Applied for PIP, AIBU to be scared of being laughed out the place?

[someoneneededyoubree]

I have debilitating Fibromyalgia.

I cannot raise my arms above my shoulders most of the time. Someone is now having to wash my hair and style it for me.

I now need help to get in and out of my bath/shower, of which I'm soon going to be renovating to fit my needs.

Apologies for being vulgar, but there are times where I cannot bend or move enough to change a bloody sanitary product. Yesterday I was in tears to my DMum because I was leaking but physically couldn't change myself. She couldn't get to me quickly so an amazing friend came over just to help me sort myself out. That wasn't just due to pain, for that I might've been able to bite through. But physically, I cannot do much when I'm at my worst because of muscle weakness/stiffness.

I recently dropped a pan of boiling water that wasn't even that heavy. Luckily enough I missed my own body and it dropped on the floor entirely.

If I'm visiting someone or out and about, I need to now visit disabled loos at times just so there's something there I can hold onto to lower myself onto the toilet.

I can no longer attend work and I'm on long term sick, I have been for a few weeks. Luckily they have been brilliant and are a huge company that support me to the max. However, it means I can no longer afford my old car and I'm now left stranded without, unless I have my DMum to help me get from A to B.

I have had to get shoes I can slip on as there are some days I cannot pull shoes on, and most days I can't bend for long enough to tye laces

I have applied for PIP and just waiting for the form. I'm so worried about what the assessor at the face to face will be like. I'm so worried she/he will tell a pack of lies, which seems to be the case for so many genuine people.

AIBU to be scared?

I just don't know what to do anymore. I really need the financial assistance. My DMum is a God send and I'm lucky to bloody have her. I'd be gone for if I didn't, I'm not sure what I'd do. From the outside I look fine, just very sore if I try and walk on good days. On bad days, I cannot walk more than a few steps and need my wheelchair. On other days, I have crutches. I have a DS who I'm tremendously lucky to have so much help with. He is an amazing little boy and I feel like I'm letting him down. But I know I'm not, he's bright and happy.

I have been told to include with the form -

•GP letter explaining how my condition impacts me
• A diary (a week's worth), explaining how I've been each day and how my condition has impacted me
• Letter from a consultant (fingers crossed I can get this in time)
•Letter from my DMum explaining how she thinks my condition impacts me, and how she helps me, such as helping me prepare a basic meal, washing my hair, on bad days, dressing my lower half

I am 20 years old and I feel so devastated that this seems to be my life, for now. The condition has been with me since the age of 14. It gradually gets worse as I get older, it seems.

Some times I go through stages where I'm feeling fantastic but I'm then slowly but surely back to square one, often worse off.

I'm almost exactly the same as you. Fibromyalgia that causes me to use a wheelchair part time. I need someone to help shower me. Cook for me (as I'm unsafe in the kitchen), I need help getting dressed and I have to have someone else do all the housework.

I get the Maximum amount of both parts of PIP and I'm in the support group for ESA. They will take you seriously but you'll have to go into detail about every tiny little thing you can't do. Don't downplay anything.

I highly recommend contacting your local CAB for help filling in the forum's as the fibro fog made doing mine incredibly daunting. Having that help and support made a huge difference. And don't be afraid to appeal if you get the wrong result. Over 70% of appeals are found in the claimants favour at tribunals at the moment and that number has just been getting higher and higher.

@Sootsprite2612 you and other people who help are a shining through the gloom.

What are your thoughts on recording the interview with the proper notice and equipment? I've been advised by several people who did that their assessors could not then backtrack, but every one of those people I've spoken to took a disability advisor with them as advocate.

I advocated for a family member but didn't record the interview and the report that came back was in places really poor. Tribunal was the only point where I felt as though anyone had read the initial form we submitted.

OP, Don't forget to request a copy of the assessor's report at F2F, you'll need to know what they've said.

