My week with the NHS: 19th November

I’m still in hospital from last week, which you can catch up on here

Monday

At middle of the night obs time, I got told I wasn’t allowed any water for the special endocrine blood tests as well as having to fast. This is even more tricky for me since I have diabetes insipidus, which affects the way I process water. So I feel permanently thirsty and need the toilet every 9 seconds.

Then, on top of not being able to eat or drink, I got told that I wasn’t allowed my hydrocortisone until after the tests. Which would have been fine if they’d done the test first thing like they were supposed to, but they didn’t. I kept pushing my buzzer and saying I needed them to take my blood because I needed my HC but the healthcare kept getting stroppy with me and telling me that people were busy. When it got to 2 hours late and I was feeling seriously ill and having to fight to keep myself conscious, I eventually cracked and cried and repeated my ‘you know I can die if you give me my drugs late and it’s 2 hours late now’ line. It’s amazing (and annoying) how quickly people take you seriously when you cry. The doctor came and did it straight away then! Why did I bother being polite and calm before then? Oh wait, because I have an illness where stress and confrontation can kill me… particularly if you’re withholding my drugs!

The doctor then struggled to get blood out of me because when I do fasting tests and haven’t had my HC, my veins clamp down. Which is another reason why it’s a good idea to do my tests at the right time!

Once I’d had the blood test, I was allowed to eat, drink and felt a lot more merry once I’d had my hydrocortisone. The endo I’d argued with on Friday came to see me briefly while I was eating my breakfast and said how he was ‘glad he’d revised his plan considering I’d felt ill over the weekend’. Which isn’t strictly true. More his plan wasn’t a great one in the first place and mine made more sense. But he said he was happy for me to be discharged from an endo point of view.

Then the gastro reg came to see me. She knew about AI, but kept focusing on the fact that my record says I have it from taking steroids for my asthma rather than it saying ‘secondary adrenal insufficiency’. Which isn’t that big a problem except for the fact that you can interpret it, like she had, to mean that there may be a chance of recovering some adrenal function. But there isn’t in my case. So it took a while to clear that up because not taking steroids isn’t an option. She said she doubted that I had a gastro problem like colitis because all my tests had come back fine and the ones that hadn’t she was fairly sure wouldn’t show anything. But she wanted a full colonoscopy as an outpatient just to make sure. I explained that I need to be admitted to hospital overnight to do the bowel prep because of having AI and the risks having diarrhoea brings and she said she’d sort it. She was also happy for me to be discharged.

So everyone had signed off on me and I was allowed to go home! Except things work slowly for discharge so I knew I’d probably be there until at least tea time even though it wasn’t even lunchtime yet. The doctor has to do his discharge summary and get that approved. Then the pharmacy has to sort your prescriptions and they have to come back. The more you have, the longer it takes. The nursing staff have to do their paperwork and need to take any cannula out and then finally you’re allowed to leave.

Except my nurse came back and said I needed to provide (what a word) one more stool sample before leaving and I couldn’t leave until I had. Seriously? I’d literally spent an entire week trying to stop needing the toilet every hour and now that I’d finally stopped I was being pressured into pooing for a sample?! Fortunately for me, having a shower always gives me an upset stomach because of the energy involved, even if I sit down. So I had a shower and lo and behold…!

They were serving dinner as I left. It was a bit odd putting shoes on for the first time in a week!

Tuesday

My phone rang with ‘no caller ID’, which I don’t tend to answer, but hospitals often ring you like that, so I kind of had to. It turned out to be the endoscopy department ringing to schedule the colonoscopy for the next week, which I thought was pretty speedy. Originally she said it would be Monday, but then I asked her if she knew I had to be admitted overnight and she said she didn’t. She said she’d ring back and when she did she said it had been scheduled for the Thursday and I had to report to the endocrine ward the day before at 10am to do the prep. I asked if I’d get a letter or anything and she said the endo ward should contact me but if they didn’t just turn up.

Saturday

I got an appointment letter through for my next endo appointment but it was with a different doctor (who I’ve had before) in the chronic fatigue clinic. What I guessed had happened is that they were struggling to find me an appointment within the normal clinic so had put me in a different clinic but still seeing an endo. But I thought I’d better ring next week and double check anyway.

I definitely hadn’t heard from the endo department so googled ‘colonoscopy bowel prep’ and found a patient leaflet online from another hospital which told me I had to stop taking some medications and eat a low fibre diet in the days leading up to my colonoscopy. I wasn’t entirely sure if the guidelines were the same everywhere but some kind of patient leaflet is better than none!

My first planned hospital admission

I’ve never had a planned hospital admission before. I’ve always been admitted in an emergency (many times). It doesn’t really make much difference because my hospital bag is always packed anyway and if I ring an ambulance or go to a&e, I take it with me just in case. So it feels a bit weird that I know I’m going in overnight!

Well… that’s the plan anyway. When I was in hospital a couple of weeks ago, the gastro consultant said they wanted me to have a full colonoscopy to rule that out completely. So I told every person who told me I needed one, that I needed to be admitted overnight for fluids and the bowel prep. The prep for it means getting rid of everything from your colon, which is a bit risky for people with AI because of the ‘stress’ in doing so on your body. And you can get dehydrated really easily which is also a big problem. So the surgical guidelines are an admission the night before for fluids and 100mg of hydrocortisone at the onset of bowel prep (the day before) and 100mg of hydrocortisone immediately before the procedure.

