PIP, DLA and AA
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PIP and epilepsy

nikkij83nikkij83 Member Posts: 42 Connected
edited April 2018 in PIP, DLA and AA
Hello
Im wondering how many people have had a successful pip claim for epilepsy. I have temporal lobe epilepsy and have had tonic colonic seizures and complex partial seizures which alter my awareness.

have just returned from having my assessment today and feel totally deflated, upset and unlistened to. Ive been in tears this afternoon with it all.

The lady who did my assessment told me that epilepsy doesnt effect your memory and i should speak to my consultant. I disagreed with her and said that actually my epilepsy specialist nurse told me it does. Epilepsy, the medication and also depression  l (which i also have) effects memory. I explained how i forget to pay bills and take medication. She made it out as if i was lying.

She also went on to tell me her husband has epilepsy and doesnt get anythiny, and how hard it is to get pips for epilepsy.Personally i feel she may have been comparing me to him, when everyone is different and different types of epilepsy.

I also feel she didnt ask questions on how i need supervision and why when cooking etc.


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Replies

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi nikkij and welcome

    Unfortunately we see similar stories on the forums far too often

    You should ask for a copy of the assessment report asap. You will need this to identify the areas that you need to challenge

    This may be jumping the gun a little bit as you haven't had a decision yet but in preparation for the next step when you do get it.

    If you can you should get help from CAB or any charity that supports your condition

    For now you need to concetrate on showing that you meet the descriptors for an award.

    Although it is important to address any issues with the assessment report or HCP, this should be done as a separate complaint to the assesment provider. It can be beneficial to mention that you are making a formal complaint

    Most HCP' and DM's don't take into account the reliability factors and make their decisions on a snap shot of your life, how you were at the time.

    To complete any of the descriptors you need to do so Safely, Repeatedly, In a timely manner and to an acceptable standard.

    For example : If you can walk 20 - 50 metres but you can't repeat it straight away and you need to rest for some time before you can do so again then you cannot be said to complete that descriptor. Or if it takes you twice as long as an able bodied person you cannot complete the descriptor
    Dressing and undressing : If your medication takes some hours to work in the morning and you cannot dress without assisstance because of this then this needs to be taken into account

    Go through each descriptor one at a time and see how these factors may apply
    You should look at each activity and break it down into sections and apply the reliability factors to each section

    For example Preparing food

    Can you do so ?  ( safely, realiably, to an acceptable standard and in a timely manner )
    If not, why not ?
    What is it about your condition that stops you doing so ?
    Can you do so if you have help or and aid ?
    What happens if you don't have help or an aid 

    Do this for each descriptor for your MR

    There is a template that you can used for the MR

    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/683380/if-you-disagree-with-a-decision-made-by-dwp.PDF

    and some additional information

    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/683381/how-to-disagree-with-a-decision-made-by-dwp.PDF

    You have a month from the date on your decision letter to request an MR. You can do this by letter or phone. Be very aware of this date, do not miss the deadline. If you are waiting for further evidence, then you can ask that the decision is not made until you have submitted this. They may or may not do so.

    If you haven't asked for the report until now, it is unlikely to arrive before this date so make it clear that you will be sending further evidence and that they should wait before carrying out the MR until it is received.

    If you can get further relevant evidence you  should submit this but it is not essential. Often, it is not your evidence that is the problem but the way it is read ( or not )

    MR's can often take 8 weeks or more but may also be done very quickly and before your new evidence is received. If this happens you can ask for the decision to be looked at again taking into account your new evidence.

    MR's have a low rate of success at present but this stage has to be completed in order to advance to the appeal tribunal.

    There is lots of good info on this site about appeals so please have a look around

    CRUnfortunately we see similar stories on the forums far too often

    If you can you should get help from CAB or any charity that supports your condition

    If you haven't done so you should ask for a copy of the assessment report asap. You will need this to identify the areas that you need to challenge

    For now you need to concetrate on showing that you meet the descriptors for an award.

    Although it is important to address any issues with the assessment report or HCP, this should be done as a separate complaint to the assesment provider. It can be beneficial to mention that you are making a formal complaint

    Most HCP' and DM's don't take into account the reliability factors and make their decisions on a snap shot of your life, how you were at the time.

    To complete any of the descriptors you need to do so Safely, Repeatedly, In a timely manner and to an acceptable standard.

    For example : If you can walk 20 - 50 metres but you can't repeat it straight away and you need to rest for some time before you can do so again then you cannot be said to complete that descriptor. Or if it takes you twice as long as an able bodied person you cannot complete the descriptor
    Dressing and undressing : If your medication takes some hours to work in the morning and you cannot dress without assisstance because of this then this needs to be taken into account

    Go through each descriptor one at a time and see how these factors may apply
    You should look at each activity and break it down into sections and apply the reliability factors to each section

    For example Preparing food

    Can you do so ?  ( safely, realiably, to an acceptable standard and in a timely manner )
    If not, why not ?
    What is it about your condition that stops you doing so ?
    Can you do so if you have help or and aid ?
    What happens if you don't have help or an aid 

    Do this for each descriptor for your MR

    There is a template that you can used for the MR

    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/683380/if-you-disagree-with-a-decision-made-by-dwp.PDF

    and some additional information

    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/683381/how-to-disagree-with-a-decision-made-by-dwp.PDF

    You have a month from the date on your decision letter to request an MR. You can do this by letter or phone. Be very aware of this date, do not miss the deadline. If you are waiting for further evidence, then you can ask that the decision is not made until you have submitted this. They may or may not do so.

    If you haven't asked for the report until now, it is unlikely to arrive before this date so make it clear that you will be sending further evidence and that they should wait before carrying out the MR until it is received.

    If you can get further relevant evidence you  should submit this but it is not essential. Often, it is not your evidence that is the problem but the way it is read ( or not )

    MR's can often take 8 weeks or more but may also be done very quickly and before your new evidence is received. If this happens you can ask for the decision to be looked at again taking into account your new evidence.

    MR's have a low rate of success at present but this stage has to be completed in order to advance to the appeal tribunal.

    There is lots of good info on this site about appeals so please have a look around

    CR



    Be all you can be, make  every day count. Namaste
  • nikkij83nikkij83 Member Posts: 42 Connected
    Thank you for your reply.

