Yesterday I received this text message.
So being the good girl that I am, I followed the instructions and rang the number. Naively I thought that maybe they had got another appointment for me that was closer to home and not at such a stupid time. How wrong could I be??
They cancelled the appointment!!
I know! I could hardly believe it either! I had to ask the guy on the phone to repeat himself as I thought I had heard wrong. Apparently there has been some sick calls at the centre I was due to attend and so they've had to cancel a load of appointments. Now don't get me wrong, I'm not unreasonable and I understand more than most that people get ill but surely they should have a contingency plan? Do they not have other members of staff that could cover or bring in staff from another centre? Apparently not.
So I asked when my appointment would be rescheduled to. And here comes the best bit.
They couldn't say!
So not only have they cancelled the appointment but they don't have another appointment to give me. So I could be waiting another month or even 2 for the next available appointment. Aaaarrrgggghhhh!!!!!!!!!
I tried to point out that I had been waiting for my PIP application to be assessed for over 6 months but to be honest I don't think he really cared. I explained that until I had this assessment I would not be able to receive any payments, to which I was told that this is just a top up benefit and that I should make sure I was claiming other benefits. Great. Thanks for that.
I'm currently claiming ESA (employment and support allowance) but to be honest the money I receive from this only just covers the basics. I dread hearing the words "Mum, my shoes are starting to feel too small; I think my feet have grown" as that means I've got to find enough money to replace not only school shoes but trainers, football boots and astro trainers too. And it's usually Sod's law that feet always grow at the end of the month when there's not much left in the pot!
I'm hoping to be awarded a PIP (personal independence payment- it used to be called disability living allowance) and use the money to get a cleaner and ironing lady (and to be able to cope with growing feet and school trips and dinner money and all the other things that kids need money for!) The ironing and the cleaning are the jobs that I find really hard to keep on top with in the house but at the moment there's just no spare money to pay for such jobs to be outsourced. Some people might think that tax payers money shouldn't be spent on things like these as most ordinary, working families can't afford them. And usually I would agree. I think that there needs to be a line drawn between benefits that people receive because they can't work rather than those who simply won't work. I, like thousands of other inflammatory bowel disease patients have had to give up work because I am now too unwell to continue working. But I did try.
I worked for 3 of the 5 years I had a Stoma (the first two I was simply too poorly to work but as soon as I was well enough I found myself a job). I worked on days that I should have stayed in bed. I used to go to work after spending the night in A&E with a Stoma blockage. A few times I was discharged at 6am and I went home got changed into my suit and went straight to work. I worked on days I was in pain. And I'm not just talking about a twinge, I'm talking agony. I would often be so drugged up I could barely make out the words on my PC screen and would keep hot water bottles in my desk drawers. But I'm not saying this do you feel sorry for me or think that I'm some kind of superwoman. Loads of people with IBD (and other illnesses) push their bodies to the limit trying to maintain a 'normal' lifestyle.
Looking back now I wish I had listened to my body earlier and rested when I was really not well; perhaps I might not have gotten so ill if I had. Who knows? All I do know is that it was just a job and all the late nights and working extra hours counted for nothing in the end. So many people are so loyal to their jobs and their workplaces but very, very rarely is that loyalty reciprocated. When the push comes to shove you're just another number on the payroll and easily replaceable. I now tell people that there's no point in working yourself into an early grave because your boss or your employer won't be stood crying at the side of it. They will already have moved onto the next project and you will be quickly forgotten.
Anyway, I've gone off at a tangent which is so unlike me 😉. Going back to benefits...
I think that if you're claiming benefits and you are fit and healthy and able to work then you should get enough to live on but not to live extravagantly. There shouldn't be enough money to maintain a 20-a-day cigarette habit, or pay for fancy cars, electronic gadgets or nights in the pub. But sadly this seems to be the case. There seems to be generations of families that don't work and don't see why they should. There are young people who have never worked a day in their life and think that they're entitled to receive something for nothing. There are young parents that can earn the equivalent or £20-30,000 on benefits and wouldn't have that earning potential in the real world and so are propped up by tax payers. There should never, ever be a case where you are better off on benefits than you would be in work. I believe that benefits should be a safety net to catch those at the lowest points in their life- it should not be a lifestyle choice.
Which is why I feel guilty saying that I would use benefit money to have a cleaner after spouting off like I have just done. But the truth is that something like a cleaver could make a massive difference to my life. Hubby works 60+ hours a week in a very difficult and demanding job. Not only does he have to do that but he also has to run the house most of the time. He comes home from work and does the cleaning, the laundry, the ironing, the hoovering and all the other jobs it takes to keep the house from turning into a pig sty (unless of course the kids are doing them to earn buttons!) And I feel so guilty because I wish I could do it during the day when he's at work and the kids are at school but I just can't. This week I went food shopping in morrisons with Bestie and it wore me out so much that I fell asleep in the car as Big Fella played in the park after school. Luckily there were other mums who kept an eye on him and who then drove me and the kids home because I was so exhausted that I could barely keep my eyes open.
So to prevent this happening every day I tend to rest during the day so I've got enough energy to pick the kids up from school and look after them until Hubby gets home. And as soon as he does some days I will crawl into bed and sleep for hours or until the morning. So I would love to be awarded enough of a PIP to pay someone to do all those chores so that Hubby can come home from work and just relax. It would be nice to feel as though we were able to live rather than just survive.
So going back to the PIP assessment...I've no idea when I will be assessed. I did ask if I could have an assessment in Nottingham because I has been told previously that the south east had a massive backlog to get through. But apparantly the Nottingham centre is dealt with by another group so it wouldn't be straightforward just to simply get me an appointment there. They would have to change my address on the system, pass me over to this different group and then I would be at the bottom of the list again. So I'm just going to have to wait until the letter drops onto the mat to find out when my Assesment will now be. Hopefully it will be closer to home and at a better time. But I'm not holding my breath!
NB x
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