Except despite everyone rolling their eyes and telling me they knew, when the endoscopy lady rang to schedule it last week, she didn’t know. So she hastily had to try and ring people to arrange a bed while trying to reserve the spot on her list. She said the endocrine ward should contact me about their side of it with some more information and told me to eat a low fibre diet a couple of days before.

But no one did contact me, I haven’t had any patient info through about what a colonoscopy is or the prep I have to do and I have no idea if anyone from the endocrine ward even knows if I’m coming or not. So I’m just turning up to the hospital at the time that the lady on the phone said and seeing what happens. I googled colonoscopy prep and found a different NHS hospital patient leaflet online and followed that prep for the last couple of days, but apart from that, I don’t really know what’s going on!

So, actually, even though I’ve got a planned admission to hospital, it actually feels a lot less organised than when I go in as an emergency. I know how things work more- if they hang fluids and set it on X speed, I know I’m there for Y hours, for example. I may or may not have to stay after the procedure because I don’t know if I have sedation if that means I automatically stay (since that also is a bit risky for AI), but I don’t know if I get sedation for it anyway because it depends on what bit of the NHS I read!

We’ll see what happens anyway. I may or may not have a colonoscopy this week depending on the bed situation. I’m not particularly relishing the thought of it anyway so wouldn’t be sad it got cancelled, but I’ve psyched myself up for it now so just want it out the way!

My week with the NHS: 12th November part 2

You can catch up with the first part of the week here

Friday

I’m still carrying on with my 24 hour urine collection and fasting for my blood tests. Endocrine tests are a bit more time sensitive than others in that they have to be done so as to catch the hormones in the right window. So I was very glad to see the phlebotomist arrive bang on 8am to do them. And I could eat my breakfast at the right time too!

My new healthcare came in, gave me my chart and asked me to record everything I was eating and drinking. Much better for me not getting asked every 5 seconds if I’d opened my bowels yet and how much water I’d drunk. Some HCAs ask you, some just guess.

Being on the endo ward meant I actually got to see an endocrinologist consultant! However, we didn’t see eye to eye. The impression I got was that he hadn’t really looked at me and my chart because he asked me a few questions about my symptoms, said we were waiting for gastro input and that I should be fine back on oral hydrocortisone. I agreed with this so asked him what dose he was charting and he said 20/10/10, which is the U.K. standard stress dose for AI. This I didn’t agree with. My baseline is 30/15/10, that’s only a 10mg increase from my baseline and a massive comedown from 200mg a day of IV, which is what I’d been having. Unfortunately, I don’t think he wanted to lose face in front of his junior doctor because he was adamant that he was doubling my dose, which he clearly wasn’t. We argued a bit and he said I’d be in hospital until at least Saturday so he would ‘consider reviewing it if I wasn’t tolerating it’. Which is doctor speak for ‘I have absolutely no intention of reviewing it unless you’re dying, I’m just saying it to get you to shut up’.

It didn’t sit right with me so I buzzed my healthcare (who was fab) and said so. It’s a bit difficult when the consultant doesn’t see your way because they’re the top of the pyramid and they also hold all the cards- annoy them completely and you don’t get anything. But I also knew he was wrong. The HCA sent the junior doctor to see me, who was also fab. I asked if he was an endo (he wasn’t) and asked if he knew what kind of endo his consultant was. Which he didn’t answer so I knew from that he only had limited knowledge of AI. I asked him what his knowledge of it was and he said ‘how about you tell me your rationale and I’ll tell you if I understand or not’. He agreed to take it back to his consultant and came back 10 minutes later and said the consultant had approved my plan. So a bit stressful but I was right to pursue it.

My nurses were on the ball with my Hydrocortisone which made me very happy. They even brought it to me early to take on time if they knew they were going to start a job that they couldn’t leave when it was due.

I spent the rest of the day trying to work out the gossip from the prisoner and speculating what she’d done to end up in police custody in hospital. I’d decided that she was a criminal of sorts because I heard the police moaning to one of the doctors about the fact that they couldn’t get a scan organised for her until next week and how much money this was costing everyone. You’d like to think that if she was a victim of a crime they’d be a bit nicer!

My night healthcare came and took my chart off me saying she wanted to write down everything I was charging instead. Problem is, I realised that I’d actually been drinking triple what they were charting because people had just been looking at the level of water in my jug and seeing it go down, but not realising that I’d asked for 2 more jugs since they’d last been in. I tried to explain this to her but she didn’t get it.

Saturday

The consultant had charted my morning hydrocortisone dose at the wrong time but my nurses were happy to give me it at the time I wanted it (As per my endo instructions). I just needed the doctor to change it on my chart in case I got nurses who weren’t reasonable about it.

Saturday was dull. Gastro hadn’t been to see me on Friday because they’d been busy and there wasn’t anyone in at the weekend. I didn’t have a great day anyway because transitioning from IV to oral is always hard and I was struggling by now so I mostly slept. I did have a bit of light relief when the cleaner came in and told me that the lady was definitely a criminal because they were escorting her to and from the toilet.

The consultant on Friday had said aim for weekend discharge, I just didn’t know when. I assumed that as I hadn’t seen the doctor that I’d be staying another night. Unless a doctor charts that you’re ok to be discharged, you can’t be. And in my case, only a consultant can discharge me because I’m complex. So I was guessing someone else had come along since our conversation on Friday and said I needed to stay.

Sunday

This morning I woke up with a hypo. They’d been testing my blood sugars regularly in the day because I’m on steroids / some people think my diabetes insipidus is diabetes (it’s not, but I am reactive hypoglycaemic which no one has heard of), but I don’t usually wake up with a hypo. So I was force fed juice and glucose tablets.