    I do believe you can not request a copy of the report until dwp have made there decision? As my assessment was only today i will wait and see what the outcome is. However, i am expecting to be rejected based and the lack of further questioning and remarks made by the assessor today.

    I also think the problem is i really struggle to explain how i feel and how it affects me.

    You have given me some very useful information which i will refer to when decision is made.

    Its very difficult with epilepsy because between seizures i can walk, talk and dress myself etc. Its the supervision needed in cooking, ironing, travelling and getting baths/showers. Etc.

    I just feel like she had already made her mind up before evening listening to me.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Unless you are in Northern Ireland then the report should be available within a few days
    Epilepsy has been difficult but there was a ruling which might help, to do with the safety and possibility of harm, I will try and find it

    CR
    Be all you can be, make  every day count. Namaste
  • nikkij83nikkij83 Member Posts: 42 Connected
  • nikkij83nikkij83 Member Posts: 42 Connected
    Ive just checked the booklet with the assessment letter. States you cant have a copy of the report until dwp have made there decision. I think i know the ruling you are referring to the 50% rule that was dismissed by tribunal
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi nikki

    ESA they won't send report until decision is made
    but this is not the same for PIP. Some poorly trauned phone jockeys will tell you that but be assured many of our community have had their reports before the decision

    Yes, the 50% rule. For anyone wanting to read it

     https://www.disabilityrightsuk.org/news/2017/april/risk-harm-need-not-be-‘more-likely-not’-when-assessing-pip

    CR

    Be all you can be, make  every day count. Namaste
  • nikkij83nikkij83 Member Posts: 42 Connected
    Thank you. I will contact them next week and ask for the report
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi, just received a copy of the assessor report total lies, missed info and contradicted herself. The boxes she has ticked in the descriptors total 5 points. However, the contadictions she has made - can cook using oven and microwave but needs supervision but then in descriptors box ticked cant use oven only microwave and nothing about supervision. If she had put the correct descriptors box i would have scored higher.

    Also said i am forgetting to take medication and pay my bills so needs help/prompting but then descriptor box ticked no help needed.

    Submitted a complaint about the assessor earlier this week before i received this report.

    It is quite obvious shes marked me like this due to her husband not getting pips for his epilepsy.

    How she can write i need supervision etc but then not tick the correct descriptors box so i dont score the points it ridiculous.
  • lillybellelillybelle Member Posts: 458 Pioneering
    Hi,
    i have uncontrolled epilepsy so know exactly where you are coming from.
    your main thing is SAFETY.
    and whilst having a seizure or afterwards you are not safe and you are putting your life at risk.
    everybody who suffers with epilepsy is different.
    one person works and can drive.
    another needs care 24/7
    i was awarded enhanced mobility as I needed somebody with me at all times when I went out because of my SAFETY
    i can’t have a bath or shower on my own because of SAFETY ( drowning)
    i cannot cook because of SAFETY.( burning)
    i also do not eat alone because of SAFETY ( choking)
    i only scored 6 for daily living but was changed to 8 at MR stage.
    please read the epilepsy web page.
    your condition must affect you more than 50% of the time.
    i was told I had no problems with my memory because I knew what school I went to 
      So in my MR I stated that I was quite well educated and would be insulted if anybody thought otherwise.
    However during a seizure and afterwards I had absolutely no control. I can’t see, hear, or feel. Have no awareness of where I am or anybody at all. Therefore I am a danger to myself.
    when this period is over very gradually my memory does return. It mostly affects my short term memory.
      If you can get a free disability charity to help you, give you advice as a lot of the time it is how you word it.
    Please do not give up as so many have been turned around.
    on your MR form don’t start calling the assessor a liar. Concentrate on yourself and how your disability affects you.
    good luck.
    im proof that people with epilepsy can get awarded Pip
  • nikkij83nikkij83 Member Posts: 42 Connected
    Thank you for your reply. I will have a look at the chartities see who can help. Ive also emailed my epilepsy specialist nurse to see if she can write a letter too x
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikkij83
    It sounds exactly the same as my F2F assessment. I suffer from the same epilepsy as yourself and I can not believe how identical your assessment was to mine. The assessor said exactly the same that her husband had epilepsy and he did not receive benefits for his. Can I ask what the name of the assessment centre you had your F2F? I was awarded nothing in the HP report even though I have uncontrolled epilepsy and can have x3 tonic clonic seizures a day. At my assessment the HP answered questions I was not asked and they was so many discrepancies in my report. It stated that I have 10 minute warnings before I have a seizure thats why this time a fortnight ago I had a seizure when going down the stairs and had to go to hospital in a ambulance! I had really injured my back and foot and was in a right state. The report said that I could do everything including getting a bath and cooking with boiling pans and ovens! I would not dare do this as its not safe to do this. I am going down the MR route and are fighting this as the report suggests I am fine which I am certainly not. Good luck with yoursxx 
  • WaylayWaylay Member Posts: 922 Pioneering
    I'd go and check out the national Epilepsy organisations' websites.
  • nikkij83nikkij83 Member Posts: 42 Connected
    edited May 2018
    Hi my assessment was held at [location removed by moderator] with atos. 

    I dont believe they should be bringing their personal lifes into our assessments and we shouldnt be given an assessor who has partner epilepsy. I dont see how it can be a fair assessment.

    Its obvious she compared me to him despite disabilities effecting people differently and so many types of epilepsy. 
  • justg72justg72 Member Posts: 173 Pioneering
    edited May 2018
    Hi nikkij83
    Oh I cant believe it! thats where I went. The same assessor as me what are the chances of that. She compared me to her husband but stated that he had lost many jobs because of his epilepsy and his is under control and he has had since he was 6 year old. I have only had mine for 4 years which has led to me loosing my job and driving licence. How can she compare us to her husband, I would have thought that she would have a better understanding of our conditions. Maybe we need to mention about her bringing her personal life into our assessments. I am having to put in an MR appeal in because of the discrepancies in my report she has answered questions I wasn't even asked. She also said she knew my epileptic nurse and I think that this shouldn't have been mentioned in my assessment. If you dont mind me asking is your nurse [name removed by moderator] from the [location removed by moderator] because she knows her. You can ask for a copy of your assessment before you get a decision. I am getting a letter off my Specialist Epileptic Doctor to  back up my uncontrolled epilepsy. Please keep in touch and let me know how you get on. Good luck and I am sorry that your  experience sounds identical to mine. I have put a complaint in and their doing nothing so I am taking it further.
  • nikkij83nikkij83 Member Posts: 42 Connected
    edited May 2018
    Hi i can not believe this! Hoe can she be allowed to get away with this. My epilepsy nurse is called [name removed by moderator] also at the [name removed by moderator]

    I havent had my dwp decision yet but have a copy of my report and its lies, contradictions and stuff i never said. 

