I Won My PIP Appeal. Here’s 12 Things You Should Know About Appealing

I write this post with so much credit and thanks to Bill at Rope & Roses. He is a dearly valued friend of mine and has been an amazing source of endless support through this challenging time. If you haven’t already, please do pay him a visit and a like!

If you’ve been following my blog lately, you’ll know that today, I’ve been in court. I made the decision to appeal the decision to refuse me Personal Independence Payment, and to be honest, in a way I’m glad that I did. Because of my chronic pain, ataxia and anxiety, I have been awarded Enhanced Rate Daily Living and Enhanced Mobility for the next 5 years, starting November 2018. I’m not going to tell you what descriptors I picked and what to say to win them (that would be fraud), but I am going to give you 8 pointers regarding the whole process, an the appeal process. So here goes:

1.Your Mandatory Reconsideration will almost definitely be refused, but don’t give up

When you get a decision from the Department for Works & Pensions regarding their decision, you will almost definitely be refused. If you request a Mandatory Reconsideration, it will still almost definitely be partially or completely refused again. This is pretty normal, so try not to lose faith. You haven’t lost, you’ve just been refused by someone who is probably very rushed and has little or no medical knowledge or experience to go by.

It’s important not to give up, just because you have been refused. While only 20% of decisions are overturned at Mandatory Reconsideration, more than 75% are overturned at appeal. In fact, the current figure my representative gave me was as high as 90%!

2. Expect to be waiting months for an appeal date

I appealed my Personal Independence Payment decision in January 2019, I didn’t get a tribunal hearing date until September 2019 – that’s 9 months of agonizing and waiting. Some people have had to wait a year or more! It is stressful, but try to remember that a lot of people are where you are.

3. Seek representation

Having a representative assess your case prior to your hearing is invaluable, I went from pursuing 8 points for Daily Living only on my own assessments, to being awarded 12 points for Daily Living and 14 points for Mobility, based on my representative’s written submission. On the day, they are also a great source of emotional support.

4. Think outside the medical box

Medical evidence is vital, but so is a lot else. If you’ve had support from social services, be sure to mention and include that. If you’ve been targeted because of your disabilities, written reports can support your claims of fear of going out alone, also. if you have a representative, run any evidence past them first.

5. On the day, your hearing may be in a court building but you are NOT on trial

Confession time: I had a panic attack outside the court building. I got hysterical about my day in court when my only crime is being disabled. When we went in, the court room had a bench with chairs and microphones, and on the other side of the divider was the panel with a doctor, a disability expert and a judge. The panel will do all they can to put you at ease. In fact, the judge even came down to introduce herself to me before my hearing, which really helped. It’s important to understand that your hearing might be in a court, but you yourself are not in trouble. The panel have to be impartial but they are not part of the DWP. If anything, they are even slightly on your side because they know a lot of people have been unfairly rejected, so this is your chance to explain to them why they should agree with you, using the descriptors and examples.

6 The hearing centre might not be disabled-friendly

I requested a ground floor room as lifts make me very anxious and stairs cause me great levels of pain. On the day, my hearing was held in a room on the first floor. We asked if it could be bought downstairs, but there were no rooms available. The only choice was for me to gather more evidence and have a telephone hearing, travel somewhere with a ground floor room (about an hour drive away, for someone who gets anxious in cars!) or push on regardless. It took me a lot longer to get up the stairs, but I decided to grab the handrail and push on with the support of my husband, my mother and my representative. Unless you really, really can’t use lifts or stairs, it may be better for you to push on if you don’t want your hearing adjourned.

7. You may have to go through security

Security will do all they can to put you at ease, but you may have to deal with them. At Bristol Magistrate’s Court, You need to put your belongings in a box and walk through a scanner, then be scanned with a metal detector. It can make you a little anxious, but it’s important to understand that it is protocol for everyone’s security – including your own.