I’d got to know the staff a bit by now so I asked my nurse for the day to read my chart and tell me what the latest was. She came back later in the day and said that it had said weekend discharge but the junior doctor (the same one from my endo review on Friday) had wanted to keep me until my 24 hour urine results were back before letting me go. But he’d also hoped gastro would have come to see me and they hadn’t so I could be discharged as long as I didn’t need any TTOs (prescriptions to take out). I did because they’d switched one gut protector to another, but in comparison to all my other meds (which have to get signed off by a senior pharmacist) it’s nothing, so easy for pharmacy to sort.

Meanwhile, one of my inmates, Mrs Kaur, was not enjoying having a prisoner on the ward with her and kept shouting at her. Except she didn’t speak any English so I can only guess what she was saying.

The junior doctor came to see me about 10 minutes after the nurse told me I could go home and said ‘I can justify keeping you here another night’. Which is doctor speak for ‘I can’t tell you what to do but I think you should stay another night. While you’re here, you’re taking up a bed and people have to treat you and you need to get to the bottom of this. And your obs aren’t great so you’re probably better off here anyway’. He also said that the specialised endocrine tests I’d fasted for on Friday had been put in the wrong coloured bottles so the lab in London wouldn’t accept them. It makes sense for me to do fasting tests in hospital because it’s pretty complicated trying to get me to do an early morning test, without having eaten and in a place (ie hospital) where they can get it from my blood stream to a blast freezer thing to a courier within 15 minutes. I hadn’t seen gastro yet either so I decided to stay.

Another junior doctor came to ask if I’d be involved in a research study. All they needed was my signature and the blood they’d already taken. Seemed pretty easy to me so I was happy to agree!

The first junior doctor came back with the right coloured test bottles and said they were the only 2 in the whole hospital and he’d spent ages tracking them down. But unfortunately he wasn’t in the next day and he didn’t want them to mess it up. So he asked me to hide them in my room and give them to the phlebotomist when she came, saying about the 15 minute window and the time sensitivity nature of it.

The police ended up chasing after the caterers because they took the tray away from the prisoner before they’d had the chance to count the cutlery they’d given her back. Quite what she’d have been able to do with nhs cutlery I don’t know, since it barely cuts food, never mind be used as a weapon, but it was entertaining anyway,

My night nurse this evening was one I’d had ages ago while on the endo ward, but was actually an endocrine nurse! Hooray! He got a bit excited too when he realised he actually had an endocrine patient to treat, although this dwindled a bit when he realised I wasn’t diabetic. I like him. Although my healthcare and him shared a language so that meant they spoke in that instead when at the nurses station which seriously hampered my eavesdropping for the night! Much better for patient confidentiality though…

My week with the NHS: 12th November

This week, I had no nhs appointments lined up and I had all my prescriptions sorted, so I was looking forward to a quiet week. It turned out to be pretty eventful in the end!

Tuesday

I’d had an upset stomach on Monday which got a lot worse by Tuesday. It wasn’t a bug or food poisoning, it was something annoying my endocrine system giving me diarrhoea, which is a pre-cursor to adrenal crisis. I’ve actually had it every day pretty much since May ish, but today it was really bad. So I rang an ambulance- I wrote a blog about it here

Short story of the blog is, the ambulance took me to hospital, I spent some time in resus before being transferred to majors and then eventually AMU, which is the assessment ward. I’d been reviewed by the a&e consultant, who had got the medical consultant down to review me, who declared me ‘safe’ (ie probably won’t die now) to be moved to AMU. He also said that my old endo was on call that night so they were going to try and get him to come down and review me because they wanted endocrinology to sign off on my treatment.

Because one of my admitting symptoms was diarrhoea, I was isolated in a side room in case I was contagious. I was pretty sure I wasn’t infectious, but those are the rules, so it meant I wasn’t allowed to set foot out of the room and the door had to be closed, and anyone who came in should wear aprons and gloves. I don’t actually mind being in a side room because it’s a lot quieter than being on a bay. Even if you get really considerate or calm bay mates (which you normally don’t- there’s usually one elderly patient screaming ‘help me’ and trying to escape), it’s still noisy with people coming and going all the time. I was particularly grateful for a side room when I was asked to provide samples every time I went to the toilet. Having to do that in a shared bathroom would be a nightmare.

Wednesday

I was pretty grumpy this morning because I’d asked many times for a doctor to review my hydrocortisone doses overnight, because they’d only charted my normal daily doses. Which were definitely wrong because I can’t go from being in adrenal crisis the night before straight down to baseline meds, particularly as I was still having diarrhoea. According to my nurse, the junior doctor just refused point blank to change it without a senior review and didn’t really get that senior review could take place at any time in the day and we needed a decision sharp ish otherwise I’d get more sick.

My nurse pulled some strings and I got put first for senior (medical) review, accompanied by a lot of junior doctors. It kind of became a little bit like an episode of House in that the junior doctors very enthusiastically started discussing potential diagnoses and tests. A little bit too gleefully considering the seriousness/death potential of some but I don’t think they realised I knew what they were on about. The consultant still wanted to rule out gastro but they were thinking outside the box and looking at what else could be happening. Some of the tests they wanted were ones I’d mentioned to my GP and she’d dismissed eg liver and autonomic system failure ones, but the consultant ordered them without me having said anything. So I at least felt vaguely clever! He switched me back onto IV hydrocortisone but only twice a day. I said I wasn’t convinced by this but he said it was fine.

