What a Week With My Disability Costs in the UK | EDS & POTS
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- Опубліковано 7 бер 2020
- What a Week With My Disability Costs in the UK | EDS & POTS
I wanted to make a video to both show how incredible the NHS (national health service) is in the UK, as well as highlighting some lesser-known and talked about grey areas that people are currently struggling. So, I thought I'd show a week in my life with my disability and how much it costs me in my country, England. Hope you find it interesting, what's the health system like in your country? Let me know below,
Georgina
FAQ
I have Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome and myalgic encephalomyelitis.
I'm a full time university student
I'm also a wheelchair and catheter user
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I made this video to show how great our health system is & I’m very grateful for it ☺️ But, I also wanted to highlight some of the grey areas (although I actually forgot to include a lot of them, so the actual cost is much higher!).
I totally agree our health system is great but there are many areas they could improve on. They are definitely way underfunded also our government seriously needs to help it out. I'm stuck indoors due to health generated generalized anxiety disorder and I've been waiting over a year for counselling will be waiting longer now too due to covid 19 but totally understand that. The staff do amazing things but are so under paid and valued but we are lucky to have the service we have. Can't agree more with this statement u made Hun 😘🦓
So many important points here! I agree with you too and I'm sorry the system is letting you down :(
@@GeorginasJourney Accept the islam And Get the Jannat after Death 💕💕
ua-cam.com/video/ZL1G7LZQSig/v-deo.html
@@BirdsLover3820what is the jannat? 😊
Meanwhile in the US my copay to see a specialist is $40 out of pocket and I have fairly good insurance. Many of my medications are $100+ for a months worth. I know every system has it problems but it seems like the UKs works a lot better especially for people with chronic illness.
Taylor Christiansen Our health system is amazing for people with common & well known illnesses, but not all chronic illnesses. A lot of people with Gastroparesis, for example, have been left to starve, with BMI’s dropping below 14. & while specialists may be free, it can take up to 2 years to get an appointment, which has been too late for some people, so the grey areas are bigger & more problematic than many people realise
same here! i’m terrified for what’s gonna happen when i move out for college and have to get my own insurance and fund everything myself. being tube fed and in a wheelchair ain’t cheap!!
healthcare in US is horrendously expensive
Sounds reasonably similar to Australia. In Australia I’m in this annoying spot where I’m too sick for the normal systems, but not sick enough (don’t yet have a confirmed diagnosis from a specialist either) for extra funding, so going to specialist appointments and things add up reasonably quickly.
That's really tough, I'm sorry to hear that- hope you can get some answers soon! Being undiagnosed was the hardest part by far for me, but it did slowly get better from there so keep hanging in there! :)
I’m so glad you mentioned the pre-payment certificate, i had no idea it existed until my pharmacist mentioned it, i paid for it and then realised i qualify for a medical exemption certificate. i’m on around 10 medications and also use catheters so it was definitely helpful to look into
Chloe I was paying for about 10 medications for a year & a half before I realised too- it got so expensive! & even better that you’re medically exempt! :)
This was such a great video thank you for sharing all these little costs that people don’t think about, we are so lucky to have the NHS honestly I don’t know how our fellow warriors in America cope xx
Beverley Butterfly thank you! Me either xx
Thanks to my thyroid condition I'm medically exempt from prescriptions which is a relief. When I lived in Wales they were free for everyone but I'm in England now. I just had to fork out £30 for my ring splints (just oval 8 ones which are very medical looking and not very comfortable), I'd love the metal ones because I'd look more normal but they're too expensive given that I'm on UC. At least I can use my hands a bit more again. My physio recommended the ring splints but they're not available through the NHS. The amount of money I spend on taxis is absolutely ridiculous but it's the only way I can get to my hospital appointments.
