Employment and Support Allowance (ESA)
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Very frightened

Hello I'm not sure any one can help me at all in fact but I'm really hoping so.e one been through a similar thing .my husband has renal faliure , he has Calciplhaxisis,  heart faliure he's 57 he had a triple heart bypasslast Jan 2015 we had our face to face assesment this Feb he was awarded high rate of motabilit and I get carers allowance as I do home haemodialysis 6 days a week because of calciphlaxis he is un able to walk far and his hear faliure limits him very much so .
Well yesterday the most amazing thing happened he got a transplant .
He's very sick and the kidney is not working at the moment and he still reviving dailysis and they are hoping the kidney will work but the man in the opposite bed said colin had to phone them to stop his benefits I'm terrified 
He has been told by his nephrolgy team is all this kidney will do is stop him having to use a machine apart from that his heart problem will still be there and so will his calciplhaxisis what am I to do please 



Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @spinbobbin welcome to the community, can you explain a little more about what questions you want help with?
    Scope
    Senior online community officer
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Hi spinbobbin

    I don't think his treatment will affect his benefit. DLA/PIP is paid according to how the medical condition(s) affect the person's ability to do certain daily tasks and walk outside, not according to diagnosis and treatment received.  If your husband's capabilities don't change, if he still can't walk far and needs care at home, then he's still entitled to the same benefits. His doctors have told you that his needs won't change - they know better than the man in the next bed who is mistaken, to put it no higher.
  • spinbobbinspinbobbin Member Posts: 14 Connected
    Oooo Matilda thankyou so much for getting back to me I'm at my husbands bedside he is desperately unwell tubes from every direction , I was just so frightened , I thought if they got paid in to my bank account  I would be breaking the law to take them but I needed some them today to get a taxi here . 
  • spinbobbinspinbobbin Member Posts: 14 Connected
    Sam-scope I think what I'm asking is do I have to inform them today about a kidney transplant he has had 
  • spinbobbinspinbobbin Member Posts: 14 Connected
    @Sam_Scope sorry new to me this I guess what I'm asking is do I have to tell the DWP about Colins transplant asap we don't even know if it will work yet . I'm just so worried about him right now he very unwell tubes from every direction I know a transplant is classed as a treatment not cure in the hospital but do the DWP think the same or do they think that's it he's better I know it sounds daft but I'm a worrier sorry thankyou for all your help 
  • spinbobbinspinbobbin Member Posts: 14 Connected
    @Sam_Scope do you think it would be worth asking on here if there is a knowledgeable person about benefits I'm terrified !
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    edited December 2016
    spin bobbin, ask in the 'Ask a Benefits Advisor' category.  But you don't have to tell the DWP about a change in treatment alone.  You are only supposed to inform DWP if there is a change in how the disability affects the person.  And, as you say, he's still recovering and you don't know yet whether the transplant is going to make any difference.
  • spinbobbinspinbobbin Member Posts: 14 Connected
    @Matilda I'm not very tecno minded and am struggling to find the page I will continue to try but thankyou so much for all your support you are so kind 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Under your profile name on the right hand side select 'New discussion'.  The 'Select category' box won't come up first time (for some reason!) so go back and select 'New Discussion' again.  This time the 'Select category' box should come up.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    edited December 2016
    Hi @spinbobbin It isnt surprising that you are stressed! 

    I think you have had some good info from @Matilda - definitely speak to doctors and specialists, other patients may mean well but often dont share the correct information.
    Scope
    Senior online community officer
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hello @spinbobbin,

    There are certain rules about stays in hospital and they can affect benefits. For example PIP stops after 28 days in hospital. When PIP stops so will the Carers Allowance. The following factsheet from Disability Rights UK explains how benefits are affected by hospital stays. This could be what the gentleman in the opposite bed to your husband was trying to tell you.

    How long has your husband been in hospital so far and how long are they expecting him to be there following his transplant? The day you enter and the day you leave hospital aren't counted as days in hospital. If you need any further help with this please let me know. 

    I wish your husband a speedy recovery and I hope that you're taking the opportunity when you can to have a break yourself. It's a very worrying time for you and you don't need the added worry of what happens to the benefits during this time. I'm on hand if you need anything and if I'm not on the community you can reach me at the helpline.

    All the very best
    Debbie


  • spinbobbinspinbobbin Member Posts: 14 Connected
    edited August 2017
    @Debbie_Scope thankyou so very much how kind of you to take the trouble to get back to me and your response was so reassuring thankyou so much 
    He went in on Friday no idea when he wI'll be home but not for a while he will be in over Christmas may I wish you @Debbie_Scope @Matilda @Sam_scope a very merry Christmas you have all really helped me through such a difficult time my 10 pound bonus this year will be donated to the site as thankyou to you all x
  • spinbobbinspinbobbin Member Posts: 14 Connected
    This has now ben done xx
  • Chris_ScopeChris_Scope Member Posts: 695 Pioneering
    That's very generous @spinbobbin, thank you for your support, and we're glad that you've found the community helpful. Merry Christmas!
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    I am so glad you got the support you needed @spinbobbin and glad the community could be there for you.  Surgery of a loved one is such a difficult time and the benefits system is really confusing too. 

    Sorry to hear your husband will be in hospital for it but wishing you a Merry Christmas.  Thank you so much for your kind donation to Scope, you are wonderful!
    Scope
    Senior online community officer
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hello @spinbobbin,

    Thank you so much for your kind words and your support. It's so lovely to see how everyone has rallied round, this is why I love the community so much! 

    If you ever need anything else please do let us know and let us know how your husband's recovery goes. There's a whole team of us at the helpline and we all specialise in different things so you can get advice about benefits, housing, social care, equipment, leisure and a whole lot more. Always happy to help.

    Wishing you and your husband a Happy Christmas and very best wishes for the New Year. x x

    *Group hug!* x x x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    I hope that your husband isn't in hospital for too long, @spinbobbin.  Wishing you and your husband a good Christmas and a happy New Year.
  • [Deleted User][Deleted User] Posts: 0 Pioneering
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  • spinbobbinspinbobbin Member Posts: 14 Connected
    @mumof3boys ooo I'm so sorry I do hope he feeling a bit better today . It's very frightening hearing heart faliure you want to wrap them in cotton wool you imagine they going to be seriously ill in seconds the thing is that they caught it and that's half the battle there will be some major life changes but he won't have to do all of them at once and it sounds like he has an amazing mum   hugs to you both happy christmad 
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    The user and all related content has been deleted.
  • spinbobbinspinbobbin Member Posts: 14 Connected
    Yes hun that's standard for the start of it they will change it when they got more infomation
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