PIP and Epilepsy

Yael

Hi!
starting to fill out my pip form after being moved over from dla. I have epilepsy and have been doing some research but does anyone have any good links or advice around some of the questions as I’m really worried I’m not getting the safety factor across, I don’t get warnings so need supervision 24/7 thank u

steve51

Hi @Yael

Good Evening & Welcome!!!!!

We have got some info on our community/site that should be very beneficial for you.

I will post the link below for you. 

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https://www.scope.org.uk/support/disabled-people/benefits/pip&index_url=https://www.scope.org.uk/support/disabled-people/benefits/pip&auth=OdCmUepX8Eu01lD6Q10Fhg&profile=_default&rank=1&query=Pip

Please please have a good look through it & please let me know if you need any further details ?????????? 

Yael

Thanks, I have done lots of research on pip but wanted some specific help on epilepsy as it differs so much from month to month. 

thespiceman

Hello @Yael   Pleased to meet you welcome.

Thank you for joining and sharing.

I am one of the team of community champions who guide, inform and advise new members.

Citizens Advice have a question by question guide to filling out a PIP claim form on their website.  Which you might find useful.

With the PIP form you get a booklet to help and guide you.

I understand you need the right information to fill in the form. I would advise also speak to CAB. 

One suggestion I would do is make a draft copy of answers on paper first before filling it in.. After making an appointment seek the help of CAB. They will with your draft answers help to fill in the form.

Have expertise and knowledge.

We are a friendly community. Supportive, care and share.

Please ask if we can advise on anything. Some one from our community or a member of our team will be in touch.

Please take care.

@thespiceman

Yael

Thank you for your advise, it was more around the 50% rule and the new legislation that came in. I will try and see cab but our local centre are very understaffed and it’s hard to get an appointment before the pip form needs to be in!

steve51

Hi @Yael

No probs here's some info on Epilepsy below. 

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https://www.scope.org.uk/Support/Families/Diagnosed/Epilepsy&index_url=https://www.scope.org.uk/Support/Families/Diagnosed/Epilepsy&auth=03cJGGz4LIRLHR22uQiaPQ&profile=_default&rank=1&query=epilepsy

I hope that this is OK?? 

Sam_Alumni

Hi @Yael
Epilepsy Action have some information here and the CAB guide to filling in the PIP forms is really very good.

With a variable condition like epilepsy, you must need help at least 50% (half) of the time to qualify for PIP. This will be considered over a 12-month period, looking back 3 months and forward 9 months.

michfinch

Sam_Scope said:

Hi @Yael
Epilepsy Action have some information here and the CAB guide to filling in the PIP forms is really very good.

With a variable condition like epilepsy, you must need help at least 50% (half) of the time to qualify for PIP. This will be considered over a 12-month period, looking back 3 months and forward 9 months.

michfinch

I’ve had a nightmare so far with PIP. I got my MP involved in the end as I felt Epileptics were so misunderstood. I went years with my Epilepsy well controlled, however, the last 5 years saw me have a near Nervous Breakdown, hospitalised for a week in 2014 and things went downhill from thereon. The memory problems are also very frightening. I sat in front of my usual GP last week, she asked me did I know who she was, put on the spot I couldn’t remember... 

michfinch

I’d honestly say if you have trouble with PIP and you’re Epileptic talk to your local MP’s Office. I have my next PIP assessment I hope in January. It may be you only have 1 or 2 Seizures per year but it is the affect they have on you mentally which I don’t believe PIP Assessors understand. I had just received my Licence back only then to have another attack...

Sam_Alumni

That is great advice @michfinch

It is so tough that so many illnesses and impairments are so misunderstood!

Yadnad

Sam_Scope said:

That is great advice @michfinch

It is so tough that so many illnesses and impairments are so misunderstood!

Sam_Scope said:

That is great advice @michfinch

It is so tough that so many illnesses and impairments are so misunderstood!