H Alderman I’ve had a tab open for oval 8 ring splints for ages on my phone but just haven’t bought them yet with the other costs I’ve had to pay for- and I’m in the same boat that I have to get taxis to appointments (although thankfully, my dad takes me to my more specialist hospital appointments which is a 2 hour round trip 😬😅). I agree that the metal ones look better but I’d never be able to justify the cost 😅
Georgina's Journey I’m lucky my specialist stuff is in the same city, round trip still costs me about £20 each week but at least it doesn’t take me long to get there, two hours sounds awful 😭 I got my ring splints from amazon because on the oval 8 website they were even more expensive. Next up is something to help my thumb/wrist so that I can write by hand properly again.
Hi Georgina, great video! It’s very enlightening to see how the medical systems are in different countries. I truly don’t think anyone as a majority will say collaboratively say that any health system is perfect. With that being said here it seems if you can afford it and have great insurance you can get in right away where if you you can’t afford insurance you need to go to a clinic and it will take a lot of time to see a specialist and get the extra medication. Hope you are well and staying safe! xoxo❤️
I agree, there are pros and cons to all of them.
That seems to be what a lot of people are saying! Thanks for sharing :)
Thank you, you too xoxo
Wow I didn't know how cheap your prescriptions are. I pay $20 (USD) a month for my antidepressant and $125 every 3 months for ivabradine. I have other prescriptions that I get a couple times a year to take on an as needed basis. Thankfully, I'm on a copay waiver program with my insurance company that allows me to get all my diabetes supplies for free (insulin, test strips, pump supplies, dexcom supplies). Also, wait times are similar for some specialties in the US. I waited 9 months for the earliest appointment to see a new endocrinologist. However, I do like that I have the freedom to choose my own doctors and schedule my own appointments instead of waiting for a letter. As an American, my perception of the NHS is that it works well for people with acute illnesses or common chronic illnesses (like diabetes), but not for those of us with more complex needs.
Oliver Carnazzo yep, ours is always £9 & usually for around a 3 week supply (but anywhere from 12 days -4 weeks is pretty standard too). And you’re absolutely spot on about the NHS in terms of how our referrals work (a letter with a random date and hospital just gets posted to you), as well with what/who it’s best for!
This was really interesting, thank you! I live in the US and it can be really expensive to live with chronic illness. Even with insurance, one of my drugs is $325 for a one month supply. I think you're right to focus on the good aspects of the healthcare system where you live...no one system is perfect for everyone, so helps to look at the bright side.
Dermatillomaniac As I said in the video, I’m very grateful for our health system & I do always try to look on the bright side (& actually if you look through the comments on my other videos you’ll see I’ve received hundreds of comments saying how positive they’ve found my videos), but one of my drugs is £20 per tablet so £1,200 for a month’s prescription as you have to get it on a private prescription. & I had to raise £7,000 for my wheelchair to go to uni. So yes I’m very appreciative of our health system, but I have personally struggled with it in the past I’ve fell into those grey areas. I was diagnosed with the worst stage of malnutrition on our health system’s criteria & left for two years in that state for an appointment- I was very ill, but I know many other people who literally starved through that time & very nearly died, with BMIs lower than 14. So on the whole the NHS is amazing, but the grey areas are costing people their independence, quality of life & their actual life in some cases
Oh wow! I just found your channel as I am hoping to make content like this and I have always wondered what it is like cost-wise in other countries. Like, what it is like to be chronically ill outside the states, you know? Anyway, thanks so much for sharing! Fed my curiosity. I'm going to have to watch some more of your videos here soon! I've liked, subscribed, and rang that bell! 😉
MaLadyLife thanks! And good luck with your channel! Let me know when you start posting and I’ll watch your videos & subscribe :)
@@GeorginasJourney -Thanks so much and I sure will! Should be posting within the month but you know how it can sometimes go with chronic illness. Keep your fingers crossed for me!
I hope this message finds you on a good day! About to watch one of your other videos now. ☺️
MaLadyLife that’s so exciting, Rachael! Keep me updated! :)
Very informative! I am in US, and we are completely different. The question I have though is how much of your taxes go toward the NHS? In US, there is a constant debate on whether it is actually cheaper for a healthcare system like UK or to stay with our system.
Elizabeth Wheeler it’s hard to tell exactly. Most people pay 12% of their income towards national insurance but that covers a variety of things including the NHS but also disability benefits. In addition most people pay 20% of their income towards taxes some of which goes towards the NHS. Those with very low incomes don’t pay any of that and those with very high incomes pay more.
