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marculees · 3 years

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Epilepsy Awareness Month💜

I recently seen this post by @interstellix who made great points about epilepsy for Epilepsy Awareness Month. It sums it up really well so I suggest you give it a read and reblog! Its nice to find another photosensitive here too because we’re such a small group within the epilepsy community. I deal with anxiety on top of my epilepsy and while they aren’t always related to each other, I don’t hear enough about the day-to-day worries of epileptics. Things that seem completely normal or fine to some people can be dangerous for me, which is why stuff like giving trigger warnings are much appreciated. But often, non-epileptics don’t know about what its like to actually live with epilepsy - not just having seizures. I want to add on some of my own experiences with a funky clickbait title, below the cut. Anyone who reads this all is a star and ily⭐️

10 Things Non-Epileptics Don’t Get (Yet)

1. That moment in movies when the character wakes up and a bunch of faces are gawking down at the camera uncomfortably. Always have someone to stay with the person having a seizure. But out of care for both that person and the people around, its best to get everyone else away. No one enjoys watching someone have a seizure - it’s scary and knowing you can’t stop it can ignite feelings of guilt or panic. For the person having the seizure, its embarrassing - they aren’t even conscious of what’s happening and for all they can remember, they were minding their own business and now they’re waking up and barely able to move their body without wincing in pain.

*TW: BODY FLUIDS* I’ve literally puked, shit and pissed myself all at the same time unconsciously in front of a room of people. I’m lucky these people were my family but it doesn’t make it any less embarrassing or upsetting knowing that everyone there saw me in such a state. A fear I had growing up was having a seizure in front of my class and the students making comments about it, thinking it was funny. In today’s age, filming seizures is something to worry about too because of how easily it can be shared to others online. Even if you aren’t an arsehole like that, try to be as respectful as possible and get everyone else to evacuate the room. At most, have three people to stay there: one person to stay close and time the seizure, one person to move furniture away and find something soft to lay under the epileptic’s head, and one person for crowd control who is keeping everyone else out and reassuring them all it’s okay.

Whatever you do, don’t make the epileptic feel bad for having a seizure. They can’t control it. Afterwards, comfort them and let them know its all over and you’ll stay with them until they feel better (unless they say they would rather be alone). Most of the time, the epileptic will be so tired and sore after their seizure that they’ll fall asleep. Let them; they need it. I’ve woken up on a couch, in my bed, the back of an ambulance or in a hospital bed and sometimes I was laying there for half an hour, sometimes a whole day. Knowing someone was there is relieving. Knowing everyone was there is shaming and it doesn’t make you feel any better when they’re all in your face afterwards too. Don’t be the camera crew.

2. Travelling alone is either a dream or everyday reality for a lot of people, but its a no-go for some of us. I was raised in a very overprotective household and still today, I don’t have a lot of freedom. Driving is usually one of the first bits of independence you get, but not for me. I’ve had seizures while out travelling because of the SUN. The sunlight flickering through trees, railings or bouncing off surfaces have triggered seizures in me where my family have had to pull over. The thought of being the one driving in such a scenario is terrifying to me, my loved ones and everyone else on the road. Driving is such a normalised thing for people my age that I’m embarrassed to bring up my own case unless someone specifically asks.

Then you have public transport. The sunlight issue is also here but this time, you’re with a bunch of strangers (see Point 1 again). Something my mum drilled into my head since I was younger was that if I ever got public transport by myself, then I could have a seizure and someone would film it and another person would rob me (and then you wonder why I have an anxiety disorder). I got my first bus by myself when I was 19 and for something so mundane to most people, it was like a little adventure to me. My mum didn’t approve but she complained about having to drive me everywhere too. While its fun to get the bus into town every now and then though, it becomes a bigger issue when travelling is a daily requirement and you aren’t able/allowed to drive yourself.

Free public transport doesn’t always include those with epilepsy, depending on which country you live in. What do you do when an employer asks if you can drive? What do you do if you have committments to go to and no one is around to drive or come with you? Or you need to explain why you’re going out, every single time, because someone else has to decide whether its worth the risk. Sunny roadtrips? Want to be a pilot? That last one isn’t a joke, by the way! I used to get a coach/private bus to college and if it was sunny, I’d pull the curtain over, wear my sunglasses and try to nonchalantly cover one eye to help. You can’t really get a curtain while driving your own car though and driving one-handed is not cool, its irresponsible.

3. Staying up all night talking with someone you love isn’t as romantic as we’d like it to be. All-nighters, i.e. lack of sleep, are a huge trigger for many epileptics. I wasn’t allowed to go to sleepovers with friends as a kid until I was 13, and at that sleepover I ended up having a seizure in the middle of the night after waking up to use the bathroom. Not to flex, but I had a seizure on the toilet. Where’s the weirdest place anyone else has had a seizure?. As a result of that, I was put back on medication after being told I was growing out of my seizures and had been med-free for one whole year. I’d love to stay up with a loved one and spend the night talking or watching movies, but I think a seizure would be more of a killjoy than going to bed early.

3. Unless you’re the paparazzi, camera flashes won’t give photosensitive epileptics seizures. Its a small gesture and I do appreciate it, but don’t worry - one small flash from a camera will not send my brain into override. Just don’t be taking photos from 5 different phones at the same time for more than one pic. Standing and waiting for people to take a photo all at the same time is awkward already because you don’t know who to look at, what to do with your hands, if you should change pose, smile or not, etc. Just take one flash photo and be done, or don’t use the flash at all if you don’t need to. Ring lights are a common thing now, by the way and I love them? Bye-bye camera flash!

I don’t blame anyone for having these types of concerns though. The only time you’re probably warned about flashing lights is when you’re about to watch a news report or awards show where there will be paparazzi and performances will be aired. Concerts are another thing that can be risky depending on the genre, size of the venue, whether its indoors or outdoors (if you’re like me and enjoy EDM music, you’ll have a very low chance of actually attending or watching anything live fdkslbjfdhb). Those things we avoid. But you taking a photo with a once-off flash will be okay, don’t worry. Seizures aren’t triggered by a single flash, but rather multiple flashes in a short period of time. They’re called Hertz and that shit hertz when its between 3-30 flashes per second. Also, fuck strobes, the Incredibles 2, Into The Spiderverse and any other movie that uses these for unnecessary effect.

