EDS and PIP

Sheenarose1

Hi,I recently have been diagnosed with Ehlers Danlos syndrome type,i put in for pip nearly 12 weeks ago I’m just awaiting my decision but I’ve read so many horror stories,has anyone had any luck? 

sophialob

Hi @Sheenarose1! Welcome to the online community! I'm afraid I can't help with this but sending you the best of luck and hoping it all goes well

Chloe_Alumni

Hi @Sheenarose1 and a very warm welcome to the community! Many people do get PIP. I wish you the very best of luck! Please do let us know if there is anything that we can do to help

Sheenarose1

Thank you,I’m going out of my mind waiting,if you know of anything else that will help as I’m new to all this...I’m still learning about Ed’s and all the other things connected to it! Just a shame I was being fobbed off like I was going mad ?

Ami2301

Hi @Sheenarose1
Welcome to the community! Fingers crossed for you

miilreef

Hi there.
I have Hypermobile type EDS with a waiting to be diagnosed Dysautonomia and chronic fatigue. I had to go to tribunal but was successful at that point.
What was key for me was medical evidence of my diagnosis detailing which joints are an issue and how. My part was to describe how these problems limit my ability to carry out the activities that PIP looks at.
They key is whether you can perform the activities consistently, safely and to a reasonable standard and how often you require assistance, support or simply cannot undertake the tasks. Don’t be disheartened if you don’t get anywhere in the first instance. Message me if I can help in any way.

Sheenarose1

That’s very kind thank you 

poppy123456

Hi,

PIP isn't awarded based on a diagnosis, it's how those conditions affect you daily. You really can't compare 2 people with the same condition because we're all affected differently. Have you had a face 2 face assessment? Most people have these and it's rare to have a paper based decision. Did you send evidence to support your claim, they rarely contact anyone for this.

If you've had a face 2 face assessment, then you can ring DWP to ask for a copy of the assessment report to be sent to you. This will give you some idea what the decision will be as they mostly go with the report.

If you haven't had an assessment then waiting times vary depending on backlog in your area, the same with decisions, if you've had the assessment. Good luck.

Sheenarose1

Hi,yes I’ve had the face to face that was at the beginning of this month! I have quite a few things wrong with are part of the Ed’s I’ve had to give up work! I’m worried about ringing them 

poppy123456

There's nothing to worry about ringing them, you're only asking for a copy of the assessment report. If you live in the UK they will send it before a decision is made. Once they have all the evidence they need they'll either text or write you a letter to tell you they have all the evidence. Decision times can be anything from 2-8 weeks and sometimes longer.

Sheenarose1

I’ve haf a text saying I will get a decision within 4 weeks...I’ve just called them and asked for the assessment report...anexity is something I suffer with so waiting on a decision if affecting me,thank you for your help tho ?

Yadnad

Sometimes I really wonder why we bother filling in the PIP2 in any great detail. or even sending evidence in.
Many examples show that the assessor ignores most of them in any event and the DWP just rubber stamping the assessor's opinion.
My own PIP experience is a prime example.

Maybe the information that you would have put on the PIP2 and the associated evidence could go straight to the Tribunal when you appeal. It seems that they are the only ones that actually test and assess the evidence to come to the right conclusion.

poppy123456

Oh dear! Always so negative Yadnad. A lot of people claim PIP successfully without any problems at all. The more information that's put on the claim form the better....

Yadnad

poppy123456 said:

Oh dear! Always so negative Yadnad. A lot of people claim PIP successfully without any problems at all. The more information that's put on the claim form the better....

Well to be truthful I can't think of anything positive about the DWP, never mind PIP. I have had a long history of blunders and confusion caused by the DWP over the past 23 years of claiming some type of benefit or another.

Unfortunately your comment isn't true.

I filled out three PIP2 forms spending hours trying to work out what information they needed.  Not only were the forms filled with a lot of info, additional sheets were also attached.
Even evidence being a report from the Spinal Unit that when I was tested on their walking machine I fell off after just over 10 metres. They stated that the maximum distance walking would be less than 20 metres and gave the reason why.

The assessor's report had me walking 200 metres!

Whilst I now know what should be on the forms and what not to put on them the main issue has always been the assessment when looking at my ESA, DLA & PIP claims. Unfortunately because of the way I have ended up mentally I can come across as aggressive, argumentative and awkward (fight or flight mode). As when out of my comfort zone the fight mode kicks in. That really isn't me - well wasn't me until 1995. Those traits have been caused by PTSD and a brain injury (frontal lobe damage). I have reams of reports from all manner of mental health medics that have diagnosed these problems and why I have ended up with them But there is not much that I can do about it - the brain injury actually altered my personality back in 1995.

At 70 PIP is out the question now so all of the above is now irrelevant.

Sheenarose1

So I got my letter today,I was not awarded pip...so I’m going to appeal...

Pippa_Alumni

Oh I'm sorry to hear that @Sheenarose1, you must have been really disappointed. Do have a read of Scope's appeal guidance, and let us know if we can be of assistance.

Sheenarose1

Thank you pippa I will have a read! I did appeal earlier this year and it was rejected!! Because I was receiving pip then a review then said nope I was not entitled to it! So it was stopped,I appealed it,still no luck..I then got my diagnosis in July and symptoms are getting worse or my shoulder likes to semi discocate while I’m driving...so I re applied and I’ve got rejected again,I’m at my wits end now ?

poppy123456

Hi,

Did you have some help filling in those forms? To constantly re-apply with the same evidence as you previously did you'll most likely keep being refused. My advise is to get some help from your local welfare rights. Good luck.

Sheenarose1

Thank you I have an appointment at disk in a few weeks there going to help me!

Yadnad

Sheenarose1 said:

Thank you I have an appointment at disk in a few weeks there going to help me!

Would that be in Folkestone by any chance?
If so, good luck. There used to be a guy there years ago (in fact rather disabled himself) who retired. He was good so I heard 5 years ago.
No idea about now but the stories I hear are rated as poor

Sheenarose1

Oh well thanks for the vote of confidence