Also be aware of this,
www.facebook.com/notes/fightback/tips-on-trick-questions-you-will-be-asked-at-the-atos-medical-or-tribunal/10152718612705565/

Really sorry to hear of your struggles. Hope you get all the help you need. All the best

Thanks again for the replies I'm certainly taking everything on board. It's nice to know I'm not alone.

aL So sorry you're going through similar. It's rotten. I hope the PIP is of good help to you and makes a bit of difference x

I applied for pip last year even though it appears I could probably have had it earlier (I didn't really know about it). My experience was nowhere near the awfulness that is described by many thankfully.

I sent in the form and put the name of a friend on it who would help me on the day. I didn't send evidence, or keep a diary, or anything really. I just put the name of my Dr, the Physio and the Rhuemotology consultant. I answered the questions honestly but made sure I filled in the blank pages about how my day really was. So, for instance, where it said "can you prepare and cook a meal" I ticked something like "sometimes" but in the comments section I wrote that I could prepare a meal some days but I was prone to accidents because of pain in my hands and shoulders, that it took me much longer that a healthy person, and that I could not reliably get myself a meal every day. I also made a point of saying (for each task) that it was hard to describe the feelings of total exhaustion and amount of pain that completing this simple task daily put me in.

The assessor was quite businesslike but she went through each question on the form and my answers and I reiterated that although I had to carry out some of the tasks because, simply, I had no choice, completing the tasks took me a long time, caused huge amounts of pain and would leave me feeling exhausted for much of the day.

She did a mobility test which was fair. I was unable to do some of the things, ie stand on tiptoes, but some were ok.

I was amazed to get the lower care element and the higher mobility element.

It might not be as bad as you think because online seems to be support for those that had a bad time. Be as honest and as clear as you can and make sure that you use the comments section to make it clear how hard life is by giving examples.

A couple of weeks later I had a phone call to,say that the assessor was coming to my home in a few days time.

Sorry, that should have been the assessor was coming to my home a couple of weeks after I posted the form to them.

YANBU I am afraid!People without arms and legs are being awarded 0 points. Prepare to fight! I hope you are successful.

Look on Facebook for support groups often run by ex DWP employees.

The Benefits and Work guidance is brilliant! Professional benefit advisers recommend it.

Supporting evidence can make a huge difference. Any hospital reports, copies of letters to/from GP, test results, occupational therapy reports etc are worth their weight in gold.

Firstly because you're living the life my mother has and I know how miserable it is. Fortunately she was older developing the worst bits so didn't have to deal with the menstrual stuff, although the rest is bad enough.

Definitely apply for PIP, if you get through the assessment properly you should qualify for higher care and higher mobility.

Just remember though the assessor is basically there to prove you don't need it so from bitter experience here's our checklist we use for my mother's assessments now:

• get an advocate to call and ask about access to the building to double check it's accessible and your appointment is either downstairs or there's a lift. If it's not you can ask for a home visit.
• give them plenty of notice and insist on the assessment being recorded. It's only a tape recording but it clearly records your responses to the questions, they get a copy as do you (my mother's previous to last assessor wrote lies about her, oddly enough the recorded one didn't!)
• make sure you are accompanied to the assessment and in all seriousness if you're having a terrible day and having a shower is too much then don't have one. They aren't there to see if you can adhere to social niceties.
• remember they are observing you all the time, on the way into the building, in the waiting room, when you leave etc
• if by some miracle you have a good day on the assessment day don't be a hero and try to show what you're capable of. They need to see what a typical day looks like rather than a random lucky day
• if you need help with something they ask about never answer yes to doing the task, always answer obviously truthfully that you need specific assistance and why
• be kind to yourself and give yourself time, if you get fibro fog processing stuff can be difficult. Make sure your advocate is aware of it and the assessor so that you can have questions rephrased or a little time to process it. If you don't have fibro fog I sincerely hope it never finds you

If you're not successful the first time ask for a copy of your notes and a mandatory reconsideration. They'll send you what the report says, this is what the decision maker uses to rank your PIP needs. They aren't evil, it's a tick box exercise but can only make a decision on what's in the report which is why getting the assessment 100% accurate is so handy as a starting point.