19sox92 thanks for helping me out with this one! :)
@@19sox92 thanks! That is really good to know. Our insurance is much more complicated than that, but it seems like in reality it's not crazy different with pricing at least for me. I would say about 10-20% of my family's income goes towards health insurance depending on the year.
In the UK the first £12,500 you earn isn't taxed. People on a low income don't pay income tax.
That's a really interesting video:)
Thanks Eva :)
@@GeorginasJourney You're welcome :)
Get video really helps others x
Thanks Annie! x
Thank you for being honest about your healthcare system. To many people who have a similar health system, and have no understanding of how the healthcare systems works here in the states, tend to criticize our healthcare and act as if their healthcare is all free with no serious problems. Nothing is free, someone somewhere is paying for it in the form of higher taxation. Here in the states, no one, regardless of citizenship or financial abilities, can be denied treatment in an emergency situation, it’s against the law. Is there room for improvement in our system, absolutely! I can relate in a way to you in regards to healthcare. I’m an Army veteran, and I get treated at the veteran’s hospital. I have type-2 diabetes, fibromyalgia, and end stage arthritis in my lower back. My medicine is at a lower cost, while some other things I don’t pay for, the American citizens graciously take care of us veterans, which I am eternally grateful for. Peace to you in your struggles with your health, I can’t imagine what you go through. 🇺🇸🇬🇧👍✌️
Redsorgum Hi! Everything you said is so true and it sounds like you have a very good understanding of how different types of healthcare systems work- you’re completely right that nothing is ever free and it’s just who pays for what that differs between systems. And thank you for explaining and clarifying a bit of how it works over there, I’m always interested to learn more about that :) Hope you’re doing okay today and your pain is as well managed as it can be
I live in the US and my emergency surgery and hospital stay cost me $8,000. They charged something ridiculous like $30K to insurance.
Fiona M did you have to pay the whole £8,000 or was there a way out of it?! 😮
My family had to pay it all but it was our max out of pocket for the year so now anything we do is free for the rest of the year. So no more copays for the rest of the year and if I need another surgery or any testing I won’t pay anything. Still have to pay for prescriptions though. But I am lucky that my doctors appointments are fairly long so there’s that at least. I’m very lucky that my family is able to afford my medical expenses. (Oh and it’s the whole family out of pocket so my parents won’t have to pay copays or anything for the rest of the year too.)
Fiona M ah, I see! Izzy was explaining to me that hers works in a similar way! I didn’t realise it affected copays for your whole family- that at least makes the expense slightly better if it’s split between you all & so you now all benefit from not having to pay for anymore copays. Thanks for expoing that to me- we’re aware that things are very different in the US here, but most of us have no idea how it works over there beyond the fact that most people need and have some sort of insurance!
Georgina's Journey yeah I don’t fully understand it myself 🤦🏻♀️ it’s very complicated and there are lots of different plans!
11:09 This looks like a picture taken from a video I watched earlier.
13:48 I've heard another UA-camr deliberately avoid mentioning the Coronavirus because he's seen videos he made be demonetized as soon as he mentioned it. I have yet to find out why this happens on UA-cam.
Bert Visscher I’m assuming you mean the thumbnail photo from my wheelchair & e-fix video? Then yes it is. I haven’t had any problems with monetisation, but will keep an eye on it, thanks!
That is so nice of you to send the mask to her! Very kind x
E M aw thank you for saying so! She needs it more than I do! x
I have a chronic illness/disability, and I'm on a limited income because I'm currently unable to work. I don't fit into a traditional view of disability so I'm only entitled to means tested benefits and not PIP. Because of this, I get free NHS prescriptions, but I also need a lot of non prescription healthcare supplies which I have to pay for which can be difficult. I also have to buy any mobility aids or joint supports I need.
