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 😢

So if you can still dress yourself etc yet not really feel fully cognitively ok, that in itself is the criteria they look at? I appreciate that it is based on how your condition affects your day to day living and necessary care, but if people who have brain injury etc don't feel well enough to work, but aren't impacted enough to need care, are we the grey area of the state support system? Do we just slip through the cracks and do what we can, even if it's harder than it was?

Maybe i am focusing on the wrong thing. 😞 I'm in a Facebook group for people with concussion and it's a common thing where a lot of them are struggling hugely, yet get no chance at all with PIP etc.

A number of pieces of advice:

firstly keep every single piece of paper relating to your medical diagnoses and ideally photo it or scan it and save it on a computer.

secondly: there are benefits out there for this situation that are not PIP. In particular if you have worked up until relatively recently you will be entitled to contributions based ESA. Details here:

https://www.gov.uk/guidance/new-style-employment-and-support-allowance

this is the primary benefit for if you are too ill to work.

pip is a disability benefit for people who both work and do not work. It may be worth you applying again.

if people who have brain injury etc don't feel well enough to work, but aren't impacted enough to need care, are we the grey area of the state support system?

Sorry but it is not a grey area. It is very clear. Inability to work due to health is managed through entirely different benefits. PIP is not about the ability or inability to work - it is only about "care needs".

Isn't the idea that PIP pays for extra costs which you incur due to your illness/disability? Do you have extra costs? Do you need carers, or different forms of transport, and so on?

I understand you're seeing yourself as falling into a grey area, but in theory people receiving PIP should be spending the money on carers and additional transport costs etc, so they aren't actually any better off than disabled people who don't have additional costs. It's just a leveller.

That's very helpful, thank you 😊

No i know but op mentioned that they're not at work due to their illness, and I think that shouldn't be a worry either

How did you bang yourself on the head?

Stupidly self inflicted, phoning my daughter playing on a wooden tree house thing. I climbed up a ladder and didn't look up then banged the top of my head on a wooden beam 😪💔

I applied for PIP twice. Got help from
A local charity on the first application and got 0 points. For the second application, I paid (£40 I think) for the PIP training course on www.benefitsandwork.co.uk/ and got awarded straight away. It was worth every penny. The course is particularly good for fluctuating conditions.

My second tip is to generate some extra evidence. I had a letter of support from my employer which I know carried a lot of weight because the assessor said something along the lines of what a good letter it was. I also got letters from a neighbour and a family member. My GP wrote a letter too. I made an appointment to see them, asked them to write a letter and discussed the type of thing I wanted them to write about. I also made notes for the GP to make writing the letter easier.

My third tip is to ensure that all the answers in your form are backed up by your evidence. So if, for example, you say you can't walk very far, get your neighbour or a relative to write a letter about how they have to drive you to places because you wouldn't manage on public transport.

Again, you are focusing on the wrong thing - “if people don’t feel well enough to work”.
That is not what PIP is for. It is not an out-of-work benefit.

If you are claiming on the basis of a brain injury (as you say) they would be looking at previous and current specialist input (not just a diagnosis from an A&E doctor) rehab etc to show severity of the injury. Post-concussion syndrome is not expected to be permanent.

If you are claiming on the basis of tardive dyskinesia then that is different and you would have to go down the route of how it affects you physically carrying out tasks, for example preparing food if it affects your limbs.

Pip is a disability benefit. Concussions are not regarded as disabilities which is why you have been rejected. Have you been suffering from depression or any mental health issues? That would be regarded as grounds to pursue a new application if you have been suffering with it for over 12 months and take medication, therapies etc.

I probably should also ask, who diagnosed the tardive dyskinesia? This is something that usually occurs after many month and usually years of medication use, certainly not one week.

Pip is to contribute the additional costs of having a disability. It’s not an out of work benefit. if you don’t fit the PIP criteria but your worry is not being able to work, have you looked at actual sickness benefits? Has your GP signed you off work?

A very good private neurologist who had also worked for many years as an NHS doctor too. It's an absolute misconception that tardive dyskinesia takes years to develop after high doses.

My neurologist said I was very unlucky but even some people get it after just one IV push of an anti-emetic med, for example. It's not the duration of the drugs, it's the susceptibility of the person and how they are able to metabolise the drugs and if that will affect their chances of getting anything like adverse effects.

It was also a higher risk for me as I had the concussion. I paid for a subsequent pharmacogenetics test and it showed that absolutely antipsychotic drugs or something in a similar class should be avoided as I am more likely to get a bad reaction.

No, I am phoning the doctor tomorrow to get a fit note, but as a freelancer, I obviously don't qualify for statutory sick pay.

I agree with you in some ways, but have to respectfully disagree in others. I feel very much disabled by my concussions and it's certainly affected my life quite significantly.

How does it affect you day to day?

Can you plan a route for example. So if you needed to go to hospital, could you plan your route there and get there independently?

Do you need prompting to take medication or eat?

Do you need help bathing?

Can you prepare food? Follow a recipe, plan a meal?

Can you go to shops independently?

These are the sorts of things you need to prove.

The thing is, I can do these things, but it's an effort at times. I find my DH has to organise my time and remind me of a lot of admin etc. Much more than he ever used to before. I can do most of these daily living things myself though.

It's more the cognitive abilities that have been affected, and my writing skills have been impacted quite a lot.

During my first concussion, I would look at the press releases I had to edit and none of it made sense. The words lost their meaning, they almost became hieroglyphics. I would not edit with ease, I'd say that I'd sit there and the alexia made me have to work three times slower to get a decent piece written. Even now, my comprehension of anything quite complex takes me twice as long to get to know.

I read voraciously before. Now I can barely read a chapter of a fairly simple novel.

Obviously these aren't really anything that affects my day to day living,so of course they are not going to get any points for the disability aspect of PIP.

It's the loss of my key skills, things that kind of defined me, that I feel the most.

Sorry for the rather rambling reply! 😂

I’m sorry to hear that you have been struggling but unfortunately none of the things you listed would deem you eligible for a disability benefit.

Not even something like the new style ESA?

Perhaps speaking to an advisor at the DWP or even Citizens Advice Bureau directly could help widen your horizons of knowledge on your eligibility criteria to advise you on how and if you are able to receive that extra bit of support based off of your circumstances.

You haven’t got a brain injury.

You might have had concussion some years ago from a garden accident.

Concussion isn’t a brain injury.

If your functioning is lowering, have you considered likely causes?

Google dementia, psychiatric illness, neurological conditions such as Parkinson’s. They often also cause tremor.

Having said that, you don’t have a disability. Reading novels not tech manuals won’t count as one.

Be careful what you wish for.

You’ve answered your own question really, none of the issues you are experiencing qualify you for PIP - You don’t need additional help with basic living tasks and can manage ok but just feel rubbish.

PIP is there for people who need help with basic things like washing or cooking or maintaining their home and may incur extra costs to achieve those things.

The problems you specifically mention are either work related or social skills and obviously not covered by PIP.

You may well be eligible for UC and LCWRA as your ability to work has been impacted.

Yes, it is. A mild traumatic brain injury. It's very much one. And the movement disorder is definitely a brain condition. It was diagnosed by a neurologist. It's on my medical records.

We will have to agree to disagree.