Ataxia UK
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I hate the DWP and they know it!

It seems after 18 months the DWP have found me to be disabled. Hurray!

So they paid me a back payment and managed to withhold over a thousand pounds, I had to call them and totally embarrass the random guy that I spoke to. I have no doubt in my head if I had not called them about that I would never have seen the money.

Do any of you get this; I am sick of explaining that physical disability does not mean we are all mad. I still think that I finally got my home assessment because I sent the most sarcastic letter I could to point that fact out.

Some of you might think that I should be grateful for the fact, but I’m not as their findings mean I cannot work. I actually want to work as there is still too much life ahead of me to spend it living on benefit.

But, it is also hard as if I request to be put in a work group they will start to take benefit away from me; I just want to hear from any of you that have been through this.

What I have done so far is to contact some recruitment consultants that know me and am trying to find Employers that support people with a disability, if any of you know anything that can help or offer advice then I would love to hear from you.

I am never going to stop fighting this....

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Hi Denise🙂 Your persistence has paid off👍 But it's obviously been stressful and frustrating to say the least🙄 Other people probably have been faced with the same obstacles, you'd think these days the DWP and other bodies would be more aware of conditions needing to be classified as disabled. Not that any of us actually wants to be classified as disabled 😏xB

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God B, I love you and know that is not what I should say, but I am still angry at the moment. I have tried everything I can think of to try and work and my condition is getting worse. I have had to fight my whole life so anger is no bad thing for me at the moment. I managed to settle a few debts, but the whole deal is still crap. Why should we have to go through this when we are already trying to deal with our bodies changing and the deal is we are never going to get better.

I am told I have to wait for someone to contact me to join, if I am up to it a Support Group.

Sorry, on the up side I have the whole family coming over on 27th so I will try and be happy for that.

Honey, how are you. Sorry for being so negative,

Denise

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🤔How many people must feel stuck between a rock and a hard place😏 Is your ataxia on an even keel at the moment🤔 Mine is up and down, as ever😂 Are you having to cater for the family gathering, these days I'm in favour of takeaways (Indian), salad or anything that can be bought and popped in the oven to reheat😉 One of the soups I made last week caused 'gurgles' for me and my husband, too much semi cooked veg😂 I'm giving our digestive systems a rest this week😉xB

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We Ataxians don't just have physical disability to cope with, cognitive issues can often be just as disabling😏xB

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Hi B,

I think most of us, but for me if I don’t work it means spending the rest of my life chasing debts. I have not totally given up the idea of moving, but even that costs money.

I will do all the prep work on 27th, but maybe not the barbequing as I doubt they will let me near it, unless they want the odd finger or two!! My condition has been getting steadily worse, no leaps or bounds, but enough that I have had to swap from sticks to crutches, although I find them easier to use. It is a lot worse on my left side and I now have to have some special shoes fitted it seems, what’s the bet they turn out to be like a couple of blocks of wood, I must get around to selling the rest of my shoes on EBay.

I was venting, as having such a long struggle against the DWP I started documenting all my phone calls, obviously I have all the letters. But I literally spent hours that turned into days and weeks. It took 10 phones calls each time to be able to speak to one person that was at all helpful. Even after winning my appeal against them last august it took 15 phone calls to get the back payment. Oh then it was short so 5 more to get the full amount. In total 59 people just hung up on me, 12 swore at me then hung up on me and 6 told me they had no record of my even receiving any benefits so I should put in a new claim. Sorry I almost forgot, one told me that my claim had been closed because I was dead; I doubt they still have a job. I must be terrible because that one made me laugh!

Oh I agree with you regarding the cognitive issues, but everyone has been concentrating on just trying to balance me on the left side so that has not really been addressed, I have a consultant appointment on 24th so I will see what they have to say.

As far as soup, just stick everything from fresh either into a casserole dish and put it in the oven, pressure or slow cooker. I have actually asked the family for a slow cooker for my birthday, or a chef, whichever is cheaper!