A little bit later an endocrine registrar came to review me and overrode the consultant and said I needed to be on IVs 4 times a day and doubled his dose. I was a lot happier with this. She also said they were going to start testing me for some of the more rare endocrine disorders but it was very unlikely I’d actually have one, just they wanted to rule it out.

The rest of the day was spent asleep, collecting different samples of bodily fluids and pushing my buzzer and playing the ‘my hydrocortisone was due at X time, can I have it please’ game. It’s actually pretty stressful being so dependent on a med while in hospital because a lot of people don’t get the time sensitive nature of it. I always get round this by having a stash of tablets with me so that if it gets really bad I can say ‘I’m swallowing these now, I’m telling you so you can chart it later’. I also have a hydrocortisone refusal letter with me which the HCP has to sign or give me my hydrocortisone. They usually end up giving the drugs then because they don’t want to sign it. But it’s not the point really- I shouldn’t be made out to be an annoyance because I want my medication which stops me from dying at the right time.

I have a pack of my most recent consultant notes, my meds list, surgical guidelines and adrenal crisis pathway that I give to ambulance and a&e staff in an emergency. I was pretty impressed that this pack was in the back of my chart when I moved to the ward. It meant the endo reg could see exactly what my endo was planning and work with it.

On another positive note, I was kept entertained by an elderly patient singing a mega mix of primary school hymns most of the day. Then my husband came to visit in the evening. Lots of hospitals have all day visiting allowed now but this hospital still has set hours in the evening. We decided that even though no one had officially told me, I clearly was staying another night since I was still on IV HC every 6 hours. So my husband set up the (really extortionate) bedside tv so I could watch films.

Thursday

I was glad of having the tv because I didn’t sleep much thanks to my IV HC. To make sure I didn’t have another adrenal crisis, they’re at 6am/12am/6pm/12am. But it’s a bit of a weird feeling because you can’t sleep if you’re low on cortisol but you equally lose your natural daily body clock if you’re on the same dose every 6 hours. It’s like really bad jet lag.

Some of the test results had come back but a lot were still pending. A different medical consultant came to talk to me and said how they were all scratching their heads a little bit and that I’m a bit of a mystery. I was explaining about my persistent diarrhoea and he realised a bit late that he should probably have anti bacteria gelled his hands so he tried to casually do it with the pump at the end of the bed but failed miserably and slid sideways which amused me. Either way, it was decided that I needed to be on the endo ward really, as they’d be better off dealing with me there. Which meant another night in hospital.

Two nurses came to move me after lunch. Nurses don’t tend to move patients in this hospital, porters do, unless they’re worried something might happen on the way down. But I felt ok so I’m guessing it was just precaution. I was put in another side room for infection control but this time with no tv! It’s a lot more peaceful on this ward except for a woman sobbing constantly next door. She got louder the more she was ignored so I’m guessing she was mostly after attention. I still felt sorry for her though.

I tried to ask my nurse what the plan was and she said ‘IV hydrocortisone’, which didn’t sound like much of a plan to me. Me and her didn’t get along though because we kept arguing over the fact that she was 45 minutes late with my IV HC most of the time. Turns out she was new and didn’t really know an awful lot yet. You’d think an endocrine specialist ward would appreciate this though… A doctor came in and said I had to do some fasting tests and a 24 hour urine collection as well as more stool samples. So basically collect everything I weed for 24 hours. I’ve done one of these before and they’re a bit faffy (catching your wee and then transferring it into a bottle is always fun) but it’s doubly hard with an upset stomach! Again, no one had said how long I was staying, but because I wasn’t due to finish the 24 hour urine thing until Friday night, I’d be in until Saturday at least.

Most of the patients on the ward were elderly and there because they had nowhere else to put them, so I was a bit of a novelty actually being an endocrine patient! However, the nursing staff weren’t endocrine specialists on the night shift since I could overhear the doctor having to explain what cortisol was and why they needed to be checking my BP and blood sugar. I suppose at least they asked but it didn’t fill me with confidence!

Basically I spend a lot of time eavesdropping in hospital to entertain myself. Usually it’s just me overhearing stories and sussing which patients the nurses bitch about or who keeps trying to escape. But at about 11pm, the police showed up with a female patient. It was all a bit cloak and dagger and the curtains got pulled round her bed but the police were there all night guarding her. I wasn’t sure if she was a criminal or a crime victim (yet) but it gave me some kind of entertainment anyway! Being in quarantine, I couldn’t keep going for a wander outside so it made finding out what was going on more tricky!

That’s enough for one post, I shall cover the rest in part 2!

Junior Doctors Part 2

During a hospital admission in August, I wrote a post about some junior doctor encounters I had (you can read it here). Now that I’m back in hospital, I’ve had some of the same junior doctors, so I thought I’d write a brief follow up post.

It’s quite nice seeing some of them again because they’re still enthusiastic, but they’re more confident. So a lot less counting themselves in when stabbing me with needles, and a suggestion of ‘can you go tell your consultant X please’ isn’t met with a rabbit in the headlights terrified stare. But more a shrug and an ‘alright then’. They also have a bit more of a sense of humour, which I like!

They’re less scared of admitting when they’re wrong, or at least they’re a lot better a covering up their gaps in their knowledge. I was impressed (and amused) when one doctor said ‘how about you tell me what you’re thinking and I’ll tell you if I know what you’re on about’- at least he was prepared to learn if he didn’t know after my rationale, but he kept up pretty well!

