PIP, DLA and AA
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Today I got a copy of my consultation report for PIP

colin72colin72 Member Posts: 7 Listener
edited August 2020 in PIP, DLA and AA
Hello All , Today i got a copy of my Consultation Report for PIP and upon looking through it , it seems like the assessment Centre has marked me down , I have Chronic COPD and Bronchitis/emphysema and high blood pressure 
I have 4 Neighbours that cook me food as they know cooking some foods triggers my Asthma off and i will not eat when my asthma is bad 
I have bath rails on my bath to get in/out off 
I have a CPAP machine witch i use 7-9 hours a day every day of the year / without it I can not function 
I can not walk far unaided , 50 meters would be my max distance before I am out of breath and looking for something to sit down to rest or something to lean on for ten or so minutes before trying to walk again 
I fall asleep on public transport due to my sleep apnoea at times / but I dont when I drive and I am a blue badge holder 
it seems like the report has down scored me in all of the areas that gives me the full reward for PIP , I would have liked a home assessment instead of a phone assessment 
How can a machine I use every day not be classed as a medical aid / supervision / assistance device used for more than 14 hours per week , this machine keeps me alive , keeps me breathing when i stop breathing 
SEEMS like i have big fight on my hands 

Replies

  • colin72colin72 Member Posts: 7 Listener
    Hello All , Today i got a copy of my Consultation Report for PIP and upon looking through it , it seems like the assessment Centre has marked me down , I have Chronic COPD and Bronchitis/emphysema and high blood pressure 
    I have 4 Neighbours that cook me food as they know cooking some foods triggers my Asthma off and i will not eat when my asthma is bad 
    I have bath rails on my bath to get in/out off 
    I have a CPAP machine witch i use 7-9 hours a day every day of the year / without it I can not function 
    I can not walk far unaided , 50 meters would be my max distance before I am out of breath and looking for something to sit down to rest or something to lean on for ten or so minutes before trying to walk again 
    I fall asleep on public transport due to my sleep apnoea at times / but I dont when I drive and I am a blue badge holder 
    it seems like the report has down scored me in all of the areas that gives me the full reward for PIP , I would have liked a home assessment instead of a phone assessment 
    How can a machine I use every day not be classed as a medical aid / supervision / assistance device used for more than 14 hours per week , this machine keeps me alive , keeps me breathing when i stop breathing 
    SEEMS like i have big fight on my hands
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi and welcome,

    Have you added up the recommended points in the assessment report by comparing them with the PIP descriptors online?

    Your CPAP machine, are you able to put this on and remove it yourself? If not then who does this for you and why are you unable to do this yourself? were any points recommended here?

    preparing food, How many points if any were recommended here?

    There are 10 PIP acrivities for the daily living part and you've only mentioned 2 of them here. Just because you think you should have scored full points for these 2 to give you Enhanced daily living, doesn't mean you'll actually be able to score that many.

    More information is required to try to help you further.



    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited August 2020



    Have you added up the recommended points in the assessment report by comparing them with the PIP descriptors online?

    Your CPAP machine, are you able to put this on and remove it yourself? If not then who does this for you and why are you unable to do this yourself? were any points recommended here?

    preparing food, How many points if any were recommended here?

    There are 10 PIP acrivities for the daily living part and you've only mentioned 2 of them here. Just because you think you should have scored full points for these 2 to give you Enhanced daily living, doesn't mean you'll actually be able to score that many.

    More information is required to try to help you further.




    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.
  • Ross_ScopeRoss_Scope Scope community team Posts: 2,883 Disability Gamechanger
    edited August 2020
    Hi @colin72, welcome to the community, nice to have you aboard :) 

    It's a shame to hear your outcome wasn't what you were hoping for. You mentioned at the bottom there that you have a big fight ahead, I take that to mean you'll be going through the appeal process starting with a mandatory reconsideration? If so, you can read about that process here.

    How much, if any, medical evidence did you send in to accompany your claim?