    Ill be going down the MR route if i dont get it which i doubt i will. Also sent a complaint about the lady assessor and will take that further too.

    I hope you are successful in your MR please keep in touch. Cant believe its happened to  us both in bradford what are the chances x
  • nikkij83nikkij83 Member Posts: 42 Connected
    In my report she also put i dont have postictal state after seizures and im fine....lol if only!
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikkij83
    The lady in question had initials JS she has to stop eating sooo many lemons! I 
    agree I think she is very bitter so that gives her the right to give people no points! I was so upset when I read my report I was in tears for days. How can she get away with this. I am taking my complaint further. I will be complaining about her again. My complaint was about the computers been down as well none of my  
    evidence was taken into account including my seizure diaries, I also complained
    about her answeringi questions I was not asked. If her husband is epileptic she would know that when a person has a tonic clonic seizure you are unconscious and when you come round you dont know where you are, you are  confused, you talk nonsense and cant understand people. It can take me hours to come around.
    It makes me think has he got epilepsy? because if he had she would know that your not fine after a seizure. I will keep in contact, good luckxx
  • nikkij83nikkij83 Member Posts: 42 Connected
    Oh yes me too assessor JS! We wont mention names on here but exactly the same lady.

    I too wonder if her husband has epilepsy or if she was just making it up. Its not fun and games having epilepsy its crippling every day even when u dont have a seizure you think is it going to happen today etc!
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikkij83
    Yes frightened to death of going out of your house just in case you have a seizure and may have a toilet accident no its not fun at all! living in fear of having a seizure. When I read your post I couldnt believe it. I would love to see 6 months of her assessment reports just to see how similar they are! When she stated I was fine and had 10 min warnings thats why I ended in the B.R.I. taken in by ambulance due to collasping down the stairs and fitting all the way down to the bottom and still fitting. Would you say I had 10 min warnings I dont think so. I didnt put her name just initials as she might read things on this site, her husband if he is disabled might be a member. I have lost everything because of a 30 min assessment. I wish she would have seen me when I had a seizure because that report would have been entirely different! x
  • justg72justg72 Member Posts: 173 Pioneering
    I forgot to mention this but I suggested showing her my seizures which I had on my phone because my epileptic doctor wanted to see them she point blank refused I wonder why? is it because it would show evidence of how it effects my life before, during and after a seizure she was having none of this! lol
  • nikkij83nikkij83 Member Posts: 42 Connected
    She said to me she wasnt interested in what happened during or after my seizures just how i am every day!

    Its unbelievable isnt it? 

    Do you live in bradford? We should keep in touch on how we both are getting on with our MR 
  • justg72justg72 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
  • nikkij83nikkij83 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.
  • lillybellelillybelle Member Posts: 458 Pioneering
    Like I said before. Your best argument about why you should get pip with epilepsy is safety

  • nikkij83nikkij83 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 
  • justg72justg72 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
  • nikkij83nikkij83 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?


  • justg72justg72 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 
  • nikkij83nikkij83 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
  • justg72justg72 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
  • nikkij83nikkij83 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
  • WaylayWaylay Member Posts: 922 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.
  • nikkij83nikkij83 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
  • justg72justg72 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
  • nikkij83nikkij83 Member Posts: 42 Connected
    I know that's why i contacted her. Hope it goes well tomorrow for u x
  • justg72justg72 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
  • nikkij83nikkij83 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.
  • justg72justg72 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
  • nikkij83nikkij83 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
  • justg72justg72 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
  • nikkij83nikkij83 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
  • justg72justg72 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
  • nikkij83nikkij83 Member Posts: 42 Connected
    Justg72  yes only diagnosed in February 2018, had first tonic colonic seizure in april 2017 and loads of complex partial seizures since. Thinking back over my teenage years and speaking to my consultant jad the complex partial seizures since for a while  but i thought they were anxiety/panic attacks. Its all new to me not really come to terms with it all. All i know is know is how its changed me as a person and my whole life and relationships with people. Its awful. 

    Ive heard of an atos assessor continuing with the assessment whilst the claimant was having a tonic colonic seizure! She kept asking his wife questions whilsts he was having the seizure. Says it all really x
  • nikkij83nikkij83 Member Posts: 42 Connected
    And on a personal note i feel totally alone. Like nobody understands what im going through/feeling. My husband trys his best to help.

    I dont know anyone personal who has epilepsy but know many people have it. My uncle did have it but he passed away 4yrs ago.

    Ive thought about joining the support group at the ridge medical centre but im unsure about going.
  • justg72justg72 Member Posts: 173 Pioneering
    hi nikkij83
    I really feel for you because its so life changing I can vouch for that. I used to be very sociable and independent, I am not anymore so I fully understand where you are coming from its awful and scarey. I am hoping some day it will be under control. I bet you do not go out by yourself anymore because I dont I darent. I am like you I don't know anybody with it personally, none of my family have it so I don't understand where mine has come from. I understand about feeling alone my family don't understand how I feel. Lets hope that one day we will be cured by our meds. Ask your nurse for support if you do have to do an MR she will help you, mine is. xx 
  • nikkij83nikkij83 Member Posts: 42 Connected
    Its life changing even though i tell myself its not going to take over it certainly has.

    My uncle had epilepsy but his was due to a brain tumour then he had mental health problems due to the operation to remove the tumour. He then died of heart failure.

