The posts where I write about my patient experience seem to get the most traffic and responses. And I use the NHS an awful lot, so I have a lot more insight into the way it works and serves patients than the average. So I decided to trial writing a week by week account of how my week using the NHS goes (if I’ve used it). Maybe it’ll help other people or medics appreciate and understand what living with a chronic illness is like.
My GP surgery last week rang me and said that my GP wanted to talk to me about my recent test results so could I please make a telephone appointment. Yep, no problem. I know that the only reason they contact you is to tell you you’ve got something wrong with you which you didn’t before. Which would probably make the average person a bit anxious but I already knew that the scan was going to show up the fact that I’ve got osteoporosis in some bones at least, so I assumed this is what my GP wanted to talk to me about and to to start the treatment she’d been discussing last time I saw her. Even so, I still got a bit anxious about it.
She was supposed to ring me between 11am and 1pm. I was not having a good week so went back to bed pretty much as soon as I’d had my breakfast at 7.30. But I set my alarm for 10.30 so I’d be at least functioning a little bit should she ring at 11. It got to 1.30 and still no call. So I could have had a longer nap! I rang the surgery and the receptionist said ‘oh no it’s booked for 3.45’ and made out like it was my fault I’d got the time wrong. I asked her why it had got changed and then she admitted that they’d had some problems with the locum and all the telephone appointments had been put into the emergency afternoon appointments slots instead.
My normal GP did ring me a little after 3.45 as promised but started the call with ‘i understand you want to speak to me about your test results’. To which I replied ‘no, actually, the surgery rang me and said you wanted to speak to me’. There was a silence at the end of the phone and she said ‘what test results are we on about?’. I was pretty annoyed by this point because I’d wasted a whole day hanging around and not napping waiting for a phonecall that I hadn’t even asked for and she hadn’t even bothered to work out what test it could be before picking up the phone. She only ordered one!
She eventually found my bone scan results and said ‘oh it’s a long report. I’m not sure what to suggest’ and then tried to read it while talking to me, which didn’t really work. Long story short- she said she didn’t know what to do with me a lot during this phonecall because she’s never seen anyone my age with this problem before and could I take it to my endo. She also didn’t tell me whether or not I had osteoporosis because she couldn’t work it out, so I was still non the wiser. I said it’s not really his job because it’s not Endocrine but I could if she faxed him it because he’s in a different trust and you can only see test results in the same trust they were done in. No, she said, I have to pick up the report and take it to him the next time I see him. Which gives him no time to prepare at all and he’s already annoyed with her because he feels she just passes everything to do with me over to him (which she does). I decided to order my repeat prescriptions while she was on the phone.
In the evening I had to get ready for my blood test the next day. I found my blood form and tried to work out if it was fasting or not but helpfully it didn’t say. Doctors do this a lot, they just leave those boxes blank and tend to hand you these forms as you’re leaving the clinic so you don’t always get the chance to check. I looked at the test boxes that were ticked and he wanted to test my cholesterol again, which is usually fasting, so I decided to fast just in case. The test also involved taking a large dose of my steroid at 11pm and seeing how I responded overnight so I double checked I knew what I was doing from this clinic letter.
I had to get up and leave the house by 7.20 so that I could go do my blood tests (huge challenge for me). Normally, I do my blood tests at the pharmacy over the road so I usually go in my PJs. But because I live in one trust and the endo is in another, you can’t do blood tests except for in the trust where the results are going/their lab is. Which meant a half an hour drive to the hospital (nearest phlebotomist in that trust) and then a half an hour drive back. Except I can’t drive and I can’t safely do taxis in case I flake out and someone needs to inject me (poor Uber driver would get a big tip I reckon). Especially if I’ve not had my morning meds or eaten. Which means my husband had to take me there and back. I have a lot of tests so a lot of the time he drives to work, comes back and gets me later, takes me to the test and then drives back to work. Most have to be done at specific times (most endocrine tests are like that) which means it’s never a case of when it’s convenient for him, which he obviously gets stressed about. Thankfully his boss gives him flexibility when we need it otherwise I don’t know what we’d do. The other irritating thing for him is that he works pretty much next to the hospital I need to be at…
I like this hospital because it’s quiet and there are automated iPad things to check in so I don’t have to worry about standing up in queues for long periods. Plus they’re super efficient here and they actually talk to you rather than just jabbing you with a needle and having a chat with their colleagues. I’ve never had a rude person for anything at this hospital yet. Test done which means I can go home! But before I leave, I take all my meds and eat something. It actually took longer to walk in the hospital to get there than it did to actually do the test. Hospitals are huge places which weren’t really designed with making it easy for sick or disabled people to get around, ironically. Even more of a challenge when you haven’t eaten or had your pills.
I asked a friend to take me to get my bone density report from my GP. I was expecting some kind of summary on the front but my GP had literally given me all of the photos and scales. So I still didn’t have a clue whether or not I had osteoporosis! After a bit of googling and comparing against my last scan results from 2 years ago, I worked out that while I’m still definitely osteopenia ranges, the osteoporosis ones haven’t increased that much just yet, which I’m taking to be good news even if I shouldn’t have anything wrong bone wise aged 31. I spend a lot of time googling and reading about things because no one really tells me the information I need to know but everyone expects me to explain it to the next doctor and be the go between. And lots of doctors have got things very wrong in the past so I like to know what’s going on anyway.
I made a complaint with a different hospital about their treatment of me in a&e a couple of months ago. What usually happens is you get assigned a coordinator who investigates and tells you a date they’ll respond by. Then they send you a letter or email with the conclusions and anything they’ll take forward from it. Except no one has responded and it’s a month past their deadline. I hate using the phone so I email them again to chase them.
I ask my husband to get my prescriptions from the pharmacy for me. Normally when I go I check all the packets to make sure they haven’t given me specific brands of hydrocortisone I can’t take but my husband forgot to do this and I ended up with Alyssa. Once you leave the pharmacy, you can’t swap medications, even if you take it straight back, but while you’re there, you can ask them to change it. Alyssa is cheaper for the nhs but you can’t break it into 2.5mg doses (from 10mg) because the compound isn’t mixed evenly throughout the tablet. So I can take the multiples of 5mg and 10mg of Alyssa no problem but not my 2.5mg doses. Which is why I usually ask for other brands where I can. The annoying thing is that 5mg and 2.5mg tablets exist on private prescription but the nhs can’t afford to fund them because pharmaceutical companies outprice them. A box of hydrocortisone costs about £80 as it is. I’ll have to ask the GP to reissue it- they hadn’t prescribed enough anyway so I still need to ring them to sort it.
A lot of people don’t realise but most of what I deal with day to day is admin surrounding my chronic illness. It can be a full time job in itself sometimes! The other thing to remember is that while it might not seem like massive tasks to do, I have to do it all while feeling ill. Because that’s the whole reason I have to do it in the first place! After my test on Tuesday, I had a bad Wednesday, Thursday and Friday health wise. That’s also why I pace out some of the tasks- I could have done most of them in an hour when I was healthy, but it takes me a while to sort now that I’m not. And I also ask my husband to do a lot of it for me.