AIBU in feeling so fed up of it all?(80 Posts)
I'm in my early 30s and have various health conditions. I'm classed as disabled, blue badge etc but have been working in a professional role up until a few months ago.
I've had to stop working because my disability has got much worse and I'm housebound 99% of the time, bedbound about 75% of the time.
We are really, severely struggling. My husband works a full time job but is on little more than minimum wage so gets about £300 a week. We've applied for housing benefits and been told we can't get more than £1 a week because of DHs income. I am not entitled to ESA because DH works over 16 hours and I took a year out from working to do a post graduate degree. I can't claim Jobseekers because I am unfit to work. We aren't entitled to tax credits as DHs income is too high (ha). I've applied for Pip and been turned down because the assessor told some extremely ludicrous lies and even though he saw me sobbing in my bed, I was deemed able to live normally.
Our outgoings are so much more than £300 a week and £20 child benefit. We have a DS in school and I honestly don't know how we are going to feed and clothe him, let alone us. We have no savings, we are in council accommodation (10 years ago I was made homeless by ex DH) and we both have debts.
I've seen citizens advice who have confirmed that because DH works 37 hours at just over minimum wage, we can't get any help.
I can no longer walk and NHS funding won't stretch to a wheelchair. I have to buy one and because my condition effects my arms, it has to be electric.
You hear about things like this happening to people but never really think it will happen to you. We've both worked all out working lives, we are nice people, we live to be kind to others. How can this have happened to me?
I feel so useless. I'm in constant pain, I can't move and the stress is making me literally want to die. How can some people seem to get so much help and yet others are left with nothing? I don't understand.
Is there anything at all we can do? I don't know how to go on. I'm disabled and sick and a waste of space in the governments eyes yet 6 months ago I was working for them. Life's a proper bitch.
Oh bloody hell OP I couldn't read and run. What an absolute bloody nightmare. I hate that this country now seems not to care about nor want to help people like you. I'm not sure what advice I have to offer but you have my sympathy totally <feels useless>
Thank you for reading. I just feel particularly hopeless today after being turned down for Pip. I can't wash any more as I can't get in my bath and the shower is over it. I can't dress myself or make my own meals. I'm not entitled to any help. Social services have come out and said that there's nothing really they can do apart from put a rail on the stairs (I can't use the stairs anyway so absolutely pointless). I'm trapped in one room and I want out.
Oh Hun, I'm so sorry to read you're post Have you appealed the decision they made?
How old is you're Ds?
The only advice I can give is the children's centre I volunteer at has a monthly budgeting session, not to be condescending to you, but they also try to find out charity's and other schemes that can help people when in difficulty.
Are cab able to help with any benefits you might be entitled to?
I'm sending you massive hugs what a shit situation the government has left you in.
Yes, I can appeal Pip - I have to now do something called a mandatory reconsideration and if that gets turned down which apparently is very common, it will have to go to a tribunal. This will all take months
With the housing are you able to do a house swap? Hopefully get a ground floor flat so it's all on one level?
I know bungalows are hard to come by.
How can they just leave you are you able to write to you're local Mp for help or failing that go to the papers you should not be left in this situation.
Someone on here said that the Dr can give food vouchers for food banks? that might help a little.
if you have been assessed incorrectly can you appeal and get reassessed?
sorry, I didn't want to read and run.
Thanks I've looked into charities with the help of my GP but the only ones locally are the Red Cross who can only supply a wheelchair that someone has to push for 6 weeks only. I'm in rural Wales so not much around and no bungalows are available - apparently there's a huge waiting list.
I wrote to my MP about a month ago. I had an auto response saying I'd receive an answer within 14 days but nothing. I've even tweeted them but had no response. Perhaps they can see how hopeless the situation is so hasn't bothered to reply
Oh OP I'm so sorry. It sounds awful. I don't understand why you aren't entitled on such a low income. I'd really recommend going to CAB.
Is there one small thing you could do this evening to make yourself feel better?