     I too used to be so independent now all i want to do is stay at home where i feel safe x
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikkij83
    How are you today? hope your okay any decision letter over the weekend?
    I forgot to tell you I have just added my story regarding epilepsy and PIP on the epilepsy action site and they have just published it on their site I have just added on scope unfairly treat by PIP have a read because I am wondering because there's so many been unfairly treat by PIP including ourselves! I wonder if there's anywhere else you can complain like the Ombudsman. Something needs to be done just looking at the scope site there's so many stories about how unfairly people have been treat and what about all the lies on peoples reports. Surely this needs looking into there's too many! also people with epilepsy and mental health conditions are getting discriminated against life's hard enough without having health conditions. Why are genuine people been refused benefits they are entitled to. I feel like setting a web page up and collecting all these horror stories and then going to the houses of parliament with them! I might write to Teresa May! I cant believe all the stories I have read just on the scope site and NOTHING isn't getting done. 
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 
    No havent heard anything back yet. I still have another 2 weeks out of the 4 weeks they say they should reply within.

    Ive looked previously and there is loads of bad reports etc. Dwp are fully aware according to one article i read but nothing gets done.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    Any news yet? hope you are ok! I thought I'd update you.
     I have had a response from the MPs wife, she said that she had given the brief account on what happened in my assessment and the report to her husband. I also mentioned the assessor, and her comparing my epilepsy to her husbands. If its ok by you I could mention how she treat you especially when you have had the final decision regarding PIP. let me know what you think? if you don't I will not mention it.  The MPs wife said that she had passed the information on to him for him to pursue on my behalf. I will see if this helps my MR appeal, I have heard that people who didn't score anything before got reassessed or had then received the PIP. MPs need to be aware of how people with epilepsy are been let down by the DWP because their condition is misunderstood. I am up to eyes in paper work trying to get my appeal together. If you get your decision and its not good and you need any help with your MR, I will be happy to help if I can just  let me know. I am starting my MR but my nurse is going over it and helping me tweak it. If you need an MP, maybe the one which I have contacted may look into your PIP. Are assessments were so a like, two can't be wrong. When I read your first ever post I comented about it but I don't think you received it! I couldn't believe what I was reading and thought that sounds just like my assessment.
    I will let you when I have anymore news. Take careX 
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    Im ok had a few complex seizures this week. Hope you are ok.

    No news yet it will be 4 weeks this tuesday coming so hopefully will get something soon. Not looking forward to it as i think with the report she did i wont be getting anything.

    I dont mind you mentioning it to your MP. I am going to have to sort my appeal notes, specialist nurse letter out sometime over weekend/next week. Struggling to find the time.

    My nurse has agreed to do me a letter regarding my epilepsy, what happens during and after my seizures and how its effecting me. Hopefully this will help and i will contact my MP too.

    Ive got the email for the epilepsy pledge to do also that you mentioned last time. 

    Any help would be great, its all new to me and struggle to think straight best of times x
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Nikki
    I have never had to do this before I have passed and scored enough. Well I will mention you and tell how identical our assessments were and on how were getting compared to her husband which is not right at all. My nurse agreed with me, she also said she didn't know the assessor but the assessor said different she said she knew her. My friend who came with me for my F2F assessment read your post and thought I had wrote it, there are identical in what got said in every way its unbelievable how many more has she compared her husbands condition to others I would love to know.
    Like I said I will let you when I have any news. x 
  • WaylayWaylay Member Posts: 922 Pioneering
    @nikkij83 and @justg72 I don't have epilepsy, so if this is inappropriate, please tell me to go away. 

    I have chronic pain, which includes acute muscle spasms in my left lower back, buttock, hip, and thigh. They happen a lot, and I can't predict them. Some of them aren't too bad (6/10 pain, can call taxi, then walk a short distance (10m?) to it), but some are horrendous (9.5/10 pain, collapse onto ground, can't stand, walk, etc.). I'm always on 50-100mg of tramadol (and a variety of other things), but when I have a spasm out of the house, I usually have to take tramadol 150mg, and a big dose of diazepam.

    I usually can't get very far without a taxi, but when my back is more functional, and my anxiety/depression are behaving, I can q


  • WaylayWaylay Member Posts: 922 Pioneering
    Oops, kitten love attack. Sorry :)

    So when I can get out, I'm so anxious, because if I have a bad spasm, I'll end up in the ground in a public place, unable to move, out of my skull from pain, and I basically have to depend on some stranger to stop and help me, and then trust them, and then the taxi driver, not to take advantage of me when I'm physically completely dependent and mentally screaming/drugged to the nines. 

    I don't go out much. 

    Got 0 points on PIP.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Nikki
    How are you? hope you are OK.
    Have you seen the front page of the telegraph and argus today! its all about the PIP and people losing their benefits who are disabled. If you can get out to get one its well worth the read,wouldnt your husband be able to go to the shop for a TA? it states that a labour MP is disgusted on how people who are disabled are been treat losing all their benefits leaving them financially living in poverty. I have been contacted by the MP again with a contact number now so I can ring them which I will tomorrow. See if you can get a TA and lets us know what you think?xx

  • justg72justg72 Member Posts: 173 Pioneering
    Hi Wayley
    I think I understand what you mean about your condition, it affects you differently from day to day which is the same with epilepsy. When I haven't had a seizure, I am OK, but when I have I wake up on the floor, dont know where I am, I cant walk, I am confused, I dont understand what people are saying, and when I do talk none of it makes any sense. It can take ages to come around and then all you want to do is sleep because it takes it out of you. Many household tasks which need to be done daily eg cooking, ironing, bathing etc I can not do these things by myself and need supervision at all times doing these tasks because of safety. The assessor said I was fine at everything which is not true.
    Last year I had ran a bath and got in it, my son was outside the bathroom listening out for me and talking to me to make sure I was OK, which was a good job as I had a seizure in the bath and nearly drowned. My son noticed I had stopped talking and heard a lot of splashing he knew there was something wrong he found me under the water having a tonic clonic seizure. He pulled the plug out and held my head above water to stop me from drowning. So when they say what are the chances of somebody having a seizure when completing daily tasks, from a safety aspect, I will never get a bath again. The assessor put on my report that I could bathe unsupervised! Its so wrong how people who are genuine are losing benefits because an assessor says so in the brief time they see you on that day. The day I was assessed I hadnt had a seizure if I had, it would be totally different. This is what I will be putting in my MR.   
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    I have just read it. One of the MPs mentioned is the MP i will be contacting regarding the pip pledge.

    Im off work now on leave so will be concentrating on my pip appeal etc. I havent got a decision yet but i already know what it will say.

