Muddles-
Plenty of people with chronic illnesses or disabilities will
tell you that it’s like having another full time job. The amount of time we
spend thinking about our health, how we can improve it, how we can stop it getting
worse, and balancing our energy levels can be huge. Then there’s everything
else, doctors appointments, time set aside to do physio or hydrotherapy,
remembering to take our medications. And, of course, we’re reliant on
everything going smoothly.
It can be the really small things that tip the workload from
manageable into crushing. A bus doesn’t turn up on time, so you end up sat
outside in the cold, your muscles seizing up, bones aching. You skip a lecture
to go to get a blood test, but the queue is so long you miss the tutorial
afterwards as well. A letter goes to the wrong address, so you don’t know about
an appointment until you’ve missed it.
And one of the things that seems to go wrong the most is prescriptions. Most of the time, all is well. We go online, we click
the drugs we're running out of, a couple of days later we pick them up from the
pharmacy. Job done. We're in control.
And then something stupid happens. My request is refused, and no-one sends a text or email to tell me why, so I don't notice until I go to pick the package up and find it's not there. They take something off prescription, no-one tells me, I don't notice until I go to order it again and then find out that I need to book an appointment to get it put back on prescription, at which point I end up going without my medicines for days or weeks. I go and get a blood test done so that I can get my next month's supply, but the results don't go to the right place and I end up without the drugs I need to keep me healthy because of a clerical error.
Now, I can manage without most of the pills I take every morning for a few days without having any problems. Others can't, but I normally can. Still, whenever it happens, it sends me reeling in a state of shock. Sometimes it sends me into tears. But why? In my case, going without a medication for a few days isn't going to kill me, it probably isn't even going to hurt me.
But what is does do is take me out of a position of control.
Control is incredibly important to me. Control over my body, the right to make decisions about what goes into it. This is how I keep myself going. When there is so much I can do nothing about, the small things I can change become my method of coping. And when someone through carelessness, or an IT error takes those decisions away from me, it quickly becomes devastating.
Especially as I consider myself an expert patient. I know about every detail of my health. I know when I need blood tests, I know what symptoms to look out for. I know more about my health problems than anyone else, and so I am the best placed person to make many decisions. Prescriptions are the single thing most out of my control.
So what could make it better?
Um....
Communication!
If my doctor expects a blood test result they don't get, don't wait for me to call in a few days later asking why my prescription is unavailable, send a test asking if I'd had it done. If you're changing something to a different brand or removing it, let me know! So much of the onus is on us, the patients, to go and seek answers. And we're busy. We have lives outside our conditions, we don't have time to spend hours tracking down phone numbers or waiting for calls.
Berserker Bard here -
Indeed it is very frustrating to find a random change to medication, especially if you rely on it to survive. Speaking as a type 1 diabetic, I know frustration with changes to procedure that leaves physical bruises. My insulin needles were changed from a top brand to literally one of the cheapest and I could tell after a few injections that it wasn't right. I began to get bruises much more often, it was more painful and the needles were less dependable to work properly. I'd been on the same ones for years and they were comfortable for what they were but these were blunt in comparison. If you have to prod yourself in the skin four times a day to keep yourself alive, quality of needles is something that's not fun to experiment with.
It wasn't the doctor's fault, however, as a quick google search about the needles showed me a NHS guideline change in order to save money. Yes, it came down to NHS cuts which resulted in a poorer deal for type 1 diabetics. Ok, cuts are happening all over the place and I have semi-decent needles at the moment which I changed to after the others failed so miserably, so I can't moan about it really, but it does highlight a bigger problem with NHS cuts. It always negatively affects patients and that is one thing that should be unforgivable in a system that was created for the care and wellbeing of all people. See, the system itself is a cause for pride, having healthcare available for everyone in a system that doesn't favour the wealthy. It's fair. But we have to look after the system, and I don't think that's been happening recently. it's fraying at the edges and it's depressing to see. We don't want to go the same way as the US, we like our NHS in this country and we want to keep it, thank you very much, but it needs to work. No wonder private healthcare in the UK is on the rise...
Lady in the Hat-
Unfortunately, I get the feeling that the rise in private healthcare is exactly what out government wants, and the deliberate under-funding of the NHS can then act as confirmation bias to people who are already convinced that a public health service does not work.