4. Not everyone is diagnosed with epilepsy in their childhood and though some might grow out of it as they get older, not everyone will. I thought I had been growing out of it on two occasions (see point 3 again and point 9). Some people only get diagnosed with epilepsy later into their life. If you’re diagnosed while young, its easier to adjust your life because you’re growing up with it as your norm and its something you’ve just learned to live with. But for some people, they suddenly have to change their entire routine that they’ve established since they became an adult. Be sympathetic to those with epilepsy in their adult years, especially those who only got a diagnosis. Its not just a disability for children.

5. There are different types of seizures and one that’s commonly misunderstood is the partial seizure. These types of seizures have been mistaken for people being drunk or high (i.e. slurred speech, difficulty standing up or walking in a straight line, etc.), which has led them to getting kicked out of venues for something they have no control over. Swimming pools seem to be a common place for these bans, as well as gyms. Sometimes, these people are still somewhat aware they are having a seizure but cannot control them, which is really scary to think about. I don’t have them myself but I cannot imagine how frustrating they must be to not be taken seriously and instead as someone being high or intoxicated and then being punished for that. Alcohol is usually avoided as it can trigger seizures but when these seizures happen at social events, people can get the wrong idea. If you know someone who has these types of seizures, keep an eye on them if you’re out together. We’re usually only allowed one pint and hardly anyone gets that drunk after just one, so be aware that its likely they aren’t actually hammered but having a seizure instead.

6. Nobody likes being overworked but school, college, jobs and sport can very hard on us. Unless you’ve had a seizure, your teacher or boss probably won’t extend a deadline for you. The latter might even fire you. Chronic fatigue isn’t taken seriously. School is one big memory test in most countries, but for those with aura seizures, their ‘spacing out’ can affect how information they are actually taking in. Side-effects of meds can also make concentration and memory tough, and I hate how forgetful I can be because then I feel like I’m unreliable even though I push myself to give 110% anyway. Some activities like sports and physical education can be more draining than they would be for the average person, and sometimes I’d have to sit out during these activities because I felt an aura coming on after overexerting myself. I wish I could sit out having multiple assignments and group projects due in the same week, but college doesn’t work that way. I wish I could tell employers that I might not have that presentation done by the end of the day, but that wouldn’t go down too good either.

If you know someone who takes longer to complete tasks that might seem simple to you, ask yourself if you’ve ever considered they might have epilepsy or another chronic illness or disability. Don’t assume they’re lazy if they need to take an extra day or two to complete their final essay or have to stop their beep test earlier than the rest of the class. I didn’t know a good average for the beep test was 8-9, because no one ever told me. I pushed myself to 16 because I was scared people would think I was lazy and that I was dropping out to be with the other girls who agreed beforehand. I then ended up having an aura that almost slipped into a full seizure. I also almost had a seizure an hour before my religion exam in my Junior Cert at school. My mum even insisted I stay home and miss my State exam because of it. I still went though, took a bathroom break because I had another aura, and finished with an ‘A’ but had it been a different day, I might not have been so lucky. Its about knowing yourself and your limits, but we aren’t always informed that they should exist and then you end up doing stupid things like me that could hurt you. Likewise, its important to be understanding that not everyone can work at the same pace as you. It doesn’t make the quality of our work any less even if we need more time or energy to do it.

7. Side-effects aren’t always in the short-term. My own meds are advised to not be taken long-term as they weaken my bones over time. I’m 21 now and I’ve been on meds since I was 8. I wanted to reduce my dosage and eventually become med-free last year but the neurologist told me I still had brain activity and needed to stick with them. In fact, they almost ended up prescribing me more even after I had told them I was five years seizure-free. Why? See point 9. I’m lucky though because I’ve only been on one type of med. Some people can take years to find what works and their neurologists will prescribe them all sorts and leave them with awful side effects. Only last year I was chatting with a woman whose meds had caused sudden depression and fits of anger in her after she had been diagnosed and given her prescriptions. She eventually got brain surgery instead.

8. If you have a uterus and/or want to have children, do your research and a LOT of it. Birth control is usually a tough decision to make and often times, it can feel like you have no choice. Its so important to check with multiple neurologists and doctors which form of birth control is the best for you with your medication, because even the slightest new introduction to your meds box can have unpleasant side-effects. With the current medication I’m on, I can’t take the pill unless I want to increase my current dosage of meds as the pairing cancel each other and make me more vulnerable to seizures and other side-effects. I’m not pregnant and yet I have to take daily folic acid supplements because my meds cancel that out too. Every month or two, I will faint or almost faint on the first day of my period and I’m more vulnerable to having a seizure during that time. If I ever want to give birth, my children can possibly inherit my condition or be stuck taking care of me when I should be caring for them. I wouldn’t wish that upon anyone.

This is not to say that people with epilepsy can’t have fulfilling sex lives or raise families. But we just do it at a greater risk that even some neurologists aren’t aware of. I had to tell my neurologist last year why I didn’t want to go on the pill because HE didn’t know it interacted negatively with my meds. I’ve known women who were prescribed the pill or meds BY A PROFESSIONAL that interacted negatively with each other and gave them seizures as a result. It takes ‘find the right method for you’ to a whole new level. If your partner has epilepsy, its so important to discuss birth control and take their condition into consideration. I hear men telling their girlfriends to go on the pill so that they don’t have to use a condom, which is really selfish for a start and also disregards other forms of birth control. Do your research but let them and their own trusted neurologist decide which form is best. You should still be using a condom to protect yourselves anyway! And if you and your epileptic partner decide you would like to have children, do the same process and make sure that they are in a safe position to do so.

9. *TW: DEATH* Threatening (even ‘jokingly’) to trigger a seizure in someone is playing with that person’s life. SUDEP (Sudden Unexpected Death in Epilepsy) affects roughly 1 in 1000 people each year. Even if that person doesn’t die after their seizure, you may have just broken a record they set for days, months or YEARS without a seizure. You just revoked their driving license and they weren’t even behind a wheel. You just prescribed them new doses of medication without any years of medical school.

