struggling will health condition at school

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mangosmoothie
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#1
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#1
Hi everyone. I have been suffering will dizziness/fainting/palpitations since July, and have only just seen a specialist yesterday. I was expecting to be told I was fine, as many people at school have been saying that I just have anxiety and are wasting doctors time, but it is actually much worse. I have a problem with my mitral heart valve, though this is relatively minor atm, and severe pots. When they done the active stand test, I almost passed out on the nurse and my heart rate went from 100-160. The cardiologist said that she doesn't want me on medication yet, but I need more tests to see if I have a genetic problem, as my mum is adopted so we don't know what runs on her side of the family. I am honestly so worried with how I am going to cope at school, I have nearly passed out a lot and have done in the toilets a few times, but I didn't want to tell my teacher. I am meant to be leaving 5 minutes early each lesson in case I pass out but the teachers wont let me. This seems so unfair, my other friends do lots of sport out of school, and I used to, but now I can't. the cardiologist seemed shocked I was even going to school. What arrangements can my school help with? I don't think I can cope with school how it is, as the doctor admitted I will probably pass out a lot. Does anyone have any suggestions please? Thanks for reading x
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Surnia
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Your parents need to contact the school about any arrangements needed to manage your health, with a doctor's letter if required.
Last edited by Surnia; 1 month ago
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CatInTheCorner
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#3
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(Original post by mangosmoothie)
Hi everyone. I have been suffering will dizziness/fainting/palpitations since July, and have only just seen a specialist yesterday. I was expecting to be told I was fine, as many people at school have been saying that I just have anxiety and are wasting doctors time, but it is actually much worse. I have a problem with my mitral heart valve, though this is relatively minor atm, and severe pots. When they done the active stand test, I almost passed out on the nurse and my heart rate went from 100-160. The cardiologist said that she doesn't want me on medication yet, but I need more tests to see if I have a genetic problem, as my mum is adopted so we don't know what runs on her side of the family. I am honestly so worried with how I am going to cope at school, I have nearly passed out a lot and have done in the toilets a few times, but I didn't want to tell my teacher. I am meant to be leaving 5 minutes early each lesson in case I pass out but the teachers wont let me. This seems so unfair, my other friends do lots of sport out of school, and I used to, but now I can't. the cardiologist seemed shocked I was even going to school. What arrangements can my school help with? I don't think I can cope with school how it is, as the doctor admitted I will probably pass out a lot. Does anyone have any suggestions please? Thanks for reading x
Hi! The school definitely needs to be let know. When I first was getting to terms with needing access arrangements, I quietly spoke to my teachers after the lesson and told them honestly that I didn't feel comfortable explaining, but I needed to leave early if I said so without any faff. My teachers trusted me, since I'm really not the type to try to skip school. Try having a go with that if you don't feel comfortable, and please reach out to your doctor or GP about managing and living with this whilst it gets investigated further. I fainted myself, and I know how terrifying it is, and how violating it is to have everything slip out from under you. Please PM me if you ever need to chat about it, and I wish you the best xx
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mangosmoothie
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#4
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#4
(Original post by CatInTheCorner)
Hi! The school definitely needs to be let know. When I first was getting to terms with needing access arrangements, I quietly spoke to my teachers after the lesson and told them honestly that I didn't feel comfortable explaining, but I needed to leave early if I said so without any faff. My teachers trusted me, since I'm really not the type to try to skip school. Try having a go with that if you don't feel comfortable, and please reach out to your doctor or GP about managing and living with this whilst it gets investigated further. I fainted myself, and I know how terrifying it is, and how violating it is to have everything slip out from under you. Please PM me if you ever need to chat about it, and I wish you the best xx
(Original post by Surnia)
Your parents need to contact the school about any arrangements needed to manage your health, with a doctor's letter if required.
