LUPUS UK
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Disability Rights Report on PIP process

Disability Rights UK have just completed a report on the PIP process, which is free to read/download here (just follow the links):

disabilityrightsuk.org/news...

The report was compiled from interviews with over 1700 people with disabilities and long term conditions, including lupus and other auto-immune disorders.

As you might imagine, there are some pretty damning testimonies in it; some of them echo very closely the experiences of people here who have written in this group about their difficulties with the process. DRUK are also running an online campaign which invites people to contact their MP about the problems with PIP.

So don't forget to do your calming meditations after reading the report, then write to your MP here :)

e-activist.com/page/13035/a...

x

8 Replies
oldestnewest

No meditation or smelling salts needed here ! Any surprises? Nope.

Thanks Mike x

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Sadly, it's all too familiar, isn't it? But seeing it in black and white is still sobering - I mean, 11% of people are deterred from even starting a claim because it is too complex. That's a disgrace x

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It's ludicrously complex, and requires a lot of knowledge of "how" the form works on the points system. This overeducated woman found it Byzantine.

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Exactly - and the people who give up are those with lowest literacy skills, difficulties processing information, least social support, depression...people in the most need x

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I personally found the Welfare Rights Officer from my council superb. She came to the house and filled in the form herself (I simply couldn't do it, albeit I had a bad flare in my hands). The great advantage was that she knew thoroughly how the points system worked and how to phrase the answers . Even if my hands co-operated, I doubt I could have done it half as well. In the event, it took her, an expert, the best part of two hours.

Why does the form need to be filled in manuscript? A person with limited literacy skills, impaired sight, language difficulties and a host of other problems couldn't even begin to start, and not everyone wants to share their personal history with others in any case. I felt despairing when I had to face the problems I have, so starkly laid out. Then on top of that comes the assessment.

Stats show that PIP is the least "fiddled" benefit there is, as long as claimants report changes,

I could go on x

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Ugh don't even know where to begin. I sent mine off today. As a first time applicant hoping to embark on a PhD I felt a total fraud from beginning to end. The pencil rolled on the lines effortlessly enough but put it all into pen and ink took my wrist back to a time when splints were required. How on earth would anyone with hand arthritis or ulcerated fingers manage? And then to show it all to a complete stranger at CAB - who read it all through (including my toileting/ dysmotility issues?!) was indescribable. But to have to dictate it to someone would be enough to put me off. And I'm just about managing to juggle chronic illness with staying solvent .. just. And I have my fatigued wits about me- especially early this morning after a Zopiclone to ensure i had some sleep.

I'm afraid I'm not brave enough just now to read the DRUK link Mike - I'll give it a few days and then pinch myself hard. X

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Hugs Twitchy. I was in splints at the time, but had been sent in the right direction to the Welfare Rights Adviser. When I had the DLA it is was nothing like the current system at all. Yes, it is highly humiliating to talk about very personal physical problems. I even found it hard to give a very good friend a copy so that she knew in advance what might go on when she accompanied me to the assessment. She simply nodded quietly as she went through the form, then said "Well that's so true" while I squirmed and cried.

So sorry about your PhD Twitchy. It's a fascinating insight into something that is otherwise beyond the grasp of many x

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Hi Whisperit

Thanks for sharing this info. I would never have got DLA if I hadn't gone to CAB. They know how best form needs to be worded for best results. I'd tried and failed at first on my own!. Hope your as well as possible. x

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