I read a disabled bloggers account in the Huffington Post today of the financial hardship disabled people face (Financial Burden of Ill Health). As I indicated the other day, I would give an update on how my reassessed care package is working out for me, as it's directly the cause, along with the bedroom tax, of depriving me of disability income meant to fund all kinds of things as Elaine Benton points to in her article.
I won't go to much into the process of what happened during the care assessment which lasted 6 months in total, but you can read about that here. I already paid £3000 per year out of my ESA and DLA benefits for the care I received. Then last year I was told my LA no longer fund almost everything my carers do for me, so I was told to use my DLA to fund those things; as I said to them, they already clawed back most of my DLA as it was.
The upshot of this is that along with bedroom tax and the extra care I've had to buy I'm paying £5900 per year. I have no assets or savings. My standard of living therefore has dropped like a stone. I can no longer afford to pay for taxis to regularly see my family and friends or to attend a social event; it's now a rare occurrence. Cruelly, the LA gave me 'socialisation' hours where carers could accompany me, but removed the activity budget, so really there was no point. They pay out for these hours each week; these hours can be used in a financial way to pay for an activity, but they won't allow me to use them for that, which doesn't make sense, as they still have to pay for it!
DLA is supposed to fund things like equipment, equipment repairs, specialist diets, extra fuel costs and so on, not just the care aspect. The way they've got around this is to say they don't fund certain things. They're not allowed to take DLA mobility into consideration as income when working out your contribution to your care. Nonetheless, I've had to use this to pay for the extra care.
I now have to cover one carer's mileage, the other carers' bus fares, shopping and errand running time, ironing as it's considered cleaning, brushing the path (that becomes clogged with leaves in the winter and is dangerous) as it's considered gardening, and no cleaning at all (not that I ever abused this in the care plan) apart from 'hygienically wiping down work tops'.
Imagine what £5900 a year could do for your standard of living. I'm never going to get better therefore I need a standard of living that allows me to have things to look forward to and little treats. You might say that it is unacceptable, but really, are we now saying that disabled people should just stay at home out of sight and be thankful that they have a roof and food? Don't get me wrong, I'm thankful for what I have, and due to careful budgeting, I do still have enough for the occasional treat. But, what is the point in giving disabled people a reasonable income, if they then claw back more than half of that? Really, they may as well not have given me DLA and Severe Disability Premium at all!
What I don't have now is the ability to save any significant amounts to go towards the things I mentioned above. My washing machine is about to conk, and I really need other equipment, but I cannot save that much now. Luckily I have a good family, so for example this week they've brought me new batteries for my indoor electric wheelchair, and other things. If it wasn't for them, I'd be in a real pickle. I would have saved and bought the batteries, but that usually means going without something else. How to people manage who have no one?
As Elaine Benton mentions, disabled people face so much bureaucracy that it's overwhelming at times. I've had an care audit in January, then I had to fill in an ESA questionnaire for reassessment, the I had a 'performance measurement' visit from the DWP to prove who I was, soon I have a financial reassessment, then I'll have the ESA assessment, then in July my care assessment starts all over again.
It's seems like a constant stream of putting documents in order for the various authorities, along with regular visits to G.P.s to request letters of support. It's like this whole life is focused on justifying the support you receive for your disability. What a life when you're already chronically disabled and it's hard to just get through each day.
It's a living nightmare; no wonder so many people, unable to take the pressure any more, decide they've had enough. We are not only humiliated on a regular basis, but left financially vulnerable. Soon, those appealing ESA decisions will have to go through a 'reconsideration period' before they're allowed to appeal, and during that period they will receive NO ESA; they will only receive it when they are allowed to lodge their appeal.
As if life wasn't bad enough, seriously sick people are worrying themselves to death over the prospect of a period each year without income (which won't be back paid).
How does someone live without an income? I have already researched this and intend to address it in a later blog.
Really, we just want to be left alone to cope with our illness, not forced to jump through continual hoops.