    One of the things the assessor put in my report is that im ok memory and thinking etc because of where i work! My whole working life has changed. Had to reduce my hours, decreased work load and cant do the complex cases any more. Even due to time off with seizures i am under a sick review at work.


    Hi Wayley

    Thank you for sharing your experiences with pips. Have u appealed the decision?
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Nikki
    If you do not mind can I ask what job you do?
    I would definitely get your MP involved especially when its one who says the system is a shambles. Hes going support you and will probably be disgusted on how you have been treat by the PIP.
    Like your comment above about your sickness been under review thats what happened to me then I lost it through ill health.   
    I would try and hold on to your job if you can because I have applied for many jobs supporting pupils with behaviour issues and have not been successful. They say they do not discriminate against people with disability's, but I know they do my specialist doctor agreed with me. My doctor said at the moment I am not fit for work because of the number of seizures I am having on a daily basis, however I can not survive on what benefits I am receiving now so I am in a catch 22 situation. I am having to look now but my specialist doctor will probably say I am not fit she may refuse to write me off sick, so I dont know what I am going to do. Seems to me DWP do not give a s...about disabled people, there making it impossible for people to receive benefits they deserve which leads to people suffering more and not been able to survive so they give up and try and get a job. I really do not know what I am going to do I will put an MR in see where this takes me.xx 
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    I am a civil servant  (tax side) been employed with them since leaving school. Alot of things at work have had to change since i was diagnosed with epilepsy.

    Im going to get the ball rolling this weekend with MP, nurse and MR etc. Still nothing from dwp yet though 
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Nikki
    Hope you are ok
    Yes do not blame you getting the ball rolling with MR because if the DM goes on the assessors report you will not be getting PIP. I have been in contact with epilepsy action about the PIP Pledge, I have had a response because I emailed them to tell them that an MP is looking into my PIP. I also mentioned the assessor comparing us to her husband they agreed that this shouldnt be allowed and was disgusted that this had happened he said I hope you are putting a complaint in regarding this matter. This will be getting done as well, when I have completed my MR I will be sending a follow up complaint as I have already complained and they are not doing anything about it. Good luck writing your MR. I will let you know when I have any news.xx
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    How are you hope you are okay
    Any news yet? hows your MR coming on because if you are struggling like me I have found a brilliant site which could help. Its on the epilepsy society site called the pip assessment criteria assessment tool. It shows all of the daily tasks and gives really good information on how to complete your MR, I have been using that to do my MR which I have started, my nurse is going to look at it and help as well. My MP has contacted the DWP about my PIP so I am waiting  for DWP to reply to him. I hope this makes a difference as I do not know what to do.I can not live on the benefits I am receiving now its an impossibility and my doctor said she will not give me a fit note so I am in a catch 22. This has really impacted on my seizures with all the stress I am having 3 seizures a day because of this. I can not believe you did not score more on your assessment especially because you have been recently diagnosed with epilepsy. I think her mind was already made up before I went into my assessment!  I will let you know when I have any news, hope you are having a good holiday off work.xx
     
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    No nothing from dwp yet has been 4weeks today.

    I have written to my nurse and MP today though so thats sorted. I dont know what ive scored yet as nothing back from dwp but like you she had already made her mind up.

    I havent started my MR yet as thought i could wait until dwp write to me. Do they tell you why you havent been awarded? So you can challenge them on those areas?

    Yes if you can give me the details of the site your using that would be good.

    Sorry to hear you are having daily seizures, why wont your doctor give you a sick note?
  • justg72justg72 Member Posts: 173 Pioneering

    Hi Nikki

    This is the link its really good and gives fantastic advice: 
    PIP aPDFssessment criteria APR 2017.indd - Epilepsy Society
    https://www.epilepsysociety.org.uk/system/files/.../PIPassessmentcriteriaAPR17_54.pdf

    My doctor will not write me off as fit for work thats what I meant, i am going to see her on the 14th of June so I will be discussing this with her.
    When you receive your final decision  report the DM points out what you have scored for the different daily tasks, this will enable you to disagree and then put why you think the decision is incorrect. Take a look at the link I have sent it shows you how to disagree by putting down how your epilepsy affects you, this prevents you not been able to complete tasks in a safe, consistent and timely manner. If you have any trouble with the link I put into google: help sheet for PIP and epilepsy daily living and its the third one down.
    Good luck with your MPxx
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    Spoke to dwp earlier. A decision letter has been sent on 27th....they weren't able to tell me the decision on the phone as wasn't showing on the system.
  • fia1998fia1998 Member Posts: 2 Listener
    I had trouble with epilepsy and PIP and how they said that epilepsy wasn't a disability but after this we fought the council about my payment and how epilepsy is a disability and that it does affect your life in many ways. When we sued the council for counting epilepsy as a disability they took on doctors notes and testimony and they offered me a settlement and they eventually acknowledged that epilepsy is a disability. Hope this helps xx
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Nikki
    Crossing my fingers for you! hope you have better news than me!
    I am having a word with my epileptic doctor about going back to work as I can not live on the benefits I am not receiving now. I just hope she will see it from my point of view! I will fight the PIP this time but I am unable to do this every year as people are having to do on this site, Ive had enough already the government make me sick. Good luck hope you score enoughxx
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    I doubt it very much with my f2f report that is incorrect that i will have good news. Im dreading the brown envelope coming.

    Im very stressed with it all too and havent even got to MR stage. 

    Im thinking ill do the MR but i dont think i could cope with a tribunal not with my depression and anxiety aswell.

    Have you submitted a complaint against the assessor yet? I have about 2/3 weeks ago before dwp have even made a decision because how she was wasnt right.

    I dont know how you are coping. Stay strong  x
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    Just rung dwp again and explained still no letter. Lady told me on  phone been turned down.

