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PIP And Colostomy

GeraldGerald Posts: 213Member Pioneering
edited February 12 in Disabled people
Hi first sorry about putting a lot of post up but after going to see my counsellor who offers me this practical advice to help me get things down in words to help me to keep it off my mind as much so this is it after going to my PIP assessment this is just one thing is it me who is wrong or the assessment who are right on Managing toilet needs or incontinence at the assessment I was asked if I had problems to which the answer is yes like if I do go out I have to go out with bags back plates wipes and some more clean clothes to put on if my bag comes off or leakage as I have know control of my stoma it works and I do not know tell I look at or feel my bag and it can just come off to then there is the problems at night and working in bed and not know tell you smell it and have to get up and get clean then in the morning have to ring my sister to help strip my bed and help clean it as I have know grip in my hands with my rheumatoid arthritis and then there is the problems with parastomal hernias that give you a blockage and have to go to hospital for mesh and with how much mesh I have you can feel it and in pain all the time with it and then there are the skin problems like ulcers that are hard to get rid of with your back plates not sticking on right so is it me that is wrong or the assessment that is wrong and the PIP Mandatory Reconsiderations that go with the assessment and do not look at letters form my Doctor and the Hospital and still go with the assessment so for the Managing toilet needs or incontinence  after telling the assessment to put in there report that I have know problems you toilet needs or incontinence and know aids in this and give me ( 0 points ) so is it me who is wrong or the assessment that is wrong and if you are going to a PIP assessment or going on to PIP put in the form that you like them do a to recording the assessment with one for you and one for them and get a letter form them with yes on it to recording your PIP assessment and so that they do not put a fast one on you and when you get you assessment date and were to go ring them and tell them you have a letter that your assessment as to be recording with one for you and them hope this bit will help someone going for a PIP assessment as at this time I am getting to the point just giving up and just thinking end it all the one thing that stops me is my sisters and upsetting  them as to is there something more that they my have done I will not let them do that to me and upset  my sisters know way just have to go to the tribunal which is now at just over 12 months and still in the line for the tribunal. Thank you and sorry about the last part and the rant but just had to put it down in words so sorry and Thank you.

Replies

  • Sam_ScopeSam_Scope Posts: 7,477Administrator Scope community team
    Hi @Gerald

    So here are the points for toileting needs and PIP

    Managing toilet needs or incontinence is a daily living activity. Add the points you score for this activity with the points you score for other daily living activities to find out if you may be entitled to the daily living component of Personal Independence Payment (PIP).

    When you are looking at how many points you score for going to toilet, think about what help you need most of the time to do it:

    • Safely
    • Well enough
    • Often enough
    • Fast enough

    You score the points for the sentence that is true for most or over half of the time. If more than one sentence is true, you normally only get points for the sentence that is true for the most time. You can only score one set of points for going to toilet, do not add them together.

    No points

    You can get on and off the toilet, go to the toilet and clean yourself afterwards without any special aids.

    You suffer from incontinence, you can manage it yourself and you can clean yourself afterwards without any special aids.

    Examples of special aids:

    • Adapted toilet or commode
    • Incontinence pads
    • Grab rails

    Two points

    You can only get on or off a normal toilet, go to the toilet and clean yourself afterwards with a special aid.

    You can only get on or off a normal toilet, go to the toilet and clean yourself afterwards if someone reminds you or watches you to keep you safe.

    You suffer from incontinence and you can only manage it yourself and clean yourself afterwards if you use a special aid.

    You suffer from incontinence and you can only manage it yourself and clean yourself afterwards if someone reminds you or watches you to keep you safe.

    Four points

    You need someone to help you to get on or off the toilet, go to the toilet or clean yourself afterwards.

    Six points

    You suffer from incontinence (either bladder or bowel) and you need someone to help you to manage it or clean yourself afterwards.

    Eight points

    You suffer from incontinence (both bladder and bowel) and you need someone to help you to manage it or clean yourself afterwards.

    It is difficult as some would consider you not needing support if you can change your ostomy bag alone., though I would think that it would count as a special aid.

    I have an ileostomy bag and so I do understand the stresses of life with a stoma, I also have parastomal hernias and problems with my joints. 

    You can appeal the decision by going through a Mandatory reconsideration 

    Scope
    Senior online community officer
  • GeraldGerald Posts: 213Member Pioneering
    Thanks for that Sam but as I put on this post is right for them not to put in there report the things you tell them and have reports on it with the assessment and Mandatory Reconsiderations even with letters form my doctor and the hospital the and telling them the problems i have with my colostomy and the on there report  know aids or appliances needed or incontinence so is my colostomy bag not a aid is it just a fashion item or a cheap money bag on my side and is it not incontinence if you have know control of you bowel movements as my stoma will work and  have know control of it and my bag coming away and my stoma still working or is this just all in my head how can they put you do not need them and you get ( 0 ) points and Examples of special aids like  collecting devices for  (stomas) and i have Grab rails Incontinence pads for my bed that do not work all the time and a Adapted toilet and the rest of my bathroom is Adapted to my point is it right for the assessments not to put down the things you tell them and not just put down in there report there conclusions and not go with the and   read any documents relating to you from the Doctor or Hospital this is wrong in my eyes or is it just me .
  • GeraldGerald Posts: 213Member Pioneering
    Hi Sam_Scope forgot to put that at this point i am thinking that at the tribunal I go in and take off my colostomy bag and let my stoma  just work as the PIP assessment person put in is report know aids or appliances needs to help with incontinence or toilet needs and the person from the Mandatory Reconsiderations agreed with PIP assessment person and did not look or  read any documents relating to me from my Doctor or the Hospital and the next time I have a assessment doing the same thing and leave a snail trail and a mess like they put it I have know problems with incontinence or toilet needs and do not need aids or appliances with the toilet needs. sorry about the rant in this post .Thank you for your help.
  • poppy123456poppy123456 Posts: 11,912Community champion Disability Gamechanger
    Hi,

    Managing toilet needs or incontinence.

    This activity considers a claimant’s ability to get on and off the toilet, to manage evacuation of the bladder and/or bowel and to clean afterwards.

    This activity does not consider the ability to manage clothing, climb stairs or mobilise to the toilet.

    Notes

    Managing incontinence means the ability to manage involuntary evacuation of the bladder and/or bowel including the use of a collecting device or self-catheterisation and cleaning oneself afterwards.

    Claimants with indwelling (permanent) catheters or stoma are considered incontinent for the purposes of this activity.

    If the urinary tract is normal there will be little risk of incontinence no matter how long it takes to mobilise to the toilet. If there is, however, a bladder problem and the claimant will be incontinent before they reach the toilet, then a commode could be considered as an aid for the bladder condition (toilet needs) not for the mobility problem (mobility needs). Urinary tract conditions that cause urgency of micturition will be relevant in this context – other urinary tract conditions may not be relevant.

    ‘Toilet needs’ is defined as:

    (a) getting on and off an unadapted toilet;

    (b) evacuating the bladder and bowel; and

    (c) cleaning oneself afterwards.

    This means that changing bedding and clothing is not counted with the descriptor. A stoma is classed as a aid. The question here is, do you need assistance to manage your stoma or do you manage it yourself?
  • GeraldGerald Posts: 213Member Pioneering
    Hi,

    Managing toilet needs or incontinence.

    This activity considers a claimant’s ability to get on and off the toilet, to manage evacuation of the bladder and/or bowel and to clean afterwards.

    This activity does not consider the ability to manage clothing, climb stairs or mobilise to the toilet.

    Notes

    Managing incontinence means the ability to manage involuntary evacuation of the bladder and/or bowel including the use of a collecting device or self-catheterisation and cleaning oneself afterwards.

    Claimants with indwelling (permanent) catheters or stoma are considered incontinent for the purposes of this activity.

    If the urinary tract is normal there will be little risk of incontinence no matter how long it takes to mobilise to the toilet. If there is, however, a bladder problem and the claimant will be incontinent before they reach the toilet, then a commode could be considered as an aid for the bladder condition (toilet needs) not for the mobility problem (mobility needs). Urinary tract conditions that cause urgency of micturition will be relevant in this context – other urinary tract conditions may not be relevant.

    ‘Toilet needs’ is defined as:

    (a) getting on and off an unadapted toilet;

    (b) evacuating the bladder and bowel; and

    (c) cleaning oneself afterwards.

    This means that changing bedding and clothing is not counted with the descriptor. A stoma is classed as a aid. The question here is, do you need assistance to manage your stoma or do you manage it yourself?
    No poppy123456 you have put that a (permanent) catheters or stoma are considered incontinent for the purposes of this activity.my stoma is ( permanent ) on the toilet needs i have a adapted toilet Incontinence pads for my bed but the bed still needs stripping and I need help with this as i have no grip in my hands as i have rheumatoid arthritis plus how can the  PIP assessment person put in is report know aids or appliances needs for the toilet and not just read any of the documents relating to me from my Doctor or the Hospital  and give me ( 0 ) points after telling them about my ( colostomy bags come away and my stoma still works as i have know control of it ) so how can they come up with no aids are not necessary with toilet needs so how can that scores (0) points Thank you.
  • poppy123456poppy123456 Posts: 11,912Community champion Disability Gamechanger
    edited February 13
    You won't score any points for needing help with changing your bed. For using an aid with the toilet you should have scored 2 points. What did you score in total for the daily living part? and Did you score any points in managing toilet needs/incontinence at all?


  • GeraldGerald Posts: 213Member Pioneering
    You won't score any points for needing help with changing your bed. For using an aid with the toilet you should have scored 2 points. What did you score in total for the daily living part? and Did you score any points in managing toilet needs/incontinence at all?

    You won't score any points for needing help with changing your bed. For using an aid with the toilet you should have scored 2 points. What did you score in total for the daily living part? and Did you score any points in managing toilet needs/incontinence at all?