    Again, welcome to the community! I'm sure others will be along to advise on your circumstances and I will move the discussion to our PIP, DLA and AA section for you :) 
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  • colin72colin72 Member Posts: 7 Listener
    I have gone through the report the descriptors online and for example i should score 2 points just for using bath rails to get in/out of the bath , and the assessor has ticked a, can wash and bathe unaided 
    I have to sit down to prep food , but as for cooking it some makes me breathless , so at times 3-4 days a week my friends brings me a meal most of the time direct from their oven , and the assessor has again ticked , a , can prepare and cook a simple meal , even thou i have sleep apnea and can fall asleep 
  • colin72colin72 Member Posts: 7 Listener
    as for the CPAP i do this my self but the machince has built in alarms for thing like a fallen of face mask 
  • colin72colin72 Member Posts: 7 Listener
    I did not have letters from the medical pro,s , but gave my doctors details and the hospital details of the clinic i am under , my COPD will never get any better I have had this for 20 years , basicly I will die from this my heart will gave out before my cpap machine does , when i was in the sleep clinic 15 - 20 years ago they were shooked that i stopped breathing over 200 times in a space of an hour 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Were the aids recommended by an Occuaptional Therapist? Or did you buy them yourself?

    If you need to sit while preparing food then scoring 2 points is possible for using an aid. Just because someone brings you the food, it doens't mean you'll score the maximum points for this activity.

    I'm also a little confused here because you've stated your friends bring you food 3-4 days a week but then state they bring you food most of the time, so which is it? 3 - 4 days a week isn't most of the time.

    What about the CPAP machine, do you manage this yourself? If not then why can't you manage this and who assists you?

    I also note that you mention driving? with sleep apnea?
    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.
  • colin72colin72 Member Posts: 7 Listener
    friends help out 3 or 4 days a week , the Cpap machine is supplied and matianed by the hospital , i put on the mask and press the on / off button , a alarm goes off if the is a leak from the mask witch wakes me up , as for driving no restickions if i keep using the machine 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    So you don't need supervision, prompting or assistance to use the CPAP machine, this means you won't score any points here because you manage this yourself.

    Why do your friends bring you food? You mention being able to sit while you prepare your food? why can't you cook food yourself? what happened the last time you attempted this activity? who seen it, where were you? this is what they will want to know. They very rare contact anyone for any evidence, the onus is on you to prove you qualify. It's not their responsibility to prove anything.

    If you stated in the form that your friends bring you food 3-4 days per week but brings you food most of the time then that's a contradiction to start with. You need to be very careful what you say or write.

    You can't do anything until the decision's been made but i honestly think you need some expert advice here. To start this put your postcode into this link.

    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.
  • woodbinewoodbine Member Posts: 3,522 Disability Gamechanger
    Hi @colin72 so can we ask how many points did you score on care and on mobility?

     I am amazed that you say you fall asleep on buses BUT still drive even more so when you say you fell asleep 200 times in one hour during test, have you informed the DVLA at any point?
    It's almost pointless sending details of doctors /consultants as they rarely if ever contact them, PIP is all about the care/mobility needs you have NOT the illness.
    I'm afraid that you do have a fight on your hands, my advice is get some help from CAB or welfare rights, your next step once you get the decision IF its not what you expect is an MR .
    good luck
    my advice is given freely and is correct to the best of my knowledge.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    This is very confusing because there's 2 threads with exactly the same question from the same person.

    @Ross_Scope please can you emerge this thread with this one https://community.scope.org.uk/discussion/73567/pip-assessment#latest They are both identical questions, which is very confusing.



    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    woodbine said:
    Hi @colin72 so can we ask how many points did you score on care and on mobility?