Speaking as somebody with anxiety, having medication is a mixed blessing. The best thing about it is that for me, it works. No, my medication doesn't magically make me feel better, but along with frequent exercise, hobbies and my faith, it helps make my anxiety manageable. When I do not take my pills, I find that my mental health tends to go downhill, and that in turn begins to affect other areas in my life. Some people can manage without it - right now, I cannot, and I am not ashamed to admit it. (Quite right too- Muddles)
However, getting the medication is a different story. Despite putting in requests for repeat prescriptions, they do not always get through, and I don't find this out until I actually make it to the pharmacy. It is humiliating going all the way into town to get something, spending ages waiting in line, and then being told that the pharmacy never received the request in the first place. Last time I ordered, this happened to me twice, and I ended up having to go all the way to my surgery out in the country just to pick up a prescription. The experience is often so miserable that I tend to procrastinate even requesting a repeat in the first place, which of course makes me dig myself into an even deeper pit of misery.
I intend to change surgeries just so that it is closer to me in the future, and I am hoping that will help. But the chronic under-funding of our NHS and the cruel indifference of our government means that thousands of people like us are suffering as a result. People's lives shouldn't be the bargaining chips of callous politicians.
Control is incredibly important to me. Control over my body, the right to make decisions about what goes into it. This is how I keep myself going. When there is so much I can do nothing about, the small things I can change become my method of coping. And when someone through carelessness, or an IT error takes those decisions away from me, it quickly becomes devastating.
Especially as I consider myself an expert patient. I know about every detail of my health. I know when I need blood tests, I know what symptoms to look out for. I know more about my health problems than anyone else, and so I am the best placed person to make many decisions. Prescriptions are the single thing most out of my control.
So what could make it better?
Um....
Communication!
If my doctor expects a blood test result they don't get, don't wait for me to call in a few days later asking why my prescription is unavailable, send a test asking if I'd had it done. If you're changing something to a different brand or removing it, let me know! So much of the onus is on us, the patients, to go and seek answers. And we're busy. We have lives outside our conditions, we don't have time to spend hours tracking down phone numbers or waiting for calls.
Berserker Bard here -
Indeed it is very frustrating to find a random change to medication, especially if you rely on it to survive. Speaking as a type 1 diabetic, I know frustration with changes to procedure that leaves physical bruises. My insulin needles were changed from a top brand to literally one of the cheapest and I could tell after a few injections that it wasn't right. I began to get bruises much more often, it was more painful and the needles were less dependable to work properly. I'd been on the same ones for years and they were comfortable for what they were but these were blunt in comparison. If you have to prod yourself in the skin four times a day to keep yourself alive, quality of needles is something that's not fun to experiment with.
It wasn't the doctor's fault, however, as a quick google search about the needles showed me a NHS guideline change in order to save money. Yes, it came down to NHS cuts which resulted in a poorer deal for type 1 diabetics. Ok, cuts are happening all over the place and I have semi-decent needles at the moment which I changed to after the others failed so miserably, so I can't moan about it really, but it does highlight a bigger problem with NHS cuts. It always negatively affects patients and that is one thing that should be unforgivable in a system that was created for the care and wellbeing of all people. See, the system itself is a cause for pride, having healthcare available for everyone in a system that doesn't favour the wealthy. It's fair. But we have to look after the system, and I don't think that's been happening recently. it's fraying at the edges and it's depressing to see. We don't want to go the same way as the US, we like our NHS in this country and we want to keep it, thank you very much, but it needs to work. No wonder private healthcare in the UK is on the rise...
Lady in the Hat-
Unfortunately, I get the feeling that the rise in private healthcare is exactly what out government wants, and the deliberate under-funding of the NHS can then act as confirmation bias to people who are already convinced that a public health service does not work.
Speaking as somebody with anxiety, having medication is a mixed blessing. The best thing about it is that for me, it works. No, my medication doesn't magically make me feel better, but along with frequent exercise, hobbies and my faith, it helps make my anxiety manageable. When I do not take my pills, I find that my mental health tends to go downhill, and that in turn begins to affect other areas in my life. Some people can manage without it - right now, I cannot, and I am not ashamed to admit it. (Quite right too- Muddles)
However, getting the medication is a different story. Despite putting in requests for repeat prescriptions, they do not always get through, and I don't find this out until I actually make it to the pharmacy. It is humiliating going all the way into town to get something, spending ages waiting in line, and then being told that the pharmacy never received the request in the first place. Last time I ordered, this happened to me twice, and I ended up having to go all the way to my surgery out in the country just to pick up a prescription. The experience is often so miserable that I tend to procrastinate even requesting a repeat in the first place, which of course makes me dig myself into an even deeper pit of misery.
I intend to change surgeries just so that it is closer to me in the future, and I am hoping that will help. But the chronic under-funding of our NHS and the cruel indifference of our government means that thousands of people like us are suffering as a result. People's lives shouldn't be the bargaining chips of callous politicians.
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