Before, rules were rules, and that was that. If it deviated from the protocol, they weren’t happy to do it. Now they know how things work a bit more, they know which rules you can bend slightly if in the best interest of the patient, and which you can’t. They’ve also now either earned (or burned completely) the respect of the nursing staff.

One slight negative, is that their enthusiasm needs to be curtailed slightly sometimes. For example, it’s not a good idea to look visibly excited when talking about potentially serious medical conditions, even if it’s just throwing ideas about for diagnostic tests. It was a bit like an episode of House. Which, because I’ve watched a lot of House and read a lot about my conditions, I can understand even if they use medical jargon. And a look of fascinated delight on your doctor’s face (because it’s rare and interesting) perhaps isn’t the best way to introduce serious illnesses to the patient. BUT because I’ve spent a lot of time being called a ‘medical mystery’ (and watching a lot of House), I’m sensible enough to know that just because someone is testing for something doesn’t mean I actually necessarily have it. But it’s still not a wise move!!

The teacher in me liked seeing how the junior doctors had made progress. Especially the ones who were on my case last time. 🙂

Blue lights & resus

First of all, a couple of disclaimers before anyone potentially panics. I’m quite clearly still alive 🙂 Blue lights and resus doesn’t (always) mean you’re dying or like on tv where there’s lots of people trying to crack your ribs and intubate you or you need to actually be resuscitated. It can mean, like in my case, that they’re worried enough about you that they want you in hospital fast, being watched by people closely until they know you’re out of the danger zone. Because there is the *potential* of things going wrong and they want to be ready in case.

I don’t spend a lot of time in resus *touch wood*. I think I’ve only been in there 3 times.

I’d been feeling ‘weird’ for a couple of days and then on Tuesday felt weirder and got a lot of diarrhoea, which is a bad sign for adrenal insufficiency. You’re supposed to go to hospital if you have more than 4 bouts in a 24 hour period, but I’d be there all the time at the moment with how variable I am. Plus I have a reasonably high tolerance to it in comparison to vomiting, where I go in a lot sooner than the guidelines. Besides, I just felt weird. All my bp and heart rate and blood sugar numbers were all fine and I checked my urine for infection and it was all fine. But I just had a feeling that something would end badly and I was by myself because my husband was away for work. I didn’t really feel like passing out by myself because I left it too late, so I eventually rang 999.

My newly reinstated red flag must have been working because the ambulance came on blue lights. Just because it comes on blue lights, doesn’t mean it takes you to hospital on blue lights. But the crew took one look at me, gave me my injection I’d been setting up, didn’t bother doing obs at home and said ‘get in the ambulance’. That’s not what normally happens. The crew asked if I felt I needed blue lights and I said no, because I didn’t feel that terrible. But then they did my obs, which had got worse since I did them and overrode me and we went with blue lights and sirens (called ‘alerting to hospital’) with a pre alert to resus.

A pre alert means the crew rings ahead to the hospital to let them know you’re coming in. So they give over your details, your obs, any meds they’ve given you and an ETA. This then gets fed to the team of doctors and nurses and then they’re waiting for you when you get to hospital. All the stuff that would usually get done at home gets done in the ambulance instead eg noting your meds, giving you meds like anti sickness, more obs.

This is probably pretty scary for most people but being scared really doesn’t help me because the whole reason I’m in an ambulance is because I don’t make the stress hormone, cortisol. Plus it was a bit of a relief not having to sit in rush hour traffic!

We got to the hospital and the crew couldn’t get through to ambulance triage because they didn’t know the code. I did though, which the paramedics found hilarious. But it hasn’t changed in 5 years and it’s pretty easy!!

Sure enough, the resus team was waiting for me. Resus is a strange place. Normally, you go into ambulance triage, one paramedic goes to check you in, the other stays with you. Nurses come and repeat all the questions the paramedics asked and you get some initial bloods done. This takes about 20 minutes minimum, more if it’s busy. In resus, things happen fast. As soon as you hit the bay, the paramedic starts to hand over, a nurse is getting you into a gown, a doctor is trying to get a canula in so they can get blood out and meds in fast (although he failed a few times because I’m hard to canulate), another nurse is doing your obs and hooking you up to the relevant monitors… lots of people are talking to you at once. It’s all very calm and efficient but it’s *a lot* at once. And I say that from being very used to hospitals and routines!

Quite often, there’s some kind of plan already in place, which is what the pre alert is for. So they’d already decided to give me more IV HC and what bloods they wanted. Then we needed to wait for those emergency bloods to come back before deciding if I needed to stay there or could be moved to majors. In the meantime, a doctor or a nurse sat with me the whole time monitoring me. If I needed an X-ray, that would be done in my resus bay with a portable machine rather than moving to the X-ray dept.

The bloods came back fine except for my lactate being high. At this point, people started referring to it as an adrenal crisis. I tend to not say ‘crisis’ lightly because to me that’s really serious and I think I’ve only ever had a couple of actual adrenal crises, even though I end up in hospital a lot- I go to prevent crisis from progressing. There was a med student on my team who was asking some pretty good questions, so I explained it to him while my doctor was busy working out what to do with me. Basically, it’s really hard to diagnose an adrenal crisis *if* you’ve already had your emergency injection. The emergency injection stops you from dying, but it means that your electrolytes and cortisol blood tests they then do at the hospital only usually show that you’ve had your rescue drugs. It doesn’t show what happened before. So in theory, my bloods should come back as ‘normal’ because of the injection. Unfortunately, there’s no way of checking before you get to hospital.

