Heart failure and struggling to make ends meet — Scope | Disability forum
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Heart failure and struggling to make ends meet

System Posts: 702

Scope community team

This discussion was created from comments split from: Change in circumstances.


  • Nebby
    Nebby Member Posts: 1 Listener
    My. Nightmare.... 
    I have always been a working single mum juggling work and my two daughters. I private rented our home and paying wasn't a big stress I was doing OK, until I was ill with a bug I never picked up from, I was slowly getting worse and worse until one night I had to go to ae after tests ecg etc I was told I had severe heart failure. Left and right chambers of my heart 15% to be exact I was 36yrs old came as bit of a shock. When I was sent home after weeks in hospital I was left with no help advise on anything my condition help with my home or kids. I tried to apply for benefits etc but got no where. The pip decision was 1 point short I didn't appeal and suffered ever since. I lost. My driving licence I couldn't afford my rent and was on councils waiting list for 4 yes. I had to sell most of my possessions and sell things online J St to pay my rent. I eventually lost my kids their home. I was homeless sent from hotel to hotel to temp hours. Over an hour away from my school. I was eventually moved to my new house. I've got a constant doc now but still struggling to pay bills. I have nt a bus pass I get no home help and every organisation I went to for help did nothing, this government has let me and my girls suffer the stress, anxiety worry they have caused. Me could have killed me off. I am so tired of fighting them for help I've no fight left 
  • cracker
    cracker Member Posts: 324 Pioneering
    @Nebby,,What has happened to you should never happen to anyone. With a severe illness like that doesn't quality you for immediate help?

    I. too, had a period of being homeless and not being able to afford even a slum hotel. This was in New York City. I didn't have the responsibility you have for children.

    Do you have (or can you find) an advocate to help you get the aid you need? The first thing that comes to mind is a church or charity organization. Can you appeal to your Parliament representative? 

    I am so sorry you are going through this. THht you have not gotten home help or even a bus pass is outrageous. And is there a friend who can stand with you in this fight?

    Sending you hope this evening.
  • poppy123456
    poppy123456 Member Posts: 28,392 Disability Gamechanger

    Are you a single parent or do you live with a partner that works? Were/are you claiming any benefits at all or are you working?
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Nebby, and a warm welcome to the community!

    Thank you for sharing this with us, and I'm so sorry to hear about all that you've been through. It's clear that things are tough at the moment and I really hope we can help.

    Do let @poppy123456 know the answers to her questions: she and our other members are really knowledgeable about benefits and may be able to advise on anything you could claim. It may also be worth visiting your local Citizens Advice to see if there's any extra support they could offer.

    Are you still registered with a GP at the moment, and are they aware of your current situation?
  • yanni
    yanni Member Posts: 53 Courageous


    I am sorry to hear what you have been through. I was around your age when I collapsed without warning and ended up being diagnosed with’ mild ‘heart failure and that is bad enough to live with – you have clearly had a terrible time with this. Like you I was just discharged with tablets and left to get on with it. There seems to be a total lack of support for heart failure patients.

    I just wanted to mentioned I am surprised that you are not entitled to a disabled bus pass as most English county councils seem to give one on the basis that you have or would be refused a driving licence due to physical fitness and you say you have lost your driving licence.

    The council doesn’t always make this very clear and it is easy to assume that as you can physically walk you don’t meet the criteria – it may be worth checking with your county council again?

  • justg72
    justg72 Member Posts: 173 Pioneering
    Hi Nebby
    So sorry to hear about your health and no award for PIP.
    How are you now? are you still the same with your health disability?
    Like others have said you can contact CAB for advice and you could also get a local MP involved. You could google the area you live in and find out who your local MP is, they can sometimes help. I got my local MP involved because of losing my PIP and he has been great. I am now waiting for my tribunal date. Have you thought of re-applying for PIP?
    I live in West Yorkshire and I found that in my area theres usually benefit advisors attached to community centres and doctors surgery's. I would google your area and benefits help and see what it comes up with. Some will complete the forms for you so you do not have the stress of that and deal with all the correspondence.
    What does your GP or heart specialist think about been awarded not enough points for PIP?
    Have you got any support from family and friends who can help you?
    I hope you get the support you really need and good luck. Take care.
  • topshoes
    topshoes Member Posts: 442 Pioneering
    edited November 2018
    Hi @nebby sorry to hear this, have they named what you have got at all  , i have got hypertrophic cardiomyopathy , i have also been told they can not do any thing for me ,  i take each day as it comes , may i ask which hospital you was in and was it a heart hospital .i am under st georges hospital london with a professor and hes crewe , if you let me know i will do my best for you to get to the right place ,, i also know how hard it is for you, you are only young. x 


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