This is the case for a huge number of disabled people & it sucks :(
I’m in a very similar boat, btw, my UA-cam channel doesn’t earn a lot
Hi Hun I got my braces from NHS orthotic department they aren't great they are mainly foamy and make you sweat so much. I'm struggling with wheelchair issues myself was given a charity via wheelchair center I went too not that they make it an easy application process. It's so difficult I had a very bad day on assessment day I had to wear all my braces and both my smart crutches and I was still told cos I could stand and walk short distance with my gear above I didn't hit criteria so agree it's so hard to be heard. I'm in Yorkshire so sound like London is same. As for masks I found a research study that stated Vogmasks don't ward off bacteria and viruses and the best masks are the Cambridge mask because they are triple layered and approved by UK ministry of defence and FDA and used by military but can now be used for commercial use ( according to webpage ) but again they are out of stock cos of Corona virus but you can pre order. My total cost so far has been around around £6000 if not more as had to buy an adjustable bed as have to sleep elevated thanks to GERD and LPR not to mention all other GI issues. Other things I've bought are BP machine, oximeter, blood sugar monitor cos I can't eat most days and I have a higher risk for diabetes with it being in family, peak flow that attaches to my phone, smart crutches plus other things too I also take paracetamol four times a day on top of prescription meds so a two box limit lasts 8 days that's with the 32 box from behind pharmacy desk also alot cheaper than panadol which may help you I pay £1.30 for 64 tablets eg two boxes from Tesco pharmacy. Thanks for your video though Hun I found you by watching Izzy. I'm new to vlogging as I am 37 only got DX at 34-5 with eds and I also have kids with health issues too so kinda vlogging on my issues plus how we cope as a family and from a parental perspective. Glad I found you and Izzy xx
Mylifewithchronicillnesses Hi! I’ve just subscribed! And that must be so tough being diagnosed that late! And I’m sorry you’ve had troubles with wheelchairs too- mine was £7000 for the wheelchair & device so I dread to think what my total would be in terms of how much I’ve spent on health stuff! I usually buy the own brand paracetamol but it was sold out everywhere that time! Hope you’re doing okay, I look forward to catching up on your videos!
@@GeorginasJourney thanks sweetie I haven't even got a wheelchair yet unfortunately. I am awaiting a social worker/OCC health person to come and help move my shower to a better position but also help fill out the forms for charitable funding as they have to be filled out by a third party and gp cannot do it. I'm basically stuck in my home all day alone with kids at school and my brother at work I only go out if I have to alone like an appointment if my brother can't take me. My local hospital is ten min walk away but takes me an hour to walk there if not longer and with UK weather as u know that can be challenging. Thanks for following me I have a be kind video I'm currently working on and also a video awaiting to be approved by nephrotic trust as my son has nephrotic syndrome and it's a kidney issue hoping to post it Thursday for world kidney day. 😊
Mylifewithchronicillnesses I was in the same position for 3 years before I got my wheelchair- but even the cheapest one you can get online can give you a better quality of life, my first one cost about £100 and I was only able to go out once every 6 months or so when my friends came home from uni and could push me, but it was still a big step forward. Good luck with the video, I’ll look out for it :)
Can you share your skin care routine 😊 your face glowing so much
Sanu Safalya thank you! Unfortunately that is not a video my viewers would find interesting, but I appreciate you telling me!
@@GeorginasJourney you reply every comment ... this is very nice of you ❤
NHS wheelchair services are rubbish when it comes to wheelchairs that actually improve independence. Other than a basic NHS manual/attendant wheelchairs I have funded them all myself. 👏🏻👏🏻
Sarah this has been the case for so many people! Thank you for putting it into words better than I did in the video, but I’m really sorry you’ve had to do that! Hope you have what you need now 💕
Yep I have self funded everything I need to
ilovebrean sorry you’ve had to do that! I know how tough that can be at times
Georgina's Journey sure is I need to find a smart drive or smoov next as after weeks of messing about with invacare they have no said yet again the efix is not compatible with my xenon 2 😡
ilovebrean that’s not invacare’s fault if it isn’t compatible. My wheelchair wasn’t either, so I had to sell mine & apply to more charities to fund the excess in order for me to get the e-fix and a compatible chair. As I said before, my video that’s coming out on power assist options soon may be helpful to you
thanks for sharing! i live in the US i’m highly jealous i just paid 600$ for my meds
Sorry to hear that, that is a huge amount of money! will it at least last a while?
