I write this post with so much credit and thanks to Bill at Rope & Roses. He is a dear 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!
In 2019, I appealed against 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 12 pointers regarding the whole process, and the appeal process. Here we go:
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 at first. 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 figure my representative gave me on the day of my appeal 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 other people are where you are, too.
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 of your appeal, they are also a great source of emotional support if you don't have anyone else to support you.
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 to see if they think it will be useful.
5. The Appeal Process Will Make You Question Yourself
You fill out the medical form when you apply for PIP, attend a face-to-face assessment with a medical professional who doesn't know you and their decision comes back, 0 points. You request a Mandatory Reconsideration from someone who works for the DWP who usually has no or very limited medical background, and it comes back again, 0 points. At this point, it can easily lead you to wonder if there is anything wrong with you at all.
Bill has Chronic Renal Failure and has haemodialysis several times per week, but during his application process, he was suddenly declared as being fit and well. For me, who has hydrocephalus, spina bifida (and I've seen the MRI scans and x-rays that prove it!) and chronic pain, it was decided that there was nothing at all wrong with me, even though I had my husband with me for emotional support - because of my anxiety! When you go through a process like this, it's normal to question yourself and wonder if you've been lied to your whole life. Could I work in an office after all? (Done it before for 8 months, I ended up signed off sick with daily panic attacks). Could I do note taking if I just tried? (I can write about 8 medium-sized words before I have to stop because of pain), do I even need the bath grab rail anymore? (A clear and resounding yes).
Before my hearing, I worried about saying 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 you're not winning at all. I know it will take me time to adjust now that I've won my award, and Bill has told me as much. The most frightening part is that I will need to do it all again in five years.
I really wanted to highlight the impact that appealing can have on your mental health, and by far, questioning yourself is the worst part. Understanding that lots of other people have also been through it (and usually won at appeal!) can really help you feel stronger during the process.
6. 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 and I insisted to the court usher that my only crime is being disabled. When we went in, the court room had a long desk 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 from the appeal form and examples from your own records that show you meet the criteria.
7. 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, which is useless for someone who gets very 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 to help me. 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.
8. 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 anyway. 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. The security staff are generally friendly because they know it's a new and daunting experience for some people.
9. Be Honest And Don't Exaggerate
Be honest with the panel, but don't exaggerate. If you can only do something once per week because you don't have any 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 you need help to do it. 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 are more likely to 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 lies and exaggerations!
10. Be Prepared
I know, you're probably panicking about the process now - I'm sorry, but also please don't. You need to be aware of the panel, but not afraid of them. 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 - so be prepared!
11. 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 completely. 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 to interact, rather than support, which is a mark down on the PIP points system.
12.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.
13. 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.
14. 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.
15. 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. Like I mentioned previously, I was being told for so long that I'm fit and healthy and there is nothing wrong with me, even though I knew otherwise. Despite what disability benefits are there for. I didn't feel like I'd been supported by our government, because if anything, I hadn't been. Instead, I felt like our government were simply calling me a liar, and the judges had now decided that I really was telling the truth.
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.
Good luck with your appeal!
Be Bold, Be Bright, Be Beautiful,
Helen xx
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Thank you for this post. I recently attended a PIP tribunal – I won (just) but what a horrible ordeal! It’s a battle but we are not alone.
Yay! I’m so glad you won. I agree it’s a horrific experience to go through, especially if you’ve never been in a courtroom before. I’m sad to hear you only just won though. I remember the judge saying something about hoping that my anxiety improves soon. I’ve had anxiety all my life, I’m not just going to wake up tomorrow and feel better! Take care of yourself and I hope your payments start soon 🙂
All the best,
Helen
Thanks so much, Helen. The part which really took me aback was when the doctor on the panel said “you say you are dizzy and with balance issues, but you look normal to me.”
I’ve had 5 inner ear surgeries so far and counting – I was just gutted. He could have said the same to a cancer patient, as that largely isn’t visible as well.
I totally relate too about the “improves soon” comment. It isn’t exactly like that with chronic illness and disability, is it?
Oh my goodness, a lot of us DO look normal, that’s the thing. A lot of us ARE normal but we need someone with us to make sure we don’t slip or fall. It’s horrible that they can say such things. I took a fall about an hour ago, I’ve just finished bandaging my foot as we speak. I’ve aggrevated my RSD foot but fortunately avoided landing on my RSD knee.
I found that the doctor on my panel made me feel stupid. When he asked me how big I thought a bus was I had to stop myself being sarcastic to him. It’s a first and only time that a bus has been a measure of distance for me!
Exactly! I think if we could all wake up tomorrow and normal, healthy people, none of us would be applying for benefits. It’s a completely ridiculous thing to say.