Help im getting standard care on pip - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help im getting standard care on pip

sleepyang profile image
sleepyang
β€’23 Replies

Hi wander if anyone can advise me please iv been recieving pip starndard rate for about 2 years no mobility recieved, my question is my mobility is worse now than when i had my pip assesment due to both my knees needing replacing as i have Ostroarthitis in both plus my back which pip know about but i didnt know i had fibro then im now walking with a stick or my crutch in agony every day forgetting things fog brain more often so depressed im seeing a counciler as i carnt cope anymore do i tell pip or do i not im so scared of losing the standard rate of care as this is my only income apart from the 7 and half hours i work a week which is now getting to much for me after a fall i had which im now off work with for another4 weeks that will be 7 weeks in total with no sick pay as i dont earn enough to get this from my employer

hoping someone can help me please

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sleepyang profile image
sleepyang
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23 Replies
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peck profile image
peck

I'm sorry to hear your going thru all of this.Im from the US so I can't really give you correct advise but I do wish you the best!!! Peck 🐀

sleepyang profile image
sleepyangβ€’ in reply topeck

Thank you peck for replying anyway nice to meet you

peck profile image
peckβ€’ in reply tosleepyang

You as well!! Have a good night.Peck 🐀

sleepyang profile image
sleepyangβ€’ in reply topeck

You too peck hun xx

BlueMermaid3 profile image
BlueMermaid3

Hi there

Please may I strongly recommend that you get in touch with our own Benefits Advisor Janet.

I have given you a link which will give you all of her contact details:

healthunlocked.com/fibromya...

I am pretty sure that she will be able to give you some valuable advice.

Wishing you less pain and more peace

Lu x

Administrator

sleepyang profile image
sleepyangβ€’ in reply toBlueMermaid3

Thank you lu i think i may have already done this from a link from the home page it was benefit advice hopefully its the right one if not iv saved your link too thanks again x

BlueMermaid3 profile image
BlueMermaid3β€’ in reply tosleepyang

Hi again

Yes it was a link from the homepage.

If you ever need it again, the link is permanently pinned to the forum on the right of your screen in blue titled FMAUK Benefits Advisor xx

rosewine profile image
rosewine

Sorry to read your post and that you are struggling physically, mentality and with money. I thought I would just put what they call the descriptors there for you to have a look at. You need 8 for the standard rate and at least 12 for enhanced. You can only score one set of points from each section. From what you are saying you should come under 12d which us 10 points which under normal circumstances would be enough to get you the standard rate.

The trouble us as several on the forum have found a new person will look at the whole of your application again and could come to a different conclusion that the first so there is always a risk involved.

I personally would try and get help from someone like the CAB or our own benefit advisor Janet before making any decisions. Good luck let us know how you get on:-

Mobility activities

11. Planning and following journeys.

11 a. Can plan and follow the route of a journey unaided. 0 points

11 b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points

11 c. Cannot plan the route of a journey. 8 points

11 d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points

11 e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points

11 f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

12. Moving around.

11. Planning and following journeys.

11 a. Can plan and follow the route of a journey unaided. 0 points

11 b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points

11 c. Cannot plan the route of a journey. 8 points

11 d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points

11 e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points

11 f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

12 Moving around.

12 a. Can stand and then move more than 200 metres, either aided or unaided. 0 points

12 b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4 points

12 c. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8 points

12 d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10 points

12 e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points

12 f. Cannot, either aided or unaided, –(i) stand; or (ii) move more than 1 metre. 12 points

sleepyang profile image
sleepyangβ€’ in reply torosewine

Thank you thats great help and i think iv just send janet a email well itvwas benefit advise anyway from the home page thank you so much x

rosewine profile image
rosewineβ€’ in reply tosleepyang

Thats great. Fingers crossed for you.x

Rose54 profile image
Rose54

Hi

If you did inform them of the change in your condition you would be sent a new application form to be completed and again you would need to attend a medical.

Take advice before doing anything

Bluemermaid 3 and rosewine have given good advice .

Best Wishes

Rose

Hartleyhare2 profile image
Hartleyhare2

I'm sorry I cannot hep with PiP as I am still on DLA. When I wrote into them stating why my mobility had got worse I had a letter back in a couple of weeks putting me in the top bracket.

I'm terrified of having my first Pip assessment as from the horror stories you can lose it all depending on who is assessing you and they have percentages of people to fail though they deny this.

I can send you my best wishes and bright blessings for a positive outcome.