God 10 minute appointments are so short. All my appointments are usually 30 minutes-2 hours. Health care here sucks usually but the appointments are much longer.
woah, that's great that they can be so thorough! It's always so rushed here
I have hEDS and POTS and cath too plus combordities and in the states it's so hard to get a mobility scooter,I've been trying,my doctor writes detailed stuff and physical therapist says since I can walk in house I'll be denied but I literally can't walk without falling backwards, POTS symptoms,weakness etc,I just go to daily appointments then home and nothing else it's boring and not fun 😑
Jessica's Journey that’s so frustrating and unfair, I’m so sorry :/ I hope you can figure something out 💕
Yes, my boyfriend is diabetic so if we moved to the UK all his medication would be free, which he finds ridiculous. Not paying for insulin would be one thing but he would have no problem paying for his prescriptions for totally unrelated illnesses. We live in Switzerland and here it's really confusing - some things you pay for then the health insurance gives you part of the money back, some things aren't covered at all and for others you pay nothing and the bill is sent directly to the health insurance. I had a hysteroscopy in January and my health insurance paid for the actual procedure but I had to pay for being anaesthetised because that part was considered optional. I also got sent a bill for a hospital stay when I miscarried at 16 weeks. I got some of that money back but I would have preferred not to have to see the bill in the first place. The NHS is far from perfect but I strongly believe medical treatment should be free at the source for everyone.
Confuzzled Bev gosh that does sound very complicated & confusing as well being very expensive of course :/ It’s such a shame that where you live determines the health care you can access. & I can’t even imagine how awful that must have been to get sent a bill after a miscarriage, I’m so sorry you went through that
Sorry for your loss i have had 4 miscarriages so no how awful of experience it is. Omg how is being put to sleep a option!!
@@mrsr5689 I've had a hysteroscopy without general anaesthetic as well and it was ridiculously painful - they had to cut open some scar tissue (most likely from the miscarriage) while I was awake! Then I was supposed to have another one but the doctor couldn't even get the camera in and when I called to rearrange it a different doctor was scheduled and said she would do it under anaesthetic. I really don't understand why it has to be an option though. If you're rummaging around in people's uteruses (uteri? ) you should definitely let them be asleep!
I am so sorry for your losses too.
@@GeorginasJourney Health care in Switzerland is amazing to be fair but the insurance system confuses me so much. There are all these different options that cost different amounts. All countries should just give people medical treatment without making them jump through hoops!
Do you have a hand therapy department (comes under OT) or orthotics? They should give braces. I got wrist braces and finger splints from hand therapy and they also sent me to orthotic for compression sleeves. Orthotics normally do braces for knees too.
chloe archer not that I know of, I’ve never been referred to one
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Hiya lovely, I was wondering what charities did you go through to help fund your chair? X
Gemma Short Hi! Mind Body EDS- for people with EDS & the Snowdon Trust for students! Hope this helps!
I need to get an implant like that. Have you tried a regional block instead of a local anesthetic. My massages are free but I have atypical insurance.
Sophie Amarant the first year and a half was great, so I’d say it’s worth it! The mini pill does the same thing though if you’d prefer something non-invasive :) No I haven’t! I don’t really know anything about them tbh 😅 That’s so good!! :)
Ps. It’s not free per-se, we contribute via NIC’s (national insurance contributions) and taxes, that said we pay very little and I personally feel we should pay/contribute more from earnings, until I became too sick to work in 2010, I’ve always worked and been a higher rate tax payer. Sadly my chronic illnesses are many and worse plus fighting the c word also on and off...
