Page 1 of 3 123 LastLast
Results 1 to 10 of 27

Thread: Home Haemodialysis - kidney failure and the PIP process

  1. #1

    Smile Home Haemodialysis - kidney failure and the PIP process

    Good Evening folks,

    I am in the process of helping my husband with his PIP application.

    We do home haemodialysis 5 days a week, each therapy session is 3 hours long. (Plus half and hour before and after, needling and doing the machine.)

    As such we are claiming under Managing Therapy. We have a letter of support from both the Haemo Unit and our Consultant as he does need constant supervision and assistance during the whole therapy treatment.

    I have come across a post by another carer who says they were unsuccessful in their claim, even after an appeal.

    I am wondering if there are any other dialysis patients out there who have or who are going through the PIP process.

    I would love to hear of your experiences.

    Many thanks.

  2. #2
    Senior Member
    Join Date
    Feb 2015
    Posts
    257
    It's HOW you are affected by the condition that scores points, not the condition itself. This is why applicants often fail. If you don't explain the nitty gritty the decision maker will assume there are no issues, and they aren't medically qualified so it's even mor important to give as full a picture as possible.

  3. #3
    Senior Member
    Join Date
    Nov 2010
    Posts
    484
    Apologies I know nothing about dialysis, during this treatment, can you move about freely(with a drip?) During the treatment could you make a simple meal? use the bathroom? Im assuming you cant get out of the house to socialise? The reason I ask, is there is a guideline that if you cant do something for part of the day then you are deemed as not being able to do it for the purposes of pip. Ie you can make breakfast but by lunchtime you are too tired/painful to cook/eat the rest of the day. Think of all the things you cant do during the 4 hrs. Also how do you feel when your not having the treatment ie the 2 days off. Try and think of your difficulties generally.

  4. #4
    thanks for your replies..........

    When you do haemodialysis you are hooked up to a machine. It takes your blood out of your body, filters it of toxins and remove fluid and then puts the blood back in you.. It does this umpteen times during a session. You cannot move out of your chair. My husband suffers greatly with low blood pressure when on the machine. (As do so many.) He has "crashed" many a time when he did the dialysis at the hospital. When the blood pressure drops low, you can pass out. You need to have saline to bring your blood pressure back up and to regain consciousness. Alaska, I have written lots of "extra information" about the help and assistance my husband needs during therapy in our draft answer for the PIP form. I hope I've done enough. If he feels unwell, I need to adjust the parameters on the machine and alter the rate/pump speed to slow down the blood flow leaving and entering the body for example. There are arterial and venous pressures ..... sometimes I need to re-tape or "boulster" a needle with a pad to raise it into a new position to lower the pressure.

    Though he's been doing dialysis for a few years, we have only just started home haemodialysis.

    He doesn't urinate so there is no issue about the toilet thing whilst he's hooked up.
    However, a side effect of low blood pressure can be diarrhoea. You cannot get out of your chair to go to the toilet. He needs to be removed from the machine. His 2 needles need to be capped off........... once he is back, then he needs to be reconnected again. You have to be quick, you have a 10 minute window or the blood will clot in the machine.

    oimum, if you google or you tube haemodialysis you will see what I mean about being hooked up.

    I take your point about food preparation. There's no way he can do anything after dialysis... apart from sleep. Usually he is ok doing his breakfast and making a sandwich for lunch. Usually he is ok on his 2 days off.... but sometimes the effects of his treatment the night before can cause him to feel pretty crap the next day and he just sleeps on and off. Then sometimes on his day off he can stay awake till evening. Side effects of his kidney failure -fatigue,anemia and low blood pressure all have a knock on effect.

    After dialysis he will feel quite ill. It is referred to as the "dialysis hangover." He will be dizzy, extremely tired, feel sick, dozey. He just lays down on the couch until I have cooked tea (I'm northern...) and then goes to bed. He can't do much else after dialysis.
    The next day he can still be rough............. the next day he can feel quite ok. It's unpredictable.

    Hey we may get a good transplant one day. You never know. The problem is he has had so many blood transfusions in the past, he is what they call "highly sensitised" and he would react to 98% of the population and his body would reject their kidney. So he only has a 2% chance of finding a good match. We've been on the list for 7 years. We know we are in for the long haul hence the decision to do treatment at home.

