My week with the NHS: 21st January

Mostly patient admin this week. Not v exciting but time consuming!

Monday

My GP practice rings me and says that my prescription has been done and they’ll send it to the pharmacy. They don’t usually do this, and it’s not like they’re asking me to pick it up, so not entirely sure why this prescription got a special phone call!

Wednesday

My endo said he was referring me to a cardiologist at the same hospital. I hadn’t had an appointment through yet, but had all my other referrals come through over a week ago. So I rang the hospital to chase it. The woman dealing with it was a bit impatient and rude about why I was ringing up to see where it had got to. Referrals in the NHS are stupid and depend on which trust you’re in and who’s doing the referral. The options that can happen near me for referrals are:

1) choose and book. Usually from the GP, where the central system gives you a reference number and login and you can go online and choose where and when your appointment is.

2) GP referral gets sent to the hospital, somebody in the hospital agrees that it needs doing and sends it either to:

– the department who books it for you

– the outpatient coordinator who books it for you

3) a HCP in a hospital refers you for an appointment, and it either:

– gets sent back to your GP for them to refer you on via options 1 or 2

– gets sent to the outpatient coordinator who books it

– gets sent to the department who books it

It’s a lot more complicated than it needs to be. And it gets more stupid:

– sometimes appointments are ‘triaged’ by someone non-clinical and they don’t see how their department might be needed in someone’s care. So the referral gets rejected

– no one necessarily tells you that the appointment has been rejected, so if you don’t follow it up, you just get no appointment

– whoever ends up booking the appointment copies in the original referring doctor’s secretary who might say that the appointment needs to happen within a certain amount of weeks/after a certain test has taken place. So the whole process starts again and the original appointment gets cancelled

– humans are involved, so people have days off, sick leave, holidays etc so some referrals just sit in people’s inboxes for ages

– sometimes people leave their posts and their workload isn’t passed on. So the referral goes missing

– doctors have time off which wasn’t built into their clinic hours so appointments have to move to accommodate those needing sooner appointments or because your clinic was cancelled

– there are so many wasted appointments on the NHS that every clinic is overbooked to not waste time, and sometimes they overrun and have to move people around and cancel future ones

– the system doesn’t necessarily generate an appointment letter until a month before your appointment. So you think you’re waiting for your time to come in the waiting list, unless one of the above things happen.

– the computer system is stupid as a whole and referrals go missing all the time before you even take into account all of the things above.

– the clock starts from the point that the person accepts the referral. So 6-8 weeks recommended time might be 3 months or more just because of the referral process alone. Then you’ve got to factor in that there almost definitely won’t be an appointment when your consultant requested it for, it’s usually a month longer at least. Unless you get force booked into clinic and then you end up making someone else’s appointment get moved…

Knowing all of these things, I spend a lot of my time trying to work out where in the system the referral is so that I can chase it up if need be. It got so ridiculous in one hospital that I used the time between 2 appointments to walk between secretaries to try and work out what on earth was going on. On today’s occasion, it turned out the cardio department had only just received the referral the day before (where had it been for 3 weeks then? Pick from the options above!) so someone needed to action it there before sending a letter out.

Friday

Quick trip to the pharmacy to collect my injection fluid replacements the GP had rung me about on Monday. Then I had to swap out the expired ones for the new ones in my injection kits.

My week with the NHS: 14th January

I don’t cope well on my baseline of hydrocortisone. I feel horrendous. What usually happens, is I get down to my daily dose, get ill with something or my body can’t cope any more and has diahorrea and I end up in hospital with double doses for a while before starting the whole process of tapering to baseline again. That’s what happened this week.

Wednesday

I knew I was going to end up in hospital sooner or later. I was feeling really sick all the time and was only really able to force myself to eat salt and vinegar Pringles and Coke Zero, I had diahorrea, I wasn’t sleeping, I felt really depressed and anxious… so it was on the cards. Wednesday evening my pain level and stomach issues reached a point where I couldn’t hack it any longer so I rang 999.

