Applying for PIP

[DNE92]

Can anyone give me any tips on what to write on the form and the medical assessment? Is there also a panel that you have to attend? This is my first application.

I need to get my form in really soon so any help would be much appreciated.

Cheers

Lou

[Chelle2017]

are you in the uk ? if you are there is a great citizens advice page on their website that is really helpful . make sure you write everything as if its your worst type of day x

[Anne_Bonny]

Be honest, but within reason. It is far harder to catch someone out if they're being honest. I do understand why people tell you to write it as if it's your worst day, but I have seen people get sent away with nothing when their story doesn't add up. At that point, everything you say is a lie.

I have always found the benefits and work website extremely useful. In my opinion, well worth the money spent on membership. I am also happy to help you through the form and assessment if you would rather have some personal support. I have helped a number of people through the process so far and I am pleased to say they all found me useful! Offer's there if you want it.

Anne

[marky-50 in reply to Anne_Bonny]

hi,

It is best to write down as much information as possible and think about what you write down before rushing it.Prehaps get someone else to help you who you see and they may be able to give you advice from what they see how you are like on a day to day basis that you may miss.Also any doctors paper work you may have helps.Try and get your assesment done at home if possible if you get one.I was lucky as i had an ex nurse who did my assesment and got full pip.hope everything goes o.k. and be prepared for a long wait i waited nearly 12 months for my assesment.

[Borrow]

Hi,

I've just done mine so-

Write everything down!

Like a shopping list on some paper first and then write about each problem in detail and how they affect you on your worst days. The list will slowly grow this is good!

Use the web site app as it is much easier to add things.

When you have finished post it next day delivery and signed for. This costs but if they ring to say they have not received it- which has happened to me, you can give them the date and time it arrived there-GOOD LUCK!

[AliRT]

I personally would recommend that you actually go to the Advice Centre if you have one near you and they will essentially fill out the form for you. I can say hand on heart that we were completely honest but these things are so sneakily worded and when you are very dependent on the outcome as most of us are, it gave me a lot of confidence as I was extremely worried about the outcome. I had a job before I got ill this required me to do all sorts of paperwork but I can honestly say I didn't even understand half the questions on the pip paperwork and because of my symptoms, I don't think I would've been able to do it on my own, well I'm absolutelysure I wouldn't.I got the full entitlement.

[AliRT]

oh I also just realised you asked about the panel. Sorry to be replying twice. I've just got interviewed by one nurse. Be prepared it is not a pleasant experience at all and I found it quite humiliating feeling like they were trying to catch me out but it is only an hour or so out of your life. I don't know what your symptoms but attention and memory and concentration are all problems for me, and when we are stressed, would be for most people. I took a friend with me for partly for moral support and partly because she knows me very well so was able to chip in with things to support my case theat I would have forgotten to say. I would advise this if you are able to

[DNE92 Moderator FND Hope UK]

Thanks for your reply. I've heard from people applying because of different disabilities and they too have come away humiliated - a male friend sat crying through his "panel" but because he was wearing a suit he didn't get the benefit! He had a senior job before his mental condition prevented him from working and still can't work so his immediate response to attend a meeting was to wear a suit. But he did get it on appeal. He's still traumatised by the experience and the attitude adopted by these people to mental health - yet we see all these government posters saying "see me - not my illness". None of these people would last 24 hours in our debilitating lives.

Sorry - rant over. Husband displaying "carer fatigue" so feeling ever more of an unwanted freak. . I know it's hard for him to juggle work etc but I spend all day speaking to no-one, DVLA accepting my voluntary surrender of my licence - on the grounds that I had epilepsy and giving me helpful organisations. All despite the fact that I told them that I had non-epileptic seizures. Ho hum. So I can't go for a drive to the beach and take my dogs.

I was out today but my husband just kept complaining that I organised appointments to suit myself and not the kids who are doing their prelims. I had carefully planned the day and times around the kids and had gone in early despite feeling like death on wheels so that he didn't have to take the kids in (a round trip of 50 miles) and then another 25 to come get me. I'd like to go to the movies this Friday as the kids' prelims are over (love the whole experience of the cinema) but he was embarrassed when I had a seizure at the last movie we went to see (and that was ages ago that I can't even remember what we saw) so when I suggested it today he was like let's just go to the pub. I can't drink (medicated against it) as I was having problems with it so not a nice experience and back to FND my Neurologist said no busy places, no noisy places, no strange lighting.

