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Hi, I was meant to send back my PIP short review form last Friday. I sent it back yesterday and received a text today saying they have it. So it’s 4 days late. I went to the hospital on Monday and had my Dr write something for me and finished it off in last couple of days. I have CFS and really struggle with the forms and need help to complete.
My question is do I need to let them know it’s 4 days late and give an explanation? Or shall I just lie low and hope they don’t say anything. Obviously I don’t want to draw attention to it if I’m going to get in trouble. But I also want to head off any issues if they are going to be annoyed.
Any thoughts would be much appreciated.
Thank you

Hi everyone feeling a little deflated,

Had my PIP hearing today, long story short i've had a lot of issues with DWP ranging over the years multiple service failures, I am a mum to a child with Level 3 Autism, non verbal/ Speech Language and Communication Needs, ADHD, PICA, AFRID, Sensory Processing Disorder, Global Developmental Delay.

I have Fibromyalgia, Anxiety Disorder, Panic Disorder, Chronic Fatigue Syndrome, Depression, Joint Dysfunction, Clicky Hips, PCOS, IBS.

So I was called Wednesday and the clerk asked if the hearing could be heard at 2pm would it be ok and she would let me know on the morning, I agreed so long as she would let me know in the morning (this morning) Come 12pm I heard nothing so emailed for confirmation, around 1.45 she emailed me to say she would only know when they got back off lunch at 2pm, I said this I no good to me as its caused me anxiety and it was agreed I would be told in the morning and to please leave the hearing for 3pm, anyway rather than replying to me she rang me 3 times on the 3rd time I answered and was really overwhelmed by it., she was unpleasant to say the least, but I asked kindly to leave it at 3pm now as its caused heightened anxiety.


3pm arrives and Tribunal starts, I was questioned on my Carers Allowance which I have been in receipt of years before my conditions have effected me so much it effects my day to day living that I decided to claim PIP (2022) during these years I have had family issues meaning I have had to move due to harassment, issues with my sons care within school settings and EHCP fights. I have nothing left to give.


So the judge took me back a bit when he said 'it sounds to me like you do the same amount of caring as any parent does for any child'. This made me feel really sad that he didn't understand or even ask the extent of my sons disabilities, and I explained to him I care for my son within the scope of my abilities, to the best of my abilities and that my sons needs come above my own which is probably why I am so significantly effected by my conditions. Actually no, it's a fact that I am as this is what my neuropsychiatrist said I am in constant deficit because of my lifestyle.

My partner said the tribunal sounded like an interrogation and I told them I felt the DWP/PIP were a bit backhanded at including being entitled to carers allowance because this gets deducted off my UC anyway so it doesn't mean I am better of claiming it and that because of the service issues i've endured with DWP I have recently put in a formal written complaint, that if it mattered that much I wouldn't claim it because it gets deducted off UC and everything is just a farce, ( I know this as we were wrongly informed by UC to claim Carers Allowance for me, for my partner, to be eligible for the carer element and this is not true) it has taken Carers Allowance over a year to sort out the 'cancellation' and in the meantime they misinformed UC that they made payments to us which they didn't, this was finally rectified last week, having been raised in April.

I digress, I told the Tribunal judge that I felt it was backhanded, and that I care for my son within the scope of my abilities and that care consists of ensuring his safety, welfare, support, encouragement and I am his main communication partner as he is non-verbal.

I also explained I find it very difficult to explain my difficulties because my life has very much been driven by my sons disabilities and explaining them and that because I have suffered significantly for so long with my disabilities and the gradual lifestyle adaptations that have been made I consider my life 'normal' when it is not.

So my reason for appealing tribunal was the fact I don't eat during the day and must be prompted to eat, my conditions make me feel nauseous and I have no energy to make food, my mum and partner check in multiple times a day to see if I have eaten and try to encourage me to eat, but my partner makes the main meal, if I were able to eat on a good day which is like once a fortnight like have to motivation and energy then it would be something like a pot noodle or frozen jacket in the microwave. They questioned my sons eating which I told them he has AFRID and eats things that do not take much if any preparation ; rice cakes, bread stick, cheese twists, crisps, choc bars, billy bear meat, corned beef, Peppa yoghurts. the only thing he eats on an evening is microwave pasta ( bachelor n sauce).

At the time of my assessment I was completely overwhelmed by life, struggling every day and couldn't remember the day/week/month and had no awareness of time (yes I was that bad) so much so I didn't even realise the GP had referred me to the neuropsychiatrist for CFS and though that my extreme fatigue was a part of my Fibromyalgia which I had then recently been diagnosed with after suffering for around 1.5-2 years. So I informed them I felt that at the assessment they didn't consider my fatigue and actually within the report it stated fatigue unlikely when the GP report provided to Capita stated probable CFS, referral to CFS. Again I didn't realise this as I struggled to function and each day rolled into one.

I was asked about driving as I advised it makes me tired, which it does and that I suffer with anxiety when driving and just want to get home, I avoid going out anywhere, whenever possible because of my anxiety and panic disorder because my panic attacks feel like heart attacks.

My CFS and Fibromyalgia mean anything I do can make me exhausted and tremor/shake and make me feel nauseous. I lean on everything I can walking around the house for support and sometimes just a 'normal' day at home doing the minimal can leave me so exhausted and tired I feel like I will pass out asleep, if I get to this stage I call my partner who now works part time self employed and he will come home, I try my best to function until he comes home then immediately go to bed when he gets back.