If the mandatory reconsideration doesn't work it never does because they're looking at the same flawed report as before then lodge a formal appeal addressing each of the incorrectly recorded parts of the report and send to the court clerks well ahead of time.

It's a crap system designed to make it impossible for those who need it to navigate without help/despair but when you're through the other side being able to get a car with your mobility element (or taxis if you prefer) and that extra cash for your additional needs makes a massive difference. It also means getting adaptations from the council care team is easier to access.

Best of luck

“The Benefits and Work guidance is brilliant! Professional benefit advisers recommend it.”

Interesting. My colleagues and i don’t recommend it because we provide the guidance ourselves for free (i think there is a small charge for benefits and work?)
I’m sure it is very useful especially if someone is doing the form themselves and not getting professional help from a benefits adviser. But there is also other (free) guidance out there eg the fact sheets I shared in an earlier post.

Anyway the good news is that there are lots of sources of advice and guidance out there

MrsBlaidd Thank you so much for being so detailed, and everyone else that's responded

I do unfortunately have Fibro fog but it isn't as severe as many cases I hear of. I'm just incredibly forgetful at times. For example, forgetting why I have entered a room. Forgetting what I'm doing mid way looking for something in a draw. Forgetting I've got something on the hob so setting timers etc

Sincerely hope I haven't caused any offence if I haven't replied as I've benefited from pretty much every response. Trying to get my head asking everything

Supporting evidence can make a huge difference. Any hospital reports, copies of letters to/from GP, test results, occupational therapy reports etc are worth their weight in gold

I thought I read that test results weren't actually of any benefited and I think the leaflet you get with what to include says not to include them? Or maybe I'm wrong and it's just images like x rays etc...

Your original list of evidence you plan to include (in your first post) is spot on

You don’t need X-rays or test results. Reports are useful on the other hand. Basically anything that explains impact of condition.

If you get a care assessment you could send a copy of the report as evidence.

I receive both components of PIP at the enhanced rate and you sound very similar to me. The face to face was daunting but the nurse who conducted it was lovely and never asked me to do anything that would cause pain. She was truthful in her report (ring and ask for a copy of the assessor's report a few days after your face to face) and I didn't have to appeal.

@Blank IME it hasn't made the greatest deal of impact - having an advocate go along with you does help especially if they are an advisor or welfare official.

I would disagree that scan and test results aren't helpful as in all the extensive work I've done - especially around tribunals- they're substantial and qualitative evidence that proves a physical root of a condition.

currently negotiating a poorly managed assessment on behalf of a client with fibro plus a whole load of other complex conditions and I do find that the condition is stigmatized among the assessment services.

OP if you would like to PM me i can give you my organisations details and I can talk you through the application process and check over forms. in my local area we are finding that CABs fill out forms in quite a basic manner without digging into the intricacies of the condition, especially with fluctuating or pain related conditions so it's good to get the terminology straight right at the beginning. I work in a specialist neurological hospital and do a clinic just for fibro patients so it's something I'm relatively well versed in if this helps.

That’s interesting Sootsprite thanks for sharing.

I do my fair share of PIP forms but I’m a generalist so I do other things too. I often consult with my benefit specialist colleagues when helping clients with PIP forms and evidence, but I am learning all the time.

I think Citizens Advice is generally excellent although of course it varies among locations and the adviser you happen to get. We do have supervisors and quality checks which ensure a certain standard as much as possible. Obviously there are some duds but I think they’re in the minority.

At my Citizens Advice you would get a generalist to help with the form but if it goes to appeal you would get a specialist and they are all very knowledgable indeed.

additionally the most effective forms of evidence are ones provided by professionals who understand the PIP criteria. there's no point a gp waffling on about how you can't go grocery shopping or bend down to take something out of the oven or do a load of washing as it's not considered relevant.

evidence needs to be specific in stating that your condition affects you for at least 50% of the time and should hit the descriptors you feel are most relevant to your condition. care assessments, OT AND physio reports and if you have been referred for pain management by a rheumatologist are all equally helpful.

also contact your local adult services to get an aids assessment for your home- it might make a real difference to your quality of life and again it's another form of evidence.