  5. #5
    Senior Member
    Join Date
    Mar 2014
    Location
    Shropshire
    Posts
    1,484
    YES there is another home-haemo patient on here, also going through filling in PIP. He is my partner and I'll alert him to this post. He'll get back to your shortly.

  6. #6
    Senior Member
    Join Date
    Mar 2014
    Location
    Shropshire
    Posts
    1,484
    In answer to your question oimum. No to all or most of the above. You are connected to a machine by needles and tubes in your arm (machine about size of small freezer) and there you sit for 3 0r 4 hours. Its cleaning your blood of all the toxins healthy kidneys usually filter out. No you can't go to bathroom. Or make a meal. How do you feel after? Pretty shit if my b/friends anything to go by.
    But I'll let the lad pontificate himself when he sees said post.

  7. #7
    Hi folks,
    I posted a reply last night and got the message it will need to be approved............ not on yet........... thanks reddivine....

  8. #8
    Senior Member
    Join Date
    Dec 2014
    Posts
    1,681
    I would strongly urge you to get some professional help with completing the form.

    I hope you will find this link helpful:

    http://www.kidneypatientguide.org.uk...hp?f=2&t=12177

    Although it is a couple of years old there are some very useful links as to where you can find help and support.

  9. #9
    Senior Member TheFlyingKidney's Avatar
    Join Date
    Feb 2012
    Location
    Shropshire
    Posts
    358
    Quote Originally Posted by helpfulsoul View Post
    Good Evening folks,

    I am in the process of helping my husband with his PIP application.

    We do home haemodialysis 5 days a week, each therapy session is 3 hours long. (Plus half and hour before and after, needling and doing the machine.)

    As such we are claiming under Managing Therapy. We have a letter of support from both the Haemo Unit and our Consultant as he does need constant supervision and assistance during the whole therapy treatment.

    I have come across a post by another carer who says they were unsuccessful in their claim, even after an appeal.

    I am wondering if there are any other dialysis patients out there who have or who are going through the PIP process.

    I would love to hear of your experiences.

    Many thanks.
    I'll get back to you later today, hopefully as I'm off out.

    http://www.benefitsandwork.co.uk/sur...fe-on-benefits

    Also 4Up on Facebook.

    Disability Rights UK,

    Mind..

    Turn2Us


    I'll post some links/tips etc later, as you can't directly PM on this forum I'll see if I can get a message to you somehow. or you can contact

    I'm about to get my PIP form sent off, (after copying and scanning the form and all the documents)

    I've no idea what the outcome will be, expecting a Face To Face with an inexperienced tick boxer but we'll see. For my DLA I went to tribunal (and got unanimous agreement from the whole panel as to my entitlement.) And have had my MP involved when the DWP illegally stopped my benefits.

    Good luck..

  10. #10
    Senior Member
    Join Date
    Apr 2014
    Location
    England
    Posts
    436
    Hello Helpfulsoul

    We have seen a few posts on forum regarding PIP claims and kidney failure, PIP is woefully lacking in understanding and processing of Bladder/bowel/kidney failure problems. Equating them in my opinion, with issues that are far less impacting.

    Moan over, I wonder if your husband is more tired than before his kidney failure, making him less able to cook, or socialise.
    Is he on medication that gives him unwanted side effects that impact his ability to cook, or take his medications, or enjoy hobbies that he previously enjoyed.

    Good luck.
    Last edited by buble48; 13-11-16 at 17:48.

Similar Threads

  1. Happy World Kidney Day 2016
    By TheFlyingKidney in forum News and general discussion
    Replies: 0
    Last Post: 10-03-16, 12:05
  2. dla tribunal failure
    By James2344 in forum Benefits - help & advice on disability benefits, incapacity benefits, ESA and DLA
    Replies: 4
    Last Post: 23-09-15, 22:08
  3. Blue Badgee refusal - Failure to follow due process
    By DPDance in forum Motoring - help & advice on cars for disabled people, Blue Badge and Motability
    Replies: 6
    Last Post: 04-02-15, 13:07
  4. PIP reconsideration failure, next option?
    By sothisishowitis in forum Benefits - help & advice on disability benefits, incapacity benefits, ESA and DLA
    Replies: 19
    Last Post: 31-01-15, 17:49
  5. Good News for Kidney Patients, for now
    By TheFlyingKidney in forum News and general discussion
    Replies: 0
    Last Post: 29-01-15, 12:02

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •