Education: Going to school when you live with PoTS
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What statutory guidance is there for schools in the uk:
- Pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education
- Governing bodies should ensure that school leaders consult health and social care professionals, pupils and parents to ensure that the needs of children with medical conditions are properly understood and effectively supported
More information can be found in the ’Supporting Pupils at School with Medical Conditions, Government Publication’
Ten top tips:
- Speak to your school SENco
The SENCo is the Special Educational Needs Coordinator. Every mainstream school has a SENCo who is a teacher who is responsible for ensuring children who need extra support to access school have their needs met. You can usually find the name of the SENCo on your school website, or you can ask another teacher in your school who the SENCo is.
Tell the SENCo that you have PoTS. They might not have heard of PoTS before, so you might like to show them the PoTS UK booklet or leaflet to help explain your condition. Remember that different people experience PoTS differently. Tell the SENCo how your PoTS affects you and what help you think you might need. Ask them what the school can do to help you.
If you are preparing to start a new school, you can contact the SENCo before you start. They can answer any questions you have, and meeting early can help you both prepare for your new school.
- Tell your teachers about your PoTS
Your teachers will usually need to know that you have PoTS, especially if you need to take medication or experience lots of symptoms in school. This is to make sure you are safe, and everyone is prepared to look after you if you are unwell.
There might be specific things you would like your teachers to know about you and how to look after you if you are experiencing symptoms. You might like to write these down and talk to your teachers yourself.
You might need changes in some subjects like PE to help you access the curriculum. For example, you might need to do activities that involve sitting (like cycling or rowing) more than standing. If you also have a related condition that makes your joints more flexible (like Hypermobility Spectrum Disorder or Ehlers-Danlos Syndrome), you should make sure your PE teacher/coach knows so that they can adapt exercises for you safely.
If you are worried about what your teachers will know about you, or think they do not understand, talk to your SENCo. They will be able to support you.
- Drink lots of water!
When you have PoTS it can sometimes feel like every doctor tells you to drink lots of water – but that’s because it helps. Remember to bring a bottle of water with you to school and keep it by your desk so that you can drink during the day. If you often forget to drink enough water, use something to remind you. For example, you might remember to have a big drink of water whenever you start a new lesson.
Some people find that heat makes their symptoms worse. If this affects you, tell your teachers. It is especially important to drink lots of water on hot days. You might also like to ask if you can sit near a window or door, so you feel cooler. Remember to take water with you for PE lessons too when you will be more active.
Your school may have a policy stating that you can only go to the toilet or get water at certain times of the day. If this is the case, they should be able to make reasonable adjustments if you need this due to PoTS. Your SENCo can help with this, or tell you who in school is in charge of making these adjustments.
- Plan your day
Look at the plan of your day and think about when you will have a drink of water and when you will be able to eat a snack, especially if you feel unwell when you haven’t eaten much. If you like to do sports or other lunchtime clubs you might have less time to eat, especially in secondary school. Think about how you can manage this and ask your class/form teacher or SENCo if this is difficult for you.
The law says that your school must provide for children with medical conditions, including PoTS. This means that having PoTS shouldn’t mean you can’t do clubs or sports or other things you enjoy if you would like to do them. You might need to talk to an adult about how to manage these things so that you can stay safe and well.
Some people require additional changes to help them access education. If you find walking around the building difficult, or have to wait outside your classroom for a long time, you could ask whether it is possible to relocate your classes so they are closer together. This can take some organisation so speak to your school SENCO as soon as possible if you think this will be helpful for you.
- Think about telling your friends
You don’t have to tell your friends that you have PoTS if you don’t want to however you might like to, especially if you miss school or feel unwell at school because of PoTS. You can tell your closest friends if you prefer, or you might like for your whole class to know.
Speak to your class teacher or form tutor about telling your class that you have PoTS. Some people prefer to tell their class themselves, but others would like their teacher to do it. Some people like to leave the room when their teacher tells the class. It is up to you what you prefer.
- Preparing for tests and exams
If you have sat tests or exams in school before, you might know what you find easier and more difficult with them. If PoTS affects your concentration, learning, or the amount of time you can work without a break, you may need access arrangements for your tests and exams. For example, you might need rest breaks so you can move around if the exam is long. Many people with PoTS don’t need access arrangements – it is more about how your PoTS affects you personally.
There are lots of rules about what you could be entitled to, and there are deadlines the school must adhere to when applying for them. So it is best to speak to your school SENCo as early as possible if you think you need support with tests and exams. If you are allowed to have access arrangements, you should have them for all tests, not just ‘big’ ones like SATs or GCSEs.
- Travel safely
If you are moving to a new school or becoming more independent, you might start thinking about travelling to school yourself. If possible, travel with siblings or friends so that you are not alone. You might have an arrangement with your parents where you message them quickly to confirm you arrived safely. If your PoTS affects your ability to travel safely and independently, you may be eligible for additional support to help you get to and from school – for example, to help pay for someone to accompany you to school, or to provide training on safe travel. You can find out more here:
You may also be eligible for a disabled person’s bus pass. You can find out more here:
The criteria for home to school transport and disabled person’s bus passes are different, so it is worth checking each website separately.
- Safety in school
If anything in school feels unsafe, or if you feel unwell in school, tell an adult straight away.
You might like to talk to your class teacher or SENCo about what will happen if you become unwell in school so that you can feel prepared. You might also need some things in school to help you stay safe. For example, students often sit on high stools in labs for science lessons. If you sometimes faint, this may not be safe for you. You might need a high chair with a back on it instead. Ask your teacher if there is anything you need.
If you don’t already have one, you can ask for a care plan (also known as an emergency plan or medical needs plan). This is a short document that details your medical needs and what support you will need if you become unwell. It can be shared with first aiders at your school and your teachers. You would create a care plan with a member of staff at school. To prepare for it, you might like to ask your doctor or nurse for advice. For example, you may advise them that if you faint, you should be laid flat on the floor. Should an ambulance be called straight away, or should your school wait for a certain number of minutes first? Your care plan should be kept up-to-date, so make sure to inform your school if there are any changes.
- Think about the future
Part of growing up is about learning to manage your PoTS for yourself. Some people find their PoTS gets better as they get older, and some people still have PoTS symptoms for a long time. Don’t let PoTS stop you thinking about your future. What would you like to study? What job would you like to do? What hobbies would you like to try?
If there is something you would like to do in the future, but you don’t know if you can while you have PoTS, you can speak to your class teacher, SENCo or contact PoTS UK.
To help you prepare for adulthood, it is helpful for your school to give you as much independence as possible. It is sometimes difficult to balance keeping you safe with allowing you to be independent. For example, if your school wants you to always be accompanied by someone else when you go to a different class or to the toilet and you find this difficult, could you use another system instead like a radio or medical alert device?
Having PoTS may mean you need to make changes at home, at school and anywhere else you go – but this shouldn’t mean that you don’t feel you can be independent at all. If you are finding it difficult to manage the safety measures from school, speak to your school about what changes would be helpful for you.
- Have fun!
There are lots of wonderful things about going to school. Living with PoTS doesn’t mean you can’t enjoy these things too. Remember to enjoy learning, have fun with your friends, and ask for help if you need it.
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This information is general information about PoTS and is not an alternative to medical advice from your doctor or other healthcare professional. You must always consult your doctor or healthcare professional.
Last review 25/07/2024
Next review 01/07/2027
Version 2