Patrick

sleepyang profile image
sleepyangβ€’ in reply toHartleyhare2

Thank you patrick i had my assesment a year and a half ago for pip the woman came across real nice and friendly took all meds and letters with me a friend also was asked lots of questions about how things affected me ect she asked me about walking i told her i cud walk about 50 meters but id be in agony and wud have to stop now id be lucky to walk 20 n still be in agony after first step anyway she got hold of my legs started twisting n bending my knees which are bone to bone and need replacing i cried out in pain i was in tears she asked if i had any pets i said a dog oh she said n who looks after it i said i have a dog walker and who feeds it she said i said my son oh she said so i said so am i not allowed to have a dog coz i have disabilities then she just looked at me horrible woman she was from atos and i got standard care nothing for mobility your right they do have targets to meet and most of them just write what they like dint listen n dont care hope your change over goes well good luck patrick n thanks for your reply x

Hartleyhare2 profile image
Hartleyhare2β€’ in reply tosleepyang

It may be worth looking into the fact this woman forced you into an act that caused you physical pain. I am pretty sure it is a criminal offence of assault but dont know if there are exemptions for medical practice. My physio says he will never do anything that causes me pain, we focus on movement rather than exercise. If you have to hurt yourself because they won't take your word then there is something wrong. I am sorry I am not more informed on this. They may write refused to do it rather than unable to do it. Unfortunately we cannot trust these people.

Best wishes

Patrick

sleepyang profile image
sleepyangβ€’ in reply toHartleyhare2

Thanks for your reply Hartleyhare2 really its my own fault i shud have stopped her she didnt even say anything when she noticed i was crying hard face woman!!! My physio also said theres no way she shud have hurt me the way she did. Done now but when i have my next medical not a chance of then twisting n pulling on my knees these people shudnt be doing medicals i really think it shud be a specialist in what your illness is not some jumped up i know it all iv read about it 😠

Hartleyhare2 profile image
Hartleyhare2β€’ in reply tosleepyang

Don't ever say it's your own fault! You are a vulnerable patient who is understandably nervous. She is supposedly a Proffessional Health Carer! It's clear to me she abused her position. My wife is an ICU Sister and wonders where they get these people from? Those who have failed in their medical career or poorly qualified. As nurses and others usually are driven by a desire to help people not the money.

Patrick x

sleepyang profile image
sleepyangβ€’ in reply toHartleyhare2

Theres no caring in the assesments iv been to just subjected to humiliation and not believed how poorly i really am, makes me laugh how can someone i know get top rate pip care and mobility has nothing wrong with walking infact walks his dog 2 miles along our coast each day goes to town on public transport to the cafe for breakfadt then jumps on another bus to his local pub for rest of the day if thats not wrong dont know what is,he also has a blue badge which he sells along with his car tax as he dosnt need it 😠 and we are made to struggle on with sticks n crutches wheres the justice sorry for the rant hes problely sleep right now while we are awake with our pain ect x

Hartleyhare2 profile image
Hartleyhare2β€’ in reply tosleepyang

KArma has a funny way of levelling things out sleep yang!

Patrick x

TheAuthor profile image
TheAuthor

Hi sleepyang

I want to genuinely wish you all the best of luck with your application to get PIP mobility if you decide to go ahead and try and claim it. I can see that you are going to contact Janet, and fingers crossed that she can help you in this matter. Please take care of yourself.

All my hopes and dreams for you

Ken

sleepyang profile image
sleepyangβ€’ in reply toTheAuthor

Thanks ken im so scared of losing what i already get so fed up but thats for your kind words

TheAuthor profile image
TheAuthorβ€’ in reply tosleepyang

I am not surprised my friend it is a big step to take, good luck :)

Mystique23 profile image
Mystique23β€’ in reply tosleepyang

I feel the same, I'm scared to rock the boat incase I lose my pip completely I only have standard rate until Dec 23 and I had to fight for that. Just reduced my hours at work from 35 to 16 and all my meds have increased over the last 2 months but scared to inform them.

Hope you figure out what's best for you.

I'm just hoping I get universal credit when I have my call next week.

Mad_scientist_ profile image
Mad_scientist_

Every application is different but to give some perspective both myself (with fibro) and a friend (who has MS) both applied for PIP and were awarded too few points for mobility to get anything. We walk with great difficulty and use crutches, get exhausted very quickly, have constant extreme pain (me) or paralysis/no feeling/tingling in her legs and feet (my friend) and can only walk short distances, but as we are both intelligent and can use computers we can plan journeys, even when it takes ages and scares the hell out of you when you realise what you need to do to get somewhere (eg to a new hospital).

Sadly the mobility element of PIP is such that unless you can barely stand and can't walk, you are unlikely to qualify. Someone with special educational needs is more likely to qualify for mobility help than those of use who have to push themselves until we break (as I did at the train station on Monday when I needed to change from a cancelled train to another platform, with no spoons left - I'm surprised I got home at all).

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