8. Be honest and don’t exaggerate

Be honest with the panel, but don’t exaggerate. If you only do something once per week because you don’t have help available on all of the other times, it is better to tell the panel that than to tell them that you do something every day, but only with help. It isn’t only about the help you have, its also about the help you need but don’t have. If you start the “everyday is a bad day” dialogue, you’re likely to raise a few eyebrows. If you give a truthful estimate of what you can and can’t do rather than trying to give the best answers for more points then the panel will be more sympathetic with your case. Remember, you aren’t dealing with novices, these people are experts in law and they will see right through you.

9. Be prepared

I know, you’re probably panicking about the process now – I’m sorry, but please don’t. You need to be aware of the panel. They aren’t trying to trip you up, they just want to get the full picture of what help you need, and how much. If you can do something with one hand but not the other, be prepared to answer that question. If you can only do something slowly or awkwardly, be ready for that, too. Also, be ready for some very strange questions! The doctor on my panel asked how far I could walk, then asked me to convert that into buses to make sure I really knew how far my walking distance was. Buses and cricket pitches suddenly become acceptable units of measurement in these tribunals!

10. Don’t go alone

If you’re arguing that you have anxiety interacting with other people, make sure you take someone with you or even better, a representative. Turning up without support suggests that you don’t need help with interacting and the panel will dismiss it. I lost points for requiring social support because I was able to address the panel in a friendly, articulate manner, even though I’d stated throughout my appeal that I needed support with interacting because of my anxiety. Even if you do take support, you may not get the points you think you should get. I was awarded as needing prompting, rather than support, which is a mark down.

11. The judges aren’t as scary as you think!

When we hear “judge”, we (or at least, my mother did!) immediately imagine judges with robes and horsehair wigs. This isn’t the case! Remember, this isn’t a criminal court, and you aren’t on trial. You will address the judge as Ms/Mr/Mrs, not “your honour” and they will wear smart office clothes or a suit, not a robe.

12. It’s okay to get upset

Talking about disabilities can bring up a range of emotions like shame, anger and depression. The panel are more than used to seeing people experience negative emotions and they will allow you to have a cry or take a break if you need to. Be respectful to the panel, and they will be respectful to you.

13. Even if you win, you won’t win straight away

When you’re told that you are entitled to PIP, it’s easy to think in terms of winning, and you might feel jubilant or like celebrating afterwards. The thing is, a successful appeal does not open up a secret door to government money right away. You will need to wait about two to four weeks for your payments to begin and for back payments to be sorted.

14. You might not even feel happy afterwards, anyway

One of the things I mentioned to Bill after winning my award was the feeling I felt inside. I’d won, but I didn’t feel like I’ve won. I’ve been told, basically, that I’m fit and healthy and there is nothing wrong with me for a year now, even though I knew otherwise. I don’t feel like I’ve been supported by our government, because if anything, I haven’t been. I didn’t go through brain scans, electromygraphies and uroflowmetry tests for nothing.

The system makes you feel like you’re a normal person living a lie. Before my hearing, I even worried about blurting out that I was making it all up, even though I have my diagnoses, because that’s how this process makes you feel. You have to jump through so many hoops to get the benefit that you’re entitled to that it starts to feel like not winning at all. I know it will take me time to adjust, Bill has told me as much. It probably doesn’t help that winter months are now upon us, too.

I hope that this guide will help you if you too are going through this process. Even if you aren’t or you know someone who is, I hope that these pointers informative for you. If you have a disability and an interest in BDSM, of course, do hit that ‘subscribe’ button down below to let’s keep in touch!

Hugs & kinky cuddles.

Elena xx

One thought on “I Won My PIP Appeal. Here’s 12 Things You Should Know About Appealing

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  1. As I describe it the Pointless Interrogation Procedure devised by the Department Work And Pensions UK and private contract to allow disabled people to eat and interact with the rest of society certainly does not provide Personal (its inhumane) Independence, (You have to jump through hoops of fire and pain to get it), and to call it a Payment.. Well, ooh how nice I’m being paid to breath & live..