I know, but it’s common knowledge that England’s health service is funded in that way, so I didn’t feel the need to explicitly state it
This is why I wrote my book because I wanted to shine light on the Illness and guide anyone that's going through the sickness. It's a short novel that's entertaining but with a message...I love stories with messages and awarenesses. I was inspired by my childhood when I would see plays or tv shows that were so entertaining. Also that spoke my language...that's the way I see my art form being very witty, personable, relatable, and experienced of the messages that I'm writing about...I want to put chronic Illness on the map and I want to change the perception...I want more support for us...So please my community, friends, family, followers, and lurkers 😂 if you are a reader please support my movement. It's available on Amazon as an ebook, short novel, and 45 minute long. I did an ebook version because people are into their phones. I do everything on my phone. I have all kinds of reads on my phone. Thankyou Fabs 📚📚📚 P.S I GOT MORE BOOKS COMING SOON Love Queen Alika
good luck with your book!
Healthcare in US is horrendously expensive and they’d health insurance will provide a wheelchair if you qualify and if you have insurance. Most people only can afford insurance if it’s provided through work. Even if you have insurance through work you’re likely contributing thousands of dollars a year yourself through premiums alone, then there are deductibles that need to be hit and copays so it is way WAY more expensive
I've heard different things from different people in the US, so I think it varies a lot!
I understand where you're coming from about the wheelchair. I live in the US. And I had my company pay for one for me. However, it's a bit more complicated than it seems. It's depends on the company that insures you. For instance, mine would only pay for the chair you talked about the NHS funding. There are companies that will fund electric ones. I ended up switching. Only bc that plan was military and my husband got out. The new company, through the employer, has exorbitant co-pays and deductibles. My yearly out of pocket with that company with my condition in this country is almost 7,000 dollars. And that's just me. And that includes coverage by Medicare for me bc I'm disabled. Add my family in there and you're looking at 12k. I'd trade you my scooter for your health plan. Just
sayin '.
My family friend just died from cancer at 20 years old because the NHS doesn’t fund the treatment she needed, but people can get it in the US, so it isn’t always greener on the other side, just sayin’.
@@GeorginasJourney that is terrible and I would never wish that on anyone. Your friend that it happened to, nor yourself or their family who was left behind to pick up the pieces. The system you have isn't perfect by any means. I would never argue that. There are people in my life who have died bc they can't afford to even step through the door of a doctors office to get diagnosed. Bc they couldn't afford to pay the thieves who run our insurance companies to be insured. So I get it. I'm angry too. I guess I just feel like your imperfect system is less deadly than mine bc there's more access. Maybe I'm wrong. But that's the way it looks from here. I feel I'm pretty privileged to be able to pay all the money I have to to not be bedridden. There are too many people I know who aren't that fortunate, or who just don't make it.
My POTS is sooo affected by my hormones. And I have never “met” anyone else that feels like that too. I have yet to find an answer. I also have PCOS that messes my hormones up too, so I feel so yucky. They tried me on the pill - many different types and it made no difference.
Which catheter do you use? I don’t like the ones I use and it’s so awkward trying to find ones I’m better suited to.
Is your bladder problem related to EDS? I have EDS as well, but also Fowler’s Syndrome. So my bladder is more or less retired lol.
Ooh I find it so hard to cath on the toilet - when you do it on the mat, do you use a bag to empty in? Sorry so many questions. I have no one to talk to about this :)
Wow, they would only give me 3 months of contraception at a time.
I’m lucky I’m not in need of a chair yet, but I’m glad you have managed to get yourself a chair, despite all the hard work x
What is your hand splint called please? I had to buy my ring splints too. I know we are very lucky in the UK compared to some people.
What medication are you on for POTS if you don’t mind? X
SnoWhiteSally Hi! I use the Coloplast compact set! It’s great! Yes, it has a bag attached so I do it straight into the bag on the mat. We think it is related to my EDS, yes! My bladder tears easily due to tissue fragility and can’t contract all the way to empty due to the collagen problems & it being weak. They only gave me 3 months to start with, but if you’re at low risk on the one you’re on, you can go back and ask for a longer supply. I have videos about many pots medications, you may find them helpful. I’m going to do a video about the specific meds I’m on & the braces & stuff I use soon as it’s a lot to type. Hope this helps for now xx
I wish I could migrate there... In USA even being on disability (in my state) I get NO breaks for medical supplies I pay full price for everything.
