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

PIP is not means tested.

I work full time and get both enhanced rates of PIP. It's not means tested.

As pp, the answer is no. People can work, and claim PIP.

It's not means tested no.
Its how your husbands epilepsy affects him in his day to day life for example does he need help with washing, dressing, making meals etc.
Can he travel on public transport etc?
With epilepsy affecting everyone differently it's hard to say if he is eligible.
For example my husband has epilepsy and can do most things himself and for the past year he has been mostly controlled and works from home etc. other people cannot do these things.

To add to what pp have said

When looking at whether he can do the pip activities (cooking, eating, washing, dressing, going out in his own) it's important to think about whether he can do them safely

So for instance someone who has seizures where they collapse and doesn't get any warning of the seizure would be considered to be unable to go out on their own safely for pip purposes (because they might collapse while crossing a busy road for instance). And they would be considered unable to go out on their own even if in practice they go out on their own all the time.

It can be hard to make sense of the pip rules for epilepsy and it might be worth getting some specialist advice.

The turn2us website has information on pip specific for different health conditions, but I don't know if it includes epilepsy

I can clear up epilepsy in PIP for you.

It’s about safety. So we look at frequency of seizure, type of seizure, how long they last, warning beforehand.

The relevant activities that apply for this condition are one, four and eleven only.

The relevant activities that apply for this condition are one, four and eleven only.

That isn’t the case. This benefits and work page explains why some other activities are also relevant to some with epilepsy.

I can categorically assure you that it’s not considered when it comes to eating or toileting because of the time taken to do these things. In the absence of status epilepticus, it doesn’t count.

Same with dressing. It doesn’t count without SE.
Communication, reading and budgeting are the same.

I literally do this for a living, you will not find an epilepsy claim that scores for those activities without SE.

As for engaging and mobilising, they would need an anxiety diagnosis and a diagnosed condition affecting mobility. So whilst seizures may trigger the anxiety, you need that secondary diagnosis.

Seizures for the vast, vast majority of people last less than 10 minutes and any post-ictal confusion resolves gradually within an hour or two. This can be a bit longer, but it is not the majority of the time. Therefore all this about “you may need help with eating while recovering from a seizure” is irrelevant - it’s expected that they’ll just wait until they are recovered.

As such, the only concerns are related to safety (cooking, bathing, going out).

In the absence of status epilepticus, it doesn’t count.
I literally do this for a living, you will not find an epilepsy claim that scores for those activities without SE.

I can categorically tell you, you are wrong. I also do this day in, day out. Sadly, this is exactly why some have to appeal for the correct award.

they would need an anxiety diagnosis

No diagnosis is required. PIP is based no needs, not diagnosis.

is irrelevant - it’s expected that they’ll just wait until they are recovered.

Except, for some, they have multiple seizures a day. So for some it is very much relevant.

You do this job too? What job is it you do?

If you do the same job as me, you’ll know that there are pre-prepared scripts under all of the irrelevant activities to discount epilepsy, that are then entered into the form when someone talks about choking or risk in the toilet.

I support parents who have disabled children. That includes PIP claims.

This isn’t the first thread you have posted incorrect information on. For example, on the thread you started you posted “with eating…how much you eat from a meal are not something we look at.” when case law says otherwise in some circumstances. For example, SO v Secretary of State for Work and Pensions (PIP): [2023] UKUT 56 (AAC) and TK v Secretary of State for Work and Pensions (PIP): [2020] UKUT 22 (AAC). The former about overeating and the latter looking at someone with CF needing prompting to eat a sufficient quantity.

Great, so you have no direct insight into the actual decision making process or what HCPs doing the job are told to consider/disregard in the training we get directly from the DWP.

If I was working at the moment I’d type verbatim what those pre-prepared messages say, so you could see that this comes directly from the DWP.

The website you linked - I had a glance at the depression guide. It states:

Due to poor concentration, you may take wrong turns when walking/driving or miss your stop when on public transport unless you have someone to prompt you about this.

This isn’t correct. It’s ok for people to get lost - it happens. What matters is how they deal with it. If someone takes a wrong turn and has a full panic attack, screaming and crying, then that’s to be noted.
If they go on Maps and reroute themselves or phone their husband for help, that’s a normal and sensible action.

Quantity of food taken is not considered except in cases such as Prader-Willi syndrome or very well documented ED situations. I can see why the CF case you quote also warranted prompting as the person was probably losing weight and had lots of relevant input. But for the average person, it’s not as simple as “I am depressed and have no appetite”. There should be documented weight loss, dietetic input, prescribed supplements (Ensure and similar). Without that, it’s a no.

Even if someone has a bit of toast and a biscuit, or just one meal a day…that’s adequate.

I don’t make the rules but I do need to follow them at work. The DWP audit a selection of all submitted reports and will send it right back to you if you’ve been unduly lenient.

Sitting down to get dressed, having no teeth and being unable to chew properly, using a sat nav to get to places, language barriers, being too depressed to talk to people…all things that people regularly think are considered but aren’t.

Everything I have posted is correct. Your posts are why so many have to appeal.

For the quantity of food, the problem is you made a blanket statement which is incorrect. It doesn’t apply to all, but it does to some, and you saying it isn’t something you look at is incorrect. This is similar to the blanket statement you made on this thread. Other activities won’t be relevant to all other claimants with epilepsy, but they are for some.