Yesterday evening I asked him if he would just sit outside the bathroom - it's a comfy seat and peaceful and he just said I need me time and didn't even look up when he said it. So I had a shower instead and I've had seizures in there too.

Sorry to be ranting and feeling sorry for myself and especially for people who have to struggle along on their own. Hope I haven't upset anyone - completely unintended.

Cheers

Lou x

[englishmumof2 in reply to DNE92]

Lou I understand... my husband thinks I'm just lazy and a psycho... when I sleep for days he says I don't care about the kids and all I care about is sleep and Avon! Avon is what keeps me sane having a reason to leave the house!! Along with walking my dog!!! When I don't sleep of course I'm grumpy but he snores like a freight train so often I sleep on the sofa!!! I still get up 7am everyday get lunches done and then my eldest ready and run to school. Come back walk dog, then I look at housework , you see everyone just leaves a mess expecting me to clean it up.... when I was very ill for 6 weeks I didn't do barley anything.... the mess just increased.... often I wish I had a lost leg or arm! That way there's evidence not just some imaginary disorder... any how let's find a positive for today... mine is my gardener comes today and my eldest didn't wet his bed for several days in a row!! Yiipppeee no bedding to drag down the stairs...Also 2 teaspoons of coffee made it drinkable today 😜

Have a better day .... signing off loopy Lou (I'm a Lou too !) (of course not a toilet loo but a louisa Lou ) 😱

[DNE92 Moderator FND Hope UK in reply to englishmumof2]

Thanks. Funny old world. Sometimes I still use Loopy Lou too. Now Nutty Lou but I knicked that from Googglebox as a term of endearment. Today is bed day. Done housework. Watched a programme I recorded from yesterday and now off to bed to try to sleep to stop feeling nassau.

Nutty Lou

[englishmumof2 in reply to DNE92]

I'm resting on sofa as fell this morning!!

[Hidden in reply to DNE92]

Hi louyse, your rant sounds like me accept my daughter has married and young family so I can't see them as they cause me seizures, like you I tried to watch a film, I'd seen it before and it was a good one, I desperately wanted to see the end and ended up in a massive seizure ( this was at home as housebound due to everything really) the nuerologist nurses when they would see me said I can only watch ten minutes of film at a time. Not much point. No one professional will see me now as am too complex and severe, am waiting to to be assessed yet again in London, by the time we have got there I'm in a seizure totally out of it but have now got to do it all again if I want some help. My partner has just had 3 teeth out and stitches, tried to work but now home snapping at me cause he's in pain and gone to bed. He rarely will take me anywhere as he hates seeing me in pain so just left at home on my own in pain. Had to give up driving 2 years ago through sciatica then downhill all the way til diagnosed last October by professor Edwards with FND, still waiting to see if I fit the criteria they have for help. I used to take my dogs out everyday for miles, drive where I wanted to go and when, see family and few friends. I feel sorry for me and you and all of us with this soul destroying illness. Totally understand where your coming from. Great big hugs for all your effort you've made. Should be proud of yourself for not giving up and still trying. That sounds great to me. Best wishes. Lisa-Anne. 🤗🤗🤗🤗🤗🤗🤗

[kjkla85 in reply to DNE92]

Bless you a bit late but thought I'd send you a hug x I feel your pain with DVLA they keep sending me stuff about epilepsy despite my explaining it's not! They even have a section on their website about dissociative seizures recommending 3 or 6 months off of driving with a professional opinion but they keep telling me 12. So annoying. Seeing neurologist in a couple of weeks so hoping she will help. I'm struggling this week - tends to be worse just before that time of the month so no idea what that's all about. Good luck with pip. I've just sent my esa one x

[Kazandoz in reply to kjkla85]

Hi there - just thought I would pop in here, as I too always feel worse during time of the month.

