PIP, DLA and AA
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Pip and EPILEPSY

Brumboy68Brumboy68 Member Posts: 77 Courageous
Hi I have recently applied for pip April 1 I just wandered if anyone had any experience with the dwp with the illness. I have provided them with plenty of correspondence from hospital discharge letters to consultants letters . I have filled the form truthfully and to the best of my kniwkedge, but it's hard to explain on a form that seizures tonic clinic are a danger to you whatever you are doing. The form is not really designed to take into account safety. I know about the legislation that was made about tasks and risks and safety. But I still think that the form is hard to fill out.



Replies

  • MangyWolfMangyWolf Posts: 40 Member
    Say things like you can have a seizure at any time. Use words like 'fluctuating, random, unpredictable'. Say that it is unsafe for you to do whichever activities apply because on a worst day you can have a seizure within X amount of time of starting that activity. Use your worst days as examples. If you've had a seizure after leaving the house, was it less than 200 / 50 / 20 / 1 metres? Have you had a seizure while travelling on public transport? Do you need to have someone with you to make sure you are safe? Even if you don't get any help yet, help that you would need still counts, and mention that 'I need this help but I cannot get it until I have PIP to pay for it'.
  • Brumboy68Brumboy68 Member Posts: 77 Courageous
    I just explained the situation as it is. I have been in hospital for three months in the last year, due to cluster seizures ( where I can get up to 6 a day for a period of anything up to a week or so). Then I can go sometimes a mohth or two clear without having any. Anyway where I have back to back seizures or most of mine last more than five mins ambulances are normally called if I am at home family know what to do. I generally get rushed to hospital on blue lights because of the danger of status epileptic is which I have had before.  My visits too hospital have occurred from shops pavements buses and even talking to neighbour on a drive. I get no warning. So you see how it's difficult to say how safe you are  to walk ten or fifty metres , or whether you need anyone to help you. Neither would have much good too me. I hope you understand where I am coming from. So many things become a danger stairs bathing cooking ironing. I woukd say I have a high risk.  But you cannot say that you can't bath when you can but like everything in your life it has an element of danger.

  • MangyWolfMangyWolf Posts: 40 Member
    edited April 2020
    If it was me assessing, having a seizure talking to your neighbor should be 8 points for being unable to interact safely for yourself IMO, and that should be 12 points for cannot use public transport at all because of those seizures, so not even looking at all the rest I would already award at least standard daily and higher rate mobility.

    Also likewise with the neighbor thing, the tribunal asked me about my move into social housing where I've been now for 18+ months and 'so have you spoken to / know your neighbor?'. I've been here over 18 months and don't even know her name, and the only interaction I have is she says hi to me when I'm putting my bin out or anything else, and when I try to say hi back my lips move but no words come out (story of my life). This has happened since people tried greeting me when I was at university. I'd imagine people think I'm mute which wouldn't even be too incorrect, I have a lot of hearing loss as well.

  • mikehughescqmikehughescq Member Posts: 6,621 Disability Gamechanger
    Please do a search for PIP and epilepsy on here. There are several long and relevant threads. 
  • woodbinewoodbine Community Co-Production Group Posts: 4,498 Disability Gamechanger
    I have to say that I was treated very fairly when I transfered from DLA to PIP with my epilepsy, @Brumboy68 the assessment which comes next either by phone (or face 2 face, if we get out of this social isolation) will give you ample opportunity to give examples of how you seizures affect your everyday life, I must disagree though as I think the forms give you plenty of opportunity to enlarge on the safety issues.
    One of my favourite phrases is " the risk and constant reallity of seizures" but I have a number of absences every day and grand mal seizures 3 or more times a week.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Brumboy68Brumboy68 Member Posts: 77 Courageous
    Letter arrived today for may 13 phone assessment
  • chiariedschiarieds Community Co-Production Group Posts: 9,181 Disability Gamechanger
  • woodbinewoodbine Community Co-Production Group Posts: 4,498 Disability Gamechanger
    Brumboy68 said:
    Letter arrived today for may 13 phone assessment
    I assume that will be done by phone? remember to think carefully about the answers you give to anything they ask, stop count to ten then answer don't let them rush you.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Paul7210Paul7210 Member Posts: 40 Courageous
    edited May 2020
    Good luck @Brumboy68 for May 13th, my wife has clusters of seizures on a regular basis, you need to make it clear you need support at home and when you go out, some people have warnings others don't and talk about the seizure types you have. I would be very careful saying you can go two months without a seizure as they will see it that as you don't met the 50% rule, if they require you to attend an assessment centre don't go alone either (unless you have no choice) as in our home town they watch you as soon as you arrive in the car park or from the bus stop ! if you walk in on your own again they will mark you down for mobility support so be very careful. If you have rescue medications for clusters talk about these and if someone helps to administer them, talk about the risks of SUDEP being higher without the support you depend on, and the injuries the seizures can causing and risks being alone i.e having a bath /shower unsupervised.
     Having said that I really hope you gain better control of your epilepsy, my wife's is severe but we have a care support package from our Adult Social Care, they have helped us in the past with PIP and DLA in the past & have been brilliant.

