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Ehlers-Danlos Support UK
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Applying for pip

I have JHS/hEDS and I applied for pip last October. I finally have a f2f assessment for next week. I'm really worried I won't get anything at all. Is there any tips you could give for the f2f to ensure I get the right amount of pip?

I'm in pain all the time and I'm always tired, I can't walk far and often not at all. Sometimes I can't shower as I'm in so much pain and I can't stand for more than 10 minutes without my legs getting stiff and very painful. As a result I struggle to cook meals and do basic tasks to look after myself. My knees dislocate almost every day.

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Have you taken the online self test for PIP? I found it very helpful and would suggest you fill it in honestly to find out where you score points and what level of PIP you can expect. Try not to worry too much, I know there are a lot of horror stories about PIP assessments online but do know that only people who have bad experiences tend to write about it. There are plenty of people who have good experiences with PIP.

I just had my assessment and it’s basically the same questions you get asked as you have filled in on your application form and a very basic physical (lift your arms, touch your toes etc) what you don’t have to do if it causes you pain.. I had a friendly assessor and the whole thing took about 40 min. Now I just need to wait for the results.

This was my second assessment (the last one was 3 years ago)

Try not to worry, just be honest and tell them how your EDS affects you. Good luck

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I have EDS too applied Nov had f2f granted standard award. Go in with recorder from Argos, look at fightback4justice for info on what to expect, take someone with you and provide evidence from physio medics etc. Emphasis you can't do things repeatedly due to pain. Good luck!

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You should get at the very least the basic but don't be surprised if you have to appeal. I'm lucky that I'm more able but never the less am struggling to hold down a job. I'm a newby to the condition n doubt I will get anything. But I have had experience with my adult son who has autism and epilepsy. We got support from social care when completing the form, as they can get the right wording that pip expect. I believe you can the same help from citizens advice. So if you do go to appeal maybe seek help from them to fill in the appeal form. Good luck, keep us posted. Hope you are successful. I myself may have to try n claim pip eventually so it will be interesting how you get on. It's early days for me as I'm eds newby.

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