Claiming PIP when you're completely unable to leave bed? DWP won't accept she can't prepare a meal — Scope | Disability forum
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Claiming PIP when you're completely unable to leave bed? DWP won't accept she can't prepare a meal

KarenA
KarenA Member Posts: 44 Connected
Has anyone had experience of claiming PIP when you are literally unable to leave your bed? 

My sister has been very ill and is more or less immobile . She is unable to move her legs, stand, sit without support or walk. 
 We have been trying to claim PIP. The DWP wont accept that she cant prepare a simple meal. They say its irrelevant whether she can get in a wheelchair or even get through the kitchen door( doorframe very small,  too narrow for wheelchair to pass through, even if she could actually get into a wheelchair)
 This seems very unfair to me. How is she meant to prepare a meal from her hospital bed? She doesn't live in the kitchen, she lives in the dining area of her house. She cant physically reach the oven or microwave. 

Comments

  • calcotti
    calcotti Member Posts: 3,012 Disability Gamechanger
    The physical constraints of the property she lives in are not relevant. The test is intended to assess her ability/degree of difficulty.

    That is not to say that there are not other reasons to do with her difficulties that mean she should get points for this descriptor.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • KarenA
    KarenA Member Posts: 44 Connected
    Thank you for replying.  I've not explained things very well. She cant leave her bed. So how can she cook? Am I being unreasonable in thinking the fact that she cant stand, walk or transfer to a wheelchair means she is unable to prepare a simple meal? Does this not count towards points for this descriptor? 
  • calcotti
    calcotti Member Posts: 3,012 Disability Gamechanger
    KarenA said:
    Thank you for replying.  I've not explained things very well. She cant leave her bed. So how can she cook? Am I being unreasonable in thinking the fact that she cant stand, walk or transfer to a wheelchair means she is unable to prepare a simple meal? Does this not count towards points for this descriptor? 
    Of course you are not being unreasonable which is what my second paragraph referred to. The point of my first paragraph is that narrow doorways are not relevant.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • KarenA
    KarenA Member Posts: 44 Connected
    So how can the DWP justify giving her 2 points for preparing a simple meal. It just defies logic. When she was assessed, the assessor kept asking what aids she might need in the kitchen to cook, my sister kept telling her she cant get into the kitchen, she cant stand up. But the assessor didnt listen. So it made me wonder if this wasnt a consideration 
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger
    You say she’s been very ill. That makes it sound like this is not necessarily a long term thing? Generally the issue in cases like this is the quality of what was put in the PIP 2.
  • KarenA
    KarenA Member Posts: 44 Connected
    Hi. She has been ill for 6 years. In her bed for 2. There seems no prospect of her recovering as her legs never heal. She has one infection after another,  on massive doses of antibiotics,  constantly being changed by the hospital to try and kill the infections once and for all. She has nearly died twice( hospital) warned hubby might not make it through the night) and had three bouts of sepsis in under 2 years. It takes over a year to recover from one bout. She hasnt stood up in two years. No muscle tone left apart from anything else. If she does recover, it will be a very long road. I'm not sure what else I can say
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Hi there 

    I can empathise with this having had my leg amputated due to severe foot infections leading to sepsis , only way to end all infections wS to lose the limb 

    I'm not suggesting this is the case here but judt trying to show my experience 

    As for pip have you put in the mandatory reconsideration I would encourage you yo get expert advice with this from welfare rights as I think it may be a matter of not putting her case forward in the right way 

    I would keep fighting and take it to tribunal if needed 

    Here to help with my experience in hunan resources and employment rights 
  • KarenA
    KarenA Member Posts: 44 Connected
    When you say welfare rights, do you have a particular organisation in mind? I dont really know who to ask. We are already 2 weeks late in asking for MRC as my sister was too ill and depressed to face anything  so she hid the fact that they had made a decision  so I know I've got a fight on my hands. It just seems so unreasonable to me to deny her points on this when she is literally trapped in bed. How they expect her to cook is beyond me
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Welfare rights us an organisation in its own jyst Google and see where your local centre us or visit their website 

    You can get 13 months to submit a mr if there us a valid reason for the delay so don't let the time lapse put you off 

    There is lots info on here in our pip section too about appealing a decision 

    For MR the vest is yo ho through the descriptors you think should score more points and give 2 real examples of what happened last time the activity was performed 

    You have only mentioned the preparing meal descriptor did she score points in other areas at all,  was she given any award at all ? Will the preparing food aline give her the award she deserved 