This is where the NHS doesn’t really work for patients like me. I wasn’t as sick as I have been in the past. What I really needed was urgent advice/4 hours of obs/treatment, rather than emergency care. If I ring 111, they always send an ambulance to me regardless of what I ring them with because I’m too complex and they’re worried about being sued. If I go to the walk-in/out of hours when I’m like this, they send me to a&e. If I go to my GP during the day, they can at least admit me to GP assessment unit at the hospital where I can get my 4 hours of obs, blood tests and IV meds. Although it depends on the docs you get and how confident they are dealing with endocrine things because sometimes you still get bounced back to a&e. But this type of care isn’t available when the GP surgery and assessment unit are closed. A lot of patients who go to a&e with non-emergent problems could potentially get seen by an advanced nurse practitioner (ANP) and discharged quite quickly, but I’m too complex for an ANP.

It might not seem like that big a problem because I still get the care I need. But it has a lot to do with the way I’m perceived by medics and the way I feel about the treatment I receive, as well as time and money being spent on me. The ambulance turned up on blue lights, which it always does unless I’m 100% sure I’m not going to pass out before it arrives and tell the dispatch not to use my red flag. Once they were there, I could tell them that I wasn’t in crisis/risk of death, but I needed IV, better pain relief and IV anti sickness. Which they can give me, but it’s a tricky situation for them because I’m not in crisis, so it means they pass the decision back to me as to what I want to happen because they’re not sure- if I’m in crisis, it’s obvious what they need to do. If I’m not, it’s a judgement call none of us can make until I get to the hospital and have some blood work. Or you give me the drugs and see if I improve. If I do, it’s just one of those things. If I don’t, there’s probably something more sinister going on. But there’s no way of checking out if hospital.

I said I wanted IV steroids regardless and they had a student with them who needed practice at IV Hydrocortisone so her mentor talked her through it. So she probably actually learned more than if I had been in crisis because the treatment was the same, just happened a lot slower so she could learn. She was moaning about how stressful and fiddly it was to prepare, until I told her that I have the same kit and have to try to do it myself when I’m also fighting to keep conscious. Then she was just horrified.

As soon as I had the IV, I started to feel better. But *because* I’d had the IV, I had to go to hospital for obs. At A&E, I got put through ambulance triage, had some blood taken and then waited for the hour it takes for them to come back on a stretcher in the corridor. I didn’t need to be in a&e, it was a waiting game for the lab. But I needed watching.

I knew by then that it was just a case of my body not coping on my baseline and needing a top up rather than an infection. As soon as I’d had my IV, I wasn’t even really an urgent case, let alone an emergency, and I didn’t feel like I wanted much more treatment, except some oramorph for the pain. So the perception of staff treating me who don’t know how my illness works is that I don’t really know how to manage my illness and I should be elsewhere. But the way the system works means I didn’t have any other option. And some staff aren’t good at disguising their frustration from their patients, so I spend a lot of time feeling guilty for stuff that isn’t my fault.

What would be useful, and does happen elsewhere, is when I have episodes like this, if I could go directly to MAU (assessment ward) or the endocrine ward. I could bypass a&e, saving time and patient space there, get my treatment and go home. Both have docs on call all night and nursing staff. If I needed to be admitted for longer, they could do that there. Other chronic illness patients must be in the same boat as me- they need hospital care out of hours but they don’t need a&e. But there isn’t another option.

The other thing to consider is that patients with long term illnesses tend to know their illness better than most people who treat them. Which adds to the frustration. A very friendly junior doctor spent a long time explaining the sick day rules to me because he thought I didn’t know them/didn’t know what to do and had gone to a&e unnecessarily. I know the sick day rules inside out, but he wasn’t around for all of the decisions I’d made during the day which got me to that point. And it’s not his fault the system doesn’t really work in this case. So I let him explain it to me, because he was friendly. But other times I’ve been given the same advice in a really hostile way because people think I’m wasting their time.

All my bloods came back fine so I was discharged. 3 days later I got a cold, which wouldn’t have shown up on any bloods at that point but clearly means my body was trying to fight something that hadn’t even materialised yet. Isn’t hindsight great?!

Choices

I don’t get to choose much in my life. Everything is ruled by some kind of illness in some way or another. So the few choices I do have, I quite enjoy making.

Think about the choices you get to make on a daily basis:

What to eat for breakfast? Yeah it might depend on what you have in the cupboard. But you still chose that. I can only eat half a slice of low carb toast with cream cheese because everything else makes me tachycardic before I even start my day.

