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PIP and epilepsy

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Comments

  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    Yes I do live in Bradford in the Shipley area, and yes I will keep in contact. Can I ask how long ago did you have your assessment? I had mine the last Monday in March and still havent had the final decision yet but I know that the DM goes on the assessors report most of the time. I am hoping to get a payment from PIP on Tuesday but I dont know for sure, I know that I am in arrears 4 weeks like everybody else who receives PIP, I am going to ring them tomorrow to check. I have been to see a benefit advisor about this and he said you cant do anything until you have the final decision. I will let you know when I get the final decision I will be putting an MR in, however I think this will lead to the tribunal route as the success rate for MR appeals are small. Take care I will keep in touch x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    I had my assessment mid April.

    I dont think you get any payment until they have made a decision.

    When i spoke to dwp the other day i mentioned my complaint about thr assessor and that the report is incorrect. They told me that cant do anything until the final decision is made, and that they look at the report, my application and any other evidence. Dont know if thats true but im thinking they will just go on the report.
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi Lillybelle, yes this is going to be my main focus when or if i have to do a MR.

    I need supervision in cooking and preparing food and also bathing. Due to the 3 types of seizures i have.

    Thanks 
  • justg72
    justg72 Community member Posts: 173 Pioneering
    edited May 2018
    Hi nikkij83
    I have received the dreaded letter today they have scored me nothing! which is a week and a half late. What makes me mad is that I wont be getting the 4 weeks arrears. You get only the weeks from your last payment date to where it ended which only gives me just over 2 weeks, I thought that you would get the 4 weeks but you dont so my last payment is tomorrow. I have rang the epilepsy service at the ridge and spoke to [name removed by moderators] the receptionist and asked her advice on this, she said she would get my nurse to ring me tomorrow about a letter to explain my epilepsy is not under control. When I was on the phone I got upset I couldn't help it and she said that nearly all of their patients with epilepsy had, had their PIP stopped. Before the letter came I rang up to ask about and the lady on the phone said they had made their decision because my health has improved this is what the assessor had said which isn't true its exactly the same! what makes me mad is that DWP hasn't been in contact with my doctor they have taken her word for it because of the 30 min assessment! So I will be putting an MR appeal in and taking it further. I also mentioned that the assessor was comparing people with epilepsy to her husband which she agreed that it isnt right as the condition effects people differently due to the different seizures and the effects it has on individuals lives.Also her husband had had it from been 6 year old and it was under control. I have only been diagnosed with mine 4 years ago and its not under control, I am a bit like a guinea pig the doctors trying to find the right meds to get it under control which has not happened yet. I feel let down and really upset, [name removed] said try not to get yourself in a state because it will impact on your seizures. [name removed] did give me peace of mind that it wasnt my fault and nearly all of the patients at Ridge have been treated the same from different assessors. I hope you have better luck than me and the DM goes against the report the assessors completed. I will be speaking to my nurse tomorrow I will let you know what she says and how I get onxx
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Aww im sorry to hear that. I know it is hard but try not to get upset.

    Dwp should be contacting our consultants and nurses they're the professionals after all not the atos assessors! Its disgusting how people are getting treated.

    It can take years to control epilepsy and sometimes people cant get it under control.

    Do you have a copy of your report? Have dwp explained what points you did get and why they havent awarded you?


  • justg72
    justg72 Community member Posts: 173 Pioneering
    Yes I have a copy of the report and I have scored 0 for daily care and 0 for mobility. I really cant believe that I have gone from enhanced for both to nil! nothing has changed my epilepsy is still the same. I am going to CAB tomorrow in Shipley to see about MR appeal advice. You wouldnt believe the report the DM has written on my decision its unbelievable thats not right as well. I am upset, angry and really fed up. This is going to make my depression worse than what it already is and my seizures. I will let you know more when I have been to CAB and I have spoken to my nurse. I hope you have better luck than me I wouldnt wish this on anybody its so wrong. What gets me is that before the epilepsy I had worked since leaving school and have lost a really good job which I loved supporting pupils with behaviour issues in education.  I  have done this 24 years, I really miss working since I got the diagnosis I cant go out by myself and I have lost my independence its so life changing isnt it. I will update you when I find out more.x 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    I hope you get the help and support you need. Its just awful like you say, nothing has changed then go from getting enhanced to nothing!

