Education and POTS

Suggestions from a young person for young people!

We are very grateful to Sophie who recently contacted us about the challenges she has faced at school in managing her PoTS.

As a young person with PoTS Sophie understands what a struggle school can be, particularly in a school that doesn’t understand PoTS!

After undertaking plenty of research, she was able to get her school to put in a number of accommodations and reasonable adjustments. This really helped her during secondary school, particularly as she approached the GCSE years and exams.

Following the concerns you posted on Facebook and Instagram, Sophie shares some ideas on how she made her experiences easier.

Please note these suggestions and ideas are based on Sophie’s experiences and we appreciate not all schools will be as accommodating. Knowledge is power though and having suggestions to put forward to your school will hopefully help. There is further information provided by PoTS UK on our website.

There’s a lack of/no understanding from my school about PoTS. Most people haven’t heard of it, what can I do?

• Sophie printed off the PoTS UK resources to give to the senior team. She found PoTS On A Page and 10 Facts About PoTS particularly helpful. She also asked her consultant to write a letter, explaining about the condition and the impact this may have during her school day.

• She also thinks that if you are undiagnosed but struggling with symptoms, you should still let the school know!

• Her school didn’t have a massive understanding of her condition, but some of the staff did their own research into PoTS so they knew what to do if needed. She was assigned to a member of staff that she could go to at any time of the day giving her the reassurance that there was always someone there.

I can’t work well in hot environments; this includes warm classrooms!

• Sophie was always allowed to have her water bottle on her desk, including in exams.

• She was allowed to fill up her water bottle or get water from the medical room/student services at any time.

• She suggests buying a mini USB rechargeable fan to have on your desk and always sit by a window if possible and ask to open the window whenever needed.

PoTSIES need to drink lots of water but I have restricted toilet breaks, any advice?

• Sophie suggests approaching your Head of Year or someone senior for a ‘toilet pass’ that can be used as many times as you need, at whatever time you need. Teachers then can’t say no and you can drink as much water as you need to.

I struggle to walk from one side of school to the other, and I then end up in trouble for being late for lessons. My heart rate goes really high because I am rushing, what can I do?

• Sophie said this was one of her biggest issues at secondary school so she requested permission to leave classes 5 minutes before everyone else. This meant the hallways were quieter and she could walk at a pace that suited her.

• If stairs are involved, most schools should have a lift that disabled students have access to. On a low energy or bad symptom day, the ability to use the lift can be a life saver, and something she recommends finding out about.

PoTS and exam accommodations advice.

• Sophie was able to do her exams in a separate room to everyone else and suggests putting a request in in plenty of time before your exams start.

• Take plenty of rest breaks- She was able get up and move around or walk outside (supervised).  She had a stopwatch on her desk that added up the time she wasn’t working on her exam allowing her extra time at the end.

• Take a salty snack and plenty of water into the exam hall! 

• All of these can be agreed by the school’s SENDCO. 

I struggle with concentration and am finding it hard to keep up – is there anything I can do to make this easier?

• Consider if you need to reduce your hours if this is a possibility.

• Sophie was allowed to work in the school library at times when she couldn’t concentrate. Her teachers didn’t have a problem with this.

• As exam season approached, she worked only in the library under the supervision of a specified member of staff.

• Her teachers extended homework deadlines if needed, this took the pressure off her if she was feeling particularly unwell.

There are a lot of things my school does that mean I have to stand up – how can I get them to help?

• Sophie suggests asking the school to provide you with a chair if you are standing up for long periods e.g. lining up for assembly, registers, exams, breaks or lunches.

• Ask for permission to stay indoors during breaks and lunches so there is always a place to sit.

• Instead of queuing for exams, request to go straight into the room where you leave your belongings and sit there until everyone is inside.

There’s a one way system in my school but I can’t follow it, my school can’t understand that it makes my symptoms worse.

• Sophie advises to ask your Head of Year or a senior member of staff for a note that says you are able to walk the opposite way to everyone else due to a health condition. She found this really helpful when the corridors were busiest.

I often feel like I’m going to faint in class, what can I ask my school to put in place so I feel safe?

• Sophie feels that a healthcare plan is a good idea; detailing your condition, how it makes you feel, steps to take in an emergency and an emergency contact. This can be distributed to all staff members so they are aware of your situation.

• Having a designated staff member or safe location to go to made her feel so much better.

• She was allowed to have someone with her if she went to get a drink. They were also allowed to walk her to the bathroom or medical room if needed.

• She was issued a ‘Time Out’ pass to sit in the library or medical room for as long as she needed, this was MASSIVELY helpful as it eliminated the stress of fainting in class.

Sophie’s key message is ‘Don’t panic. There are things that can be done to help you’.

There is further information provided by PoTS UK on our website.