Or what time you got up? You might have kids or have a job which dictates it on some days, but those were also choices you got to make. Ie having children or what job you have. Even if it didn’t feel like it was a choice, it was. You don’t have to be around for your kids and you don’t have to go to work. You choose to. I don’t choose what time to get up because my illnesses mean my tablets have to be taken at set times. So my alarm is set for 6.45am, 365 days a year.

Did you choose to have a shower today? I can’t shower every day. And I can only shower at specific times depending on pills and when I need to eat, and a whole other variables I can’t be bothered to explain right now.

Do you choose when to make your meals? Whether you want to go out? If you run errands? I don’t get these choices because I need someone to help me with the tasks, so I’m always relying on someone else.

That’s only the small stuff. I get even less choice with the bigger stuff, either for financial or physical reasons.

Imagine every single aspect of your life being dictated to you with very little choice. And it’s down to something that you have no control over whatsoever, which you didn’t choose remotely in the first place.

Ironically, I can’t cope with open ended choices anyway. If you say to me ‘what do you want to eat?’ I feel really overwhelmed and can’t focus on coming up with something logical. But I can cope with ‘do you want to eat x or y?’. I’m limited a lot with what I can eat anyway, so it’s not a big choice if the options are ‘salad’ or ‘chicken’. But it’s *my* choice, so it’s important to me.

I don’t like it when my few choices are taken away from me. Or people assume what they think I would like or like to to do. Even if it’s obvious what choice I will make, I still like to feel like I’ve made the decision for myself.

Does that seem a bit sad to you or a waste of time? Possibly. But when you’ve had everything else taken away from you, sometimes simple choices, like being able to choose what mug you have your tea in, feels like something really empowering.

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.

My week with the NHS: 7th January

I’m feeling a bit burnt out by all the tests and regimes and things I need to do to keep on top of my chronic illnesses at the moment. So I didn’t really want to write a post about it this week. But since I started doing this to bring awareness to the challenges people face with the NHS when they have a chronic illness, I figured it’s kind of important to write to anyway!

Monday

I had to do a blood test for my GP at my local pharmacy with the phlebotomist based there. I can’t even remember what this test was for, just that was the same and similar to the ones I’d done last week for my endo. But I had to do it twice because computers in different trusts don’t talk to each other and it all comes down to budgets and money, basically. We have the same rigmarole every time- the phlebotomist says my veins are awful and I point out the one she usually manages to get it from and tell her what colour needle to use. Either she has the memory of a gold fish or her patient care isn’t great, because I’m there so often you’d think she’d remember!

Also, quick side note in access, I went to the appointment on my scooter because I was having a bad day. But the pharmacy doesn’t have any kind of automatic door or push pads, so an old lady had to help me in and then one of the assistants had to help me out. You’d think a healthcare centre would make it slightly easier!

Wednesday

Endo day. I don’t typically get worked up about appointments, now that I know the doctors actually recognise my medical conditions (they used to tell me it was all psychological until it nearly killed me). But I always feel like the stakes are quite high when I see my endo. I know that rationally, things aren’t going to miraculously change in that appointment, but I still want to feel like some kind of progress is being made, even if it’s just ‘we don’t know yet but we haven’t given up on you’.

I’d been force booked into a chronic fatigue clinic rather than an endo one, because my consultant was fully booked for months and he wanted me seen by someone sooner rather than later. I was seeing his partner instead, also an endo. In the endo clinic, you can ask to see the senior consultant specifically when the healthcare does your obs, but you might have to wait a bit longer, which is fine by me. Otherwise you get seen by a registrar. I’d love to be able to be seen by a reg, because that means I’d be a simple case. But as my doctors are all scratching their heads, a reg with limited endo experience isn’t going to fathom it if their bosses can’t.

The healthcare was a bit funny about it when I asked, because, and I’m just guessing here, while chronic fatigue is definitely debilitating, it isn’t life threatening like having an endocrine condition like mine or diabetes can be. So I reckon they see it as less important to prioritise certain cases. I tried to explain that I’m a complex case but she said ‘everyone always says that though’. This is the same healthcare who does the endo clinic and it wasn’t until I mentioned how I’d been force booked into this clinic that she changed her mind and added me to the senior consultant’s list.

