Is PIP means tested?

[ViaRia01]

Hello, hope you don’t mind me asking (as I’m not disabled myself but I’m looking into this in relation to my husband’s epilepsy).

I’m wondering whether he might be eligible for PIP, ie whether it is means tested and at what level of income he would be ineligible. Can anyone advise?

I’ve looked online and couldn’t find anything about an income theshold so it looks promising.. but I’m just checking if anyone has any useful info as he is generally not eligible for means tested benefits

Not failing to grasp anything, thanks.

However, I don’t agree that the awards made at first assessment level aren’t legally correct. No changes to the law concerning PIP have been made since 2020. They’re all available on the Government website.

I appreciate that UTU decisions create legal precedent. So in essence someone could argue that an UTU said X to one person and so they should be awarded the same. But there is clearly no requirement for every ruling to change the way the DWP conducts assessments and what is/is not considered.

You think 63% getting the DL component means it is ‘very rare’ to get the DL component? What definition of ‘very rare’ are you using? Even more get the mobility payment.

Do you have a link for those stats, out of interest?

@NorthernGirl1981 can I ask, what does this mean to you in practice? Do you go out alone despite the risk or do you arrange to be with someone at all times? How often do you experience impaired awareness seizures?

I was talking about these stats that were quoted:

”It isn’t unusual to get the DL component either. In 2023, 34% were awarded enhanced DL and 29% standard DL”

I don’t agree that the awards made at first assessment level aren’t legally correct.

If this was actually the case, there wouldn’t be some many successful appeals.

Case law absolutely does change how all (relevant) cases are looked at.

The statistics are in the first link I posted. The source is from the government statistics.

So was I. 34% and 29% is a total of 63%.

No I don’t go out alone, if I go anywhere I either have my husband or my parents with me.

The last time I had one of my episodes when I was alone I went missing for two hours as I went walk-about whilst in an impaired state of consciousness. I’m extremely lucky that I didn’t come to any harm. Once I was found I remained in my epileptic state for another 8 hours.

I’m very lucky that they only happen about once every 6 months.

If we take this thread at face value, then it explains a lot. None of it good.

@SerendipityJane sorry I’m not really sure what this means, could you give a bit more clarity?

Oh I see.

Based on the online support groups I belong to though, where we talk about PIP an awful lot, I disagree that 63% of people who have epilepsy (and only epilepsy) are awarded daily living. From my experience it’s only those who have severe epilepsy, I.e seizures every day and practically need 1:1 care, are the ones who get daily living PIP.
Which is fine and correct in my eyes.

I am glad I get mobility allowance as it is something I need, but I never expected to get the daily living component and don’t see why/how it could be justified either.

Feel free to disagree. The statistics are the government’s. Obviously those who post on an online support group aren’t representative of the whole cohort.

So then you’ll know that the same government website has published all changes to law in relation to PIP, and the last one was done in 2020.

Appeals can be successful for a variety of reasons - often claimants produce a plethora of evidence for their FTT that they didn’t produce before.

Some of the UTT reports have stated that when the particular case was at FTT, the FTT agreed with the initial assessment decision. So if you think there’s an issue following law, it goes beyond the ground level.

Are your statistics based on people who have no other health conditions alongside their epilepsy and live pretty normal lives? I.e they can work full time and have a normal social life and are independent individuals etc?

Because they’re the cohort I am referring to when I say it’s rare for them to be awarded the daily living allowance as their epilepsy doesn’t really have an impact on their life aside from their needs during the post-ictal period.

I assumed your statistics were inclusive of people who had other illness alongside their epilepsy and where their lives are actually restricted in some away on a day to day basis.

Apologies if I have misunderstood.

There’s plenty of case law that has been made since 2020. That is there on the government’s website for all to see. Case law doesn’t change legislation but does change how lawful decisions are made. Yes, the FTT does err in law. That is why there is the UT (not UTT).

As you can see if you read my posts, the statistics are for claimants with epilepsy as their main disabling condition. It doesn’t break it down into whether they have absolutely no other conditions or not. PIP is not an out of work benefit. Someone with epilepsy could still work and be eligible for PIP.

@NorthernGirl1981 I had a feeling the stats come from people with various conditions.