Growing up, I had countless incidences where classmates would joke about making me have a seizure. If the teacher left the room for anything, the first thing they would do is run up to the lightswitch and fuck around with it. In secondary school, I stopped using the bathroom at lunch because one of the girls thought it was funny to deliberately flick the lights on and off anytime I was inside. She would snicker and call out to me while I was in the stall, asking if it could make me have a seizure. Even after saying yes, she continued to do it. If I did end up having a seizure in that bathroom, god knows what could have happened. I had a seizure in a bathroom before and was lucky I only hurt my jaw as my head slammed against the wall. Others aren’t so lucky. Injuries from seizures can be brutal, just like OP said. Yeah, you might not kill them by triggering a seizure, but what injuries do they have to deal with after?

Imagine playing a game for years and you spent ages collecting all the items, defeating every boss and proudly showing off the trophies you won. Now imagine someone suddenly pulls the cord as you’re playing; your game freezes, the screen shuts to black and when you try to frantically start it up again and see where you had remembered to last save, it says your data is corrupted and deletes everything without your permission. It doesn’t matter where or when you saved. You have to start your progress all over again. You can try memorise the strategies from before but the game switches things up and suddenly you’re hit with a difficulty spike out of nowhere. The person who joked around and pulled the plug doesn’t have to do anything. And if they wanted to, they could do the same thing again and again. Don’t be that person. Be their Player 2 and help them. If they need to go into a dungeon but they’re scared to be alone, offer to cover their back. If their health is low, find them a safe spot and let them heal. The same goes for appointments and seizures. Its not a multiplayer game by default and while they can power through solo, that doesn’t mean they don’t need help if they’re ever stuck.

10. To end on a more positive note, there are lots of successful people out who have/had epilepsy and you probably never even knew. Cameron Boyce’s passing brought attention to SUDEP and celebrities with epilepsy but did you also know about these people and their own cases and seizures?

Prince

Elton John

Lewis Carroll

Danny Glover

Lil Wayne

Neil Young

Hugo Weaving

Charles Dickens

Julius Caesar

Vincent Van Gogh

Theodore Roosevelt

Adam Horovitz

Susan Boyle

Rick Harrison (the Pawn Stars guy!)

And some who are not confirmed (due to medical practices of the time) but are suggested as a result of numerous seizures:

Leonardo da Vinci

Michelangelo

Edgar Allen Poe

Agatha Christie

Socrates

Napoleon Bonaparte

Aristotle

Alexander the Great

Epileptics are humans, normal people just like you. And like you, they’re capable of great things too. If you think about making a crude comment to someone with epilepsy, think about these people and ask yourself if you would say the same things to them.

If you read all of this, comment with a ⭐️ and please reblog to spread awareness. Whenever we talk about epilepsy, we start and stop the conversation at seizures. Its good to bring awareness to the other things too because its something that affects every part of our lives. Its an invisible disability but that doesn’t mean we are hidden from the disability community and discussion!

#actually epileptic #epilepsy awareness month #epilepticon2020 #just epilepsy things

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karmacrowd-blog · 6 years

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20 Things I’ve Learnt at 20

I’m about halfway through 20 as I write this and I’ve been spending a lot of time in recent weeks reflecting on what I’ve learnt this year and how I can continue to learn and blossom into a lovely young lass. So, in celebration of these thoughts, I began to compile a list.

However, in all honesty, the title is slightly deceiving. Some of the things on the list I am still trying to learn/accept. It’s all a process, I’m just glad that I’ve started it.

Speak intentionally and clearly. Especially in public and when speaking to people that would normally make you a lil nervous e.g. waitstaff, retail workers, bosses, customers, etc. Over time the practice of this has actually eased my social anxiety. Success!

Don’t be afraid to get messy with your food. I have a bit of a thing with germs and I generally despise the feeling of grit and grime on me anywhere so this was honestly hard for me to begin with. I can, however, say with confidence now that it’s actually kind of... liberating? Eat with your hands; get right in there and let it get all over your face and drip down your arms and then, when you’re done, wash with soap and warm water, finish with hand cream. Everything can be cleaned, especially you.

Don’t be afraid to ask for what you want. This has frankly taken me way too long to learn. I really started to make an effort with it after I let this woman give me a massage that was WAY too intense and I woke up the next day unable to move my neck with bruises covering my back. It’s safe to say I learnt the hard way. What I didn’t get was why I didn’t just speak up. I mean, it’s literally a masseuse’s job relax you, so tell them if it’s too rough!? If the shoes you’re trying on don’t fit properly, don’t buy them (this is something I’ve actually done). Instead, tell the shop assistant that you need another size, rinse and repeat until you find the shoe that fits. Apply to situations where necessary.

When looking for a seat on public transport. Self-explanatory really. This was my mantra when travelling to Sydney city in peak hour and now when travelling around London, at any point in the day.

It’s really okay not to drink. And smoke, and do whatever illicit substances are on the cards for your Saturday night. Contrary to popular high school PE belief, the chances of your friends actually peer pressuring you into smoking or doing drugs are pretty slim. In my experience, whenever I’ve been offered something, a simple ‘no thanks’ has sufficed. And if they do push it more, sorry babe, but they’re probably not very good friends.

Cheap sunnies make a better accessory than a safety tool. Need your mane out of your face? $2.30 sunnies from eBay will do the trick. Not so good for actual UV protection though. They’re cheap for a reason, keep that in mind.

No one needs to know how much you earn. An important life lesson for those chronic oversharers like myself out there. Everyone likes a mystery, make your cash sitch one too.

“Never complain; never explain” I read this somewhere about a year ago and I honestly considered getting it tattooed across my wrists because if this isn’t a life motto I don’t know what is. It’s quite a cut-throat motto, to be fair, and shouldn’t be directly applied to every situation. However, where applicable, I think it makes a lot of sense. A British Prime Minister first coined the phrase - Benjamin Disraeli to be more specific - and the basic idea behind it is that if you never complain you’ll never have to explain yourself. And then reversed, if you never explain, you’ll never need to complain. There are more in depth explanations on the phrase all over the World Wide Web if you want to know more, but that’s the basic gist.

Invest in things you will use heavily. This year I’ve become the owner of a few items that - unlike most of my purchases - I wasn’t ecstatic about buying. These things, however, have all been ‘investments’ and I’m glad to say that now, mere months later, I’m happy that I spent the few extra bucks to get myself some quality prods. Some of these things include a backpack, headphones, a journal, makeup brushes, and staple clothing items.

