This is going to be a long one, so buckle up.
As I’m sat here, I am writing to you about the past 15 months of my life. The 15 months I have spent battling the system that is the UK, Personal Independence Payment (PIP). This exact system has had a deeply, irreversible effect on my physical and mental health. How it has led me down a path of self-destructiveness, and overall affected my wellbeing.
15 months ago, July 2018, I put forward my change of circumstances form as both my physical and mental health has deteriorated. I suffer with a condition called Ehlers Danlos Syndrome (EDS), a connective tissue disorder that as a side effect causes my joint to dislocate extremely easily, and effects the way my internal organs work (or don’t work). EDS also comes with a sweet handful of co-morbidities. For example, I suffer from an umbrella term condition called Dysautonomia, more specifically Orthostatic Intolerance – Postural Hypotension, meaning, when I stand my blood pressure doesn’t know what to do, therefore drops to a dangerously low pressure, causing my heart rate to spike to try and keep my blood pumping up to my brain and heart. Because of this, I am at risk of blacking out, making me a fall risk. I am now dependent on crutches and part time wheelchair use to get around. Alongside this, I have a mental health condition called Emotionally Unstable Personality Disorder (EUPD) (known in the US as Borderline Personality Disorder or BPD), causing me to have extreme, rapidly changing emotions, which often leads to instability and impulsive, destructive behaviours.
Now we have the medical shenanigans out of the way, let’s talk about PIP.
I would like to talk about my dehumanised, unfair, and triggering experience battling through the system. Once I had filled out the long, long form once more, I was invited to a face to face consultation, where mine happened to be with an ex Accident & Emergency Nurse. When I heard her tell me this, I naively felt at ease, as if I had someone who would truly understand my pain, struggles, and conditions. Oh, how I was wrong.
During the consultation, you are supposed to be asked questions about your daily living, your mental health, and your physical conditions. You should be asked to perform some basic tasks on your upper body and lower body, and then given enough time at the end to add anything the assessor missed. This was not entirely the case in my experience. Although I was asked a bunch of questions, when I received my notes back, my words were not recorded correctly. I was made out to be a liar, and she massively downplayed my symptoms. She stated that there was nothing wrong with my mobility, and because I was clued up on my conditions, I was healthy. She stated I had normal range of movements in all of my joints (the whole definition of EDS is that this isn’t the case), and she had written because I was well presented, there was nothing wrong with my mental health, including writing down that my self harm was just superficial scratches, despite me wearing trousers and a jumper hiding most of the scars and marks. Because of this, I was denied PIP and my payments stopped instantly.
This is where it all began to unravel in front of me. This is when I began to appeal the decision.
Upon reading these false statements, my mental health instantly set a match. A match that lead me into a 15-month long self-destruct. Reading the statements, she wrote about my mental health being fine and my self harm being ‘superficial scratches’, which triggered my destructive behaviours, causing my self harm to increase in severity and frequency.
When I initially appealed the decision, I was instantly sent back a form of dismissal. Within the space of a week, they had apparently taken my appeal to the board, and decided that the assessor was correct, and my PIP was once again refused. So, I decided to give myself a voice. I decided I had the fight in me to take the case to a tribunal. Take it to court and let a panel of 3 independent assessors (A Doctor, Judge, and Medical Liaison) decide what was best. This is where the 15 months wait comes into play.
The 15 months wait took a toll on my mental and physical health. I saw a huge and dangerous increase in my self harm, causing 4 suicide attempts, and multiple hospital treatments for burns. My mental health was hitting rock bottom, and it all felt completely out of my control. My physical health was deteriorating in front of my eyes also. I was experiencing more and more dislocations daily, including A&E visits for thumb dislocations that didn’t relocate properly. I can no longer walk long distances, so I bought myself a wheelchair, which I am still learning how to self-propel, and I am blacking out more and more, including blacking out on the stairs a few weeks ago. It was seriously unhealthy, and dangerous. The stress, pain, and decline which wasn’t helped by the cruel words of my assessor, and the stress of the whole situation.