I don't know how to feel to be honest, I guess i'm just expressing I feel judged? let down? misunderstood? I have been failed by my previous GP who was rude to my disabled son and made him sick in the waiting area because she made him separate from me, when my mum was with me for support. I have reached out to CBT and was advised I could join their biweekly group, I have social anxiety so this is a big no for me because it leads to panic attacks.

I moved 4 years ago due to family issues and a family member trying to basically make me crash into them, family feud between my dad and his and he saw me driving and took it upon himself to overtake me and slam his breaks on when I decided to leave the dual track at the first opportunity even though I needed to continue on he put his arms out the window and stuck his fingers up at me, then after that the harassment got so bad the police got involved even though they said it was a civil matter, because of my disabled son and I was effectively a lone carer as my partner was working full time away, and told them they did one more thing to me the police would take them to court. Anyway we moved and cut off my family who found out I moved and tried another family member to get out of me where I moved to but I refused and called them out ,but I still struggle with the possibility of confrontation and harassment. this is why the 3 phone call thing felt a lot to me and why I struggle in social places so I don't go out, I have to be forced out by my partner and even then it turns into anxiety and panic attack as I can't drive because I know of the possibility.

Just like I know the risk of me fainting when I get too hot. I need a hot bath for my body but I get up get dizzy and slip, fall and can faint so have to be helped in the bath and supervised. I have suffered with syncopes since 2011 intermittently but know when one is coming but sometimes its too late for me to do anything and results in me just hitting the deck, last year I missed my bed frame and the desk beside it, landing gracefully (not-so) on my face right in-between them both.

I just feel I have so many difficulties and try my hardest at life itself and everything's such a fight.

Even my elderly neighbours (i'm 31) who are mid to late 60's come round if they haven't seen me leave the house for a few days/week and they have mobility problems, but also have a son with additional needs who is now independent so are totally understanding.

I dunno, I guess I feel that even at tribunal they were making scenarios up that simply don't exist or happen in my day to day life, and I did answer saying thats not part of my day to day life so I don't know.

Questioning me about a holiday because I took a period delay tablet, I go away with my parents and partner who support me and my son asking about entertainment clubs on holiday and swimming pools. Like yes there are both of those facilities there but we don't use entertainment I couldn't bear it and my son hates noise he's over and under sensitive to it and I will go swimming because it helps my body pains and aches but even then if I get overwhelmed my dad will come and meet me and take me back (as he doesn't like the water) we are trying to teach my disabled son to swim (my partner and mum) and he struggles to be separated from me, I just feel like no one gets it? i'm trying my hardest and best I can and everything feels like its being used against me.

Im pushing through and i've been told I shouldn't, but i'm left no other choice, ive asked for help and been denied it so what should I do?

I have a family support worker coming tomorrow as I filed a complaint AGAIN to my local authority for a S17 assessment, last assessment I had in 2018/2019 it was; i'm a good parent and we don't fund services anymore which is total rubbish ( I didn't know that then), but again couldn't fight it.

My life feels like a loosing battle. I would love a career, a hobby and to feel happy again. All of these failures and lack of understanding is just driving me to the brink. Ive had 3 breakdowns this month and questioned why do I bother with life? I push through it because I have a son who needs me. But I also need help.

Hi
I’ve just had a PIP assessment and was quizzed about how often my partner visits/ how long for.

I receive the ESA Severe Disability Premium as I have standard PIP and do not ‘live with’ my partner who lives a few hours away..(citizens advice helped me apply for this 6 years ago). But over the years he has stayed for longer periods.
Like my health condition this is a fluctuating situation as he stays for blocks of time, for less than half the time in a year but often for runs of many weeks, up to a few months in the summer sometimes. I’m now panicking because so far this year for various reasons (including a particularly bad period of health for me) he’s stayed for two very long blocks amounting to about 19 weeks, but by year’s end it will still most likely be just less than half. During the phone assessment I couldn’t think straight as it was towards the end and I mumbled about ‘a few weeks’ for his most recent stay - I couldn’t face the complications of a long explanation as I was exhausted by then (I have CFS). I added that his visits are in blocks of weeks but mostly unpredictable, and amount to less than half the time a year. (Last year he stayed for about 22 weeks in total). The only predictability is that he’s never here over winter (usually 3 or 4 months). Another complication is that he owns the house I live in and technically I’m a tenant paying a peppercorn rent although we are now civil partners., But our finances and daily decisions have always been completely separate. I pay all the bills here and always have. Likewise him where he lives.

Two things I’m freaking about:

1), could I be accused of some kind of fraud after not giving the correct info today? I’ve asked DWP in the past what the rules are and I’ve researched but all I’ve been told is ‘if he lived here for several nights a week for example we might have to investigate’. What does that even mean?!
2) If they remove the premium, can they backdate it and demand a huge amount in arrears? My last review was years ago (this one has been 18 months overdue).

Should I write to DWP and tell them how long he’s actually stayed for so far this year and projection to the end of the year, or just wait and see what happens? I can cope with losing the premium going forward, but not with being prosecuted for misleading info when I’m knackered and there are no clear guidelines anyway. (At least there won’t be room for me in jail!!)
Argh!

Hello,

I would be grateful for some help on this question for PIP. I am totally housebound with Long Covid (ME/CFS and POTS). I only leave my hone on extremely rare occasions for medical appointments where I am taken by my carer or sister. I understand that this question is not about your physical ability to plan and follow a journey. So this is where I am confused how to answer this question. I am never in the situation where i am planning and following journeys as that is way beyond my capability as I am totally limited physically and I cannot be in overly stimulating environments but primarily I don't leave my home because physically I cannot. So am I supposed to answer this in the hypothetical that if I wasn't limited physically would I still be able to do this?

Any advice would be much appreciated!
Cheers,
Heidi