    Lots of questions I know only Tring to get more 7dea so we can help 
    Here to help with my experience in hunan resources and employment rights 
  • KarenA
    KarenA Member Posts: 44 Connected
    They under scored her in all areas. So she cant wash her upper body, needs physical help with toileting, cant dress upper body, any of these things would have taken her to the enhanced rate of daily living. Mobility they just blatantly ignored what was said by us and said she could walk 20 metres but no more than 50 metres. This was to ensure she didnt getvthe enhanced rate if course. She literally hasnt got out of bed for two years except when taken to hospital by 999 ambulance 
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Did she get any award at all 
    Here to help with my experience in hunan resources and employment rights 
  • calcotti
    calcotti Member Posts: 3,012 Disability Gamechanger
    As janer says you have a long stop of 13 months to request an MR. If DWP refuse to accept it because it's more than a month since the decision you can still appeal the decision to a tribunal.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    It may also be the case as was.mentioned that the dwp don't see this as ongoing condition as infections can clear up 

    Did you send any medical evidence detailing the condition and the prognosis 

    Just advice from what I have read I may be wrong but I get the impression her case may not have been presented in the best way and why your best chance is to do lots of research or get some expert advice for the mr 
    Here to help with my experience in hunan resources and employment rights 
  • KarenA
    KarenA Member Posts: 44 Connected
    Thanks for all your advice. I thought they would contact the GP or hospital consultant. They say not to ask for any reports you dont already have. 
  • calcotti
    calcotti Member Posts: 3,012 Disability Gamechanger
    KarenA said:
    Thanks for all your advice. I thought they would contact the GP or hospital consultant. They say not to ask for any reports you dont already have. 
    You need to fully explain how you are affected and the difficulties you have. They may contact your GP and/or consultant but generally don’t. It is correct that you don’t need to ask for special reports. PIP is awarded on the basis of impact not diagnosis. The person who best understands the impact is the person who has the problems.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • KarenA
    KarenA Member Posts: 44 Connected
    Well we obviously thought we had explained in some detail how she was affected. We explained about the pain, not being able to sit up unsupported, not being able to move her legs, not standing, not being able to wash her body or hair or go to the toilet without physical support, how breathless she got, how long it all took, how long it took to recover just from having a wash,  the extra pain relief she needs before the dressings are changed, the time it took for her to recover after her dressings are changed, we even sent photos in of her legs showing them to be a bloody pulp where the ulcers have eaten away at nearly the whole of her lower legs, how they sometimes have arterial bleeding during dressing changes and then it takes the two nurses even longer as they have to put pressure on the legs to stop the blood pumping out, we honestly did go into as much detail as possible. She is on a cocktail of drugs and pain relief. The ulcers have gone down to nerve endings so its like having electrical shocks going through her legs 24 /7.  Some drugs are controlled drugs. But the assessor said she was only on mild pain relief. And kept banging on about what aids would she need to help her in the kitchen. We kept saying she cant get in the kitchen, she cant stand or get out of bed. She raised the idea of a wheelchair but we pointed out she cant transfer to a chair and if she did, the chair wouldn't go through the doorway anyway.  But now the reports come back focussing on not being responsible for the building. She does have a decent GP though so we wre going to ask him to write us a letter about her illnesses.and in the meantime, I'll look online for some help. 
  • KarenA
    KarenA Member Posts: 44 Connected
    She got standard rate for both sections. But I honestly think she warrants the enhanced rate
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    OK sounds like you explained well 

    All you can do is put in the mr and hope a different decision maker changes the decision 
    Here to help with my experience in hunan resources and employment rights 
  • KarenA
    KarenA Member Posts: 44 Connected
    I reackon I'll be off to a tribunal personally. They ve had a good chance to read everything,  the only thing really is to see if they accept a letter from the gp
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger
    GP will be a waste of time. They don’t cook with her and have nothing medical to say on the matter beyond repeating what you tell them. The problem here is that you’ve talked a lot about pain and meds and bodily functions which can’t be performed but you don’t seem to have addressed the descriptor itself i.e. I can’t do this because … and here are two example of what happened last time I attempted this. That would completely explain the under-scoring across the board.
  • KarenA
    KarenA Member Posts: 44 Connected
    Ok. So I need to go through this step by step.  So she cant cook because she cant stand or walk or get into a wheelchair. She was told she needed complete bed rest to allow the gaping holes in both legs to have the best chance of recovery. Part of her foot has been ulcerated too. So when she did try and stand, this meant she was standing on raw flesh almost down to the bone. The pain left her breathless and was excruciating.  She could only stand for a minute and then collapsed. This was a long time ago now because she has been in hospital twice now with sepsis since. She cant freely move her legs. She uses a hoist to move them to help her sit up in bed. She is trussed up like a mummy from above the knee down , to try and compress the skin so that it might miraculously join up . She needs 2 new knees but obviously cant at the moment,  so that's an added difficulty.  
    What else can I add to explain this? Sorry to bang on, I feel like I'm trying to claim something that she isnt entitled to . She does too which is why it's taken me so long to get her to even apply.
     I cant see her ever walking again. Her legs wont heal. The obvious solution would be to remove them. The drs dont know how she survived the last two bouts of sepsis and doubt she would a forth. Her heart is in trouble too, so I guess that's why amputation has not been suggested thus far. 
    I dont know how I can give two examples of why she cant cook.
    Grateful for your help. 
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Explain it like you have above 