AND if you're on Income related ESA and receive the daily living componentnyou should get a severe disability premium if nobody claims carers allowance for you :) this is around £62 a week!

Use Citizens advice to help you fill out the form ‘correctly’. Sometimes a jobsworth is ‘marking it’ and even though you have no legs, because you did not say you have difficulty getting into a bath, they will score you zero on that .

Hi OP, sadly YANBU in worrying about this. I also have Fibromyalgia. I got awarded nothing at my assessment (6 & 6 points) but after tribunal I got standard care & HRM. I had Welfare advice help me. These people are worth their weight in gold.

What concerns me is that you say you are only on Tramadol. With the extreme stiffness you have described you should have been prescribed muscle relaxants, something like Robaxin, or even something like diazepam for bad days. I have slow release Tramadol, Co-codamol & Robaxin as standard, plus if I can get it, Diazepam for bad days. I also have other things like balms, creams & heat. There is so much more you could be trying that may make a massive difference to your daily life!

Hi, I get PIP higher rate care (none for mobility) for a condition which mainly affects me in terms of pain and fatigue. I was lucky, and my assessor was really lovely. I took my mum with me, which was helpful.

I was asked to do some mobility tests, such as bending and reaching certain things, and moving my neck etc. These are similar to things that you may have said you have had difficulty with in the forms (for example I said I struggle to prepare food because of neck pain when looking down).

What is really important is not to push through the pain to complete the movements, because that will count against you. I stopped exactly when I was in pain and not before (they do "informal observations" too to check you are telling the truth) and told the assessor.

One more thing I think helped a bit was thinking about the consequences of not having help, or needing a certain aid etc. For example: I need to be reminded to take my medication because otherwise I often forget to take it and then I am in horrible pain all day - literally that obvious! That is relevant for the forms and the assessment.

I hope you get PIP without too much stress. You deserve it, and nobody needs money worries on top of being ill. Also - regarding shoes - If I like a pair of (mostly comfy) trainers, I replace the shoelaces with no-tie elastic laces from amazon. More choice of shoes, less effort putting them on!

Didn't want to read and run.... Poor love my heart goes out to you. I'm 20 years older than you and have recently been diagnosed with a serious condition like yours. I know how much pain I am in on a 24/7 basis and how much it is getting me down... With very very little help. Have to seriously think about giving up my job in the next couple of months because I cannot continue like I am. Out of work alot.

💐 For you and i hope you find some relief soon or at least a little peace of mind to take the pressure off xx

When are we going to male this government accountable for what it did to disabled people, and reinstate DLA? That was a fair system.

It sounds like you would definitely qualify. However your condition must be expected to last for at least another nine months. I'm not terribly familiar with Fibro but do have one friend with it who was very bad a couple of months ago but is now back at work in a new job and looking after two demanding grandchildren on her days off so I'm assuming it is a variable condition ?? I get really annoyed when people say 2 write the form as if it's your worst day ". By all means describe a worst day and explain how often it happens. But if you say that you can't get out of bed ( because that is a worst day ) then on the day of the assessment you are having a good day and walk from your car to the assessment centre, it is going to look suspicious. They look at whether you can do an activity reliably, safely and within a reasonable time scale.
I cannot stress enough how important it is to send up to date medical evidence explaining how your disability affects you - so OT reports, drs / consultants letters etc are important.

I would also say that you should be cautious with the forms

Where it says can walk 50 meters (or whatever it is) it's just a tick box for yes or no. There is a space for you to write things underneath.

The problem is the question is not actually a yes or no question, it means can you do this repeatedly, without any pain and in a reasonable amount of time.

So if you could walk that distance, but it causes you pain and you can't do it repeatedly or you could do it, but it would take you longer than someone without your condition then you tick the no box and explain this in the comments part.

I hope that helps!

How was DLA a fair system ? It was mainly based on diagnosis and didn't reflect that two people with the same diagnosis could have vastly differing care needs. It was ridiculously easy to get and open to abuse.