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Mandatory Reconsideration PIP - Epilepsy - Help Please :)

SteveSmith111SteveSmith111 Member Posts: 4 Listener
Hi All,

Since the age of 12 I have been suffering with unpredicted epilepsy and I am now 48 years old. My wife is my full time carer because my epilepsy is unpredicted, so my wife is always around me. If we need to go out then I am always accompanied by her. I have been on Disability Living Allowance for at least the last 15 years. I was on the middle daily living rate and the low mobility rate on DLA. However about 2 months ago I received a letter stating that DLA was now moving to PIP, so I would have to complete an application for PIP.  I completed the the application form for PIP and had my assessment (F2F) about 6 weeks ago. Today I have received my assessment results and for Daily Living I scored 6 points and for Mobility I scored a full 12. After looking at the score sheet I don't understand how I have been scored 0 for certain sections, which obviously affect my safety massively. 

Preparing food
I scored a 4/8 which I agree with because I need supervision or assistance to either prepare or cook a simple meal. I can't be around an oven or any sharp objects in the kitchen because when the epilepsy is triggered I grab gold on to objects and need to be held down so I don't fall down and hurt myself.

Eating and drinking
I've scored a 0 on this but I don't understand this one. Scoring a 0 on this apparently means I can eat unaided without any help. When we eat lunch/dinner I am always accompanied by either my wife or my sons. For safety measures my family always cut the food up for me, so it doesn't need the use of a fork/knife. This is dangerous for me because once my epilepsy starts I tend to hold firmly onto objects and swing them around unknowingly, so this is very dangerous. Also, in the past I have choked on food while eating when having a seizure, hence why the eating together as a family to prevent this from happening.

What are your thoughts on this people?

Managing your treatments

I've scored a 0 on this but I don't understand this one too. Scoring a 0 on this apparently means that I can take medication on my own. Recently my pharmacy have prescribed me with a special dosetta box which clearly mentions the day and time I need to take my medication. I requested this for the sole purpose that every time I have a seizure my natural instinct is to take my medication. My family have to stop me doing this because previously I have over dosed on tablets. After an seizure it takes me 10-15 minutes to normal and understand where I am and what happened. So, again I am not sure how I have been scored a 0 here because I clearly use a dosetta box to aid me in taking my medication. 

What are your thoughts on this people?

Washing and bathing

I have been scored 2/8 on this one this one which I agree with. When ever I do wash/bath I always make sure that there is someone around who can keep an eye out for me. I always keep the doors unlocked at home, so my family always have easy access to me.

Managing your toilet needs

I scored a 0 on this one which is really baffling me. How can I have scored a 2 on 'Washing and bathing' and then score a 0 on this?! As I mentioned above when ever I do visit the toilet I always make sure my family know that I am there. The door is always left opened for easy access for my family when I suffer from a seizure. Due to this reason I tend to not use public toilets and if I really need to then my wife stands at the door, which stays unlocked. I once visited a public toilet and had to lock the door and I suffered a seizure. I suffered a cut to my leg which had to have 6 stitches, so I can't get my head around how they have scored me a 0 here? Visiting a toilet on my own is a danger to my safety.

What are your thoughts on this people?

The other sections on the form I scored a 0 and I agree with them to be honest cause they don't endanger to my safety. I have called to have a mandatory reconsideration triggered and I have been advised to write back to them with what I believe is wrong.

Before I start writing this up I wanted to know if anyone has any templates that I can follow? It would be good if this can be shared so I can use it to benefit me if you didn't mind. Secondly, I will be speaking to my Doctor who I hope can draft me a letter emphasising on the three points, but can you recommend anything else that I can do to make my consideration stronger?

Finally I know this is a very long post but I just wanted to make sure I covered all the points. Please feel free to give me any advice at all because I will appreciate all the help :)

Thanks

Replies

  • SteveSmith111SteveSmith111 Member Posts: 4 Listener
    ilovecats said:
    My advise for you would be to read the PIP assessment guide (link below). From my experience, it seems like you have been scored fairly. I would expect Epilepsy with no useful warning and unpredictable seizures to score on Activity 1, 4 and 11 for the safety aspects. As for the others I would not expect you to score for epilepsy alone. The risk factor is not high enough, despite the experiences you have indicated.

    https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities
    Thanks for your response. 

