Disabilities.

@sben hi @sben my names Emily and I too have Epilepsy and seizures so i do know how hars it is I really do. A lot of people don't understand the things we go through due to our disabilities not unless they have it themselves in my opinion. I have falls too sometimes and that too is a bit of safety I have to have someone wirh me all the time and I hate it bjt such as it is. I fi d extremely difficult to cope sometimes. So I really understand what your going through. @pooleemily29 🙂

Hi @sben - I agree with Ostia in that having someone to advocate for you would be a good way to go. Perhaps try this charity, which I remember helped one of our members, making a real difference. I don't think they are in all areas, so you'd need to check: https://www.voiceability.org/

Other advocates to try: https://www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

Perhaps we can also help here about claiming PIP as this is about epilepsy & your safety. The following is from a Benefits and Work Guide about PIP:

''Safety and supervision
Until now, the DWP have argued that a claimant can only score points for being unsafe if harm is likely to occur on more than 50% of the occasions on which they attempt an activity.

So a claimant with epilepsy who has seizures twice a week would not get points for needing
supervision when cooking. This is because they could not show that it is ‘more likely than not’ that they will have a seizure on any given occasion when they prepare food.

However, on 9th March 2017, in CPIP/1599/2016 a panel of Upper Tribunal judges held that the DWP were wrong.

Instead, they said, the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.

So, if there is a real possibility that a claimant with epilepsy might have a seizure whilst cooking then they reasonably require supervision for this activity, even though the chances of a seizure happening on any specific occasion may be quite small.

They should score points for needing supervision even if they don’t actually have anyone to provide it.

But the Upper Tribunal went even further than this.

They ruled that where a claimant is at risk all the time, then they may also be at risk when carrying out PIP activities that do not carry any additional likelihood of harm.

So, a claimant may not be at any additional risk of harm if they have a seizure when using the toilet or taking medication, for example. But, because they are at risk whatever they are doing, then we would argue that they still reasonably require supervision during these activities, because they cannot do them safely without supervision.''

The important part is that the severity of your epilepsy matters. From what you've said, then your safety is at risk.

I'm sorry this is a lot to read, but if you're able to find someone to help you, please make them aware of the above. With epilepsy, depending on the severity, then you simply don't have to show that you are likely to suffer harm at least 50% of the time.

Please come back with any questions,

It's up to you to prove this to PIP. You can't leave them any space to make their own assumptions.

Make a diary over a week or a month, noting how many seizures you're getting, how long they last and in what circumstances. That should be good evidence to back up your case.