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    • kingfisherblue
    • By kingfisherblue 14th Jun 19, 9:31 PM
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    kingfisherblue
    It's arrived!
    • #1
    • 14th Jun 19, 9:31 PM
    It's arrived! 14th Jun 19 at 9:31 PM
    My son's letter to apply for PIP has finally arrived. He is 21, and has been on an indefinite award since he was eight years old. I've been expecting it since he turned 16, and the brown envelope dropped through the letterbox yesterday.

    I'm going to ring for the forms on Monday. I've already started to gather evidence of his needs in relation to the descriptors. I'm waiting for an updated EHCP, so I'll include that along with his prescription sheet, feeding plan from SALT, and other relevant information.

    My only concern is that the GP and hospital do not list all of his diagnoses. They tend to list Down's Syndrome and four conditions that he was born with. Those conditions were repaired at birth, but left him with long term problems including dysphagia, abnormal peristalsis, and others. He also has hypermobility, which is not usually mentioned either, despite him needing a wheelchair as a result. He has a GP appointment in a couple of weeks, though, so I am going to discuss it with him then. I'm not sure which GP it will be, as we have a new doctor who replaced our now retired GP. Another doctor in the surgery cannot be described as helpful by any stretch of the imagination. The third doctor is dour, but accurate. None really know my son though. This should be fun!
Page 1
    • poppy12345
    • By poppy12345 14th Jun 19, 9:56 PM
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    poppy12345
    • #2
    • 14th Jun 19, 9:56 PM
    • #2
    • 14th Jun 19, 9:56 PM
    You don't need a diagnosis to be awarded PIP. It's how those conditions affect your ability to carry out the activities based on the PIP descriptors.


    You said you have relevant evidence to send with the form, which includes the EHCP, which sounds fine to me.


    When filling out the forms you should put as much information as possible about how his conditions affect him, for each descriptor that applies.



    I'd advise you to also add a couple of real life examples of what happened the last time he attempted that activity for each descriptor that applies to him.


    This is exactly what i done for my daughters recent PIP review. I used extra A4 paper for all the information. I wrote it out roughly to start with and then typed and printed it out, so it made it easier to read. Adding her name and NI number on each sheet i used.


    Based on the information i sent and a call to someone on her contact list from the mental health team she had a paper based assessment this time. Award remained the same, Enhanced for both parts.


    This link will help you understand what the descriptors mean too.

    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


    Good luck.
    • Fizzy11
    • By Fizzy11 14th Jun 19, 10:13 PM
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    Fizzy11
    • #3
    • 14th Jun 19, 10:13 PM
    • #3
    • 14th Jun 19, 10:13 PM
    I quite agree with Poppy. Give as many examples as you can for each descriptor. I found it helpful to go online & download the descriptors & the meaning from whichever charity you feel is most helpful for your son. I used the Autistic Society & Mind for my son. Don’t forget to base everything on the very worst day & the hardest thing is don’t like the positive parent you are.
    • poppy12345
    • By poppy12345 14th Jun 19, 10:24 PM
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    poppy12345
    • #4
    • 14th Jun 19, 10:24 PM
    • #4
    • 14th Jun 19, 10:24 PM
    Donít forget to base everything on the very worst day
    Originally posted by Fizzy11
    No no no, sorry but that's potentially the worst advice ever and possibly potential benefit fraud.


    PIP isn't about your worst day and you should never base anything on your worst day.



    PIP is about how your conditions affect you at least 50% of the time over a 12 month period. So, it's about your good and bad days.


    If someone fills out their forms based on their worst day and then when it's time for their assessment, it's one of their better days then the HCP is likely to see straight through this. They could think " well, if that's their worst day then they can't be as bad as they say they are"



    Please be honest because it's the only way to be, nothing more, nothing less.
    • kingfisherblue
    • By kingfisherblue 15th Jun 19, 8:02 AM
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    kingfisherblue
    • #5
    • 15th Jun 19, 8:02 AM
    • #5
    • 15th Jun 19, 8:02 AM
    Thank you. I'm aware that PIP isn't about diagnooses, but about how you are affected in relation to the descriptors. It would be useful to have all of them listed though - he has several that are never listed. I'll have to use additional paper, and planned to do this anyway. I think I'm going to bullet point everything, as this will be clearer to read.