My school does know, and they said that they sent all my teachers an email explaining my condition and what to do if I faint/feel faint, but only a couple mentioned it to me. I haven't been doing PE since August, and the teacher acts like its my fault, despite knowing exactly why I can't exercise. I sometimes black out in the toilets, but I can't really tell my head of year as they might be at the other side of the school. Last year I was being sent work to do when I was in hospital, and obviously I was too ill, then I returned to be asked where my work was? Honestly its a big mess. We have offered doctors letters if it will get me more help but they just say they don't need them. To be honest I think I need some sort of reduced timetable, or being able to work in the same room instead of going to a different building every lesson. thank you so much for your help x
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CatInTheCorner
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#5
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#5
(Original post by mangosmoothie)
My school does know, and they said that they sent all my teachers an email explaining my condition and what to do if I faint/feel faint, but only a couple mentioned it to me. I haven't been doing PE since August, and the teacher acts like its my fault, despite knowing exactly why I can't exercise. I sometimes black out in the toilets, but I can't really tell my head of year as they might be at the other side of the school. Last year I was being sent work to do when I was in hospital, and obviously I was too ill, then I returned to be asked where my work was? Honestly its a big mess. We have offered doctors letters if it will get me more help but they just say they don't need them. To be honest I think I need some sort of reduced timetable, or being able to work in the same room instead of going to a different building every lesson. thank you so much for your help x
Then I'd raise this with the headteacher, this is complete negligence, you could pass out on the stairs. The school needs to realise this isn't something they can ignore. tell your PE teacher politely to get over themselves, maybe they don't understand the gravitas of your health. Maybe take some time off school to catch up? I find when you don't have a structured day and work at your own pace you get a heck of a lot more done!
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mangosmoothie
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#6
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(Original post by CatInTheCorner)
Then I'd raise this with the headteacher, this is complete negligence, you could pass out on the stairs. The school needs to realise this isn't something they can ignore. tell your PE teacher politely to get over themselves, maybe they don't understand the gravitas of your health. Maybe take some time off school to catch up? I find when you don't have a structured day and work at your own pace you get a heck of a lot more done!
Thanks for replying, you've been so much help so far. To be honest, I have little warning when I pass out apart from everything going black, but I suppose that is me actually passing out. My school would go crazy if I done that, because it makes their overall attendance lower. It still hasn't sunk in, and whilst I'm glad to have a diagnosis, the fact that there's no cure is hard to deal with. The PE teacher is the most untactful person I've ever met, she still makes me get changed and she once made me tell her my heart rate to compare it to everyone else doing exercise (to be fair she did apologise after this). The only person who is nice to me is my French teacher, but that's only because of last year, when I was shaking during my French test as I hadn't had a chance to revise, and she told me in front of the whole class I got a bad grade. I feel awful enough as it is with all these symptoms, and I think it would help if I had a chance to be out of lessons for a couple of afternoons a week, even if it just meant I was revising in the library by myself. I am trying my best to look well to my friends, but they know I'm not myself. Sorry to ask so many questions, but do you have POTs? x
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CatInTheCorner
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#7
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#7
(Original post by mangosmoothie)
Thanks for replying, you've been so much help so far. To be honest, I have little warning when I pass out apart from everything going black, but I suppose that is me actually passing out. My school would go crazy if I done that, because it makes their overall attendance lower. It still hasn't sunk in, and whilst I'm glad to have a diagnosis, the fact that there's no cure is hard to deal with. The PE teacher is the most untactful person I've ever met, she still makes me get changed and she once made me tell her my heart rate to compare it to everyone else doing exercise (to be fair she did apologise after this). The only person who is nice to me is my French teacher, but that's only because of last year, when I was shaking during my French test as I hadn't had a chance to revise, and she told me in front of the whole class I got a bad grade. I feel awful enough as it is with all these symptoms, and I think it would help if I had a chance to be out of lessons for a couple of afternoons a week, even if it just meant I was revising in the library by myself. I am trying my best to look well to my friends, but they know I'm not myself. Sorry to ask so many questions, but do you have POTs? x
Of course! Your school needs to realise you are more important than they are. This is completely unacceptable, chat to the head. You need an apology from your PE teacher immediately, and an apology from the French teacher for being so incredibly rude. I'm genuinely in shock at how awful this is. You do not treat children this way.

