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Nil points

Hart86Hart86 Posts: 360Member Pioneering
edited October 23 in Guest blogs

Sophia shares her journey applying and being reassessed for disability benefits and how she thinks it might have been different with more support.

To explain my experience of Personal Independence Payment (PIP) I’d need to tell you a little about myself. Although I have some other invisible impairments, my claim for PIP was on the grounds of mental health. Bad mental health has been part of my life for as long as I can remember, from CPTSD, to depression and social anxiety, with self-harming and suicidal tendencies thrown into the mix. I’d struggled through most of my childhood and at just 19 I had what I’m now told was a breakdown.

Returning from work one evening, I was only a road away from home when I just stopped, sat down on the pavement and cried. I often think back to that time and try and remember what triggered it, but I really can’t think of anything. I just sat crying. For hours. I just couldn’t bring myself to cross the road and it took a group of drunk students walking past in the wee hours for me to snap out of it long enough to sprint home and lock myself safely in my bedroom. From that day, leaving the house got harder and harder until just a few weeks later, I stopped going out at all.

More than a year on, with the help of a support worker, I applied for and was awarded DLA. My initial transition to PIP was uneventful and paper based too.

It was only when I had to renew a few years down the line that the trouble started. By then it had been years since I’d left the house at all. I even gave birth to my daughter at home on the floor. With post-natal depression now part of my mental health cocktail, by the time my assessment came around I was in a pretty bad way.

It’s difficult to explain how hard it is for me to have people inside my home. It’s the only place I feel safe and after years of never leaving it, the idea of opening the door to anyone fills me with a dread I can’t put into words. At that point, I was in such a bad place I needed prompting to do even basic things. It hurts to admit it, but weeks would go by without me even thinking to change my clothes, let alone wash my hair. I’d had a re-assessment for ESA a while before and although the process was triggering and horrendous, the lady who came was patient and lovely and I just about got through it. That knowledge didn’t make me dread the upcoming PIP assessment any less.

Curtains partially drawn across a window with a plant on the windowsill.

I won’t go into detail, but as someone with social anxiety and a fear of letting people into my home, the weeks leading up to my assessment were extremely difficult. Sitting with a complete stranger at my table, as they nonchalantly asked things like, ‘how often do you think about killing yourself?’ and throwing in random questions like ‘can you spell WORLD backwards?’ was confusing and nearly broke me. I tried to explain what life was like for me, how just a few weeks previous when the smoke alarm was going off in the downstairs flat and smoke billowed up the stairs I’d just sat in my bedroom and cried and that even the siren of a fire engine and banging on my front door hadn’t convinced me to go outside. How if it wasn’t for my long-suffering partner’s prompting, I wouldn’t even bathe or eat. That on a bad day, I couldn’t even have the curtains open, let alone a window. None of it seemed to register, the gentleman kept on asking things like:

How often do you take your child to the park?

Where do you go shopping?

When did you last meet up with friends?

Even my usually placid partner started to get irritated as it was clear the assessor wasn’t listening. I didn’t shop. The rare occasion I dressed, I did so in the clothes I’d had since I was a teenager. My partner bought the food shopping and did park trips and I’d lost all contact with friends as even the phone ringing sent me into a panic attack.

A couple of weeks later I found out I’d been awarded zero points. Nothing. It was as if my struggles weren’t relevant. I felt worthless. I briefly looked into appealing the decision, but the stress was just too much. I wouldn’t have made it to a tribunal and wasn’t aware that I had other options, so I just gave up. A few months later I received my ESA renewal and the thought of going through another assessment had me binning the forms, so that stopped too.

While my overall mental health has started to improve, the loss of PIP kept me trapped inside for longer. I could no longer afford to pay for the private therapist (the only way I could get one to come to the house) and the aids that had started to help were gone quickly too.

I’m not sharing my story to scare anyone. Statistically most people are awarded without problem, but back then I was too scared and too ill-informed to fight for what I was entitled to. I strongly believe if I’d been more clued in and had any advice, I might be in a better situation now.

What advice would you give someone facing a PIP assessment? Have you had to fight for what you thought you deserved?

If you're in process of moving from DLA to PIP, applying for PIP, being reassessed or going through an appeal, we have plenty of information and advice to support you on our website, as well as dedicated sections of our community which can be found here.

Replies

  • thespicemanthespiceman Posts: 5,347Community champion Disability Gamechanger
    Hello @Hart86   Thank you for sharing your story. I am sorry to hear what you are going through.

