A worked example showing how each of the 12 PIP activities can be described for someone with Ehlers-Danlos syndrome or hypermobility. 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.
Ehlers-Danlos syndrome and hypermobility spectrum disorder are hard to put on a form because the problem is not that a joint hurts in one place, it is that joints will not stay where they are supposed to be. The ligaments that should hold them together are too lax, so joints partly slip out of place, which is called a subluxation, or come out fully and dislocate, and they do it during completely ordinary tasks. Fingers and thumbs give way on a knife or a peeler. Wrists give way lifting a pan. A shoulder comes out reaching up to a shelf or washing your hair. A kneecap slips while you are simply walking down the road. On top of that there is constant pain from joints that are always slightly wrong, bruising from very little, and healing that takes far longer than it should.
The biggest trap is being asked to do something once. Almost everyone with hypermobility can perform a single movement on request, and in a short assessment that is exactly what gets tested. Doing it once is not the problem. Doing it again is what pulls the joint out. The rules are clear that a single attempt is not the test. 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. If you can chop one carrot but your thumb subluxes on the second, if you can lift a pan today and drop it tomorrow, if a joint that goes out takes days to settle, then you cannot do that task reliably, and that is what your answers need to show.
"Safely" and "repeatedly" carry a lot of weight here. A dropped pan of boiling water, a dropped knife or a knee that gives way on a kerb are real risks, not worries, and it is worth writing down what has already happened rather than what might. The splints, braces, taping and crutches you use are aids the form counts, and so is the fact that you often still cannot manage even with them. The example below does exactly that, activity by activity. The DWP always makes the final decision, but describing your day 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 how your fingers, thumbs and wrists give way holding cutlery, a mug or a full glass, and what you have had to change, such as lightweight cups, two hands on everything or adapted handles. If your jaw slips or aches when you chew, say so and say what you now avoid eating because of it. Explain that getting through one meal without dropping something is not the same as managing every meal.
Explain the home physiotherapy and joint exercises you have been given, roughly how long they take each week, and whether you can do them without someone helping. Mention the splints, braces and taping you have to put on and take off every day, and anyone who helps you fit them or put a joint back in. Describe the pain relief you have to monitor and what happens on the days you cannot manage any of it.
Describe what happens when you reach above your head to wash your hair, including a shoulder that slips out of place, and what you have changed because of it. Mention grab rails, a shower seat or a bath board, and how unsafe getting in and out of a wet bath is with joints that give way. If you also feel lightheaded standing in a hot shower, say so, and say how often you go without washing after a bad dislocation.
Explain that lowering yourself down and pushing back up puts weight through hips, knees and wrists that do not hold, and mention a raised seat or grab rail if you use one. Describe reaching behind you to clean yourself with a shoulder that subluxes when you twist. Say how long it takes on a bad day and whether you need someone within calling distance.
Describe fingers and thumbs slipping out of joint on buttons, zips and bra hooks, and shoulders coming out when you pull a top over your head. Mention what you have swapped to, such as elastic waists, slip-on shoes, a sock aid or clothes a size larger. Explain that bending for socks and shoes risks your hips and back, and say when you need another person to finish.
Hypermobility does not usually affect your speech or your hearing, so this is often a straight No. What can count is a jaw that slips or aches so that talking for any length of time becomes painful, or the fog that comes with constant pain and broken sleep leaving you unable to hold the thread of what is being said. Only write that down if it is genuinely part of your day.
Keep this one to taking in written information rather than to eyesight. What can count is pain, medication or poor sleep wrecking your concentration so that you read the same page over and over and still take nothing in, or needing somebody to go through hospital and benefit letters with you. If you can read and understand letters and forms without help, say so plainly and move on.
This activity is about being with people, not about getting to them, so keep the walking under moving around. What can count is avoiding company because of the anxiety of a joint going out in front of others, or needing somebody you trust with you before you will face a group at all. If you can be around people and manage them without help, leave this one alone.
This one is about understanding prices and bills and making budgeting decisions, not about physically handling cash. What can count is needing prompting or help to work out payments because pain, poor sleep and the fog that comes with them stop you thinking it through, along with anything that has genuinely gone wrong because of it. If you understand prices and manage your own budget, say so, because an honest answer here makes the difficulties you do describe more believable.
This question is about planning and following a route, not about how far you can walk, which belongs under moving around. What can count is needing somebody with you in case a joint gives way and you cannot get yourself home, journeys you will no longer make alone, or overwhelming distress at the thought of leaving the house. If you can plan and follow a route on your own, say so and keep the walking difficulty in your moving around answer.
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 Ehlers-Danlos syndrome and hypermobility; 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 Ehlers-Danlos syndrome or hypermobility might describe an ordinary week, 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 joints, the ones that actually go out and how often, the splints, braces or crutches you actually use, and the help you actually need or go without, because that is what the assessment is about and that is what makes an answer ring true.
If there is one thing worth borrowing, it is the difference between once and again. Write down the task you can just about manage on the first attempt and what happens on the second, because that gap is the whole point of the reliability rules and it is the part most easily missed on a form. Being honest about what hypermobility does not change makes the difficulties you do describe 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 Ehlers-Danlos syndrome or hypermobility in your own words and we will write one full activity for you, free, before you pay anything.
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