For the DL component, I’d expect most people with epilepsy to get 6 points (I think - I’m not at my desk to double check). So just on the cusp of an award (8 points required). Throw in something like arthritis, and you’ve easily got your other two points. Or depression, and you’ll find several more points. That then tips them into an award.

Some people claim for one condition, but this is rare in my experience. The average is maybe 4 or 5 but I’ve seen it as high as 20-something.

@NorthernGirl1981 thank you for sharing. It sounds really quite a scary situation for you all but you also seem to be quite pragmatic about it and positive to focus on how lucky you were to have not come to any serious harm on that occasion.

Trying to understand a lot more about the condition. I’m not always sure if my husband is quite aware of the severity of what is happening to him. He might say he’s absolutely recovered following a seizure but to me his behaviour/ expression is still a bit off. He had 6 seizures in 24 hours recently. I’d assumed he fullly recovered between each one as he continued about his day but now I’m just not quite sure.

When I have my tonic clonic seizures I’m usually coming back to reality after about 2 hours or so, but I’m still very tired and vague and confused. I’m usually not back to my typical self until the following day.

Since I’ve been having these focal status episodes I now carry emergency medication with me and if the seizure hasn’t stopped after 45 minutes I have to call 999.

With regards to my tonic clonic seizures I have to call 999 if I have two in the same day.

It’s been a while since I had my PIP assessment so I can’t remember what I was asked about but there wasn’t anything on the daily living aspect that applied to me. Apart from not bathing alone I don’t really have any restrictions on me. I do worry about cooking alone and making cups of tea etc but it’s not something I stop doing, that just wouldn’t be feasible.

My friend’s wife has got epilepsy, she had a tonic clonic seizure about once a month and it did impact on her life in some ways but she was never awarded PIP, not even for mobility. After one seizure she sadly hurt her back quite badly (and chronically) but she was still able to work full time and go out with her friends etc, she didn’t have any walking aids and it didn’t affect how far she could walk or anything like that, she still lived her life as she always had, she just suffered with pain. However, she applied to have her PIP reviewed and based on the back injury she then got awarded high rate for both mobility and daily living. I suppose that’s just one example where epilepsy alone isn’t seen as a reason to need PIP, but throw in another diagnosis on top and it’s a different story.

@ViaRia01
It sounds as though this is all very new to you. We are 2 years down the line from diagnosis.
If he is used to driving then it will be a big change for you all we had a 2nd car that we had to sell.
After a few months we got used to me being the only driver and relying on public transport.
Has he applied to get his prescriptions for free also?
My husband has a disabled rail card.
Have a look at your local area re bus passes etc but a lot of them don't start till 9:30am.
He works from home mostly so didn't apply for the access to work grant

@MoserRothOrangeandAlmond thanks for your message. He actually has an exemption for his prescriptions already due to another health condition.
I’ll suggest he looks into getting a disabled railcard. I’ve not heard about an access to work grant so I’ll look into that too, thank you.

He absolutely hates not being able to drive but he does understand he needs to get this under control. I think he’s hoping that at some point he will be able to drive again (if/ when seizure free for over a year). Is that likely, do you think?

It's took about a year to get his medications sorted. My husbands seizures are quite violent and dislocates his shoulder each time so had x2 operations as he had a fracture with dislocation last time. He has very small focal awareness seizure every few months at the moment and hoping get those sorted, neurologist is happy for him to drive but my husband is more cautious and doesn't at the moment.

@MoserRothOrangeandAlmond my understanding was that the advise would be to have 12 months seizure free before driving again. Is there a reason why this isn’t the case with your husband? I’m just trying to understand as my husband would be quite relieved to learn if this is sometimes not the case. Is it because he is able to know in advance before the seizure starts? Or because it is very small and he remains aware throughout the seizure?

My husband has an appointment next week and I’m planning to join him so that I can understand and perhaps also ask questions as well as (although it is his medical information) I really do feel that this sort of condition affects the whole family in a way. It is so scary to witness. I’m trying to understand much more about the condition and how I might be able to support him more, apart from just taking on the driving for now.

We believe they are focal aware seizures that last a millisecond the doctor doesn't think so.
He doesn't loose consciousness and continues with what he is doing throughout the duration he sometimes doesn't understand what I say and says what? This only occurs if he hasn't slept great and only on an evening.
We're just being more cautious!

It does affect the whole family! My daughter has been alone twice with him at the age of 3 and 4 having seizures the worry is always there xxx