    I know sometimes do talk to you and know that I can myself can identify what you are going through.

    The problems with PIP and the coloration between that and being mental illness are evident . Not ever easy for any one to explain how you are day to day.

    This is something I know myself now coming up to my middle fifties been claiming since early 1990's continuous. 

    I am from a time if I am asked about imitate personal stuff.  About moving my bowels. Sorry is that necessary .  The questioning sorry but that is private is that a question to be asked.

    The lack of empathy the attitude. The demeanour the training and most of all the whole way it is presented needs to be changed.

    The lack of dignity the lack of respect the unprofessionalism and I have seen it all.

    From the early days of Eighties leaving school to be handled, mistreated and way I was.

    As one of my former friends whose Father was an American if that happened to me. Me meekly explaining the assessments. A law suit be on the table in hours.

    How did this happen?. Why is it happening.?  I often twist things around when I am confronted with some of these assessors.

    Yes I had the bad ones, good ones tend to focus on them. Yet the bad ones need to stop and in some cases been told.

    As I twisted it around in one. Mentioned as she started to get my hackles high. The probing then more probing but adding on more questioning.

    Which I had answered.   Very politely but not again and again.

    So I did what she did.  Then she started shouting.  At me.  

    Which saw an assessor flustered angry and annoyed . So I said now you know about how I feel.

    One has to admit the lack of naivety of the assessments the lack of compassion and even understanding. Over basic health questions.

    I have as I have said before addiction history. Question if I drink too much tonight will I be an alcoholic.?

    What a stupid question.   Also lots of it around misinformation and misunderstood health as well.  You have partial deafness you can hear me. Well yes but no.

    You can hear me.  Sorry but that is wrong. I can barely hear you can hear. 

    The problem is a lot of the assessors are not listening not have a clue not have any idea of any one who is either mentally ill or disabled or any conditions.

    I have done assessments with support workers from mental health charities and they are best people to get in to a room with.

    When attending as they say the truth and say to the assessor what they mean .

    Attitudes change as one assessor stated I think he does not need a support worker. To which the wrath of the floating support.

    Commented the following do you have any idea of this man his days his routine. As the two of them arguing about me. 

    That has to be stopped with immediate effect.  

    The only way for assessment is this this like as I said before a court of law.

    You arrive at assessment.  With an advocate waiting for you to represent you at the assessment.

    All medical evidence and video evidence. Including. written witness statements.  From families, friends, Doctors. Any medical professionals .

    When transcribing questions. All typed out verified as in courts signed and any errors . Adjusted re written no lies no mistakes.

    Confirmation of statements.  A true record signed by assessor and all witnesses.

    Copy to assessor copy to claimant.

    That is the way to do assessment not  this debacle. Also in attendance if the person has a  specific illness or condition or disability. Those from the organisations, that have experience and knowledge of the persons disability, condition or illness.

    Can use that to help the assessor to understand the claimant much better.

    The whole descriptors out of the window should be about how the disability, illness and condition effects you not the descriptors at all.

    That is missing the vital point of the assessment is it not.

    The Government are scared because it is obviously costing them a lot of money. To roll out this farce and yet is not helping those who need the help the most.

    I know this myself and so it goes on.  

    I hope if you need to talk or anything I can do. Please ask me only too happy to help.  Be supportive.

    Wish you well.

    Take care.

    @thespiceman







  • Hart86Hart86 Posts: 360Member Pioneering
    It’s really sweet of you to reply, thank you @thespiceman!!
    It wasn’t easy to write as mental health is really misunderstood and I feared being judged, so thank you. ❤️

    Being asked about intimate things is horrible for anyone and although I understand WHY they have to ask, I think sometimes it can be forgotten that we are real people they are asking and mental health isn’t always taken into account. 

    I’m sorry you’ve had some bad experiences with assessments too, they’re not the easiest of experiences for anyone! 

    I really agree with you here:
    ”To roll out this farce and yet is not helping those who need the help the most.”

    I was in such a vulnerable position and really needed the help and support but my condition made it impossible for me to fight for it!! 

    Thank you again for your message. X
  • thespicemanthespiceman Posts: 5,347Community champion Disability Gamechanger
    Hello @Hart86  Thanks very much. For replying back to me.

    This is a part of your life and sharing it is always difficult to explain to every one.

    Your not alone.  I hope this has helped you.