Jeffinetly JefFBi what sort of costs does that entail for you?
@@GeorginasJourney over 300$ per month
Jeffinetly JefFBi that’s a lot, but I’m glad it’s not more- I have an American friend who had to pay $1,100 for one med alone! I actually spend an additional £150 on medical care items a that I was too embarrassed to talk about (& actually forgot about) per month, so I know how it feels to have such that sort of expense :/
@@GeorginasJourney what kind of products are these if you dont mind me asking? I dont know how you do it alongside normal student expenses... you are an inspiration xx
eileen bruce medical products. In my first & second year at uni I got a low income grant and a high student finance amount as I’m from a low income family, that covered all of my student and medical costs. My university also paid for my textbooks in my second year as I got an award for achieving the highest marks in my school (a school is a group of related courses- I’m part of the School of European Culture & Languages). Thank you xx
Hi sorry what was the medication u take to prevent utis i self cathrise and all ways get infection s x
Lou Lou hi! It’s D-mannose and has been life changing for me! Although it’s most effective if you can go naturally on your own a tiny bit- I can’t when my bladders full, but as long as I try & go a tiny bit when my bladders less full, it stops me getting UTIs at all! It works by stopping the bacteria from being able to stick to your urinary tract so ideally you need to be able to pee on your own a little bit to flush the bacteria out of the tract, as catheters don’t really do that. I’ve always been encouraged to try to go naturally since I first started catheterising, but the UTIs didn’t stop for me until I started this medication
Do you get any benefits alongside student finance e.g. PIP or something? Do you get extra student finance?
eileen bruce I earn some money from my UA-cam channel
i really wich u the best, have you hear about the fibro guy? he is in the uk seems to be that he is really good with working with people with hypermovily joints symdron c:
Napoleón Villegas thanks- the hyper mobility doesn’t cause me too many problems, I have a lot of conditions that affect my internal organs, which is what causes me the most problems
@@GeorginasJourney i feel you :( have spend some trubles but nothing so difficult, i really wish you for the best c: keep going. have a nice day/night and all that stuff
Napoleón Villegas thank you, you too!
i get my incontinence pads free im trying out their washable rang i have chair from hospital but for independence i funded a power chair.i get my splints free.when im a dentist i tell him about pain he ajust it.i was in hospital i took enough pads in for time they said id be in for.i was in for a lot longer i ran out of pads they were none available after wetting bed a few times i begged for help i said id rather sit on a bed pan than lay in my pee it was so embarrassing i said id be better of at home.id check out if you can get free meds or low waged help.i thought i was the only one that loads of stuff just to pee .even when i go out thanks for sharing
Many people have urological problems, you’re definitely not the only one- and especially using pads. Catheterising is less common, but there are still a fair amount of people who have paralysed bladders like me and so need to use them. But as I said, loads of people are dealing with urological problems as it’s very common, you just don’t see it as it’s something that’s dealt with privately
It must vary between doctors surgeries - I am so medically complex that my GP surgery wont allow me to book single appointments - I can only book double appts, even for same day appts
Sophie Hobley that’s really interesting! I’m part of the big chronic illness community on Instagram and don’t know anyone else who that’s the case for- your doctors Surgery sounds great as I struggle to get single appointments even when I’m really ill!
@@GeorginasJourney my drs surgery has many flaws but they will always see me. Even if I ring late in the day they'll do a phone consultation. And if I ring anytime in the morning I'll get a double slot pretty much. So I guess in that regard I'm very lucky.
Sophie Hobley I’m glad you’re able to access help when you need it :)
@@GeorginasJourney lol! I sing their praises and then spend a full day in tears trying to access a regular prescription! I'm not sure who invented GP receptionists but they can be cruel creatures sometimes!!
Sophie Hobley can you write a complaint?
Are you on any income support/UC/JA/ESA, I am on ESA and It lets me get all my prescriptions for free which is such a relief. When I did start ivabradine, I did have to pay for the first 3 months to prove that I needed it and it was about £90 per month, thank god it’s covered now!
ella I used to be on ESA, but stopped it when I came to uni! That’s crazy about ivabradine, I just paid my normal prescription price for it when I was on it!