     I am amazed that you say you fall asleep on buses BUT still drive even more so when you say you fell asleep 200 times in one hour during test, have you informed the DVLA at any point?
    It's almost pointless sending details of doctors /consultants as they rarely if ever contact them, PIP is all about the care/mobility needs you have NOT the illness.
    I'm afraid that you do have a fight on your hands, my advice is get some help from CAB or welfare rights, your next step once you get the decision IF its not what you expect is an MR .
    good luck

    Totally agree with your thoughts here and this is what rang alarm bells for me too.
    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.
  • chiariedschiarieds Community champion Posts: 7,435 Disability Gamechanger
    Hi @colin72 - & welcome to the community. I'm sorry about the disorders you're suffering, however, PIP is not awarded due to any disorder, rather the impact it has on a person to carry out specific activities of daily living &/mobility. It's really important to understand that.
    You undoubtedly need a CPAP machine each night, but PIP is only about the problems you face during the day. It certainly is an aid, but not one used during the day, & any night time needs are not taken into consideration.
    It's great your neighbours bring you meals, but, if you could pop these, or a bought ready meal into a microwave, this would only score 2 points.
    To get a standard award of PIP you need 8 or more points; for an enhanced award 12 or more points.
    Once you receive your decision letter, it does sound like you would benefit from some local advice as mentioned above.
  • colin72colin72 Member Posts: 7 Listener
    Woodbine , you miss read ...... I do not fall asleep 200 times a hour , When i was tested I STOP Breathing up to 200 times per hour , the Cpap machine does the breathing for me while I am sleeping , If i stop using the machine , I can not drive . I see the hospital twice a year for the Cpap , if I see the hospital 4 times a year then I will be place on driving restrickions as the hospital has my consent to contact DVLA , as for falling asleep on buses it has to do with lack of concertration becuase my mind is not active , like your are when driving , yes I have a fight on my hands , and most of this is my own fault for not wanting to get help along my way in life , I am A MAN and a stuborn one at times , its like i have spent most of my life getting people to see my illness as a disabiilty while others say there,s nothing wrong with you . its hard to explain things in a forum 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    PIP is not about night time needs. I do understand that you use a CPAP machine at night but you don't need any assistance to be able to use this, so no points will be scored for managing a health condition (activity 3)

    You don't need to have got any help in the past for any health conditions to be able to successfully claim PIP. Lots of people claim is without any problems and they don't receive any help. It's not about the help you receive, it's about the help you need.

    You have very little understanding of the PIP descriptors and what they mean and that's not unusual as a lot of people don't. A lot of people think that they can score x amount of points but when you take a closer look and do some research you may find that it's not possible to score as many as you think, likewise, it maybe possible for someone to score more than they think.

    Medical evidence is not needed when claiming PIP. Most medical evidence will not state exactly how your conditions affect you, it will only ever state the basics like diagnosis, medication etc etc. Most of the time a diagnosis, is not in question because PIP isn't about a diagnosis, it's how those conditons affect your ability to carry out daily activities based on the PIP descriptors.

    Anecdotal evidence will be the best thing you can send to support your claim.. a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you, which should include things like, where you were, what you were doing and who seen it. Nothing more is needed other than this. when writing the MR letter this is what you should do and not concentrate on what was written in the report because that won't get you a PIP award.

    You need to be careful of contradictions too, if they were noticed here then they were likely noticed in the form you filled in, if that's what you wrote in the form.

    I still advise you to get some expert help and advice and use that link i posted above.
    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.
  • colin72colin72 Member Posts: 7 Listener
    So basicly if i wasnt using the cpap machine i would be getting PIP , because I would be in a sleep deprived drunken state 24/7 unable to care for myself in a meanfull way 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    1/ No one said you wouldn't be entitled.  You may still be entitled to PIP because no one here knows exactly how your conditions affect you.

    2/ i can only see that as a good thing, that the CPAP machine helps you.
    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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @colin72 and a very warm welcome to the community. Just to let you know that I have merged your two threads so all of the information is in one place.

    I imagine it's really frustrating to have not been given the points. Due to the inflexibility of PIP it can cause some people to not receive the points they believe they should. 

    This page from Citizen's Advice breaks down the different descriptors which you might find useful.
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