    After having read the criteria I feel as though I am clearly in danger of choking if I do have a seizure which has previously happened to me. 
  • TiddlerTiddler Member Posts: 5 Listener
    i n have to  admit im an epileptic but i  have temporal lobe epilepsy i  also have a spine injury  and fybromialgia , i  have had  up to 11 seizures a day  where  i  just  pass out  anywhere  and collapse understandably  not  good for my  spine i  walk on sticks and had a  a mobility  scooter before it was stolen 3 years previously  so i  have to  travel in taxis now, my  Fibromyalgia is in my  right  ;leg  and  my  left  leg  is not  reliable as its dead due to  a severed  sciatic nerve, when i last  saw the people from pip they  came to the house as i  was unable to  travel i am quite often bed  ridden as i was on this occasion and they dont  agree that i  need mobility on anything  but  low rate ,it  costs me about £140 a month just in transport alone ,they  give me middle rate care even though i  had a carer up until 7 months ago when my daughter left home , so now i  have to  just call on friends and i only know 2 . as i dont  live near any  family but  they  are all to old or ill to be of any  assistance to me and i  wouldnt ask .i  have meals delivered which  costs  me  £37 a week  and i  struggle to  dress etc etc , but i  get  nothing  extra to help with  my  expences , when my  seizures  hit im out  cold for 3-5 hrs and it  takes me hrs to recouperate im shaking all over and  disorientated  but i  was told i didnt  need the help even though when she asked  me to  stand and close my  eyes i  fell and  i  couldnt walk without pain , and my  daughter did most of the talking as i  suffer  from short term memory  loss and struggle to  stay with the conversation . im 62 i live alone and have to manage alone. these people would probably  be more sympathetic if they  had these problems . people take walking and  picking up a piece of paper off the floor  and the simple tassks in life for  granted  but i  feel for people like steve , and i  wish  they thought  more for people like steve and not give benefit to  people with  minor problems more than the ones who really  need it ,take care steve
  • SteveSmith111SteveSmith111 Member Posts: 4 Listener
    Thanks for all your help, much appreciated. Would you have any templates on how a mandatory reconsideration shoukd be written or is it as simple as writing it in a word document.

    @ilovecats I know I might be going off topic here but being on the middle rate for DLA my wife used to entitled to carers allowance. With me scoring 6 points this will be stopped for now. I do currently get ESA at the moment, so what happens with carers allowance. Does this get added to my ESA that I get? I'm sorry I'm knew to all this change, so trying to understand it. If my wife's carers allowance and my daily living is stopped, then I'm at a loss off approximately £300. If my wife is not my carer anymore who is responsible for caring for me on a day to day basis.

    Thanks for all your help again.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    For your PIP MR then you need to state what you disagree with and where you think you should have scored those points and your reasons why. Adding 2-3 examples of what happened the last time you attempted that activity for all the descriptors that apply to you.

    Most MR decisions remain the same, so you'll most likely have to take it to Tribunal Do bare in mind that when asking for the MR they look at the whole decision again and not just part of it. No one on an internet forum can tell you if there's any risks to your current award by requesting the MR.

    Any extra evidence you have should be sent with the letter and should state how your conditions affect you. I must admit you've had some fantastic advice from @ilovecats

    As for your ESA because you don't have a PIP daily living award then your wife's carers allowance will stop. Do you claim ESA as a couple or does your wife claim another benefit herself, like Income Support along side the carers allowance?

     If you're awarded PIP daily living in the future then your wife  can claim the carers allowance again and it will be backdated to the date it stopped.
    Community champion and 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.
  • justg72justg72 Member Posts: 173 Pioneering
    Hi SteveSmith111
    I am sending you a website link, I hope this works as I have used this information for my PIP MR and my tribunal for my epilepsy. https://www.epilepsysociety.org.uk/system/files/attachments/PIPassessmentcriteriaAPR17_54.pdf.
    This information is outstanding I just hope the link works.
    Good luck
  • SteveSmith111SteveSmith111 Member Posts: 4 Listener
    Hi,

    For your PIP MR then you need to state what you disagree with and where you think you should have scored those points and your reasons why. Adding 2-3 examples of what happened the last time you attempted that activity for all the descriptors that apply to you.

    Most MR decisions remain the same, so you'll most likely have to take it to Tribunal Do bare in mind that when asking for the MR they look at the whole decision again and not just part of it. No one on an internet forum can tell you if there's any risks to your current award by requesting the MR.

    Any extra evidence you have should be sent with the letter and should state how your conditions affect you. I must admit you've had some fantastic advice from @ilovecats

    As for your ESA because you don't have a PIP daily living award then your wife's carers allowance will stop. Do you claim ESA as a couple or does your wife claim another benefit herself, like Income Support along side the carers allowance?

     If you're awarded PIP daily living in the future then your wife  can claim the carers allowance again and it will be backdated to the date it stopped.
    I am the only one that claims ESA and the only source of income my wife gets is carers allowance because she is my full time carer. If the carers allowance does stop then we will struggle as a family.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger


    I am the only one that claims ESA and the only source of income my wife gets is carers allowance because she is my full time carer. If the carers allowance does stop then we will struggle as a family.
    What's the reason why you're not claiming ESA as a couple? Do you claim contributions based ESA? If your wife isn't working then you should be claiming as a couple.
    Community champion and 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.
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