    A few tips for any readers who may venture onto the excellent post above


    These notes and links are for guidance only. Always seek proper advice when filling in claims or contacting departments:)

    DLA and Benefits UK only.. Also see Doc Excerpt From the Risibility Handbook.I’ve compiled some useful links specific do DLA and benefits for those in the UK. The Government is has proposed changes to benefits replacing DLA with PIP’s Personal Independence Payments.. Time will tell on how much these changes affects us.

    Stating mental issues such as stress, or loss of work, partners stress etc etc. may earn you points for DLA claims. Its hard to go through those ‘worst days’ if your feeling good but if they’re gonna come round again THATs when you need that extra bit of help.:) or renal or local council social workers are there to help, and sometimes Citizens Advice Bureau can be valuable:) Do NOT rely on one source.

    Note, NEW PIP replaced DLA on 8th April 2013 for those age 16 – 64.

    And from Benefits and Work:


    The PIP Points System


    The PIP SELF TEST from Benefits and Work


    MIND the Big Book of Mental Health and Benefits.

    Invaluable. Benefits and forms explained with letter & form examples.

    Supported by MIND


    There used to be a concessionary price available via the MIND website but this is no longer the case

    Benefits and Work UK

    Private organisation/support group that provides VERY useful info. Subscription for forum and document downloads (which can be kept) Worth the subscription.. In my opinion. JW


    Age UK formerly Age Concern


    Disability Rights UK – Publishers of the Disability Rights Handbook:


    CAB for details of your local Citizens Advice Bureau see


    Carers UK


    4UP – http://www.4up.org.uk

    A voluntary organisation to help with claims and appeals of all kinds, including files on draft letters, how to obtain copies of your personal information and much more, lists of direct contact numbers and much much more
    Mostly facebook based on a closed, moderated group.


    Another generic support group includes a useful grants search:

    Youreable – an online support forum with active threads on benefits and support.


    The Disability Handbook Ref used by professionals to make decisions.


    Gov info on DLA and benefits


    Gov link to the Disability Handbook This document is used as a framework on DLA applications and states scientific facts of treatment only. It does not describe any patient experiences, emotions etc.


    Direct Payments also known as Personal Budget

    As opposed to Central Government benefits such as Disability Living Allowance, Income Support and Attendance Allowance which come from the Government Department of Work and Pensions, Direct Payments come from your Local Authority. (Local Council)Direct Payments can be used for a number of things as agreed with social services, such as employing a PA/cleaner, or to pay for an agency worker.You should contact your local Social Services to be assessed for Direct Payments. Non Means tested (does not, legally affect means tested benefits.


    Working Tax Credit:


    Note, I am not a social worker, nor do I work for the any organisation, all info and resources are compiled from my experiences when claiming DLA, ESA, Income Support and dealing with the many many forms over the 37 years of being a kidney patient.

    NOTES on Form Filling and Applications.

    Work on a draft and keep a copy.

    Consider a laymans letter or summary of your medical conditions. If you can understand it, they can.

    For example, an assessor may not understand a medical summary from the hospital, but a detailed list stating in plain english is a lot easier for them to understand.

    For example

    1st procedure July 2015
    2nd event sep 2016

    Replace with
    Theres no harm in adding simple things like dates attended university (to show you have lived a life) IF you have a long medical history:)

    As with all correspondence. Keep a copy. Its a good idea to draft on a ‘spare copy’ which you then use as a template for the final form to submit to DWP. You then have reference for when you go to tribunal. Or if you have to renew your claim.

    On each copy of ‘supporting evidence’ write your name and NI number for reference, and if referring to them in applications use A B C or 1 2 3 on the form.

    While some manage to fill in the PIP, and other forms alone, and receive successful applications, it does not do any harm to seek advice or read the resources & tips provided here.

    Copy and mark the date on letters received. Record times of phonecalls.

    While some manage to fill in the ESA, PIP, and other forms alone, and receive successful applications, it does not do any harm to seek advice or read the resources & tips provided here.

    I’ve personally experienced a cat and mouse game sending me from the jobcentre for interviews to DWP callback while my benefit was held. If this happens it IS time to get external help and support.


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