If my bloods were still terrible, then it’s crisis for sure. No question. But they weren’t. The a&e consultant was pretty sure I was ‘safe’ to be sent to majors, but wanted a medical consultant to have input. He came down and sat with me for an hour, declared me ‘safe’ (ie she’s unlikely to die now) and I moved to majors, which is in the main a&e.

After that, things slowed down. I didn’t have the constant monitoring, where blood pressure and heart rate and rhythm are constantly checked. I didn’t have a doctor or nurse sat with me the whole time. And I was allowed my belongings back so I could actually text someone to say I was still alive! This is more my usual experience of a&e and where I usually go.

From arriving at the hospital to being moved to an assessment ward was about 3.5 hours. I spent just over 2 hours in resus and about an hour in majors. From me ringing the ambulance to being put on the ward was probably about 4 hours. This is an example of the system working well!

I’m so glad they sorted my red flag out for me last week after the system didn’t work so well for me! Goes to show you don’t know when you’re going to need it, since all I had as an indicator was ‘feeling weird’!

My week with the NHS: 5th November

Monday

I need to ring and order some more prescriptions but I can’t face having to use the phone and sort my list out today, so I decide to put it off until tomorrow.

However, the GP surgery ends up ringing me anyway because the letter about my red flag that she sent to the ambulance service on Friday (because they wouldn’t accept it coming from me) hasn’t been accepted either. Even though it was sent from an NHS email, because it’s not the practice manager or a doctor, they won’t accept it. Seriously? This is bureaucracy at its finest here. Or someone trying to justify their job. It’s bad enough having the medical condition, let alone when you have to prove it so you can avoid dying the next time you call 999. So I have to go over the info again so that it can be sent from the practice manager’s email.

Tuesday

I still don’t want to use the phone so ask my husband to ring and put my repeats through. The doctor rings me soon after and asks if I want 30 or 90 hydrocortisone tablets. There’s 2 repeats set up because one should be my regular repeats and the other should be for stress dosing only. But it doesn’t work like that with my current plan from my endo and the GP doesn’t know what my current dose is anyway, so I’m just alternating between the 2 types of prescription. That way the computer doesn’t realise that I already had some 10 days ago because there’s 2 orders on there.

Amazingly, I get an email back from the ambulance service to say that my red flag has now been renewed for another year thanks to evidence provided by my GP. It only took 2 months of emailing and ringing though…!

Wednesday

I’m seeing my endo the next day which means I have to do ‘homework’. He can’t see all of the tests various people have done because I’m in different trusts so I make sure I have copies of the scans to give him. I also update my med list because he’ll ask for it and it’s too long for me to remember off the top of my head.

Thursday

Today is endo day. He has a few people from different job roles that he’s teaching in with him. I don’t mind because the more people who learn about adrenal insufficiency the better. But it does make you feel like you’re in a zoo slightly! I did feel a bit proud of myself when I knew more than they did about my blood tests though. He reviews my blood tests which are mostly fine and I tell him about my trip to a&e and my heart palpitations. I’ll write another post about the ins and the outs for those who are interested. He says to come back in 6-8 weeks once I’ve done some more bloods and completed a 72 hour holter test.

A 72 hour holter is a recording for that time of what your heart is doing. I’ve had a 24 hour one before in a different hospital and it meant having to wait a long time to have it. Except this hospital is great because I went to the cardio department to do the ECG he also ordered and they said they could fit me with it today.

An ECG shows your heart rhythm/beat. You have to take your tops off and then they stick pads over your chest, hands and feet and attach wires to them which feeds into a machine. You have to lie very still and then it draws a wiggly line of your heart. It only takes a couple of minutes. Normally staff don’t care about your dignity having to strip off completely, they just tell you to do it, usually rather abruptly. Today the lady said I could ‘drape my top like a blanket’. Yeah she still saw my boobs eventually but it was nice someone cared about it for a change.

Then another member of staff came to fit me with the holter. This was fewer wires, only 3 this time- 2 on my chest and one under my left arm. The wires attach to a little mobile phone sized machine which you then hang in a little pouch thing around your neck. It turns itself off automatically after 72 hours, but because it’ll be over the weekend, I got told how to take it off and where to drop it back. They kept saying how I wasn’t allowed a bath or shower for this time, in such a way that it made me think that lots of people must moan about this fact (it’s not that long) or that people have broken the machine by getting it wet. You also have to fill in a diary about any symptoms you notice you have so they can compare it to the tape. It’s an easy test. The most annoying thing is the pads with the electrodes on are super itchy on my skin.

Once it’s fitted, I have to walk back down to endocrinology with my ECG print out for my endo to review. He does it there and then (also doesn’t usually happen) and says it’s fine.

All my tests are done so we can go home. My husband goes to the pharmacy to see if my prescriptions have been done, which they have. Everything is there and it’s the right brand of hydrocortisone. This makes me very happy! Then I remind myself that actually I shouldn’t be commending the people involved because all that’s happened is that I ordered my repeats and someone fulfilled my request. No one deserves any extra credit for this because it’s like the bread and butter of health care but because it nearly always gets messed up and I end up chasing, it’s a novel experience someone doing their job correctly/ the system working properly the first time.

Saturday

The holter test box stared beeping randomly! It wasn’t low battery so I’m assuming it was some kind of signal interruption since it only did it after I moved. But no one told me what to do with it or what the beeping means, so I’m hoping it’s still recording ok.