I started researching it, and came across some info from proff Jon Stone (the guy who wrote neurosymptoms. org website, and works out of scotland). There is a really good youtube video (quite long but lotsa info) - google 'Professor Mark Edwards patient meeting for Functional Neurological Disorder' where he spoke to a group of people from the FND hope community, and this question of periods and worsening symptoms came up. He has noticed in his research that it was a common theme amongst us ladies, and the only conclusion he had come to so far was that any extra pressure on the bodies energy or systems would make symptoms worse, and that menstruation could just be another of these extra 'stressors'.

Kind of makes sense to me!

There was lots of useful discussion on dissociative seizures too.

karen x

[kjkla85 in reply to Kazandoz]

Thanks for that Karen I will check it out

[davlyn]

hi there Luoyse there is a web site that gives you guidance with the points system its "benefits and work", I found it very useful, are you mobile ? do you use a wheelchair ?,I have a lot of difficulty getting around outside and have to use a wheelchair so when I went to the assessment (or the panel as you refer to it) it was just the one person it wasn't 2 or 3 people, I was in my wheelchair and didn't get out of it and the assessor didn't ask me to as I was clearly having difficulty. when it comes to the form only put in all the bad things don't tell them about good days just tell then about the bad times it does work on the amount of points that you get per activity and if you are able to wash dress use the bathroom , toilet etc then it it unlikely that you will get the personal care, you see I am able to wash dress and use the toilet I just have difficulty getting there, I got awarded the mobility component and was able to get a motability car as the rules for motabilty have changed and you only need a year to qualify check out the motabilty web site if you are interested. anyway do check benefits and work web site I hope you have success.

Dave

[DNE92 Moderator FND Hope UK in reply to davlyn]

Thanks. The whole benefits system just seems to be stacked up against you when you have an illness where seizures come out of the blue, caused you multiple injuries and oh the constant nassau.

[Hidden in reply to davlyn]

Hi Dave, I've got mobility award, do you have to be able to drive yourself to get a car or can partner drive for me , as have seizures am unable to drive, Lisa-anne 🚙

[davlyn in reply to Hidden]

Hi, you can get a car even if you don't drive, its for your benefit. I have one and my wife drives it for me as the seizures mean its not safe for me to. just give Mobility a ring they are very helpful and can talk you through the process. Good luck. Dave

[Hidden in reply to davlyn]

Thank you Dave as my partner car leaves me in agony as too low and my own car is really expensive too run although comfortable to sit in. I have 2 trips to London hospital coming up and even the thought of the pain just to get there is scaring me. Am hoping my partner will help do this as unable to do it on my own. Thank you again for your help. Lisa 😊

[rjoneslaw]

what is PIP?

[cocoferraro]

THE FORM IS REALLY GRUELING, BUT PLEASE BE HONEST AND TELL THE STORY LIKE IT IS, THEY WILL VISIT YOU TO SEE FOR THEMSELVES, VERY NICE PEOPLE. GOOD LUCK.

[hjane]

Hi , I went through this process last summer , followed by a tribunal in January as I appealed . Yes get an appt with Citizen advice to go over your answers before completing form . Include letters from consultants on how your condition affects you . Ask your GP to also write a letter about how it affects you . Photocopy everything and send recorded delivery . When the assessment comes , have someone with you ...that was my big mistake as there was no mention of an attack I had during the assessment and it was my word against theirs . In their words " why would our assessor lie" as soon as assessment is done within a few weeks write for a copy of the assessors report so if you have to go for reconsideration you have that to work against . In my appeal paperwork I highlighted the pip criteria for each part and provided evidence as to why I should get the points . In the appeal I had 3 people on the panel , a judge , Dr and lay person who definitely knew her stuff on my condition . I also took a person , who actually wasn't allowed to speak . It was a very draining and emotionally awful experience . I really had to prove that it effected me significantly for majority of time and on the day I certainly wasn't well at all . I won my appeal . I really think it depends on the initial assessor and ultimately the appeal panel as I've heard different stories about other peoples experience . Just remember lots of medical evidence as they can't argue against that !