Mobility/pip: Hi does anyone get the... - Fibromyalgia Acti...

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Mobility/pip

Fruitloop13 profile image
14 Replies

Hi does anyone get the mobility part of pip with a fibro/ chronic fatigue syndrome diagnosis ? If they have can u tell me wot u put on the form and how u worded it please ? Tia x

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Fruitloop13 profile image
Fruitloop13
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14 Replies
rhonasd03 profile image
rhonasd03

I get the mobility side, I cant walk without my crutch. My spine feels like it's being crushed when I walk. I try my hardest not to take painkillers as I have ibs both kinds so cant use public transport as cant predict when I need to go. Cant plan routes without help as brainfog is always misty. Really need someone with me, to make sure I get to where im supposed to be going, to make sure I dont fall. To stop me feeling anxious when seeing /meeting people.

ladytelita profile image
ladytelita

I receive it but also use crutches and a wheelchair. I also have thyroid issues, bronchiectasis, severe asthma and a breathing disorder. I am on a lot of pills.

Just think about how you feel on a bad day. What can you do on those days. If going for a jog is possible, obviously PIP is not for you, lol. But in all seriousness, the only thing I can suggest is be brutal to yourself and truly look at what you manage, whether it is something you can do repeatedly (example: you can walk for 10 minutes without rest daily. Or you can walk for 10 minutes but require several stops to rest in that time. Or you can only walk a few (or no) steps without discomfort/pain. You may be able to go further once in a while but this could not be repeated often and may cause to have to spend the next day in bed). You see the differences? They pick up on things like saying yes you can walk so far but unless you are specific about limitations that is all they see. Like on a good day I can read my book. On a bad day I cannot. I recently went through a couple of months of barely being able to read beyond a few words and my head would not take it in. Of course when I am really bad, getting up is success!

I understand the frustration and discomfort of the PIP process as I sort it not just for myself but for my disabled son who was written off for 10+ years at his last meeting and receives maximum everything. Not that he truly understands that sadly but it was a relief after the fear of moving from dla to pip cropped up . He can walk pretty well, certainly more than I can but because he is vulnerable he cannot be alone.

Also any assessments or reports from SS will help as well as medical assessments etc.

Best of luck

Dizzytwo profile image
DizzytwoModerator

Hi there, you really need to put on the form how your mobility effects you and not other people. Everyone sufferes differently and you can not use how someone's mobility effects them. And to word a form other than in your own words I believe would be unethical.

If your having mobilty issues then just answer the questions truthfully on how it effects you. Good luck and I hope all go's well with your claim :)

Momo

PS I see you have left your post unlocked to this community only. Most members prefer to reply to locked posts for privacy reasons. If you wish to lock your post this link will show you how.

healthunlocked.com/fibromya...

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi, you can contact FMA UK's benefit helpine on 0300 999 0055 (Mon, Wed, Fri 10.00-12.00) or email benefits.advice@fmauk.org

They can provide guidelines on how to apply for pip.

fibo profile image
fibo

I have just received it after 8yrs of trying 2yrs ago I got care only but have had to take them to tribunal every time, citizens Advice have helped me everytime I wouldn't be able to do it without them I can't remember what they wrote but I am in a wheelchair because I am so bad I can't walk around outside so have gone to the assessment in it but they are determined not to give it to you, last time I then applied for a blue badge and got it because I already have Pip even though it was care hope that helps

Fruitloop13 profile image
Fruitloop13

Thank u very much for ur replies I was told there is somewere I can pay and they have all the info u need to help u filling the forms in but I can’t remember wot it’s called anyone any ideas x

ALKT profile image
ALKT

benefits and work website i believe they have a subscription fee paid yearly .

Sid_Arthur profile image
Sid_Arthur

Yes, Benefits & Work provides EXCELLENT online information for what is required for the PIP assessments, including the effects of the most recent Tribunal Decisions ( - which can change how claims are assessed) for its members. Its fortnightly newsletter is FREE, but its online resources for all benefits forms is available to paid-up members only. However, the annual membership fee is likely to be well worth the cost, given the detailed information available.

SEE: benefitsandwork.co.uk - this is just for information ( & not a recommendation or advert for B&W. However, . . . . . if there is any BETTER source of information for unwell claimants filling in lengthy DWP forms, . . . . . I'd love to know what that is !). This organisation has considerable expertise with ALL the issues claimants have & continue to face with getting just & timely DWP assessments. The DWP does not have a good record for being fair to unwell claimants, or getting their awards right in the first place.