Sunday

After 3 days of the holter test, I get to take the monitor off. Freedom! They’ve given me an envelope to put it all back in and my husband will drop it off on his way to work on Monday.

‘Customer Service’ and the NHS

This is probably going to end up being a rant. You’ve been warned!

One of my Facebook friends had a negative experience at a large supermarket chain and wrote a post explaining it on their Facebook page. Because I’m a Facebook stalker, I read it when it appeared on my news feed. (If you’re reading this, sorry you had that experience and this post isn’t remotely a dig at you, it just got me thinking!).

The gist of her complaint was she’d ordered something both online and in store but had made a mistake with the sizing and wanted to do a simple exchange. Because of the way that the system is set up, this wasn’t possible and would involve a big faff on her part to rectify it or to even just return the original item. But, to make matters worse, people weren’t communicating with either her or each other properly, no one seemed to know the store policies, and she got told to do different things by different people. She patiently hung around waiting to speak to someone but they didn’t bother waiting for her when she had to take her child to the toilet. In her post, she wrote that she left the store in tears because of the frustration and stress this caused her.

She was right to complain. It might not have been the individual people’s fault, but the system is stupid, it doesn’t work for anyone and it caused her a lot of stress and hassle.

How does this fit in with the NHS? Well, I was reading her post after having had a bit of a crappy week with NHS bureaucracy at its finest and was thinking ‘why do we let the NHS get away with this when we don’t when it comes to other sectors?’.

75% of my life is negotiating the stupidness that is the NHS system. It might not be down to the individuals, but it’s frustrating. Recent problems in the last fortnight include:

– an outpatient appointment not being booked and having to work out which department did it wrong. Both saying different things. But me as the go between.

– having medication withheld in hospital because a doctor reviewed my chart wrong. But not coming to speak to me about it.

– having to do 2 of the same tests because the NHS doesn’t work across county borders and both doctors wanted them.

– the pharmacy blaming the doctors and the doctors blaming the pharmacy for lost prescriptions

– the ambulance service refusing to accept a letter from me (signed and dated by my GP) because it didn’t come directly from her.

– the wrong medication being ordered but me being told it was my fault the wrong thing had got ordered

-my GP telling me to ask my endo because she doesn’t know. And my endo (who I love) getting frustrated because he’s not my GP and shouldn’t be doing her job. I like my endo through, but it would be a differing story if he had a lot of doctors’ attitudes of ‘you’re not my problem’.

A lot of you might be thinking ‘the nhs is overworked and underpaid/give them a break because you don’t know what else is going on/ it could have been that one person doing it wrong/it could be a one off’. Except these aren’t one off occurrences, it happens all the time (that’s a lot for a fortnight) and I’m regularly made to feel like an inconvenience because I’ve asked someone to help me access basic care. The things I’ve mentioned aren’t to do with the complexities of my health, they’re just the normal, every day things I need to do like have an appointment booked, do blood tests and get my prescriptions. I regularly have little rants to my friends and my family and I quite often have to say ‘ok but if you don’t listen to me, I could die, so please listen’.

My friend left the supermarket in tears because she felt so downtrodden by it all. The supermarket responded to her complaint by apologising and offering a gesture of goodwill in a timely manner.

What happens when I complain? I get told to put up with it verbally, quite often. If it’s a written complaint, it takes a long time to get a reply and even then it’s mostly people covering themselves. The NHS is particularly bad at closing ranks and not admitting its faults- the staff protect their own (commendable), but to the point where they’re not actually thinking about the patients’ experiences anymore and a lot of genuine patients encounter problems because no one is willing to admit the flaws in the system in the first place.

I can count the amount of times someone has apologised to me recently on one hand. Not even a ‘sorry you feel that way’, which we all know is code in customer services for ‘I personally didn’t do anything wrong but you deserve some kind of apology’. And as for a gesture of goodwill, the general attitude is that the NHS is ‘free’ so I should just put up with it.

But it’s exhausting. And it isn’t fair. And we don’t put up with it in sectors like retail. It might be the stupid system rather than individuals but it doesn’t matter which way you look at it, I shouldn’t have to be chasing around trying to get basic care and using phrases like ‘if you don’t do this I will die’. I wish I was over exaggerating.

The other thing I’d like to point out is that my friend made a mistake and no one was willing to help her rectify it. Even though it was a simple mistake and easy to rectify. If I make a mistake with the management of my illnesses, I’m regularly ‘told off’ for having ‘done it wrong’, even if I have been asking for help. Which all adds to the stress of accessing healthcare.

It makes me feel sad that a supermarket chain seems to care more about the emotional well-being and customer experience than a healthcare system, where the priority should be compassion, care and effective communication (yes I’m quoting 3 of the 6 Cs). Even if it isn’t an individual’s problem, why do I repeatedly encounter the same problems and receive the same (often hostile) response?

When you’re chronically ill, everything takes up extra energy you just don’t have. It would be nice to at least experience some of the compassion the supermarket offered my friend (even if it was a bit delayed) when I’m trying to navigate the bureaucracy that is the NHS.

I don’t like ending on a negative so here are some things that HCPs and admin staff could do which would help.

– apologise. Even if it’s not your fault, at least say ‘sorry you were made to feel that way’.

– empathise. If it’s frustrating, acknowledge that.

– don’t cut the patient off mid sentence. Efficiency is everything, I get that, but when you’ve been passed around a million people in a phone call chain and every single person cuts you off before you finish your explanation, it’s really, really irritating.