    Go through each descriptor 

    Again I would contact welfare rights for some support 
    Here to help with my experience in hunan resources and employment rights 
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi Karen, oh my word! Your poor sister is suffering so much and the DWP need to listen better to her situation.
    A few of your sister's problem are like mine.
    I have Primary Progressive MS. I haven't walked for around 20 years and haven't been able to stand for around 9 years.

    I use an electric wheelchair, a hoist and a hospital bed, and a riser recliner chair.
    I have help with all personal care and cant reach anything in the kitchen so cant cook.I don't have the strength to carry pans etc.

    I went from DLA to PIP around 3 years ago. It worried me sick, having to justify my need for PIP.
    It was before covid, so an assessor came to my house. She was pleasant but official. She asked me to raise my legs. I have wasted muscles, so couldn't do it.

    The report from her gave me full PIP, but she said I could go to town alone and cook a meal....both are wrong, but I didn't need to fight it.

    Your sister does need to fight this.

    The DWP don't want to know about any diagnosis, but they do want to know if a condition will or wont improve.

    Does your sis have a consultant? I sent letters from hospital appointments, carers' letters, and prescription forms.
    GPs are rarely contacted by DWP. Perhaps you could a letter from the nurses detailing their input.

    Have you tried sending in a Mandatory Appeal? These sometimes change DWP decision..or as you say, you may have to go to tribunal.

    All this stress and worry is horrible.

    I hope you get somewhere with the RIGHT decision.

    Best wishes, Polly xxxx
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger

    KarenA said:
    Well we obviously thought we had explained in some detail how she was affected. We explained about the pain, not being able to sit up unsupported, not being able to move her legs, not standing, not being able to wash her body or hair or go to the toilet without physical support, how breathless she got, how long it all took, how long it took to recover just from having a wash,  the extra pain relief she needs before the dressings are changed, the time it took for her to recover after her dressings are changed, we even sent photos in of her legs showing them to be a bloody pulp where the ulcers have eaten away at nearly the whole of her lower legs, how they sometimes have arterial bleeding during dressing changes and then it takes the two nurses even longer as they have to put pressure on the legs to stop the blood pumping out, we honestly did go into as much detail as possible. She is on a cocktail of drugs and pain relief. The ulcers have gone down to nerve endings so its like having electrical shocks going through her legs 24 /7.  Some drugs are controlled drugs. But the assessor said she was only on mild pain relief. And kept banging on about what aids would she need to help her in the kitchen. We kept saying she cant get in the kitchen, she cant stand or get out of bed. She raised the idea of a wheelchair but we pointed out she cant transfer to a chair and if she did, the chair wouldn't go through the doorway anyway.  But now the reports come back focussing on not being responsible for the building. She does have a decent GP though so we wre going to ask him to write us a letter about her illnesses.and in the meantime, I'll look online for some help. 
    This pretty much nails why this has gone wrong. A whole pile of detail as to why a person can’t physically move to a kitchen and literally nothing about the descriptor itself. You need to re-read the descriptors. If your answer to each one was “can’t do it, stuck in bed” then yes the claim will fail. Take a look at https://pipinfo.net/activities/preparing-food. and especially the definitions and accompanying case law. The test is not “can you even get to a kitchen?”. The test is “if you were in a kitchen and needed to prepare a meal what would functionally inhibit it”. 

    Your PIP 2 answer should have had 1 sentence on why she can’t physically get to a kitchen and at least 3 paragraphs on bending, lifting, standing, reaching etc.

    A decent MR could fix this but it sounds like you’re going to have to readdress each descriptor with a different focus. 
  • KarenA
    KarenA Member Posts: 44 Connected
    Ok thank you. That makes it clearer for me now. 
  • KarenA
    KarenA Member Posts: 44 Connected
    So, my sister was too scared to ask for MC as she was frightened they would take points away, and she really needed the money.  She has just died from her illnesses. Her heart just couldn't manage the continued fight against infection. It just went on too long, one round of antibiotics after another, nothing worked for long.  

