What To Expect When.. You Apply For PIP (Personal Independence Payments) For Trigeminal Neuralgia

I applied for Personal Independence Payments (PIP), a benefit in the UK, which helps with the cost of living if you have a long term condition or disability and have have difficulty completing every day tasks, such as making meals for yourself, or getting around.

If you didn’t know already, I have a condition called trigeminal neuralgia and I also have a visual impairment.

I thought I would apply for PIP, so if you’re thinking of applying for trigeminal neuralgia, you can read all about the experience first. I know a lot of warriors like us get turned down for benefits, because our condition isn’t always known, or recognised for being as difficult to live with as it is.. Is that the understatement of the century?

I look like a ‘normal’ 30 year old and some days I can function completely fine. However, at any minute, I know that a pain so intense that it feels like im dying can strike at any second, that could knock me down for days at time, taking away my ability to speak, eat, touch my face, brush my teeth, touch my hair and smile.

PIP is awarded if you get a certain number of ‘points’ for your application. It also comes in two sections – mobility and daily living. I will only be talking about the daily living component, as my mobility is fine.

To get to the stage of being able to make an application, you need to call up and ask to apply. It says online that you can also apply by post, but you need to be aware that these applications take longer. I find it hard to believe how it could be even longer than it takes to apply over the phone, then online, because this process is slow.

I called the number given online and I waited on hold for 20 minutes, before starting my application over the phone, which took around half an hour. I hate to be cynical, but a little part of me wondered whether this was a bit of a scheme to put people off applying. I have a friend who has different medical conditions to me, who receives PIP, but her conditions mean she can’t sit on the phone for an hour. At the time, I said I felt the process was designed to put off applicants, possibly to make sure only the people who really need the benefit go to all the effort of applying.

The phone application was a little more detailed than I was expecting. I was ready with full details about myself, my address, my GP details, then I was asked for my national insurance number and (which both seemed premature, but I handed them over). Then I was asked who I should put down as my references for the application, but I hadn’t considered I’d need them at this stage. My new doctor doesn’t seem to know anything about trigeminal neuralgia, so I opted for my old GP.

Side note, I rang my old GP surgery after the call and asked would my old doctor be happy to provide a reference for my application and even offered to pay, but the receptionist said no, without asking her. I can only hope that whoever is processing my application has more luck than I do!

After around a half an hour question and answer session over the phone, I was then emailed an application form, which I had a month to complete. I was told that if I didn’t complete this form without a month, my application would be automatically rejected and I would have to start the whole thing again. I didn’t complete this application straight away and around a week before the deadline, I received a letter in the post, extending the deadline by an extra two weeks. This surprised me, compared to the phone call at the beginning of the process which would clearly put anyone off.

I completed my application form in one evening and it was long, with a lot of it being not applicable to my condition every single day. I have good days and bad days. The questions asked me if I’m capable of doing a lot of things, which some day I am, but other days I don’t stand a chance of doing anything. I tried to answer the questions as best as I could as a general overview of my health conditions.

The questions ask if you are able to eat, drink, prepare food, wash, use the toilet, dress yourself, communicate, read, manage your own medication, make decisions about money and socialise.

The mobility questions, if you’re interested, are about physical movement, leaving your home and planning a route when you do.

Some of the things don’t apply to me personally with TN or my eye condition, such as the mobility questions and about using the toilet. The big ones that apply to me are questions regarding communication, eating, drinking and socialising. I can prepare food, but I might not be able to eat it!

I was honest in my answers. I don’t have to exaggerate anything when living with TN. My thought process was, if this comes back as a denied application, it just shows how little is known about being able to function normally with trigeminal neuralgia.

I was asked to attach evidence, but I don’t actually have any. I don’t have copies of letters from a consultant, because I consistently ditch the neurologists who are assigned to me, because of the incredibly low quality of service and lack of medical care – throw back to when I was told I had a migraine, or maybe PTSD – and I don’t have an assigned consultant for my TN, or for my eye condition, since my last consultant left. I don’t actually get a lot of medical care for either of my long term health conditions; seeing neither are curable, I just plod along by myself for the most part.

I attached a small note at the bottom of my application, saying I was struggling. That was it.

I waited for a reply for weeks. And weeks.

Ten weeks after I filled out my detailed application, I received my phone call assessment with a nurse. You are assigned either a doctor or nurse who will assess you on the phone, or in person, basically going over any questions they may have about the form you filled out. These doctors and nurses do not make the decision, but they write to the person who does make the decision. I’m pretty sure the nurse I had said it was assigned back over to my Case Handler.

I had received a letter to give me my date for this call around two weeks prior to the assessment, but I was told to call up if I wanted this to be recorded. Strangely, when I called up to say I wanted this, I was told that my appointment would need to be arranged for several weeks later, as they didn’t have the facilities to arrange this for my assigned call. I was told that if I wanted to record the call myself, I would only be allowed it for personal use – I assume she meant ‘not in an appeal’.

In the interest of my blog, I decided to go down the route of a non-recorded call and agreed to keep the assessment date I already had. We’ll see if it makes a difference if the calls are recorded or not!

I received a reminder call the day before my appointment and on th3 day of my assessment, I was called on time by a nurse. We talked through the form I’d filled out and she asked me extra questions: did I have any pets, could I manage the stairs in my house, did I have social anxiety when meeting new people? Very little of the call related to my daily struggles with TN, or any facial pain condition.

I was asked could I prepare food, which I can. I wasn’t asked if I could eat the food.

I’ve always heard that you should act as of it’s your worst day when applying for PIP. Instead, I told the nurse that this was a good day. If it’s a bad day for me, I would be in bed, unable to speak, take my meds, move, drink water, go use the bathroom, eat, brush my hair, or teeth, or function at all. I wouldn’t be having my assessment. I wouldn’t be able to do anything. I would be waiting for the pain to pass and my flares on average last four days at a time.

I asked the nurse if she’d heard of TN and she hadn’t before my assessment form was handed to her. All she had to go off was a ‘quick Google’. I told her that I hoped the decision make of my case has heard of TN and knows how bad it is.

I told the nurse how I thought I might die when I was first in pain, I told her I’d had counselling for depression because of my pain. I told her I rely heavily on friends and family to get by.

I’m just waiting for a decision now that could take 6 to 8 weeks and, honestly, I’m expecting that I look okay on paper, despite living with the Suicide Disease.

I’m going to finish with another blog post I wrote: I Can Explain My Trigeminal Neuralgia To You, But You Won’t Understand.

To read the outcome of my PIP application, please click here.

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Trigeminal Neuralgia What To Expect When..

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