To read about my PIP application journey from the start, click here.

I’m not going to write a big build up for the outcome of my PIP tribunal: I don’t qualify for any points for living with trigeminal neuralgia and the court upheld the DWP’s decision.

This blog post is not to put anyone off applying for PIP. More people need to apply and more voices need to be heard in order for people living with TN to be able to get PIP. We need to be loud about TN, more people need to know about it and it needs to be more widely understood.

A couple of weeks ago, I had my PIP tribunal meeting, in a virtual courtroom, with a judge, an independent decision maker and a doctor. I had waited for this tribunal court date for over a year, in total. I started my application for PIP in early 2022.

I was told I would hear back about my tribunal date on 19th December 2022. I heard back in June 2023.

I chased this tribunal date like nothing else. I emailed the DWP, I emailed the courts and I emailed them some more. I was initially asked to provide dates I could not attend court, but these dates came and went by months and no one contacted me.

I eventually received a tribunal date in the post, giving me around 3 weeks to prepare and, honestly, I didn’t do anything. By this point in the process, I have run out of ways to care about receiving PIP. I feel so unwell all the time and all the DWP had done was tell me I was actually fine.

On the day of the tribunal, I woke up feeling absolutely rotten, full of a cold and I couldn’t actually work. Whenever I have a cold, I think the pain in my sinuses triggers my trigeminal neuralgia pain too. I usually put my ‘game face’ on, but I didn’t have the energy to that for the tribunal. I showed them my authentic, unwell self: no make up, shoved a hoody on, didn’t mind that I couldn’t brush my hair and I did the Zoom call from my bed.

I honestly believe it had already been decided before the tribunal. I don’t think my evidence was considered and I was asked questions that were deliberately written to try to trip me up and discredit myself.

I went into this process being honest about my medical conditions. When you have TN, you look for ways to make your life sound better, there’s nothing to play on, because it’s already as shit as it can get. My face hurts all the time, I don’t want to do anything & what I do want to do, I can’t. You hear people saying that to get PIP, you have to act like it’s your worst day. That’s the funny thing about my tribunal day. It was an awful day, a standard day for living with TN. My mental health has been battered down into a pulp, my face was absolutely burning in pain and I couldn’t have made myself look presentable if I’d wanted to.

I logged onto the “zoom” style link I had been emailed by the court 5 minutes before the time I needed to be logged on. I’m always early, it’s polite. The court didn’t join the hearing until half an hour after the start time. It honestly just felt like another thing they do to try to wear you down in the process, to hope people give up. It does say in the email you receive from the court that you will receive a phone call if your hearing is delayed, which I didn’t.

The video link turned out to not quite be fit for purpose. My hearing isn’t the best, but I’m not hearing impaired and I could only just hear the panel. It looked like a CCTV of an office, with the panel sat around the table – a judge, a doctor and an independent panel member. Dialled into the call was also a woman from the DWP, for if the court wanted to ask her any questions, or if she had any questions for me.

I was introduced to everyone, but I’m awful with names, so it would have been good to be provided with these beforehand. It might be worth taking notes during your tribunal if you also struggle with names.

At the start of the tribunal I said I was finding it difficult to speak today due to the pain, but the judge told me that the only person that could explain my medical condition was me.

The panel took it in turn to ask me questions about my health and I could tell that no one, not even the doctor, had researched trigeminal neuralgia beforehand. I asked the doctor if he was familiar with my condition and he said he “knew the basics”, but wanted to know how TN affects me personally as it “affects a lot of people differently”.

It was at this point that I knew I wasn’t getting PIP.

Even though people are affected differently by neuralgia and, believe me, I know a lot of people with trigeminal neuralgia at all different stages, all different types of pain, there is no one I have ever come across or will come across that isn’t affected by crippling, unbearable pain.

The doctor had no understanding of trigeminal neuralgia and I would assume he’d had a quick Google before the tribunal.

He also kept asking me what other symptoms I had. I explained to him that the one symptom of TN is facial pain. It’s a nerve condition with pain being the only symptom. There are similar conditions to TN with different symptoms, like SUNA that may cause the eyes to water, etc, but the symptom of trigeminal neuralgia is pain. I’m also very good at explaining exactly where my pain is and my pain levels, after countless appointments having to do so for the last eight years, so this probably went down on my notes as sounded rehearsed. Unfortunately, the alternative is sounding like I’m being vague, so I couldn’t win either way.

I was asked the classic: “But you’re talking now?” Obviously. How original.

I was picked apart at giving dates I wouldn’t be available to attend a tribunal at the end of the 2022 – the dates that had been and gone without contact. Why wasn’t I available on those days? What could I possibly be doing if I’m chronically ill?

I was told that it didn’t matter that I couldn’t brush my teeth. I was told that PIP only applied to being able to have a bath.

I was asked why I couldn’t wash my hair, despite me trying to describe the pain numerous times. I was told my memory was fine, because I was “clearly intelligent”, so then I was pulled apart for needing help from family to organise my medications, appointments and finances.

I was put on the spot and asked unfair questions, like what would I do if I was in agonising pain, but my daughter needed picking up from nursery in an emergency.

My life does not completely stop because I am in pain and I called out the panel member on this question full of prejudice and bias. If my daughter needs me, I will go and get her from school. I would crawl to her nursery in an emergency for her, because I’m her mum and I love . How dare that be held against my benefit claim.

I was asked why I don’t go out lots “in June, because the weather is fine then” – I really wish I was joking.

If I worded anything slightly differently to how I’d written it in my PIP application, such as using a different example of something, the judge would then read out my application to clarify what I meant.

The conversation lasted around 45 minutes and then I was placed in an online waiting room whilst the panel decided if they would uphold the DWP’s decision. I was invited back into the meeting after 40 minutes and told that I do not qualify for PIP. No one checked whether I had heard or understood this decision. As soon as it was announced, I was told everyone was to leave the meeting and the call cut off to black. Despite knowing I am depressed and am awaiting counselling, not one person in the meeting out of four asked if I was okay. Between me being invited back into the meeting and the video call ending was around a minute and I didn’t speak.

I received a letter in the post confirming the decision around a week later.

The thing that most bothered me about my tribunal is that I had to admit that I couldn’t do things and ask for help. Normally I will lie and put a brave face on. I work through the pain every day. I felt honestly pathetic telling a board of people that I struggled with things.. and then didn’t even qualify for PIP at the end of it!

This is exactly why I put my ‘game face’ on every day and say I’m fine. I refuse to be made to feel like I can’t do anything, or that I’m lying about how unwell I am, when no one is going to reach out an arm to help me, but myself.

I’m not going to keep this blog post impartial. The PIP benefit system is not fit for purpose, the DWP and courts are uneducated and biased, working on their own ideas of what disability and independence should look like and we need to keep applying and speaking up as loudly as we can to stop people living with TN being turned down for benefits they need.

The Pain Corner does not make any profit. If you enjoyed reading my blog, or found it useful and would like to make a donation of £3 towards the cost of the domain, you can do so by clicking here. Your contribution will help keep this website running. Thank you!