Honesty. It is, as they say, the best policy. And they, whoever they may be, are bloody right. Being honest and upfront about things has made my life soooo much easier in the long run. But you already know this already.

Write things down. You are absolutely going to forget that thing that you just told yourself you wouldn’t forget so just jot it down quickly right then and there. You can thank me later.

It’s alright to spend all day in bed. You don’t need to feel guilty about having an off day, just don’t make it a habit.

Buying your friends and family presents feels so much better than buying yourself something. I think general selflessness is the goal here but this is where it started for me. Yes, you’re giving up the rush of buying yourself some stupid hoodie that you definitely don’t need who needs 12 hoodies but the look on your gal pals face when you give them a gift that they know you spent your hard earnt Centrelink cashola on is #worthit. Worth it over the hoodie every. damn. time.

Not everyone in your life is going to agree with every decision that you make. And that’s ok.

Naps are good. Within moderation!! No word of a lie this has been one of the hardest things for me to overcome on this list and if you know me you will know the struggle of trying to get me to reply to your text around 1-2 in the arvo. I’m asleep and I’m sorry.

Sometimes your parents are right. As much as it pains my stubborn ass to say this but yes. You know it, I know it, our parents bloody know it and they’ll never let us forget it. But they have decades more of experience on us and listening to them generally won’t do you any harm. Which brings me to my next point...

Sometimes your parents are wrong. A discovery that has taken me all 20 years of my life to come to but sometimes your parents don’t know what’s best and sometimes what they say is wrong. Sorry for the call out mum and dad, but I gotta keep this real. Sometimes they won’t have the answer and sometimes they’ll say things that’ll make you ‘yikes!’ into the next realm. But they, like everyone else, aren’t perfect.

The 90/90 rule. When I was prepping for my move to England I tried to dispose of some of my many unnecessary possessions and this was the tactic that I adopted to make the process a little easier for myself. Joshua Fields Millburn and Ryan Nicodemus (the boys behind The Minimalists) formulated the rule; basically, if you haven’t used something for 90 days (at the point of your clean) and you can’t see yourself using it 90 days after there is a good chance you don’t need it.

Taking the high road is almost always the better option. For your conscience and for the sake of your future. Taking the high road is probably for the best. Being kind always pays off.

Vinyl’s and record players are overrated. Last but certainly not, a metaphor, if you will. Vinyls are really ‘in’ at the moment and every kid that’s just a little bit edgy has one perched somewhere in their bedroom. I myself have one, along with only about 4 records. My last lesson here is indirectly not to buy into what everyone else is doing because it’s boring and expensive and probably isn’t everything you’d hope it would be. More directly however, vinyls are expensive and honestly not that good. So unless one of your parents have been hoarding their records for the past 30+ years (not mine, what the hell mum?) don’t spend your money on this trend. Be yourself because, in the words of a former unnamed boyband, that’s what makes you beautiful.

So there you have it! 20 things that I’ve learnt/am learning at 20!

Take from it what you will, do with it what you please and have a good day.

#published

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lottievoyage-blog · 7 years

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Portland series.

Typical of a teenage girl leaving home for an extended period of time, I was stressed on the drive down to Heathrow, anxious about the voyage I was about to take. As soon as the twisty (and unnecessary) line structure to airside appeared as did my tears, streaming as I latched to my mum and my dad. As a chronic over-thinker, I realized that maybe the late nights working, which led to oversleeping, didn’t leave me with quite enough time to truly grasp what I was doing. Was this the best decision? Am I really doing this so I can get some cool photos for my Instagram and then harshly realize home is 4778 miles away? Now, retrospectively, I can answer yes to both those questions; this whole idea, conjured up in February 2017, implemented nearly 4 weeks ago, is probably the best decision I’ve made. And that’s coming from someone who’s fallen out of the honeymoon phase and crash landed, face first, just west of Portland, Oregon.

But, in reality, I need to tell you about the whole process of flying across the Atlantic and mainland USA - an 11-hour flight, 32-hour day and one really tired girl = a lot of research, food, and movies.

Firstly, if you’re doing an international flight that requires you to dawdle around an overly-crowded airport, such as London Heathrow T3, you should seriously invest in some ‘space’; an airport lounge. Not only do you get copious amounts of food and drink, you also get an experience. If friendly and approachable, you meet people who are willing to share a little snippet into their life and seriously help to distract you from your own chaos. I met a bunch of interesting people, all dragging me away from the reality that I’d fledged the nest big style.

Secondly, when reading all those articles on how to deal with jetlag, really digest the importance of shifting your meal times gradually towards the local time at your destination. Albeit, you can definitely survive if you don’t do this through doing this technique called snacking (one of my favorite past times). By eating closer to the destination meal times, it means you won’t wake up at some weird times and expect a fry up.

Alongside these points, I really really recommend a pair of Bose noise canceling headphones. My 11-hour flight was so much more bearable as I could sit and listen to all my Spotify playlists I downloaded (also Spotify Premium is a MUST). Delta Studio offers a good range of films which can definitely help to burn a couple of hours, but listening to the audio through a pair of Apple earphones can kinda ruin the thrill of Boss Baby.

Finally, and ending on a big one, don’t go into a situation like this negatively. I had to get the MAX (public transport) when I arrived at PDX. I was tired, disorientated and without much money but I did it! Personally, I don’t tend to analyze situations like this until it’s too late and I’m already in the process of doing it. In reality, the easier route would have been to spend $30 on a taxi, but instead, being the cash-strapped student I am, I paid $2.50 for an experience. I understand there some areas in the world I really wouldn’t suggest doing something similar to this, but if you really research and understand your surroundings, I really do recommend trying something that makes people question your sanity.

For those of you who want to travel, study abroad or just visit a far-away place, I hope you have the best time, document your experiences and reminisce in years to follow. Life truly is for the living and go at everything with an open-mind and a happy heart. Be safe, aware and alive but don’t sit within your comfort circle. My trip is definitely not an extreme, but for me, it was a big ask. I’m here, having a great time, meeting brilliant people and living in a culture which will help round me (probably both in character and in person).

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paumeranian · 5 years

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Insight Statements

ONE: Since medical clinics are busy on most days, patients feel as though consultations are fit around the provider and not them, meaning they have to take time off work or uni to book an appointment and potentially miss out on pay or important activities.

