PIP Telephone Tribunal Hearing

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 Gary,

Thank you,

I have checked online on my PIP appeal progress and the result is uploaded there and they have kept my award the same.

I feel that because I don't have professional input or referrals etc, like I am not believed.

My award ends in April and I am due to be contacted by the end of August in regards to my circumstances.

I will ask for the WSOR so it allows me to see how they came to the decision.

I will be contacting the GP on Monday as I still haven't heard anything from referrals made almost 2 years ago. I send in online queries and medical advice or appointment requests and don't get anything back.

I have a family support worker who is currently assessing me as my sons carer for a S17, I have ended my carers allowance as this gets deducted off UC anyway having seen the outcome go tribunal but still have my carer element on UC because I genuinely feel this is what has stopped me getting enhanced rate, I try to the best of my abilities to care for my disabled son, his lack of sleep impacts upon me as my partner works so I am constantly in deficit.

I'll be approaching my review with more support and evidence, I fight for everything (3 tribunals in 3 years for my sons EHCP, he's been neglected by caregivers so when he is not with me I get severe anxiety and panic attacks)

Hopefully by my review I will have enough evidence to show how my conditions effect me by means of other professional statements and input.

I struggle with information and my memory is absolutely rubbish for dates and diagnoses and referrals, I have to have everything written down for me, I struggle with no sense of control with my anxiety and this peaks my anxiety which becomes a panic attack.

I have access to all of B&W information now but only of recent, wish I had it before even starting my PIP claim.

Hi Gary,

Sorry at the point of writing I didn't realise I could check online through the PIP appeal progress which shows an uploaded document and the result of the hearing.

Which was 'appeal refused' and my award maintained.

I appealed late almost 13 months due to going through other tribunals, stress is a major factor in all my conditions and im sick of appealing and fighting everything.

My award is due to end in April 2025 and on my notice it says 'we will also contact you while you are getting PIP to see if your needs have changed and to look at the amount you get. This will be August 24 August 2024'.

Will this still happen because the Tribunal have refused the appeal? i'm not sure what happens next, I just don't feel its worth fighting it and just being better prepared for my review.

thank you for the information I will have a look into that, I appreciate your time and response.

C x

I asked for a statement of reasons, which came today, to say i'm disappointed would be an understatement, they have used the fact I have a disabled son against me and not considered the direct impact this has upon me, are basically saying that my 'creditability generally' and ' medical evidence didn't support the high level of disability claimed'

I just feel like i'm not believed at all, even my partner is in disbelief.

It says I have a tendency to overstate my difficulties, how can I do that? I simply described my difficulties and they have chosen not to believe me because I have a disabled son is how I feel.

On one hand I want to fight this because its morally wrong, on the other I don't have the energy, but now i'm thinking this will effect my pip renewal?

I knew they were going to say this as I was asked , what I felt was irrelevant questions and the judge made a comment about me describing my son's care as being 'the same as other parents'.

My tribunal was already ruined before it began with them messing me around with times and set my anxiety off and made me really upset, they called me 3 times one after the other and I had a go at her and told her she's caused me significant distress as if you tell me something that's what I expect, she said they would let me know in the morning if the hearing could be heard earlier not 10 mins before, so I told her to keep the normal time as I needed that time to settle.

Sick of fighting everything. I have been signed off sick by my GP for UC, due to stress and referred to a family coach, I have got X-rays for my hips soon, I have started to loose grip and get pains in my hands more often recently over the past 3/4 months and tremors and shakes are worse, but I just feel there is no help and people keep passing the book. And after getting this statement of reasons feel like what's the point they won't believe me just because of my age! and having a disabled son.

I have self referred and had an assessment by a family support worker, a referral to adult social care services and children with disabilities.

My family support worker put in a recent assessment -

R is the main carer for C and will put C needs above her own which can have a negative impact on her own physical and mental health conditions.
C is currently not attending school therefore R is caring for C all day every day. R reports Cm is out of the house working usually Monday to Friday between 07:30 - 08:30 and 17:30 - 18:30/19:00.
During the times I have met with R (and C) I have met them in the family home. During one visit I
became aware that R looked uncomfortable. When I asked R about this she explained she was in pain, I advised R if she needed to get up and move around during our session then this needs to happen.

Because I rub my legs/thighs hips to massage them because of the pain and this is normal for me to do, I do it all the time to try and help alleviate the pain and she pointed it out to me.

She also told me I am entitled to carers allowance as the care I do is sufficient enough to keep him safe and well. ( my household is always on lockdown and I have to carry keys on me at al times)

Please could you point me in the right direction with what to do? I feel like giving up completely.