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Crohn's Disease Forum

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Nov 8, 2016
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Hi ive just been awarded £55 per week for having qualified for crohns disease through Personal independant payment, its been suggested that i appeal for a higher rate due to my condition which at this time is not great, ie attending hospital every week giving blood, being sick due to medication and not to mention the fatigue and stress this condition causes me, would just like other opinions before i decide as what to do, as ive also been told appealing could also result in losing my initial claim,any suggestions would be appreciated.


Yours

Graham
 
Hello, welcome to the forum

From what I've heard that is a reasonable amount. PIP is supposed to be for adjustments needed such as hand rails or wheelchair adaptations, or to pay someone as a career to look after you. It's not supposed to be a wage or a sole income, if you are unable to work then you need to apply for ESA which is the sickness equivalent of Jobseekers. As long as you can prove that your condition stops you being able to work and is long term you shouldn't have too many problems getting approved. I personally am in the support group and have the highest award available for someone under 25 and while the process can be stressful it's worth doing if you are finding working impossible.
 
Thanks valleysangel92.

I still manage to work full time, could never stay at home all the time, would drive me nuts, but im on all sorts of drugs just now, sometimes its an effort just getting up in the morning, the worst of it all is the fatigue. always tired, but the nurse says through time it will get better, just need to give the medication time to work, up to a year ? Azathriopene, pentasa to mention a few, thanks again.
 
In that case I would say that what you are getting is probably fair, if my memory is correct its not too far off the maximum weekly amount anyway. For some of us it just becomes impossible to work, personally I have a variety of conditions and have been advised its just not good for me to try to work until things stabilise. If you do find that working is simply too much, but you don't feel its bad enough to stop, you could ask your GP for a sick note just for a few weeks if you needed.

It does take time to get used to the meds, and it will take time to get used to the side effects and to find the right treatment plan for you. I've been diagnosed for 4 years and we're still trying to work out my best combination. If you're finding you are struggling with the Aza side effects, try taking it in the evening, that way you'll sleep through the worst. Your IBD team or GP can give you an anti-sickness to help with the nausea too. As for the fatigue, you may have some vitamin deficiencies like an Iron deficiency, these are easily diagnosed with blood tests and treated with supplements or injections. The blood tests will become less frequent as you get further down the line too , they just need to make sure that your body is not struggling with the new medication.

If you have any questions regarding treatments etc then please ask us, we don't have the answers to everything but we can be a support network and we have all been where you are now and we understand how difficult it is.
 
Thanks again, your advice is really appreciated, so im not alone, again thanks. if i need more advice i know where to come.

Graham
 
Hi!

I've just put in a claim for PIP. I've recently had surgery leading to a very difficult to manage stoma, and have developed arthritis on top of the fatigue and nausea I was already experiencing. Days when I need to use morphine to manage the pain leave me dependent on taxis because I don't feel safe to drive. Same when my mental health falls over. I'm not hopeful about getting it, having heard so many horror stories about people being refused constantly.

How have you both found the process?
 
The pip process is a tricky one. I personally didn't score enough to get it but that was before I got as sick as I am now. One thing to remember is that you must tell them what you need. So for example, say "I am unable to drive because of my medication so I struggle getting to appointments" don't say you already use taxis as they mark you down if you've already made an adaptation (I'm not sure why. They took a Mark off me for already having crutches!).

The esa process is long winded but generally easier to get, I found the person who did my assessment was very well informed on the conditions that I have and was even helping by explaining how I met the descriptors (for example when they ask if you can walk a certain distance I didn't know so she changed it to ask how long I'd taken to walk from the bus stop to the clinic). Esa is great if you are unable to work and has slightly looser criteria than pip. It does slightly depend on the person doing the assessment but providing you have evidence of your conditions and medication (I took a repeat prescription and that was enough). Things like the morphine will work in your favour for this one as they were very interested in my pain medication (which includes two forms of morphine) and the way it affects me both in physical side effects like tiredness and cognitive abilities like decision making and problem solving. You're very welcome to send me a pm if you want some more detailed information on the process
 
The PIP process is ok, all very quick, but to qualify you need to prove your condition affects your day to day life, theres the disability allowance and mobility allowance, it has nothing to do with your earnings or any other benefits you may get and its tax free, paid every 4 weeks, I have had advice from numerous forums and the best advice which i never took, was to make sure someone helped fill in the form with me ie citizens advice and make sure you fill in all the spaces, theres never enough information to give, let them know how your Crohns affects everything that you do, from your mental state, to preparing food, you may have to use a blender to help liquidise your food, may use incontinence pads,etc they all add points, if you also have arthrits let them know you need help dressing or use aids to get in and out the bath or even hand rails to get up off the toilet seat, unable to walk more than 50 yards without stopping to rest, you really have to give plenty details as to your needs and how your condition affects you. good luck
 
Thanks for the advice. I'm completely new to the benefit system. Even though I work in adult social care, and have a good grasp of what is available through local authorities (ie social services) and the NHS, like care and adaptations and housing, the benefit system completely baffles me. Do you suppose they make it deliberately difficult to navigate? Seems very much to me like people who are struggling need to beg for support when they are at their most vulnerable.
 

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