Data count: 17

Survey responses:

“Easy to schedule for a day but not always for a specific time.”

“My doctor [at uni] has a high demand for appointments and usually any free spots don’t align with my timetable.”

“I book appointments usually when I get the chance to.”

“Booking an appointment can be difficult.”

“Most medical centres are only open on normal business hours (8am - 5pm) and it’s particularly hard for me to go without taking a day off midweek.”

“Work and uni means I don’t have much time spare time between 8:30am - 5pm when I need to go to the doctor.”

Interview responses:

“[Booking an appointment] takes so long. I’m sick I just want to get this over and done with so I can rest.”

“I have to call them up and wait for quite a while to book. If it’s peak hour there’s weird elevator music.”

“You never know when the next appointment will be free, if someone cancels or if there’s a slot that’s open.”

“When I asked to be seen on the day, usually there aren’t any available so it’s a hassle.”

“My GP isn’t open during the weekend and I’d want be seen sooner rather than later.”

“I was stressing out because I had so much work to do [for uni and I have to take time off].”

“I was stressed because I had to take time off work but happy at the same time.”

“I was just annoyed that I had to deal with my foot, it was hassle.”

“I had to heal naturally which prolonged my healing time which was about 2 years and it stopped me from doing most things.”

“The time they book me for is always early morning, not close to when I’d want to be seen.”

“I go to a busy clinic so booking can be difficult.”

Secondary research:

“Often the biggest barriers to accessing health care are geographic and financial. The issues are not having time, transport, or money to put towards attending distant health services, missing work to seek medical advice for themselves or loved ones, are a reality in so many of our communities.”

Source: https://thespinoff.co.nz/society/03-04-2017/the-patient-really-is-always-right-how-to-vastly-improve-our-public-health-system/?fbclid=IwAR0q2AagaLKtQ_lb25YhRCt0B2h3YytW1z9K5ktmgqKsgGUWLdGOuVx2ZZg

TWO: Waiting times for walk-in public clinics can go up to an hour or two and in worst cases, up to 4 hours in the emergency department which adds to the stress patients are already feeling due to their illnesses.

Data count: 7

Survey responses:

“The wait is the longest.”

“Some clinics are free but the waiting times are too long.”

Interview responses:

“My mum is unwell, the wait is too long, we’ve been ringing the bell but no one in answering.”

“For accidents and going to A&E, I find the process much harder as I typically wait for an hour or so.”

Interview responses:

“At public hospitals, you wait with a lot of people and they’re all sick. I’m germophobic and since I’m already sick, I get concerned when people [around me] start coughing as I don’t want to catch anything more.”

“The longest I’d wait at a public clinic would be about 45 minutes. While waiting I feel hungry, sometimes worried about what they could find.”

THREE: Healthcare is a high-demand public service where providers (nurses, doctors) deal with multiple patients on a daily basis. As a result, patients think it’s unfair that an appointment at a cost of $40-$50 only lasts for about 10-15 minutes. They feel as though this isn’t enough time to fully voice out their symptoms and have all of their questions answered.

Data count: 11

Survey responses:

“AUT only allows 15 minutes for an appointment on average.”

“An appointment for me occasionally takes 10-15 minutes.”

“It can be even shorter, typically 15 minutes.”

“More like 10 minutes.”

“Sometimes it’s very quick.”

“15-20 minutes isn’t enough time as the doctor is constantly thinking about the next patient so they just want to get through my one.”

“I feel like sometimes appointments are rushed due to a lot of patients.”

Interview responses:

“Checkup was 10-15 minutes but would’ve been better if it was longer so I can have more time to explain.”

“There could be things that we forget to tell doctor and with the time limit for appointments, it’d be hard to follow up after the appointment is finished.”

“A normal dosage of antibiotics made me throw up so I remembered to tell the doctor to half the dosage otherwise I would’ve thrown up again and had to come back.”

“When I go home after an appointment, I still have questions I didn’t get to ask but it’s because I didn’t get to think of them.”

FOUR: A major factor that stops people from consulting a doctor is cost. Because of this, patients feel inclined to see the doctor with a list of things to get checked out to make the most of their time and money as they wouldn’t want to return for follow-up appointments.

Extra: There is a consensus amongst students that the cost for a check-up (about $40) is too expensive. Without financial support from parents, they feel as though they would struggle to fund their own healthcare.

Data count: 8

Survey responses:

“Generally my parents pay for my doctor check ups but since my health clinic is not very subsidised ($50 for a consultation) if it were up to me to pay I would definitely struggle with that.”

“It’s so expensive to go, usually try and created a list of things that I need checking up on before I finally go.”

“Going for injections/ screening for diseases is annoying! You pay $60 for pain and a needle in your arm which isn't amazing - and that's not even the injection itself, just the screening process.”

“Personally, lack of money hasn’t prevented me from going to the doctor but I if I didn’t have the available income I’d think otherwise. I’d probably do my own research, try home remedies etc.”

Interview responses:

“There’s all these other issues I could ask them about [while I’m already there.]”

“I feel obligated to go to the doctor with a list of things to get the most out of time and money. It’s sad that I have to do this.”

“I feel like I’m a burden saying ‘Oh by the way, there’s this other issue…’ I don’t want them to think I’m a hypochondriac. At the same time though, I don’t want to have to come back for another issue [appointment].”

“A lot of the times when I do need to go to the doctor it’s because a whole lot of stuff has built up cause I’ve put it all in the back burner.”

FIVE: There is a lack of knowledge on medical information and healthcare costs amongst majority of patients (mainly students) which hinders them from exploring cheaper options and informing decisions on their own health and wellbeing.

Data count: 16

Survey responses:

“It’s expensive especially for students. Although there are a lot of on campus help I think this needs to be made more obvious and also for youth who aren’t studying but living by themselves.”

Interview responses:

“If I knew I could get it cheaper through Studylink I would’ve applied. But it is Studylink so I know it would take ages to process it.”

“I think it needs to be made more explicit if you can get healthcare for cheaper. If I haven’t heard it, how can anyone else?”

“I don’t know why it’s hard to find useful information. It’s like they don’t want you to use it.”

“I don’t know much about the medical system.”

“Medicine and information about them should be available to everyone.”

“If you don’t have proper understanding of health, you might miss out on details when telling your doctor about your symptoms.”