After waiting 15 months for a Tribunal date, I thought once the time arrived I would start to feel better about the whole situation, about the fact that I finally have to time for my voice to be heard, but that was far from the truth. The truth was, I was terrified. I was hurt. I was in a fit of panic for the weeks leading up to the date. I didn’t know what to do, because once again, I feared my words would be twisted and used against me. I was wrong.
On the day of the hearing, 15th October, I attended the Tribunal centre with my Mum. I was an anxious wreck, but she did everything to help me remain calm. Before I went into the room, a lady came out to me and talked me through how the day would go. She told me that the panel had read my report, and gone through all my supportive evidence that I had sent in. She told me who was on the panel, and briefly explained how things would go. This is how it worked out:
The Judge: He was there to open the tribunal, ask some brief questions about myself, who I was, and who I had with me. He explained how the next hour or so would pan out and was there to ask anything he felt was missed by the others on the panel. He was here more as a formality.
The Doctor: He was there to ask me questions in relation to my health conditions, he spoke to me about EDS (which he had clearly researched). He asked me what joints dislocated and asked me about my walking aids. He sympathised when I told him about the dislocations and stated ‘that must be excruciating,’ which I agreed. We then went on to talk about bracing and other assistive devices. He asked me about my Postural Hypotension, and what risks that causes, for example, fall risks. He was very detailed with his questions, which honestly, given my previous experience, I was skeptical of the whole conversation, going over, what could be used against me, but I had to be honest, all I could do was be honest.
The Medical Liasion: She was there to ask me questions about my day to day living. She asked about my ability to cook and use utensils, how I struggle with holding things because of my fingers and hand functions due to EDS. She asked about assistive devices I use such as large grip jar openers and perching stools. There were questions on how I clean around the house, and what support I get from my parents at home. We then went onto how I get out and about, if I go places alone, hang about with friends, etc. It was at this point where I broke down a little. You see, it’s not often, if at all, that I go out alone. I am almost always with someone, be that my mum, or my partner Hanii. I got overwhelmed by this question because it is a huge ass reality check. I have grown up as the kid no one wants to go places with because arranging things for me and my health conditions is just too much hard work to able bodied people. Most of my entire support network is based right here, online. I cried, like, full on ugly cried to the panel at this point, oops. She then asked me about my personal hygiene, how I bathe and about my use of catheters to pass urine.
After all of these questions were asked, my Mum and I were asked to head out to the waiting room, as the panel gathered up the evidence and what was said and set about making a final decision on my case. I’m not going to lie, this felt like the longest 15 or so minutes of my life. I was shaking, holding back more tears, and just generally doubtful that the decision would be made in my favour. I was expecting the worst outcome possible, that they didn’t believe me and would further invalidate my struggles.
When we were called back into the room, we went to sit and the judge told us ‘it’s ok, this will only take a moment’, my heart sunk. Then, much to my surprise, they said the panel has come to the decision that they would be awarding me PIP. Honestly, I was shocked. I was in a state of surprise I never though I would feel; you know, like them videos you see where a child gets the surprise of a lifetime for Christmas? Well, that was me right then, I couldn’t have said Thank You anymore if I tried, I was overwhelmed with happiness.
So, the whole point of this blog post is to tell you that if you’re going through this currently, in the past, or in the future, you can fight this, and when you come out of the other end like me, this truly is all worth it. It’s hard, I’m not going to lie, but you are in no way, shape, or form, alone. The wait is a long one, it takes on average around 18 months to be seen at Tribunal level, on average 75% of PIP applications are denied at the first assessment. Those statistics are dehumanising and just plain wrong, but they’re the facts. As I was leaving, the lady who came out to me before the hearing walked us out and there, she told me, almost all cases that go to a Tribunal, win. That’s because those who fight for it, need and deserve it. If you don’t think you’re strong enough, let me hold you up with you get in there kicking and screaming. You are not alone.
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The Haven 