Go to the head with the apologies you want and the accommodations you want - a separate room, not moving around, no PE, afternoons off, and cite the disability discrimination act/equality act 2010.

"The Equality Act 2010 says schools mustn't discriminate against a pupil because of their disability. This is unlawful under the Act. In some situations, schools must also take positive steps so that disabled pupils can access and participate in the education and other activities they provide."
https://www.citizensadvice.org.uk/fa...they%20provide.

What they're doing is illegal. Is there a special needs coordinator in your school? I'd get in touch. You could also sue if they keep on with this, make sure they know that.

Please chat with your friends and if you feel comfortable, talk to someone. A diagnosis is less scary when others around you know what to do when you become poorly. I don't have POTs, but I hit my head rather thoroughly and now have conditions as a result, one of which being fainting. You aren't alone, there are support groups online out there. PM me if you ever need support
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Anonymous #1
#8
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#8
(Original post by mangosmoothie)
Hi everyone. I have been suffering will dizziness/fainting/palpitations since July, and have only just seen a specialist yesterday. I was expecting to be told I was fine, as many people at school have been saying that I just have anxiety and are wasting doctors time, but it is actually much worse. I have a problem with my mitral heart valve, though this is relatively minor atm, and severe pots. When they done the active stand test, I almost passed out on the nurse and my heart rate went from 100-160. The cardiologist said that she doesn't want me on medication yet, but I need more tests to see if I have a genetic problem, as my mum is adopted so we don't know what runs on her side of the family. I am honestly so worried with how I am going to cope at school, I have nearly passed out a lot and have done in the toilets a few times, but I didn't want to tell my teacher. I am meant to be leaving 5 minutes early each lesson in case I pass out but the teachers wont let me. This seems so unfair, my other friends do lots of sport out of school, and I used to, but now I can't. the cardiologist seemed shocked I was even going to school. What arrangements can my school help with? I don't think I can cope with school how it is, as the doctor admitted I will probably pass out a lot. Does anyone have any suggestions please? Thanks for reading x
I'm currently in the process of being diagnosed with EDS. The teachers were never aware of this and because of that, I had to participate with things and have no accommodations made. If I knew about this diagnosis beforehand my life and education would have been a lot more comfortable. Fight and be persistent, it's incredibly important to get accommodations as it is only you who suffers.
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mangosmoothie
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#9
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#9
(Original post by CatInTheCorner)
Of course! Your school needs to realise you are more important than they are. This is completely unacceptable, chat to the head. You need an apology from your PE teacher immediately, and an apology from the French teacher for being so incredibly rude. I'm genuinely in shock at how awful this is. You do not treat children this way.

Go to the head with the apologies you want and the accommodations you want - a separate room, not moving around, no PE, afternoons off, and cite the disability discrimination act/equality act 2010.

"The Equality Act 2010 says schools mustn't discriminate against a pupil because of their disability. This is unlawful under the Act. In some situations, schools must also take positive steps so that disabled pupils can access and participate in the education and other activities they provide."
https://www.citizensadvice.org.uk/fa...they%20provide.

What they're doing is illegal. Is there a special needs coordinator in your school? I'd get in touch. You could also sue if they keep on with this, make sure they know that.