I've been to CAB They advised me to appeal against Pip and the information I've been given regarding benefits is correct. She suggested that DH stop working - how ridiculous is it that if he did, we'd be better off? DH is vehemently against not working and will not even hear it mentioned. I don't blame him to be honest - being stuck at home all day really isn't any fun. It does make you think though, how the government wants people out at work, but makes it bloody impossible for some.
Hi sorry to hear you are having such an awful time OP. How old are your DC? Are school aware can they offer any help? Is there a national charity associated with your disability that could support you to challenge the Pip decision?
I've spent hours on the phone to HMRC arguing the same. He is very slightly over the cutoff of £18,000 and something a year - they sent me another letter just this morning, breaking down what we should get, then fully deducting everything due to DH's income. We don't even get the childcare element for DS having to go to an after school club because I can't collect him and DH doesn't finish work til 5:30
DS is 8 - I haven't mentioned it to school, not sure what they could do. They know I've applied for free school meals but the lady from the council called last week to say that because DH works over 16 hours, we can't have those either.
I think there is a charity, yes. I'm not sure what help they can offer but I'll look into it now, thanks!
Sounds like your other half will need to go part time to provide childcare and be your carer if you cannot even wash now. Then you'd also qualify for all sorts and both have a better way of life surely?
He doesn't have the option to go part time in his current job. He is being very, very stubborn about it and won't even listen to me with regards to the help we'd get if he worked part time. I can see where he's coming from because he shouldn't have to give up everything to look after me. He absolutely loves his job and he has no social life whatsoever since I became ill, so it's the only time he gets away from the house. I'd love him to go part time for all our sakes but he won't hear of it.
Appeal the pip, email/ call your mp, call social services again, and emphasise you can't bath or shower- see if you can get bumped up the housing list.
Don't let him give up work, it will be better for him in the long run.
Seriously consider separating- would it get you housed? Get a carer paid for? Dh and ds could come after school/ work every evening and all weekends.
Local authority housing will have staff specifically to do health-related housing need assessments, they need to do this to enable you to access a higher band and specific need for a ground floor property.
OP do you have an Independent Living Centre near you? They provide advice and help with disability benefits, housing, equipment and disability aids and getting help from social services. Scope U.K. might be worth a ring if you don't have an IL centre near you, they provide the same sort of service
Unfortunately most people are automatically turned down for PIP on the basis that "the chancers will give up, and if some genuine people are too tired to appeal then I guess that still saves us the money".
You need to appeal, and if that fails to then go for the Tribunal. Often at that point or a scant few days before, the documentation theyve had for months will actually be read and suddenly youre miraculously visible again.
Its a horrible strain and grossly unfair BUT it will open doors you need to have open once you are assessed as actually qualifying.
My god this is crazy!! Surely the system is set up to help people exactly in your situation OP 😲
Thank you everyone. We are housed but it's not suitable any more because of the stairs. Occ Health came out to assess and said I'd just have to stay upstairs. I don't think I'm even on the list for a bungalow. She said they could put a grab rail in the bath but I can't get in the bath so...
I can't separate from DH! I wouldn't want to anyway and DS would be devastated. I can't look after myself, need help to dress etc so could never live alone! Besides, he has nowhere to go. He has literally no family at all.
If you are in the support group of ESA and sounds like you should be, you can get regardless of household income. It's only income based for work related group for a year or 2 can't remember exactly.
I would apply again for PIP too, ask for a wheelchair assement from NHS too. They may provide a Manuel one if you need it. My NHS will give you a electric one if you can't push Manuel indoors too.
With the ESA, they said I didn't qualify for income based because of DH's wage and I couldn't get contribution based because I've only worked for a year as I took the year before out for postgraduate education, so I haven't made enough NI contributions.
I've been waiting a year for a wheelchair assessment after being diagnosed in 2013 and finally referred. My GP said it would be manual though which isn't any good to me unless DH is with me!
I feel like every, single door has been well and truly slammed in my face. It's heartbreaking.
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