    Its what i was expecting but still not easy to take in.
  • lillybellelillybelle Member Posts: 458 Pioneering
    I know it’s hard at the moment but take time  to calm down a little so that you can think more clearly
    an MR is now needed and the sooner this appeal can start.the better for you.
    do you have any points at all?
    go through your report and decision when received
    start with each task.
    eg- you can’t cook because of safety. Any incidents that have happened write them all down Any hospital visits caused through injury? Write it down 
    i scores points on cooking, bathing and having someone with me while eating as I had a seizure with a mouth full of food. 
     this added to 8 points.
    personally I think I should of had more as I forget whether I’ve taken my medication so my hubby makes sure each morning & evening.
    however I am happy with what I have.
    stress again and again that your epilepsy is not controlled, you have no warnings. Again safety.
    i can’t go out alone as I suffer from absences. I cannot hear,see,feel,talk or am aware of anything or anybody for about a minute. Then there are the after effects- memory etc.
    I was awarded enhanced mobility ( haven’t got blue badge as I haven’t applied and no need for a car either but just goes to show that people who park in disabled bays do have hidden disabilities)
     Do not mention assessor at all. Just concentrate on your needs.
    also I wrote a paragraph at the end saying that I was intelligent and well educated and would be offended if anybody thought otherwise.
    however it is during and after seizures that my health and actually my life is at risk.
    and this happens many times a day.
    i just sent the same letter from my GP as I sent with my application form. This just confirmed my diagnosis and the fact that it affects my daily life.
    they never contacted anybody .
    it took 2 weeks for them to change the decision in my favour.
    just remember a judge may end up reading what you have written
    good luck


  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi lillybelle

    Thank you for your advice. I havent yet received my decision letter. I rang dwp and they told me on the phone.

    So im going to try relax until my decision letter is received then look at appealing.

    Im not going to mention the assessor, but should i mention where i disagree with her comments and state reasons why? Eg. She said i can cook using a microwave but i actually need supervision cooking as very rarely use my microwave. Like you i have complex partial seizures where i have altered awareness, i have had accidents whilst cooking due to loss of sight and awareness but not ended up in hospital. People cant be expected to live just using a microwave especially when you have children and also could be risks with using microwave eg. Transferring food.

    I too also forgot my medication and paying bills. I tried to explain how i am unsafe when out alone during and after seizures but this wasnt taken into account. I have 3 diff types of seizures.

    My epilepsy nurse is going to write me a letter too.

    The assessor wrote that i havr good cognition due to the job i do. Like you i would be affended if anyone thought differently but after seizures i am totally different and at work things have changed.
  • lillybellelillybelle Member Posts: 458 Pioneering
    You can state why you think the decision is wrong. And say why and give a full example.
    but don’t start calling the assessed a liar ( even if she is)
    they might hold the fact that you are working as a factor even though you are totally within your rights. So state what has changed at work.
      The assessor kept asking me about hospital visits. The last one was 2 years ago as I broke my foot.
    i replied that the hospitals were too busy for somebody to see me because of bruising etc.
    Go through every little detail and have an answer and reason for each one.
    im sure in the end you will get the result you are entitled too.
    for goodness sake do not give up
  • nikkij83nikkij83 Member Posts: 42 Connected
    Lillybelle 

    Thank you

    Your right work shouldnt count against me and will state everything that has changed. Hours, types of work and health and safety plans put in place.

    Im not going to give up ill just going to take a few days off and not think about it all. Then ill start my appeal. Xx
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    So sorry to hear about your decision on PIP its so unfair what they are doing to people with especially people with our condition. Have you had a look at the link I have sent you previously its really helpful. I have just been completing my MR, just got 3 more to complete. Are you going to contact your MP? once you have the decision letter, you will be able to ring and tell them you are appealing. The date I have to send everything in, is different from the decision date on the letter. My PIP ended on the 8th of May they have given me till the 28th of June. I totally agree with your comment about living off microwave meals, I have a son so you can not just live off the microwave. Guess nikki you have children. Its totally unacceptable to expect your children to live off them sort of meals. You are doing the right thing taking a few days out without the thought of PIP, thats what I did.
    I am seeing my nurse on Monday, I will let you know if I have any information which could help you to complete your MR.
    Try not to stress and I understand how hard this can be not to.xx 
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    How did you get on with your nurse?

    I have emailed my MP with the pip pledge but nothing back. Also contacted dwp today to say i will be doing an MR. They wanted me to do it over the phone but i saif no as i would have forgotten things and also waiting on a letter from my nurse.

    Yes i have a 10yr old son and we like to eat healthy so rarely use microwave. Funny thing is i never mentioned a microwave in my assessment so for all the assessor knew i didnt even have one.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    My nurse came to see me and she is going to write me a fantastic letter stating that I have been advised off her not to cook, iron,get baths etc because of safety.
    I would email your MP again I have just heard from mine and they are waiting for dwp to respond before arranging a meeting. I am well on the way with my MR now, its really stressed me out theres been tears because of it! I would ask your nurse for help with your MR because it does help you a lot. I have a 15 year old son so they cant expect us to feed them on microwave dinners there so unhealthy! I cant wait to finish the MR so I can switch off a bit, I've had enough of it. Try to make an appointment with your nurse if you can as well as getting a letter.
    I will let you know when theres more news.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    Thank god i have completed my MR! A lot of work as gone in to this, its a shame I can not send it across to you so it gives you an idea.Are you back at work now?
    Nurse has read it and she says its really good.
    I will let you know when i have any more news.x
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    I started mine last night only did 2 paragraphs and re-read my report. Ended up with headache so put to one side for another day.

    What kind of things have you written? Im going to say where i disagree with them, why and give an example etc. Nothing much really else to do i guess.

    Keep me updated and all the best of luck x
  • lillybellelillybelle Member Posts: 458 Pioneering
    I found that a few cups of tea and a full biscuit tin helped me concentrate.
    it took me 2 days
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi lillybelle 

    Lol yes sounds like a good plan. Just going to do abit each day take my time. I have until 5th july 
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    You have the same epilepsy as me, Temporal Lobe. Tell them what type of seizures you have. Look at the descriptors, if you disagree with what the assessment says tell them why and tell them what you believe you should have been scored. Then tell them how your epilepsy affects you doing that activity mention things like not been conscious when you have had a tonic clonic, memory problems,depression, moods, confused state, been tired and the need to sleep following a seizure, accidents with the bladder/bowel, not making sense, mobility problems, losing your senses etc. Then tell them you are not able to keep yourself safe, not been able to do the task: to an acceptable standard, in a timely, reliable, repeatable, consistent, manner etc.Make sure you mention the 50% rule. Also tell them of any accidents and injuries you have had because of your epilepsy.

