Who cares?

Living alone, you have to do everything yourself.  And I mean everything.  From making a cup of tea to mending a broken boiler, from shopping to decorating, from fixing flat tyres to putting the bins out…….it’s down to you.

I’m often asked why I don’t have help in the home and this is the answer: I can’t afford it.

In the UK, if you are unable to work due to illness you are entitled to claim welfare benefits provided you have paid enough National Insurance stamp (or tax to you and me) when you were working.

ESA

Our sickness benefit is called Employment & Support Allowance and for a single person amounts to £106 ($161) per week.  Considering my grocery bill at Tesco is £60 ($91) per week and my gas/electric bill takes up £30 ($45) a week, it doesn’t go far.  It doesn’t cover mortgage, insurances, clothing, telephone, TV licence, water rates…………nor bugger all else.  It’s basically a token sum which no human being could possibly live off.

It’s also increasing difficult to get.  Despite being ill since 1994 and having strong medical support from both my GP and consultants, my last application was turned down and I was told I was “capable of some work”.  It took an 8 month fight, including the support of my local MP, to get the decision overturned.

PIP

If you are also disabled by your illness, you can claim a further benefit called a Personal Independence Payment.  This comes in 2 parts: a mobility component to pay for help with getting around and a care component to pay for help in the home.

Mobility component:

For me the mobility component comes to £220 ($334) per month which sounds like a lot, but I need an automatic car which on average costs over £12,000 ($19,500) to buy.  I don’t have any savings, so I either need to use the Motability Scheme or have a car loan (which in monetary values equates to the same thing).  A five year £12,000 loan has monthly repayments of £237 ($360), so goodbye mobility component of my benefit with nothing left over to insure or maintain my car, or put the £80 ($121) of petrol in a month which I need just to drive to town and back to see my parents, let alone go further afield eg. to the hospital for my physio.

The mobility component of PIP is also supposed to be used to buy mobility vehicles.  If you need a wheelchair these are provided free by the State.  If, however, like me you need an electric mobility scooter you have to buy your own, which costs anything from £500 for a small scooter to tootle round the shops with, to £5000 for a road worthy vehicle (which I need, as there are no pavements where I live so I have to have a Class 3 road vehicle just to ride up my village).  As you know, my parents had to buy my recent 3rd hand road scooter as I simply didn’t have the cash.

Care component:

The care allowance is £54 ($82) a week, which you are supposed to use to pay for care in the home.

Social Services offer home care services, but ONLY for meal preparation and bathing.  They will not get your shopping, clean your home, do your laundry, change your bedsheets or anything else.  It’s almost impossible to qualify for Social Services home care unless you are a bedridden cabbage, and even when I was a bedridden cabbage my care was a mere 30 minutes a day.  WTF are you supposed to do with that?!

So you end up employing a private care agency to get the care you actually need.  They charge £16.50 an hour, so out of £54 you can only afford 3 hours care per week.  That’s not even half an hour a day, and many of my main meals take an hour to prepare and cook.

Disability benefits are also increasingly hard to come by.  My first application, despite being in hospital for respite care at the time as I was too ill to continue living alone, was turned down.  It took 14 months, and having to employ a welfare rights solicitor, to get the decision overturned (and the solicitor took all the back-pay in fees).  Over the next 8 years every single renewal application (which happened every 2 years) was also turned down and had to go to Tribunal before the decision was overturned.

Claiming benefits is not for the faint of heart and affording care in the home is, for many, a longed-for but distant dream.  My health suffers immeasurably due to the fact that I have to push myself to do physical tasks I know I’m not really capable of, but I simply can’t sleep in a dirty bed and like everyone else I have to eat.  If I can’t afford to employ help it’s down to me, sick or not, in pain or not, exhausted or not………… there is no other option but to crack on and care for myself.

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10 thoughts on “Who cares?

  1. Elizabeth Milo

    I’m curious, do you get disability payments on top of the ESA and PIP or are they it? I currently get about 1/4 of what we spend and I’m going through all my money from years of working and saving at lightning speed. We really need to leave this house and mortgage, but we’ll never be able to be home owners again, so it’s hard. I checked with home care for the first time and it’s the same- they won’t do anything I really need like laundry or cleaning. I’d give anything for an automatic car and another scooter. You can only get a wheelchair if you need it around the house.

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    1. bertieandme Post author

      No, PIP *is* the disability payment. ESA is the illness payment. That’s your lot I’m afraid.

      It’s a stupid system though and there are extra benefits available for those who qualify – I don’t qualify needless to say.

      If you’re a home owner on a low income you get nothing towards your mortgage. If you are in rented accommodation on a low income you get help with rent. WTF is that about?!

      If you’re in rented accomodation and in receipt of housing benefit you can get help with Council Tax, Water Rates etc. But if you own your own home you can’t.

      So cos I own my home I get jack shit in terms of other benefits. I know my home is an asset, but only if I fucking sell it and then I’d be homeless!!! I can’t get my hands on the capital while I’m living in it.