I’ve had this doctor before and know I like him too. He’s a bit scary and forthright but I don’t mind that if he’s a decent doctor. He said we have to wait for gastro input and he wants me to see a cardiologist because of my fast heart rate. So it’s a waiting game which is super frustrating as a patient it’s likely to take until autumn just to potentially rule out gastro problems, let alone if I do actually have one. I liked the fact that he said he wanted to check with my usual doctor to see if it was worthwhile doing some renin testing because of the wider impact it could have on me in the next few months- I don’t mind doctors who admit they don’t know everything rather than just making it up. I particularly like this endo team over the other 2 hospitals I’ve had experience with because they actually care about the tiny parts which massively impact on my overall quality of life. The other hospitals kind of had a ‘well you’re not dying right now so go away and get on with it’. Which, if you applied that to other aspects of healthcare, could be said for about 99% of illnesses. The problem with having a life threatening illness, I’ve found, is that people seem to care less about how it affects you every day and are blinkered by the fact that they’ve successfully kept you alive so far, even if your quality of life is poor. I don’t know why, but that always seems to be the case!

I left armed with some more blood test forms and a referral form for cardiology. So more patient admin to be getting on with!

My week with the NHS: 30th December

I tapered 5mg on my steroids last week, which means I can’t really remember when I did things last week! It’s because it makes my brain foggy and difficult to recall some things, like what day of the week it is. Plus I think most people felt like that in this week because of the bank holidays!

I had to order my repeat prescriptions again, but got my husband to ring up and do it since I didn’t want to talk on the phone. Mostly because I couldn’t concentrate.

NHS England sent me a survey about the care I get at my GP practice. I was randomly selected so it wasn’t specifically about me. I found it difficult to fill in because a lot of it was about how easy it was to get an appointment and how helpful I found my GP to be when I had that appointment. I tend to avoid my GP if I can because they haven’t proved very useful in the past and have got lots wrong. But then I decided that actually, I can’t be the only person with a chronic condition who feels like this, even if the survey was aimed at people with more routine reasons to see their GP.

The referral came through for the gastro appointment my GP did before Christmas. It was a choose and book letter and unhelpfully says ‘you have been sent this letter because your GP has referred you for an appointment’. What appointment? What department? I know it’s a standardised letter but if there are parameters to put my personal info there, there could be a field which says what type of appointment I’ve been referred for. It’s not a lot, but when your brain hurts and you see a lot of doctors, it’s little things like that which mean you don’t feel like you’re having to work out everything all by yourself which go a long way. I’d been referred for tests as well, but I know from experience that they don’t come through choose and book. But only because I’ve had to work this kind of thing out before!

For those unfamiliar with the choose and book system, you’re given the letter, a login code and your password. You can do it on the phone too, but online is very quick and easy. You’re told the approximate wait time at a few different hospitals near you, click your preferred location and then you get to choose your date and time from the ones available. The approximate wait time doesn’t show up recently cancelled appointments though, whereas the appointment times screen does. So sometimes it’s worth clicking on your chosen hospital to see what’s available since you can always change it again by going back. It’s much better than being sent an appointment allocated to you in the post and not getting a choice. Because a lot of the time, when you ring up to change it, you get put down to the bottom of the waiting list again because you opted to change it, even if it’s something completely out of your control eg you’re on holiday. So choose and book gives you the flexibility you don’t get otherwise.

My dilemma was did I want to have my consultation in the same hospital as my endo so they could share my records/it has the potential to be multi-disciplinary, or have it in the same hospital where I was admitted as an emergency and ended up having a week’s worth of tests. I asked the opinion of a couple of people and decided on the second one, since adding another doctor to the mix might mean they’d want to repeat the tests again. And some of those weren’t particularly nice, so the fewer the better!

I managed to get an appointment for March (recent cancellation), which isn’t too bad a wait for a routine appointment. The choose and book system is definitely a lot better now than it used to be. But it is an NHS computer system and they don’t tend to like me so I’ll feel better when I get the confirmation letter…

Nostalgia. And a Bit of Brexit.

Two weird coincidences happened yesterday. A random stranger I follow on twitter started tweeting about the music department I used to be head of. Turns out her husband now has my old job there so I spent a bit of time stalking my old colleagues on twitter and reminiscing. Secondly, I went to the pub over the road for dinner with my husband and one of my ex pupils walked in, despite the fact I haven’t seen any pupils for years!

I found myself feeling nostalgic about how much I enjoyed teaching, how I loved working with the kids and how well I got on with my colleagues. It made me miss the good old days, and I felt a bit sad knowing that that part of my life (having a career, being so active, being a musician…) is definitely over.

