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PIP decision, epilepsy, zero points

u6nfx3

Hello,

I have just received my PIP decision letter and have not been awarded PIP. I know that it can be challenging with epilepsy, but I wasn't expecting to score zero.

In general the response was "You said that that you can't do X unadided, I have decided that you can do X unaided".

I haven't had a tonic clonic in over a year which has been great, but I continue to have absence seizures every day. There are also elements of the response that don't line up with what I said or wrote

- "you said your medication was effective" > I'm still having absence seizures, and the medication has side effects

- "you are not disorientated after absence seizures" > I said that I lose my train of thought

- "you are fully aware [when having absence seizures'" > I am not, I lose conciousness

They seem to think that not speaking to a consultant in the last year means I'm OK - I can't make appointments unless they are emergencies due to COVID.

I also said that I cycle, but it's a risky activity. I can't drive. It's the only freedom I can get other than public transport, and it's one of the few things I actually enjoy.

With all of the injuries, time I have had to take sick leave last minute because I haven't slept well enough and might have had a seizure, the constant embarassment of absence seizures in public settings, the dental problems from injuries, not being able to drive, the risk of having a bath and shower, same with cooking, I would at least have expected a few points.

The letter makes it feel like the impact of my illness is meaningless to the assessor.

I have gone to great lengths to try to cope with my condition over the last 15 years. This means I have to put myself at risk to live like a normal person.

- it would be a lot safer to never cycle and to be accompanied when near train tracks

- it would be a lot safer if I didn't use the hob or knives, and was supervised when cooking or pouring boiling water

- it would be a lot safer if someone could be around when I shower in case I have a TC

- it would be a lot safer if there was someone who could hear when I have a TC at night

Any advice or support would be appreciated, I just feel a bit upset - and it's not about the money as much as it's about someone recognising that this has been a huge burden, and that trying to get on with it and live it is a bad thing.

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Comments

janer1967

Hi and welcome

Sorry about your PIP decision

It us always hard when you get turned down and reading the comments

Dont forget it is just the assessors opinion based on what you said and not fact

If you want to appeal then put in MR the success rate isnt high but is a lot better at tribunal

Dura

Have a look at my post Epilepsy pip it takes you through the process of pip claim including tribunal.
The fact you ride a bicycle and carry out all the daily tasks you mentioned, with Epilepsy, would in my opinion give the assessor the impression that Epilepsy was having little or no affect on your daily life, the very thing a pip award is awarded for.
You said you have been injured when fitting it is wise to photograph the injuries and back up with hospital reports.
My wife received a full depth burn to most of her hand whilst attempting to cook, the DWP said everyone who cooks can expect the odd scold or two, he had not even seen the photograph I sent with my application. This oversite went a long way to overturning the DWP at the tribunal.
The fact you have to cook etc unsupervised should not deny your right to a pip award but it would be helpful to be able to proof you have been injured whilst doing so.
However the fact you ride a bicycle appears to me would affect many areas of a pip claim for mobility, my wife is accompanied at all times and yet we still had problems convincing the assessor regarding this fact.
You are standing up to your illness, for which I commend you, however this will not win you points when claiming a pip.
When you put in your MR, the next step before the tribunal, approach it from how you are after a fit, injuries in the past and how having to cope alone with all the risk this involves, affects you mental health.

Queenofdisabilities

Hi how are you feeling today?
You honestly aren't alone!

[Removed by moderator]

Adrian_Scope

Hello and a warm welcome to the community @u6nfx3.
I'm sorry I've had to remove a couple of comments from your thread that weren't relevant to your query or weren't appropriate, so it may seem some of the replies are a little disjointed.

u6nfx3 said:

I just feel a bit upset - and it's not about the money as much as it's about someone recognising that this has been a huge burden, and that trying to get on with it and live it is a bad thing.

I think this is a really common feeling and I've seen others say it feels like the difficulties they experience have just been brushed aside.

Will you be challenging the decision? As @woodbine mentioned, the first step of this is to request a mandatory reconsideration.

Do you have a Welfare Rights or similar organisation in your area? It might be worth checking out Advice Local.

julie2419

I have epilepsy since i was 18 and agree with you @u6nfx3 that its not about the money,i had a fall today and hurt myself on my back because i get no warnings that it's going to happen. Its difficult each day and with pip even though i said all this im appealing as they couldn't understand what its like for me on a daily basis. My MR, they wouldn't and couldn't understand and didn't change their mind,how difficult things are for me.

julie2419

Just resting as its paining alot,but its not the first time,ive had a few falls this past week,i keep a diary. I just get no aura warning its going too happen. Thank you for asking.

julie2419

@woodbine,im glad i came onto this site as its soo difficult too talk too other people who dont understand what it is like. Im soo glad i can open up on here too people who have the same problems. Thank you.

Dura

Mike

I would say that riding a bicycle when you look at Mobility Activities section – planning and following journeys and moving around, would result in a 0 points award for both. I am of course assuming that if you can ride a bike for some miles you can be expected to be able to walk unaided for more than 200m.

Planning and following a route, riding a bike would give the impression the rider could manage both

again resulting in 0 points

Which appears to be the opinion of the DWP.

If my wife suggested taking up riding any form of vehicle on the road, when at any point without any warning, she is unconscious, I would advise her not to bother. That is why the DVLA remove licences. This is of course not a judgment of the person who started this conversation.

calcotti

Username_removed said: The question is whether you can do so reliably, repeatedly, safely or in a reasonable time.

To which one should also add the majority of the time. Some people have bursts of energy but the majority of the time are much more restricted in what they can do, or simply want to do something because of the pleasure it gives them even though they know it will wipe them out for several days afterwards.

calcotti

Username_removed said:..concept of good days and bad days.

I carefully avoided using that phrase!

hen

I got s chance on both parts for epelpsy and this time no assessment and 10 year no review

sarah1977

https://forum.scope.org.uk/discussion/comment/397370#Comment_397370

Hi, where can i find your post. My daughter has had standard daily living and high mobility for 5years, she has just had renewel and only got 4 points so we are waiting the assessement report and doing a MR. She has a few other things lile problems with her eyes which she got points for and urine incontince. But no point at all for supervision in kitchen or when bathing. She lost all her mobilty points, even tho she goes nowhere alone, as she has had a seziure before on car park which resulted in a serious injury and had to have her head glued. Her seziures are not a often as they used to be as medication is helping keep them at bay, but the risk or danger to life is still there as if she was to have a serious alone in a bath for example, she would be in danger. Thanks

Rosie_Scope

Hi @sarah1977, this is a post from 2021 so the members may have moved on since then. Dura's epilepsy post is here in case you'll find it useful: Epilepsy application for PIP.

You'd be more than welcome to start your own discussion if you wanted to hear whether any current members have experience of this. If you'd like to do that, just click this New Discussion link ☺️

sarah1977

https://forum.scope.org.uk/discussion/comment/1084540#Comment_1084540

Thank you

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