– say if you can’t help but offer a way you can. Find a phone number for me so I don’t have to find it myself. Say you’ll ring someone for me is even better. Give me some options, not just ‘not my problem’.

– if the problem keeps repeating itself, actually try to change it for next time!

– tell me what type of deadline I can expect on things so I’m not getting anxious about things for days on end. And so I know when I need to chase people.

– actually ring me back when you say you’re going to

– don’t make out like I’m the problem. And never tell me ‘you’re not my problem’, which I’ve heard a lot.

– don’t laugh at me.

– don’t moan about how overworked or underpaid you are. Be professional. You don’t know what I’ve been through and vice versa, but I’m not being paid to be a patient, you’re being paid to do your job.

I like the NHS because it’s free and it’s kept me alive. But if I expect good customer service from a supermarket, I should expect a million times more from something which has an influence over whether I live or die on a daily basis.

My week with the NHS: 29th October

Monday

I did some calculations and realised that even with the extra hydrocortisone I’d ordered, I still wouldn’t have enough to stress dose again if I needed to. So I rang the surgery to order some more.

Then I went over to the pharmacy to swap the hydrocortisone brand they gave me on Friday, which I can’t take, to the brand I can take. I got a bit irritated (although didn’t say anything) when the pharmacy staff were discussing how I don’t ‘like’ the brand that the wholesaler delivered, which is cheaper for the NHS. It’s not a question of whether I like it or not, the pharmaceutical company say it’s not safe to break their tablets into 4, because the compound mix can’t be guaranteed. If the NHS gave me 5mg tablets rather than 10mg tablets, then I wouldn’t have this problem and could take any brand they wanted. But they only provide 10mg even though 5mg exist.

Also at the same time, I did the blood tests for my GP. It’s a little bit frustrating that some of the tests she requested were the exact same as the ones I’d done for my endo last week. But because they’re in different trusts, the lab won’t take each other’s bloods and the computer systems don’t talk to each other to share results. So I have to do the tests twice. And, ultimately, it’s a lot to do with the fact that the difference trusts have different pots of money and why would one trust pay for another trust, even if it saves money overall? That would be the logical thing…

I know the phlebotomist, and she struggled getting blood from me again. We got there in the end. She did say that I’m a very good patient and put up with a lot of discomfort while having the tests because my veins are particularly tricky. I just assumed they hurt everyone as much and just got good at sitting still and gritting my teeth, but apparently not!

Wednesday

The ambulance service hasn’t emailed back to say if they’ve renewed my red flag on my address, which gives me a quick call out and an ambulance carrying hydrocortisone when I ring 999. Which is a little bit worrying but I have until the middle of November. I email and chase it anyway.

Thursday

Today I went to my occupational therapist at the hospital. I got sent to see her when my GP thought I might have chronic fatigue syndrome/ME, but there’s a fair amount of overlap between that and adrenal insufficiency so I kept going. She’s lovely, we’ve talked about pacing, sleep routines, setting achievable targets, how to build up exercise. Today was more of a touch base appointment but it’s particularly tricky for me right not because she says I’ve pretty much mastered how to set my pacing and manage my day to day living as much as I can, but there’s clearly something endocrine wise going on which keeps throwing a spanner in the works. Ideally, I’d be working on maintaining a baseline of activity every day but we decided that’s a bit impossible for me at the moment and I need to do what I can as and when I can. The difference between me and other patients she sees is that I’m highly motivated to help myself, so if I can do something, I’ll do it or work out how I can do it based on my limitations. Whereas a lot of people can’t think of alternative ways or don’t see the point in even trying.

She made a good point in that I need to appreciate the small steps I make even if it feels like negative progress at the moment. Like having my Apple Watch means I can pace myself even more effectively than before, because it ‘notices’ when I feel ill before I do sometimes. I haven’t quite been discharged from her clinic yet, she’s going to leave me on her list until after Christmas, but, realistically, she’s given me all the tools she can and the last couple of appointments have been mostly for me to reassure myself that I am doing everything I can and any negative steps aren’t my fault. Which I needed to hear.

I sent my husband over to the pharmacy to see if he could get my hydrocortisone I ordered earlier this week. Except someone somewhere ordered the emergency injection kit rather than the tablets. Which is frustrating because I even said on the phone ‘not the solution, the tablets’ and they’re called different things anyway. So I’ll have to ring my GP to ask for it again.

Friday

I got on the phone to my GP first thing and they said they’d put it through to the doctor right away and I should be able to collect it later. However, I went over at the time they told me to and it hadn’t arrived at the pharmacy yet.

The ambulance service eventually emailed me back to say that the letter I sent them from my GP wasn’t legible (it was) and they wouldn’t take it anyway because it needs to come from my GP rather than via me. Which is irritating because this letter literally just says that I have adrenal insufficiency and am steroid dependent. I spend half my life walking round with test results and scan photos to show doctors when the computer systems don’t talk to each other. Everyone’s fine for me to do that (even though I don’t want to), but not for me to be the middle man for a simple letter. This means I have to ring my GP again and explain it to the receptionist who also agrees that it’s stupid. But she managed to attach the initial letter to an email and send it that way. Fingers crossed it works this time but I’m not holding out much hope.

Saturday

My husband goes to the pharmacy to pick up the hydrocortisone. They have the right brand, which is great! But the doctor only prescribed one box, which isn’t overly helpful because it only gives me enough for a week rather than a month.

Basically I spend most of my life chasing prescriptions…!