Not eligible for PIP even with a decade long movement disorder and 3 concussions

[ForeverDelayedEpiphany]

Just had my third concussion last weekend and feel awful.

I've also lived with a movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after my first head injury, and that's been awful for the past decade.

I've managed to work ok in a new job for 6 months but im now off work and terrified I won't get better that quickly. My first concussion and post concussion syndrome meant I was ill for a year, and i lost my ability to read - not great as someone who is an editor 😞

I've applied for PIP in the past and been rejected. I don't know where to turn 😢

Apply again. Then do the mandatory reconsideration. Then appeal ❤️

Just keep applying, its such an awful system but you can't work with seizures xx

Appeal and I would suggest you get help when filling the form in. It’s all to do with phrasing . The citizens advice can help or point you in the direction of others who can help

Can you claim ESA? I get cont based ESA. Do you have any mental health issues as well? I found with PIP they seemed to focus more on that than my other problems.

I think with PIP and seizures it depends on how frequently they are / how much of a risk they think it is?

Maybe you can get some advice specific to this online. The Benefits and Work site is good.

You keep posting about your concussions but they seem to be ordinary bangs on the head. Did a doctor diagnose actual concussion?

Pip isn't an out of work benefit, that would be ESA

Any other problems from the antipsychotics, are you still on them and why were you? Just wondering if this might help with PIP.

Assuming you've got worse, apply again.
If you struggle with several of the components in the questionnaire then they have to give you it? If you get several points for a few things.

Yes, I had a diagnosis of post concussion syndrome from an A&E doctor.

And it might have been an ordinary bang on the head, but it was hard enough to be able to give me a lot of physical and cognitive symptoms, including the loss of being able to read, tingling in various areas of my body, neck pain, brain fog, very slowed thinking, loss of my mind's eye and imagination... all pretty awful symptoms from "ordinary" bangs on the head...😖😳

They were really prescribed off label after a lot of other psychotropic drugs didn't help with severe anxiety and insomnia after almost 6 months of post concussion syndrome symptoms. Im not on them any more, and literally only took a week of the antipsychotic to cause a permanent neurological movement disorder 😪

Have you seen a neurologist or someone who diagnosed the movement disorder and could explain the cognitive problems etc? This might be helpful.

Unfortunately my neurologist who diagnosed it retired years ago, which is so annoying as he was brilliant and very compassionate.

I could retry the neurologist route but it's hit and miss if you get a good one on the NHS. The one I saw was a private one.

If you have any paperwork from it is still might be useful. I have something rare and when it went to the appeal stage sent in details of the diagnosis, not sure if it helped or not but I got it in the end.

You are focussing on diagnosis / symptoms and that isn't what PIP is about. Nor is it about whether you can work or not. PIP is about impacts. Based on what you have said here, I suspect you may be focussing your claims on diagnosis. For example, you said here " i lost my ability to read - not great as someone who is an editor". From a PIP assessment persepective that isn't relevant - being able to work as an editor, or even being able to work as anything isn't a test. But being unable to read the words on your medications so needing help to do that, needing help to read a bus timetable so that you can go out - those are impacts. So being unable to continue in your employment may because you cannot read becomes one factor in a range of barriers that you face but if it is treated as the only or major problem, then you weaken your case for claiming. Each category needs to be addressed in terms of the barriers presented to you in your day to day life across the board.

I thought that a person had to be having difficulties for at least 9months beforehand, in order to be able to make an application. Someone will perhaps correct me, if that is not the case. If you have got worse from your on going condition, you may benefit from getting help to get that across.

pip isnt about diagnosis/conditions its about care needs, do you need another person to help you day to day, or aids etc. unfortunately not everyone is eligible for pip.

So, basically as im seen to be ok in spite of feeling terrible and not knowing how long I might take to get better (in relation to being able to get a job and do it well etc) in some respects, an invisible illness like a concussion isnt going to be able to get something like PIP? Would it be better to go down the low capacity to work route?

I understand what you're saying and based on my replies here, why i pretty much have a weak case. If you saw me, you'd think I was fully functioning and OK. But I still find generally functioning cognitive harder, and this I guess is always more difficult to qualify unless it affects as you say reading medication labels or something.

My original concussion and when my movement disorder started was a decade ago.

No, it’s three months

Having a job and getting PIP have no bearing on the matter. You can work full time and get PIP. Also, you seem to be focusing on the wrong thing. It’s irrelevant that you have an “invisible illness” - your words. The illness, or condition, or disability is completely irrelevant. What matters is how the illness affects you in day-to-day life. Can you wash yourself, get dressed, etc? Go through the descriptors carefully.

Not necessarily. The legal definition of disability - which isn't the only thing used, but it helps - is a condition that has lasted or is expected to last for at least 12 months. Where there is sudden onset there may be sufficient evidence to award (often a shorter term) based on the prospects, but that often requires quite significant medical back up. Someone I know recently got this, but her awards are currently annual - in 12 months time she may not be as severely impacted, it could be the same, it could be worse. But she also had help from a very experienced advisor to make her case.

I think the problem the OP may have is that there seems to be a fluctuating situation with lengthy bad periods but also lengthy "ok" (from a PIP point of view) ones. Those a particularly difficult to get positive assessments for, so I think you are probably correct that this falls into the more normal conditions of showing a longer pattern of impacts.

@ForeverDelayedEpiphany My original concussion and when my movement disorder started was a decade ago.

Again, that is about diagnosis, and PIP doesn't work like this. And a "movement disorder" doesn't automatically qualify; nor does three episodes of concussion over 10 years. You need to break this down. They don't care whether (or what kind of) "movement disorder" you have. They care about what impact that has. For example - I cannot stand or walk without support; sticks or rollator indoors or for short distances, but I cannot walk 20 meters. To do even that I am constantly in pain, and within a few seconds my feet also start going numb which puts me at constant fall risk, whether standing ot walking. That is an impact, it is measurable and the PIP assessor can test that and see medical evidence to that effect. Why that is all the case is irrelevant - they don't care.

It's also not about the care you get, but the care you need

You can claim both PIP and ESA OP, I get both.

OP you need to consider claiming UC and apply for NSESA and LCWRA - the criteria for claiming are different that for PIP, looking at your capability to work (NB not necessarily the work you have done in the past, it means any work). But you are on a hiring to nothing without up to date medical evidence and it sounds like you are lacking this.