Reassessment Advice — Scope | Disability forum
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Reassessment Advice

Julia21
Julia21 Community member Posts: 14 Connected
Hi - my son's (19) PIP expires next March 2025.  Couple of questions:
1. When is he likely to receive the reassessment form? 
2. Can he just re-enter info from first application? 
3. He's recently diagnosed with epilepsy and also suffers with severe anxiety (which can be a trigger).  If he takes medication to try and control seizures will that cancel any entitlement? He still has breakthrough seizures but not as often as before.  I've heard they want you to be affected most of the week or a certain percentage of the time and not sure if he'll make the grade. He's been told recently by the doctor and dvla he can't apply to learn to drive given he's still having seizures and a risk to himself and others. 
4. When he does have breakthroughs they're far worse than before. Found him on the floor, split head etc. He also has them in his sleep which puts him at higher risk of SUDEP. 
5. He had to give up degree studies given impact on his memory and processing.  He's just not able to learn as used to - bit devastating tbh as he was very academic
6. He's struggling to find a job as he can have some good days but also some very bad ones.  It's also taking a toll on his mental health. 
7. He's also scared to move out given need for me (mum) to be on hand for support etc. 
Any advice appreciated. Thanks. 

Comments

  • woodbine
    woodbine Community member Posts: 11,329 Disability Gamechanger
    They will probably start the review process around Sept. this year but it can take upto 12 months, his existing claim will remain in payment until a new decision is made.
    A review should always be treated like a new application.
    Taking meds will not affect entitlement.
    Apart from PIP is he currently claiming any other benefits?
    2024 The year of the general election...the time for change is coming 💡

  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    Hi @Julia21 - 1. currently people are getting their PIP review forms about 8 months before their current award expires.
    2. even if there hasn't been any change since his PIP claim, it's still best to complete the review form as if it was his first one, so with as much detail. Ideally there should be a couple of recent, detailed examples as to the difficulty he faces for each applicable descriptor given, i.e. when did it happen, where, what happened, did anyone see this, & were there any consequences to attempting/doing an activity?

    Say if he can/can't do each applicable activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes him much longer than someone without his disabilities.

    3. the fact he's taking medication for his epilepsy will not jeopardise his claim. With PIP it is indeed about how you are the majority of the time, but, depending on the affect his epilepsy has on him, then he's potentially at risk of having a seizure at any time, which you've illustrated with 

    4. so the greater the risk he could harm himself, then the more likely the affects of this mean the 'majority of the time' (50% of his days) wouldn't apply. The risk of SUDEP, I'm unsure about as night time isn't considered with PIP, but if he has a seizure during the night, does this affect him the next day?

    5. 6. & 7. have a read through claiming PIP on this website, which I hope will help illustrate where he may need help & support: https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/how-to-fill-in-the-pip-form/

    The review form is a lot smaller, so with less space to give details. You can always add extra pages at the end, just ensure his name & National Insurance number is on each of these pages. If continuing a question, make sure which question it's continued from is indicated. Hope some of this helps.

  • woodbine
    woodbine Community member Posts: 11,329 Disability Gamechanger
    Many people who have grand Mal seizures can be at risk of "SUDEP" at any time of day or night, luckily I have only come close once.
    2024 The year of the general election...the time for change is coming 💡

  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    I was thinking from what you'd said, & what I'd read (https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy )  that SUDEP often happens at night, but I'd be guided by woodbine on this.

  • Julia21
    Julia21 Community member Posts: 14 Connected
    Thank you @woodbine and @chiarieds - this info and links are very helpful.
    Son only claims PIP currently.  He dropped out of Uni given he couldn't live without support. He has good days and bad. He's not claimed for any benefits - am not sure what, if any, he's entitled to.  I have always worked so it's a whole new world to me and, as he was only diagnosed 2 years ago, it's not familiar territory re: rights and what he might be eligible for etc.
    He talks about trying to do A levels or online learning - ideally, he'd love to get a degree so he might have the opportunity to work from home, even if just part-time, but make a living and start to build a future for himself. 
    Currently, he's a bit in limbo though and a little job would help him socialise and build his confidence but it's hard given his breakthroughs. 

  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    Hi again @Julia21 - I don't know if this will be appropriate, but Scope have some programmes which may enable your son to get into some kind of work: https://www.scope.org.uk/employment-services/
    Also I'd definitely try this benefit calculator: https://benefits-calculator.turn2us.org.uk/survey/1/b82d7ea4-98f2-4b53-be51-dff93df0bcd2  to see about Universal Credit

  • poppy123456
    poppy123456 Community member Posts: 52,446 Disability Gamechanger
    If he's no longer a student and doesn't work then he will be able to claim UC in his own right. Assuming he doesn't have capital of more than £16,000. He will need to report his health condition and provide fit notes. This will start the work capability assessment process off. There's some information here. https://www.gov.uk/government/publications/universal-credit-if-you-have-a-disability-or-health-condition-quick-guide/universal-credit-if-you-have-a-disability-or-health-condition
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Nick_9_
    Nick_9_ Community member Posts: 7 Listener
    Hi,  I thought I'd share my experience. I have epilepsy and these 95% of the them happen only when I'm asleep or just about to fall asleep. I am at an increased risk and SUDEP and this is something I just have to get used to. Quite a few nights a week i sleep for no more than 2 hours at a time and even with medication i can still have 'funny turns' several times a night (mini seizures is the only way i can describe them) anyway I'm lucky enough to be self employed and work (almost) full time and I claim PIP and my wife claims Carers as she assists me greatly with dressing and organising for me when I'm bad. Following bad nights i can barely manage to get dressed by myself and have the usual muscle aches and fatigue and memory loss. My job does allow me to work adhoc some of the time desk based at any time so this could be the middle of the night eg. and when i feel i have the energy, but i have to cover some usual 9-5 days as well to speak with clients - point is that you can work 'full time' and still be eligible for PIP. I explained the working patterns during my assessment and explained that i simply work more when i can. No one is expected to be laid up in bed 24/7! We are allowed a life :-)

    Just be clear and calm about how your sons epilepsy effects him daily and include the anxiety side
    effects as well. Should he be fortunate enough to start to look for work or get back into education, this shouldn't be seen as a negative factor for PIP as people aren't expected to be out of work for their entire lives plus working can be very fulfilling and ease stress and anxiety. I have a young family and I've had my down moments believe me, thinking i might go to bed and never wake up, but working is a great distraction - explain all this in the assessment and best of luck. In terms of jobs/careers there's never been more opportunities to now work from home with a PC either doing admin based or call centres jobs. There are very flexible contracts about which would allow your son to cover 'X' amount of hours at any time. 
  • Hannah_Scope
    Hannah_Scope Posts: 7,316 Disability Gamechanger
    Thank you for sharing your experience with us @nick_9_ <3

    I can see the community have all come out to help @julia21 I wanted to comment and welcome you :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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