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PIP and epilepsy

nikkij83
nikkij83 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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Comments

  • CockneyRebel
    CockneyRebel Member Posts: 5,216 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
  • nikkij83
    nikkij83 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.
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 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
  • nikkij83
    nikkij83 Member Posts: 42 Connected
  • nikkij83
    nikkij83 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
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 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
  • nikkij83
    nikkij83 Member Posts: 42 Connected
    Thank you. I will contact them next week and ask for the report
  • nikkij83
    nikkij83 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.
  • nikkij83
    nikkij83 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
  • justg72
    justg72 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 
  • Waylay
    Waylay Member Posts: 971 Pioneering
    I'd go and check out the national Epilepsy organisations' websites.
  • nikkij83
    nikkij83 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. 
  • justg72
    justg72 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.
  • nikkij83
    nikkij83 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
  • nikkij83
    nikkij83 Member Posts: 42 Connected
    In my report she also put i dont have postictal state after seizures and im fine....lol if only!
  • justg72
    justg72 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
  • nikkij83
    nikkij83 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!
  • justg72
    justg72 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
  • justg72
    justg72 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
  • nikkij83
    nikkij83 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 

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