staff were ‘with me’ all the way. I didn’t feel like I was a patient number, I felt like a person. There was humour and reassurance when I needed it. The Nurse in Charge ‘celebrated’ with me when I was moved from Resus to Majors, like we’d achieved something. It felt like a weight had lifted, not just because I was feeling better, but because I felt like I wasn’t dealing with the situation by myself anymore, and there was a whole team sharing the responsibility with me instead.

In my previous A&E admissions, I’ve found individuals who have given fantastic care, but I’ve never felt as supported by an entire team as I did last week- it was the best care I’ve ever had in an ED. You helped me feel better, but not just physically, you did wonders for my mental wellbeing and the way I feel about my condition too.

To My GP

To My GP,

No offence, I don’t like coming to see you. It means I’m not doing well, I’ve tried everything I can think of, and I’ve run out of options. It means I’ve ‘failed’ somewhere. When I do come to you it’s because I’m seriously stuck and I need your help to work out the problem, or I’ve got a vague theory and need a prescription. So I always come to see you feeling anxious and that there’s a lot riding on the 10 minute appointment.

You’ve openly said before that my condition is beyond you and that I have more knowledge than you in aspects of it. Which I quite liked- I prefer it to doctors fobbing me off or ‘pretending’ they know what’s going on. When I came to you the other day and explained my (relatively) new symptoms and what I’d done myself, you said that you couldn’t explain them and you didn’t know enough about endocrine disorders to help me. But you’d try.

In the past, your (and other GPs’) default answer has been ‘ask your endocrinologist/respiratory consultant/nurse specialist/immunologist/whoever-else-ending-in-ist’. The last time you said that, I explained how frustrating it is being a patient in a system where no one knows what to do with you and you get ‘bounced’ between people. And, because of the way the system works, it can sometimes take a long time to get close to even a very small improvement in often debilitating or painful symptoms. Which is really tiring. You clearly listened to me last time, because you didn’t say that this time. You said you’d refer me for more tests before considering a different consultant, and that by the time those tests had come back, I’d have also seen my endocrinologist, who could weigh in his opinion.

This is a bit more proactive and feels a bit less like I’m being made to cope by myself, like we’re working together. Not just me going backwards and forwards between doctors, potentially diluting the different opinions, but a bit more unified in approach.

I like how you don’t tell me I’m stupid with my ‘theories’. You say ‘it shouldn’t work like that’, you get confused and go on Google, but I feel like you go away and think about it rather than assuming it’s me doing something wrong, or, like some other Doctors have in the past, assuming I’m making it up. I admire that when you don’t understand something, you ask me- like when I explained the Day Curve and Synacthen tests to you. Or if you’re not sure, you email someone at the hospital who might know. I don’t mind people saying they don’t know but they’ll try to help, I just really hate being told I have to ‘get on with it’ as a way of getting rid of me, when I’m already at the end of what I can cope with.

I like that most times I see you, you reiterate that I’m dealing with a complex condition really well. I appreciate the fact that you take time to reassure me after I’ve had a bad experience at hospital and think I’ve made a mess of things, that it’s not my fault, it’s the system. It gets really hard, and when I do come to you, I’m at a point where I need that encouragement. I’m really grateful that you’ll authorise treatment/things I need for home use with minimal fuss, even if the relevant paperwork hasn’t got to the surgery yet, because you know I don’t have the energy to fight with people, and that you’re happy to fight on my behalf. It means a lot to me to know that you’re completely on my side. I’m also pretty sure you won’t just ‘leave me to it’, that you actually care about the quality of life I have, and you don’t want me to be ‘just another number in the system’. I come to appointments with you feeling anxious, but 9 times out of 10, I leave feeling much better and like I’m able to pick myself back up again and get ready for round 9601 of whatever comes next. Even if we didn’t actually get anywhere in the appointment.

Photo: NIDirect