Is getting PIP a horrible process?

[MumbleCrumbs]

I've had a disability since birth that has become significantly worse the last two years. I now need a walking stick to get around and I'm in a lot of daily discomfort. I've never asked for or been in receipt of any benefit but I'm beginning to think that pip may really help me in my daily life, especially with costs related to my mobility like getting taxis to my uni, etc.
However a close family member went through the process and has told me horrible horror stories about how humiliating it is, and how hard it is to qualify for anything at all, so advice and experiences on the process would be gratefully received!

It's not that bad really. You fill out the form, get as much evidence from hospital/gp as you can. Then you go to an assessment, where in my experience they are quite nice to your face but write a lot of nonsense about what you can do 😂. So then you might have to appeal, which will take a while. You will eventually go to an appeal hearing. A lot of these are currently taking place by telephone or video due to COVID, but this might have changed by the time you get to this point if you even need to. It's quite a daunting thing to go through I guess, but the success rate is good. With a go!

Worth a go*

And to be honest, if you've had this condition since birth and never claimed, the tribunal at appeal would be very sympathetic. Have a look at the descriptors and see what applies to you.

I went through the process for my disabled sibling. Found it quite straight forward and got the level expected.

It's quite taxing, with the huge form to fill in, as you really do have to put down EVERYTHING. But ultimately worth it if you are awarded PIP. There are guides online to help you fill the form in to give the best chance of getting an award. You have nothing to lose by applying! Good luck

As the previous person said, they don’t always write down what you say correctly. My husband sat himself behind the assessor’s screen so he could see what she was writing! He wasn’t scared to correct her when she wrote things down differently from what I said.
Eg:
Me “I can’t do XYZ”
She writes “finds it difficult to do XYZ”

I dreaded it but it was fine

I’ve helped four people apply who were all successful with their claim. I found the form quite straightforward, repetitive but straight forward. Really think about your condition and how it effects you. It may be upsetting when you have to think of how much help you need with simple tasks. Things you are just used to, for example needed a long time to get dressed or lacking motivation to get dressed. Then apply this thinking to all the areas on the form. Think about any medication you have to take and how this effects you. Mention both physical and mental (if appropriate) things. Don’t worry if you repeat the same information in different sections.

It’s not a laugh a minute.

I would recommend finding a charity to help you fill it in. I used DIAL for my son’s form.

If you can’t find anywhere local, Cerebra has a good written guide.

My application went in in June and I'm still waiting for an assessment or decision. It's a bloody long drawn out process.

I'm hoping mine will go through ok as I cannot walk unaided and need a wheelchair outdoors after a virus attacked my nerves last year. No idea from neuro or physio of if I will recover or how long it could take. Although I got a blue badge based on neuro rehab letter so keeping everything crossed.

PIP forms are ok, you just need to remember to put down what you are like at your worst, rather than having a good day.

PIP is available for all that need it, not just those who are unemployed because of a disability.

People will hate me for this but I’ve applied twice (well applied and then did a change of circumstances) and found it easy. The first time I had a home visit and the lady was really nice and despite the horror stories online her report was accurate and I was given standard rate for 3 years. After a year or so my conditions worsened and I did a change of circumstances, basically a new form, sent lots of evidence, they spoke to my rheumatologist and didn’t even ask to see me or speak to me and I was given enhanced rates on both elements for an ongoing period (essentially the longest award you can get, they still do a light touch review after 10 years).

So don’t believe everything online. It’s sad so many people have awful stories but people like me are out there and don’t often post about our experiences.

(For interest, my conditions are all auto immune type things - lupus, Addison’s, pituitary tumour, etc etc).

I help people all the time to do the forms and have sat in on a number of assessments. It is a lengthy process, especially at the moment as many areas still have a backlog for assessments. Most of the assessments I have sat in on the assessor has been fair, only one where I was outraged that she asked a terminally ill lady with spinal fractures to bend down etc. However most assessments are still by phone at the moment. They look at whether you can do the descriptor activities reliably, repeatedly within a reasonable time frame. So if you can shower yourself but it causes you pain and takes you an hour because you get fatigued and need to pace yourself and stop frequently, then make sure you explain that. Also explain how often you are affected as you must be affected for more then 50% of the time to score points on that descriptor. One of the most important things is supplying relevant medical letters/ reports with the form. So if you have had involvement from a physio who has suggested exercises/ acupuncture/ some kind of aid to help pain, then explain that and include a report.

@AdditionalCharacter

PIP forms are ok, you just need to remember to put down what you are like at your worst, rather than having a good day.

PIP is available for all that need it, not just those who are unemployed because of a disability.

This is poor advice .and so often banded around. It is fine to describe a bad day but you must explain how often they occur. If you say you cannot walk 50m because you can't on your worst day which happens a few times a year, then on your assessment date you are ok and walk into the assessment Centre ( some say they watch you ), unfortunately it is going to look like you have exaggerated your symptoms.