    I've already started to gather examples. On the budgeting question, I will include how excited he gets when he finds money on the ground - he found 2p once, and thought that he could get a Subway 12" sandwich meal. He handed in his 2p, and then held out his hand for change . Obviously I paid the full amount for him, but it shows how he cannot make any budgeting decisions at all.

    I will be basing everything on an average day. To base it on his worst days only would be fraud, and I will not go down that path. In addition, medical evidence would not support that. My son chokes on food due to physical abnormalities in his oesophagus. As he has grown older, the choking has become much less frequent. This is a natural and expected part of one of his conditions. On his worst days, the choking is really quite bad and can last several hours. However, these times are no longer daily and are far less frequent. If I described his worst days only, I would be lying, as it implies that he is like that most of the time. Believe me, I am very thankful that he no longer chokes to the same extent as he used to!

    I am also listing his disability equipment and who provided them. For example, his wheelchair is from NHS wheelchair services, his magnifier is from the Low Vision Unit, and his insoles are custom made via the Orthotics department at the hospital. He also uses a trolley to push things rather than carry them, but I bought that myself. Most things have been provided by outside services rather than by ourselves though.
    • poppy12345
    • By poppy12345 15th Jun 19, 8:55 AM
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    poppy12345
    • #6
    • 15th Jun 19, 8:55 AM
    • #6
    • 15th Jun 19, 8:55 AM

    I've already started to gather examples. On the budgeting question, I will include how excited he gets when he finds money on the ground - he found 2p once, and thought that he could get a Subway 12" sandwich meal. He handed in his 2p, and then held out his hand for change . Obviously I paid the full amount for him, but it shows how he cannot make any budgeting decisions at all.
    Originally posted by kingfisherblue
    Perfect example! I used a similar example when i filled out my daughters PIP form, including an example of a conversation we'd had a couple of months before.



    She scored points for descriptor C for making budgeting decisions but she can't make them at all, so really should have scored more. As her award was already Enhanced for both i didn't argue obviously.



    Good luck with the claim and if you have any questions please just ask, i'm sure someone will help.
    • venison
    • By venison 15th Jun 19, 7:17 PM
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    venison
    • #7
    • 15th Jun 19, 7:17 PM
    • #7
    • 15th Jun 19, 7:17 PM
    KFB hope it all goes ok for your son I have my DLA to PIP assessment this coming Tuesday.
    If you are not part of the solution then you must be part of the problem.
    • Fizzy11
    • By Fizzy11 15th Jun 19, 9:06 PM
    • 124 Posts
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    Fizzy11
    • #8
    • 15th Jun 19, 9:06 PM
    • #8
    • 15th Jun 19, 9:06 PM
    No no no, sorry but that's potentially the worst advice ever and possibly potential benefit fraud.


    PIP isn't about your worst day and you should never base anything on your worst day.



    PIP is about how your conditions affect you at least 50% of the time over a 12 month period. So, it's about your good and bad days.


    If someone fills out their forms based on their worst day and then when it's time for their assessment, it's one of their better days then the HCP is likely to see straight through this. They could think " well, if that's their worst day then they can't be as bad as they say they are"



    Please be honest because it's the only way to be, nothing more, nothing less.
    Originally posted by poppy12345
    Iím sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day & it definitely doesnít tell you to talk about good days. To say Iím committing fraud is disagraceful. With something like Epilepsy there are no good days because a seizure can happen at any time so you live with that day in & day out.
    • poppy12345
    • By poppy12345 16th Jun 19, 5:15 AM
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    poppy12345
    • #9
    • 16th Jun 19, 5:15 AM
    • #9
    • 16th Jun 19, 5:15 AM
    I’m sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day
    Originally posted by Fizzy11
    I stand by what i say and i'm sure if others read this, they will agree. Never ever fill out forms as if it's your worst day!! I've also never read any advice from any charity that advises you to fill them out using your worst day. This link is on of them.