Also: you will be helping yourself considerably if you take your time in completing your PIP ( - & any other) DWP form(s). You can do this by:

a) requesting extension(s) to the submissions date ( - and keeping a note of these), if your circumstances reasonably require this;

b) calling or emailing your MPs' office, advising him/her that you need more time to complete this lengthy form & asking for his/her support. Hopefully this could result in a letter on your behalf to the DWP supporting any extensions you have sought.

Filling in the PIP form with technically correct information given any particular circumstances (hopefully !) increases the chances of getting the most appropriate decision in the first instance from the DWP. Further any 'odd' decision by the DWP is subsequently a tad easier to APPEAL if the PIP form was filled out according to present legal requirements for this important disability award.

In summary, take your time & get it as right as you can - with the resources at B&W, or elsewhere. It helps to know what legal criteria the DWP use ( - or is supposed to use !) in fairly assessing each case: reading & understanding this DOES take time.

Sid :)

Wed 23 Sept 2020

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Fruitloop13 profile image
Fruitloop13 in reply to Sid_Arthur

Thank u so much Sid I’ve just joined them hopefully it will help me thanks again xx

CM1EDSUK profile image
CM1EDSUK in reply to Sid_Arthur

The Benefits and Work site is undoubtedly good, but there are also completely free online resources. Benefits such as PIP are based on the probability that a claimant has the problems that they identify, rather than having a legal basis.

To request an extension in completing the PIP form, you simply just need to ring the PIP enquiry line: 0800 121 4433 & they will give a 14 day extension.

Grandma24and1 profile image
Grandma24and1

PIP is not judged on what health conditions you have but on how you manage pain etc.

I do hope this makes sense but I'm not doing too good. 😔😔

Lima6MCT profile image
Lima6MCT

TBH it doesn't really matter what others put on their forms as what effect Fibro has on them may not be how it affects you.

It may be worthwhile sitting down with pen and paper and going through the criteria writing down how & why they affect you. The criteria must affect you for more than 50% of the time to count. You need a total of 8 points for a Standard award & 12 for Enhanced award. I get all my points from "Moving Around" .

1. Planning and following journeys

a. Can plan and follow the route of a journey

unaided. 0

b. Needs prompting to be able to undertake any

journey to avoid overwhelming psychological

distress to the claimant. 4

c. Cannot plan the route of a journey. 8

d. Cannot follow the route of an unfamiliar journey

without another person, assistance dog or

orientation aid. 10

e. Cannot undertake any journey because it would

cause overwhelming psychological distress to the

claimant. 10

f. Cannot follow the route of a familiar journey

without another person, an assistance dog or an

orientation aid. 12

2. Moving around

a. Can stand and then move more than 200 metres,

either aided or unaided. 0

b. Can stand and then move more than 50 metres

but no more than 200 metres, either aided or

unaided. 4

c. Can stand and then move unaided more than 20

metres but no more than 50 metres. 8

d. Can stand and then move using an aid or

appliance more than 20 metres but no more than 50

metres. 10

e. Can stand and then move more than 1 metre but

no more than 20 metres, either aided or unaided. 12

f. Cannot, either aided or unaided, –

(i) stand; or

(ii) move more than 1 metre. 12

CM1EDSUK profile image
CM1EDSUK

Hi Fruitloop13 - as has been mentioned, PIP is about your individual difficulty with daily living activities &/mobility. I don't have fibro, rather the hypermobile type of a genetic disorder (Ehlers-Danlos Syndrome), & the pain this causes has been most likened to fibro.

What's important with PIP is that it's not about your diagnosis, but, as the PIP claim booklet says, 'How Your Disability Affects You,' as no 2 individuals with the same diagnosis will likely be affected in a similar manner,

The next important thing is to have an understanding of the activities/descriptors. Please see: cambridgeshire.gov.uk/asset... & read the notes at the end too. It's also important to take onboard the concept of being able to do an activity 'reliably,' i.e. safely, repeatedly (as often as you'd like), to an acceptable standard, or it takes you a long time. Altho not mentioned, pain should also be taken into account.

Both components (daily living & mobility) will be looked at. You should give a couple of detailed recent examples of any difficulty faced attempting/doing any applicable activity. You should say what happened, when, how was it difficult, what were the consequences, if any, of this.

You should complete the form indicating how you are on the majority of days, & be completely truthful.

Citizens Advice or a Welfare Rights advisor can help a person complete the forms but you would still need to be able to convey to them any difficulties you face. Hope this may help.

releasethemagic profile image
releasethemagic

See my previous post on this subject here healthunlocked.com/fibromya...

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