PIP saga: Hi, my DLA (disability living allowance... - AMN EASIER

AMN EASIER

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PIP saga

SusanBr profile image
15 Replies

Hi, my DLA (disability living allowance) is coming to an end so have now applied for PIP (personal independence payment). A friend from Age UK came round yesterday and spent 2 1/2 hours completing a 30 page booklet. We found when completing, your upmost thoughts were in the points allotted to each question, rather than the disability!!!

However it was useful as I found that my AMN is probably more advanced than I realised in other limbs, like hands etc.

I know have to wait like a condemned prisoner 8 weeks to find out if I have my allowance discontinued or reduced. I have been told I will have to go for an assessment and if unhappy with outcome can take to a tribunial!! As if we don’t have enough to cope with, anxiety levels through ceiling!!!!

Interested to know what experiences anyone else has had with this, many thanks, Sue

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SusanBr profile image
SusanBr
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15 Replies
KazzyALD profile image
KazzyALD

Hi Susan, the best bit of advice I can give you, is to make sure you photocopy every page of that form before you send it. It means you can refer to it if need be, & it helps when you need to fill it out again.

SusanBr profile image
SusanBr in reply toKazzyALD

Thank you Kazzy much appreciated xx

KeithS profile image
KeithS

Hi Susan,

I went to an assessment about 5 years, got refused and foolishly just accepted the decision. I went again around a year ago and was successful this time.

What you need to understand is our disease doesn't tick the normal boxes. They were saying can you walk 50 yards? I can. However, my answer was I walk as little as possible, as it is a chore and the more I walk the more chance there is of me having a fall. Which is true of course.

Be honest but stress your problems regarding everyday life. I'm sure you'll be fine.

Good luck, Keith

SusanBr profile image
SusanBr in reply toKeithS

Apparently if u can walk aided or unaided they reduce your mobility, I can’t walk unaided particularly as I fall so much which I have put down. It’s a point system now!!!

Have to wait and see but many thanks Keith x

monkeybus profile image
monkeybus

Just to get overly negative. The adjudication is in the hands of a for-profit company. They get paid for refusals. The government has convinced everyone that anyone on "benefits" is taking the country for a ride. Yet Boris Johnson wants further tax cuts for the rich. The game is rigged.

I'm not just blaming the Tories, New Labour wasn't much better, but I don't recall many food banks under Blair/Brown.

Record every interview on your phone. Read up on what the criteria is to get accepted, then act accordingly at all interviews. Your symptoms are whatever you say they are.

If you are refused, book an appointment to see your MP. Even though funding was slashed long back, the Citizens Advice Bureau is always good.

You see what I'm driving at here.

Best of luck to any of us facing this, keep us posted.

Hillary profile image
Hillary

Hi Susan, the best advice I can give you is a place online called: benefitsandwork.co.uk , they do a guide on how to fill in the dreaded form. I also went through this in the last six months, they do a test yourself chart, which they will then mark, as CAPITA will, to give you guidance on how to fill it in. You should get enhanced rate for self care and mobility, indefinitely. You need to tell them your worst ever day is everyday. Express that your balance is zero and you will hit the floor if you try to stand and walk. They will ask you to exercise, if you get an interview, repeat the same as for walking.

Not sure if I’m helping here as my mind is a bit befuddled at the moment, bad night and too many pain relief tablets to think straight.

Just ask if you need any help

Hillary

SusanBr profile image
SusanBr

Many thanks monkeybus a Hillary. Luckily I have a friend from Age UK who helped me complete form and has given me a lot of advice. As you both say tell it as it is on worst day, balance, tripping and falling. I also have restricted movement of my right arm as well due to a fall and subsequent op. Can only raise to shoulder height and I am right handed!!!

Have to wait and hear in approx 7/8 weeks. Sue x

Cherie profile image
Cherie

Good luck Susan. I can't really add anymore to what has been said. I had a disability charity help me fill it in (taking 2 hours) 14 months ago. Having already had DLA for 5 years I was only given PIP for a further 2 years. I have a friend who is an ex nurse come with me to the interview and she was great.

SusanBr profile image
SusanBr

It’s ridiculous Cherie that you will have to reapply in 2 years as with our disability it will not improve!!! Originally I was given DLA for a lifetime, this PIP is so stressful!!!

Many thanks, Sue. X

Cherie profile image
Cherie in reply toSusanBr

My DLA was also for lifetime Sue. The only thing that my assessor may have made her say 2 years is that she seemed surprised that I hadn't asked for a review over the 5 years I had had it considering the deterioration of my problems. Maybe she thought she was doing me a favour! She didn't think about the stress.

SusanBr profile image
SusanBr

Oh dear Cherie, it is very stressful having to explain lots of details about yourself to a complete stranger who knows nothing about illness and just sat in front of computer typing in answers. Very distracting and what you say and they type will determine what will happen.

It’s done now and have to wait 4/6 weeks for an answer as to whether they determine if I get PIP or nothing!!!!

Sue x

Cherie profile image
Cherie

Hi Sue. Have you had any news yet?

SusanBr profile image
SusanBr

Nothing yet Cherie, have to wait 8 weeks so will chase next week. I had my usual DLA payment yesterday so they obviously haven’t made a decision yet!!!

Saw Dr Lachmann on Tuesday and he is doing a letter for me assuming I go to appeal. He is not very impressed with the system at all!!!

As we all know no new trials for women with AMN so carry on as normal can be lol!!

Thanks for asking and take care xxx

SusanBr profile image
SusanBr

Hi Cherie,

I’ve had my PIP letter today and very pleased to say it’s staying the same for an indefinite period. That is a weight of my mind as was expecting to go to appeal. Take care Sue x

Hillary profile image
Hillary

Hi Sue, so pleased you got the higher rate and indefinite for PIP, think they should give us extra for the stress involved.

Take care Hillary x

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