“I wish it was easier to find medical information (cheaper healthcare options).”

“Not enough knowledge on healthcare makes it hard for me to compare what I’m receiving to what I could be receiving.”

“You get what you get or you don’t know what you should be getting if you have nothing to compare it to.”

“I haven’t consulted other clinics so I wouldn’t know if what I’m paying is too much or too little.”

“I wasn’t aware that there were other options for getting iron medicine like through IV or shots.”

“They know that we’re students, we don’t have money. They should give us some sort of concession [for healthcare].”

“If they made student discounts more obvious then I’ll definitely get it.”

“I keep forgetting that students can get things for cheaper since we’re broke as hell.”

“I don’t think about student prices [for healthcare] since for buying food and petrol there isn’t a discount.”

“It’s the student’s responsibility to find things out but we need to be informed first.”

TED Talk on US healthcare costs

Shocking differences between health costs depending on location

Opportunity: informing people how much stuff in healthcare costs i.e. treatment, prescription to allow them to “shop around”

Patients are no different to customers

SIX: Nurses in the emergency department feel burnt out after long shifts due to staffing issues and dealing with multiple patients in different morbidity levels at once. On days like this, getting compliments from colleagues and patients help boost their morale.

"It takes a lot of dedication and mind preparation before coming to work. You don’t know what to expect, and they always expect the best out of you. You can’t make mistakes, it’s someone’s life."

"Getting compliments makes us want to do our jobs better, continue to help save people’s lives."

"If it’s busy, you don’t have control over how many people come, you feel burnt out and even if you cry for help sometimes it’s not addressed."

“When I’m not coaching I feel burnt out, when it’s short-staffed I feel like I didn’t do enough but most of the time it’s fulfilling.”

“As an ED nurse you never know what to expect. Generally the big problem would be man power and staffing issues.”

“Little things like getting compliments/commendations from patients and colleagues, it boosts your morale and makes your career not just a career but also your passion.”

“It’s a fact that employees who are more appreciated tend to find it really difficult to leave their job. But people who are undervalued it’s easy for them to drop a job, no matter how many benefits you get - you’re gonna burn out at some point.”

“You can’t give your all to one patient cause you have to save some [energy] for the next one. That’s the difference with us, some nurses might answer differently but as an ED nurse it can be exhausting.”

“You need to deal with behaviour and social issues as well as safety. People would just think our job is easy - you give medication that’s it. It’s not just that. Most of the time our morale is at stake.”

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awesome-legendarystudentcho-blog · 6 years

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"Fredericksburg Virginia Cheap car insurance quotes zip 22408

Fredericksburg Virginia Cheap car insurance quotes zip 22408

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Fredericksburg Virginia Cheap car insurance quotes zip 22408

Best Car Insurance for a teen?????????

im getting my liscence this week && im only 17. i NEED to know, whats the CHEAPEST car insurance to get in los angeles, california??""

WHAT IS THE BEST AFFORDABLE LIFE INSURENCE?

Affordable Malpractice insurance for doctors if Obama care passes?

How would that sound?

How would this type of crash effect car insurance premium?

If your car was insured under third party and you crashed into a Ferrari and wrote it off, would the insurance company really have to pay the entire amount? More importantly would this effect your premium significantly even if you switched companies? Obviously it hasn't happened, just wondering thanks.""

What is the best health insurance for the self employed? (and cheapest)?

The Car insurance company gave me a low estimate on repairs?

Long story short. Not my fault. I can not take this up with my insurance company because I don't have one. We got his info. My car has 140K miles on it. It's worth about 2K. It wouldn't be worth it to fix it. I decided to get the estimate and put the cash to another car. I have not signed anything yet. Insurance Company Quoted $1013.76 Auto Body Shop $1162.04 Ford Dealership $1284.90 271.14 difference. I asked to split the difference between the auto body shop and the Ford dealership. The Insurance compnay ofcourse said no. What should I do? If I had gone to an auto body repair shop of my choice with 1013.76 in hand they would have called the insurance compnay and asked for them to kick down more money. So I think it's fair that I get more cash. Don't even get me started on the medical. My health insurance is getting billed. Not the insurance company.

Have any 19 year old male's managed to get their car insurance under 2 grand in the past year or so?

If so, what company were you with? On my mum's suzuki wagon the insurance quote from aviva have been ridiculously high, but I managed to get one for 2 grand with a 50% drop in price next year due to no claims, the cheapest i've managed so far. Anyone with experience know where to go or if it's possible to get it cheaper on a vauxhall corsa?""

Where can i find the cheapest car insurance for a new young driver?

I'm looking to insure a car most likely small, i've been trawling the web for hours now and just wondering if anyone could recomend a cheap insurer for a young (17) driver. Many thanks.""

Does making payments on a car make insurance cheaper?

my mother in law is about to buy us a car and we are going to b paying her back. so i can either put that we are owning the car or making payments on the car in the insurance questionnaire. but i was wondering what difference it made. does making payments on the car make your insurance cheaper or more expensive or cheaper? i googled it but couldnt find an anwer

Are harleys cheaper to insure compared to a 600cc sportbike?

i live in ontario and i am wondering because the average sportbike insurance is 4500 a year so i am wondering if a harley will be lower or higher

Health Insurance for Uninsurable?

I haven't been able to get health insurance in the past couple years due to constantly changing jobs, and not being able to stay on my feet as much as I would like to in my career. I have diabetes, which is causing more serious issues with my limbs and eyes that I can't wait to take care of. I am in my low 30's, single, and a resident of Illinois. I know the affordable health care is suppose to start accepting applications in October, and care beginning in 2014, but I just can't wait that long. I tried any other state and federally funded option, but they have suspended their applications due to the new programs coming out later this year. Would anyone have any other ideas, my family will help offset some of the costs, I just need to find some kind of a plan with pre existing conditions to include diabetes.""

How much does car insurance cost?

if you can't give me an exact amount or something that's fine, just give me some kind of ball park.""

""If healthy foods were more affordable, would health insurance be cheaper?""