     The start of the letter I explained my epilepsy and the type, I had only had it since 2014 not since birth, I mentioned it been life changing, I am finding it hard to cope with, I have lost my job because of this, I have lost my independence, dignity, confidence, self respect etc. Mention aids e.g. shower chair, commode,care line, hand rails.

     I also put this: I attended my face to face assessment at name of centre on the ?March 2018. I have raised a complaint separately regarding my assessment by taking it to the next level with Atos. I have also involved name my Local MP, he is looking into my assessment and complaint I have raised. I do not agree with the inaccurate report and subsequently the final decision for Personal, Independence, Payment. When I attended this appointment I had not had a seizure, if I had the scores would have been entirely different. If you are using a word doc to do the letter remember to put your name, N.I. number, M.R. P.I.P. Page 1/6 and hand written signature on every page. When you have completed it, gather all your docs, letters, seizure diaries and when you ring to tell them you are appealing PIP, you should be sent a letter from them, this needs to go back to them with all your M.R. docs before the deadline date. I would also send it recorded delivery so there are no excuses, or we have not received your letter.
      

    Communicating verbally
     Activity 7
    I have scored 0 I believe this is incorrect.
    I should have scored 4.

    Just before a seizure I can act very strange, during a seizure I lose consciousness, I am not aware of anything around me. I lose all my senses including my sight, hearing, touch, smell, taste and all sense of reality. I will come around from my unconscious state not knowing where I am, at first I do not recognise people as well. My communication is severely affected I am not aware of what people are saying. When I talk I do not make any sense what so ever and talk absolute rubbish. To me I think I am making perfect sense and when others do not understand what I am saying I get angry, frustrated and scared with not been able to communicate or understand basic verbal communication. Without communication support I could put myself in great danger by not been able to understand communication at all.

    I have had a phone call from PIP today and I do not know what to think about it. It was a manager and she asked if I was putting an MR in. She went on to say have you still got epilepsy or have had a miraculous recovery? I went on to say that I still had it and it is the same still not under control, nothing has changed. She then said your report says 0 points thats all. I said well that is down to the assessor putting that everything is fine and my epilepsy has improved. Which is incorrect and I did not say that! Also DWP has not been in contact with any of the Dr's or nurse who treat my epilepsy. She also mentioned the complaint I put in and that I had to take it to the next level but not with DWP with Atos. I also mentioned that the assessor was very bitter about people getting PIP because of epilepsy and comparing her husbands to my epilepsy, I said surely this is not right as every bodies epilepsy is different. She agreed with me and told me to complain about this. I also mentioned the computers been down and  the inaccurate report. I also said that I had an MP looking in to this on my behalf, I then mentioned his name and  she said he is a high ranking MP, do not know what she meant by this. I wonder if she has rang me because of the MP I have involved.

    Nurse has given me the thumbs up and said that my MR was really good, however I bet I have to go all the way to a tribunal. I am going to send my MP all the paper work I have including my MR letter, lets see what this brings.
    I will let you know if I have anymore news, if you get stuck with your MR just scope me and I may be able to help. xx

      

  • mikehughescqmikehughescq Member Posts: 5,989 Disability Gamechanger
    A bit late to the party here but there certainly seem to be grounds for complaint about the IAS assessor. However, there needs to be clarity that, in itself, there is no issue with a HCP bringing personal experience to bear. How that occurs is really the question. 

    It’s also worth saying that challenging a HCP report is all well and good but it won’t get you PIP. IT may reduce the weight given to their report but if your own evidence is not that great then it’ll make no difference.

    As has also been said on other threads, there is no onus on DWP to seek evidence on your behalf. You’re the claimant and you have to evidence your claim rather than the DWP. 
  • justg72justg72 Member Posts: 173 Pioneering
    A bit late to the party here but there certainly seem to be grounds for complaint about the IAS assessor. However, there needs to be clarity that, in itself, there is no issue with a HCP bringing personal experience to bear. How that occurs is really the question. 

    It’s also worth saying that challenging a HCP report is all well and good but it won’t get you PIP. IT may reduce the weight given to their report but if your own evidence is not that great then it’ll make no difference.

    As has also been said on other threads, there is no onus on DWP to seek evidence on your behalf. You’re the claimant and you have to evidence your claim rather than the DWP. 
    Hi mikehughescq
    I have been in contact with epilepsy action, The DWP who deals with P.I.P. over the phone two, of their workers, The DWP manager and my own epileptic nurse have all agreed that the HCP should not bring her husband in to other PIP claimants assessments. She can not compare her husbands epilepsy which he has had from been 6 years old and for the last 10 years his seizures are under control, to somebody who has seizures daily. I think there's a big difference when people receive the diagnosis in their thirty's and forty's, its totally life changing. Also how can you compare somebody with uncontrolled epilepsy who struggle every day to somebody who has not had a seizure for ten years. Every bodies epilepsy is different and some are more affected than others following a seizure.
    The HCP seemed really annoyed that people with epilepsy claim benefits, this was pointed out in not just my assessment, but nikkis as well. We both had our assessment with the same HCP and at the same place. The HCP also said that her husband had always worked, but then said he had lost many jobs because of his epilepsy. My nurse is giving me medical evidence now to send in to tell them that my epilepsy is not under control, unpredictable and affects me more than 50% of the time. The HCP said I could cook, bathe, iron, etc without supervision. Professionals which deal with epileptic patients would strongly disagree with this and would advise not to complete these tasks unsupervised. I am surprised the HCP did not say I am fine to drive because she said I could do other dangerous tasks alone. Anyway I am taking the complaint to Atos thats what the DWP manager told me what to do.
      
  • mikehughescqmikehughescq Member Posts: 5,989 Disability Gamechanger
    Sorry, I should have been clearer. There’s an issue with the comparisons which were drawn and the conclusions drawn from that. There’s no issue per se about bringing personal experience to bear.
  • WaylayWaylay Member Posts: 922 Pioneering
    @justg72 and @nikkij83 Glad I wasn't butting in! I always feel like my condition is functionally a bit like epilepsy, except that at least I'm awake afterward, although definitely not compos mentis. It's horrible when you never know when you'll have a spasm/fit, isn't it? One time I was in the bathroom with the door locked. Couldn't get off the loo, but as the door was locked, my partner couldn't get in. I was in there for 45 minutes before I managed to get to the door. :/ 

    @nikkij83 Yeah, still waiting for appeal date, 8 months later. 🙄
  • justg72justg72 Member Posts: 173 Pioneering
    Hi waylay
    I know exactly what you mean about constantly thinking am I going to have a seizure today or in your case its different but sounds similar to seizures. Every time I go out thats all I think about, this can lead to having a seizure. My nurse has backed me up with not been able to cook, bathe etc unsupervised in a letter and said she advises me not to do these tasks if I am alone. Sending my MR off on monday lets see what happens next. 
  • WaylayWaylay Member Posts: 922 Pioneering
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    How are you? any updates.