Something else which keeps coming up on my twitter feed is the whole ‘we’ll be *Great* Britain once again once we leave the EU’. After my trip down memory lane and seeing more of these Brexit posts yesterday, it got me thinking.

It’s good to reminisce, but I was only really remembering the good things. I had to think hard about the things I disliked about teaching; always firing on all systems, marking, difficult classes, red tape… Not to mention how ill I felt all the time, and stupid things like how I was juggling a&e trips and being back in time to teach my year 11s.

I can be nostalgic about my teaching career and wish that things were back to that way, but even if I went back to the same school and had the same job now, it wouldn’t be the same. Because nostalgia adds a whole different layer to your memories. It makes them something it never was, because that’s how you choose to remember it. The kids would be different now. The government have definitely introduced more red tape. Marking policies might be stricter. And if I hadn’t been ill, maybe I wouldn’t have enjoyed teaching so much, because I’d have taken the fact that I had a job for granted and just got into a working routine.

It was thinking about Brexit which got me to that conclusion. Lots of people seem to think that leaving the EU means we’ll go back to being the country we were before we joined it. But we won’t. The NHS won’t suddenly be fixed, even if a whole load of money was thrown at it. It has big faults and faces problems which didn’t exist when the NHS was born. We won’t have our empire again, and would we really want it? The monarchy doesn’t have as much influence as it did and won’t again, because politics in the rest of the world has moved on. Any kind of notion that the country would revert back to the ‘success’ it was before the EU is nostalgia, or wishful thinking from those not alive at that point. It neglects all of the issues we did have back then.

Even if I could replicate what I thought my teaching life was like, it still wouldn’t feel the same. Expectation doesn’t normally live up to reality. So for once, I’m grateful to Brexit for reminding me that reminiscing might be fun, but in reliving the good old days, you’re not really moving forward in life. It’s not what I had planned out, but sometimes you find just as good, different or better in things you end up doing by accident.

My week with the NHS: 24th December

Chronic illnesses don’t take time off for Christmas, unfortunately, so I still had a normal-ish week with the NHS.

Thursday

I ran out of blood sugar testing strips so I had to order those from my GP. I’m not diabetic, but I do have reactive hypoglycaemia, which means when I eat certain foods, I have a drop in blood sugar rather than an increase. Basically, my body over reacts with the amount of insulin it needs and makes too much, so it makes me have low blood sugar (hypo). Because I eat exactly the same things at exactly the same times every day, I don’t tend to test throughout the day unless I feel weird. But when I’m eating out of my normal routine or new foods, I test to make sure I don’t accidentally have hypos. I ran out because for some reason I was also having high blood sugar over Christmas, so I was testing a lot to try to and work out what was going on and what I needed to eat.

Friday

I’m seeing my endo in January, so I needed to do some blood tests for him. I can usually get them done at the pharmacy over the road, but he’s at a different hospital in another trust, so I had to go to a hospital 30 minutes away to do them. It’s a good day to do them, despite being a Friday, because no one wants to do hospital and medical stuff when they’ve taken holiday. So it was dead quiet and I was straight in and out. It’s a little bit irritating to have to drive for an hour for the sake of 30 seconds, but it’s to do with the fact that one trust won’t pay for another trust’s lab processing and budgeting rather than patient care. And the fact that the computer systems don’t talk to each other if they’re in different trusts so they wouldn’t share the results anyway…

I didn’t need to go to out of hours or a&e in Christmas week, not even close! I’m quite proud of myself. My dad and my husband did though. To be honest, even if I had hit my ‘hospital feeling’, I probably wouldn’t have gone unless I absolutely had to (ie death could be imminent) because even though the NHS is a 7 day a week, 24 hour service, it’s very difficult to access quality healthcare in a timely way at certain times. From experience, the staff most likely would have been junior or inexperienced and while they might be medically competent in most illnesses (probably not mine), their organisation and management of cases probably wouldn’t have been adequate for the volume of people presenting at a&e. Being a doctor is just as much about juggling lots of things at once as it is the actual medicine, and that’s not something you can learn until you’re actually in the situation. And a lot of it relies on the staff being brave enough to admit when they aren’t sure or to go and ask a more senior colleague. Which, again from experience, they don’t necessarily want to do, especially if it means waking up a consultant at night by ringing them. And who can blame them really!