      Whole system sucks xx

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      1. Elizabeth Milo

        Oh, that’s awful. I think it’s the same here. I called about getting help with our mortgage and we don’t make ENOUGH to get our mortgage reduced. The bank wants to see that you make ENOUGH to pay something, but we actually make so little, they won’t help us. It’s because we live off our savings so far. Our option is foreclosure because we are underwater in our mortgage. It seemed we were the last people in the country to buy our house (in a bidding war, so we agreed to a higher cost than we should have) before the housing bubble collapsed. Practically overnight, our house went from being worth $360K to being worth $250K. And we owe more on our mortgages than we could sell it for. Such a trap!

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        1. bertieandme Post author

          I feel your frustration EM. I bought my first house back in 1989 and 18 months later the market crashed and interest rates doubled virtually overnight. I was stuck in negative equity for several years and, as I couldn’t afford the huge rise in payments due to massive increases in interest rates (15% at one stage!!) but couldn’t sell up due to the negative equity, I was forced to take in lodgers to make my mortgage payments which I hated. Wish there was an easy answer 😦 xx

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    2. Blessed

      I just want you to know how much I appreciate your authenticity and honest expression of all that you go through. It has been many months since I last responded to you but your blog is my lifeline on the days that I feel like the only person in the world that goes through the symptoms that I do. I feel helpless as I hear my adult daughter going through the same things, especially after another doctor visit where she is told that there is no such thing as this “ME or Mast Cell” and that they are just FAD diseases!! I only want you to know that you ARE making a huge difference for good in many people’s lives. The best part is that you are able to vent and process the “bugger stuff”, which as we all know must have some outlet. You aren’t isolating or “pretending” or fearing that others may have differing or negative opinions and that takes a Hell of a strong woman! Thank you and keep the post coming!!

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      1. bertieandme Post author

        Hi Blessed

        Many apologies – for some reason I missed your comment so have only just seen it.

        I’m so sorry to hear your daughter is in a similar position. Attitudes really do vary depending on where in the country you live – some areas are great, others suck and it sounds like your daughter lives in a sucky area (as I do). Fortunately I have a great GP and physio, but apart from that my health care is non existent.

        I truly appreciate your comments on my strength, especially at the moment when I feel so low and feel I have no strength left. I sometimes find the comments left on my blog are so lacking in empathy and understanding, so to read such a lovely comment as yours makes all the negative stuff worth putting up with.

        Hugs
        Jak x

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  2. Lindsay

    i think it’s ridiculous how little the government expects people with disabilities to live on. not that i would wish anyone sick, but i do wish everyone had to try to live on disability for a year to see how difficult it is.

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  3. Olivia

    please use this website for helping you fill in esa and pip forms: benefits and work (just google it) it is run by soliciters, you pay a small yearly subscription for guides that help you fill in the forms in the best way to show how your disability TRUELY affects you. They are amazing. As for social services, the new care act 2015, that comes into force in April means that the local council has to assess you if you request it and not just if you are in crises. If you ask for their critical need criteria, they have to show you all the areas in which you can qualify for support. Before this care act, all local authorities had different levels of when they intervened, but from April there will have to be a level playing field in criteria for access to support, all over the country. Also with the advent of personalisation and direct payments, the care act is forcing councils to provide care services in the way in which you choose and not just by traditional services. It is the law that they have to provide you with information about direct payments and personal budgets and create a wide range of care services for people to choose from. In addition if you have more needs that are created by health conditions, rather than social needs, you can ask for a continuing health care assessment, which is where the NHS has to assess if they will provide and pay for your home care services. If you can display that providing a specific diet is paramount to your health, or that by someone coming in to do a bit of domestic task, means that you can do your own personal care you are entitled to get help with care services. I know because I have done this. It may sound daft, but if you can do your personal care, but it puts you flat on your back for 2hrs, or causes you to start being breathless and passing out, even if you struggle on you are in effect causing yourself more harm and should be classed as not being able to do this task as a healthy human being could normally do. I have found that getting care in is no easy task with complex and rare illnesses like EDS and PoTs and CCI, and your life is still very hard but im currently writting my own care plan and making it very personal indeed using a personal budget. We have had to change 3 social workers to get to this stage but it is definately worth it because I can use my very little energy on nice things or more important things that they cant do. I hope this helps you a bit. I know its very tough. I think we all keep fighting in our own ways – what else can you do?!! PS Jak, I hope you feel better for your rest, sending you all my love, keep going girl, your spirit is strong xxxxxxxxx

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    1. bertieandme Post author

      Thanks for all the info Olivia, I really appreciate you taking the time and energy. I actually worked in administrating Social Services home care for my job when I first got sick and my Mum was a Home Care worker before she retired – how ironic is that?! I gave up on Social Services as the hassle of getting assessed and the care I actually need (as against what I was offered) plus all the financial stuff made me ill 😦 It may be that things get so bad I’ll need to tackle it again, but I’d have to be desperate to put myself through the process.

      I did use the Benefits & Work forms to fill out my ESA forms and still got assessed as being “fit for some work”. My friend, also with ME, and I filled our forms out together which were almost identical. She was placed straight in the support group and I was placed in the WRAG. Just goes to show it often depends who reads your form at the DWP as to whether or not you get the benefit :-/ It’s totally arbitrary, or so I’ve found over the last 2 decades of dealing with them.

      Good luck with your care and good on you for battling for it – it shouldn’t be that difficult though should it, especially when you’re so poorly.

      Hugs
      Jak x

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