    I'm so angry that they didnt give her the points she deserved. I wondered if anybody had ever argued with the DWP after someone had died to try and get her the award she needed. 
  • Justcheckingin15
    Justcheckingin15 Member Posts: 186 Pioneering
    @KarenA, I am so terribly sorry for your loss, others on here may offer you the info your asking.
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger
    edited August 4
    I do think you have to remember that the reason she didn’t get the points was because the claim was poorly presented, as highlighted above, and not because of some obvious failing on the part of DWP.
    It is possible to continue with the claim. You need to quickly sort out an appointeeship after death and go from there. I think it founders because the MR hadn’t been started but there is nothing to be lost and any arrears would be paid into her estate. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,560 Disability Gamechanger
    I'm so sorry to read about the problems your sister faced, & her death. You tried to do so much for her, so appreciate how very much the loss of her must mean to you.
    I know how I felt after the death of our youngest daughter...there had to be a reason, or the loss of her didn't make any sense. I'm probably not putting it very well, but that's how I felt; there just had to be a reason for her short life. Took me years to find it, but, as this was a very long time ago, & before I had access to the internet, I eventually found it once I could research with the internet, & I hope, believe, helped others.
    This might not be how you feel, but you could help others with your sister's disorders by supporting appropriate charities. You will also hopefully remain a member here, & help others. I could be wrong, but I believe that by helping others, it doesn't necessarily make sense about your loss, but it helps, if you can help others. Your sister's life mattered.
    Again, sorry, I'm possibly not putting it very well, but please know we're all here to support you, talk to you whenever you need.
  • KarenA
    KarenA Member Posts: 44 Connected
    How do I become her appointee if she has already died? She did write to the DWP at the time of her claim saying that she wanted me to deal with her claim as she was too ill to deal with it, butvtgey ignored it and wrote to her anyway  . Will this be enough do you think? Her husband really needs the money now. Her illness cost them so much money as she was buying her own pads and bandages etc to wrap her legs.  And all her sickness pay had ended long ago. 
  • KarenA
    KarenA Member Posts: 44 Connected
    Ps, thanks for all your kindness and help  
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger
    KarenA said:
    How do I become her appointee if she has already died? 
    The process is pretty much the same as becoming an appointee if she were living. It just operates under a different regulation. You will likely need to explain this to call centre staff as most will not have heard of the idea and will deny it exists. See https://www.gov.uk/become-appointee-for-someone-claiming-benefits
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    edited August 5
    Hello @KarenA

    I wanted to add my condolences to those already expressed.  I'm so sorry to hear about the loss of your sister.  It sounds as if she put up a real fight to the end in dealing with her conditions and I can't imagine how hard that must have been to see, being someone you loved so dearly.  If you ever need any help with managing your grief, please do reach out to someone you feel comfortable talking to.  Be that friends, family, your GP or maybe a specialist organisation like Cruse.

    I hope Mike's advice about becoming an appointee will help you take the next steps in continuing the PIP claim.  While thinking more about the expenses your sister's husband faced, I wonder if he'd be entitled to the Bereavement Support Payment?  Eligibility for this is outlined as:
    You may be able to get Bereavement Support Payment (BSP) if your husband, wife or civil partner died in the last 21 months.

    You must claim within 3 months of your partner’s death to get the full amount. You can claim up to 21 months after their death but you’ll get fewer monthly payments.

    Bereavement Support Payment has replaced Bereavement Allowance (previously Widow’s Pension), Bereavement Payment, and Widowed Parent’s Allowance.

    You could be eligible if your partner either:
    • died because of an accident at work or a disease caused by work
    When they died you must have been:
    • under State Pension age
    You cannot claim BSP if you’re in prison.
    And here's a further link to How to claim

    Also, he might want to check his eligibility for other benefits using Scope's benefits calculator.  This gives an indication of what people may be entitled to; while for more personalised support, he could find a local welfare advisor through the Advice Local website.

    Thinking of you and your family at this hard time.  Please do lean on our community if we can help with anything else.
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  • KarenA
    KarenA Member Posts: 44 Connected
    So do you know what regulation I need to quote to become an appointee after someone dies? The link above just talks about people who are living
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger
    It’s the same process. You don’t need to quote the regs as that will mean literally nothing to call centre staff. You simply need to persist. 
  • KarenA
    KarenA Member Posts: 44 Connected
    I'd just like to know so I know I'm on solid ground. I'd like to read it for myself . I find it hard to "persist" if I dont know the regulations for myself. They will just say she is dead, I cant argue with that can i
  • mikehughescq
    mikehughescq Member Posts: 7,493 Disability Gamechanger

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