Please chat with your friends and if you feel comfortable, talk to someone. A diagnosis is less scary when others around you know what to do when you become poorly. I don't have POTs, but I hit my head rather thoroughly and now have conditions as a result, one of which being fainting. You aren't alone, there are support groups online out there. PM me if you ever need support
To be honest, I really can't see my French teacher apologising to me, despite what happened. She is hated by most students actually, and I can see why. I really don't expect an apology off her, because I know that she would say I'm lying. All I would like is some more support, my head of year is nice, but I don't really know what she can do. I know of some students who aren't in class all of the time, but I think that is due to behaviour and academics, and I am quiet in most lessons and am in top set. I will ask about having more of my lessons in the main building though, as I really hate walking for 10 minutes to get to a lesson whilst feeling like I will pass out. There is a learning support centre though, so could they help? I am really sorry about your fainting, honestly no one deserves this. thank you so much for your help, you've been amazing x
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mangosmoothie
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(Original post by Anonymous)
I'm currently in the process of being diagnosed with EDS. The teachers were never aware of this and because of that, I had to participate with things and have no accommodations made. If I knew about this diagnosis beforehand my life and education would have been a lot more comfortable. Fight and be persistent, it's incredibly important to get accommodations as it is only you who suffers.
That's absolutely ridiculous, did your form tutor or head of year not help? I guess I'm lucky really, at least some of mine know. I think I am being tested for HEDS as I'm hyper-mobile, regularly sprain my joints and have a problem with my mitral valve, as well as pots and gastro issues (though they are quite recent). I hope you get your diagnosis soon, you really deserve it x
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Muttley79
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(Original post by mangosmoothie)
That's absolutely ridiculous, did your form tutor or head of year not help? I guess I'm lucky really, at least some of mine know. I think I am being tested for HEDS as I'm hyper-mobile, regularly sprain my joints and have a problem with my mitral valve, as well as pots and gastro issues (though they are quite recent). I hope you get your diagnosis soon, you really deserve it x
Can't your school give you a card you can show staff? Frankly I'm appalled at the lack of support from your school - your PE teacher is unprofessional [I'm a teacher] - you should be able to go and sit in the library. PLEASE get your parents involved as what you are dealing with is unreasonable,
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mangosmoothie
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(Original post by Muttley79)
Can't your school give you a card you can show staff? Frankly I'm appalled at the lack of support from your school - your PE teacher is unprofessional [I'm a teacher] - you should be able to go and sit in the library. PLEASE get your parents involved as what you are dealing with is unreasonable,
Apparently they emailed all staff, but only 3 teachers knew and they had all taught me before or know my head of year well, which says it all really. I am meant to be leaving lessons 5 minutes early, but again, very few of the teachers know about this and are clearly confused when I talk about it, which is embarrassing for me, as I'm trying my best to hide my illness as it is. My mum is going to try asking my head of year, hopefully she will come and speak to me and actually make life easier for me. I agree about the PE teacher, but she did apologise, despite being after she heard me telling my friends I was upset about the situation. Thank you very much for the advice, I really appreciate it.
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#13
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(Original post by mangosmoothie)
That's absolutely ridiculous, did your form tutor or head of year not help? I guess I'm lucky really, at least some of mine know. I think I am being tested for HEDS as I'm hyper-mobile, regularly sprain my joints and have a problem with my mitral valve, as well as pots and gastro issues (though they are quite recent). I hope you get your diagnosis soon, you really deserve it x
Thats great, as far as I'm aware, POTs isn't classed as a disability (eventhough it is incredibly disabling) but hEDS is. If you do have it, there's nothing your school can do but make accommodations for you. I have been looking for an EDS diagnosis for 13 years so I never really bothered telling my teachers. EDS is progressive, if you have it, its better to get it sorted out now, it looks like it is heading in the right direction. Good luck
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mangosmoothie
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#14
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(Original post by Anonymous)
Thats great, as far as I'm aware, POTs isn't classed as a disability (eventhough it is incredibly disabling) but hEDS is. If you do have it, there's nothing your school can do but make accommodations for you. I have been looking for an EDS diagnosis for 13 years so I never really bothered telling my teachers. EDS is progressive, if you have it, its better to get it sorted out now, it looks like it is heading in the right direction. Good luck
Thanks for that. From what I've been told, it depends on how much impact it has on my daily life ect. The most concerning thing is the mitral valve problem, which is apparently common with HEDS, and I do struggle eating full meals, which isn't great either I guess. At the moment, any diagnosis is a good thing for me so school can hopefully do more for me. I am hoping to see an EDS specialist if it turns out to be that, as I would like some help with my gastro symptoms, apart from the tablets I have been given. Thanks again x
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-Eirlys-
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(Original post by mangosmoothie)
Hi everyone. I have been suffering will dizziness/fainting/palpitations since July, and have only just seen a specialist yesterday. I was expecting to be told I was fine, as many people at school have been saying that I just have anxiety and are wasting doctors time, but it is actually much worse. I have a problem with my mitral heart valve, though this is relatively minor atm, and severe pots. When they done the active stand test, I almost passed out on the nurse and my heart rate went from 100-160. The cardiologist said that she doesn't want me on medication yet, but I need more tests to see if I have a genetic problem, as my mum is adopted so we don't know what runs on her side of the family. I am honestly so worried with how I am going to cope at school, I have nearly passed out a lot and have done in the toilets a few times, but I didn't want to tell my teacher. I am meant to be leaving 5 minutes early each lesson in case I pass out but the teachers wont let me. This seems so unfair, my other friends do lots of sport out of school, and I used to, but now I can't. the cardiologist seemed shocked I was even going to school. What arrangements can my school help with? I don't think I can cope with school how it is, as the doctor admitted I will probably pass out a lot. Does anyone have any suggestions please? Thanks for reading x
Hello, I have POTs so I can understand to a degree what you're going through.