    Paul
  • Paul7210Paul7210 Member Posts: 40 Courageous
    Brumboy68 said:
    I just explained the situation as it is. I have been in hospital for three months in the last year, due to cluster seizures ( where I can get up to 6 a day for a period of anything up to a week or so). Then I can go sometimes a mohth or two clear without having any. Anyway where I have back to back seizures or most of mine last more than five mins ambulances are normally called if I am at home family know what to do. I generally get rushed to hospital on blue lights because of the danger of status epileptic is which I have had before.  My visits too hospital have occurred from shops pavements buses and even talking to neighbour on a drive. I get no warning. So you see how it's difficult to say how safe you are  to walk ten or fifty metres , or whether you need anyone to help you. Neither would have much good too me. I hope you understand where I am coming from. So many things become a danger stairs bathing cooking ironing. I woukd say I have a high risk.  But you cannot say that you can't bath when you can but like everything in your life it has an element of danger.

    In this situation you should really be set up with some rescue medication, this would avoid the need for hospital most of the time, there is Midazolam or Rectal Diazepam, it's really worth speaking to your neuro or epilepsy nurse. Sorry to hear you have clusters of seizures to, my wife has these every few days so we have both rescue medications, it would depend on the situation which one we'd administer but it's better than going to hospital, have replied about pip above.
    Paul
  • Hannah2610Hannah2610 Member Posts: 12 Connected
    I have temporal lobe epilepsy.
    The partials have generalised :/ I get clusters and it all just goes downhill from there. When it generalised, I was so happy. It didn’t matter that I broke a few bones. I finally knew..... why I was losing my sanity and my memory was going out the window.
    There is very little knowledge about the impact of partial seizures. But over time they can have a dramatic impact on memory and mood. As well as the safety aspect, if you have either of the other issues from clusters/partials.., you may have other issues that are by proxy of the epilepsy. Like mood and memory.
    I receive PIP.xxx
  • Brumboy68Brumboy68 Member Posts: 77 Courageous
    I don't have rescue medication. But during my clusters I think it would be too dangerous for someone to administer it would be only be after I had finished that it would be safe. The trouble is  sometimes each seizure can last for over five minutes, and I can  have four or five back to back with hardly any break in between. There is a high.chance of status epilepticus that's why the paramedics are called . If I do get chance I take a clobazam . When in hospital they get really concerned if you are having lots of fits in the same day and you end up in what they call critical care with loads of wires and constant  monitoring. You only get moved when  your seizures reduce dramatically.. You are basically under twenty four hour surveillance. My stupid brain is like an earthquake it erupts then  I get smaller less frequent fits for a number of days for four or five days then get released. I have no cure. Two weeks ago was the worst I have had on my garden lawn I had a cluster , my sister said my breathing became very shallow my breaths very far apart. Paramedics arrived and gave me a shot of midazolam. I was rushed to hospital. I have never been bothered by my fits before but that has scared me. It's on my mind 24/7. Any way when I got back DWP awarded me enhanced mobility backdated and a backdated payment of £600 . So all things can't be bad. So you guys persevere with the dwp but be honest, send medical evidence if you have it, and cross your fingers and pray.
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    @Brumboy68 Good luck for the phone assessment let us know ow you get on
  • Hannah2610Hannah2610 Member Posts: 12 Connected
    Hello :) I have PIP for epilepsy. I have both generalised and partial seizures. They come in clusters, so if I have clusters of partials that generalise, I will go into status.
    It’s standard to get 2 points for cooking, 2 points for bathing. If you have uncontrollable epilepsy which reading above it appears you do...those points have to be given, I know this as I was the first person to go to a tribunal after the change in case law. If you have seizures, it doesn’t need to happen 50% of the time. It could happen only once a year... an the consequences of that can be catastrophic. So they decided, the greater the potential harm, the less the likely it would need to occur on any given occasion.
    I got 1 point for prompting with meds (I have temporal lobe epilepsy, so my memory is ****). I got 2 points for engaging with others, memory plays a huge part, but so does medication. I am not as talkative on medication, it’s an effort. Sometimes I sound funny :/ I think that’s a mixture of the meds and the epilepsy. Also having partials when talking isn’t the easiest to explain to people.
    I went for an MR as I wanted points for complex budgeting decisions (memory), they refused it and I asked to go to tribunal, awarded the points 2 days after asking for a tribunal, which is rare. Fight it, trust me.xxx
  • Hannah2610Hannah2610 Member Posts: 12 Connected
    I just realised I replied to this already. Memory, god I hate my brain sometimes!xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I just realised I replied to this already. Memory, god I hate my brain sometimes!xxx
    Not a problem @Hannah2610, easily done! :)
    Scope

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