PIP and Epilepsy

mac1976

Yes I go to the Walton centre in Liverpool. I don’t know who I’m going to see yet. I’m there on the 14th nov but my form has to be with them on the 8th. I just hope I’ve filled the form in correctly. I’ve just said how it is I my own words. 
How I am after it happens
I’ve said that I need to keep myself as safe as I possibly can. 
Ive also put that I can’t tell you when it will happen and where as I don’t know myself. I’ve got no control over that. 
Ive mentioned the triedness the headaches loss of bladder control 
how I feel after a seizure and how long it takes to feel okay 
I’ve used the sheet at the back of the form to explain it in more detail  on how it is in my own words. 
I have said I’m not very good at putting pen to paper. I would exsplain it better face to face. 
Just hope it doesn’t look like I’m waffling on and Making it sound worse than it is. 
Ive said I do have some good days but still have a headache and feel tired. 

cristobal

@mac1976 - before I completed my form I kept a diary - just notes on a sheet of A4.

This worked quite well for me because I had a clearer picture of how my condition affected me.

Perhaps you could keep a note of your seizures and how these affects you (what you were doing when they happened, was it unsafe etc) and incontinence issues. This might help you to complete the form?

mac1976

I’m going to send a date sheet with when I’ve had them. I will need my husband to help me do it. 

saz11

@mac1976

Hi the reason i asked about you seeing a consultant is that i have read many times on here that your GP can not say how your condition affects you.
Your consultant is much better qualified to do this. 
If you include there details on the form and if DWP need to contact them for any clarification then they can and also tell them about your next appointment.
I too suffer with epilepsy and i just told them exactly how epliepsy affects me daily and gave them my consultants details along with my repeat prescriptions.
I am not saying it easy it not its a very stressful process but there there are sucessful outcomes.

mac1976

The receptionist at the doctors gave me a fact sheet that includes my perception list. I just feel that all I’m going on about is my epilepsy. I will include on the form that I’ve got a appointment at the Walton centre and which date. I can’t give them a name as I’m not sure who I will see on that day. I just don’t want them to think I’m pulling a fast one. I’m not getting my hopes up what will be will be. 

mac1976

I have included the triedness and headaches. I’m using codine now as ibuprofen and paracetamol aren’t touching it. I do have some good days it’s just I can’t tell if I’m going to have a fit becouse I don’t know myself. As you will know that. I’ve included my safety at the end of the day I need to keep myself as safe as much as possible the only way it effects me day to day is the triedness and headaches plus the cooking and bathing. So don’t think I will get it for that anyway 

poppy123456

Future appointment letters/dates are not classed as evidence because it doesn't tell them anything about how your conditions affect you.

mac1976

I will just have to send the form back without then and see what happens. I will speak to the consultant and see if he can send me something for when I go to the assessment. I’m just having a lot of second thoughts about it. 

poppy123456

Do you have any letters from Consultant appointments that you've had in the past? When myself and my daughter has appointments i get sent a copy of the letter that's sent to our GP, then i keep all those letter to use as evidence.

chiarieds

@mac1976 I only had my GP's supportive letter, as he knew me well, but as he'd been on holiday, I didn't get it in time to send off with my PIP form. I took it in for my assessment.....so yes, any additional medical evidence you may get, take with you to the assessment.

It sounds like you've filled in your PIP form very well btw. That's what you need.....just describe how you're affected & the safety aspect.

saz11

@mac1976

Tell them about your appointment if i remember it does ask if you have any upcoming appointments . No its not evidence but giving them as much info as possible gives them a better understanding of what going on and that you are attending appointments with a epilepsy consultant. At your appointment ask for a copy of the letter covering that appointment and what was discussed and any future treatment which  you can take to your f2f. If at your f2f they do not accept the letter forward a copy to DWP with your NI number on it with a quick explanation and follow up with a call to make sure they have received it and scanned into there system. Anytime i have phoned i have always found them very helpful.

Epilepsy does affect each person differently some people are able to manage it with meds and live a relatively straightforward life but others unfortunately cannot get the condition under control and it impacts on nearly everything you do.