    Hope it all goes well x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    I need to make another appointment with CAB and my nurse has just back off her hols so I am waiting for her to call which will be Friday. The last few days I have been so upset and have been having loads of seizures thanks to PIP!
    I will let you know on Friday when I have spoken to the Nurse.
    Take carex
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72

    Im sorry to hear you have had seizures due to the stress of the pips. I know exactly how you feel.

    Hope you get support from cab and your nurse.

    I emailed my nurse last Thursday and havent heard anything back yet. Also got a letter today from atos acknowledging receipt of my complaint. Xx
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    I hear this is very common for people with epilepsy. I suggest searching for "epilepsy PIP" on Google. I'm betting that there are epilepsy charities/organisations which have written very detailed guides for this.
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Just had an email from my specialist nurse. She is more happy to write me a letter regarding my epilepsy and the effects if needed x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    Thats good news because I think you will be needing it to back up your epilepsy just like me. I am waiting till tomorow to speak with mine. I will let you know how I get on.x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    I know that's why i contacted her. Hope it goes well tomorrow for u x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    I have spoken to my nurse today and have explained what had happened with the report. I hope you did not mind but I also told her how identical our assessments were. I mentioned about JS having a husband and comparing our condition to his. My nurse thought this was unfair and also unprofessional what happened to us. My nurse is helping me with my MR and is coming to see me on the 4th of June. I have also logged my MR appeal today and also voiced my concerns about been compared in an assessment to her husband, the person I spoke to agreed that this isnt right as well and advised me to put this in writing which I will be doing. They might look into this more, if more than one person comes forward with the same complaint because this needs to happen as I do not think this is right. Well lets see what this brings. I will let you know how I get on. Or I have also been in contact with a local MP. Take care.X
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72

    Im glad you have found some support to help you with the MR. I dont mind at all that you mentioned me. I have already submitted my complaint against the assessor so if you do too with the same assessor and condition they should hopefully do something about it.

    Ive yet to have my pip decision yet but am expecting a no. Its so stressful.

    What support can your local MP give you? Never thought of that.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    I have contacted an MP in my area at the town hall shipley because a benefit advisor told me to do so. He said that if they think you have been treat unfairly and theres a case they can help you with it so I am just drafting an email together
    with more information. They have asked for my NI number and more information regarding the PIP decision which I will gladly give them because she shouldnt be allowed to get away with what she has done. I will tell you more when I have sent an email and have had a response.X
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Justg72 thanks.  I may do that also when i get my decision. 

    Its wrong that people who need help have to go through all this x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    I have just sent the email to my MP also if you google epilepsy action PIP it should come up with the PIP pledge where it asks your local MP to support the epilepsy PIP pledge. Have a read of what it says. You can put your details in there and it will then send you a letter to your email address, you can then use the letter template, you just have to put names in where it says. I have forwarded an email to my MP first about all the errors on the day and in the report. Then have followed it up with the letter I was sent via email, which can lead to epilepsy and PIP been  discussed in Parliament by your MP. Hope this makes sense just take a look and see what you think. I will let you know if I get a reply off the local MP. they have already replied to my first email. Fingers crossed this might get me further with my unfair PIP decision. It could also help you if you need support regarding your PIP fingers crossed I hope you dont have to go through what I am. I will let you know when I receive a reply.x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Justg72 thank you. I have just completed it for them to send me the letter regarding the pip pledge for epilepsy. On googling the pip pledge it brought up an article stating 3 in 5 people with epilepsy are refused pips and other help. I believe that any illnesses or condition people cant see we are discriminated against. I also suffer from depression and anxiety. I have done since i was 17 I am now 34yrs old. I have had family members in and out of hospital due to mental health and also epilepsy and the system let them. Everyday is a battle even more so since i was diagnosed with epilepsy this February. I hope we both get the support we need and outcome we are hoping for. I will be fighting this all the way not just for me but for others in a similar situation. Please keep me updated and i will you. As i have said no dwp decision yet but not holding out much hope. Nicola xx
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hio nikkij83
    I didnt realise how new epilepsy is to you! I will be fighting all the way for others as well. What gets me is if we had gone to our assessments and had a seizure there we would have probably passed with flying colours. My nurse said that all her patients were getting turned down for PIP, however when it went furher by MR or tribunal all were winning their appeals! I will keep you updated of any information regarding PIP. I feel a bit better today due to talking to my nurse and acting on other things I had to do for my PIP. Speak with you soon X

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