    Ive just received my response from atos regarding my complaint. Totally what i expected so will be writing to then again.

    At the time i complained i hadnt received a copy of the report so when i reply will be stating what is wrong and was never said.

    Their reply is just what i imagined and feel like just giving in. My husband tells me not too
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    Exactly the same response what I got off atos and yes I am going to complain again, they make you sick. I felt like giving like giving up, but now I have written my MR up I thought no I am going to fight! I have not got any more news, I have just copied my seizure diary and it has not printed out right, so I have to write in the bits what have been missed. All of my MR is getting sent off tomorow it would have been all completed and off if it was not for the seizure diary. More work I could do with out. I understand how you feel, I have been the same thinking is there any point as I bet it does not get me anywhere. I can see me having to take it to a tribunal. I did not have my report when I complained either so I will be doing the same as you pointing out things which was not said. Good luck with your complaint and MR.xx
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    Im still on with my MR! Oh what a hassle it is.

    Received a letter from my nurse at the weekend to be sent with my MR its really good. So greatful she took the time to do it for me.

    I still haven't heard back from my MP.

    Have you sent your MR in now?
  • justg72justg72 Member Posts: 173 Pioneering
     Hi nikki
    How are you, hope you are well. My MR was sent last Thursday recorded delivery and I have rang them today to see if they have receive it. It has been passed on to a Senior Manager to look at, however it can take up to 6 weeks to be looked at.
    I would try and phone the MP again, how did you contact the MP by email or phone? That's not right they should respond. If you live near shipley you would be able to have Mr Philip Davies MP, He has been in contact with the DWP for me and I have had a letter to say my complaint is now stepped up to the next level and a manager is now looking at it. I had a lengthily chat with his wife yesterday and she was asking if I had heard anything form PIP so I passed all the information on. I then received a letter from the Houses of Common stating that the MP wants my complaint to step up to the next level. I have to now put in writing about my assessment and highlight what I do not agree with  because when I put the complaint in I have not seen the assessment report, just the same as you. Are you struggling with the MR? I think I can let people see my email address on this site, if I can you could email me and I will may be able to help by showing you an example of mine. I am glad that the Nurse has wrote you a great letter of evidence, thats just what you need to back up the evidence, this was mentioned today when I rang to see if there had received my MR. He commented on medical evidence been sent this time, as I thought they contacted your Epileptic Specialists. I did not realise that we had to send the evidence instead. This is quite new to me I had only been in receipt of PIP for 3 years before I had lost it. The other time they contacted my Nurse and got the evidence I needed for PIP. I will be in contact when I have an update or let me know if you need any help.
  • nikkij83nikkij83 Member Posts: 42 Connected
    Hi justg72 

    Im am struggling abit as i have loads of other things going on at the moment with work and family. Im not sure how i can view ur email?

    I emailed my MP and also the one in shipley as mine hadnt replied. Your MP got back to me straight away stating not in right area as im in bd2.

    I will contact my MP again just want to get MR done first then also to respond to the assessors reply to my complaint.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi nikki
    I am BD2 and he is supporting me, so I can not understand why he won't for you!
    I have released my email so see if you can see it, I don't know how to look at peoples emails but I have just ticked a box to release it. I hope your MP gets in contact with you. If you can see my email and need any help with your MR I could help you if you want as I understand how daunting.
    I am just writing more to add to my complaint.
  • nikkij83nikkij83 Member Posts: 42 Connected
    Got your email address thank you x
  • CariadCariad Member Posts: 7 Listener
    Hello, I am applying for PIP for epilepsy due to brain tumour. I was turned down for PIP last year on the basis that my seizures don’t occur frequently enough so I do not satisfy the 5O% rule. My seizures are unpredictable, I get no warning so they can occur at any time. I feel like I am under the Sword of Damocles. My social life is ruined. I had a really bad seizure a month ago and was hospitalized. Any advice appreciated.
  • RalphRalph Member Posts: 40 Connected
    edited November 2018
    I lost my care component and I was having 2-3 per week, no warning, short of the 50% rule. You may get mobility component even if you don’t get care as I received the high rate mobility component. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Cariad said:
    Hello, I am applying for PIP for epilepsy due to brain tumour. I was turned down for PIP last year on the basis that my seizures don’t occur frequently enough so I do not satisfy the 5O% rule. My seizures are unpredictable, I get no warning so they can occur at any time. I feel like I am under the Sword of Damocles. My social life is ruined. I had a really bad seizure a month ago and was hospitalized. Any advice appreciated.
    HI,

    Did you appeal that decision by first asking for a mandatory reconsideration, then Tribunal? If not is there any reasons why you didn't? and when was the decision made on that claim?

    Starting a new claim isn't the answer because using the same evidence you used the first time then there's a high chance you can be refused again. Have you started a new claim yet?
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • CariadCariad Member Posts: 7 Listener
    Hi Poppy,
    Yes, I asked for MR and was awarded 4 points. Unfortunately, I didn’t go to Tribunal because I was out of time with the appeal. 
    I have started the new claim because since the first claim I have undergone brain surgery which has affected my speech. I don’t know if that’ll make a difference.
  • mikehughescqmikehughescq Member Posts: 5,989 Disability Gamechanger
    How much out of time? How long ago now? A new claim here is sadly not the answer. 
  • CariadCariad Member Posts: 7 Listener
    Hi Mike,
    Around 2 weeks. It was a year ago. So it’s not worth putting a new claim in?
  • mikehughescqmikehughescq Member Posts: 5,989 Disability Gamechanger
    Absolute time limit is 13 months. No reason at all to not put a late appeal in. 

    New claim fudges everything. Nicely summarised by @poppy123456 although there’s lots more reasons to not do it. 
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