@Babyroobs

I help people all the time to do the forms and have sat in on a number of assessments. It is a lengthy process, especially at the moment as many areas still have a backlog for assessments. Most of the assessments I have sat in on the assessor has been fair, only one where I was outraged that she asked a terminally ill lady with spinal fractures to bend down etc. However most assessments are still by phone at the moment. They look at whether you can do the descriptor activities reliably, repeatedly within a reasonable time frame. So if you can shower yourself but it causes you pain and takes you an hour because you get fatigued and need to pace yourself and stop frequently, then make sure you explain that. Also explain how often you are affected as you must be affected for more then 50% of the time to score points on that descriptor. One of the most important things is supplying relevant medical letters/ reports with the form. So if you have had involvement from a physio who has suggested exercises/ acupuncture/ some kind of aid to help pain, then explain that and include a report.

I'm really nervous about an assessment. Like they will try to make me walk and I will fall and look ridiculous.

I can do 5 extremely wobbly steps alone (I couldn't even do 1 at the start of the year) I use a walking frame around the house and there is no way I could stand and walk for them to prove how bad my legs are!

I don't even know what happens in these assessments!

There are disability support groups that will help you fill in the form. It is long but they need to ask about everything.
You need to supply all the evidence you can, include letters from your GP and consultant that describe how your disability affects your ability to perform everyday tasks.
You then have a face to face interview. If you cant leave the house they come to you, otherwise you can google to find out where the centre is.
If you are turned down then appeal.

IME you need to keep copies of the form and your evidence letters, just in case they lose them.

@Babyroobs it is not poor advice, it is the advice given by many charities that offer a filling in service.

I've had help filling out forms, both for a family member and my son, and the advice has always been to give the worse day, and how often that happens.

Perhaps I should have elaborated further in my first post, I thought I had.

[quote AdditionalCharacter]@Babyroobs it is not poor advice, it is the advice given by many charities that offer a filling in service.

I've had help filling out forms, both for a family member and my son, and the advice has always been to give the worse day, and how often that happens.[/quote]
Which is what I said - explain a worse day and how often it happens but don't just explain a worse day as if every day is like that if it isn't.

It’s an admin job with a setting in the trail for me because I had to do it for ds and it involves listing all the things he struggles with which was upsetting. For myself I probably would find it fairly painless but I’ve never needed to so am guessing.

Cricketmum - At the assessment they will ask you questions based on what you wrote on the form and what life is like for you on a daily basis, what you struggle with, what causes you pain etc. the ones I have supported people with , the assessor has asked about medications, how often painkillers are taken, if they have therapy, who supports them, where they go out to etc and if they need someone with them.
I have only seen one assessor make people do physical exercises, the lady was crying in pain and I was telling her she did not need to do what the assessor was asking if it was causing her pain. These assesors do not like people like me chipping in, they just want to get the report done. Most of them have been kind, one or two have been very cold and clinical. I have seen some people who are being assessed get into arguments with the assesor about the system, not understanding why they need to be assessed. they are usually the ones who have no medical evidence to back up what they are saying.

The assessment is usually fairly easy. Its afterwards if you are turned down.

It's not you on your worse day, it's the majority of time.

Best advice is to get as much evidence as possible and make sure you make a note of the day and everything you could and couldn't do at the time, incase it goes to tribunal because you might find yourself trying to remember 2 years back.

Also at the assessment if you can't do something, don't attempt it. For example if it causes you pain to bend over and try and touch your toes, tell them that don't attempt it

The single most important thing is this - When it comes to the interview - record it! Everyone must record it. It is the only way to ensure that you can prove what you said! Do not ever trust they will record your replies correctly.

You need to make 2 recordings. I suggest buying 2 of those digital dictaphones. You have to inform them in advance that you will be recording it. Set them both in front of you and start recording. At the end you switch them off and ask them to take one. You take the other.

Be honest. If they ask you to do something and it will cause you pain then say I'm sorry, that is too painful, I can't.

Have evidence. Everything you have. Prescriptions, records of medical things, any reports, everything no matter how small.

Give specific examples of things that you cannot or find difficult or painful to do.

Don't leave things out because of embarrassment. You need help. You're entitled to help.

The advice to base the whole form on your worst day is very old and dangerous advice - you can get done for fraud doing that. But yes you can talk about bad days / better days / explain how many of each you have in an average week. That’s how I did my form. There were some things that were / are always bad / always the same and I was very clear that these things never change, they never get better etc. You have to really spell it out and also state what happens if and when you do things but can’t do them safely or without pain. For example, on a good day I can walk. I was very clear that I can physically walk unaided. But on a bad day I might be in so much pain I can’t leave the sofa, and if I push myself I either have to take so many painkillers I suffer with the side effects from these (dizziness / sickness etc) or I do myself damage joint wise and cause myself to suffer a flare up of my lupus related stomach issues which means I may soil myself if I have to walk any distance - so having a blue badge / car helps me in this regard. I was just really honest and detailed in the forms.

It's when you have a Mental illness that being assessed for PIP can be a nightmare as I found.
I have Schizoaffective disorder & the assessor said oh, you have Schizophrenia, & when I said no she wasn't interested.
Because I presented well and looked ok she made a lot of incorrect assumptions.
Also as I manage (just) to work part time that didn't help.

I got turned down but on Mandatory Reconsideration I got the Mobility award for my epilepsy.
I was too scared to appeal.
So I get £255 a month.

The joke is that I was offered a Motability car - when I said I don't have a driving license due to seizures!! Omg how stupid are they??