PIP — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

PIP

Nickinors
Nickinors Member Posts: 3 Listener
edited April 2019 in PIP, DLA, and AA
Hi I have photosensitive epilepsy. Ive had my PIP assessment I know that the DWP didnt approach my GP or former epilepsy specialist for medical history. I no longer attend clinic and I am on medication for my epilepsy, which is mostly controlled, so I have no current evidence to provide. I wrote a letter to my GP, requesting information that I have the condition, but they sent it back saying that the DWP would approach themselves if they required it. They didnt. There is no consistency with my seizures, they dont happen often, but they can happen anytime, without warning but the real problem which is being overlooked by the DWP is the photosensitivity. The photosensitivity  is the trigger for the epilepsy which means, no driving, no computers, video games, discos, concerts, shift work, etc. I have to avoid situations that could put me in danger.
The PIP form is not suitable for non visable disabilities, and because I do not fall into their yes/no tick box, they have basically disregarded my condition and how it affects me and my daily life.
I am now waiting on a date to go to tribunal and I need all the help I can get. How can I prove that my condition is a disability,  and make them see that the PIP form is not diverse enough?

Comments

  • venus
    venus Member Posts: 6 Listener
    Hi the whole process for pip is dreadful, i suffer with anxiety and depression, which is different from your condition.i had the same issue proving that i suffer from this as my condition is up and down as well. i battle with these people for years and i went all the way to the upper tribanal, i final won and my appeal was granted. you have to persevere. if you have a good doctor get them to write a letter on your behalf, you might have to pay. if you have any friends, or family members that can wirte a letter backing up your condition would be good also. what stage are you at with this. please keep going with this i know it hard, if you wish to get back to me i will respond
  • twonker
    twonker Posts: 617 Member
    Nickinors said:
    Hi I have photosensitive epilepsy. Ive had my PIP assessment I know that the DWP didnt approach my GP or former epilepsy specialist for medical history. I no longer attend clinic and I am on medication for my epilepsy, which is mostly controlled, so I have no current evidence to provide. I wrote a letter to my GP, requesting information that I have the condition, but they sent it back saying that the DWP would approach themselves if they required it. They didnt. There is no consistency with my seizures, they dont happen often, but they can happen anytime, without warning but the real problem which is being overlooked by the DWP is the photosensitivity. The photosensitivity  is the trigger for the epilepsy which means, no driving, no computers, video games, discos, concerts, shift work, etc. I have to avoid situations that could put me in danger.
    The PIP form is not suitable for non visable disabilities, and because I do not fall into their yes/no tick box, they have basically disregarded my condition and how it affects me and my daily life.
    I am now waiting on a date to go to tribunal and I need all the help I can get. How can I prove that my condition is a disability,  and make them see that the PIP form is not diverse enough?

    So your condition is controlled with the help of medication. They don't happen often but when they do there is no warning. 

    For PIP to apply the descriptors have to be treated that they are met for at least 50% of the time.
    The issues that you say you have to avoid have nothing to do with PIP.

  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger

    My daughter has epilepsy and is ‘fortunate’ - if that is the correct word - that it is controlled by medication so it has a minimal impact on her day to day living. 

    As @twanker says it seems that the things that your epilepsy prevents you from doing aren’t those that are covered within the PIP descriptors - washing, dressing, cooking, going to the toilet etc.

    I’d advise looking at the descriptors closely to see which apply…search online for DWP + PIP + descriptors…

    Good luck!


  • Nickinors
    Nickinors Member Posts: 3 Listener
    I was told to apply for PIP by the jobcentre. It would appear that I don't qualify for DLA or any other disability benefit. Putting in a claim for PIP was my only option. Unfortunately, there doesnt seem to be a category that I fall into, and as has been mentioned, the descriptors do not apply to me (frustratingly enough).
    Any help/ guidance on how to approach the tribunal and suggestions on appropriate types of evidence would be welcomed.
    Thanks 
  • venus
    venus Member Posts: 6 Listener
    Hi
    try your doctor again, try to see a understanding doctor or speak to the receptionist and say you want a letter from your doctor explain your condition and the medication you are on. you may be charged for this but it your right and the doctor should do this. try to get letter from friends or family members who has seen how your conition affects you. you need to gather your own evidence. think about how your condition affects your daily life, your day to day things cooking perparing meals, washing, socialise, safety around the house, other side the house, do you need support.
  • SaraC_Scope
    SaraC_Scope Scope Navigate service Posts: 33 Courageous
    Hi

    Does your epilepsy mean you have to have someone with you most or all of the time in case of seizures?   Also do you have to be taken places because you are unable to drive or travel alone on public transport?  If you can evidence this by your family or friends or GP, this may support your appeal.

    I have epilepsy and CP and my mum had to use my worse epilepsy days when she applied for DLA 25 years ago.

    I have since moved onto PIP but think it was the fact my CP hinders my day to day activity. 

    Best wishes

    Sara
  • twonker
    twonker Posts: 617 Member
    ilovecats said:

    :


     If someone can evidence that they have seizures that do not have a useful warning, despite taking medication, that put their safety in danger, then they should score 1C, 4C and 11F
    Based on that principle of not having any warning that would put their safety in danger they should be awarded those descriptors.

    Off the subject, so presumably any of our armed forces when put in harms way and not having any warning of being attacked would certainly put them in danger. Should not all of those be offered benefits for that reason?
    Just asking!
  • wilko
    wilko Member Posts: 2,413 Disability Gamechanger
    As the previous post states we could all claim as everyday we put our lives in danger with out knowing. PIP is being looked up on as a benefit to try and claim to get an award to claim or get entitled to other benefits. Finding out or hearing about others who have claimed PIP but do not know the full details and put a claim in their selves and when rejected kick off when truthfully they never would have meet the PIP descriptors. Just trying to get something for nothing.
  • Nickinors
    Nickinors Member Posts: 3 Listener
    ilovecats said:
    twonker said:
    ilovecats said:

    I don't drive because I can't, not because I don't want to. There is a difference. Photosensitivity is the condition that causes the triggers that result in epileptic seizures. I would love to drive, but I would he risking my life and that of others by doing so.i dont think that wise or clever. I would be a liability on the roads and I for one will not take part in something that I cannot control


     If someone can evidence that they have seizures that do not have a useful warning, despite taking medication, that put their safety in danger, then they should score 1C, 4C and 11F
    Based on that principle of not having any warning that would put their safety in danger they should be awarded those descriptors.

    Off the subject, so presumably any of our armed forces when put in harms way and not having any warning of being attacked would certainly put them in danger. Should not all of those be offered benefits for that reason?
    Just asking!
    I don’t set the criteria, I just followed it. 

    There is is an element of variability so if someone says they are driving because they’ve been seizure free for x amount of years then they won’t score

  • twonker
    twonker Posts: 617 Member
    I don’t set the criteria, I just followed it. 

    How many actually said that in trying to avoid being hung over the years?

    This is where more common sense should be in play and not rigid rules. Everybody is different in how they react to the same thing in different ways. How illnesses and a disability effects everybody differently.

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.