Thursday, 21 April 2011


OK so how anyone works the benefit system is beyond me, All i receive is DLA higher rate and I have a motobility car. I have worked My ass off for 2 years running my business, I probably should have stopped work about 6months ago, but I was determined to pay my own way and I didn't want to claim benefits as A) its bloody difficult and every time iv gone to I find it hard to get a penny out of anyone B) because I liked that I was earning my own way, even if it was making me ill. But now i am desperate for money, I am well and truly beyond being able to work, but will anyone give me any money. NO.

I filled in forms for ESA over 3 weeks ago, this is the benefit that has replaced incapacity and is what I should be in a fair world entitled to. I am not, the reason, Stuart earns to much, now you may be thinking fair enough, if hes got enough money to support you both then why should we get money, well no. The wage hes on is rubbish and once hes driven to work everyday 17miles and 17miles back and paid parking £5 a day hes left with enough to pay our rent and bills but we can't afford food or money to actually do anything with. My nurse has been ringing round for a ridiculous amount of time, iv now asked my social worker if she can have a look into it for me. But I have to appeal this decision, until then I am broke. My nurse on the phone stated how do they expect a terminally ill person to go without any money and that I am far ill er than they could perhaps even comprehend, but I still have to go through the stress of appealing and going back and forth trying to get some money. Now I could get a crisis loan and believe me, were in crisis, but if we don't know if were going to receive anything, How do we pay it back?

We might also be entitled to, or should i say Stu might be entitled to tax credit, but they only think he will get £6.60, you have to ask if its worth it at the end of the day, but i will fill in the form just in case.

Another thing iv decided is to give up my car, to get the money. It pained me to do it, but I haven't driven in months and can't foresee me being able to do so until I get a transplant and then if i do i hopefully will be re able to claim the car as i do suffer with sever arthritis, which is the reason i originally got the car, not for my cf although that became just another reason to have it.

So there it is. the benefit system does not care if you are terminally ill, it does not care if you have no money to live, let alone enjoy what time you may have left. David Cameron decided to reform the benefit system, he decided to spit on people like me, who have worked there socks off for as long as they could, he was lucky that hard working tax payers payed him a handsome wage when his son was ill so he could provide for him the best he could, but for those of us who don't live in a well off house hold we will just have struggle and suffer, when we are most in need. I won't even start on what hes trying to do with the NHS.

I can feel my blood boiling just thinking about it.

Anyway on another note, 5 days of being bizzy and they left me a little worse for wear, I had trips out and about enjoying the sun, sunbathing, beach, 2trips to the hospital, which weren't so fun but needed never the less. Unfortunately I have lost 3kg, which puts me back at a low bmi possibly to low for transplant, but I'm hoping they would take into account how ill iv been and not call off a possible tx, my team have said they will contact them. When i saw the figure on the scales I felt the tears brimming, i try so hard to keep my weight up and haven't seen it that low in a while and if it doesn't go up buy next Wednesday then i will start some NG feeds to get it up. Iv now got a routine of 2week of an IV and I change IVs I'm on 2 at a time and one week ill change one the next week I change the other so that if I have any allergic reactions they will know what IV it is. I also got an oxy arm (a device that looks like a Britney mic, it defuses 02 in front of your face) from the hospital for sunbathing, so I don't get tan marks (yes I have my priority's) and also when i need a change because the nasal specs get sore then i can.

All in all i am a mix of emotions, I'm enjoying life and my life is 100X easier now I have the care, there trained in physio now, so again life is easier and my chest is being cleared properly. I have energy for other things, not alot of energy but so much more than I did, as most day getting out of bed is to much, but with the help that's made into an easy job. I am so happy in all, but this benefits thing has been like being smacked around the face with a brick. I know it will get sorted, well I hope and pray it will. But its just so much stress and tear I didn't want to be parting with. Oh and an update on Maud (wheelchair) my brother has her at the moment and is pimping her, I will post pictures when shes done.


  1. Hi Kirstie,

    I've been following your blog for a while now and it's been said before and you no doubt hear it all the time, but you are an absolute inspiration. Your story really hit me hard. Thanks to you though, the organ donor register has two more names on it (mine and a friend who I persuaded to join).

    It sounds very cliche but I really wish there was something I could do to help. Well maybe there is - about your money situation. What about setting up a donation site? I'm sure loads of people on here would be happy to help support you in any way possible. Just an idea?

  2. The benefits system is awful, it's an absolute disgrace that you're having such a hard time getting money to live on when you genuinely need/deserve it!! :(
    I'm glad to read that your finding life easier with the care package set up :)
    Dawn xx

  3. There are two places that can be a wonderful help with benefits when you are ill. The first is citizens advice bureau. They usually have someone who specializes in benefits in each area. They tend to know exactly what is available and some of the stuff will be things that you have never heard of before. They also know exactly how to word the forms and what is needed in each section, so it takes a huge chunk of the stress out of it. I can not talk on phones and hated having to ringing differnt places all of the time. My advisor was truly the most helpful person ever, and got everything sorted for me.

    The other place, which might come in handy is welfare rights. These can help with thing things like appeals against benefits, but also know a lot of services that are local, that you might not know about including local grants to help meet any needs you may have.

    It just adds tons more stress when you are scrapping for every penny when you dont feel right. I hope that things improve for you.

  4. Kirstie,

    My partner and I are thinking of moving in together. At the moment I live alone and recieve support from the government, but as soon as we move in together that all goes. I have worked out we'll be £10000 down a year, yes ten thousand! I have also worked out we don't get tax credits of any kind. If I was a child and dependant on her we would get extra support, but because i'm disabled we won't. Also, if I was working as the disabled person and supporting her we'd get support, but because she's supporting me we don't get support. So its not as if she has an amazing wage, different circunstances would warrant support, just apparantly not these circumstances. Point is, and this will be the same for you, you and your partner will be better off living apart. The system is set up to put disabled people in isolation (or you could say support single disabled people), but it defintaely works against disabled people that want to be in a couple or cohabit and need support, but can't work. Finacially, as you may have noticed it almost encourages the partner to give up work and become a carer, thus taking them out of contributing to society and adding even more cost to the benefit system. There should be support to allow the well individual to remain in work, pay taxes, but allow for greater support for the disabled person and not penalise the couple for living together. It's pretty disgusting.

  5. It's definitely worth claiming the tax credit and then if things change and Stu's income goes down the claim is already in place.

    Also, I think in a previous entry you said one of your rooms had been set up as a treatment room? Notify the council of that and you should qualify for a disabled person's discount on council tax.

    Have you looked at housing and council tax benefit?

    Glad you've been getting out and enjoying yourself. As a wheelchair user myself I can't wait to see pimped pics of your chair... mine could do with some pimping although it did get some TLC today.

    Thinking of you

  6. Hiya

    Ive been reading your blog for while, since you were featured on Russel Howards good news, and first let me say you are very brave woman. I've wanted to comment before but i'm kinda shy lol.

    I felt I had to this time because I understand the problems your having and am in the same boat. I have servere M.E and have been unable to work the past 6 years, even though I would give practically anything to be able to again. I too am on higher rate mobility DLA and middle rate care, and that to is all I can get. Can't get ESA because my other half works too many hours, although his wage is pathetic. We now have a 3 month old daughter as well (a complete surprise when we thought it wasnt possible) she is the light of my life, but obviously babies are expensive and ATM everyday is finanically a struggle.

    We would be better off if Chris left his job but our morals don't allow us to go down this route. Although if we did, I would get ESA, our rent would be paid for us, he would get careers allowence and income support. It's stupid! I can completely understand why people don't bother to work when they are in similar situations, where's the incentive.

    Anyway just wanted you to know that you are no alone and that the system as it is is stupid! Stay strong hunni, we're all rooting for you!

    Jen, Chris and baby Niamh

  7. Kirstie - hiya, just an occasional reader [apols n will try to keep up better] but had to comment re the benefits... If you are on higher rate mobility and give up the motobility car, then your partner will be able to tax his car as an exempt car... also you don't say if you are on high rate care allowance for DLA, but you should qualify for this no problem... I agree with the post above that the CAB are amazing at filling out claim forms, as yes they know exactly how to word things. Also your social worker will be able to provide additional back up supporting information... So do look into this...
    Good luck and hope things get sorted soon xoxo

  8. Kirstie I am appalled by the situation you find yourself in!!! I am on Incapacity Benefit and this wasn't taken off my when my husband was working so I can't fathom out why you (and Jibbins) are being denied ESA because of your partner's incomes? I have to admit to not knowing anything about ESA until I read your post but have now read a bit more about it. I can't understand why you don't qualify under the contributions based system, as you would have paid the necessary 6 months of National Insurance payments when running your own business prior to having to give up work?

    The benefits system has always been illogical and looks like its going to continue to be. Although I did read that ESA came in during the last government's term in office in October 2008 so I don't think in this case it is necessarily the fault of Mr Cameron (not that this helps you obviously!) Any system that penalises people for living together or being married is nuts, as is a system where you are better off on beneftis than working if you are perfectly healthy, as so many people now find.

    Have you got a CF social worker at your hospital? He/she should be working on this for you - last thing you should be having to do is battle a system when you are battling CF as well. Also I agree with the other poster who said that places like the Citizens Advice Bureau and Benefits Helpline can be worth contacting (perhaps by a relative so you don't have to struggle with it)? Finally would you ever consider contacting your MP about it? Amazing what can be done when an MP steps in and after all, that's what they pay them for!

    If all else fails, perhaps you should consider going to the media about this? If it is a case of the benefit system being out of line (rather than the twerp dealing with your application messing it up) I think you could gain attention to the unfairness of it all by getting it splashes across a newspaper. Just think how much a national paper would enjoy broadcasting a story about a terminally ill young person denied the means to live because of the benefits system?

    Thinking of you xxxxxxxxxxxxx

  9. Thank you everyone who has replied, I will be putting all your advice together and appeal this. Also once i give up my car, it will be 9weeks before i start to recieve the payments, which they will be back dated but god 9weeks is a long time. fingers crossed for me guys xxx

  10. Try this site.Many use it and it helps tremendously.Goodluck

  11. well that is just nonsense. and not fair in the least. I cant really say much else as I'm in the US. and we are pretty much handed disability benefits. and if they're turned down we have wonderful agencies like Binder&Binder who will solve everything. but yea. thats crap. hopefully your doctors/nurses will be able to get them to work something out that suits you better.

  12. i have been wondering what it's like in other countries as far as benefits for Cystic patients and it sounds like not too much different than here in the United States (at least in the two states i've had to deal with it in my adult life). it most definitely is a pathetic system here, where the lazy, drug-addicted, baby-popping people get more than the chronically ill like us should be getting!