Safety is my number one priority as i have suffered some very serious injuries due to sezuires and i have to minimize risk were i can.

It can be quite difficult for people to understand the impact epilepsy has on you. You can only go and be honest with them and explain it how it is thats all you can do. You not lying about having epilepsy the evidence will be there for them to view if they wish to do so and request it. You just have to tell them how having epilepsy impacts on your daily life and anything you have had to put in place to keep you safe. 

Also let them know if your medication causes you any side effects.

poppy123456

Advising that they request evidence if they need it is incorrect, sorry. They very rarely contact anyone for any evidence. The onus is on the claimant to prove they qualify.

Giving 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you is also extremely useful.

saz11

@mac1976

Just a few things to go over and ask yourself.
Does epilepsy prevent you
from:
Going out alone....do you always need someone with you for safety reasons.

Can you cook a full meal with a cooker on your own. Again safety reasons i.e.have you taken seizures when cooking alone.

Can you prepare your food on your own...has doing this caused any injuries to you while you carry this out......the use of sharp utensils etc.

Can you use a microwave to cook full meal or just to heat up a ready meal.....are you able to remove hot food and liquids from a microwave without risk.

Can you bathe and shower on you own.....or do you alawys have to have someone with you for safety....have you have a seizure whilst doing this when on your own.

Have you substained any injuries as a result of seizures

How long does it take for you to recover after a seizure, how many do you suffer weekly.

Does epliepsy cause you to feel down or depressed.....what does it stop you from doing i.e. hobbies....being around people and family. Do you isolate yourself , are your fearful of having a seizure all the time. 

There are lots of things you wouldn't necessarily think would be relevant but they are so i thought i would give you a few things to think about.. These things may not apply to you but hopefully it gives you a rough idea of some of the things they question. 

mac1976

Thank you everyone for listening to me. I’ve been so stressed since I got the letter to apply for pip. My DLA was a life time award. Do to think that could just be taken away over night has worried me. It’s all I can think about at the minute.

saz11

@poppy123456

HI Poppy just to clarify my understanding of pip is not about providing evidence of you health condition its about how it affects you which i believe is the evidence that would be expected to be provided by a claimant. I was trying to reassure mac1976 that their health condition is not in question the evidence of their diagnosis is there if the DWP wish to review. If i am wrong in saying that please could you have my posts removed. Thank you

mac1976

Please don’t ask for your post to be removed. You have been most helpful to me when I needed it and appreciate it very much. 

saz11

@mac1976 

Thank you. I have been advised i have given you the wrong information which i apologise for that it wss not my intention. I hope things get better for you and hopefully you can put this behind you very soon and get on with your life.

mac1976

I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 

poppy123456

saz11 said:

@poppy123456

HI Poppy just to clarify my understanding of pip is not about providing evidence of you health condition its about how it affects you which i believe is the evidence that would be expected to be provided by a claimant. I was trying to reassure mac1976 that their health condition is not in question the evidence of their diagnosis is there if the DWP wish to review. If i am wrong in saying that please could you have my posts removed. Thank you

You are correct in saying that it's not about the health condition, it's how it affects you. It's also not about a diagnosis.

Lots of people assume that DWP and the health assessment providers will contact medical professionals for evidence but it very rarely happens.

I'm not authorised to remove any posts because i'm not admin, i'm a Community Champion here. You have been very helpful here and i thank you for that but i just didn't want others reading this and thinking that DWP contact medical professionals, which is why i corrected that.

poppy123456

mac1976 said:

I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 

Why do you have to keep yourself safe? You need to spell it out to them (so to speak) I know what epilepsy is because i have it myself, although i've been seizure free for many years thankfully.

For example.. do you need someone with you when you shower/bath? If so then why do you need someone with you? What happened the last time you attempted to bath alone?

When you go out do you go alone or do you need someone with you when you go? If you need someone with you why do you need someone? Have you ever been out alone or been left alone while out? If so what happened? These are the sort of things that you need to put on the forms. Use extra paper too because there's never enough of room to put all the information on the forms. Make sure you add you NI number and name to everything you send.