A worked example showing how the 12 PIP activities can be described by someone living with PoTS, postural tachycardia syndrome. Every answer is written in the first person, in the plain wording assessors look for, and each one weaves in the reliability factors that decide how an activity scores.
PoTS is a condition of being upright. Sitting in a chair you can look completely well, and that is the whole difficulty with putting it on a form. Stand up and your heart rate climbs by at least thirty beats a minute and stays there, blood pools in your legs instead of reaching your head, and within a minute or two the symptoms arrive in the same order every time: pounding heart, legs like concrete, hearing going muffled, vision greying in from the edges, then either you sit down fast or you go over. Some people faint outright, many more live in the near-faint that comes just before it. A form filled in at a table, and an assessment carried out sitting down, will never show any of that unless you write it down.
So the question to answer for every activity is not "can I do this" but "can I do this while I am upright, and what happens afterwards". Standing still is usually worse than walking, because walking keeps the muscles in your legs pumping blood back up and standing at a worktop, a hob, a sink or in a queue does not. Heat makes everything worse and it is worth naming every time it applies: hot water and steam in a shower, the heat coming off a hob, a warm room, a summer day, a bus with the heating on. Most people manage with salt and a lot of fluid, and with compression garments, and those things help, but they do not turn standing back into something you can simply do. Then there is the payback. After a wash, a meal or a trip out, you often have to lie flat with your legs up before you can do anything else, so one task takes the whole morning.
This is where the reliability rules do the work for you. An activity only counts as something you can do if you can do it safely, to an acceptable standard, repeatedly and in a reasonable time. Fainting near a hot pan or in a shower is a plain safety risk, so say what has already happened and who has to be there. Needing to lie down for half an hour afterwards means you cannot do it repeatedly. A meal that takes over an hour in stages is not being done in a reasonable time. Write about your worst and most common days rather than your best hour, and if the weather changes what you can do, say so, because a summer day and a cold one are two different conditions with PoTS.
Many people with PoTS also have hypermobile joints, digestive problems or long-term fatigue alongside it, and if that is you then those belong on your form as well; every condition you live with counts together, not separately. This example stays on the standing and fainting side so you can see how that part is described.Not every one of the 12 activities will apply to you, and leaving one alone is the honest answer, because an honest form is a stronger form. The DWP always makes the final decision, but describing your real days accurately gives your form the strongest chance of being understood.
What to cover for each one. Your paid form writes the full answers for you.
Describe what happens after food goes in, because blood is drawn to the stomach to digest and many people feel much worse for an hour or two afterwards. Mention nausea, feeling full after a few mouthfuls, or leaving most of a meal, and say whether you have to eat lying back or in small amounts through the day rather than at a table. If someone reminds you to eat and to keep your fluids and salt up, say so, and be clear whether you can finish a meal to an acceptable standard.
This activity is often underwritten by people with PoTS. Cover the whole routine: medication taken to control your heart rate or blood pressure, the salt and the two or three litres of fluid you have to get through every day, and any monitoring of your pulse or blood pressure you have been asked to do. Say who reminds you or checks it is being done, and what goes wrong when it is not. If you need help getting compression garments on, or exercises you have been given have to be done lying down with someone there, describe how much time that takes each week.
The dangerous moment here is standing up again, so describe the head rush, the greying out and any faint or near-faint that has happened getting off the toilet. Mention any grab rail you hold, whether you have to sit back down or put your head between your knees before you can move, and how long that takes. Drinking two or three litres a day means going far more often, including through the night when the symptoms are usually at their worst, so say how many times and what that is like in the dark.
Bending down is the problem, so describe what happens when you lean over to put on socks, tights or shoes, and whether you have to sit on the bed or lie back to dress at all. Compression tights or a compression garment take real effort to pull on and often need someone else, so say who does it and what happens if you go without. Explain how long dressing takes on a bad morning, how often you stay in the clothes you slept in because you cannot face it, and whether you have to lie down again afterwards.