Have you tried claiming for NHS low income scheme? I was entitled when I was a student and lived in uni halls. Not many people know about it supposedly.
I have had double and triple appointments.
Sarah I have but i didn’t qualify for it for some reason (definitely wasn’t income as I don’t work & im a student- but I can’t think what it was off the top of my head 😅). That’s really good!
@@GeorginasJourney I know of people not qualifying when they lived at home as the student loan was classed as too high an income when didn't have to pay rent!
Sarah ah I see! I’ve personally never lived at home during uni though :)
I live in manchester and got my braces from the hospital im 16 so i got them for free
That's interesting, I think it depends on individual circumstances as well as varying between areas! I'm glad they were able to provide that for you though, that must be difficult to deal with at sixteen. I got ill when I was 17, but my instability and joints issues didn't become problematic for me until i was around 19-20
Are getting your catheters from charter? If so they always send me wetwipes, I don’t have to pay for my catheters either
Yes. And they send me hand wipes, but they are not suitable for intimate areas, is that the ones you mean?
Ah yes.... you’d think they’d supply suitable wipes wouldn’t you🤦🏽♀️
@@JahJJMac yes! I hope they can add that sometime! I’ve considered talking to a GP about it and seeing if they can prescribe anything!
Those hand braces look ace
I’m also trying to fund a smart drive :(
ilovebrean my next video has a section on the pros and cons of the Smartdrive- I think you may want to watch it before you commit to trying to fund something like that, especially if you also need hand braces!
Georgina's Journey thank you I’ll have a look I need my hand braces but don’t wear them like I should as can’t do anything with them
ilovebrean can you get ones that work better for you somehow? How did you get your current ones?
Georgina's Journey I had some basic ones from the hospital then upgraded to the donnjoy comfort wrist splints and they are very good
The insurance company in USA are only concern about for profit. USA insurance company there’s a lot of red tape . I am on ssdi here and I have supplemental insurance and drug insurance. I pay 223.00 for both. Supplement I have so I don’t have hospital or dr bills. They payed my catheter when I use them. Here we have to fight insurance companies to get our health care. My wife doesn’t have health insurance. There’s more red tape and grey areas here. People have to the same thing here go through charities and go fund me page. To get medical needs. So far England health system is better. Oh did pay for your pull ups or briefs or are they covered. I have to pay for mine here.
RJ ROBINSON the taxpayers here pay for the majority of people’s healthcare, the reason countries like the US don’t have it is because your majorities view it as too socialist (which is not actually the case, the UK is capitalist). I use pads and yes I pay for them with my own money too. Some people in the US get that covered on insurance, that sort of thing depends on the person’s situation, not the country
I know it is hard to be in a wheelchair.But I dont know how hard it is to be in a wheelchair.
J Craft I think it differs for everyone! And the wheelchair itself actually makes our lives easier, it’s the disability itself or inaccessible places that’s the hardest part!
@@GeorginasJourney I'm sorry to ask you this question,it is your choice to answer it or not to answer it:Was that disability from birth?
J Craft my condition is genetic so I was born with it, however, onset of symptoms don’t usually start until puberty/teen years, so for me personally, I didn’t actually become disabled until I was around 17
J Craft also, when asking potentially sensitive questions, it sounds nicer if you say ‘do you mind me asking...’ or ‘ may I ask...’ As when you say ‘I’m sorry to ask...’ it sounds like you know you shouldn’t be asking whatever it is, or that you’re under some sort of obligation to ask it, which isn’t the case :)
www.amazon.com/s?k=Aaliyah+Invisible+Illness&ref=nb_sb_noss
good luck with your book!
why don't u try adult diapers
Steven Myers I use catheters because I have urinary retention and my bladder is too weak to contract properly
Do u get disability from the government? I'm 40 with classical eds. Just ruptured my pattela tendon and now struggling to get back to work. Worried how I'm going live
It will depend on where you live & how your disability affects you, but I’d say it’s worth applying 💕