It irritates me beyond words that people these days are almost forced to have a poor diet because junk food is more affordable. Then, the health risks associated with eating junk food cause more people in the hospital, more money being shucked at pharmaceutical companies for medicine to treat the diseases cause by poor diets, and health insurance and taxes we all have to pay for regardless of how healthy we try to be. I mean, if a packet of Ramen noodles is 50 cents and an apple is $1.50, the majority of the financially stressed nation is going to reach for the Ramen. I would love to eat mostly raw fruits and veggies all day long, but I simply can't afford that and it makes me feel like the government is forcing me to eat crappy foods in order to survive. Why are healthy foods so expensive? And wouldn't it factor out in the end to reduce the price of healthy foods knowing a lot of money would no longer have to be forked out for doctor's visits?""

""Whats a night's stay in a hospital cost, on average, without insurance?""

I need to know approximate, or just the price of a hospital anywhere.""

Auto insurance question - I hit a big pothole..?

Saturday night I hit a big pothole and a few miles later my tire was completely flat and actually had holes big enough to stick a few fingers through. I took it to a tire repair shop and the rim was bent as a result of the tire going flat. They've found a replacement rim, but it doesn't match the other 3 on the car.. I would like all matching rims, but a complete set with tires is about $800. Would something like this be covered by auto insurance? The cost of the mismatched replacement rim and 2 new tires is $350, my comprehensive deductible is $500, but I would pay the $500 if insurance covered 4 MATCHING rims.. So basically I'm wondering: 1) Is this something auto insurance would cover? 2) Would they just cover any replacement rim, even if it didn't match the other 3 or 3) Would they pay for a whole new set of rims? If anyone worked for an insurance company and might know the answer that would be great..""

Sent a fake transcript to a car insurance for good student discount?

So me like an idiot sent a transcript from my college to Geico car insurance and it was altered. I thought that in the next semester, i can be able to make it all up. the altered transcript had 2 C's 2 A's and 1 B. What can i do now? I am really afraid because I really don't know what to do anymore. I feel like committing suicide because of this. What should i do? My original gpa for the transcript was 2.50""

Need Health Insurance!?

My husbands company doesnt provide benefits. We have three kids and need health insurance. We have been looking but all the insurance you can find is like $10000, $5000, $3000 deductible, 20% co-insurance, pay nothing AFTER deductible for office visit and $500~$1000 premium.unbelievable!. We cant get states insurance because our income is little high (middle class). What can we do to get regular insurance for my family?""

Can my new health insurance go back and look at my old one?

i have had a new health insurance plan since Jan. 1st ,2008. Can they go back and look at my old health insurance company records other than my actual health issues if that makes sense?""

Cost of getting motorcycle insurance for 20 year old?

I am probably goin to get a sports bike. I have had my license since I was 18. I have no tickets and clean driving record. I currently pay $140 a month for insurance on my truck. I was looking into getting a bike older than 2003. How much will motorcycle insurance be for a sports bike?

How much of a difference will a Mercedes cost to insure and register than a BMW?

I have a 2001 BMMW 330i and I was planning to hand it down to my little sister (who just turned 17 and got her license) Although, she wants a 2000 or 2001 Mercedes C230 or C240. My parents can afford this for her... but I was wondering how much more her parts will cost and how much her insurance and registration will cost her. Please no one who tells us that we should get a cheaper car.. it's not going to happen. Thanks though.""

Is the insurance going to total my car?

Last week I got rear ended by a motorcyclist. I drive a '99 jetta and in EXCELLENT condition it's only worth about $2,600. My car was in decent condition so worth about $2,000. I got a few quotes on how much it'll cost to fix it and it was anywhere between $1,000 to $1,800. Are they going to total my car?!""

What is a good price for motorbike insurance for 125cc (im 18)?

how much is a good price for an 18 year old motorbike insurance for an 125cc. Also where is best to get it? cheers

How much does it cost to insure a 90's range rover?

vogue SE range rover, 3.9l, automatic, 17 years old, first car. aiming for a 90's range rover because they're cheaper than a decent vauxhall astra or comparable yobbo style car. i belive a range rover is insurance group 14. thanks!""

How much do you pay for car insurance?

I am taking a survey. I need to know how much you pay for car insurance, how old you are, and what gender you are. Thanks.""

If you get a ticket for expired meter does your insurance go?

I just got a ticket for expired meter will your insurance go up because I don't want my mother to know about it

Fredericksburg Virginia Cheap car insurance quotes zip 22408

https://www.linkedin.com/pulse/top-10-affordable-car-insurance-bailey-weiss/"

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roselovesanimation · 7 years

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The Autism Show - 30th June 2017 Manchester - My Notes from Talks - Part 1

Whilst at the Autism Show, I attended 6 talks from different people about different aspects of Autism from resources, to gender and education. I made many notes so here they are typed up.

10:20 - 10:40 - Jane Stround, CEO of Activise Software - An app for developing personalised timetables, social stories, patient journeys and independence.

1. The company has free to download software online but they are producing an app for the Autistic market. It can be personalised to the individuals using it. They have worked with Royal Manchester Children’s hospital to go through patient journeys and documented that in their app in a story like format, as it is important to establish journeys, starting at home and ending back at home to provide ease to patients. It was first a paper-based journey but people would often forget to bring it to the hospital with them, which gave them the idea to make it app based, as a phone is always something people have and would bring with them to the hospital. Things can change instantly, and it is easier to adjust things digitally rather than on paper. Each step of a person’s journey is imputed into the app, can be changed to fit any situation, and shows a routine that is easy to follow and understand. It can also be changed into any language. Editing is easy to do, people can imput their own photos and words and make it fit the personal needs of the children involved. This is useful for young people in the Autistic community as they are all different but all like having routines as change can be stressful. The app can also be used to make a personal profile of a child that can be shared with the doctor, showing things such as likes and dislikes and any medication the child takes. Visual Timetables are educational and help people in day-to-day life. Social Stories can help young people and teenagers as it is a discrete tool, the app could be any phone app, but they can use it to go through things they need to do that day, such as going to lessons and getting home safe via public transport, it is a good way to remind them. It can also help in Independent living situations, such as adults with dementia, it can show stages of how to make a coffee to help remind them of things they can do. Their website is Acognia.com, they have interactive educational games and quizzes on there and their email is [email protected]. The app will be available in 1-2 months time.

11:35 - 12:25 - Linda Hume, National Lead for PBS at The National Autistic Society - Positive Behaviour Support in the home.