Hi, reading about your symptoms on one of your posts - have you tried a chiropractor? Some of what you describe could be down to your body being out of alignment. I know you have enough knowledge to realise that is the case now, but I am talking about the beginning of your symptoms. Tingling and numbness can be caused by a nerve being pushed against something (e.g. bone) or a blood vessel trapped and not flowing properly. It can also cause severe pain. One treatment with the right chiropractor can help, someone who does Activator treatments or a McTimoney Chiropractor. If this makes sense to you, I can tell you more. All the best. C
ReplyDeleteHi Prickly Pear,
DeleteThanks for your interesting comment. I think that if my illness had progressed just with the symptoms you describe, I may have been tempted to do so, but it became obvious that the sensory problems, which eventually spread over the whole of my body (itching, crawling, neuropathic pain etc), were a result of some kind of whole body disease.
The joint problems exist in every joint now too, and although I've had probs with my knees since my 20's, the joint problems suddenly flared up once my muscles badly deteriorated, which is what the physio said happened.
It's just a shame that people like me don't get attention at the time of deteriorations; if I had, perhaps things wouldn't have been so bad.
Thanks for commenting anyway; I rarely receive any, but to be fair, I've been too ill to keep this blog going.
sassonx
Hi Prickly Pear here again. Believe me, being out of alignment can feel like a whole body disease. I still get an activator treatment once every 4 weeks as I still go out of alignment. How do I know I am out of alignment? It varies. Sometimes I get out of bed and my feet go numb, when they touch the floor. OR I turn over in bed and my top arm or hand goes numb. OR I feel so fatigued I cannot move. OR my brain won't think. OR I lose all motivation. OR I feel I am dragging my body around.
ReplyDeleteYour joints will suffer if your muscles are weak. You need muscles to hold the joints in place - usually gained by exercise or walking about. I understand if you are ill this is difficult but your whole body will deteriorate if you cannot move around.
As for the itching and skin crawling - have you had your kidney function tested? These could be signs of kidney failure and can come on years before kidneys fail. (The NHS terms kidney failure before they completely fail and comes on in 5 stages. They do not treat until a person reaches stage 4 or 5. But it is a gradual thing taking years) Now I know all about this for myself I could have done prevention. However, there are ways of sorting it without dialysis. (Don't ask the NHS)
I gather from your reply that some of this will be outside the boundaries of what you believe and the hope you have in the medical profession. I know from my own experience of being ill that sometimes the only thing we have to cling to are the labels of our illness and we limit ourselves to fulfil the role which is expected of us by our GP or the NHS or the DWP.
Illness is big business for the NHS and big pharma. Your wellness is not desired only your continuing illness which equals profit for them.
The greatest discovery of any generation
is that a human being
can alter his life by
altering his attitude
- William James
Love and Blessings
Prickly
Hi Again,
ReplyDeleteThanks so much for providing further information. Perhaps some of my body is out of alignment. The trouble is, that every joint is affected and yes, it is caused by muscle weakness; that's what my physio says. The problem is that because of the severe problems with my muscles, I cannot sustain the physio exercises needed to provide support for the ligaments and joints. I'm not exaggerating here, but I would need to see a chiropractor every hour to realign the joint/ligament problem lol!
I had a full extensive blood work done last year, and fortunately, all my organ function is good, so the crawling and sensory problems aren't to do with Kidneys.
I wish that there was some simple explanation for it all, I really do, but it's more involved that the symptoms you describe. What was interesting, is that I was adopted and my birth family traced me a few years ago. It turns out that my full uncle and half sister have relapsing/remitting M.S., and their symptoms aren't as severe as mine. Unfortunately, no physical markers in that regard have been discovered. I say 'unfortunately' because after 17 years, any diagnosis would be a relief.
I appreciate what you're saying about 'big pharma'. I can't say too much here for obvious reasons, but I do 'get' it. Stopping a certain 'treatment' 4 years ago, brought on the muscle spasms within weeks.
Thanks again for your advice; I'm hoping that one day I can take it. The DWP and social services leave me little spare income now to pursue any other alternative, so I'm reliant on drugs that I know aren't good for me, but that do provide a little relief, at least from the severity of spasms and neuropathic pain.
Blessings on you also.
sassonx