First of all, it seems to be a thing where some teens can develop POTs and then grow out of it when they reach adulthood. I think they relate it to a big growth spurt. Generally if you're diagnosed in adulthood or are still affected in adulthood, then that usually means it'll be a lifelong condition. So hopefully it's the former and things improve for you as you get older.

Secondly, there is treatment available for POTs. I know they said not trying medication but sometimes medication is the best option to help you lead a normal life with POTs, so it's something to consider. In the mean time, salt, water, keeping cool, avoiding overexertion and compressions socks are your best bet right now.

Thirdly, you should discuss these issues with your parents and your headteacher in a meeting to discuss how to make school easier for you. They should make accommodations for you.

It is sad to see your peers doing well and being able to be active but unfortunately, it takes some time to get used to having a health condition that can sometimes hold you back in that regard.

All the best x
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mangosmoothie
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#16
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(Original post by -Eirlys-)
Hello, I have POTs so I can understand to a degree what you're going through.

First of all, it seems to be a thing where some teens can develop POTs and then grow out of it when they reach adulthood. I think they relate it to a big growth spurt. Generally if you're diagnosed in adulthood or are still affected in adulthood, then that usually means it'll be a lifelong condition. So hopefully it's the former and things improve for you as you get older.

Secondly, there is treatment available for POTs. I know they said not trying medication but sometimes medication is the best option to help you lead a normal life with POTs, so it's something to consider. In the mean time, salt, water, keeping cool, avoiding overexertion and compressions socks are your best bet right now.

Thirdly, you should discuss these issues with your parents and your headteacher in a meeting to discuss how to make school easier for you. They should make accommodations for you.

It is sad to see your peers doing well and being able to be active but unfortunately, it takes some time to get used to having a health condition that can sometimes hold you back in that regard.