    https://www.epilepsysociety.org.uk/how-fill-your-pip-form#.XQXQsY8o9PY
    Last edited by poppy12345; 16-06-2019 at 5:19 AM.
    • _shel
    • By _shel 16th Jun 19, 5:19 AM
    • 2,082 Posts
    • 3,803 Thanks
    _shel
    Iím sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day & it definitely doesnít tell you to talk about good days. To say Iím committing fraud is disagraceful. With something like Epilepsy there are no good days because a seizure can happen at any time so you live with that day in & day out.
    Originally posted by Fizzy11
    That's nonsense. Im a form filler for CAB and we never tell clients to fill it out like that. It would be lying aka fraud, liable to get rejected as the assessors know how different things effect people.

    Besides PIP isn't about it effecting you 100% but 50% of the time.
    • kingfisherblue
    • By kingfisherblue 16th Jun 19, 3:23 PM
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    kingfisherblue
    KFB hope it all goes ok for your son I have my DLA to PIP assessment this coming Tuesday.
    Originally posted by venison

    Thank you. Good luck on Tuesday, and let us know how your assessment goes.



    KFB x
    • _shel
    • By _shel 16th Jun 19, 3:35 PM
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    _shel
    I think you will have a good enough insight to get through this successfully. ❤️
    • kingfisherblue
    • By kingfisherblue 16th Jun 19, 3:48 PM
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    kingfisherblue
    I’m sorry I disagree. If you read the advice from charities about completing the PIP forms they say use the worse day & it definitely doesn’t tell you to talk about good days. To say I’m committing fraud is disagraceful. With something like Epilepsy there are no good days because a seizure can happen at any time so you live with that day in & day out.
    Originally posted by Fizzy11
    I disagree that you should base your application on worst days. It is potentially fraudulent, as PIP is based on average days. However, I always advise people to write about their average days and then add details of their worse days, including how often they occur and how they are affected.

    I don't claim PIP myself, although I have some health issues. i'll give an example of why worst days should not be used, although they should be referred to. One of the conditions that I have is migraines. Generally speaking, when I get the 'niggle', I lie down in a dark room for several hours - I tend to get a severe pain over the corner of my right eye, see flashing lights, become nauseous, and lose the ability to speak in sentences or with clarity. However, when my migraines are worse, I cannot function for up to five days, during which time my other two children have to look after their brother and their nan (I also care for my mum). They also have to look after me. Even if it is only 24 hours, a migraine of this proportion means that I cannot move without help. I cannot wear my glasses, and the lightnening flashes are frequent and very painful to my eyes - I'm photophobic, so that doesn't help. I vomit occasionally, and am nauseous to the extent that I cannot bear to sip water, much less anything else. I cannot remember what I want to say, and my words slur and make no sense. I have to be lead by the elbow to the car, whilst my daughter drives me to the GP, and I have to place a damp flannel over my eyes because I cannot bear any light whatsoever. I cannot wash myself, and obviously I cannot cook.

    Now, based on my description, it is likely that I would receive PIP - except that medical evidence would show that I am not affected at least 50% of the time. Yet based on my worst day, I should receive PIP.