Denise xxx

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😂 Definitely a chef👍 Just logged on and realised ingredients are lying on the table, not in the oven, and look at the time 3.30🙄 Take care, more later 🙂xB

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😏we'd like to move too, where are the buyers when you want one. But, then there's the problem of finding somewhere else to live🙄

You're right, barbecued fingers aren't really a delicacy😂

I can see myself 'degenerating' too. For years I plateaued, now each time there's a bout of fatigue or whatever, it's harder to regain full function afterwards. Currently, I rely on a walking stick, and rollator for exceptionally wobbly days, I've never tried crutches. But I am aware that when sitting down I function much better mentally🤔 I wonder if a wheelchair would be more practical🤔

Re the shoes. I have a friend who has normal shoes specially adapted on the NHS, 3 pairs a year🤔 If we ever get a buyer I may try and negotiate a deal on my daughter's shoes (we still house them)😂

Ugh, investigative phone calls can really try anybody's patience, I think you were very restrained considering your so-called demise😂

This morning I had cognitive issues. I was at the Vets with my daughter ( and the cat). I'd got my eye on a price chart comparison (regular fees versus payment plan). It was only an idle comment I'd made but my daughter raised her voice (and her eyes) because I hadn't grasped something basic. An impartial 3rd party (vet nurse) cleared things up🙂 Harmony was restored👍

Chilli eventually made its way into the oven, too much hot chilli powder, and pepper😂 I'm playing it safe with baked potato and salad😉xB

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DeniseLB

I understand exactly how frustrating all this is for you.

My sister has MS and got a job through the Shaw Trust many years ago, they work with disabled people, they are a great organisation and offer a great deal of support.

Here is the link:

shaw-trust.org.uk

It is so easy to get angry about the lack of support from DWP, I spent many hours on the phones, they even lost my details, but in the end my daughter told me that it doesn't do anyone any good getting angry, all it does is increase blood pressure!

Hope this organisation helps.

Good luck

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I feel your pain and I empathise so much – it's an awful predicament that we all find ourselves in.

What warriors we all are. I commend and respect you all.


And where is the practical, sensible, straightforward help to negotiate this minefield?

The CAB say they can help with PiP, but you have to visit in person, (but the social havnt provided a ramp, so it's impossible to leave house without means or money to get ur scooter out or into/out of the house and car)

And the PIP want you to go to an assessment, even when you are too sick and befuddled to even leave the house!

You have to admit being pretty much useless in every way, to get a benefit that doesn't even cover your monthly outgoings and it you don't word it right, or present yourself right, those paltry benefits can be reduced or taken off you.

You are judged,patronised, ignored, spoken to like you are a simpleton, passively aggressively mistinderstood - all so they can reach their target of getting away with paying us as little as possible, leaving us destitute, depressed and in a living hell..The stress and the effect on us mentally, emotionally and physically is not their problem...

We have to face the fact that they don't care, they don't want to be fair, they want to catch us out , so they don't have to pay a pittance to us.

Our vulnerabilities are not empathised with or understood, they are they are exploited. We are exploited.

That is the reality of it. We need to fight back, but how can we fight a system where the goalposts keep changing and our health keeps deteriorating?

The anger does help us to keep battling, when we all know it is no good for us. It's knowing what battle to fight and which ones to just surrender to . At the and of the day, even maximum benefit allowances leave us below the poverty line.

It's a a cruel reality.

As far as I understand it, they don't understand the concept of incurable and degenerate brain conditions, but they are qualified to judge us, and send us out more forms to try and disprove this medical fact.

its passive aggressive stupidity and negligence at its very best, when you are trying to hang on to your sanity as it is.

I found reading the scoring system very helpful in wording my PIP form right. It is not so much about what you can or can't do, but the effect is has on you. Eg I can't move and am in pain after struggling to get some clothes on...

always keep a first copy of your PIP form, so you can refer back to each section and note specifically what has got worse.

They can reduce or take away your benefit,(despite them knowing that you have a incurable degenerative brain illness) if you don't.

In terms of still working, (despite the world of shit we are all in on a daily basis) I commend you, it is going to take a lot of working out and weighing up.

Remploy is a disabled recruitment agency, which find disabled people jobs.

Turn2us is an organisation that advises on benefits entitlements and any grants that may be available. It's worth a look

The social can come and do an assessment, which could enable you to access direct payments, but this is also a stressful journey:https://www.nidirect.gov.uk/articles/direct-payments

Knowledge is the only power we have, leave no stone unturned and be ready.

If it is a battle of wills and spirit, then we will all surely prevail.

Love and light to you all✨💕☮️🌈

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