PIP, DLA and AA
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hang in there people there is light at the tunnel

Jackie231162Jackie231162 Member Posts: 4 Listener
edited April 2019 in PIP, DLA and AA
Hi I have temple lobe epilepsy and secondary genralisation tonic colonic seizures and high risk of sudden death in epilepsy. I went though hell after losing my DlA that I've had for 17 years. I have a few more health issues as well as epilepsy I've tryed different medications and had bad reactions to them all I've tried keppra and carbamazepine. I've stopped them and waiting to see my neurologist again. I went to appeal to try and win my pip back but I felt the doctor was against me not being on meds I did explain I've had bad reactions and my neurologist stated in a letter to stop if I have any bad reactions. So I had to reapply for pip again 😒 thank God I had a lot of support from my family and friends and CAB help me. I had another medical which was horrible as they made me feel like I'd done something wrong and ashamed of having epilepsy. I was shocked to hear that they gave me high mobility as I am in high risk being on my own. So hang in there people there is light at the tunnel thank God.. good luck to you all and keep fighting and keep safe 😊

Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @Jackie231162 thank you for sharing this with us. I am sorry to hear what you had go through. I happy to hear you had a good outcome after all. :)
  • Jackie231162Jackie231162 Member Posts: 4 Listener
    Hi Antonio. Thank you. Yes was tough but got there in the end 😊 have a nice day 
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Jackie231162 you're welcome. Thank you, you too :)
  • twonkertwonker Posts: 617 Member
    edited April 2019
    ilovecats said:
    Hi I have temple lobe epilepsy and secondary genralisation tonic colonic seizures and high risk of sudden death in epilepsy. I went though hell after losing my DlA that I've had for 17 years. I have a few more health issues as well as epilepsy I've tryed different medications and had bad reactions to them all I've tried keppra and carbamazepine. I've stopped them and waiting to see my neurologist again. I went to appeal to try and win my pip back but I felt the doctor was against me not being on meds I did explain I've had bad reactions and my neurologist stated in a letter to stop if I have any bad reactions. So I had to reapply for pip again 😒 thank God I had a lot of support from my family and friends and CAB help me. I had another medical which was horrible as they made me feel like I'd done something wrong and ashamed of having epilepsy. I was shocked to hear that they gave me high mobility as I am in high risk being on my own. So hang in there people there is light at the tunnel thank God.. good luck to you all and keep fighting and keep safe 😊
    A lot of work is being done behind the scenes to try and improve the assessments and descriptors with regards to applying them to epilepsy so it's good to here it is working. 
    Maybe but it doesn't help those that were unfairly treated in the past, as with this poster, and they didn't have the same strength or will to want to make another application and go through it all again. Unacceptable in my opinion, it should have been dealt with in the correct way at the very start.
  • twonkertwonker Posts: 617 Member
    Sorry. It may well be a positive post for the future claimants of that terrible condition, but it goes without saying that there are many that won't see the benefit of these changes because of past reports and decisions.
    It should not have been the case that for the past 6 years the impact of that condition has been so disregarded. It's fine to change it now but it is a little late in the day for many to move the goalposts. Even if there are claimants that now are given an award but previously had nothing, will they be compensated for the loss on money over the past 6 years? The impact on their life would not have changed, only the way assessors and the DWP now accept it.
  • Jackie231162Jackie231162 Member Posts: 4 Listener
    Never give up or they win. Yes I did go through hell but I am a fighter and got what was rightfully mine. There's a lot of changes going on with pip. And there's help if you ask for it.. good luck and keep fighting don't let the system win...
  • justg72justg72 Member Posts: 173 Pioneering
    Never give up or they win. Yes I did go through hell but I am a fighter and got what was rightfully mine. There's a lot of changes going on with pip. And there's help if you ask for it.. good luck and keep fighting don't let the system win...
    Hi Jackie231162
    I have the same epilepsy as yourself and have struggled with medications and side effects, its also treatment resistant and they are running out of options for me. I have been told to stop some of my meds and I am now waiting to trial a new drug called epilin. With this though the specialists have to put my case forward and explain the reasons why they think I am a good candidate for it. I hope this will finally get it under control as its ruined my life. Can I ask which town you attended your assessment at?
    I am waiting for my tribunal to be heard which is on the 15th of May and this has come too late for me as I am now losing my home. I just hope there's a light at the end of my tunnel and some good comes out of this by winning my tribunal and getting a new home. I am glad that you received a good outcome with yours. Epilepsy is an invisible condition and is really misunderstood, unless you witness a tonic clonic seizure and the aftermath I feel people really don't understand our condition. Take care and I hope they find the right medication for you in the future.
  • Jackie231162Jackie231162 Member Posts: 4 Listener
    edited April 2019
    Hi justg72. I am so sorry to hear you have lost your home :( you need to get some advice from cab who helped me. Plus family and friends. I hope I find the right treatment one day. And try and cope with this monster we live with it's like living in a nightmare bit don't wake up. I hope you have good support. I live near noth west. I hope things turn around for you as it has for me after a long fight. Fingers crossed for you and take good care of yourself 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @justg72, I'm so sorry to hear of you're losing your home. Have you sought any advice from your local CAB or Shelter with regards to this? They may be able to help you. 
    Senior Community Partner
    Scope

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