My first PIP face to face assessment and report described one of my issues (Advanced Chronic Pancreatitis with Acute Episodes) as nothing more debilitating as constipation!

https://www.nhs.uk/conditions/chronic-pancreatitis/

justg72

Hi Yeal
Epileptic people are the highest numbers been refused PIP. Only 3 out of 5 are been awarded PIP. I have epilepsy and I have been refused PIP even though I have treatment resistant temporal lobe epilepsy. I very rarely will get a warning, most of the times I will drop to floor with no warnings. I have appealed with an MR and are now waiting for a tribunal. My report was full of inaccuracies and many errors from start to finish. I have answered the questions with the safety issue first. I have then thought of the aftermath when I have had a grand mal e.g. I am so tired and confused after it can take hours, sometimes the rest of the day to feel normal again. Are you able to carry out a task in a reliable, repeatably, timely and safe manner? also does your epilepsy affect you more than 50% of the time. I know when I have had a grand mal I can not do the daily tasks because of what I am like following a seizure. I do not use an oven or hobs ever. I do not have a bath anymore because of nearly drowning in it. I do not know about you but mine causes short term memory problems and depression which comes with having temporal lobe epilepsy. I did not get diagnosed until early forties, this has been a total life changer and I have lost all my independence, dignity, job and much more. I am still struggling with coming to terms with my condition and I have lost my social life, as I find it really hard to see friends as I do not go out by myself and I will not meet with people who do not know or understand my condition. I find this too overwhelming and I end up having an increase in seizures. I would think about how you are following a seizure. Hope this helps I didn't want to go on about myself but I was thinking about how it affects me as an example.
Good luck and let us know how you get on.

Yael

Thank you everyone for all your information. I’m going to sit down and write in more detail to some of the questions tomorrow. These are really useful remarks and I really appreciate ur feedback 

justg72

Hi Yael
I have thought of another to do with epilepsy. Epilepsy is an invisible condition, we look fine to many until people witness a seizure and then see the now and after affects of it. When you attend a F2F assessment with an HCP we look okay and well, however if they then had seen you have a seizure and what you are like afterwards I know the points they score would be totally different from not witnessing one. Some people think that after a seizure you are able to just get up and get on with it and we know (epileptics) that this is not the case. I don't know about you but I sleep for hours after one and I do not come around for hours, I also do not talk any sense, I think I am talking normally. I talk mumbled jumbled with nobody been able to understand what I am on about.
Hope this helps and good luck again 

Paul7210

good luck with your claim, bear in mind also they sometimes write to your consultant on your history of epilepsy, this was the case for my wife and Adult Social Care were also involved in our case. The 50% rule still applies where you must require care/supervision at least half the time. If you're uncontrolled and need care then hopefully you'll be ok. It took DWP's 8 weeks to get a report back from our neuro after that things were straight forward and we didn't have to attend an assessment centre.

michfinch

Hi Paul thank you so much. No, I don’t need supervision 50% or more of the time. How is that decided? Yesterday I had 3 Auras and a near Fit, a week ago I woke up in the morning haven bitten my tongue. My Dr, Psychologist (and as you suggest I will contact my Specialist) have already written to PIP ahead of the Appeal. The anxiety is heightening my Epilepsy. As we both know there are different types of Epilepsy as it affects different parts of the brain. The same can be said for people claiming PIP who have physical disabilities, being in a wheelchair or walking just aided with a stick. I hope you understand my point. Best wishes to you and your wife. Michele

Paul7210

Hi Michele, it's crazy and a very unfair system and I understand your point. My wife has seizures or clusters of seizures most days so needs 24 hr care and rescue medication has to be administered as and when required. Here's the points and descriptors which might be of interest, even for us they made it difficult and requested and update care plan and neuro report. https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

michfinch

Thank you Paul. One last Question. Has your Wife always had Epilepsy to the same severity? Thank you, best wishes again, Michele
PS I was almost accused of lying about Epilepsy because I was “able to contact your MP”.... Totally misunderstood as an illness....

Paul7210

She's had it since the age of 7, it is complex with scaring on her left temporal, despite trying all the medications as well as surgery, Vagal Nerve Stimulation and Deep Brain Stimulation it has continued to progress unfortunately it is known as Refractory. She has needed full time care for a number of years and at 47 years menopause is also increasing seizure activity and more especially with clusters. As for people accusing you of lying it just shows how even today there's much mis-understanding of the condition. It's does vary very much from person to person but it is a invisible condition to most people include the DWP's ! good luck anyway and I really hope your seizures are bought under control. Take Care

michfinch

Bless - my Epilepsy has worsened with the Menopause too. Such a complex illness. Good luck too and thank you :-)