2. Hume works as part of the Adult services at the National Autistic Society, who have 6 teams across the UK which cover education, health and social care, amongst the many other services the NAS provide. They are all about helping people and following through all the stages to provide that service to people who need it, as families can feel excluded from learning about special needs but they make sure they are involved in every stage of promoting positive behaviour support in the home. There are many ways to define Positive Behaviour Support, as people have different perspectives on it. It can be defined as; Values, Theory and Evidence based and a Process, all these are important stages. Behaviours, Quality of life, Social Roles, Participation and Involvement of families are all important within those. It is all about creating meaningful relationships between the person with Autism and their family and friends and support systems around them, there needs to be clear roles and support. To achieve this there needs to be an emphasis on lifestyle changes, functional analysis of the situation, multicomponent interventions, setting changes amongst others. Every Autistic person is different so the changes need to work for the individual and the outcome has to be of value. For example, it’s easy to be general about things but that won’t work for any situation, instead of thinking about sensory issues and attention seeking as aspects, their needs need to be met and upsetting situations need to be prevented and there are ways to do this, it takes time and appropriate actions and actions of empathy. Hume mentioned a case study she partook in, where in which a mum describes her 16 year old son with Autism through things he likes such as cuddles, music, people’s eyes and junk food, which made him seem quite sweet, but there were underlying issues which were then described. There are always cause for concern which create an impact on people’s lives, and if the NAS didn’t take action, what would happen. The boy was on medication, he would hit others and cause injuries to himself as side effects of his medication, he didn’t sleep well. He needed the support of 4 people every time he went to school, which he only attended for 2 hours a day (due to funding issues and safety concerns), which gives off messages of having an “entourage”, so he didn’t have friends. There were concerns about his home environment as well as the school environment, so assessments were put inplace, they did interviews and observed situations and found out the issues. There were poor values, poor support and this wasn’t good for the boy or his mum. This had an impact on him through his health, not being included at school and his future didn’t look too promising. So they looked at it from the boys perspective, things didn’t make sense to him from his stand point, as he was unclear on his roles, and there was a lack of effective communication systems. They then took action through pro active and reactive strategies, in terms of environmental, skill teaching and ways in which he will succeed. We all avoid things in life, as things can be upsetting and we find ways to cope with situations like that, but how do we teach this to someone who doesn’t understand their own emotions, nevertheless of people around them. It was important to teach him key skills and do nice activities within this, along with choice making. It is all about being safe, as that is the most important, such as reducing impacts of stress by changing environments and providing tools/distractions to help him cope with sensory overload and ease distress. External environments can’t be controlled but adjusting schedules to work, such as shopping at times you know will be quiet, is meaningful to the individual. The outcomes of this were that the mum was always involved in all aspects, such as the meetings, which meant she understood and knew and learnt more about her son through this process. The boy has become more independent through the support he received and by having schedules to follow, means routines are in place which provide positive opportunities and help establish and maintain relationships and through positive encouragement, it improved his health. Communication is the most important thing, as is getting involved. For this to have worked, it relied on everyone being understanding, present and useful and working together to get the outcome that provided the family with a better quality of life and hope for the future. Hume finished the talk with “Behaviour isn’t the only thing, don’t lose sight of the individual”.

12:35 - 13:25 - Dr Stephen Tyler, Senior Lecturer at Manchester Met University - Exploring Models of Education: What works for Autistic Children?

3. Steve Tyler teaches students at MMU about Autism in Education. He feels a connection to Autism as he feels he had an “autistic childhood” as he didn’t spend much time at school and displayed certain aspects of autism, so he can relate. Autism was thought of as a rare thing at first but it is becoming more and more known through events like this and research/websites online, such as the Autism Educational Trust. Within education, it can be hard for autistic people to be in mainstream schools as the curriculums don’t work for every single child in a school, such as assessments and limitations on approaches to studying etc. In a survey by the NA in 2011, 63% of children with ASD (autism spectrum disorder) are not in the schools their parents want them to be in. Autistic people are more susceptible to mental health issues such as anxiety, which can have an effect on how they view school and studying. “What we should be striving for, for autistic people is happiness”, we need to focus on positivity and acknowledge the things they are good at and their own special skills that can help them. This means that the education system needs to change to benefit all children, as it doesn’t work for everyone, it’s not always appropriate. For example, weighted jackets, they can be good for some autistic people and not at all for others, but it’s a resource that is useful for some. Teachers can find it difficult to teach children with special needs and there is a reliance on teaching assistants, which could be considered to be barriers between the teacher and the child and the child and others. Staff need specific training, which is available and valuable as it’s important knowledge to have, but they aren’t always provided the time to do this in their own time. Not all autistic people are the same, there are details, you need to know the child individually, just because you know one autistic person, doesn’t mean you know them all, a general idea helps but they’re all different. Teaching assistants have a very difficult job as lessons can be a surprise for them and they have to work around that and support the child with special needs. There needs to be more Autism friendly environments, it’s not hard to change things to work. Within children themselves, it’s important to recognise their strengths and show this to teachers and allow them time for developing their own skills. There needs to be direct teaching of social understand and communication skills and creation of social support systems, such as circles of friends and buddy systems which will provide understanding amongst others. There are challenges and strategies amongst all of this, it is important to recognise anxiety and stress and allow time for discussion to help young people understand their autism and teach them how to cope with panic. As well as providing opportunities within the classroom for “escape”, if things get too much they can leave and also opportunities to engage with special interests along with appropriate emotional regulators like soft toys to stroke. Tyler mentioned an analogy a student told him about his autism where in which “Autism can be a little thing inside of you or it can be a big thing that you’re inside of”. This is quite an interesting way of describing it; it makes sense, as having Autism does not mean you are feeling the same the whole time, there are triggers and other factors that can effect that. The education system and home environments can be changed for autistic people; this can be done in many ways. Such as, providing real breaks, balance of high/medium/low demand activities, collaborating with families – effective communication (including fathers), sharing expectations, recognising “masquerading” – disguising true feelings, recognising family stress, addressing sleep/diet problems, collaborating with other professionals, understanding there are different ways of expression. Tyler discussed the differences between mainstream schools and specialist schools and different people’s experiences within each as case studies as everyone’s experience is unique. Progress needs to be made, there’s not one issue, there are many things that need to change. “The key thing is to encourage mutual respect and success should be determined by the outcome rather than the process”.

#mastersproject #*#research #text post

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