This one is about speech, hearing and taking in what is said to you out loud, which is separate from the reading question. What can count with PoTS is brain fog thick enough that a phone call or an appointment goes straight past you and has to be repeated, or needing someone there to take in what a doctor said because you cannot hold on to it afterwards. Being too breathless or too close to fainting to get a sentence out while you are upright belongs here as well. If your speech and hearing are fine and it is only paperwork your concentration slips on, keep that at the reading question and leave this one alone.
Keep this one about taking in the information rather than about your eyesight. Describe the brain fog that comes with being upright and with a bad run of days: reading the same paragraph three times and not knowing what it said, losing your place, or not being able to hold the sense of a letter long enough to act on it. Mention who opens post with you and explains anything official, and give a real example of something important that was missed. The greying out of your vision when you stand belongs in the answers about standing, not here.
This asks how you cope with people themselves, so seeing fewer of them because you cannot stand or travel belongs with the mobility questions instead. What can count with PoTS is real dread of collapsing in front of others that keeps you out of company altogether, or needing someone with you before you will face a social situation because of what might happen if you go over. The low mood and anxiety that build up over years of being ill count here too, if they change how you are with people. If you are comfortable with company once you are there, leave this one alone.
If brain fog affects your concentration then it will show up in paperwork before anywhere else, so say what has actually gone wrong: bills unpaid or paid twice, direct debits missed, losing track of what is in the account. Mention anyone who now checks statements with you, sits with you to sort out a form, or handles anything complicated on your behalf. Be clear about the difference between everyday shopping, which you may be fine with, and complex decisions you can no longer make reliably on your own.
Read this question carefully, because it is about planning and following a route rather than the physical effort of getting there. If brain fog means you cannot work out a route, lose track of where you are, or miss your stop, say that plainly. Then describe why someone has to travel with you: standing on a platform or a moving bus with no seat, queues, and hot carriages are where people faint, and if you go over in public you need somebody who knows what to do. Say how far in advance you have to plan around toilets, seats and somewhere to lie down.
Give the distance you can manage on a normal day, how long you have to stop for, and whether you could do it again afterwards, because being unable to repeat it is central to this activity. The point most people leave out is that standing still is worse than walking, so if you can cross a car park but cannot stand in a queue for two minutes without greying out, write exactly that. Mention what stops you: the racing heart, legs giving way, having to squat down or sit on the kerb, and any faints outdoors. Say how much shorter the distance gets in warm weather and name any wheelchair, stick or rollator you use.
The tips above are general pointers. Your paid form gives you a full, ready-to-copy answer for all 12 activities, written from your exact conditions, medication, aids and bad days, not a general example. This is a worked example for PoTS; yours is written for you. £99.99 one-off.
This is a worked example, not a script. It shows one honest way a person with PoTS might describe an ordinary day, so you can see the level of detail and the plain wording that assessors are trained to look for. Please do not copy it word for word. Your own answers should reflect your PoTS: how long you can be upright before the symptoms start, what your warning signs are, how many times you have actually fainted, the aids and compression you use, and the help you get or go without, because that is what the assessment is about and that is what makes an answer ring true.
Two things are worth repeating for PoTS. First, write down what happens after the activity as well as during it, because the half hour lying flat with your legs up is what proves you cannot do the task repeatedly. Second, remember that standing still is not the same as walking, and say so, because an assessor who only reads about walking distance will miss the heart of your condition. Remember too that some of the activities will not apply to you at all, and that is fine. Being honest about what PoTS does not change makes the difficulties you do describe far more believable, so there is no need to stretch every question. If you would rather start from your own words, tell us about your health and we will write your answers from your own conditions, in the same first-person style, ready for you to read, edit and copy onto your PIP2 claim form or AR1 review form.
Tell us about your PoTS in your own words and we will write one full activity for you, free, before you pay anything.
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