    All of us know who have mental health are always misunderstood but the issues are important and are significant.

    To give you confidence and reassurance.  Your story I am one can identify what you are going through.

    It is also may I add understanding others who like yourself struggling and striving to deal with those hard and sometimes stressful days.

    Every day is different.  Every one is different and how they deal with the mental health they have.

    One aspect of my own issues is education and knowledge .  Learning to deal with every day.

    If I can help or be a listening ear happy to do so.

    Please take care.

    @thespiceman




  • AilsAils Posts: 1,141Community champion Disability Gamechanger
    Hi @Hart86 and thank you for sharing your experience with us.  I'm so sorry to hear you went through such struggles which weren't helped by the way your PIP assessment was dealt with.  It's disgusting the way that some assessors treat people applying for benefits and there needs to be better training for this instead of just treating people inhumanely.  When I was younger and applying for benefits I remember being asked really embarrassing questions and feeling horrible at the time.  Fortunately, my PIP assessment went relatively smoothly and the assessor was a lovely lady who treated me kindly and with dignity.  More of them need to be like her.  Thanks for raising awareness of this important subject which I'm sure will guide other members in a similar situation.  I wish you all the best for the future.  x  :smile:
  • Hart86Hart86 Posts: 360Member Pioneering
    Thank you so much for your reply @Ails! ❤️
    It can definitely be embarrassing to talk about something so personal and I wonder if assessors sometimes forget that, or perhaps they’re embarrassed too so try to rush through? 
  • Hart86Hart86 Posts: 360Member Pioneering
    Tobias said:
    Explains alot!
    What exactly is that supposed to mean?
  • OverlyAnxiousOverlyAnxious Posts: 227Member Pioneering
    Sorry to hear of your experiences with PIP, I can relate to quite a few of your symptoms, particularly around having someone else in the house!  

    Not sure if I missed it in the post but did you eventually get awarded PIP or will you attempt the process again in the future?
  • AilsAils Posts: 1,141Community champion Disability Gamechanger
    You are welcome @Hart86.  Yes, I think there needs to be better training for the assessors.  Thanks again for such an insightful post.  Hope you are well.  x  :-)
  • Hart86Hart86 Posts: 360Member Pioneering
    Unfortunately @OverlyAnxious I just gave up with the disability benefits which I know was stupid but it was the best decision for me at the time. I’m actually in a better position than I was too, I still can’t have anyone in my home (possibly even more so than before) but I can leave it a little more and am working on the rest. 
    I’ve actually read a lot of your posts and can relate so much. I read your description of food prep with my heart in my throat as it’s exactly like me and just reading it made me anxious and I had to go wash my hands 😖 
    How are you getting on with your pip claim? ❤️
  • thespicemanthespiceman Posts: 5,347Community champion Disability Gamechanger
    Hello @Hart86  Please can I ask do you need any guidance with food preparation?

    You mentioned in the post previous.  I know it can be difficult if you have certain problems. OCD or other issues or problems.

    I always will can help with anything.  Have a range of gadget, kitchen equipment that helps me.

    Simple things I do to be safe in the kitchen.

    Happy to share. Just let me know.

    Keep in touch.

    @thespiceman
  • OverlyAnxiousOverlyAnxious Posts: 227Member Pioneering
    Hart86 said:
    Unfortunately @OverlyAnxious I just gave up with the disability benefits which I know was stupid but it was the best decision for me at the time. I’m actually in a better position than I was too, I still can’t have anyone in my home (possibly even more so than before) but I can leave it a little more and am working on the rest. 
    I’ve actually read a lot of your posts and can relate so much. I read your description of food prep with my heart in my throat as it’s exactly like me and just reading it made me anxious and I had to go wash my hands 😖 
    How are you getting on with your pip claim? ❤️
    It seems a shame you gave up on it but I do understand why and I'm glad to read you're in a slightly better position now. :) 

    I'm still waiting for the MR decision myself.  I'm almost certain I'll be one of the ~83% of claimants for which the MR doesn't change the decision though.  So I am trying to prepare for tribunal already, I don't really have the option not to try it but I am absolutely dreading it.  Expect an influx of posts on the subject once I receive the MR decision! :D
  • WaylayWaylay Posts: 875Member Pioneering
    @Hart86 My PIP experience was so much like yours! I have the same mental illnesses as you, although my agoraphobia waxes and wanes, so I get out sometimes. Good luck to you!
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