    Epilepsy is slightly different when someone needs to be with you in case of a seizure, so that you can be kept safe, but I still would not base it on my worst day. My late mother-in-law had epilepsy and needed someone with her at all times. She had regular absences, but major seizures only occurred about 2-3 times a year. When they did occur though, an ambulance had to be called each time.
    • venison
    • By venison 16th Jun 19, 7:07 PM
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    venison
    Thats my main condition epilepsy, sadly I have absences 3 or more times a day and grand mal seizures 3 times a week, on paper getting PIP should be easy but in practice maybe not so.
    If you are not part of the solution then you must be part of the problem.
    • Fizzy11
    • By Fizzy11 16th Jun 19, 9:50 PM
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    Fizzy11
    My son has been on DLA then PIP & ESA for a very long time & had lots of assessments & every form has been filled in honestly. The descriptors refer to 50% of the time, safely, repeatedly & reasonable time period.

    Epilepsy falls into the realms of ‘safely’ and under a new rule entitles to many people to the Mobility element of PIP however, sadly this all depends on how the form has been completed. The medication for Epilepsy has side effects regarding memory & for many anger.

    Poppy I would give anything to be fraudulent because then my son would not have the severe learning difficulties he has combined with Epilepsy which because it was hard to control resulting in him fitting for hours & being seconds from death, or nearly being killed by an HGV driver because he had a seizure crossing a road. If I was fraudulent he would be able to receive benefits then !!!!!! off on holiday with his mates or even just once go to the pub with his non existent mates.

    I have fought for 36 years & know all about fighting for benefits but just so you know I’m a mother not a carer so therefore have never once considered claiming that benefit.
    Good luck on Tuesday Venison. Regardless of anything you read just be honest & don’t give up.
    • venison
    • By venison 16th Jun 19, 9:57 PM
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    venison
    Thanks will let you know how it goes but not expecting a decision for around 6 weeks but who knows?
    If you are not part of the solution then you must be part of the problem.
    • venison
    • By venison 18th Jun 19, 6:30 PM
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    venison
    Thank you. Good luck on Tuesday, and let us know how your assessment goes.



    KFB x
    Originally posted by kingfisherblue
    I think it went well...the assessor thought that an assessment shouldn't have been necessary as I'd provided a lot of letters to back me up, she also explained that her previous job had been nursing people with epilepsy, it took about an hour and she was very thorough and polite throughout, I will just have to sit back and wait for the outcome now,will have to put it to the back of my mind.
    If you are not part of the solution then you must be part of the problem.
    • kingfisherblue
    • By kingfisherblue 18th Jun 19, 8:26 PM
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    kingfisherblue
    I think it went well...the assessor thought that an assessment shouldn't have been necessary as I'd provided a lot of letters to back me up, she also explained that her previous job had been nursing people with epilepsy, it took about an hour and she was very thorough and polite throughout, I will just have to sit back and wait for the outcome now,will have to put it to the back of my mind.
    Originally posted by venison

    I'm glad that it went well, and I hope that you receive the right result. It sounds as though she understood your condition well. Please come back and let us know whether you are happy with the outcome.


    KFB x
    • Fizzy11
    • By Fizzy11 18th Jun 19, 8:46 PM
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    Fizzy11
    Venison pleased to read your assessment went well.

    For anybody going through the PIP process the Gov.uk website has today updated their website on the descriptors & the other changes.
    • kingfisherblue
    • By kingfisherblue 27th Jun 19, 7:53 PM
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    kingfisherblue
    OK, so I didn't ring as soon as I intended to. Life just got in the way. I rang today - I still had a week to ring, so I'm in plenty of time. I've spent some evenings gathering information after my son has gone to bed. Other evenings I've just collapsed into bed at 9pm, the same time as my son!


    I made the call this afternoon, and most of it was as expected. The young man who took my call even commented that he lives a few miles up the road from me - he's about four miles away. He was very pleasant. There was one thing that I didn't expect though. Towards the end of the call, he asked me if my son had any of the following conditions: schizophrenia, dementia, ADHD, Down's Syndrome, severe developmental delay. There were a couple of other conditions that I can't remember too. I replied that my son has Down's Syndrome and severe developmental delay.



    Does anyone know why I was asked this? I wondered if it was because some of these conditions may mean that the claimant can be aggressive, but that's not necessarily the case, so I'm probably wrong.
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