I didn’t link to the benefits and work depression guide. I haven’t read it so can’t comment on it. I was talking about the information on the page I linked to about epilepsy. That is correct.

Although, if a person without teeth requires dentures in order to be able to take nutrition, that can count as an aid or appliance - see CB v Secretary of State for Work and Pensions (PIP): [2022] UKUT 100 (AAC). And someone too depressed to talk to others may well score points under activity 9.

You are doing an excellent job of demonstrating why appeal success rates are so high. It's not your fault you're given wrong information in your training materials but it is deeply concerning

Honestly it’s so frustrating doing this.

You can fire in all the links to upper tribunal chambers, but these are not used at first level assessments. Not in a million years would dentures be classed as an aid (and not at the first tier tribunal either, it seems). Likewise with depression in activity 9. It is a simple sentence of “Depression is not considered” that is entered by us. Anxiety, yes. Depression, no.

FWIW, it’s abundantly clear that the ground level assessment is done one way, the first tier tribunal another and subsequent tribunals differently again. I can’t comment on why that is, though I’m sure we all have an idea.

I think the tribunals do work differently. Some of the cases posted here are completely against what we do. If I awardee use of dentures as an aid, the DWP would flag it immediately and my line manager would probably think I’d lost my mind.

And this is the problem. The fact so many decisions are not lawful - decisions made by DWP should not be at odds with case law and they should not be discounting an activity based solely on the diagnosis - PIP is based on needs/function, not diagnosis. It is why so many are successful when they appeal.

No, it isn’t your fault your training is poor, but it doesn’t help claimants for incorrect information (when considering the law) to be posted online.

Yes, the tribunals are judge led and apply the law.
It's really not great that you think you'd be in trouble with your supervisor for applying the law.
I think there are journalists and charities who would love to see the scripts you are directed to use.
The work you do is so important to the lives of disabled people but the people doing it are given the wrong training and the wrong information

As someone with epilepsy I have found this really interesting to read.

I get high rate for mobility but scored Zero points on the Daily Living score.

I belong to an online support group for people with epilepsy and generally it’s very rare that people are awarded PIP unless they go to appeal/tribunal.

I guess as a previous poster said, for the majority of people having seizures doesn’t impact your daily life on a day to day basis unless your epilepsy is very severe. For example, when I have a seizure I am not ‘with it’ for a few hours afterwards and need help to do things, but outside of that post-seizure phase my life is no different to anyone else in terms of how independent I am.

That’s exactly the result I’d expect - enhanced for Mobility (full points in Act 11) and no award in daily living (presumably you got a few points in Act 1 and 4 but not enough to meet the threshold).

It can happen where people get zero in DL. Usually if they have a reliable warning of at least a minute or so (therefore long enough to turn the cooker off or pull the plug out the bath). This isn’t enough of a warning when outdoors, hence the award in Mobility.

Your post-seizure confusion/lethargy is a few hours, then you get back to yourself again. So overall, for the majority of the time you are functioning. All the mention of points for eating, going to the toilet, reading etc is just not going to happen at the first assessment level.

This is pretty much what I was saying on the thread last night, so I’m glad a real life claimant came along and gave their real story.

Again, though, you're failing to grasp the concerns we raised with you last night.
The awards made at tribunal are, for the most part, legally correct. It appears you are being directed and taught to make awards that are not legally correct. This is a really significant systemic problem in how the pip system works.
You seem to think it is correct and appropriate for people assessing pip claims to use a set of guidance which does not follow the law. It isn't. Upper tribunal and court of appeal decisions are the law. If you're being encouraged to ignore that, this is a really bad state of affairs.

I really am serious that if you have an interest in protecting the rights of citizens in the UK to be governed by law, you should look into anonymous and safe ways to leak the scripts you use to media like the Guardian or to a disability charity like Disability Rights UK

Thanks for all your replies (even if this seems to have opened a can of worms!)

I think the main financial change to us would be him being unable to drive and need to take public transport. I have seen that there are bus/ rail passes available for him to travel at a subsidised rate so we’ll look into that.

I think, we PP eluded to, my husband’s safety is compromised when out of the home/ workplace (mobility) but generally speaking he loves a ‘normal’ life in terms of self care, socialising, working (daily living).

it’s very rare that people are awarded PIP unless they go to appeal/tribunal.

Too many do have to appeal, and reading this thread you can see why, but if you look at the government’s statistics, it isn’t ’very rare’ for claimants with epilepsy as their main disabling condition to be awarded PIP. In 2023, 54% were awarded (the overall average for all claimants was 53%). It isn’t unusual to get the DL component either. In 2023, 34% were awarded enhanced DL and 29% standard DL.

That’s my problem, being out alone.

I used to have the typical tonic clonic seizures but the last 4 events I’ve had have all been focal seizures but each one has been in the form of status epilepticus. On all four of these occasions my focal seizures (with impaired awareness) occur back to back and last anywhere between 8-36 hours. So yes, I cannot go anywhere alone because of the danger I’d be in if one occurred whilst I was out about doing my shopping etc.

Quoting those statistics I would stand by my opinion (and experience) that it’s rare to get PIP just because you have epilepsy.

Stating that of 29% and 34% of applicants are being awarded PIP for having epilepsy isn’t exactly a high proportion is it 😬