    Hi poppy123456 thats my point i got ( 0 ) points  no i Did you score any points in managing toilet needs/incontinence at all 
  • poppy123456poppy123456 Posts: 11,912Community champion Disability Gamechanger
    It should have been 2 points for this. I see by other threads that you're currently waiting for a Tribunal date. Please remember that you need to score at least 8 points for a standard award. Good luck with the Tribunal.
  • GeraldGerald Posts: 213Member Pioneering
    It should have been 2 points for this. I see by other threads that you're currently waiting for a Tribunal date. Please remember that you need to score at least 8 points for a standard award. Good luck with the Tribunal.
    Hi poppy123456  thanks for that i know that and you do and that is not the only part of the PIP report that was wrong i read the report and think did i go or someone else and that is how come i am going to a Tribunal and still know date my problem is if the assessment put down the things i was telling them okay but not to and just put there words and not one thing i was tellling them is wrong and not right.
  • poppy123456poppy123456 Posts: 11,912Community champion Disability Gamechanger
    I'm not sure how i would know that wasn't the only part of the report that was wrong, as i've not seen your report.

    Waiting times for Tribunals are huge right across the country and some areas are waiting more than 1 year for a hearing date.
  • GeraldGerald Posts: 213Member Pioneering
    I'm not sure how i would know that wasn't the only part of the report that was wrong, as i've not seen your report.

    Waiting times for Tribunals are huge right across the country and some areas are waiting more than 1 year for a hearing date.
    Hi poppy123456 sorry i am not getting at you i was just putting up this one point in the report it wasn't the only part of the report that was wrong all the report is wrong so like i have put sorry poppy123456 and thank you for your help.
  • poppy123456poppy123456 Posts: 11,912Community champion Disability Gamechanger
    No problem at all, happy to help :)
  • GeraldGerald Posts: 213Member Pioneering
    Sam_Scope said:
    Hi @Gerald

    So here are the points for toileting needs and PIP

    Managing toilet needs or incontinence is a daily living activity. Add the points you score for this activity with the points you score for other daily living activities to find out if you may be entitled to the daily living component of Personal Independence Payment (PIP).

    When you are looking at how many points you score for going to toilet, think about what help you need most of the time to do it:

    • Safely
    • Well enough
    • Often enough
    • Fast enough

    You score the points for the sentence that is true for most or over half of the time. If more than one sentence is true, you normally only get points for the sentence that is true for the most time. You can only score one set of points for going to toilet, do not add them together.

    No points

    You can get on and off the toilet, go to the toilet and clean yourself afterwards without any special aids.

    You suffer from incontinence, you can manage it yourself and you can clean yourself afterwards without any special aids.

    Examples of special aids:

    • Adapted toilet or commode
    • Incontinence pads
    • Grab rails

    Two points

    You can only get on or off a normal toilet, go to the toilet and clean yourself afterwards with a special aid.

    You can only get on or off a normal toilet, go to the toilet and clean yourself afterwards if someone reminds you or watches you to keep you safe.

    You suffer from incontinence and you can only manage it yourself and clean yourself afterwards if you use a special aid.

    You suffer from incontinence and you can only manage it yourself and clean yourself afterwards if someone reminds you or watches you to keep you safe.

    Four points

    You need someone to help you to get on or off the toilet, go to the toilet or clean yourself afterwards.

    Six points

    You suffer from incontinence (either bladder or bowel) and you need someone to help you to manage it or clean yourself afterwards.

    Eight points

    You suffer from incontinence (both bladder and bowel) and you need someone to help you to manage it or clean yourself afterwards.

    It is difficult as some would consider you not needing support if you can change your ostomy bag alone., though I would think that it would count as a special aid.

    I have an ileostomy bag and so I do understand the stresses of life with a stoma, I also have parastomal hernias and problems with my joints. 

    You can appeal the decision by going through a Mandatory reconsideration 

    Hi Sam_Scope Thanks for that I did the MR as i pointed out to the MR I have stoma and have know control when it works and have my colostomy bags and my rheumatoid arthritis and need help with it at times but the MR put down that the assessment report was right and did not need my colostomy bags  and needed no help with toilet needs or incontinence and Can manage toilet needs or incontinence unaided (0) points so going to tribunal and then now to top it off i have to go to the hospital this week as i have Blood coming out of my stoma and going in to my colostomy bag 
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hi @Gerald, if you have concerns about your stoma and your health, you need to be contacting a medical professional who can help. Please ring your GP, or if you need help urgently, call NHS Direct on 111. 
  • GeraldGerald Posts: 213Member Pioneering
    Hi @Gerald, if you have concerns about your stoma and your health, you need to be contacting a medical professional who can help. Please ring your GP, or if you need help urgently, call NHS Direct on 111. 
    Hi Pippa_Scope  Thank you for that i go to the hospital tomorrow to see them Thank you 
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