All the best x
Thank you so much for your advice, it is really helpful!
I am aware that my symptoms may eventually reduce/ get better over time, but I have no idea. My consultant admitted that some of my symptoms may be due to a slight heart defect, so I also may need treatment for this in the future too, though hopefully not. Also, they think I might have a genetic disorder that has caused my pots/ valve issue, so I don't know if recovery is possible, but I am trying to stay optimistic and realistic at the same time (which is hard lol).
Do you have any idea on what accommodations my school can make which will be useful? I would like to stay in the same building but I doubt this is possible, as English and maths are at opposite ends of the school. My doctor said she is not keen to medicate, but may change her mind once I have seen the genetic specialist (hopefully).
thanks again, also I'm sorry about your pots xx
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Napp
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#17
(Original post by mangosmoothie)
Hi everyone. I have been suffering will dizziness/fainting/palpitations since July, and have only just seen a specialist yesterday. I was expecting to be told I was fine, as many people at school have been saying that I just have anxiety and are wasting doctors time, but it is actually much worse. I have a problem with my mitral heart valve, though this is relatively minor atm, and severe pots. When they done the active stand test, I almost passed out on the nurse and my heart rate went from 100-160. The cardiologist said that she doesn't want me on medication yet, but I need more tests to see if I have a genetic problem, as my mum is adopted so we don't know what runs on her side of the family. I am honestly so worried with how I am going to cope at school, I have nearly passed out a lot and have done in the toilets a few times, but I didn't want to tell my teacher. I am meant to be leaving 5 minutes early each lesson in case I pass out but the teachers wont let me. This seems so unfair, my other friends do lots of sport out of school, and I used to, but now I can't. the cardiologist seemed shocked I was even going to school. What arrangements can my school help with? I don't think I can cope with school how it is, as the doctor admitted I will probably pass out a lot. Does anyone have any suggestions please? Thanks for reading x
Sounds like your teachers are being **** heads, i'd speak to the headmaster (or get your parents to) to lay our the situation and tell them that special requirements are required and theyre legally obliged to help take them into account. Itll help if you get a letter from your cardiologist (or whichever doctor) to show this as well.
When i was at school i had a friend who randomly fainted all the time (**** knows why) but since it could happen on the stairs they moved our sets classes allk onto the ground floor, ensured she was escorted between classses and went out of their way to help. Theres no reason your school cant do something similar. If nothing else though, remind them that theyre legally liable as well :lol:
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mangosmoothie
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#18
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#18
(Original post by Napp)
Sounds like your teachers are being **** heads, i'd speak to the headmaster (or get your parents to) to lay our the situation and tell them that special requirements are required and theyre legally obliged to help take them into account. Itll help if you get a letter from your cardiologist (or whichever doctor) to show this as well.
When i was at school i had a friend who randomly fainted all the time (**** knows why) but since it could happen on the stairs they moved our sets classes allk onto the ground floor, ensured she was escorted between classses and went out of their way to help. Theres no reason your school cant do something similar. If nothing else though, remind them that theyre legally liable as well :lol:
Do you think a letter with my diagnosis will do? Or referrals for other doctors relating to my condition? They can't really move all my lessons to the ground floor, because languages, maths, art and food tech are in complete different buildings (5 minutes away from the main building). I am going to get my mum to speak to the head of year again, and ideally meet with pastoral or the head to see what they can do, but I doubt that will happen. Thank you so much for your help.
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alyssajade23_xo
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#19
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#19
What I did for my school with trying to get them to listen (I have eds diagnosis and suspected pots seeing cardiology in 6 days thankfully) I sent them every single doctors letter I had including copies of referral letters and appointment summaries so every piece of paperwork i have and I emailed it directly to the head of sixth form (in your case you should probably copy in head of year/equivalent, pastoral manager and SENCo) for me the senco and teachers in that department were most helpful at pushing the other staff, also under the equality act they have a duty to make reasonable adjustments for you, quoting the equality act can help because they won't want to get themselves into trouble. if that doesn't work you should take it higher to headteacher and/or governors. parental input can help massively. Also worth speaking to the SENCo to see if they can get an occupational therapist to evaluate you, or gp should be able to do this as OT can input to the school as to what they think you need and what can help you. Also see what exam concessions you may be able to get like rest breaks or an alternate room. good luck i hope you manage to get stuff sorted!
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mangosmoothie
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#20
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#20
(Original post by alyssajade23_xo)
What I did for my school with trying to get them to listen (I have eds diagnosis and suspected pots seeing cardiology in 6 days thankfully) I sent them every single doctors letter I had including copies of referral letters and appointment summaries so every piece of paperwork i have and I emailed it directly to the head of sixth form (in your case you should probably copy in head of year/equivalent, pastoral manager and SENCo) for me the senco and teachers in that department were most helpful at pushing the other staff, also under the equality act they have a duty to make reasonable adjustments for you, quoting the equality act can help because they won't want to get themselves into trouble. if that doesn't work you should take it higher to headteacher and/or governors. parental input can help massively. Also worth speaking to the SENCo to see if they can get an occupational therapist to evaluate you, or gp should be able to do this as OT can input to the school as to what they think you need and what can help you. Also see what exam concessions you may be able to get like rest breaks or an alternate room. good luck i hope you manage to get stuff sorted!
Thank you! I hope you get your pots diagnosis, as horrible as it is, it's good to finally have an 'answer'. I am waiting on my cardiology letter summarising the appointment, then I will get my parents to send it to my head of year. My GP is very helpful, so I might try and get an appointment with him to see if he can write a letter to my school. Can I ask what adjustments you had at sixth form, just so I can get an idea of what my school can do. My school wont be impressed, as when we first spoke to them they listed all the things they will do to 'help me', but none of them actually happened unfortunately. Thank you again. x
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